(Re)fusing the Amputated Body: An Interactionist Bridge for

Hypatia, Inc.
(Re)fusing the Amputated Body: An Interactionist Bridge for Feminism and Disability
Author(s): Alexa Schriempf
Source: Hypatia, Vol. 16, No. 4, Feminism and Disability, Part 1 (Autumn, 2001), pp. 53-79
Published by: Blackwell Publishing on behalf of Hypatia, Inc.
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(Re)fusingthe AmputatedBody:
An Interactionist
Bridge
forFeminismand Disability
ALEXA SCHRIEMPF
Disabledwomen'sissues,experiences,andembodiments
havebeenmisunderstood,
if
not largelyignored,byfeministas wellas mainstreamdisabilitytheorists.The reason
for this,I argue,is embeddedin theuse of materialistand constructivist
approaches
to bodiesthat do not recognizethe interactionbetween"sex"and "gender"and
and "disability"
asmaterial-semiotic.
Untilan interactionist
"impairment"
paradigm
is takenup, we willnot be able to uncoverfully theintersectionbetweensexistand
ableistbiases(amongothers)thatformdisabledwomen'soppressions.
Relyingon the
is
one
that
such
material-semiotic
understanding sexuality
phenomenon,I examine
the operationof interwovenbiasesin two disabledwomen'snarratives.
One woman with spina bifidadescribeda preadolescent
encounterwith her gynecologist this way:
"Will I be able to have satisfyingsexual relationswith a man?"
"Don'tworry,honey, yourvagina will be tight enough to
satisfyany man."
Michelle Fine and Adrienne Asch (1988, 21)
Why should feminists care about disability theory? Because feminists have
missed the fact that disabled women's issues are different from able-bodied
women'sissues.MichelleFineandAdrienneAsch (1988)point out that disabled
women in general do not deal with the same oppressionsthat non-disabled
women do primarilybecause disabledwomen are not seen as women in this
Hypatia vol. 16, no. 4 (Fall 2001) © by Alexa Schriempf
54
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society.Forexample,"womenwith disabilitieshave not been 'trapped'by many
of the social expectationsfeministshave challenged.They have not been forced
to get marriedor to subordinatepaid work or childbearingor housekeeping"
(Fine and Asch 1988, 26). By failing to pay attention to disability theory,
feministswhose theory presumesto include disabledwomen underthe general
rubricof "woman"fail to recognizethe differentexperiencesof disabledwomen
in a sexist and ableistsociety.Disabledwomen are,of course,women. But given
that the feminist critique is not just about "entrapment"but also about the
oppressiveattitudes that normalizethat entrapment,feminism needs to turn
to disability theory in order to deconstruct the normalizationsthat oppress
disabledwomenas disabledwomen.However,as disabledfeministshave pointed
out, disabilitytheory has not developedadequateresourcesto explain the lives
of disabledwomen either.The reasonsfor this slippagebetween disabilityand
feministtheories,I believe,has to do with the use of overwhelminglymaterialist
approachesto explain gender and disability identities. In this introduction,I
providean overviewof the two primaryexamplesI will be using to illustratemy
points. The second section uncovers the difficultiesin using present feminist
and disabilitytheory frameworksto account adequatelyfor the problemsposed
by these examples.The thirdsection is a descriptionof an alternativeframework
that providesus with a way to think and act responsiblyin dealing with these
and other similarscenarios.
