- New Day Films

Transcription

- New Day Films

Disease Is Not A Metaphor
by Cyree Jarelle Johnson
Disease is not a metaphor for some crude and unnamed other. Disease is not
capitalism, nor is it communism. Disease is not anarchy, nor is it the threat of anarchy.
Except for when the body is chaotic and unknowable. Disease is not a virus in the
system. Disease is not the body, not the whole, but a part. Disease is not a test from
god. Disease is not a fiery furnace, a wall to climb over, a home to be lifted out of by
rope. Disease is not a battle to be won or lost in death. Disease is not a metaphor.
Disease is not hyperbole. Disease is neither metonym nor synonym. Disease is a
condition of the body. Disease is a visitor. Disease is a backseat driver who climbs up
front and takes the wheel.
Illness is not a filigreed way to speak about things unpleasant and undesired, no
matter how comfortable you may be with thinking of it in that way. You were not
“crippled” by debts, nor “paralyzed” by fear, nor was your Thursday evening movie
“lame”. You are not “blind” to the reality of the situation, nor “deaf” to the concerns
of a close friend. You were re-entrenching able-bodied supremacy in language
though, is there a specialized insult for that, taken from the lexicon of sorrow heaped
upon people who are not yourself? No, there are not more important things to think
about than words, because the things that you say are the substance of your
thoughts, which become the things that you do and the biases you keep close to your
chest.
Neither disease, nor illness, nor disability is a convenient way to transmit your point into
the bodies of those who would not listen otherwise. Disease is so rarely convenient. By
invoking disease you have likely hit the point in their brains that monitors pity, fear, and
disgust. If you are talking to me, it is the sector that should learn to better control rage.
Disease is not for you to take on and cast off and diagnose yourself anew each
morning. Disease is not for you to diagnose in the bodies of others, based on your
novice opinion and ableist vision. Disease is not erased by the clever sidestep of
euphemism. You cannot close your eyes and blink it away in hopes that we will die
before you open them up again. You may utter the name of the disease loudly, I do
not think it offensive.
The body is not an apology for the disease. The body is not something to be looked at
with eyes cast down and weeping. The body is not something to be viewed with the
smug sense of knowing what health is. The body is not an apology for the disease. The
body is not a manifestation of corporeal weakness and lack to be filled up by Jesus or
God or the holy spirit. The body will not untwist itself, anti-virus itself, or cover itself up no
matter how many prayer circles surround it, or altar calls it kneels before. The body is
not something to feel sorry for because the body is not sorry. The body may be twisted
and sly, but the body is not an apology.
The body is not a mistake. The body is not a quirk. Not something to be aborted in
utero because of preemptive pity and shame that you could produce such a body.
The body is not something to be tested out of existence, or prepared for with good
breeding. The body is not something to be quarantined in sanitariums and put under
the defacto house arrest of disgust. The body should not be killed with medication and
medical middle managers who know best while no one cares that you are dying. The
body is not something to be fought against or beaten in a race against oneself. The
body is a beating, spreading thing, moving and touching even at rest.
And the body is not miraculous or brave, even though it does so many things you think
it shouldn’t be able to. And the body is not just like yours even though there are
overlaps in desire and function. Sameness is not a prerequisite for solidarity. And you
should care about it even if you have made conscious attempts to ignore our bodies,
to look away, to avoid hospitals and the smell of home care. And you shouldn’t need
an apology because the body is not wrong.
Looking Back but Moving Forwar<l / 99
Chapter 6
Looking Back but Moving Forward.
The Radieal Disability Model
None ofthe models discussed so far have adequately addressed both disablism
and disabled minds and hodies; rather, they focus either on the oppression we
experience (social model) or on what the models define as our flawed bodies and/or minds (eugenic, medical and charity models). This final chapter
discusses the radical model of disability, my proposal for bringing disability
politics into a new wave. This framework, while based on the work ofa number
of disabled activists and scholars (notably Clare, 1999; Davis, 1995,2002;
Moore, 2002; Erickson, 2007; Epstein, 2009) as well as feminist, anti-racist,
anti-capitalist and postmodern theory, is relatively new. Developed in organizing meetings and coffee shops in Toronto, it is my proposal for how we should
move disabled people's movements forward and how anyone concerned with
social justice should conceptualize disability.' It is also a call to action, for disabled people and non-disabled people alike, to organize inclusively for social
justice and radical access.
The radical model defines disability as a social construction used as an
oppressive tool to penalize and stigmatize those of us who deviate from the
(arbitrary) norm. Disabled people are not problems; we are diverse and offer
important understandings of the world that should be celebrated rather than
marginalized.
There are four key concepts in the radical model. Firstly, disability is not
separate from other forms of oppression; rather, it is interlocked with and
overlaps them. Secondly, what is considered normal is arbitrary and requires
deconstruction. Up until this point, all ofthe models ofdisability have failed to
challenge the supremacy ofthe norm. Margrit Shildrick andJanet Price (1998:
236) have written, "A more radical politics ofdisability, then, would disruptthe
norms of dis/abled identity... by exposing the failure of those norms to ever
fully and finally contain a definitive standard:' Thirdly, the disabilitylabel is used
to marginalize specific types ofpepple in order to obtain and maintain power;
the classification of disabled is a pplitical determination, not a biological one.
Disability is not about whether or not something is "wrong" with someone;
it is about the classification of disability, which allows certain people to be
marginalized and other people to both benefit from that marginalization and
jnstify it, becanse the rest of ns are inferior. Lastly, acceSSibility cannot be
addressed universally; rather it must be approached holistically.
While the medical model presents disability as falling somewhere on a
spectrum between full health and the absence of it, the radical model posits
that, to borrow Foucault's (1969) concept, disability falls somewhere in a
constellation. Like the constellations in the sky, disability is in constant flux
and appears different depending on the positioning ofthe onlooker.
This model rejects the social model's distinction between impairment and
disability. To review: "impairment" is defined by the social model as functional
limitations and "disability" as the oppression "imposed on top of our impairments" (UPIAS in Oliver 1996: 33). The radical model ofdisability rejects the
notion that impairment is a biological reality. The radical model also posits that
impairment and disability can necessarily be distinguished from each other.
This model is not the social model of impairment - while the model has a
strong focus on the social construction ofimpainnent it rejects the dichotomies
created by the social model.
In some times, places or cultures, having visions is viewed as wholly nega¥
tive, requiring the individual to undergo medical intervention, confinement,
medication and!or forced electric shocks to the head. In other times, places or
cultures, it is seen as a gift. Similarly, deafuess is understood to be a disability
by the medical model but for some people this has been far from the case. For
instance, in Martha's Vineyard around the turn ofthe last century "everyone ...
spoke sign language;' according to Gale Huntington, who lived there at the time.
The townspeople "didn't think anything about [Deaf people], they were just
like everyone else" (in Groce 1985: 2). Deafness was perceived very differently
and not as a disability in the way that it is in a community where most hearing
people are unable to communicate with Deaf people. What is considered a
disability depends on the context.
Intersedionality
A foundational component of the radical model is the idea of intersectionality: addreSSing multiple oppressions together and in conjunction with each
other. The word "radical" is derived from the Latin, meaning "having roots:' A
conceptualization ofdisability that did not include, at its base, the acknowledgment of and engagement with tbe interlocutory nature of oppressions could
not be a radical model.
Within disability theory, intersectionality is often ignored. For instance,
disability studies have been called "white disability studies" (Bell 2010: 374),
and the exclusion ofwomen in that discipline has already been documented. Eli
100 I Disability Politics and Theory
Clare writes further on the lack ofintersectionality in radical disahility circles:
Unfortunately, not many disability or nondisabled progressive groups
engage in multi-issue thinking and organizing that deeply embeds
disability politics into an agenda that includes race, class, gendlii'and
sexuality. At an ADAPT demo recently, 1saw a flyer that read "You think
prison is bad, try a nursing home:' In one simple slogan, disability
activists advanced a hierarchy ofinstitutions and oppressions, defined
disability as their sole focus, and revealed profound ignorance about
the ways being locked up in prisons cause bone-crushing damage,
particularly in communities of color. This slogan and the disability
politics behind it leave little chance for making connections and
addressing the daily complexities of folks who know the grief and
outrage of both prisons and nursing homes. (2009: 12)
Disabilitypolitics often re-establish whiteness, maleness, straightness and
richness as the centre when challenging the marginality ofdisability. Similarly,
when disability studies writers discuss other oppressions, they often do so as
distinct phenomena in which different marginalities are compared (Vernon,
1996b; Bell, 2010).
When oppressions are discussed in an intersectional road} it is commonly
treated like a country road: two, and only two, separate paths meet at a wellsigned, easy-to-understand location. Typically, authors talk about disability
and women (see Thomas, 1999; 2004a; 2004b; Rohrer, 2005; Wendell, 1989,
1996; Crow, 1996; Morris, 1991; Fine and Asch, 1988; Gill et a!., 1994; Hall
2002; Garland-Thomson, 1994), disability and class (see Stewart and Russell,
2001; Preece, 1996), disability and race (see Bell, 2010; Stubblefield, 2009;
Stuart, 1994) and disability and queerness (see McRuer 2002, 2003a, 2003b;
Clare, 2001; Sandahl, 2003). None of these lists is complete, and there are, of
course, some important exceptions to the common practice ofover-simplifying
intersectionality (Vernon, 1996a, 1999; Clare, 1999; Garland-Thompson, 2002,
2005; Emmett, 2006; Petersen, 2006; Sherry, 2007; Clare, 2009; Dossa, 2009;
Mingus, 2011).'
Intersectionality is a multi-lane highway with numerous roads meeting,
crossing and merging in chaotic and complicated ways. There are all different
kinds ofroads involved: paved and gravel roads, roads with shoulders and those
without and roads with low speed limits, high speed limits and even no speed
limits. There is no map. The mpst important feature of these intersections,
though, is that they look very
depending on your location.
With respect to multiply opptessed people, Chris Bell (2010: 378) points
out that their ethnicity and race are erased, "letting them he run over, forgotten:'
Looking Baek but Moving Forward / 101
This is the case for many people with more than one marginality, yet disabled
organizers and academics in the field of disability studies negate our complex
identities. When disabled people are "run over" because our identities are omitted, it is no accident. These erasures occur for a number ofreasons: prejudice,
ignorance and/ or an attempt to distance a group from others in order to better
lay claim to privilege.
Being real about intersectionality means working to keep people from
being "run over," as Bell puts it. One way people get run over or left out occurs
when some members ofthe disabled community talk about "disability culture:'
"Cultnre" can be used in lots of ways and mean lots of different things. It is
important, however for everyone to recognize that they are a part ofa culture.
Sometimes white people don't acknowledge that they are a part of a culture
because it is so pervasive and dominant that it can be hard for some people to
recognize. When disabled people talk about disability culture it is importanl\f
that they not erase the many cultures that many disabled people are a part oD
Out from Uncler Disability
It is highly problematic for disabled people to simply build a rights movement
to access privilege; yet this has largely been the case in Canada and the United
States. Equally problematic are groups ofpeople who are classified as disabled
working to take themselves out from under the disability umbrella in order to
build a rights movement to access privilege. Many different groups that fall or
have fallen under the disability umbrella have worked to separate themselves
from the category of disability to their advantage and to the disadvantage of
those they leave behind.
Since in the 1970s, Deaf people have fought to get out from under the
disabled label (Baynton, 2002). According to A Journey into the Deaf-World by
Lane, Hoffmeister and Bahan (1996: 232), "To be Deafis not a disability in
Deaf culture, and most members of the Deaf-World see no disability in their
way ofbeing:' Or, as MJ. Bienvenu has put it "We are proud of our language,
culture and heritage. Disabled we are not!" (in Lane, 1995: 83). This statement
not only works to separate Deaf people from the disabled identity, but it also
implies that there is no pride in a disabled identity.
Psychiatric survivor activists have been working to unaffiliate with the disabled community. This movement has asserted that there is nothing wrong with
psychiatrized people and, therefore, they are not
Gifford
aIld Harrison argue in Speaking Our Minds that this is because they understand
label as being imposed from above by mlRllcaI prore;;;;;nars:
Many psychiatric system survivors are unwilling to see themselves
Lo"klngllack but Moving Forward/103
102/ Disability Politics and Theory
as disabled. They associate disability with the medicalization of their
distress and experience. They reject the biological and genetic explana.
tions oftheir distress imposed by medical experts. They may not see
themselves as emotionally or mentally distressed either, but
celebrate their difference and their particular perceptions. (1996: 209)
Trans and other psychiatrized people, aloug with Deaf people, have set
out to counter the stigma attached to disability and to build a rights movement
by arguing that there is nothing wrong with them; ergo, they are not disabled.
Trans people argue that there is nothing wroug with them, they experience
their bodies and genders in ways that do not align with so·called biological
standards; psychiatric survivors argue that there is nothiug wrong with them
Because many psychiatric survivors and mad pride organizers have disablist
because they experience or are perceived to experience the world differently;
assumptions about disability and disabled people, they frequently argue that
they are not a part of the disahled community. Additionally, a number of the
campaigns against forced drugging and EeT invoke disablist arguments to ad·
vance their case (Withers, 2010). Psychiatric survivors have problematized the
medical model as it applies only to them, identifying it as abusive and a tool for
Deaf people argue that there is nothing wrong with them because they are a
linguistic minority These arguments do not contradict the radical disability
model whatsoever. However, with Deaf, trans aud psychiatrized people saying
that they are not disabled because there is nothing wrong with them, theywork
to reinforce the idea that there is something wrong with those disabled people
they are trying to distance themselves from.
While Deaf, trans and psychiatrized people are working toward becoming
non·disabled, other groups have been far more successful. As already discussed,
women were classified as unfit or disabled during the eugenic era. Feminists
fought for women's rights and iu doing so worked to construct themselves
as nondisabled, reinforcing the oppression of those they left behind. Many
feminists have perpetuated the construction ofwomen as strong) non-disabled
people, saying things like, "Female physical frailty is not a reality but a myth
with au agenda" (Dowliug, 2000: 213).
Racialized people have also worked to distance themselves from disability.
Erevelles, Kanga and Middleton (2006: 78.79) have writteu about some critical
race thinkers who "have actively sought to distance race from any associations
with disability because they have recognized that this association has been
used to justify the brutality of slavery, colonialism, neocolonialism and the
continued exploitation ofpeople ofcolor." 'Ihe.Qisability label has been used in
waYSj!g<tillIDaci'lliz"d.!'.";;;;Te:However,
the problem is not disabled people; rather, it is the disability label, and choosing uot to talk about it does nothing to disassemble the power structures that
allow it to exist. Some anti-racists have also argued that it is "demeaning to
racial groups" to conueet disability struggles to anti-racist struggles (Erevelles,
Kanga and Middleton, 2006: 79).' Of course, this perspective is demeaning
to disabled people and only works to strengthen the idea that we are separate
and should remain separate.
The mainstream gay rights movement 'Yas also succ"ssfllJ.illQeLl)jL<1".<:.I"s·
slfu'd as
While the medical industry had pathologized homosexual·
social control in relation to the psychiatric aspects ofmedicine (Burstow and
Weitz, 1988; Burstow, 2006), not to the other aspects of the medical model
or the model as a whole.
The trans (transgenderl transsexual, genderqueer et
al.)
community is a
group of people that has been psychiatrized but, on an organizational level,
does not work with psychiatric survivors to achieve non-disabled status.
Rather than being protected on the grounds ofgender or sex, trans people have
human rights protections in New York (and possibly other states) because "GlD
[gender identity disorder] is a disability" under state law (Doe v. Bell, 2003:
n.p.). Trans people are pathologized under the category of gender identity
disorder (GlD); our identities are funnelled through medical "treatments:' This
process is undermining, arduous and can be abusive (particularly with respect
to children). Some trans activists are fighting for the removal of GIn from the
DSM so transsexuality would no longer be a disability. DL.JCclly'-winten; (in
G]P.Jlefu rm 1\
p".o.E!e]..=cQm:!iti
not a
is the saD'le
..<;ontilw"s: .'Pi!ference
thereis no consensus on this point. The
for
dissent is the realization that many trans people are poor and canuot a!ford sex
reassignment surgeries (and, to a lesser extent, hormones), which they would
not have access to without the pathologization of the trans identity.
As a disabled trans person, I believe the trans commuuity should adopt a
radical disability perspective and view (other) disabled people as allies. 1think
the trans community should fight for medical care without pathologization
and use this discussion as a waj!;;",f challenging the medical system and the
existing power structures that thrmedical system moulds its perspectives to.
Nevertheless, there are mauy trans people fighting to take us (or those of us
who areu't otherwise disabled) out from under the disability umbrella.
ity and homosexuals out of hatred, ignorance and desire for social control)
homosexuals looked to this sarne profession, and specifically to psychiatrists,
to de·pathologize aud socially legitimize them. In the 1960s, organized gays
104 / Disability Politics and Theory
and lesbians took an active role in fighting for change. One of the key aims of
the struggle was to establish homosexuality as a minority group rather than
a disability. The mainstream gay rights movement argued that the categorization ofdisability needed to become one of the key battlegrounds in the,;ights
movement (Kameny, 2 0 0 9 ) . " " •
The mainstream gay rights movement built itself through its separation
away from other marginalities and its separation from the disability umbrella.'
In establishing homosexuals as non-disabled, the movement actively organized
against being defined as disabled, as well as being against those who defined
homosexuals as disabled: the American Psychiatric Association (APA). The
APA was the gatekeeper of all psychiatric diagnoses and had the power to
un-psychiatrize homosexuality. This criticism was not of pathologization or
the oppressive nature of the classification of disability in general, Simply that
those in power had erred in classifying them as disabled. This strategy actually
worked to maintain disablist oppression and the status quo while negotiating
privileged homosexuals' co-optation.
In 1973, the mainstream gay rights movement was successful in getting
homosexuality de-listed as a psychiatric disability. Gay psychiatrist Charles
Silverstein (2008: 272) called it "the most important achievement ofthe Gay
Liberation Movement:' Out of this, a new "minority rights" movement was
born. Homosexuals would no longer be forcibly confined, electro-shocked,
drugged, lobotomized and subjected to other horrors Simply for being homosexual. Undoubtedly, this is an incredibly important victory in the history
of gay rights and one I personally benefit from. However, it is important to
examine it critically. It was a victory for many homosexuals at the time, but a
lot ofhomosexuals were left behind.
To be gay or lesbian is no longer to be pathological, as white, middle- and
upper-class homosexuals and bisexuals (especially gay men) are considered to
be productive and useful in contemporary society (particularly the "straight
acting" gays or "strays"). The mainstream movement has rallied around
assirrulationist issues like gay marriage, gays in the military (in the United
States) and adoption that work to uphold capitalist values and social norms.
This is done instead of, and at times at the expense of, organizing in defence
Looking Back but Moving Forward /105
women members).5Racialized communities and women also sold out many
members of their communities in order to access privilege by winning the
status of non-disabled.
Griffin Epstein (2009: 33) says that there is a "national mandate for the
formerly marginalized to pick up the mantle ofthe oppressor in exchange for the
rights and privileges ofcitizenship:' With respect to disability, all ofthese groups
(women, racialized people, homosexuals, trans and other psychiatrized people
and Deafpeople) have taken up that mantle in order to win reclassification as
non-disabled. Those groups that have won a level ofmarginality that does not
include being called disabled largely continue to uphold disablism and maintain
separation from disabled people. Indeed, Davina Cooper (2009: 233) argues:
"When one minority group tries to seek equality by breaking away from the
stigtnaproduced by association with another group, the claim of equality can
further naturalize the other minority group's alienation:' This act ofseparation
often serves to reinforce the justifi.cation for the oppression ofthose left behind.
Ofcourse, there are many disabled people who are also members ofthese
groups that have been left behind in these definitional shifts. Beyond continuing
to oppress other members ofthese marginalized groups, there are other reasons
that make the struggle to reconstruct these groups as non-disabled problematic.
Ofcourse, it is always problematic and disappointing (yet, almost predictable)
for marginalized groups to participate in the oppression ofother marginalized
groups. Rather than working in coalitions to challenge the systems that permit
the characterization ofundesirable people as disabled, these groups have created space for their communities to be at perpetual risk ofbeing reclassified as
disabled on other grounds as the needs of those in power shift.
Threats of being placed back under the disability umbrella are real for
racialized communities, women and homosexuals. Academics like Rushton
andJensen have devoted their careers to proving the intellectual inferiority of,
particularly, Blackpeople to build the case that they are disabled. The prospect
of the re-pathologization ofwomen has recently become an issue because of
prenatal sex selecti.on. Also, the discovery of a "gay gene," which is actively
being sought, could lead to the re-pathologization ofhomosexuality. These are
just some ofthe ways that these communities could be reclassified as disabled.
of (or even actively marginaliZing) "deviant" queer lifestyles like polyamoury,
Because components ofthese movements have worked to reinforce the idea
sex work, transsexuality; transgenderism and gender queerness that challenge
that disability (and by extension disabled people) is bad and undesirable, they
will be left with few political options if they face re-pathologization. Further,
these groups all share overlapping populations, so, racialized queer women are
especially at risk ofbeing put back into the disability box.
Adopting a radical model ofdisability, rather than trying to break out ofthe
disability category, would problematize the entire disability labelling process,
those values and norms. Many ofthese ways ofliving remain psychiatrized and
are still considered disabilities. That said, there remains strong opposition on
the political right to the
The mainstream gay rights
of"strays" into mainstream society.
sold out its disabled members (not to
mention its racialized and pOOf, trans, intersexed, two-spirited and, oftentimes,
not jnst a few communities' membership within it. Snccessfully eliminating
the systems that permit the creation of the category of disability would leave
every member of all ofthese marginalized groups better off.
Ofcourse) the reinforcing ofoppression in order to get out from un4e:r the
disability label is only one way that marginalized groups work to uph'bfd !he
oppression ofothers. There are countless examples ofwhen and how oppressed
groups (including disabled people) have targeted or tried to oppress each
other for rights and resources. 1his is because) according to Martin Banton and
Gurnam Singh (2004: 113), "oppressed groups often succumb td' oppressive
ideologies. One of the consequences of this is that the group "may seek to
identify a position within the strata that is superior to as many other groups
as possible:' When this happens, according to Banton and Sing, oppressed
communities can act to "reinforc[e] the structures of oppression:'
Disabled people are not immune to this phenomenon. Disability organiza·
tions in Canada and the United States have frequently "picked up the mantle
ofoppression" and allowed themselves to be co-opted, rather than build their
struggles outward. There are numerous examples of those groups still well
under the disability umbrella trying to distance themselves from others to
gain privilege. Some physically disabled people were against advocating for
the inclusion of people who were psychiatrized or intellectually disabled in
the Charter of Rights and Freedoms because it could lower their chances for
inclusion (Vanhala, 2011). There has also been a great deal of criticism of the
disability rights movement for being dominated byphysically disabled people.
There is also a Facebookgroup called "Being physically disabled does not
automatically make us stupid." It tells people to "join this group and together
we can make people change their attitudes towards us:' The attitudes that are
being changed, though, are the disablist attitudes about others - and these
attitudes are being reinforced. I have also seen physically disabled people who
are the brunt ofdisablism say that they are smart or that they have a university
degree to assert their worth.
.• On the other hand, I know physically disabled people who have been
the subjects of pity from intellectually disabled people who operate on the
assumption that they have it so much worse. Manyintellectually disabled people
identify as "people who have been labelled" (People First of Canada, 2006).
The choice to refer to themselves as "people who have been labelled" without
using the word "disabled" reinforces the idea that there is something negative
about being disabled, while addressing the root ofthe problem, or the fact that
the label exists, is out oftheir coiJ,trol. I think it is important to respect the way
that people choose to identify.
same time, I am critical ofthis choice as
it seems to me to be rooted in disablism.
Looking Back but Moving Forward / 107
This competitive oppression-building is also performed by disability
organizations towards those groups that have moved outside ofthe category of
disability. Just one example is how, in Canada and the United States, disabled
organizations have fought for "accessible" public transit; but once ramps,
lifts and automatic announcement systems have been put in place, they stop
fighting. These organizations don't fight for free or affordable transit or an end
to discrimination on public transit) to name but a few causes. 6 Movements for
change cannot continue to replicate the models ofco-optation and oppression.
Disability is not actually about those of us who are disabled; it is about"
those with the power to call us disabled. Indeed, marginality is controlled by
those who are not marginalized, which makes it very important to work collectivelyas oppressed groups to target that power. Further, one cannot choose
to oulyfight disablism, as most disabled people experience more than one form
ofmarginalization and) therefore) more than one form of oppression.
This is why poverty, seXism, heteroseXism/homophobia, transphobia,
racism and ageism must be fought in tandem. Internationally, most disabled
people are racialized (New Internationalist, 200S; Parens et aI., 2009). In
Canada, rates of disability are disproportionately high among First Nations
people, racialized people and non-European recent immigrants (Raphael,
2007) .Also, most disabled people are women - they are more likely than men
to report chronic conditions and disabilities (Federal, Provincial and Territorial
Advisory Committee on Population Health, 1999; Raphael, 2007). Disabled
people are far more likely to be poor than non-disabled people (Rosano et
al., 2008; Raphael, 2007; oEeD, 2010). Many of us are queer and/or trans,
and most of uS are seniors. Our multiple identities means that if we focused
solely on disablism, much like aspects of the disability rights movement has
done, then we are working to exclude the majority ofdisabled people from our
struggle - people who would not be able to access the privileges that they
would be able to access ifthey were not disabled.
It is important not only to acknowledge the diversity within disabled commuuities, but also to actin solidaritywith othermovements. The disability rights
and social models have largely failed to fight other oppressions and to work in
solidarity with other marginalized groups and anti-oppression movements for
change. Rather than fighting for our piece ofthe pie while working to enforce
eXisting oppression on others, we need to bake a new pie. We have to build
new models. To quote longtime activist Beric German (2009), "It cannot just
be pie in the sky, it has to be pie that you can
lOll! Disability Polities and Theory
Normal, Biological and Political Constructions
Disability, which includes impairment, is a social construct. In U.S. and
Canadian societies, OUf disabilities are defined by those in power to their own
advantage. WhoatlQ
shiftsclepem!irlgon wh.\ltJ'.o",er
d\et.ales.illte.tJ.tiJnes.withhroad, sweeping definitions in order to marginalize
Peop-Ie. In this society, power and capitalism are intrinsically related. Those in
power enable capitalism to function, and capitalism enables those in power
_'"rto keep their power and obtain more of it. According to Sam Gindin (2002:
n.p.), "Some people control the potential ofothers, control how that potential
develops over time, privately appropriate the surplus created in social production, and apply that surplus to restructure work, communities, and future opportunities:' It is these elites that also control the definition ofwhat is normal
and, therefore, what is disabled, in order to maintain and expand influence and
control to their benefit. The definition ofdisability shifts as the needs ofthose
in power shift: as economic and social needs change, so too does the
tion ofwho is disabled. People who are disabled are labelled so because people
with power say we are disabled.
Since the advent of eugenics, one of the primary reasons we have been,
and continue to be, categorized as disabled is because we are considered to be
unproductive or under-productive in the capitalist system. In practice, capitalism is a system that is upheld by a number ofmyths. One ofthem is that white
people are superior to racialized people. Another is that men are superior to
women (also that there are only women and men as far as gender identities go
and that those identities are fixed). Capitalism is not necessarily patriarchal
and racist; however, the current form of capitalism that operates globally is
inherentlypatriarchal and racist. All forms ofcapitalism, however, are innately
oppressive and work to benefit the few at the expense ofthe many. Also, there
is a myth that some people have power and wealth because they work hard and
others are lazy and that there is one ideal that people must strive to achieve.
In order to maintain our belief in the capitalist myths, they need to be
SOcially imposed. Those of us who violate the goal of striving for the ideal (by
choice or by our existence, as is the case with many disabled people) or who
challenge our roles within the socio-economic system face consequences for
our deviance. Sometimes these consequences are legal, such as forced confinement and "treatment" of many psychiatrized people, but more often they are
economic and sociaL We are made into examplesj we are denied the resources,
joys, comforts, jobs and pleasures that "normal" people have access to. We are
then punished for our low
by way of systemic discrimination,
poverty, dehumanization, degend'ering7 and violence. This is the punishment
used against us. Importantly, though, it is also a lesson for everyone else to
do everything that they can (which is obviously out of their control) not to
become like us.
Under capitalism, individual productivity is linked to individual worth: the
more you produce, the more money you make and the more valuable you are
to society. As productivity and worth are measured entirely in monetary terms,
people who are left out of the system, such as disabled people, are worthless.
Ofcourse, most disabled people who are excluded from paid labour are left out
because ofdiscrimination and inadequate workplace accommodation. Rather
than arguing that disabled people can be productive in a capitalist paradigm, the
radical model of disability sees capitalist values as problematic. People should
not be valued by how much money we make, how much we produce or how
much we contribute to an unsustainable and unjust economy.
This is not a romantic or superficial point. TIlls is an important contribution that radical disability theory can make to radical politics today. Frequently,
people who are organizing or agitating for social justice retain this core capitalist value. We often view other people's value through their contributions to
the struggle, through how much work they do or how productive they are. If
we truly want to create a just society, we must value people as people, not as
producers.
What is considered normal or nonMdisabled is constructed around certain
kinds ofpeople, while leaving others out. Another myth that is firmly upheld is
that disabled people are dependent and non-disabled people are independent.
No one is actually independent. This is a myth perpetuated by disablism
and driven by capitalism
we are all actually interdependent. Chances are,
disabled or not, you don't grow all of your food. Chances are, you didn't build
the car, bike, wheelchair, subway, shoes or bus that transports you. Chances
are you didn't construct your home. Chances are you didn't sew your clothing
(or make the fabric and thread used to sew it). The difference between the
needs that many disabled people have and the needs of people who are not .
/
labelled as disabled is that non-disabled people have had their dependencies, normalized.
and call the .',,people who need those things independent, while other nee.gs areS9nsid_ered
us
Ot1;rs
resources and to meet our needs. We are all inter4epef!dent. 1his
------
is
..E,art
l:!?,:vever, disabled people areconstructed as dependent and deviant rather
a£;:r;;;;;:;·;:;;;I:ifwe100katwhow"'''OflgmaIlY7:lassified as
disabled under the first m-;;dern categorization of disability (eugenic theory)
in Western society - poor people, women, homosexuals, racialized people,
physically disabled people and intellectually disabled people - the links
between unproductivity and the categorization ofdeviance and disability are
apparent. While there are clear capitalist functions for the eugenic classifications of disability, it is important to recognize that the oppression that these
groups experience is not rooted solely in capitalism. Sexism, heten)s!jXism/
J,,;"
.,
homophobia, disablism and racism all exist outside ofcapitalism, and it would
be irresponsible to argne that replacing capitalism would alleviate all oppression.
Legislative Definitions of Disability
What is constructed as disability is informed by numerous forms ofoppression
and has clearly changed over time. Even within a set period of time, however,
litigate against businesses was dramatically reduced, which would limit potential
liability. In order to permit fewer people the chance to access resources and
accommodations, the ADA definition was made morc restrictive. An amend-
ment introduced to the ADA in 2008 was designed to refocus the definition of
disability. However, peope who need to use eyeglasses continue to be exempt
from the Act (Leonard, 2009), and it remains to be seen what, if any, impact
the changes will actually have.
The ADA is complaint driven. Typically, an individual who has been discriminated against must have the time, energy and resources to engage in the
court system to seek a remedy to the discrimination. In order to be successful,
definitions change depending on the intended outcome. The greater amount
people also need evidence that is often difficult or impossible to obtain. Also,
of access to resources and rights a piece oflegislation involves, the stricter the
litigation requires resources - resources that many people do not have access
to; 'ho:wever} many property owners} businesses and corporations have ample
resources to defend themselves in the courts.
definition becomes. Upon the examination offour legal definitions ofdisability
that are used in the Americans with Disabilities Act (ADA) and Supplementary
Security Income (SSI) in the United States, and the Accessibilityfor Ontarians
with Disabilities Act (AODA) and Ontario Disability Support Program (ODSP)
in Canada, the way that legislation and legal precedents influence social definitions of disability becomes clear.
In the United States, one ofthe most widespread definitions of disability
is outlined in the Americans with Disabilities Act (1990). The ADA defines
disability as "a physical or mental impairment that snbstantially limits one or
more major life activities ofsuch individual;' and/or having a "record of;' and/
or being "regarded" as, having an impairment. This definition was interesting
because it diverged from the medical model, in part. It used a more rights/social
model definition because it included people who were "regarded" as disabled.
However, in 1999, the U.S. Supreme Court tightened the definition of
disability under the ADA. People who had "easily correctable" disabilities like
nearsightedness (with glasses) or high blood pressure (with medication) were
no longer considered disabled. They were told, according to Michael Berube
(2093: 54), that they "had no basis for a suit under the ADA precisely because
their disabilities were easily correctable:'
This meant people filing suit nnder the ADA were "too disabled to be hired
but somehow not disabled enough to be covered by the ADA; or, to put it this
way, plaintiffs' <easily correctable' disabilities were not so easily correctable
as to allow them access to employment" (Berube, 2003: 54). The broad ADA
definition ofdisability did not legallyprotect disabled people from discrimination because the U.S. Supreme.c:ourt found that 160 million people would
be classified as disabled (54).1ft'ls number was considered too high, so the
definition was shifted to accomm6date (wealthy) business owners rather than
victims of disablist discrimination. The number of people that were able to
Further, the ADA, like the other acts I will discuss in this section, qS>'csnothingto address
and, while it appears to be broad and encompass
a great number ofpeople, the actual number ofpeople who successfully pursue
litigation is quite small. From July 1992 to September 2005 there were over
230,000 claims filed under the ADA for employment discrimination. Ofthese,
roughly 33,000 (Jess than ] 5 percept) ended in favour ofthe complainant. Ouly
2.2 percent ofsuccessful claims were actually won through the courts, the rest
were settled or otherwise resolved (Winegar, 2006). While this legislation has
helped specific individuals remedy discrimination, its overall impact is nowhere
near what is needed to undermine disablism in the United States.
Canada does not have federal disability legislation that is comparable to
the ADA. The Canadian Charter ofRights and Freedoms (1982) protects against
government discrimination on the grounds of disability (which is undefined
in the law). Additionally, each province has a human rights code that contains
protections for disabled people. However, human rights law does not necessarily
entail physical inaccessibility or lack ofinterpreters, for example. Like the ADA,
however, this legislation is largely complaint driven.
In Ontario, the country's most populated province, there is disabilityspecific legislation: the Ontarians with Disabilities Act (ODA) (2001). This law
only requires governments to make accessibility plans, not actually to take
action. In 2025, the ODA will be replaced by the Accessibility for Ontarians
with Disabilities Act (2005) (AODA), a piece oflegislation much more similar
to the Americans with Disabilities Act. The ODA and the AODA define disability
as "any degree of physical disability, infirmity, malformation or disfigurement
that is caused by bodily injury, birth defect or illness ... mental impairment or
a developmental disability... a learning disability... [or] a mental disorder"
(Ontarians with Disabilities Act, 2001: 2. (1) (a); Accessibilityfor Ontarians with
Disabilities Act, 2005: 2. (a)).
This definition is incrediblybroad, but provides little meaningful assistance
for disabled people. Additionally, the government has refused to enact
section making it an offence to break this law, so it is essentially useless
ofcourse to the governing partywho enacted the law, as they received extensive
positive media coverage from its passage (Lepofsky, 2004).
Where the benefit to disabled people is greater and has ameaningfulimpact
on people's lives, the definition of disability becomes much more restrictive.
Supplementary Security Income (United States) and the Ontario Disability
Support Program provide (measly) montWy amounts to people on disability
who are declared unahle to work. They both require medical documentation of
conditions that are terminal or will last at least a year (Social Security Online,
2010; Ontario Disability Support Program Act, 1997). Disahility, in the case of
Supplementary Security Income (SSI), must lead to an inability "to engage in
any substantial gainful activity" (Social Security Online, 2010), which to the
American government means productive, paid employment. With respect to
the Ontario Disability Support Program (ODSP), the definition also involves
a "substantial restriction in one or more ... activities of daily living;' which are
personal care, paid work or operating in the community (Ontario Disability
Support Program Act, 1997: s4. (I)(c)).
Neither 55I nor ODSP account for systemic discrimination in employment;
this means that there are disabled people who cannot work because they are
disabled (because no one will hire them), but cannot access disability social
assistance because they are not disabled under the legislated definition. The
ADA and human rights legislation are supposed to remedy this, but they don't,
just as civil rights legislation did not end employment discrimination on the
Looking Back but Moving Forward 1113
under certain pieces oflegislation, this is primarily not to benefit us but rather
to benefit those in power.
The same government that celebrated itself for passing the Ontarians
with Disabilities Act arbitrarily changed the definition of disabled for social
assistance, which led to thousands of people no longer being considered
disabled (Toughill, 1995) and hence no longer eligible to receive financial
support. Similarly, the conservative government in British Columbia redefined
disability and required people receiving assistance to submit twenty-three
pages of forms to re-prove they were disabled in order to retain their benefits
(Lavender, 2003).gln the United States, the 1996 Personal Responsibility and
Work Opportunity Reconciliation Act redefined disability, resulting in 100,000
children losing their henefits (American Academy ofPediatrics, 2001). These
were all made more restrictive in order to reduce benefits for many
people and to save the government money.
When there is little or no benefit, but lots of stigma, to being disabled,
definitions are broad. But definitions increasingly narrow as the level of and
access to resources increases. These definitions, like all definitions ofmarginal-
ized people, are used as forms ofcontrol, creating large groups of"others" when
it is useful. Further, these definitions remain under the control of those with
power and can be changed to serve their needs and desires.
Who Is Disabled?
People are disabled. We are disabled if those in power say we are. This is an
identity that is fully out ofour control. However, because it is out ofour control,
there are some people who are not allowed into the disability grouping because
they need to access resources. By denying people the identity ofdisabled they
are automatically refused resources, accommodations, social assistance and
grounds of race or racism in general. Because there is a discrepancy between
human rights protections. 1his is the plight ofmany people with non-apparent,
who counts as disabled under the ADA and under SSI, there is a class ofpeople
who are unable to obtain employment and are unable to get income support.
The'se people are disabled only when it is to other people's benefit, not their
own.
or "invisible," disabilities. Further, as long as our communities remain classified
Implications of Definitions of Disability
When people actually get access to money, accommodations, equipment or
attendant care, such as those individuals defined under social assistance legis-
lation like SSI and ODSP, the definitions of disahility are rewritten, classifying
very few people as disabled.
legislation that is general, like the ADA and,
espeCially, the ODA, the definitiorl'is broad and aimed at reaching as manyvoters as possible. While there may be some benefit to being defined as disabled
in the category of disabled, rather than hold the power to create the category
itself, we will have a divided disabled community, one that is unlikely to build
unity and a base of resistance together. So, who is disabled? Anyone who is
identified or who identifies as disabled.
As Tom Shakespeare (2006b: 77) contends, "Defining disabilityin terms of
social barriers or social oppression, rather than a biological impairment, opens
up the category to a range ofother socially excluded or devalued groups:' The /
...
problem with this argument is that it assumes that biological impairment and \,
social oppression are severable, which they are not. Shakespeare takes opposition to, for example, fat people being included in the disability identity group.
However, I argue that fatness is a disability. Obesity is a medicalized
t-'
condition and commonly regarded as a disability - at least depending on the
definition. In Cook v. Rhode Island Department ofMental Health, Retardation,
and Hospitals (1993), the court found that Ms. Cook was disabled under the
ADA. She was a fat woman who was not hired because she was
to
be disabled by her obesity. The ADA defines a disabled person who h[s,' or is
regarded as having, substantial limitations performing "major life activities:'
One ofthese activities is working, and Ms. Cook was unable to work because
she was regarded as disabled; therefore, she was disabled under the law. This
was a curtail case as Cook continues to have positive employm,ent implications
for fat people (Carpenter, 2006). An interesting circular definition ofdisability
was established in this case, wherein if someone is fat and perceived to be
disabled and that perception prevents them from working (or doing any of a
number ofother activities) then that person is disabled. This First Circuit court
demonstrates what a radical understanding of disability looks like: those with
power (the employer) considered someone as disabled, treated her as if she
was disabled and, therefore, she was disabled.
-jThe correlations and/or intersectionality between fatness and disablism
have also been discussed by a number of authors (Aphramor, 2009; Rowen,
2006; Herndon 2002; Cooper, 1997). Like other forms ofdisability, the definition ofand the attention paid to fatness or obesityhas shifted with social values.
Charlotte Cooper (1997: 33) writes, "Many fat people ... grow up fearing our
own bodies in shame, public ridicule and social ostracism and the cultural fear
and hatred ofus can ruin our lives. I believe that self-defining as 'disabled' enables
us to take ourselves seriously and demand others do also:' April Herndon (2002:
122) asserts disability needs to be understood "as a diverse social category that
can meaningfully incorporate fat embodiments." Cooper goes on to say, "Fat
people's demands are regarded as trivial compared to those ofdisabled people;
thus, the notion ofcivil rights for fat people is little more than a joke" (1997: 33).
Shakespeare and other disabled authors and activists perpetuate the triviaBzation offat people's experiences and demands by their conscious exclusion
of fat people from the disability umbrella. Further, as disabled people have
so commonly been the brunt of the other end of this dynamic - the ones
excluded, the ones who have had their oppression supported by groups trying
to reduce theirs - we should not be doing the same thing to others.
Some people raise the concern that there will be people who identify as
disabled who aren't actually disabled (see, for example, Shakespeare, 2006b).
However, people do not claim marginality of their own choosing. There may
be extreme or hypothetical ciri:!!>mstances in which such a situation might
occur) but it doesn't make sense
exclude people based on imagined worse
case scenarios. Ifwe fail to let people self-identify as disabled, we also run the
L.ooking Back but M.oving Forward /115
risk of legitimizing the medical model of disability, as it is the primary and
oftentimes exclusive mechanism for labelling disability. Self-identification is
the only way that people claim membership in the queer community and it
has worked out fine. Imagine if queers were afraid that straights would start
identifying as queer in order to get access to the few benefits that we have
(equity hiring and awesome parties) that we made people go to a doctor to
get documentation they were queer.
A parallel example ofthis gatekeeper phenomenon is when women-only
spaces exclude trans women. This is often justified on the basis that a man
could come into the space) say he is a woman and be violent. In reality, a man
or a woman could come into that space and be violent. In a situation like that,
which is an imagined worst-case scenario, you deal with the behaviour at
the'tit1?-e. As someone who has done training for homeless shelters, some of
which were women-only spaces, I have had this same conversation a number
oftimes with staff and residents. For the most part, I do not think that people
raise issues out of malice but out of fear. The reality is that these hypothetical
situations aren't going to happen, and if they do, we can collectively deal with
the situations that arise.
Further, because disablism is so deeply internalized in many disabled
people, we may be hesitant to ask for accommodations. In my experience with
the disabled people in my life, we don't "abuse" accommodations: we ask for
fewer than we need or than would be helpful. There is a tremendous amount
of stigma around disability, so disabled people are less likely to ask for what
we need, not the other way around. Forcing people to prove they are disabled
is not the solution to the hypothetical problem ofnon-disabled people saying
tbeyare disabled in order to gain advantages.
Disabled people have been overwhelmingly excluded from society. Our
community shouldn't replicate the same problems. Disabled people's spaces
can be empowering and important to our sense ofwell-being and belonging.
We need to relearn ways ofbuilding community, rather than replicate the flawed
divisions that have been forced on us for so long.
Difficuity and Trouble: Real Experiences of Being Disabled
Because many disabled people find pride in our disabled minds and bodies,
this doesn't mean tbat we don't have difficulty with them. Sometimes, we do.
But these difficulties are not because we are disabled; we experience them
because we are human. Everyone gets frustrated with their minds and their
bodies at some point. In spite ofdisablist discourse, this is not unique to those
ofus classified as disabled.
One ofthe key criticisms ofthe social model has been that it does not give
space for people to talk about the difficulty that they have with their minds and
bodies. Over a decade ago, Michael Oliver (1996) countered this criticism,
: f saying that there just needed to be a social model ofimpairment to complement
/ the social model of disability. However, within the hegemony of thelPcial
model, there has been an understanding that there is a separation betWlieh our
political, public presentation and our private lives (Tregaskis, 2002).
To say we should just wait for a social model of impairment is simplistic
and dismissive. I feel a lot ofpressure from social modelists not to talk about
the trouble that we have with our disability labels and our minds and bodies.
I feel a responsibility to our fight for justice not to say certain things. Tom
Shakespeare writes:
We need to create space, within a radical theory of disability for people
to talk about our difficulties. This does not mean that people who are identified as disabled necessarily have more trouble with our minds or bodies than
non-disabled people. This does not mean that our diffi.culties are permanent
or stagnant; rather, our perceptions of our minds and bodies shift depending
on any number offactors.
We refuse to talk about our lives, and our troubles around them, instead of
talking about them openly within a radical framework. As a result, all it takes is
one Christopher Reeve (1998: 287) calling for a cure and saying "merelybeing
alive is not enough" to reinforce the disablist notions that our arguments are
wrong and
OUf
lives really are worth less, or even worthless.
OUf politics
Many disability rights campaigners concede that behind closed doors
they talk about aches and pains and urinary tract infections, even while
they deny any relevance of the body while they are out campaigning.