In the epigraph,the exampleof the young womanwith spina bifidapresents
us (feminists and disability theorists) with a disruptivemoment. There is a
complex set of assumptionsand disruptionsoccurring here that is not fully
explainedeither by feminist theory or disabilitytheory.It wouldseem that this
young woman'sexperienceoughtto be framedsimultaneouslyby two biases-a
sexist bias and an ableist bias. Let me explain. The young woman'squestion
is promptedby a fear that her disability will cause her to be unable to have
satisfyingsexual relationsat all because a) no one will see her as a fully adult
(and thereforea sexual)womanand b) her impairmentwill makesex difficultor
unpleasurable.This fearundoubtedlyoriginatesin society'sgeneralassumption
that disabledpeople are unable to have sex. At firstglance, it seems that the
doctor does not seem to participatein this view, but ratherin the view that a
woman'srole in sex is to providesatisfactionto the male partner.This second
view clearlyoffendsfeminist sensibilities.Additionally,those of us in disability
studies and in the disability rights movement also take offense at what we
have learnedto label, albeit somewhatvaguely,as an ableistattitude. But if we
examine the doctor'sposition carefully,this doctor-patientscenario does not
merita critiqueof ableismbecausedespitethe sexist bias, the doctorapparently
never assumesor suggeststhat the young woman'sdisabilitycould play a role,
negative or positive, in shaping her sexual life. Thus, we are left with only a
partialexplanation of this woman'soppression.
Alexa Schriempf
55
I am suggesting that we experience cognitive dissonance when we hear
or read of examples like this one. The moment of disruptionstems from our
inability to identify what is wrong with this picture in a language that is not
limited by the frameworkand logic of a particulartheory.What is wrongwith
this picture is not just that the doctor is sexist or that he is ableist;what is
wronghere is that this woman has to ask this questionat all. How manyof the
able-bodiedfeminist readersof this paper,because of their embodiment,have
askedtheirdoctorsif they wouldbe ableto have satisfyingsexualrelations?This
question promptsthe recognition that there is indeed some kind of ableism
occurringhere. At the same time, there is an uncomfortablerecognition that
feminists have not providedthe means for their disabledsistersto participate
in feminist solidarity.
Another equally controversialexample seems to be readily addressedby
feminismand disabilitytheory.However,were we attuned to the subtleundercurrentof dissonance that drivesus to repeat,What is wrong here?we would
recognize that neither disabilitytheory nor feminism,as they presentlystand,
can answerthis question. The June 1987 issue of Playboycarriesa seven-page
spreadof Ellen Stohl, who became a paraplegicaftera car accident.The article,
"Meet Ellen Stohl," is introducedby the editors,who explain their decisions
to photographStohl and run the piece. They firstreceived a letter from Ellen
Stohl in 1985 requestingthat they consider her for modeling. She presented
her case like this: after being injured in a car accident, she "realizedthat a
wheelchair should not make a difference"to her modeling and acting career,
and she re-doubledher effortsto pursuewhat she loved "not only for [herself]
but also to teach society that being disabled does not make a difference"
(Playboy1987,68). The editorsreportthe debatesthat circulatedin the office
on whether to run the piece. Most felt that this was a great way to celebrate
someone'slove of life, that her "truegrit"forcedthem to "reassess[their]view
of the handicappedas 'victims."'The dissenting opinion was more concerned
with being chargedwith "questionabletaste"(68) than with challengingsocial
expectations of sexuality. We are then taken through a description of her
life as a student, her experiencesin the hospital after the crash and her speaking engagements in classes about her life and sexuality as a disabledperson.
Underlyingthe interview is the belief that her disabilityhas not changed her
life. She informsher listenersthat having a disabilitydoes not diminish the sex
lives of disabledpeople. Interspersedbetween the soft porn shots are pictures
of her on horseback(without her wheelchair),with her friends at a fraternity
(in her chair) and in a martial arts class (in her chair). The porn images are
no differentfrom Playboy'susual run of soft porn shots. One shows her in a
revealing wedding dress, looking directly at the camera;another has her in
bed, her backsideand legs artfullydisplayedin the bed sheets; two have her
upperbody playfullyhidden/exposedwhile she reclines in bed.
56
Hypatia
Stohl also offers some interesting comments about her life as a disabled,
sexually active woman. I want to offer a few briefhighlights here.