Yet this inconsistency is surely wrong: ifthe public rhetoric says one
thing, while everyone behaves privately in a more complete way,
then perhaps it is time to re-examine the rhetoric and speak more
accurately. (2006b: 52)
There is, however, a real fear for me, and I would guess the same for many
others as well, to talk about my difficult experiences with my body. A few years
ago, I wrote about how hard it is:
I am afraid that I will help fuel the fires of hatred against disabled
people. IfI say that [my life can be painful and isolating] that could be
used to snpport the argnment that disabled people do not have full and
rewardiug lives. If I address the difficulty that many disabled people
have accessing support and the tension that that puts on personal
relationships it could be manipulated to contend that disability should
be eliminated to spare parents from the burden of having a disabled
child. If! talk about the depression, and even the sense ofworthiessness, that can go along with chronic illness, chronic pain, and limited
access it might be twisted around to bolster the position that we aren't
worthy ofIife. If I honestly talk about the struggles that I endure on
a daily basis what we have to say about our lives and the world may
be reduced to inspirational material rather than meaningful and
important interpretations ofthe world around us. (Withers, 2007: 36)
These are the secrets I have kept
keep secrets.
order to help to build a movement. We all
cannot draw distinctions between our public and our private
lives. We cannot draw arbitrary lines down our lives, leaving out parts of our
lived experiences because they are not convenient to our arguments. We need
a disability politic that is true to our lives, one that doesn't make us keep secrets
- secrets that ultimately weaken our arguments.
Disability pride can co-exist with our real minds, bodies and lived experiences, which can include the joys and the difficulties that our diversity brings.
Perfectly healthy people who never struggle with their minds and bodies,
who are never challenged by them, do not exist. '!his "ideal" is a construct to
perpetuate disabled people's marginalization. Evolutionary biologist Marlene
Zuk argues that diseases have evolutionary purposes and are a basic presence
in all of human existence. Zuk (2007: 10) cautions against a war on disease:
"What we should hope for is not victory, but reconciliation:' Reconciliation,
with respect to disability, would mean an acceptance of human diversity,
including the fact that we all have different minds, bodies, needs and abilities.
It would mean welcoming the different perspectives that this diversity brings.
The kinds ofpeople who are currently labelled disabled have always been
a part of our population and offer important perspectives and contributions.
Disabled people are often celebrated for our accomplishments in spite of our
disabilities (people like Franklin Roosevelt and Helen Keller). We are rarely
recognized for the contributions we make because ofour disabilities. For instance,
when I am having a hard time walking, 1walk very slowly and 1 notice a lot of
what is around me. Because I experience the world differently than many of
the people around me, I have a unique and useful perspective.
Radical Access
Within the disability rights and social models, accessibility means different
things depending on who you are talking to and when you are talking to them.
Ideas ofaccessibility were often more restricted and solely focused on physical
access (i.e., lifts and ramps) in decades past, but the ideas surrounding access
have begun to expand.
Like all disability models coming from disabled people, one of the key
means that one strives to communicate in ways that are easilyunderstood. It also
means that oppressive language is not used. This includes disablist language,
which is pervasive within North America and the Left. Sometimes, however,
issues is access. However, the radical model does not advocate solely for ramps
words do have multiple meanings according to the dictionary: "paralyze" can
and lifts - though physical accommodations should always be
We
advocate and agitate for radical access. Access needs to be addressed collectively,
across bodies, boundaries and borders. Radical access means acknowledging
systemic barriers that exclude people, particularly certain kinds ofpeople with
certain kinds of minds and/or bodies, and working to ensure not only the
presence ofthose who have been left out} but also their comfort} participation
and leadership. Spaces that need to incorporate radical access principles are
organizational, they are educational and institutional, but they are also the
spaces closest to us: our cafes, OUf officesJ our homes and our hearts.
mean to fully stop; "deaf" can mean to refuse to listen; "disable" can mean to
break or turn off; and "crazy "can mean ridiculous. But} as Chris Chapman says}
Radical access is not about "universal design" or universal access -
that is
while these words "have acceptable usages about things other than people, in
terms ofwhat dictionaries say, I would suggest that it is impossible to use these
words without evoking people." Chapman (2010, n.p.) argues that "whatever
dictionaries say - it would be impossible for me to say 'gay' and have it only
signify 'happi" Double usage or not, disablist slurs need to be stripped out
of everyday langnage if we want to create spaces where disabled people feel
welcome and wanted. No space is ever accessible ifoppressive language is being
used} no matter what other measures are taken to make it so.
an arbitrary and fictional concept. According to Ron Mace, the man who coined
the term "universal design;' it is "the deSign of products and environments to
Conclusion
be usable by all people, to the greatest extent possible, without the need for
adaptation or specialized design" (Center for Universal Design, n.d.). The
problem with this concept is that people and their needs change. An obvious,
and unfair, example is that ifa building that fits a universal desigu or access mould
is in Finland and I cannot go to Finland, then it isn't accessible to me. However,
This model would not have been possible to imagine before the disability
rights movement, the social model or the important work of many radical
activists and thinkers. There are also many directions this model could go in.
For example, there could be important shifts in language. For instance, the
term disability justice is used, largely on the West Coast of the United States,
to radically respond to the disability rights movement. Also, a disabled friend
of mine, Amanda Dorter, has started using the word "disablized" to talk about
disabled people in order to better indicate the imposition ofthe disabilitylabel.
even if the building is downtown, but transit is expensive and I don't have the
money, or if! am a Black man and the streetcar refuses to stop to let me on, or if
1am a wheelchair user and the streetcar is not phYSically accessible to me, that
building is not universally accessible. Access doesn't just begin at the front door.
When 1was much younger and was relatively new to activism, 1frequently
talked about identity groups exclUSively as groups, not about the many individual people who make up those groups. One of the most valuable things
that developing the radical disability model and radical access polities have
taught me is that I cannot simply paint groups with one brush. Access politics
demand that we treat people as people and look at each ofour needs and how
to collectively meet them. While there are specific, basic demands that we need
to put in place to ensure some standards ofacceSSibility, each ofus has our own
needs, and access should be collectively negotiated between everyone involved.
This negotiation is never neutral and cannot take place without considering
present-day oppression, as well as the histories ofoppression. This negotiation is
not about creating room for people in spite oftheir marginality but recognizing
that everyone deserves space and\!!at their membership in an oppressed group
brings perspectives and
that are not only welcome but wanted.
Radical access also includes intentional and accessible use oflanguage.This
As people begin to see themselves, and others} in increasingly radical ways) our
politics and the words that we use to talk about them will evolve.
It is important, however, that the fundamental tenets ofthe model - the
necessity of recognizing and relating to intersectionality, that disability is a
social construction, that the disability label is imposed as a tactic to retain
power and social control and that we have to create space for each other both
in terms ofacknowledging our lived experiences and ensuring accessibility-
remain intact. Rather than perpetuating unrealistic ideals for humans, radical
disability theory calls for reassessing and revalUing people. We should not be
penalized for falling outside of arbitrary and unjust norms ofproductiVity and
independence. There is nothing wrong with us. We should be celebrated for
our diversities and our perspectives.
Radical access and radical disability theory are not fringe ideas - they are
fundamental ideas looking at the essence ofwhat disability and access mean
for everyone. Radical disability theory is about fighting to redistribute power
and resources and creating accessible spaces and communities.
By fighting to make it happen, I literally mean thatwe have to fight. Radical
access and an end to disablism will never be handed to us. We have to work
together to demand and create change. We have to move beyond the identity
politIC ofphysical access and work to create access for all. We have to
and consistently confront OUf own actions and ways ofreinforcing
Perhaps most importantly though, we must organize. We must work in solidarity
with other marginalized groups, and we must get past our differences and fight
for justice, dignity, equality and access.
Notes
1.
I am putting this theory forward, it was collectively developed, particularly
with
Erickson. Griffin Epstein has also been integral to its articulation,
espeClallythat of radical access.
2.
I have avoided including anthologies or books that contain a number of chapters
and discuss multiple oppressions because this frequently amounts to tokenism,
rather than inclusion or intersectionality. The same is true ofa work that minimally
talks about intersectionality.
3.
4.
This particular reference is in relation to inclusion in schools.
Early mainstream gay rights activists did not just work to establish themselves as
Like first-wave and second-wave feminists
non-disabled, but also as
gay
activists erased the plethora ofracial and cultural
from theIr populatIons to gain access to privileges for the white people within
that identity group. Its leadership actively upheld that homosexuals were more
oppressed than Mrican Americans. Kameny (1965: 12) said: "In this country
an individual known to be a homosexual would find it more difficult to get an
education, at any level, in the school of his choice (or) in fact, in any school at
alI) - than would a Negro in the South." This statement, while likely false, failed
to acknowledge Black queers and trivializes the struggles of Blacks in the South.
!he early mainstream movement also presented a specific class and gender role
Image ofhomosexuals, Demonstrations required that participants follow a dress
code, requiring gender appropriate business attire (Alwood, 1996; Kissack, 1995),
gay liberation movement, as opposed to the mainstream gay rights movement,
dId have an anti-racist, anti-sexist, anti-war, anti-consumerist, ifnot anti-capitalist
5.
platform (Rimmerman, 2008).
6.
notable exception to this pattern in public transit campaigns by disabled people
a
disabiI ity organization in Toronto. DAMN has campaigned
for accessIble tranSIt for all using a radical access approach rather than a disability
rights approach,
IS that of
7.
8.
Frequently, disabled people are seen as non-gendered or our disabilities are
understood as our genders,
Later, this was changed so peoplilt}ith certain diagnoses did not have to do it.
References
Abbott, Anne. 2011. Personal interview. Toronto, August 27.
Accessibilityfor Ontarians with DisabilitiesAct. 2005. S,O. 2005, Chapter 11, last amendment: 2009, c. 33, Sched, 8, s. 3.
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<adpunch.org/entry/ metlife-foundation-alzheimers-disease-steals-normal-life>.
Adelson, Betty M. 2005. Dwarfism, Medical and Psychosocial Aspeets ofProfound Short
Stature, Baltimore: Johns Hopkins University Press.
Ahmad, Waqar LU. 2000. "Introduction:' In Waqar LU. Ahmad (ed.) ,Ethnicity, Disability
and Chronic Illness, Buckingham: Open University Press.
AUbey v. Canada (Minister ofCitizenship and Immigration). 2004 FC 305.
Alland, Alexander]r., Michael L. Blakey, C. Loring Brace, Alan H. Goodman, Stephen
Molnar, J. Phillippe Rushton, Vincent M. Sarich and Audrey Smedley. 1996.
"Review: The Eternal Triangle: Race, Class and 10;' Current Anthropology 37, Sl
(February).
Alwood, Edward, 1996. Straight News: Gays) Lesbians} and the News Media. New York:
Columbia University Press.
American Academy ofPediatrics, 2001. "lhe Continued Importance ofSupplemental
SecurityIncome (58!) for Children and Adolescents With Disabilities:' Pediatrics
107, 4 (April). <aappolicy.aappublications.org/cgilcontent/abstract/pediatrics;107/4/790>.
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AboutUs/WboWeAre/AnnualReport/201O-annual-report>.
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American Psychiatric Association. 2000. Diagnostic and Statistical Manual ofMental
Disorders: DSM-IV-TR. Washington, DC: Psychiatryonhne, <psychiatroyonHne.
com>.
Americans with DisabilitiesAet of 1990 (ADA) 104 Stat. 327, 42 USC § 12101 et seq.
Aphramor, Lucy. 2009. "Disability and the Anti-Obesity Offensive:' Disability and
Society 24, 7.
Arad, Yitzhak. 1987. Belzee, Sobibo", TrebUnka, The Operation Reinhard Death Camps.
Bloomington, Indiana University Press [1999].
Arthritis Society. n.d. <arthritis.ca/arthritis%20home/default.asp?s:= 1>,
Ashby, Chris. 2010. "The Trouble with Normal, The Struggle for Meaningful Access
for Middle School Students with Developmental Disability Labels." Disability
and Society 25, 3.
Aszuba and Salvation Army Sheltered Workshop et al. [1983] OJ. No. 2982.
Sins Invalid: An Unshamed Claim to Beauty
In the Face of Invisibility
Patty Berne
Like many good stories, the early threads of this one were woven over
dinner, a large bowl of saffron laced paella, steaming on the table
between two good friends. Leroy Moore and I were excited over his
recent collaboration with Todd Herman – a film entitled Forbidden Acts
that intertwines Leroy’s randy poetry with tasteful yet explicit cock and
body shots – and sharing dismay that most people can’t seem to
conceive that people with disabilities are sexual, let alone sexy.
Patty Berne
my forehead pressed hard against the cool wall
sweat slips across the base of my neck
leaving a salty trail for your tongue to track
should you choose to follow.
i inhale slowly in synch with your fingers' penetration.
your wrist corkscrews circles getting smaller
a zen garden in my flesh
and i am pinned by your round shoulder to the wall and i open
my mouth to taste plaster breathing
you a wordless whimper of ecstasy.
you hiss into my ear that i am a good puppy girl
open all the way for you my cunt my heart my ass my mouth my mind everything
open to your fucking vulnerable and so wanting.
a knuckle presses the base of my hole and you uncurl a third finger up
between my walls and you begin to thrust and i begin to chant your name daddy
daddy please feed me daddy
and you do filling me with a deep breathless undulating fuck
each push taking more and your arm begins to pound.
my mind spins a cacophony of screams to the meter of your voice
because here is your sweet girl sweet girl sweet girl tighter
good whore daddy's whore pretty whore tighter
little toy fuck toy baby toy squeeze touch
touch there daddy please scratch there there please and i am spread
open pumping you stretched out needing you moan i push ignite ignite we ignite to
catch pulses pulses it pulses and i catch
fire branded and i
come to you
alive
with awe.
- patty berne
sins invalid 2006
We’ve both been disabled since birth, and bluntly, we’re both pretty hot,
and we both humbly know it. Still, every day throughout the day we each
struggle with the disconnect between what we know to be true about our
beauty and the passion of our lives, and what the world seems to believe,
that we are less than, undesirable, pitiable… it’s hard, to know that you
have been blessed while others seem convinced you’ve been cursed.
Patty Berne
Leroy F. Moore, Jr.
Excerpt from Swimming against the Stream
Sins Invalid 2006
Mmm, my sperm
here it comes
watch out!
My sperm has history swimming against the stream
My sperm has been rejected, feared, studied and labeled
dangerous by the mainstream
My sperm has caused scientists to write books
Politicians to write laws
Doctors to write prescriptions
My sperm put the fear in Charles Darwin, slave masters and Hitler
My sperm has women running to the doctors
My sperm has been swimming against the stream
My sperm gave birth to the eugenics movement
My sperm is in test tubs marked “DAMAGED!”
My sperm has been swimming in deep shark invested waters
My sperm, you think could cause one, two or worse a whole
generation like me…
So, being an activist and an organizer, we did what we know how to do –
organize. And a performance event on sexuality and disability was in the
process of being born – Sins Invalid: An Unshamed Claim to Beauty In the
Face of Invisibility.
Well, truth be told, at first it was going to be a small video screening for a
few friends in a local café…and our early working title still conjures up
images of bloody puddles in my mind. But the universe often offers
unexpected gifts, in this case manifesting as our friends and veteran artists
Todd Herman and Amanda Coslor. We told them about our idea and
they offered to collaborate, contributing massively toward the aesthetics,
contacts, available resources and experience. Sins Invalid then had a
dedicated core group, moreover, a family. And to top it off, we then had
a fiscal sponsor – The Dancing Tree.
But, let’s backtrack for a second – what’s so innovative about this show?
Well, besides the obvious “have you ever been to an erotic event
featuring people with disabilities?”, let’s take a look at the context in
which we live. We know that our culture maintains embodied and
Patty Berne
enforced “norms”, norms that constrict all of us with unmet expectations
and fears of the repercussion of not “measuring up”. Regardless of where
we identify on the spectrum of sexuality, gender, size, ability, age, class,
etc., the boundaries of our normalcy get policed. And when we
transgress boundaries by having different abilities, gender presentation,
etc, we are at risk of social and economic alienation, hostility, threats to
safety / violence and the deepest acts of dehumanization – the implied
and at times explicit message being that “they” (insert any oppressed
group here – people with disabilities, African descended people, poor
people, immigrants without state documentation and on…) are a
different kind of human, “they” don’t feel or think as we do, “they” don’t
deserve what we have, “they” are less than us.
To bring the issue to the body, the definition of the “normal” body is
becoming ever narrower, to the extent that even the natural process of
growth and aging is seen as a problem to overcome. People with
disabilities are often seen as “flawed” beings whose hope of normalcy
rests in the “medical model”.
Hold up – you gotta trust that this tangent into political framing is
central to the telling of the story, okay? Cool.
The “medical model” is a way of looking at a person w/a disability. The
“problem” resides in that person’s body, and the solution is to “fix”, cure or
in some way modify that disabled person to fit into existing conditions and
frameworks.
Hhhmmm…there’s something missing in this medical model…
can it be an analysis of power?
The disability rights movement articulated another lens of viewing disability
– the social model. With this view, we understand that the “problem”
resides in sociopolitical and economic structures which exclude an array
of people and abilities, and the solution is social and institutional change.
This should resound familiar with folks from a social justice perspective. But
still let’s make sure we’re clear. Let’s say I go to a building which has stairs;
my wheelchair does not climb stairs. Is the problem that I cannot walk up
stairs? Or is the problem that the building owner and architect did not
create a building which allows entrance to people with a variety of
means of mobility? Is the problem my body? Or is the problem being
excluded because my body is different than the building owner’s?
Patty Berne
As people with disabilities, we are not oppressed by what we can or
cannot do with our bodies or minds. We may be inconvenienced by
living with an impairment, but what oppresses us is the systemic prejudice,
discrimination, segregation and violence we face because we do not fall
within a perceived “norm”.
And the real irony is none of us do.
As social justice advocates, we know there must be avenues for
resistance to oppression and celebration – and here is the power of Sins
Invalid. We challenge dominant notions of the disabled body and
sexuality because we understand it is key to challenging the oppression of
people with disabilities; moreover, our performers offer stories and visions
affirming our strength as people with disabilities, creating beauty in which
we are centered.
So, meanwhile, back to our laptops and cell phones, we had a show to
create – yowza!
Leroy, Amanda, Todd and I began meeting in my tiny plant-filled living
room to plan the show. A call to artists was placed and by the end of an
arduous selection process we had a phenomenal group of artists defying
norms, committed to speaking their truths about their bodies, their desires,
their visions for the world – and not surprisingly given who we are – folks
were mostly brown and black, mostly queer and genderqueer, 100%
compelling.
Patty Berne
Powerful people with stories to teach – from ‘ron daniella, mixed race in ancestry
and living genderqueer with multiple disabilities, storytelling about his childhood
masturbation before he slowly strips to the deep thud of a triphop track to reveal his
sinewy body and a ten inch dildo – tocrone-to-be solidad decosta delivering
spoken word on living intersexed with eye contact so direct it burned the seat
cushions; from dignified and flirtatious Lee Williams, an African American man
perched in his wheelchair and in his 7 th decade of life entering the stage and baring
his heart with the grace earned only through experience – to shy smiling Noemi
Sohn describing the sexual and comic tensions of her first kiss in her home country of
the Philippines while swaying to Marvin Gaye in the meter of cerebral palsy; from
spirit infused Lisa Thomas-Adeyemo recanting poem, vignette and song in sensual
mahogany tones – to Ron Jones, deeply thoughtful and artful moving in his
meditative recreation of sunset skinny dipping; from fierce femme Leah Rae “spittin’
poetry like fire, upliftin’…” to Lady Venus in full “fat ‘n fabulous” burlesque glory as
the MC.
And that wasn’t even the video artists – Todd Herman, Thanh Diep, Leroy Moore,
Oriana Bolden, John Killacky and myself.
Next, we had to develop the look of a show which was simultaneously
erotic and communicating resistant politics. It turned out to be easier
than one might think, because people claiming their bodies and desires
for liberation are tender and powerful and fierce – and that’s sexy.
A central part of our process was leadership development. As a whole,
the progressive left in the U.S. has not addressed its ableism1, making itself
less than hospitable to people with disabilities. Regrettably, the radical
left has not done much better. At the same time, to quote Millee Hill from
her book Black and Disabled in the Arts, "The disability world contains the
same schisms, 'isms' and inequalities that exist in society generally, and the
world of disability arts is no exception in reflecting institutional racism." We
saw and continue to see Sins Invalid as a place where people with
disabilities can incubate a radical political analysis and their skills as artists,
particularly those who don’t see themselves represented in the ranks of
disability rights/disability culture/disability studies due to race, class,
gender presentation, etc.
Given this priority, our process looked like a hybrid between a community
based organization and a performance – facilitated meetings where we
shared updates about the show as a whole, performed for each other to
1
ableism: a set of practices and beliefs, embedded in institutions, which privileges people without
disabilities and reinforces that non-disabled people maintain power
Patty Berne
hone the on-stage work, and engaged in political discussions about our
message; one on one’s between performers and Leroy Moore or myself to
support the process of disclosing both personally and politically on stage –
after all, folks were exposing both their bodies and soul; and, for a
performance event, a great deal of collective decision making…that is
until “tech”.
Tech was, well, in my opinion…hell. The only thing that got us through it
was the trust that had developed, the collective commitment of the
group, and the intermittent splash of brilliance. But it was still wildly stressful.
Things had to be done, and decisions made – quickly. It didn’t help that
many folks, including me, were learning what one does during tech as we
went along(design the show in the theater space; coordinate lights,
sound and performer cues amongst all tech operators).
Note to reader: event organizing and running a performance are
two very different beasts!
Nor did it help that, given cost, we had a tech day. Lots of people have a
tech week. There were last minute coordination mishaps between the
theater’s technical director and the lighting interns from the local high
school. We had equipment failures, including last minute projector
freezing and mics not working. Leroy injured his back moving a table, a
performer showed up ill, a minor conflict between personalities
erupted…it was wild.
And, when the lights went down and a hush went through the audience,
the magic unfolded. Three hundred people witnessed disabled artist after
disabled artist, talking about desire, displaying our bodies and doing it in a
way where we were setting the terms of engagement. We moved the
audience through a new paradigm, with emotions in the theater shifting
from voyeuristic eroticism to intimacy to loss to anger to risk to aroused by
a new vision of embodiment.
It was beautiful. Sacred for some. A healing happened in that theater.
Artists boldly claimed their bodies as whole and perfect, inviting others to
join, and they did. The love in the room was palpable. The respect was
visceral. In hindsight it’s hard to explain – but I think most transformations
are. At the show’s close, we had a sustained standing ovation. For the
night, we were done.