Especiallysince my accident, I've felt that sexuality is the very
essence of who we are ... and if somebodyor something takes
awayyoursexuality,you don'tknow who you areor whereyou fit
in.... [After the crash]I was a child again, and people treated
me as such, not as a woman.... I was really lucky in that two
orderliesin the hospital harassedme relentlessly-tried to pull
my sheets off and stuff. They treated me like a woman ...
It's funny-if I sit in my wheelchair,a lot of guys don't want
to approachme, because they don't know how. But if I'm on
a barstool, I'll be ripped off and asked to dance. And I'm not
doing anything different;I'm just sitting in a different chair.
... I supposethere'll be those women'slibberswho say,"Idon't
want to be seen as just a sex object."No, of course you don't
want to be seen as just that. But would you want that taken
awayfromyou?What does that makeyou?I think everywoman
wants to be a sex symbolof some sort.When you take that away
from us, we'renot whole. (68-74)
How are we (feminists and disabilitytheorists) to understandthis? Let us
begin with the presentationof her body. In the porn shots, her disability is
renderedinvisible. Her wheelchair,her primarymeans of mobility, is absent.
She does not pose standing, but always sitting or lying down; there are no
visible indications of her paraplegia.Yet, they include photographsof her in
her everydaylife, doing things that are not typically perceivedas things that
disabledpeople can participatein. A distinction is being madebetween her life
as a sexual being and her life "on the streets";in one, she has a clearlydepicted
sexuality,in the other; she has a clearlyvisible disability.The two aspects of
her self are neatly divided.The editorsoffer the everydaylife picturesas proof
of her disability,rather than present her sexuality in conjunction with her
disability.Indeed, her disabilitydoes not matterbecause, in these pictures, it
is divorcedfrom her sexuality.
However,we shouldnot naively accept Stohl's claim that her disabilitydoes
not make a differenceat all. Forexample,she explains that differentpositions
are sometimes needed during sex and that it takes some experimenting to
figure this out. What she clearly means is that her disability does not make
a difference in who she is, in her ability to have sexual relations, and that
society shouldnot see her as less of a womanforhaving a disability.Her sudden
demotion to a child-like status (as a result of acquiring a visible disability)
meant that she was no longer viewed as a sexuallyviable and maturewoman.
Thus, she welcomed the sexual harassmentfrom the hospital orderlies,since
Alexa Schriempf
57
this behavior affirmedher sexuality and her adulthood.The feminist critique
that she is being treatedlike a sexual object does not serve her well-it is this
very objectificationthat makes her whole again. Paradoxically,this woman's
liberation rests in her sexual objectification.This about-faceis not easy for
feminists to handle. Nor is it easy for the disabilityrights movement to find
any victory in the (in)visible mainstreamingof a disabled figurewithin the
pages of Playboy.
It takes the powerof two critiquesto uncover the hidden assumptionsand
oppressionsoperatingin Stohl's story;but even applyingtwo critiquesdoes not
revealthe issuemost at stakehere: the fact that Stohl findsherselfin a position
where she must not only fight to be the author of her own sexuality but also
must establish a sexuality in the firstplace. What is wrong here is that Stohl,
in this society, has no sexuality at all as a disabledwoman. How many of us
able-bodiedwomen must establishthe presenceof a sexualitybeforewe go on
to authorit as we see fit?And how many of us are in the position of having to
prove it and assertit every day?
In this paper,I want to examine the sourceof the dissonancewe intuitively
sense when viewing scenarioslike these two; in doing so I arguethat neither
feminism nor disability theory can adequatelyaccount for our experience of
dissonance becauseneither one can explain the simultaneousand interwoven
oppressionsthat women with disabilities face. We are thus faced with the
challenge of adoptinga new paradigm,one that requiresand enables a mutual
dialoguing between feminism and disability theory in order to disentangle
the complex interweavingsof misrepresentations,invisibility,and the multiple
oppressionsof being female and disabled.
BROKENBRIDGES:
WHEREDISABILITYAND FEMINISTTHEORYFAILTO MEET
When the disability rights movement began thirty years ago, in both the
United States and Britain, there was a need for a principle(s) of disability
that definedand explaineddisabilityexperiencefromthe perspectivesof those
who were disabled and that provided the foundations for an active struggle
and movement.1Broadlyconstrued, disability theory and politics argue that
disabilityis conceptualizedas "deviance"froman able-bodiednorm;and for as
long as this norm undergirdssocial expectations and understandingsof what
constitutes "ability,"disabledpeople will be excludedand oppressed.
The firstmodel used to understandand define disabilitywas the biological
or medical model. It is predicatedupon the belief that disabilityis a disorderor
a diseasethat needs to be minimized,if not completelycorrected,with medical
intervention.This model views disabilityas something to be cured,because it
never makesexplicit that "disability"is maintainedby social standardsof how
58
Hypatia
a "good"body looks, acts, behaves, and performs-that is, a body that has the
"right"numberof smoothly functional limbs and organs and does not drool,
spasm,jerk, wheeze, wheel, limp, stutter,piss, or fart uncontrollablyeither in
privateor public realms.But as disabilityscholars2have arguedfor quite some
time, the agents in this normalizingprocessare membersof a ratherelite and
powerfulclass that has at its disposalthe means to produceand control images
of the "good"body.The medical model makeslittle or no distinction between
impairment and disability; the two are used interchangeablyto indicate a
disorder,malfunction,disfigurement,or dysfunctionof the body or brain.
Under the medical model, the power to define and regulate impairment,
disability,or any of the termsused above lies outsidethe disabilitycommunity,
outside the disabled individual'scontrol and self-determination.How one's
"impairment"is understood,interpreted,and incorporatedinto one's identity
and experience is in largepart determinedby medical authoritiesand institutions. Typically(particularlyin the past), this kind of authorityhas a tendency
to influence, if not dictate, the nature and degree of "disability"3and the
range of participationin and contribution to society. Disability is viewed as
something to be overcome;if it cannot be adequatelyminimizedor eliminated
accordingto medical and aesthetic standards,the disabledindividualis either
recommendedfor or actually institutionalizedor otherwise kept at home, out
of the public eye.4 It should be fairly obvious that this model, whatever its
good intentions to eliminate disability,is in fact oppressiveof disabledpeople's
bodies, spirits,and minds. Perhapsless obvious is how and where impairment
and disability are located in this model: in the individual, biological, and
amputatedbody. I pun seriouslyon the term "amputated"to refer to both
the impairedbody as well as the body which is removed (cut-off) from richly
interwoven social, cultural, psychological, physical, and biological environments.
When one views the disabledbody as deviatingfromthe healthyanatomical
norm,she is dislocating(or amputating)the bodyfromthose social and cultural
contexts that play a central role in shaping how disability and impairment
occur.Put simply,the medicalmodel sees impairmentand disabilityas residing
in the individual,anatomicalbody and not at all connected to social or cultural
environments. Thus, according to this model, a paraplegicis understood to
be someone who is paralyzedfrom approximatelythe waist down, who may
or may not have bladderand rectal control or sexual function, and who most
likely cannot walk unaided. The impairmentsand disabilities listed in this
description reside in the individual'sanatomical description. They do not
emergeas a resultof a sociallyand culturallysituatedbody.On this model, there
is a directcorrelationbetween impairmentand disabilitysuch that impairment
is not distinct from disability.That is, because her mobility is impaired,she is
disabled.In this logic, the disabilityemergesin the simpleanatomicalfact that
Alexa Schriempf
59
her legs are paralyzed.This makeslittle sense if we shift the locus of disability
(but not impairment)from the "amputated"individualto the socially situated
individual. Doing so reveals that while there may indeed be an impairment
of the limbs, there is no disabilityuntil the individual'swheelchair-enhanced
body is impededby the lack of access.