Patty Berne
As I’m sure many organizers out there know, right after the magnetism of
an event, there’s an equal and opposite push away from the intensity, a
required respite, which can feel like emptiness. There’s a loss – there’s so
much syn/energy in the centrifuge of an event that after the motor
stops…well, there’s a deflation. Which is why, partly for political process
and partly for emotional closure, we held debriefs…We debriefed and
heard pluses and deltas from performers. We held a separate debrief for
our logistics people, Ann Icardi and Maurice Campbell. And as a core
group, Leroy, Amanda, Todd and I debriefed, processed and processed
some more, identifying what we were proud of, what frustrated us, and
what we would do differently if there were ever a next time. And then, in
the weeks following, we received feedback from friends who’d seen the
show. People said they were surprised that a show on disability and
sexuality could be so hot. On the web, we found people with disabilities
who’d been in the audience blogging about us. Scholars in disability
studies approached us. And it became clear, our impact wasn’t just on
that night – we had made a lasting impression on people. We had asked
people to think and it seems that people did.
Solidad DeCosta
Excerpt from intersexed is how it intersects
Sins Invalid 2006
I don't think you can handle my body!
my curves swerve like a bat outta hell
and my lines define something mixed
you see, I am different -- not just reddish
brown mixed-race different or pansexed dyke
different, for while all those things are a
part of me, they are not all of me/there's more/
When I was born, I was whole
My body reflected the realities of both Hermes
and Aphrodite …
No longer full of shame or dread, I am whole again,
and my scars just mark the path to my past
and the rest is just facts which is not the same as truth
because if the medical definition of your biology
is the only reality, where does that leave me?
For I do not consent to my invisibility, I shatter
the glass freak cage and tell it on the mountain
my fountain is receptive, my news is representative
and my life is anything but done…
Patty Berne
So, after a month or two hiatus, we started the process again, but this time
with a few changes, including a longer timeline.
One important piece of feedback we heard was the need for points of
entry into the process. (Of course there were volunteer opportunities on
the night of the show, but clearly that’s rather limited). So in Spring 07 we
facilitated a series of writing and performance workshops for people with
disabilities, and we expect to facilitate two workshop series in 08. The
organizational process around the performance is another component
with which we’d like to engage community members, so next year we
hope to seed an internship program.
A commitment made after last year’s event was to pursue foundation
funding. AEPOCH Foundation expressed a strong belief in our vision, and
started us off on a solid footing. With those funds we hired development
consultant extraordinaire Elaine Beale, who pitched hard and we’ve now
received additional grants from the San Francisco Arts Commission, the
Zellerbach Family Fund, Hewlett Packard Foundation, Potrero Nuevo
Foundation, and the Rainbow Grocery Collective.
With the additional funding, we’re running the show 2 nights this year, with
a serious crew – a stage manager, assistant stage manager, and lighting
designer.
And the show this year – it’s another full on production, with ten live
performers and three video artists. We have artists coming to perform
from around the U.S. and one artist flying in from France. We are in the
thick of it; in fact, this text is being written 53 days until the show. We can’t
describe the show quite yet as it has yet to happen, but we can predict
that it will change people’s perceptions on disability and sexuality, and
hopefully lead into deeper political shifts.
We believe deeply in our work, our process, and our politic. We’ve
gained strength from Audre Lorde, Paul Robeson, Eli Clare, Marlon Riggs,
Otto Rene Castillo, Millee Hill, so many teachers. We want to magnify our
message and engage a greater audience with a claim of beauty and
justice for all people; we’ve decided to visually document the process
and event and make a film about Sins Invalid. This is an incredible
opportunity, of course a whole other layer of work, and at the end of the
Patty Berne
day we expect it to be more than worth the effort. Because we have
stories to tell and a movement to build.
Lateef McLeod
Excerpts from Living with Joey
Sins Invalid 2007
“Just swallow” / You say to me / And I really do try / Cuz I be wearing tight fits / Like
Rocawear jeans, big Ekco shirts, Gap hoodies /And when I am really GQ in a tailor
made suit / And drool does not go with a tailor made suit / You know I try to look
suave 24 7/ So there shouldn’t be a problem with me swallowing, right? / Well I have
to remember to swallow / Every minute / Every hour / Every day / That means when I
roll down the street / Swallow / Whenever I talk to someone / Swallow/ When I
exercise/ Swallow/ When I go to school / Swallow/ Cuz I don’t want anyone to see me
drool, especially you/ You always say that it makes me look gross/ And It is not my
attention to gross you out/ So I try to swallow like a mad man/ I / (swallow)/ Try and/
(swallow)/ Consciously do something /(swallow)/ That everyone else/ (swallow)/ Does
unconsciously/ (swallow)/ And you still/ (swallow)/ Can’t understand /(swallow)/ Why/
(swallow)/ Can’t I / (swallow)/ Learn to swallow/ (swallow)/ All the time / (swallow)/ It
is like /(swallow)/ To toss you a tennis ball/ (swallow)/ Telling you/ (swallow)/ To throw it
/ (swallow)/ In the air and catch it/ (swallow)/ Every 15 seconds/ (swallow)/ And yell
at you/ (swallow)/ When you drop the ball
Swallow/ Just swallow/ Come on and swallow/ You know you want to.
Patty Berne
Maria R. Palacios
Excerpts from My Sexy Disability
Sins Invalid 2007
My disability is sexy.
Sexy like Incan sunsets
that paint oceans
and skies
and awaken the moon in your eyes
when you're with me.
My disability is sexy.
Sexy
like the uneven curves
of South American mountains;
sexy like rose petals
and red lips;
fields
of eucalyptus and pine,
dreams of a derailed spine
and the smell of sex
between my poems.
I am sexy.
Sexy like coffee and books;
cream and sugar to taste.
Go ahead and turn my page.
Read me.
My words
are dragonflies
and shooting stars,
the ridges of my scars
and the grand canyon
of my cleavage.
My disability is beautiful
and sweet.
I'm sweet
like arroz con leche,
and flan,
sweet
like ripe watermelons,
like the scent of mint.
I am cinnamon
and sin.
I am my own
Ave Maria;
Catholic girl gone bad,
21st century Frida Kahlo.
I paint my sexiness
with words.
Patty Berne
Sins Invalid recognizes that we will be liberated as whole beings – as
disabled/as queer/as brown/as black/as genderqueer/as female or male
bodied – as we are far greater whole than partitioned. We recognize that
our allies emerge from many communities and that demographic identity
alone does not determine one’s commitment to liberation.
Sins Invalid is social and economic justice for all people with disabilities – in
lockdowns, in shelters, on the streets, visibly disabled, invisibly disabled,
sensory minority, environmentally injured, psychiatric survivors – moving
beyond individual legal rights to collective human rights.
Our stories, imbedded in analysis, offer paths from identity politics to unity
amongst all oppressed people, laying a foundation for a collective claim
of liberation and beauty.
Disabling Sex: Notes for a Crip Theory of Sexuality
Robert McRuer
GLQ: A Journal of Lesbian and Gay Studies, Volume 17, Number
1, 2010, pp. 107-117 (Article)
Published by Duke University Press
For additional information about this article
http://muse.jhu.edu/journals/glq/summary/v017/17.1.mcruer.html
Access Provided by Western Ontario, Univ of at 11/19/11 8:08PM GMT
DISABLING SEX
Notes for a Crip Theory of Sexuality
Robert McRuer
The time has come to think about disability.
Of course, “Thinking Disability” was not, on the surface at least, what
Gayle Rubin had in mind when she penned the famous opening lines of her 1984
essay “Thinking Sex: Notes for a Radical Theory of the Politics of Sexuality.”1
And, even as I perform a crip appropriation of those lines, I am aware that, for
many, sex and disability at times seem not so much intersectional as incongruous:
“What exactly do you do?” is about as frequent a question for disabled people, in
relation to sex, as it historically has been for many queers. The motivation behind
the question, however, has usually been different. Although stereotypes of the
oversexed disabled person engaged in unspeakable acts do exist, disabled people
are more commonly positioned as asexual — incapable of or uninterested in sex.
Speaking to such expectations, the disability activist Anne Finger wrote more than
a decade ago, in an assertion now well known in the disability rights movement,
“Sexuality is often the source of our deepest oppression; it is also often the source
of our deepest pain. It’s easier to talk about and formulate strategies for changing
discrimination in employment, education, and housing than it is to talk about our
exclusion from sexuality and reproduction.”2
But what if disability were sexy? And what if disabled people were understood to be both subjects and objects of a multiplicity of erotic desires and practices, both within and outside the parameters of heteronormative sexuality?3 With
such attitudes and questions in the background, I want to play with the title of this
brief essay — “Disabling Sex” — stretching it to signify in a couple of different
ways. I do that partly by linking “Thinking Sex” to another text from the same
year that it has, without a doubt, never been linked to before. Deborah A. Stone’s
1984 book The Disabled State is largely a history of varied welfare state policies
(from Britain, Germany, and the United States).4 It is chock-full of facts and statisGLQ 17:1
DOI 10.1215/10642684-2010-021
© 2010 by Duke University Press
108
GLQ: A JOURNAL OF LESBIAN AND GAY STUDIES
tics. It mainly examines the push for restriction or expansion of various programs,
and it is not particularly optimistic (given how consistently those programs collapse or fail). It is often very dry, even if, I argue, it contains some stunning arguments that the interdisciplinary field of disability studies, or any field, might still
attend to. Hence one thing I am doing with my title, “Disabling Sex,” is bringing
the disabled state to bear on thinking sex. And this essay attempts to make the
most of the potential incongruity — if it is not entirely unthinkable that a lover
might say “what’s that juicy opening line from Rubin’s ‘Thinking Sex?’ ” it is a bit
harder to imagine “mmm, talk dirty to me, read me a few lines on the emergence
of SSDI and worker’s compensation from Stone’s Disabled State.”
Cripping Sex
Before staging a quick, promiscuous encounter between the two 1984 texts, however, I should emphasize that Rubin’s famous article is, in fact, already saturated with disability in at least three ways. First, as Abby L. Wilkerson has suggested, Rubin’s “charmed circle of sex” marks an able-bodied/disabled divide,
even according to Rubin’s own terms, since the location she identifies as “the
outer limits” is where many crips end up.5 Here, for instance, are some of Rubin’s
own terms: unnatural, nonprocreative, commercial, in groups, casual, crossgenerational, with manufactured objects. Wilkerson goes on to consider “Hermaphrodites With Attitude . . . men with breasts, ‘chicks with dicks,’ anyone who
is HIV-positive or schizophrenic or uses a wheelchair” and demonstrates that the
project of thinking about particular bodies and practices populating the “outer
limits” could be infinitely extended.6 To add to Wilkerson’s reflections on sexualized practices outside the charmed circle (and some of these are outer limits even
for many inside disability communities): devoteeism; fetishizing of the accoutrements of deafness (or, for that matter, deaf wannabes); self-demand amputation;
barebacking; hospital scenes (whether Bob Flanagan’s very public ones or the
ones staged by any ordinary person who wants to get off in a hospital gown during
a hospital stay); potentially surveilled sex between people with cognitive disabilities in group homes; sex surrogacy (more about that later); or (to specify some of
Rubin’s “manufactured objects”) sex involving crutches, oxygen masks, or prosthetic body parts. Recognizing his own new position outside the “charmed circle,”
one contributor to the Lammy Award – winning anthology Queer Crips takes pride
and pleasure in his location there, noting that he was a pretty average straight guy
until his accident, after which he begins using a chair, thinks in expansive ways
about what he might do with his body, becomes gay, and is open to just about
DISABLING SEX: NOTES FOR A CRIP THEORY OF SEXUALITY
anything kinky.7 Jump to the center of Rubin’s charmed circle, conversely, and you
have what Wilkerson calls “normate sex,” which — following Erving Goffman — is
probably only possible for one or two people; Goffman identifies this imagined
normate as “a young, married, white, urban, northern, heterosexual Protestant
father of college education, fully employed, of good complexion, weight and height,
and a recent record in sports.”8
Second, the “sex panics” Rubin details are invariably about disability
somehow. The disturbance, disorder, and danger that Michel Foucault talks about
in his lectures on the emergence of the abnormal individual are specifically positioned as threats to “public hygiene” and health, and certainly the “increasingly
decomposed, ravaged, skeletal, and diaphanous physiognomy of the exhausted
young masturbator” plays a key role in the story he has to tell, as masturbation is
etiologically connected to everything from blindness to insanity.9 And, of course,
even as Rubin was writing in the mid-1980s, we were learning that “now, no one
is safe” (to quote the famous Life magazine cover): queers, addicts, and sex workers out of control would infect everyone (and essentially kill them, but of course
first comes significant disability).10 Rubin was both aware of what was coming in
relation to AIDS and savvy enough to link the coming panic to earlier historical
moments that were likewise simultaneously about both panic over sex and horror
at what might happen to the body. In her discussion of AIDS, she writes, “A century ago, attempts to control syphilis led to the passage of the Contagious Diseases
Acts in England. The Acts were based on erroneous medical theories and did
nothing to halt the spread of the disease. But they did make life miserable for the
hundreds of women who were incarcerated, subjected to forcible vaginal examination, and stigmatized for life as prostitutes.”11
Third, Rubin’s “concept of benign sexual variation” only really works if we
actually populate and extend it with bodies — bodies that are non-able-bodied, or
rather bodies (and minds) that are simply off the grid of the historical able-bodied/
disabled binary (normate sex may be founded on compulsory able-bodiedness,
but that seems to me the first thing that goes out the window when we theorize
and put into practice benign sexual variation). This point is implicit in what
Rubin initially says about the concept — “variation is a fundamental property of
all life, from the simplest biological organisms to the most complex human social
formations” — and explicit in a range of queer bodily and sexual practices over
the past few decades, from the ways that various lesbian feminist communities
(including attendees at the 1982 Barnard conference that generated Rubin’s essay)
worked to value, include, or eroticize a range of nonnormative bodies (think, for
instance, of Audre Lorde’s imagined army of one-breasted women) to gay male
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attempts to have promiscuity in an epidemic, insisting that all of us are living with
HIV and figuring out what kinds of pleasures might be shaped by taking that fact
into account.12 In these varied queer contexts, “disabling sex” signifies processes
that are much more challenging, disruptive, resistant, and even, well, sexy.13
Around 1984
So what might any of this have to do with Stone’s Disabled State? Rubin’s project
in “Thinking Sex” involved, at least partly, linking emergent forms of sexual hierarchization to the consolidation of industrial capitalism and paralleling resistance
to that hierarchization to struggles around and against the bourgeois mode of production. Stone, as well, was concerned with how newly configured capitalist states
were sorting bodies and behaviors into dominant and subordinated categories. At
the same time that Rubin was insisting that “like the capitalist organization of
labor and its distributions of rewards and powers, the modern sexual system has
been the object of political struggle since it emerged and as it has evolved,” Stone
too was reflecting on distributions of rewards and powers and on how structures of
inequality rigidified in and through that distribution.14
The trajectory of Stone’s analysis, however, is slightly different from
Rubin’s. Stone is certainly concerned with the subordination of disabled people
and with the injustices that attend the disabled state. Yet she approaches these
questions through a textured consideration of how modern states have in effect
utilized disability. Stone examines what she calls “the distributive dilemma” in
modernity and places the social construction of disability at the absolute center of the political struggle to define a given society: in modernity, according to
Stone, “we ask [disability] to resolve the issue of distributive justice.”15 A breathtaking pronouncement, really, and a task that Stone acknowledges disability is
certainly not up to, not least given the contradictory (and unjust) capitalist context
from which this demand emerges. Capitalism first establishes a system where we
are “free” to sell our labor power and not particularly free to do anything else
and then has to manage those subjects who cannot or will not participate in that
compulsory organization of labor. Two distributive systems, one work-based and
one need-based, of necessity arise, and Stone grapples with the wide range of
issues generated by these conditions: first, the various rationales that emerge to
locate people in one category or the other; second, the “validating devices” that
emerge to accompany those rationales, determining “objectively” which system,
work- or need-based, should be operative for a given person (the very fraught and
incoherent notion of a “clinical concept of disability” — that is, a disabled state
that can be observed and noted by authorities — is invented for this purpose);
and, finally and perhaps most impossibly, the ideological maneuvering that kicks
into gear — capitalist societies must somehow “maintain the dominance,” Stone
argues, of the primary, work-based distributive system, even if and as that system
is really quite onerous to most people.16 “Disability,” as a putatively measurable
social construction, is supposed to resolve all this.
Which is where one of Stone’s other major contributions comes in, a contribution that is as simple and stunning as her pronouncement that disability is
called on to resolve the question of distributive justice in modernity. Of necessity,
given the state of affairs Stone describes, in The Disabled State (and the disabled
state), disability emerges discursively as a privileged identity, which is why there
is so much anxiety and suspicion around the disabled “category” and who gets to
qualify for it. I find this 1984 insight incredible for many reasons, not least that
twenty-five years later, if you surveyed the vast majority of disability studies 101
syllabi (including my own), stigma and exclusion would likely be the focus of a
large portion of the introductory material. Like the deviants and perverts outside
Rubin’s charmed circle, disabled people are often positioned in disability studies
as stigmatized (and of course Goffman himself links sexuality and disability, and
his Stigma often shows up on one of the very first days of the imagined courses I
just evoked — indeed, selections from Stigma are in fact the only pre-1970 readings included in The Disability Studies Reader).17
I am certainly not arguing against understanding disabled people as stigmatized in contemporary societies, and neither is Stone: the “privileging” that
she theorizes is itself, after all, clearly a form of subordination and stigmatization
dependent on what Paul K. Longmore terms “ceremonies of social degradation.”18
The privilege of belonging to the disabled category Stone describes is rooted in
stigma because the need-based system has already been positioned ideologically
by the modern state as inferior to the work-based system (or, put differently, has
been invented by the modern state to vouchsafe the superiority of the work-based
system). I am, however, considering how understanding or overemphasizing stigma
as isolation or social exclusion may obscure Stone’s quite nuanced arguments
about privilege. I do not think it wholly suffices, especially in our own historical moment, to account for Stone’s thesis by saying that disability is stigmatized
socially and culturally and “privileged” only in relation to the institutions invested
in measuring disability to resolve the problem of distributive justice. That particular distinction between where disability is privileged and where it is stigmatized
is true, to a large extent, but does not exhaust her points — or rather, potentially
dilutes them and thereby makes it possible to avoid some more difficult or interest-
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ing questions. In 1984, when it was (according to his campaign advertisements)
“morning again” in Ronald Reagan’s America, one could argue — taking seriously
Stone’s linkage of disability and privilege — that Stone facilitates a critique of an
emergent neoliberalism and attends to the contradictions generated by the necessary simultaneity of exclusion and incorporation (from, but also into, the nation
and the state) in ways that queer studies will not fully get around to theorizing
until A Queer Mother for the Nation, Terrorist Assemblages, The Twilight of Equality, the homonormativity issue of the Radical History Review, and — indeed — The
Straight State.19 There is perhaps some of this going on in Rubin’s “Thinking
Sex,” but its explicit focus on the persecution and oppression of nonnormative
sexuality (a focus that was, at the time, of course, absolutely crucial) is much more
obvious than emergent, neoliberal incorporations.
Cripping the State
For disability studies, even as the field sustains a focus on stigma and exclusion,
it is important to keep in view Stone’s oft-forgotten points about the centrality of
privilege and incorporation. For queer studies, it is important to attend to how
a theory of uneven biopolitical incorporation — the incorporation of some bodies
(but not others) into the state — has been part of disability studies for as long as
we have had Rubin’s notes for a radical theory of the politics of sexuality. Queer
studies regularly demonstrates, at this point if not in 1984, how both the state
and the cultural imagination can deploy sex and sexuality to mask exploitation or
oppression in other locations. We are, in other words, used to “thinking sex” in
these ways. My intent in conclusion is to push us toward similar ways of “thinking
sex and disability” together.
I attempt to exemplify thinking sex and disability in our moment via a
brief concluding story of sex surrogacy and the Netherlands (and of course it’s
much easier to tell the story of sex surrogacy via the Netherlands than it is via the
United States — or most other places, for that matter). “Sex surrogacy,” where a
sex worker either works directly with a disabled person or facilitates that person’s
sexual interaction with a third party, is a very contested term. I use it here simply
to tell this particular story, and I recognize that the language for the processes I
discuss is currently in flux.20
In 2001 a man named Hennie van den Wittenboer won a seven-year legal
fight to get help from the social services department in Tilburg. The Dutch Council
in Tilburg agreed to pay for van den Wittenboer to have sex once a month with a
sex worker. Van den Wittenboer is disabled and uses a wheelchair and — in a story
taken up by Dutch television and newspapers — reported needing less medication
and feeling less stress once the state-funded sex surrogacy was in place. Initially,
during his legal battle, van den Wittenboer said, “[the council] said sex wasn’t part
of the primary needs of a human being.” “Now,” he said in 2001, “there is a lady
coming once a month, and I feel much better.”21 Since then, the Dutch government
has more consistently codified these services, paying for hetero- and homosexual
sexual services for mentally and physically disabled citizens, and, according to
Selina Bonnie, “people with significant impairments” have been traveling to the
Netherlands “to access sex services, which have been established by the state specifically for disabled people.”22 Although the legal battle prior to 2001 already
suggests that the policy was not uncontroversial, it would seem that since then it
has both become somewhat less so and partly, for some in the Netherlands (and
elsewhere, in thought about the Netherlands), wrapped up in a national sense of
who “we” are: nonplussed about sex, attentive to the health needs of “our” citizens, different from countries that are neither of those, and so forth. Even with the
sexualized twist, this Dutch situation fits with one of Stone’s other arguments, that
national attempts to resolve questions of distributive justice around and through
disability get wrapped up almost immediately in national self-definition.23
At least two things are interesting to me as disability and sex come together
around the state. First, I am interested in how sexualized discourses of “openness”
might currently and paradoxically function normatively in the Netherlands (and
elsewhere), especially in the wake of Pim Fortuyn’s rise to prominence a decade
ago. Fortuyn was an openly gay politician running for parliament as a member of
the right-wing, anti-immigrant Leefbaar Nederland Party, when he was assassinated by an animal rights activist in 2002. What came to the fore during Fortuyn’s
campaign (and in some ways after the assassination as well) was how tolerance of
sexual diversity and minoritized gay identities could actually be deployed to facilitate xenophobia and Islamophobia. I am not by any means equating the stories of
Pim Fortuyn and Hennie van den Wittenboer; instead, I am making a point about
dangers that can potentially circulate around sexual identity or disability or sexual identity and disability: “yes that’s who we are as a people” or even “yes that’s
who we are sexually” and “look to the fairness with which we treat our minoritized
citizenry” can coexist with what Jasbir Puar has so effectively analyzed as the targeting of other populations for quarantine and death. Puar calls the “securitization
and valorization” of certain queer subjects in the contemporary moment “homonationalism” and contends that such securitization is intimately connected to how
other subjects (what she calls “terrorist corporealities”) are marked as excessive
and essentially targeted for death or elimination.24
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Partly thanks to Puar’s important study, we are starting to get used to making these points in queer studies but not so much, I would say, in disability studies,
even if Stone’s arguments authorized us to do so, at a time when a nascent queer
studies really was not. A crip theory of sexuality, then, would insist on thinking
seriously about van den Wittenboer’s rights and pleasures while being wary of
how those might get discursively positioned by and around the state. It would,
additionally, to use van den Wittenboer’s own words, want the sensation of “feeling
much better” (in all its resonances) to be autonomous from one’s citizen-status (van
den Wittenboer seems to have simply evoked the “needs of a human being” that,
in his deployment, did not seem to be a category particularly tied to citizen-status).
Van den Wittenboer did not necessarily position this as queer or crip theory on
the ground, but there is no reason not to.
Second, and this may be why we still have such trouble in disability studies with this kind of analysis around privileged identities, obviously the potential
use of disability and sex to shore up who “we” are can and will coexist with plenty
of “panic” (to invoke Rubin again), plenty of residual or even dominant discourses
that still position disability and desire at odds or, put differently, disability as
undesirable: debates in the Netherlands about physician-assisted suicide and, for
some, a certain common sense that of course severe disability is cause enough for
a state-sponsored exit, coexisted and coexist with the more emergent discourses I
have been tracing.25
So, to end by repeating one of the questions I identified at the beginning:
what if disability were sexy? Of course it already is: crip cultures are as hot and
sexy, fierce and happening as queer cultures at their best (and these cultures obviously overlap already and should overlap more). But a crip theory of sexuality is
simultaneously hip to how its sexiness might get used, or hip to how disability
has already been used in so many problematic ways by the modern state. The
sexy queer crip performer Greg Walloch can lead me to a conclusion here. In the
2001 performance video Fuck the Disabled, Walloch speaks of perusing bookstore
shelves and coming across a Louise Hay book that identifies cerebral palsy as
“brought to this earth to heal the family with one sweeping gesture of love.” After
a pause and deadpan look up at his audience, Walloch continues rapidly, “brought
to the earth with one sweeping gesture of love . . . you know, I don’t really want that
job!”26 A crip theory of sexuality, thinking and rethinking sex and seeking to feel
much better, would push for other sensations, other connections, but would always
be attuned to the impossible work that disability has been asked to perform — to
resolve questions of distributive justice (with one sweeping gesture of love?) while
masking the contradictions inherent in the system that generated those questions
of justice in the first place.
Notes
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
Gayle Rubin, “Thinking Sex: Notes for a Radical Theory of the Politics of Sexuality,”
in Pleasure and Danger: Exploring Female Sexuality, ed. Carole S. Vance (Boston:
Routledge and Kegan Paul, 1984), 267 – 319.
Anne Finger, “Forbidden Fruit,” New Internationalist no. 233 (1992): 9.
I am taking these two questions, as well as the notion of incongruity that I am considering in these opening paragraphs, from Anna Mollow’s and my introduction to the
anthology Sex and Disability (Durham, NC: Duke University Press, forthcoming).
Deborah A. Stone, The Disabled State (Philadelphia: Temple University Press,
1984).
Abby L. Wilkerson, “Normate Sex and Its Discontents: Intersex, Transgender, and
Sexually Based Disability,” in McRuer and Mollow, Sex and Disability.
Despite Wilkerson’s generative use of Rubin’s “charmed circle” and “outer limits,”
she is elsewhere critical of how Rubin’s theoretical move separates sexual hierarchies from other social hierarchies. See Abby L. Wilkerson, “Disability, Sex Radicalism, and Political Agency,” National Women’s Studies Association Journal 14 (2002):
33 – 57.
Alex Sendham, “Beginner’s Sex,” in Queer Crips: Disabled Gay Men and Their Stories,
ed. Bob Guter and John R. Killacky (New York: Harrington Park, 2004), 191 – 97.
Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York:
Simon and Schuster, 1963), 128.
Michel Foucault, Abnormal: Lectures at the Collège de France, 1974 – 1975, trans.
Graham Burchell (New York: Picador, 2003), 235.
“Now No One Is Safe from AIDS,” Life Magazine, July 1985.
Rubin, “Thinking Sex,” 299.
See Audre Lorde, The Cancer Journals (San Francisco: Aunt Lute, 1980); and Douglas Crimp, “How to Have Promiscuity in an Epidemic,” in AIDS: Cultural Analysis/
Cultural Activism, ed. Douglas Crimp (Cambridge, MA: MIT Press, 1987), 237 – 71.
Stone, Disabled State, 13.
Stone, Disabled State, 21, 90.
Lennard J. Davis, ed., The Disability Studies Reader (New York: Routledge, 1997).
Paul K. Longmore, Why I Burned My Book and Other Essays on Disability (Philadelphia: Temple University Press, 2003), 240.
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19. Licia Fiol-Matta, A Queer Mother for the Nation: The State and Gabriela Mistral
(Minneapolis: University of Minnesota Press, 2002); Lisa Duggan, The Twilight of
Equality? Neoliberalism, Cultural Politics, and the Attack on Democracy (Boston:
Beacon, 2003); Jasbir K. Puar, Terrorist Assemblages: Homonationalism in Queer
Times (Durham, NC: Duke University Press, 2007); Kevin P. Murphy, Jason Ruiz,
and David Serlin, eds., “Queer Futures: The Homonormativity Issue,” special issue,
Radical History Review (2008); Margot Canaday, The Straight State: Sexuality and
Citizenship in Twentieth- Century America (Princeton: Princeton University Press,
2009).
20. For a now-classic first-person account of his own experiences with sex surrogates in
San Francisco in the 1980s, see Mark O’Brien, “On Seeing a Sex Surrogate,” Sun,
May 1990, www.pacificnews.org/marko/sex-surrogate.html.
21. Keith Chalkley, “What a Pleasure,” Dispatchonline, November 10, 2001, www
.dispatch.co.za/2001/11/10/foreign/BWORLD.HTM. The story was reported in the
Dutch newspaper Brabants Dagbland and then circulated globally in English via
“breaking news” Internet sites, largely of two sorts: blogs, sites, and chat forums
focused on disability access issues and sensationalizing sites highlighting news of the
(supposedly) humorous or bizarre.
22. Selina Bonnie, “Disabled People, Disability, and Sexuality,” in Disabling Barriers,
Enabling Environments, 2nd ed., ed. John Swain et al. (London: Sage, 2004), 129.
In the Netherlands, these issues actually predate van den Wittenboer’s legal battle,
and an organization called Selective Human Relations has offered subsidized sexual assistance for twenty years. See Mutsuko Murakami, “The Right to Sex,” South
China Morning Post, September 11, 2004, 15; Helen McNutt, “Hidden Pleasures,”
Guardian, October 13, 2004, 2; Barbara Smit, “State to Pay for Sex Visits to Disabled
Man,” Irish Times, August 26, 1992, 7.
23. This national self-definition is a discursive formation that then travels beyond the
borders of the Netherlands. The cultural work of this discursive formation does not
necessarily translate into more sexual freedom on the ground, and, indeed, according to Gert Hekma, the widely accepted idea of Dutch sexual openness has actually
inhibited queer radicalism at the turn of the twenty-first century. See Gert Hekma,
“Queer: The Dutch Case,” GLQ 10 (2004): 276 – 80.
24. Puar, Terrorist Assemblages, 3. Puar herself discusses the Fortuyn story and considers
briefly some of the ways in which the Netherlands exemplifies the larger processes
she is theorizing (19 – 21).
25. In the United States in 2009, as I was completing this essay, it seems to me that the
processes I am sketching remain operative, even though I have chosen in the body
of my text to “think disability” (or sex and disability) via another state. The United
States remains a location where disabled people’s lives are overwhelmingly positioned
as undesirable and often, through the corporate (and extremely punitive) insurance-
based health care system, as dispensable. As health care debates raged in the United
States during 2009, however (largely over proposals that would clearly not benefit the
vast majority of people living with impairment or illness in the United States), certain
key disabled figures were brought forward discursively to shore up who Americans as
a people are or should be — most notably, Trig Palin, the son of former Alaska governor Sarah Palin, who was used in some of his mother’s speeches as a disabled American who would have to stand before “death panels” deciding whether he would live or
die if the insurance-based system were to be reformed. Others, sometimes speaking
for themselves and sometimes used as examples by family members, occupied similar
positions at so-called town hall meetings around the country. My argument is that this
particular biopolitical use of disability identity is relatively new and fundamentally
antidisabled.
26. Greg Walloch, Fuck the Disabled, dir. Eli Kabillio, New York: Mad Dog Films, 2001.
117
The Body Is Not An Apology
Sonya Renee Taylor
The body is not an apology.
Let it not be forget-me-not fixed to mattress when night threatens
to leave the room empty as the belly of a crow.
The body is not an apology. Present it not as disassembled rifle
when he has yet to prove himself more than common intruder.
The body is not an apology. Let it not be common as oil, ash, or
toilet.
Let it not be small as gravel, stain, or teeth.
Let it not be mountain when it is sand.
Let it not be ocean when it is grass.
Let it not be shaken, flattened, or razed
in contrition.
The body is not an apology. Do not give it as confession,
communion. Do not ask for it to be pardoned as criminal.
The body is not a crime; is not a gun.
The body is not a spill to be contained. It is not
a lost set of keys, a wrong number dialed. It is not
the orange burst of blood to shame white dresses.
The body is not an apology. It is not the unintended granules
of bone beneath wheel. The body is not kill.
It is not unkempt car.
It is not a forgotten appointment.
Do not speak it vulgar.
The body is not soiled. Is not filth to be forgiven.
The body is not an apology. It is not father’s back hand;
is not mother’s dinner late again wrecked jaw howl.
It is not the drunken sorcery of contorting steel round tree.
It is not calamity. The body is not a math test. The body is not a
wrong answer.
The body is not a failed class.
You are not failing.
The body is not a cavity; is not hole to be filled, to be yanked out.
It is not a broken thing to be mended, be tossed.
The body is not prison; is not sentence to be served.
It is not pavement; is not prayer.
The body is not an apology.
Do not give the body as gift. Only receive it as such.
The body is not to be prayed for; is to be prayed to.
So, for the evermore tortile tenth grade nose,
Hallelujah.
For the shower song throat that crackles like a grandfather’s
Victrola,
Hallelujah.
For the spine that never healed; for the lambent heart that didn’t
either,
Hallelujah.
For the sloping pulp of back, hip, belly,
Hosanna.
For the errant hairs that rove the face like a pack displaced of
wolves.
Hosanna,
for the parts we have endeavored to excise.
Blessed be
the cancer, the palsy, the womb that opens like a trap door.
Praise the body in its black jack magic, even in this.
For the razor wire mouth.
For the sweet god ribbon within it.
Praise.
For the mistake that never was.
Praise.
For the bend, twist, fall, and rise again,
fall and rise again. For the raising like an obstinate Christ.
For the salvation of a body that bends like a baptismal bowl.
For those who will worship at the lip of this sanctuary.
Praise the body for the body is not an apology.
The body is deity. The body is God. The body is God;
the only righteous love that will never need to repent.
You Get Proud by Practicing
by Laura Hershey
If you are not proud
For who you are, for what you say, for how you look;
If every time you stop
To think of yourself, you do not see yourself glowing
With golden light; do not, therefore, give up on yourself.
You can get proud.
You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.
There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
Or playing guitar,
And do well or not so well,
And be glad you tried
Either way.
You can show
Something you’ve made
To someone you respect
And be happy with it no matter
What they say.
You can say
What you think, though you know
Other people do not think the same way, and you can
keep saying it, even if they tell you
You are crazy.
You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.
Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practice opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.
It is sunlight
When you practice seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practice knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies.
All these practices bring power, and power
Makes you proud.
You get proud
By practicing.
Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.
-
-
-
-
.
•
Freaks and Queers
I : Naming
Handicap[Jtd. A disabled person sits on the street, begging for her
next meal. This is how we survived in Europe and the United
States as cities grew big and the economy moved from a land base
to an industrial base. We were beggars, caps in hand. This is how
some of us still survive. Seattle, 1989: a white man sits on the sidewalk. leaning against an iron fence. He smells of whiskey and
urine, his body wrapped in tom cloth. His legs are toothpick-thin,
knees bent inward. Beside him leans a set of crutches. A Styrofoam
cup, half full of coins, sits on the sidewalk in front of him. Puget
Sound stretches out behind him, water sparkling in the sun. Tourists bustle by. He strains his head up, trying to catch their eyes.
Cap in hand. Handicapped. 1
Disabled. The car stalled in the left lane of traffic is disabled.
Or alternatively, the broad stairs curving into a public building disable the man in a wheelchair. That word used as a noun (the disabled or people with disabilities), an adjective (disabled people), a
verb (the accident disabled her): in all its forms it means "unable,"
but where does our inability lie? Are our bodies like stalled cars?
Or does disability live in the social and physical environment, in
the stairs that have no accompanying ramp? I think about language. I often call nondisabled people able-bodied, or, when I'm
feeling confrontational, temporarily able-bodied. But if I call myself
disabled in order to describe how the ableist world treats me as a
person with cerebral palsy, then shouldn't I call nondisabled people enabled? That word locates the condition of being nondisabled,
67
ee
ELI
EXILE
CLARE
not in the nondisabled body, but in the world's reaction to that
body. This is not a semantic game.
Cripple. The woman who walks with a limp, the kid who uses
braces, the man with gnarly hands hear the word cripple every day
in a hostile nondisabled world. At the same time, we in the disability rights movement create crip culture, tell aip jokes, identify a
sensibility we call crip humor. Nancy Mairs writes:
I am a aipple. I choose this word to name me.... People--crippled or not- wince at the word aipple, as they do not at handicapf'td or disabled. Perhaps I want them to wince. I want them to
see me as a tough customer, one to whom the
have not been kind, but who can face the brutal truth of her existence squarely. As a aipple, I swagger.'
Gimp. Slang meaning "to limp." Gimp comes from the word
gammy, which hobos in the 18th century used among themselves
to describe dangerous or unwelcoming places. Hobo to hobo, passing on the road: "Don't go there. It's gammy." Insider language,
hobo solidarity. And now a few centuries later, one disabled person
greets another, "Hey, gimp. How ya <loin?" Insider language, gimp
solidarity.
Retard. I learned early that words can bruise a body. I have
been called retard too many times, that word sliding off the
tongues of doctors, classmates, neighbors, teachers, well-meaning
strangers on the street. In the years before my speech became understandable, I was universally assumed to be "mentally retarded."
W hen I started school, the teachers wanted me in the "special education" program. My parents insisted I be given yet another set of
diagnostic tests, including an IQ test, and I-being a white kid
who lived in a house full of books, ideas, and grammar-school English, being a disabled kid who had finally learned how to talkscored well. They let me join the "regular" first grade. I worked
overtime to prove those test results right Still I was retard, monk.ey,
defect on the playground, in the streets, those words hurled at my
body, accompanied by rocks and rubber erasers. Even at home, I
heard their echoes. My father told me more than once to stop
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walking like a monkey. My mother often talked about my birth defa:t. Words bruise a body more
than rocks and
Differently abled, physical{y challmged. Nondisabled people,
wanting to rushion us from the cruelty of language, invented these
euphemisms. In explaining her choice of the word cripple, Nancy
Mairs writes:
D!fferent!Y abled
... partakes of the same semantic hopefulness
that transformed COWltries from undePeloped to underdevtlaped,
then to las developol, and finally deveJqping nations. People have
continued to starve in those rountries during the shift. Some realities do not obey the dictates of language.'
Differently abled is simply easier to say, easier to think about than
disabled or handicapped or crippled.
Freak. I hold fast to my dictionary, but the definitions slip
and slide, tell half stories. I have to stop here. Freak forces me to
think about naming.
Handicapped. disabled, cripple, gimp, retard, d!ffermtly abled. I Wlderstand my ielationship to each of these words. I scoff at handicapped, a word I grew up believing my parents had invented
specifically to describe me, my parents who were deeply ashamed
of my cerebral palsy and desperately wanted to find a cure. I use
the word disabled as an adjective to name what this ableist world
does to us crips and gimps. Cripple makes me flinch; it too often
ac.oompanied the sticks and stones on my grade school playgroWld, but I love aip hwnor, the audacity of turning cripple into a
word of pride. Gimp sings a friendly song. full of irony and understanding. Retard on the other hand draws blood every time, a
sharp, sharp knife. In the world as it should be, maybe disabled
people would be differmtly abled: a world where Braille and audioand magazines were a matter of course,
recorded editions of
and hearing people signed ASL; a world where schools were fully
integrated, health care, free and unrationed; a world where universal ac.cess meant exactly that; a world where disabled people were
not locked up at home or in nursing homes, relegated to sheltered
employment and paid sweatshop wages. But, in the world as it is,
d!fferent!y abled,
cha1Jmgtd tell a wishful lie.
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Handicapped. disabled, cripple. gimp, retard, .differently abled, freak.
I need to stop here. Frmlc I don't understand It
me: I
don't quite like it, can't imagine using it as some poliuaz.ed disabled people do. Yet I want freak to be as easy as the words queer
and cripple.
Queer, like cripple, is an ironic and serious word I use to describe myself and others in my communities. Queer speaks
about who I am, my life as a dyke, my relationship to the domJnant culture. Because of when I came out-more than a decade after the Stonewall Re.b ellion-and where-into a highly politicized
urban dyke community-queer has always been easy for me. I
adore its defiant external edge, its comfortable internal truth. Queer
belongs to me. So does cripple for many of the
and cripple are cousins: words to shock, words to infuse with pnde
and self-love, words to resist intemaliz.ed hatred, words to help
forge a politics. They have been
by many
gay/lesbiarv'bVtrans people, cripple, or cnp, by many disabled people.
Frmlc is another story. Unlike queer and crip, it has not been
4
widely embraced in my communities. For me freak
scary edge; it takes queer and cripple one step too far; it doesn t feel
good or liberating.
.
.
.
.
This profusion of words and their vanous relauonships to
marginalized people and politiciz.ed communities fascinates me.
Which words get embraced, ·which don't, and why? Queer but not
pmJert. Cripple, and sometimes freak, but not retard.
of
the ugly and demeaning words used to batter and bait marginalized peoples-racist, sexist, classist, ableist, homophobic slurs-pervert and retard nearly burst with hurt and bitterness, anger and
reminders of self-hatred.s I doubt the
community and the
disability community respectively will ever claim those
as
our own. In contrast crip, queer, and freak have come to sit on a
cusp. For some of us, they carry too much grief. For others, they
can be chosen with glee and pride. Qu«r and crip are mine but not
freak, and I want to know why. What is it
What
bitterness, what pain, does it hold that cnppk, with its connotations of pitiful, broken bodies, and queer, with its sweeping defini-
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tions of normality and al:mormality, do not? I want to unravel
freak, to pull on the thread called history.
II : Freak Show
The history of freakdom ext.ends far back into western civilization.
The court jester, the pet dwarf, the exhibition of humans in Renaissance England, the myths of giants, minotaurs, and monsters all
point to this long history, which reached a pinnacle in the midl 800s to mid-l 900s. During that century, freaks were big entertainment and big business. Freak shows populated the United
St.ates, and people flocked to the circus, the carnival, the storefront dime museum. They came to gawk at freaks, savages, and
geeks. They came to be educated and entertained, titillated and repulsed. They came to have their ideas of normal and abnormal, superior and inferior, their sense of self, confirmed and strengthened.
And gawk they did. But who were they gawking at? This is where I
want to start.
What.ever these paying customers-rubes in circus lingo-believed, they were not staring at freaks of nature. Rather, the freak
show tells the story of an elaborate and calculated social construction that utilized performance and fabrication as well as deeply
held cultural beliefs. At the center of this construction is the showman, who, using costuming, staging, elaborate fictional histories,
marketing, and choreography, turned people from four groups into
freaks. First, disabled people, both white people and people of
color, became Armless Wonders, Frog Men, Giants, Midgets, Pinheads, Camel Girls, Wild Men of Borneo, and the like. Second,
nondisabled people of rolor-bought, persuaded, forced, and kidnapped to the United St.ates from colonized countries all over the
world-became Cannibals and Savages. Third, nondisabled people
of color from the United St.ates became Natives from the Exotic
Wilds. And fourth, nondisabled people with visible differencesbearded women, fat women, very thin men, people covered with
tattoos, intersexed people-became wondrous and horrifying ex-
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hi.bits. Cultural critic and disability theorist Rosemarie Garland
'Thomson argues that the differences among these sometimes over-
lapping
of people melded together.
Perhaps the freak. show's most remadcable effect was to eradicate
distinctions among a wide variety of bodies. ronfiating them W\der a single sign of the freak-as-other.... [A]ll the bodily characteristics that seemed different or threatening to the dominant
order merged into a kind of motley chorus line of physical difference on the freak show st.age.... [A] nondisabled person of color
billed as the "Fiji Cannibal'" was equivalent to
disabled. Euro-American called the
In the eyes of the rube, the freak show probably WdS one big melting pot of differentness and
At the same time, the differences among the various
of people who "M>rked as freaks
remain important to undemanding the freak show in its entirety.
But whatever the differences, all four
held one thing in
common: nature did not make them into freaks. The freak show
did. carefully ronstructing an exaggerated divide between "normal"
and Other, sustained in tum by rubes willing to pay good money
to stare.
Hiriam and Barney Davis performed wildly for their audiences, snapping, snarling, talking gibberish from stage. The handbill sold in ronjunction with their display described in lengthy,
imagined detail "What We Know About Waino and Plutano, the
Wild Men of Borneo... In reality Hiriam and Barney were white,
developmentally disabled brothers from an immigrant farm family
who lived in Ohio. Their mother, after many offers which she
fused, finally sold them to a persistent showman for a Wc1Sh pan
full of gold and silver. Off-stage Hiriam and Barney were quiet, unasswning men. In one photo they stand flanking their manager
Hanford Lyman. Their hair falls past their shouldeis; they sport
neatly trimmed goatees; Hiriam folds his hands in front of him;
Barney rocks his hands on his
they look mildly and directly
into the camera
Ann 1bompson, a white woman born without arms, posed as
"The Annless Wonder." From stage she signed and sold photograpm as souvenirs, writing with her toes sayings like, "So you per-
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ceive it's really true, when hands are lacking, toes will do," or more
piously, "Indolence and ease are the rust of the mind." In her autobiography, which she hawked along with her photos and trinkets,
Ann presented herself as a respectable, religious lady. In one photo,
she sits beside her husband and son, all of them -wearing formal
Victorian clothing.
William Johnson, a developmentally disabled Ahican-American man from New Jersey, became the "What Is It?" the "missing
link." the "Monkey Man." He wore hairy ape-like costumes,
shaved his head bald except for a little tuft at the very top, and
posed in front of a jungle backdrop. The showmen at P.T. Barnum's American Museum in New York City described William as
"a most singular animal, which though it has many of the features
and characteristics of both the human and the brute, is not, apparently, either, but in appearance, a mixture of both-the connecting
link between humanity and brute creation."7 Although the way in
which he came to the freak show is unknown-Barnum may have
bought him at a young age and coerced him into performing at
first-William died in his 80s at home, a well-liked and happy
man, referred to, by his oo-workers, as the "dean of freaks."