This is the fundamentalpremiseof the second model of disabilityadvocated
disability
politics: the social model.5Under this model, disabilityis located
by
in society and not in the individual'simpairment.To continue the wheelchair
example above, a paraplegic'sdisabling condition exists not as a one-to-one
correspondencebetween the impairmentand the restrictionof activity,but as
a resultof a society'sfailureto have universalaccess for wheelchairusers,such
as curbcuts, ramps,elevators,and powerdoors,integratedin the environment.
According to social model arguments,disabilityis not an individual,biological
condition;it is a social condition. In fact, as MichaelOliverexplains:"disability
is wholly and exclusivelysocial.... disability[has]nothing to do with the body.
It is a consequence of social oppression"(Oliver 1996, 35).
We see the impact this kind of thinking has for disabledpeople: "Itwasn't
my body that was responsiblefor all my difficulties.It was external factors,
barriersconstructedby the society in which I live. I was being dis-abled-my
capabilitiesand opportunitieswerebeing restricted-by prejudice,discrimination, inaccessible environments and inadequate support. Even more importantly, if all the problemshad been created by society, then surely society
could un-createthem" (Crow 1996, 206).6Another way of understandingthe
import of the social model is to characterizeit in terms of feminism:without
feminism, patriarchyremains unidentifiedas oppressive.Similarly,the social
modelframeworkprovidesthe necessarystructuresand standpointsfromwhich
to identify and locate the medical model of disability as a system of values
(ableism)that oppressdisabledpeople.
However,disabledfeminist scholarshave arguedthat despite its liberatory
effects, the social model falls short in addressingdisabledwomen'sissues.For
example, the doctor-patientscenario does not pose any problemsof access or
ableist discriminationthat the social model would be concerned about. That
is, the patient presumablyhad physical access to the doctor's building and
office; clearly,she was granted an appointmentand not denied medical care;
the doctor'sattitude, howevernauseatingit is, does not disablethe woman in
any concrete way by imposingphysical,economic, social, or political barriers.
Yet,as we know fromour moment of cognitive dissonance,there is surelysome
kind of ableist bias occurringhere. Some disabledfeminists might arguethat
the ableism lies in the doctor'slack of attention to impairmentissues-that
is, those issues that arise as a result of having spina bifida. In general, most
disabledfeministsarguethat becausethe social model ignoresimpairmentand
its bodily problems,scenarios precisely like this one will continue to exist.
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Unless impairmentis recognizedand assessedas a partof disabledpeople'sdaily
existence, the argumentgoes, disabledpeople will continue to face discriminatory attitudessuch as the belief that the body, impairmentsnotwithstanding,
should be ignored or discounted as unimportant.The social model, in focusing on the social construction of disability, has amputated disabled (especially women's)bodies from their impairmentsand their biological and social
needs.
Disabledfeministshave consequentlyturnedto feminist theory to aid them
in developing an analysisof disabledwomen'sexperiences. However,like the
social model, feminismdoes not really include disabledwomen'slives. As Fine
and Asch (1988) suggest in their work on women with disabilities,there is a
seriousneed foran examinationof disabledwomen'sexperiences.It is crucialto
note that Fine and Asch arguethat applyingthe feminist critiqueof patriarchy
to disabled women'sexperiences will not offer an adequateaccount of their
oppressions:
women with disabilities have not been "trapped"by many of
the social expectations feminists have challenged. They have
not been forced to get marriedor to subordinatepaid work or
childbearingor housekeeping.Instead,they have been warned
byparentsthat men only "takeadvantage";they have been sterilizedbyforceorby "choice,"rejectedbydisabledand non-disabled
heterosexualand lesbian partners,abandonedby spouses after
onset of disabilityand thwartedwhen they seek to mother.(Fine
and Asch 1988, 29)
At present,the feministcritiquecannot addressdisabledwomen'sneeds, experiences, or oppressionsbecause disabled women are not recognized as women
in this society. Because disabledwomen are seen as being helpless, childlike,
or defenseless, they are denied the "choices"that trap able-bodied (white)
women. Yet, paradoxically,they are viewed as "womanenough"to be sexually
objectified, as we can see from the patient-doctorscenario and from Ellen
Stohl's story. If feminism cannot speak about disabledwomen'sexperiences,
how are we to begin this projectof examining disabledwomen'sissues?