Charles Stratton, a working-class short person-dwaif in
medicaJ terminology-from Connecticut worked the freak show as
General Tom Thumb. He played the role of a European aristocrat,
complete with resplendent suits, a miniature carriage pulled by ponies, and meetings with rich and famous people around the world,
becoming in the process a rich man himself. When Charles and
Mercy Lavinia Warren Bump, a short woman who also worked the
freak show, fell in love and decided to get married, P.T. Barnum
set out, in an extravagant example of showmanship, to tum their
wedding into a huge media spectacle. He WdS successful; 2,000
people attended the event, and The New York Times ran a fullpage story, headlined "Loving Lilliputians." Charles and Mercy
played their roles and used the publicity to springboard another
European tour.
Two Congolese men and thirteen Congolese women, wearing
large, heavy jewehy in their pierced lips, were bought by circus
agent Ludwig Bergonnier and shipped from Ahica to the United
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States. The poster advertising their display in the Ringling Brothers Circus freak show proclaimed them "Genuine MonsterMouthed Ubangi Savages World's Most Weird Living Humans
from Africa's Darkest Depths." The women wore only gunny sack
skirts; the men, dressed in loincloths, carried spears. Ubangi was a
name randomly pulled off a map of Africa and had no relationship
to where these women and men had actually lived.
The Davis brothers, Thompson, Johnson, Stratton, the African men and women did not slide into the world as infant freaks.
They were made freaks, socially constructed for the purposes of
entertainment and profit. This construction depended not only
upon the showmanship of the "freaks" and their managers. It also
capitalized on the eagerness of rubes to gawk at freaks and on the
ableism and racism which made the transition from disabled person to freak, nondisabled person of color to freak. even possible.
Without this pair of oppressive ideologies, the attendant fear and
hatred of disabled people and people of color, and the desire to
create an Other against whom one could gauge her/his normality,
who could ever believe for even one farcical moment that William
Johnson was Darwin's missing link; Barney Davis, a wild man
from Borneo; Ann Thompson, an armless wonder?
Ann, in that plwto ofyou with your husband and son, you sit on a
rng decorated with crosses, a rug you crocheted. The slwwmen made a big
deal ofyour dexteriry. But did you learn to crochet as a freak slww stunt?
Or did you, like so ma'!)' women ofyour time, sew and knit, embroider and
crochet, simp!J' as a necessify and a pastime?
Although ableism and racism enter the picture here, the people who worked the freak show did not live as simple victims.
Many of the "freaks" themselves-particularly those who were not
developmentally disabled or brought to the United States from Africa, Asia, South and Central America, the Pacific islands, and the
Caribbean-controlled their own acts and displays, working alongside their managers to shape profitable shows. Many of them
made decent livings; some, like Charles Stratton and Mercy Lavinia Warren Bump, even became wealthy. When P.T. Barnum lost
all his money in a bad business deal, Stratton came out of semi-retirement and rescued him by agreeing to go on yet another lucra-
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tive European tour. Others, like the Hilton sisters, conjoined twins
who worked in the mid- l 900s, became their own managers, or,
like Bump and her Lilliputian Opera Company, formed their own
performing groups, which were employed by dime museums and
traveling vaudeville companies. In other words, white, nondisabled
freak show owners and managers didn't only exploit "their freaks."
The two groups also colluded together to dupe the audience, to
make a buck off the rube's gullibility. In the subculture of the
freak show, rubes became the exploited victims-explicitly lied to,
charged outrageous sums for mere trinkets, pickpocketed, or
merely given incorrect change at the ticket COllllter.
Charles, there is a picture ofyou, taken during a visit with the Queen
of England. You have a miniature sword drawn and are staging a fight
with a poodl.e. Your wife, Mercy, writes of embarrassment and outrage. Of
presidential candidate Stephen Douglas, she remembers: "He expressed
great pleasure at again seeing me, and as I stood before him he
took my hand and, drawing me toward him, stooped to kiss me. I
instinctively drew back. feeling my face suffused with blushes. It
seemed impossible to make people at first understand that I was
not a child." 8 Didyou share her embarrassment and outrage asyou faced
that poodle? Or didyou and Barnum laugh long and hard asyou concocted
your stunts?
The questions about exploitation are complicated; simple answers
collapse easily. Robert Bogdan in his history Freak Show excerpts a
letter he received from freak show manager Ward Hall: "I exhibited freaks and exploited them for years. Now you are going to exploit them. The difference between authors and the news media,
and the freak show operators is that we paid them." Bogdan comments, "[Hall's] use of the word exploit was playful. He does not
think he exploited them. He had a business relationship, complete
with contract. with his troupe of human oddities. His livelihood
depended on them, as theirs did on him. He had no pretensions of
doing good ...." 9 Although Bogdan chronicles the social construction of freaks in amazing detail and refuses to situate the people
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who worl<ed the freak shows as passive victims, I believe he is
reaching toward a simple answer to the question of exploitation.
Hall's exploitation of people who worked as freaks may not
have revolved around ableism and racism. Maybe he wasn't acting
out of fear and hatred of disabled pe0ple and people of color, out
of his internal psychological sense and the external legislated reality of privilege. And then again. maybe he was. But most certainly,
like all the people who profited from the freak show, he used
ableism and racism to his benefiL At best, this use of oppression by
a white, nondisabled businessman is problematic. In his letter, Hall
explicitly casts himself as a boss exploiting his workers, placing the
freak show within the conteXt of capitalism. Bogdan defends Hall
in a backhanded way when he writes: "[Hall) had no pretensions
of doing good." But since when do bosses in most profit-making
business have real pretensions of doing good by their workers? Doing good may be a byproduct of making profit, but only a byproduct. Is Hall any less exploitative because he was acting as a boss
rather than, or in addition to, a racist white person and an ableist
nondisabled person?
Any estimation of exploitation in the freak show needs to
also include Hall and "his troupe of human oddities" colluding together to exploit the rube. Sometimes this exploitation carried with
. it a sense of absurdity, a sense that the rubes would believe any·
thing, that they were simple, gullible fools. Other times this exploitation was pure thievery, the sideshow creating situations in which
it was easy to steal the rube's money. But to cast the audience only
as victim neglects the very real ways in which the freak show bolstered white people's and nondisabled people's sense of superiority
and well-being. The social construction of freaks always . relied
upon the perceived gap between a rube's normality and a freak's
abnormality. Unsurprisingly, normality was defined exclusively in
terms of whiteness and able-bodiedness.
The complexities of exploitation pile up, layer upon layer.
White people and nondisabled people used racism and ableism to
turn a profit. The freak show managers and owners were bosses
and as such had power over their workers, the people who worked
as freaks. Boss and worker together consciously manipulated their
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audience. 1bat same audience willingly used lies to strengthen its
own self-image. Given this maze of
I have trouble accepting the assesmlellt that exploitation in the freak show, if it existed at alL Wd.Sll't truly serious. Rather, I believe it exerted
:_a.·-.
UWlElllX U\ many UUO.:UUl\S.
Working as a freak never meant working in a respectful, liberating environment, but then disabled people had no truly respectful and liberating options available to them in the mid- l 800s.
They rould beg in the streets. They oould survive in almshouses,
where, as reformer Dorothea Dix put it, mentally ill people and
veloprnentally disabled people lived "in cages, closets, cellars, stalls,
pens! Chained. naked, beaten with rods, and lashed into obedience." 10 They could live behind dosed doors with their families.
C.Onsider William Jolmson. As a Black, developmentally disabled
man who apparently had no surviving family, he had few options.
P.T. Bamwn fotmd William's counterpart, the woman displayed
as the female "What ls It?," abandoned in an outhouse, rovered
with shit, left to die. In a world such as this, where the freak show
existed alongside the street, the almshouse, the outhouse, William's position as the "dean of freaks" doesn't look so bad
William. late after the ahibi!s had dosed. tire rubes grJN home, did
you andJ't1llT frimds
to f"UD1, passing a bottle of whiskey
round and round? Didyou entertain some more, pull outJ't1llTfoJd1e and
play silly
songs? Or did you sit bad and listen to one joke after
another untilyou wm brrathless with fmlglrter?
In many ways working as a freak was similar to working as a
prostitute. Cultural worker and working<.lass scholar Joanna Kadi
writes, "Left-wing working<.lass analysis ... situates prostitution
within the context of capitalism (one more real[y lousy job), celebrates the women who survive, thumbs its nose at the moralistic
middle-class attitudes that condemn without llllderst.anding, and
relays the women's stories and perspectives." 11 This same theoretical and political framework can be used to examine the job of
freak. Oearly, working as a freak meant working a lousy job, many
times the only job available, in a hostile ableist and racist world
Sometimes the job was lousier than others. 1be African women
and men who performed as "Ubangi savages"' made a nickel on
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every photDgraph they sold, nothing else; whereas their manager,
Ludwig Bergonnier, made $1,500 a week renting "his display" to
the Ringling Brothers Circus. 1n contrast, Charles Stratton became
rich, owning a horse farm and a yacht. Still others, like William
Johnson, found community among the people who worked the
freak show.
You who ended up in the history books named only "Ubangi Sav-
ages, " no names ofyour own: night after night, you paraded around the
tent, air sticl;y against your bare skin, burlap prickly against your
covered skin. Didyou come to hate &rgonni.er?
cirrus
What did the people who worked as freaks think of their
jobs, their lives? I want to hear their stories, but like the stories of
other marginaliz.ed people, they were most often never told, but
rather eat.en up, thrown away, lost in the daily grind of survival.
Some of the "freaks" didn't read or write, due to
particular
disabilities or to the materiaVsocial circumstances of their lives. Or,
as in the case of many of the people brought here from other countries, they didn't speak English and/or didn't come from cultures
that passed stories through the written word. A few "freaks" did
write autobiographies, but these pamphlets or books were mostly
part of the whole production, sold alongside the handbills and
photos. These stories ended up being part of the showmen's hyperbole. So, in order to reconstruct, celebrate, and understand the
lives of the people who worked the freak show, I rely on histDrians,
like Robert Bogdan, who have sifted through thousands of handbills, posters, newspaper articles, and promotional garbage used to
create The Armless Wonder, The Wild Men of Borneo. In large
part, I will never truly know their lives but can only use my imagi·
nation, political sensibilities, and intuition to fill the holes between
the outrageous headlines in The New York Times and other newspapers and the outrageous handbills sold at the carnival.
The histDrians who moralii.e about the freak show frustrate
me. These academics will take a detail, like the fact that Hiriam
and Barney Davis's mother sold her sons to a showman, and use it
to demonstrate just how despicable showmen could be and how
oppressive the freak show was. The disturbing fact that many of
the people who worked as freaks-disabled people from the
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United StateS as well as people from colonized countries-were
sold into the business needs to be examined. The question, why
were they sold, has to be asked. Certainly, in many cases, the answer must revolve around fear and hatred, undiluted ableism and
racism, imperialism and capitalism. But consider Hiriam and
Barney. They were sold for a wash pan full of gold and silver.
What did that wash pan mean to their mother, Catherine Davis?
My sources suggest, although don't explicitly state, that the Davises were a poor immigrant farm family. Did that gold and silver
mean economic survival to Catherine Davis? What happened to
working-class and poor disabled people who needed care but
whose families could not provide it? The options did not abound:
the almshouse, the street, the freak show. Rather than moralize
and condemn, I want freak show historians to examine the whole
context, including racism, ableism, and classism, and begin to build
a complex understanding of exploitation. Like prostitutes, the people who worked as freaks-especially those who had some control
over their own display-grasped an exploitative situation in an exploitative world and, as often as possible, turned it to their benefit.
At the same time, the people who had the least power in the
freak show-people from coloniz.ed countries and developmentally
disabled people-underscore just how exploitative this institution
could be. Many of the people of color brought to the U nited States
died bleak deaths of pneumonia, pleurisy, or tuberculosis. They
died on the long ship rides. They died wanting desperately to return to their home countries. They did not want to be part of the
freak show; they never came to like the freak show; they didn't become showmen and ·women in their own right. Instead, the circus,
the dime museum, the vaudeville act, the natural history museum
were sites of one more atrocity in a long line of imperialist atrocities. Likewise, developmentally disabled people most frequently
had no control over their displays. Some lacked the cognitive abilities to say yes or no to their own exhibition; others were simply
trapped by unscrupulous managers, who typically were also their
legal guardians. Although some developmentally disabled people
had what appear tD be good and happy relationships with their
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managers, the dual role of showman and legal guardian is a set-up
for exploitation.
The display of both groups of people capitaliz.ed on the theory of the time that nondisabled people of color and developmentally disabled people embodied the missing link between primates
and humans. Eminent zoologist Baron Georges Cuvier wrote in
the early 1800s:
The negro rare is confined to the south of Mount Atlas. Its characteristics are, black complexion, woolly hair, compressed craniwn, and flattish nose. In the prominence of the lower part of
the face, and the thickness of the lips, it manifestly approaches
the monkey tribe."
Much the same was believed about developmentally disabled people. Following the same train of thought as Cuvier, German scientist Ca.rJ Vogt wrote in 1867 even more explicitly about
evolutionary theory:
Microcephalics [people with a type of developmental disability
medically known as microcephalia] must necessarily represent
an earlier developmental state of the hwnan being ... ; they reveal to us one of the milestones which the hwnan passed by during the course of his historical evolution.
H
The racism and ableism imbedded in these theories intersect
jntensely in the exhibition of developmentally disabled people of
color. Consider the story of two developmentally disabled siblings
kidnapped as children from San Salvador. Called "Maxi.mo" and
"Bartola," they were declared to be from "a long-lost rare of Aztecs." Scientists and anthropologists studied them; showmen displayed them. Both groups helped create and defend the "long-lost
race" fabrication, anthropologists to substantiate their theories,
showmen to make money, each feeding off the other. 'They used a
variety of observations as their proof. They emphasized physical
attributes associated with being disabled by microcephalia, particularly short stature and a slightly sloping skull. They took note of
"Maximo's" and "Bartola's" dark skin and thick black hair. They
made much of their subjects' language use and food preferences,
citing the cultural differences between "civilized" white people and
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"barbaric" people of color. They exaggerated the specific cognitive
abilitieefmabilities of "Maximo" and "Bartola." In short, these
white, nondisabled men totally intertwined race and disability, racism and ableism, to create "their freaks."
In one set of photos, "Maximo" and "Bartola" are stripped
naked, posed against a blank wall I imagine scientists measuring
the diameter of their skulls, the length of their legs, taking notes
about their skin color and speech patterns, then snapping these
pictures to add to their documentation. A second set of photos has
them sitting against a stone wall. "Maximo" wears striped pants
and a shirt with a big sun on its front. "Bartola's" dress has a zigzag design woven through it. Their hair is teased into big, wild afros. "Maximo" looks dazedly beyond the camera; "Bartola" looks
down. I imagine showmen carefully arranging their props, calculating their profits. There are no complex or ambiguous answers here
to the questions of power, control, and exploitation.
During the freak show's heyday, today's dominant model of disability-the medical model-did not yet exist. This model defines
disability as a personal problem, curable and/or treatable by the
medical establishment. which in turn has led to the wholesale medicalization of disabled people. As theorist Michael Oliver puts it:
Doctors are centrally involved in the lives of disabled people
from the determination of whether a foetus is handicapped or
not through to the deaths of old people from a variety of disabling conditions. Some of these involvements are, of course, entirely
appropriate, as in the diagnosis of impairment. the stabilisation of
medical condition after trawna, the treatment of illness occurring independent of disability, and the provision of physical rehabilitation. But doctors are also involved in assessing driving
ability, prescribing wheelchairs, determining the allocation of financial benefits, selecting educational provision and measuring
work capabilities and potential; in none of these cases is it irrunediately obvious that medical training and qualifications make
doctors the most appropriate persons to be so involved."
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In the centuries before medicalization, before the 1930s and
'40s when disability became a pathology and the exclusive domain
of doctors and hospitals, the Christian western world had encoded
disability with many different meanings. Disabled people. had
sinned. We lacked moral strength. We were the spawn of the devil
or the product of god's will. Our bodies/minds reflected events that
happened during our mothers' pregnancies.
At the time of the freak show, disabled people were no longer
monsters in the minds of nondisabled people, but rather extraordinary creatures, not entirely human, about whom everyone-"professional" people and the general public alike-was curious.
Doctors routinely robbed the graves of "giants" in order to measure their skeletons and place them in museums. Scientists
scribed disabled people in terms like "female, belonging to the
monocephalic, ileadelphic class of monsters by fusion," 16 language
that came from the "science" of teratology, the centuries-old study
of monsters. Anthropologists studied disabled people with an eye
toward evolutionary theory. Rubes paid good money to gawk.
Hiriam, did you ever swp mid-peifonnance, swp up there on your
dime musewn platjonn and stare back, turningyour mild and direct gaze back
on the rubes, gawking at the gawkm, entertained f?y your own audience?
At the same time, there were signs of the move toward medicalization. Many people who worked as freaks were examirled by
·doctors. Often handbills included the testimony of a doctor who
verified the "authenticity" of the "freak" and sometimes explruned
the causes of his or her "freakishness." Tellingly doctors performed
this role, rat.her than anthropologists, priests, or philosophers. But
for the
in which the freak show flourished, disability was
not yet inextricably linked to pathology, and without pathology,
pity and tragedy did not shadow disability to the same extent they
do today.
Consequently, the freak show fed upon neither of these, relying instead on voyeurism. The "armless wonder" played the fiddle
on stage; the "giant" lived as royalty; the "savage" roared and
screamed. These performances didn't create freaks as pitiful or
tragic but as curious, odd, surprising, horrifying, wondrous. Freaks
were not supercrips. They did not ovm:ome disability; they .flaunted
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it. Nor were freaks poster children, the mod.em-day objects of pity,
used to raise money on the telethon stage. Instead, the freaks
flaunted, and the rubes gawked. In a culture that paired disability
and curiosity, voyeurism was morally acceptable. Thus, people
flocked without shame or compunction to see the freaks, primed
by cultural beliefs about disability to be duped by the lies and fabrications created at the freak show.
In the same way, cultural beliefs about race-notions about
the wild savage, the noble savage, and an eagerness to see bothmade the exhibition of nondisabled people of color at the freak
show and other venues extraordinarily profitable. Take for example
the display of Filipino people at the 1904 World's Fair in St.
Louis. The exhibit was billed as the "Igorot Village," complete with
mostly naked women and men dancing wildly and eating dog
stew. One among many "anthropological" displays at the Fair, the
Village, as a near perfect representation of the wild savage, attracted by far the most Fair-goers and media attention. Christopher Vaughan in his article "Ogling Igorots" writes:
The "civilized" Visayans, despite offering hourly theatrical and
orchestral performances-concluding with "The Star Spangled
Banner," SW1g in English by the entire village-went relatively
ignored in comparison with the lgorots .. .. Gate receipts at the
Igorot concession nearly quadrupled the total for the Visayans
and tripled that of the colorful Moros."
It was all too easy for white people to gawk at people of color, using the image of dog-eating savages from far-away "uncivilized" islands both to create and strengthen their sense of white identity
and white superiority.
During this same period of time, imperialism had intensified
to a fevered pitch, both abroad in places like the Philippines and at
home as white people continued to subjugate and destroy Native
peoples and cultures. By the time of the 1904 World's Fair, the
United States had won the Spanish-American War and gained
control over the Philippines. In explaining his decision to solidify
the United States' colonial rule there, President McKinley referred
to "our civilizing mission." What better way to justify that mission,
than to display Filipino people as uncivilized savages?
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This interplay between politics and the freak show also occurred on the national level. For instance, the missing-link evolutionary theory, used so profitably by showmen, supported slavery
before Emancipation and the suppression of civil rights after. But
the freak show didn't only use this ideology. The display of Black
and white developmentally disabled people and nondisabled people of color as the "missing link" and the "What Is It?" actually
bolstered the theory. The scientists and politicians could point to
William Johnson and say, "See, here is living proof. Look at this
creature." In doing so, they were reaffirming the less-than-human
status of people of color and rationalizing much of their social and
political policy. Simply put, the freak show both fed upon and
gave fuel to imperialism, domestic racist politics, and the cultural
beliefs about wild savages and white superiority.
The decline of the freak show in the early decades of the 20th century coincided with the medicalization of disability. As pity, tragedy, and medical diagnosis/treatment entered the picture, the
novelty and mystery of disability dissipated. Explicit
stopped being socially acceptable except when controlled by the
medical establishment. And later in the 20th century, as colonized
people of color fought back successfully against their colonizers
and as legal segregation in the United States ended and civil rights
started to take hold, the exhibition of people of color also became
unacceptable. Along with these changes came a scorn for the freak
show as an oppressive institution from the bad old days. But I'm
not so sure the freak show is all that dead.
Consider Coco Fusco and Guillermo Gomez-Pena's performance piece "The Couple in the Cage," created in 1992 as part of
18
the "500 Years of Resistance" celebration. Fusco and GomezPefia costumed themselves in everything from fake leopard skins
_!_O mirrored sunglasses and posed as natives from a newly discovered tribe. They toured natural history museums, art galleries, and
street comers in a cage, performing the script of exotic and noble
savages. In the long tradition of showmen and -women, they even
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invented an island in the Gulf of Mexico from which they supposedly came and, as they toured, didn't let on to their ruse. Fusco
and Gomez-Pena expected their audiences to immediately recognize the parody. Instead, as dorumented in a video shot at the
scene of several performances,19 many people apparently took the
ruse seriously. Some people expressed shock and disgust. Others,
particularly white people, expounded on their theories about why
Fusco paced back and forth, why Gomez-Pena grunted, staring out
at the audience. Still others paid 50 cents for Polaroid pictures of
the "savages" posed at their bars. Whether these people were serious, whether they all left the performance sites still duped, whether
they truly believed their own theories, is not dear. But at least to
some extent, it appears that "'The Couple in the Cage" easily replicated the relationship between rube and freak. suggesting that the
old images of race cultivated by the freak show, rather than being
dead, live astonishingly close to the surface.
The scorn for the freak show also assumes that the bad old
days were really awful, but I'm not so sure that they were in actuality all that bad for some of the "freaks." Llsten to the stories
Robert Waldow and Violet and Daisy Hilton tell. All of them lived
during the freak show's decline as medicalization took hold
Robert Waldow, a tall man born in the 1920s, resisted becoming a giant, a freak. He wanted to be a lawyer, but unable to
get the necessary education, he turned to shoe advertising. And
later, after being pursued for years by showmen, he worked for the
circus, earning a large salary and refusing to participate in the hype
which would have made him appear taller than he really was. At
the same time, doctors also pursued Robert, reporting him to be
the tallest man in the world-this being medical hype, not circus
hype. They refused to leave him alone. In 1936 a Dr. Charles
Humberd showed up uninvited at the Waldow's home. Robert re_fused a physical exam and wouldn't cooperate with the interview.
Humberd left disgruntled and the next year, unbeknownst to the
W aldows, published an article in the journal of the American Medical
Association called, "Giantism: A Case Study," in which Robert became a case study of a "preacromegalic giant." Because of the article, which cast him as a surly brute, Robert and his family were
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deluged with unwelcome attention from the media, the general
public, and the medical establishment. In the biography The Gentleman Giant, Waldow's father reveals that Roben was far more disturbed and angered by his dealings with doctors than with
showmen.
Conjoined twins Daisy and Violet Hihon echo this reaction.
These women worked the circus, carriival, and vaudeville circuits
from the time they could talk. Early on, their abusive guardians
controlled and managed the show. They v.iould lock Daisy and
Violet away for days at a time to ensure that no one but rubes paying good money could see them. Later, after a court order freed the
sisters, they performed on their own. The cover of one publicity
pamphlet has Daisy playing the saxophone, Violet, the piano, and
both of them smiling cheerfully at the viewer. Much of their lives
they spent fighting poverty as the freak show's popularity waned.
And yet in their autobiography, they write about "loath[ing] the
very tone of the medical man's voice" and fearing that their guardians would "stop showing us on stage and let the doctors have us20
to punch and pinch and take our picture always. " Try telling
Robert Waldow and the Hilton sisters how oppressive the freak
show was, how enlightened the medical model of disability is, how
bad the bad old days were. Try telling Coco Fusco and Guillermo
Gomez-Pena that the freak show is truly dead.
The end of the freak show meant the end of a particular kind of
employment for the people who had worked as freaks._For nondisabled people of color from the United States, employment by the
1930s didn't hinge heavily on the freak show, and so its decline
didn't have a huge impact. And for people from Africa, Asia, South
and Central America, the Pacific islands, and the Caribbean, the
decline meant only that white people had one less reason to come
kidnap and buy people away from their homes. But for disabled
people the end of the freak show almost guaranteed unemployment, disability often being codified into law as the inability to work.
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In the '30s when Franklin Roosevelt's work programs employed many people, the federal government explicitly deemed disabled people unable to work, stamping their work applications
"P.H. Physically handicapped. Substandard. Unemployable,'' sending them home with small monthly checks. The League of the
Physically Handicapped protested in Washington, D.C., ocrupying the Work Progress Administration's offices, chanting, "We
want jobs, not tin cups."21 ln this climate, as freak show jobs disappeared, many disabled people faced a world devoid of employment
opportunities.
Listen for instance to Otis Jordan, a disabled African-American man who works the Sutton Sideshow, one of the only remaining freak shows in the country, as "Otis the Frog Man." In 1984,
his exhibit was banned from the New York State Fair when someone lodged a complaint about the indignities of displaying disabled
people. Otis responded, "Hell, what does she [the woman who
made the complaint] want from me-to be on welfare?" 22 Working
as a freak may have been a lousy job, but nonetheless it was a job.
III: Pride
Now with this history in hand, can I explain why the word freak
unsettles me, why I have not embraced this piece of disability history, this story of disabled people who earned their livings by
flaunting their disabilities, this heritage of resistance, an in-yourface resistance similar to "We're here, we're queer, get used to it"?
Why doesn't the word freak connect me easily and directly to subversion? The answer I think lies in the transition from freak show
to doctor's office, from curiosity to pity, from entertainment to pathology. The end of the freak show didn't mean the end of our display or the end of voyeurism. W e simply traded one kind of
freak.dam for another.
Take for instance public stripping, the medical practice of
stripping disabled children to their underwear and examining them
in front of large groups of doctors, medical students, physical
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therapists, and rehabilitation specialists. They have the
back and forth They squeez.e her muscles. They watch his gait.
muscle tension, footfall, back CUIVature. They take notes and talk
among themselves about what surgeries and therapies they might
recommend Since the invention of video cameras, they tape the
sessions. They justify public stripping by saying it's a
for students, a way for a team of professionals to pool knowledge.
This isn't a medical practice of decades gone by. As recently as
1996, disability activist Lisa Blumberg reported in The .Disabili9'
R.ag that "specialty" clinics (cerebral palsy clinics, spina
ics, muscular dystrophy clinics, etc.) at a variety of teaching hospitals regularly schedule group-rather than private-eXaminations
24
and conduct surgery screenings in hospital amphitheaters. Excuse
me, but isn't public stripping exactly what scientists and
pologists did to "Maximo" and "Bartola" a cenwry ago? Tell me,
what is the difference between the freak show and public
ping? Which is more degrading? Which takes more control away
from disabled people? Which lets a large group of nondisabled
people gawk unabashedly for free?
Today's freakdom happens in hospitals and doctors' offices.
It happens during telethons as people fork CYVer money
of
the tragic stories milked until they're dry. It happens m
. homes where severely disabled people are oft.en forced to live
stops, on
against their wills. It happens on street comers and at
playgrounds and in restaurants. It happens when nondisabled people stare, uying to be covert, smacking their children to teach them
how to pretend not to stare. A character in the play
The
Hidden Histmy of People with Disabilities juxtaposes the voyeurism of
the freak show with the voyeurism of everyday life, saying:
We're always on display. You think if I walked down the street
of your stinking little nowhere town people wouldn t stare at
me? Damn right they would, and tell their neighbors and
and talk about me over dinners and picnics and PTA meetings.
Well, if they want to do that, they're going to
to pay me
for that privilege. You want to stare at me, fine, 1t s 25 cents,
cash on the barrel. You want a picture, that's another quarter.
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My life story. Pay me. You think I'm being exploited? You pay
to go to a baseball game, don't you?"
Today's freakdom happens all the time, and we're not even paid
for it. In fact disabled people have, as a group, an astounding unemployment rate of 71 percent.26 When we do "M>rk, we make 64
cents to a nondisabled workers' dollar.27
We don't control today's freakdom, unlike the earlier freak
show freakdom, which sometimes we did. The presentation of disability today has been shaped entirely by the medical est.al;
and the charity industry. That is, until the disability
nghts movement came along. This civil rights and liberation movement established Centers for Independent Living all over the country, working to redefine the concept of independence. These
centers offer support and advocacy, helping folks find ac.cessible
and.
attendants, funding for adaptive equipment
and )Ob training. Independent living advocates measure independence not by how many tasks one can do without assistance,
but by how much control a disabled person has over hWher life
and by the quality of that life.
.
The movement founded direct-action, rabble-rousing groups,
like AOAPT28 and Not Dead Yet, 29 that disrupt nursing home industry conventions, blockade non-ac.cessible public transportation,
oa:upy the offices of politicians committed to the status quo, and
protest .outside courtrooms. Disabled people have a history of dircct-act1on protest, beginning with the League of the Physically
Handicapped's WPA protest. In 1977, disabled people occupied
the HEW (Department of Health, Education, and Welfare) offices
in San Francisco for 25 days, successfully pressuring politicians
into signing Section 504 of the Rehabilitation Act, the first civil
rights legislation in the United States for disabled people.30 And
today, ADAPT is rabble-rousing hard, both on the streets and in
Congress, to pass a national personal attendant services bill.
1:1e
is creating a strong, politicized disability culture with a growing body of literature, performances, hwnor, theory: and political savvy. We have theater, poetry, anthologies,
ficuon, magazines, art exhibits, film festivals, analysis and oiticism
written by disabled folks, conferences, and a fledgling academic
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discipline called Disability Studies. At the same time, there are disabled people working to
into mainstream culture, working to become models photographed for the big-name fashion
magazines, actors in soap operas and sitcoms and Hollywood movies, recognized artists and writers and journalists.
The movement lobbied hard for laws to end separate and unequal education, for comprehensive civil rights
The
l 990 Americans with Disabilities Act (ADA) did not spnng from
George Bush's head, fully formed and shaped by his
understanding of disability issues. Rather lawyers schooled m disability rights and disabled White House appointees with a stake in
disability politics crafted the bill, disability lobbyists educated and
lobbied hard, and grassroots disability activists mobilized to get the
ADA passed. In short the disability rights movement, founded in
the same storm of social change as women's liberation and gay/lesbian liberation, riding on the energy and framework created by the
Black liberation movement, came along and is undoing internalized oppression, making community, creating a culture and sense
of identity, and organizing to change the status quo.
These forces are taking freakdom back. declaring that disabled people will be at the center of defining disability, defining
our lives, defining who we are and who we want to be. We are declaring that d0ctors and their pathology, rubes and their money,
anthropologists and their theories, gawkers and their so-called
nocuous intentions, bullies and their violence, showmen and their
hype, Jerry Lewis and his telethon, government bureaucrats and
their rules will no longer define us. To arrive as a self-<lefined people, disabled people, like other marginalized people, need a strong
sense of identity. We need to know our history, come to understand which pieces of that history we want to make our own, and
develop a self-image full of pride. The women and men who
worked the freak show, the freaks who knew how to flaunt their
disabilities-the tall man who wore a top hat to add a few inches
to his height, the fat woman who refused to diet, the bearded
woman who not only refused to shave, but grew her beard longer
and longer, the developmentally disabled person who said, "I know
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you think I look like an ape. Here let me accentuate that look"can certainly teach us a thing or two about identity and pride.
Pride is not an inessential thing. Without pride, disabled people are much more likely to accept unquestioningly the daily material
conditions of ableism: unemployment, poverty, segregated and
education, years spent locked up in nursing homes,
perpetrated by caregivers, lack of access. Without pride,
mdiVIdual and collective resistance to Qppression becomes nearly
But
pride is no easy thing to come by. Disability
has been soaked m shame, dressed in silence, rooted in isolation.
In 1969 in the backwoods of Oregon, I entered the "regular"
first grade after a long struggle with the school officials who wanted
me in "special education," a battle won only because I had scored
well on an IQ test, my father knew the principal, and the first
grade teacher, who lived upriver from us, liked my family and advocated for me. I became the first disabled kid to be mainstreamed
the
years later, the first laws requiring quality public
for disabled kids, the Education for AU Handicapped
Children Act and Section 504, were signed. By the mid- l 980s,
mainstreaming wasn't a rare occurrence, even in small, rural
schools, but in 1969 I was a first.
No one-neither my family nor my teachers-knew how to
acknowledge and meet my particuJar disability-related needs while
letting me live a rather ordinary, rough-and-tumble childhood.
They simply had no experience with a smart, gimpy six-year-old
who learned to read quickly but had a hard time with the physical
act of writing. who knew all the answers but whose speech was hard
to
In
to resolve this tension, everyone ignored
my disability and disability-related needs as much as possible. When
I
trouble handling a glass of water, tying my shoes, picking up
coms, screws, paper clips, writing my name on the blackboard, no
? ne asked if I
help. When I couldn't finish an assignment
m the allotted time, teachers insisted I tum it in unfinished . When
my classmates taunted me with rttard, monkey, defect, no one comforted me. I rapidly became the class outcast, and the adults left
me to fend for myself. I took as much distance as I could from the
kids in "special ed." I was determined not to be one of them. I
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wanted to be "normal," to pass as nondisabled, even though my
shaky hands and slurred speech were impossible to ignore.
Certainly I wasn't the only disabled person I knew. In Port
Orford, many of the men had work-related disabilities: missing
fingers. anns, and legs, broken backs, serious nerve damage. A
good friend of my parents had diabetes. A neighbor girl, seven or
eight years younger than me, had CP much like mine. My best
friend's brother had severe mental retardation. And yet I knew no
one with a disability, none of us willing to talk, each of us hiding as
best we could.
No single person underlines this ironic isolation better than
Mary Walls, who joined my class in the fourth grade. She wore
hearing aids in both ears and split her days between the "regular"
and the "special ed" classrooms. We shared a speech therapist. I
wish we had grown to be friends, but rather we became enemies,
Mary calling me names and me chasing her down. I understand
now that Mary lived by trying to read lips, and my lips. because of
the way CP affects my speech, are nearly impossible to read. She
probably taunted me out of frustration, and I chased her down, as
I did none of my other bullies, because I could. I understand now
about horizontal hostility: gay men and lesbians disliking bisexual
people, transsexUal women looking down on drag queens, workingclass people fighting with poor people. Marginalized people from
· many communities create their own internal tensions and hostilities, and disabled people are no exception. I didn't have a disabled
friend until I was in my mid-20s, and still today all my close
friends, the people I call "chosen family,'' are nondisabled. Often I
feel like an impostor as I write about disability. feel that I'm not
disabled enough, not grounded deeply enough in disability community, to put these words on paper. This is the legacy for me of
shame, silence, and isolation.
Pride works in direct opposition to internalized oppression.
The latter provides fertile ground for shame, denial, self-hatred,
and fear. The former encourages anger, strength, and joy. To transform self-hatred into pride is a fundamental act of resistance. In
many communities, language becomes one of the arenas for this
transformation. Sometimes the words of hatred and violence can
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be neutralized or even turned into the words of pride. To stare
down the bully calling cripple, the basher swinging the word queer
like a baseball bat. to say "Yeah, you're right. I'm queer, I'm a crip.
So what?" undercuts the power of those who want us dead.
Many social change movements have used language and
naming specifically to create pride and power. In African-American
communities, the progression from Coloml to Negro to Black both
followed and helped give rise to the pride and anger that fueled the
Civil Rights Movement. "Black is beautiful" became a powerful rallying cry for Black community and culture. But while the word
Black so clearly connects itself to pride, the use of the word nigger
among Black people causes much debate. For some, claiming that
word with affection and humor rejects a certain kind of pain and
humiliation, but for others, it simply reinforces those same feelings.
The ugly words-far,got. queer. nigger, retard. cripple. freak--OJme
highly charged with emotional and social history. Which of us can
use these words to name our pride? The answer is not logical.
Let me refute even the slightest suggestion that lesbian'
gay/bi/trans people who hate the 'M>rd queer, disabled people who
hate the words cripple and freak, Black people who hate the word
nigger are trapped by their internalized
That would be
far too simple and neat Instead I want to follow a messier course,
to examine the ways in which the ugly words we sometimes use to
name our pride tap into a complex knot of personal and collective
histories. I want to return to my original question: why does the
word freak unsettle me?
But even as I veer away from the simple and neat argument.
the one centered upon the ways oppression can tum around and
thrive in the bodies'minds of oppressed people, I must pull my
self-hatred out of the bag. Even though the answer to my question
about the word.freak is bigger than self-hatred, I need to stare down
the self who wants to be "normal," the kid who thought she could
and should pass as nondisabled, the crip still embarrassed by the
way hec body moves. I can feel slivers of shame, silence, and isolation still imbedded deep in my body. I hate these fragments. In the
last decade I've stretched into the joy of being a gimp among
gimps. learning anger and subversion, coming to recognize the
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grace in a gnarly hand, tremor, rolling limp. raspy breath, finding
comfort and camaraderie with disabled people. Yet I have not
stretched far enough to imagine flaunting my CP, even though
flaunting is a tool many disability activists use. They are in effect
saying to nondisabled people, "Damn right, you better look. Look
long and hard. Watch my crooked hobble, my twitching OOdy, my
withered legs. Listen to my hands sign a language you don't even
know. Notice my milky eyes I no longer hide behind sunglasses.
Look at me straight on, because for all your years of gawking,
you've still not seen me." Is flaunting the same as pride? I don't
know. But I do know that every time I hear disabled people call
themselves freaks, my decades-old self-hatred collides head-on with
my relatively new-found pride.
For me freak is defined by my personal experience of today's
freakdom. Today's freakdom happened to me at Fairview State
Hospital in l 965 when the doctors first declared me "retarded." I
didn't yet talk arid was given an IQ test that relied not on verbal
skills, but on fine motor coordination. And I-being a spastic little
kid with CP-failed the test miserably. I simply couldn't manipulate their blocks, draw their pictures, or put their puzzles together.
Today's freakdom happened every time I was taunted mard, monweirdo. It happens every time someone gawks, an occurrence
that happens so regularly I rarely even notice. I don't see
curious, puzzled, anxious-tum their heads to watch my trembling
hands, my jerky movements. I don't see people strain to understand me, then decide it's impossible. Long ago I learned to block
all those visual intrusions. I only know it happens because my
friends notice and tell me. Yet I know I store the gawking in my
bones. Today's freakdom happens every time some well-meaning
stranger or acquaintance suggests a certain combination of vitamins, crystals, or New Age visualization techniques that she knows
will cure my CP. I always want to retort, "Yeah right, like I'm lookinv for a cure. like mv brain cells that died some time before birth
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In addition.freak is shadowed for me by the complicated collective history of exploitation and subversion at the freak show. I
relish the knowledge that there have been people who have taken
advantage of white people's and nondisabled people's urge to
gawk. I love that disabled people at one time were paid to flaunt
and exaggerate their disabilities. At the same time I hate how the
freak show reinforced the damaging lies about disabled people and
nondisabled people of color. I despise the racism, ableism, capitalism, and imperialism that had showmen buying and kidnapping
people into the freak show. I rage at how few choices disabled people had.
To infuse the word freak with pride, I would need to step
through my personal history of freakdom into the larger collective
history of the freak show. Stepping through the last slivers of my
self-hatred, through the pain I've paired with gawking and the
word retard, I could use Charles Stratton's strut, Ann Thompson's
turning of the ordinary into the extraordinary, to strengthen my
own resistance. I could name myself a freak alongside Daisy Hilton, William Johnson, and Otis Jordan. I want it to work.
Instead the two histories collide in a madcap wheelchair race.
My personal history isn't so easy to step through; the slivers tear
my skin; the old familiar pain leaves me guarded and cautious.
And the collective history is hard to reduce to a pure story of resistance and subversion that I want to celebrate and use. I keep
thinking of the people who worked as "Ubangi Savages." Sure,
Charles Stratton and Violet Hilton became showmen and -women;
they took one set of exploitative conditions they were born into
and another set of exploitative conditions associated with their
work and subverted them as far as possible. But those African men
and women, they were casualties of imperialism; their resistance,
reflected in the sheer act of surviving the Ringling Brothers Circus,
is not a resistance to celebrate, but one to mourn.
This collision of histories leads me to think about the act of
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bear witness to rather than incorporate into our pride? How does
witness differ from pride? What do they share in common?
To unravel the relationship of the word feaJc to pride and witness,
let me step back for a moment, move to the word queer, to the
gay/lesbiarv'bVtrans community. I think it no accident that I've
paired the words queer and freak in this examination of language,
pride, and resistance. The ways in which queer people and disabled
people experience oppression follow, to a certain extent, parallel
paths. Queer identity has been pathologiz.ed and medica,lized. Until 1973, homosexuality was considered a psychiatric disorder. Tcr
day transsexuality and transgenderism, under the names of gender
dysphoria and gender identity disorder, are considered psychiatric
c.onditions. Queerness is all too frequently intertwined with shame,
silence, and isolation. Queer people, particularly VWb't youth, often
live rut off from other queer folk. alone in o ur schools, neighborhoods, and families of origin. Queer people deal with gawking all
the time: when we hold hands in public, defy gender boundaries
and norms, insist on recognition for our relationships and families.
lntersexed people, transsexuals, and people who don't c.onform to
gender norms-such as bearded women who grow their beards. have their own history at the freak show. Queer people have been
told for centuries by church, state, and science that our bodies are
abnormal. These parallel paths don't mean.that queer folk and disabled folk experience the same oppression; at many points the
paths diverge. For example the gawkers often pity crips and beat
up queers (although some crips do get beat up, and some queers,
pitied). But the places of similarity, the fact that both peoples have
been considered freaks of nature, push at the question of pride.
How have VWb't people created pride? What are the words and
the symbols of that pride?
Qµeer has accomplished a number of things for the VWb't individuals and communities who have embraced it. The word
names a reality. Yes, we are different; we are outsiders; we do not
fit the dominant culture's definition of normal. Queer celebrates
that differentness rather than hiding or denying it. By making queer
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97
our own, it bec.omes less a bludgeon. We take a weapon away from
the homophobes. Queer names a hugely diverse group of people. It
brings dykes, faggots, bi's, and trannies in all our variation and difference and overlap under one roof; it is a coalition-building word.
For some people the word works; for others it doesn't. The sa,me
things can be said of the word crip in relationship to the disability
community. All of this seems simple enough and is typically as far
as the thinking about naming goes.
But I want to push the thinking further. H ow do people who
have lived in shame and isolation create community and pride?
How do we even find each other? Let me turn here from the realm
of words to the realm of symbol. The pink triangle has been used
since the mid-'70s by VWb't people as a symbol to identify ourselves to each other and to the world. The Nazis originally used
this symbol during the Holocaust to mark non-Jewish gay men on
the streets and in the concentration camps just as the yellow star
was used to mark Jews. 31
The pink triangle functions now as a symbol of identity, witness, and pride in queer communities. As a sign of identity, it c.ommunicates both covertly and overtly. That pink triangle graphic
worn on a button or stuck on a bumper may not have much
meaning to many straight people-particularly those not connected to or aware of queer culture-but among Vglb-'t people, especially in urban centers, it readily signals queer identity to other
queer people. In this fashion, the pink triangle functions as an insider's language, a language attempting to include a marginalized
people while excluding the oppressor. It is also used more overtly
to speak of identity, sometimes inc.orporated into educational
work about the historical oppression of gay people, other times
into activist work. As a symbol of witness, it remembers and memorializ.es the gay men who died in the Holocaust. It keeps the
memory of Nazi atrocities alive in our c.onsciousness. It serves as a
reminder of the extremity of queer oppression. And as a symbol of
pride, the pink triangle neutralizes and transforms hatred, following the same political path as the words queer, cripple, nigger. It is
worn by out and proud queers. These functions-marking identity, expressing pride, insisting upon witness-go hand in hand, all
Q8
EL.I
EX IL E
CL.ARE
three important for any marginalized community. In our search for
liberation, we can sometimes tum the language and symbols most
closely reflecting our oppression into powerful expressions of pride.
And yet that equation sometimes betrays history, blurring the dif.
ference between witness and pride.
As a symbol of pride, the pink triangle has frequently been
divorced from its history. In one ahistorical explanation of this
symbol, the owner of a Minneapolis gay bookstore tells his customers that pink triangles represent white gay merv'lesbians and
black triangles-used by the Nazis to mark social deviants, including, it is assumed, lesbians, during the Holocaust-represent black
gay merv'lesbians. Divorced from its history, the pink triangle becomes a consumerist symbol, used to sell t-shirts and keychains; it
becomes a He. It is not and never will be the rainbow flag, which
Gilbert Baker designed in 1978 specifically as a queer symbol full
of unabashed pride and affirmation. To use the rainbow flag is to
connect oneself to queer identity and pride as they are currently
constructed. To use the pink triangle honestly is to connect oneself
to history.
I listen again to my Jewish dyke friends who don't understand the pink triangle as a symbol of pride. They ask me, "Why
reclaim this symbol that has meant genocide? My family would
never wear yellow stars joyfully as symbols of their pride, perhaps
in witness and rage, but never in pride. Why then the pink triangle? How can it possibly be a symbol of pride?" Behind their
words, I see the shadows of a collective history, the living reminders of numbers tattooed on forearms, the stories passed down of
family and culture destroyed.
Their questions and disbelief ask me to unwind the act of
witness from the expression of pride. Both witness and pride
strengthen identity, foster resistance, cultivate subversion. People
who have lived in shame and isolation need all the pride we can
m11.;:tPr nnt tn mirP 011r.-;pJvPs in :l narrowlv defined identitv POii-
AND
PRIDE
with a determination to be visible. Witness demands primary adherence to and respect for history. Pride uses history as one of its
many tools. Sometimes witness and pride work in concen, other
times not. We cannot afford to confuse, merge, blur the two.
And now I can come back to freak. The disabled people who use
the word freak, are they, like many queer people, betraying witness
in their creation of pride? A disabled person who names herself
pridefully a freak draws on the history of freakdom and the freak
show to strengthen her sense of resistance, to name a truth, to bolster her identity. But in using history this way, is she remembering
only Ann Thompson, Violet Hilton, and the developmentally
disabled girl who, while on display. took to swearing at the rubes?
What about "Maximo" and "Bartola"? What about the nondisabled people of color who died at the freak show, desolate for their
homelands? When we name ourselves freaks, are we forgetting
the part of history that calls for witness, not pride? Are we blurring
the two?
How does the history of the freak show interact with the history of today's freakdom? How do our personal histories enter our
collective history? If I had not intemaliz.ed nondisabled people's
gawking to the point that I no longer notice it, if instead I felt pissy
and uppity about it, would I be more able to imagine flaunting my
CP? Would I be more willing to take the resistance of the people
who worked as freaks as my own? Would I gladly use the word to
acknowledge a simple truth: that the world considers me a freak?
What about people disabled as adults, people who make it
relatively smoothly through the first rounds of denial, grief, and rehab and maybe find the disability rights movement and disability
community? They don't have a long personal history of freakdom.
Hopefully shame, silence, and isolation haven't been buried deeply
.i.. ..: ..
.... \A/k,,t minht th.-ir rPbtinn.:hin tn thP hi<:tnrv nf thP
100
EL I
CLA"lt
probably differ from mine. What about developmentally disabled
mean to them? Where is the pride in a
people? What
legacy of being owned by showmen who exhibited you as non-human? Again their relationships to freak show history are bound to
differ from mine.
I think of the disabled people I know who call themselves
freaks. Many of them are performers, helping to build disability
culture and/or working to break into mainstream culture. In using
the namefreak, they claim freak show history both as disabled people and as showmen and -women. They shape pride out of a centuries-old legacy of performing on the street corner, at the open-air
fair, in the palace and at the carnival as freak, monster, pet dwarf,
court jest.fi, clown. On the other hand, could a disabled person
whose personal history included public stripping but not performing as easily break through today's freakdom into that earlier freakdom? The history that for so long has placed us on stage, in front
of audiences, sometimes in subversion and resistance, other times
in loathing and shame, asks not only for pride, but also for witness
as our many different personal histories come tangling into our collective one.
This same profusion of histories exists in other communities.
For instance, even though I, along with an entire community of
dykes, faggots, bi's, and trannies, have made queer mine, the word
holds intolerable grief and bitterness for many gay men and lesbians, bisexual and trans people. The effeminate boy who came out
in the '50s. The dykes and queens caught in the pre-Stonewall police raids. The trans people with histories that include psychiatric
abuse. The folks who can pass as straight and/or normatively gendered and choose do so, who yearn toward true assimilation, an
end to differentness. I can't presume to know what relationships
each of these people have with the word queer. How do their personal histories come crashing into the current, collectively defined
calling out
use of qiuer? The ugly words follow no logic,
E XILE
AND
PRIDE
I 0
I
pieces of history, which kinds of humor, which words? Let me re·
tum once more to my question, "Why queer and cripple but not
freak?" This time I won't expect an answer. Instead. I want to take
the image of Barney and Hiriam Davis's mild and direct gaze into
the freak show camera and practice that stare when nondi.sabled
people and straight people gawk at inc. I want to place RDbert
Waldow's resistanre ;md Mercy Bump's outrage
my
lived knowledge that freakdom continues today. I want to remember that whether I call myselffreak or not, I share much with
Ann Thompson and William Johnson, Otis Jordan and Daisy Hilton. I want to refigure the world, insisting that anthropologists
never again construct lies like the ones they built around the bodies of "Maximo" and Bartola," that doctors never again publicly
strip disabled children. I want to sharpen my pride on what
strengthens me, my witness on what haunts me. Whatever we
name ourselves, however we end up shattering our self-hatred,
shame, silence, and isolation, the goal is the same; to end our daily
material oppression.
Essays and Speeches
by
Audre Lorde
Notice
This materia! may be
protected by copyright
law (Hie 17 U.S Code)
San Francisco State University
The Crossing Press / Freedom, CA 95019
The Crossing Press Feminist Series
Uses of the Erotic:
The Erotic as Power*
THERE ARE MANY kinds of power, used and unused, acknowledged or otherwise. The erotic is a resource within each of us
that lies in a deeply female and spiritual plane, firmly rooted in
the power of our unexpressed or unrecognized feeling. In order
to perpetuate itself, every oppression must corrupt or distort
those various sources of power within the culture of the oppressed that can provide energy for change. For women, this has
meant a suppression of the erotic as a considered source of
power and information within our lives.
We have been taught to suspect this resource, vilified, abused,
and devalued within western society. On the one hand, the
superficially erotic has been encouraged as a sign of female inferiority; on the other hand, women have been made to suffer
and to feel both contemptible and suspect by virtue of its existence.
It is a short step from there to the false belief that only by the
suppression of the erotic within our lives and consciousness can
women be truly strong. But that strength is illusory, for it is
fashioned within the context of male models of power.
As women, we have come to distrust that power which rises
from our deepest and nontational knowledge. We have been
warned against it all our lives by the male world, which values
• Paper delivered at the Fourth Berkshire Conference on the History of Women, Mount
Holyoke College. August 25, 1978. Published as a pamphlet by Out & Out Books
(available from The Crossing Press).
53
54
SISTER OUTSIDER
this depth of feeling enough to keep women around in order to
exercise it in the service of men, but which fears this same depth
too much to examine the possibilities of it within themselves. So
women are maintained at a distantlinferior position to be
psychically milked, much the same way ants maintain colonies
of aphids to provide a life-giving substance for their masters.
But the erotic offers a well of replenishing and provocative
force to the woman who does not fear its revelation, nor succumb to the belief that sensation is enough.
The erotic has often been misnamed by men and used against
women. It has been made into the confused, the trivial, the
psychotic, the plasticized sensation. For this reason, we have
often turned away from the exploration and consideration of
the erotic as a source of power and information, confusing it
with its opposite, the pornographic. But pornography is a direct
denial of the power of the erotic, for it represents the suppression of true feeling. Pornography emphasizes sensation without
feeling.
The erotic is a measure between the beginnings of our sense of
self and the chaos of our strongest feelings. It is an internal sense
of satisfaction to which, once we have experienced it, we know
we can aspire. For having experienced the fullness of this depth
of feeling and recognizing its power, in honor and self-respect we
can require no less of ourselves.
It is never easy to demand the most from ourselves, from our
lives, from our work. To encourage excellence is to go beyond
the encouraged mediocrity of our society is to encourage excellence. But giving in to the fear of feeling and working to
capacity is a luxury only the unintentional can afford, and the
unintentional are those who do not wish to guide their own
destinies.
This internal requirement toward excellence which we learn
from the erotic must not be misconstrued as demanding the impossible from ourselves nor from others. Such a demand incapacitates everyone in the process. For the erotic is not a question only of what we do; it is a question of how acutely and fully
we can feel in the doing. Once we know the extent to which we
are capable of feeling that sense of satisfaction and completion,
USES OF THE EROTIC
we can then observe which of our various life endeavors bring
us closest to that fullness.
The aim of each thing which we do is to make our lives and
the lives of our children richer and more possible. Within the
celebration of the erotic in all our endeavors, my work becomes
a conscious decision a longed-for bed which I enter gratefully
and from which I rise up empowered.
Of course, women so empowered are dangerous. So we are
taught to separate the erotic demand from most vital areas of
our lives other than sex. And the lack of concern for the erotic
root and satisfactions of our work is felt in our disaffection from
so much of what we do. For instance, how often do we truly
love our work even at its most difficult?
The principal horror of any system which defines the good in
terms of profit rather than in terms of human need, or which
defines human need to the exclusion of the psychic and emotional components of that need - the principal horror of such a
system is that it robs our work of its erotic value, its erotic power
and life appeal and fulfillment. Such a system reduces work to a
travesty of necessities, a duty by which we earn bread or oblivion for ourselves and those we love. But this is tantamount to
blinding a painter and then telling her to improve her work,
and to enjoy the act of painting. It is not only next to impossible, it is also profoundly cruel.
As women, we need to examine the ways in which our world
can be truly different. I am speaking here of the necessity for
reassessing the quality of all the aspects of our lives and of our
work, and of how we move toward and through them.
The very word erotic comes from the Greek word eros, the personification of love in all its aspects - born of Chaos, and personifying creative power and harmony. When I speak of the
erotic, then, I speak of it as an assertion of the lifeforce of
women; of that creative energy empowered, the knowledge and
use of which we are now reclaiming in our language, our
history, our dancing, our loving, our work, our lives.
There are frequent attempts to equate pornography and
eroticism, two diametrically opposed uses of the sexual. Because
56
SISTER OUTSIDER
of these attempts, it has become fashionable to separate the
spiritual (psychic and emotional) from the political, to see
as contradictory or antithetical. "What do you mean, a poetic
revolutionary, a meditating gunrunner?" In the same way, we
have attempted to separate the spiritual and the erotic, thereby
reducing the spiritual to a world of flattened affect, a world of
the ascetic who aspires to feel nothing. But nothing is farther
from the truth. For the ascetic position is one of the highest
fear, the gravest immobility. The severe abstinence of the ascetic
becomes the ruling obsession. And it is one not of self-discipline
but of self-abnegation.
The dichotomy between the spiritual and the political is also
false, resulting from an incomplete attention to our etotic
knowledge. For the bridge which connects them is formed by
the erotic - the sensual - those physical, emotional, and
psychic expressions of what is deepest and strongest and richest
within each of us, being shared: the passions of love, in its
deepest meanings.
Beyond the superficial, the considered phrase, "It feels right to
me," acknowledges the strength of the erotic into a true knowledge, for what that means is the first and most powerful guiding
light toward any understanding. And understanding is a handmaiden which can only wait upon, or clarify, that knowledge,
deeply born. The erotic is the nurturer or nursemaid of all our
deepest knowledge.
The erotic functions for me in several ways, and the first is in
providing the power which comes from sharing deeply any pursuit with another person. The sharing of joy, whether physical,
emotional, psychic, or intellectual, forms a bridge between the
sharers which can be the basis for understanding much of what
is not shared between them, and lessens the threat of their
difference.
Another important way in which the erotic connection functions is the open and fearless underlining of my capacity for joy.
In the way my body stretches to music and opens into response,
hearkening to its deepest rhythms, so every level upon which I
sense also opens to the erotically satisfying experience, whether
it is dancing, building a bookcase, writing a poem, examining an
idea.
That self-connection shared is a measure of the joy which I
know myself to be capable of feeling, a reminder of my capacity
for feeling. And that deep and irreplaceable knowledge of my
capacity for joy comes to demand from all of my life that it be
lived within the knowledge that such satisfaction is possible,
and does not have to be called marriage, nor god, nor an afterlife.
This is one reason why the erotic is so feared, and so often
relegated to the bedroom alone, when it is recognized at all. For
once we begin to feel deeply all the aspects of our lives, we begin
to demand from ourselves and from our life-pursuits that they
feel in accordance with that joy which we know ourselves to be
capable of. Our erotic knowledge empowers us, becomes a lens
through which we scrutinize all aspects of our existence, forcing
us to evaluate those aspects honestly in terms of their relative
meaning within our lives. And this is a grave responsibility, projected from within each of us, not to settle for the convenient,
the shoddy, the conventionally expected, nor the merely safe.
During World War II, we bought sealed plastic packets of
white, uncolored margarine, with a tiny, intense pellet of yellow
coloring perched like a topaz just inside the clear skin of the bag.
We would leave the margarine out for a while to soften, and
then we would pinch the little pellet to break it inside the bag,
releasing the rich yellowness into the soft pale mass of
margarine. Then taking it carefully between our fingers, we
would knead it gently back and forth, over and over, until the
color had spread throughout the whole pound bag of margarine, thoroughly coloring it.
I find the erotic such a kernel within myself. When released
from its intense and constrained pellet, it flows through and colors my life with a kind of energy that heightens and sensitizes
and strengthens all my experience.
We have been raised to fear the yes within ourselves, our deepest
cravings. But, once recognized, those which do not enhance Our
future lose their power and can be altered. The fear of our
desires keeps them suspect and indiscriminately powerful, for to
58
SISTER OUTSIDER
suppress any truth is to give it strength beyond endurance. The
fear that we cannot grow beyond whatever distortions we may
find within ourselves keeps us docile and loyal and obedient, externally defined, and leads us to accept many facets of our oppression as women.
When we live outside ourselves, and by that I mean on external directives only rather than from our internal knowledge and
needs, when we live away from those erotic guides from within
ourselves, then our lives are limited by external and alien forms,
and we conform to the needs of a structure that is not based on
human need, let alone an individual's. But when we begin to
live from within outward, in touch with the power of the erotic
within ourselves, and allowing that power to inform and illuminate our actions upon the world around us, then we begin
to be responsible to ourselves in the deepest sense. For as we
begin to recognize our deepest feelings, we begin to give up, of
necessity, being satisfied with suffering and self-negation, and
with the numbness which so often seems like their only alternative in our society. Our acts against oppression become integral with self, motivated and empowered from within.
In touch with the erotic, I become less willing to accept
powerlessness, or those other supplied states of being which are
not native to me, such as resignation, despair, self-effacement,
depression, self-denial.
And yes, there is a hierarchy. There is a difference between
painting a back fence and writing a poem, but only one of quantity. And there is, for me, no difference between writing a good
poem and moving into sunlight against the body of a woman I
love.
This brings me to the last consideration of the erotic. To
share the power of each other's feelings is different from using
another's feelings as we would use a kleenex. When we look the
other way from our experience, erotic or otherwise, we use
rather than share the feelings of those others who participate in
the experience with us. And use without consent of the used is
abuse.
In order to be utilized, our erotic feelings must be recognized.
The need for sharing deep feeling is a human need. But within
USES OF THE EROTIC
59
the european-american tradition, this need is satisfied by certain
proscribed erotic comings-together. These occasions are almost
always characterized by a simultaneous looking away, a
pretense of calling them something else, whether a religion, a fit,
mob violence, or even playing doctor. And this misnaming of
the need and the deed give rise to that distortion which results
in pornography and obscenity - the abuse of feeling.
When we look away from the importance of the erotic in the
development and sustenance of our power, or when we look
away from ourselves as we satisfy our erotic needs in concert
with others, we use each other as objects of satisfaction rather
than share our joy in the satisfying, rather than make connection with our similarities and our differences. To refuse to be
conscious of what we are feeling at any time, however comfortable that might seem, is to deny a large part of the experience,
and to allow ourselves to be reduced to the pornographic, the
abused, and the absurd.
The erotic cannot be felt secondhand. As a Black lesbian
feminist, I have a particular feeling, knowledge, and understanding for those sisters with whom I have danced hard,
played, or even fought. This deep participation has often been
the forerunner for joint concerted actions not possible before.
But this erotic charge is not easily shared by women who continue to operate under an exclusively european-american male
tradition. I know it was not available to me when I was trying to
adapt my consciousness to this mode of living and sensation.
Only now, I find more and more women-identified women
brave enough to risk sharing the erotic's electrical charge
without having to look away, and without distorting the enormously powerful and creative nature of that exchange.
Recognizing the power of the erotic within our lives can give us
the energy to pursue genuine change within our world, rather
than merely settling for a shift of characters in the same weary
drama.
For not only do we touch our most profoundly creative
source, but we do that which is female and self-affirming in the
face of a racist, patriarchal, and anti-erotic society.
selections from Kindling, by Aurora Levins Morales
http://www.auroralevinsmorales.com/excerpts-from-kindling.html
“As I do the work… bringing all my heart and intelligence and skill to the
task, I am bringing richness to the common soil we cultivate, pouring my
unique combination of nutrients into the ground of our future well-being…
I need my resources to flow from the rim of the future, from people who
are nourished by what I bring and want to nourish me back.”
Please visit http://www.auroralevinsmorales.com/the-village-it-takes.html
to become part of the village it takes to support Aurora’s life and work.
p. 9-10, Mountain Moving Day
“There is no neutral body from which our bodies deviate. Society has
written deep into each strand of tissue of every living person on earth.
What it writes into the heart muscles of five star generals is distinct from
what it writes in the pancreatic tissue and intestinal tracts of Black single
mothers in Detroit, of Mexicana migrants in Fresno, but no body stands
outside the consequences of injustice and inequality.....
What our bodies, my mother’s and yours and mine, require in order to
thrive, is what the world requires. If there is a map to get there, it can be
found in the atlas of our skin and bone and blood, in the tracks of
neurotransmitters and antibodies. We need nourishment, equilibrium,
water, connection, justice. When I write about cancer and exhaustion
and irritable bowels in the context of the treeless slopes of my homeland,
of market driven famine, of xenoestrogens and the possible extinction of
bees, I am tracing that map with my fingertips, walking into the heart of
the storm that shakes my body and occupies the world. As the rising
temperature of the planet births bigger and more violent hurricanes from
the tepid seas, I am watching the needle of my anger swing across its
arc, locating meridians, looking for the magnetic pulse points of change.
When I can hold the truth of my flesh as one protesting voice in a
multitude, a witness and opponent to what greed has wrought,
awareness becomes bearable, and I rejoice in the clarity that illness has
given me.”
p. 163, Drifting To Bottom
“I settle into the bed of passive sex like a leaf descending to the bottom of
a pond, all of me liquid, languid, slow, luminous, still. Once I was tigerish,
licking, biting, pouncing, growling, tumbling, arched, riding the springy
ribcages and hips of lovers I could climb on. Now I have sex as plants do,
petals agape for pollen; as snails do, one sticky wet part sliding softly,
infinitesimally across another. I have sex like a body of water, breath
making nipples rise like the crests of waves, creeks emptying into my
shimmering state of awareness through crevices, gullies, hillside torrents.
Rocking against the coast, tide by tide.
Now I am infinite earth, potent beyond all things and nearly motionless.
Sex is a bead of sweat, dew forming on the curve of a leaf, a thigh. Sex is
the quiver of grass on an almost windless day. I am a bed of clay on
which your fingers drum like rain, furrowed by your tongue, penetrated by
roots that grow strong because of me.
I am the sea anemone, exquisitely sensitive and anchored to rock. My
most delicate pink-tipped tentacles suck, clutch, cling to what touches
them. I change color, rose to maroon to violet, blush, glow, burn, circle
and dance in the water, wrap myself all around what comes within my
one inch reach, and never lift myself up from my stony bed. I am held
down by tired muscles, topped by my own fatigue, nerve endings tingling
with sensations, too exhausted to move, lickable, liquid, languid, sinking
into the slick, soft mud, coming down from above, drifting to bottom.”
p. 165-167, Listen, Speak
“1.
Come. You. Yes, you. Tonight we are gathering stories, ours, yours. Each of
us with our bundles of sticks, each of us with our strands of cord. The word
in your pocket is what we need. The song in your heart, the callous on
your heel.
Come into the clearing. Bring your tinder. Together, we will strike sparks
and set the night ablaze. Come out of the forest, the woodwork, the
shadows to this place of freedom, quilombo, swamp town, winter camp,
yucayeque, where those not meant to survive laugh and weep together,
share bread from mouth to mouth, pass cups of water, break bread--and let our living bodies speak.
Come with your triggers, your losses, your scars. When something you
hear, something you see, makes your wounds ache and throb, it’s only
memory rising, a piece of our history. Bring it into the circle. We will hold it
together.
…
2.
Open up. Make room. Let the circle grow.
From the shadows steps a man of Tuskeegee, syphilis raging untreated
through his veins, gone blind, lame and speechless while white doctors
took notes, but here he speaks with a voice like a drum. At the light’s
edge a girl with no face, who lived ten years locked in a room, holds the
hand of an old man with no relatives, and blue numbers tattooed on his
arm. Trace the lines in the maps of our bodies. They run like furrows, side by
side. They move like rivers, enter each other, make tributaries and forks.
Make room for the children raised on locked wards under a flickering
fluorescent light, the shocked and injected, the measured and displayed,
tormented, fondled, drugged, called defective. Their small blunt faces
look out from sterile hallways, grey buildings, medical case files, toward
the fire that we become. They come wheeling and hobbling over thick
tree roots, to sit by the flames, cry out in childish voices, for water, for
hands to hold, for us to listen as they give themselves new names.
We unwrap our tongues, we bind our stories, we choose to be naked, we
show our markings, we lick our fingers, we stroke our bellies, we laugh at
midnight, we change the ending, we begin, and begin again.”
Citations
Berne, Patty. “Sins Invalid: Disability, Dancing and Claiming Beauty,” in
Telling Stories to Change the World, edited by Rickie Solinger, Madeline
Fox, and Kayhan Irani. New York: Routledge, 2008.
Clare, Eli. “Freaks and Queers.” Exile And Pride: Disability, Queerness And
Liberation. Cambridge MA: South End Press, 1999. 81-118.
Hershey, Laura. “You Get Proud by Practicing.” Accessed January 28,
2014. http://www.cripcommentary.com/poetry.html#PROUD.
Johnson, Cyree Jarelle. “Disease Is Not A Metaphor.” Accessed February
10, 2014. http://www.blackgirldangerous.org/2013/07/2013729disease-isnot-a-metaphor/.
Levins Morales, Aurora. Kindling. Cambridge MA: Palabrera Press, 2013.
Lorde, Audre. “Uses Of the Erotic: The Erotic as Power.” Sister Outsider.
Freedom CA: The Crossing Press, 1984.
McRuer, Robert. “Disabling Sex: Notes for a Crip Theory of Sexuality,” GLQ:
A Journal of Lesbian and Gay Studies, 17.1 (2010): 107-117, p. 114.
Taylor, Sonya Renee. “The Body is Not an Apology.” Accessed January 28,
2014. http://www.sonya-renee.com/#!watch.
Withers, AJ. “Looking Back but Moving Forward: The Radical Disability
Model,” in Disability Politics & Theory. Halifax and Winnipeg: Fernwood
Publishing, 2012.

- New Day Films

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