There is a parallelbetween feminismand disabilitytheory that drivesefforts
to develop a theory about disabledwomen. This parallel is identifiedby Fine
and Asch in their descriptionof the biologicalfoundationalism7undergirding
both feminist and disabilitypolitics:
althoughboth movementshave borrowedand profitedfromthe
black civil rights movement, these later movements share the
indisputablefact that in some situationsbiologydoesand should
count. However,feminismand disabilityrightsadvocatesinsist
Alexa Schriempf
61
that instances where biology matters are extremely rare, and
such cases can be minimized by changing society to better
incorporateall citizens. (Fine and Asch 1988, 26)
In other words,many feminists and disabilitytheorists have held the position
that there are some biological elements that are "by nature"and do matter,
such as distinguishingbetween the "sexes"and between the "disabled"and the
"non-disabled."
The claim is that such "biologicalfacts"should not determine
a person'srights,identity,experiences,qualityof life, etc. They operateinstead
as a skeleton of "facts"that are then interpretedby society to mean certain
things. It is this kind of"coatrack"thinking (or materialism)that shapesmost
of the work that drawsupon both feminist and disabilityresourcesto explain
disabledwomen'soppression.
In the current literature,there are two main approachesto describingthe
intersection of gender and disability,both of which drawupon the parallelof
biological foundationalism.One is characterizedby advocating for a "return
to impairment"in the social model of disability,a phrasecoined by LizCrow.8
The other is markedby the use of "additiveanalyses"to combine feminist and
disabilityidentity analyses.I examine both approachesbrieflyin orderto show
that unless we move awayfrom materialistframeworks,parallelnotwithstanding, and towardsan interactionistparadigm,feminismand disabilitytheorywill
continue to slippast one anotheras they attemptto describethe intersectionof
genderand disability.At the crux of my argumentis the claim that biological
foundationalistor materialistthinking results in the dichotomizationof sex
and genderon the one hand and impairmentand disabilityon the other. My
position is that this dichotomizationis not only an inaccuraterepresentationof
genderand disabilityidentities,but that it also impedesthe successfulbridging
of feminism and disabilitytheory.
LizCrow (1996) arguesfromwithin the parametersof disabilitypolitics that
the social model's emphasis on the social construction of disability has led
to the devaluationof the biological foundationof impairment,thus ignoring
one half of the impairment/disabilitydichotomy.She recommendsa "renewed
social model"that reinstates"real,"impaired(and women's)bodies to disability
politics becauseimpairmentissuesarenot readilyor realisticallyignored(Crow
1996, 206, 208-9). She implicitly argues that focusing on impairmentand
impairedbodies is a feminist issue. By extension, amending the social model
in this way will serve to merge feminism and disability theory by restoring
both halves of the dichotomy in disabilitypolitics. Jenny Morris,editor of the
anthology wherein Liz Crow'swork appears,points out that "the prominence
of men within the disabledpeople'smovement,and their generalreluctanceto
talk about feelings, has made it difficultto move beyond this rathersimplistic
version of the social model" (Morris 1996, 14). In other words,by relegating
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impairment(the biological)to the realmof the private,the disabilitymovement
ignoresthe experiencesof the real,lived body.Against this simplifiedversionof
the social model, Crowand Morrisarguethat becausethe personalis political,
there is a need for returningto the body and for examining the privateas well
as publicrealms.Conceivably,"bringingback impairment"or "returningto the
body"becauseof the feminist principle,"thepersonalis political,"is a feminist
insight.However,in examiningCrow'skey argumentbelow,it becomesdifficult
to see how her "renewed"social model will offera way to promotean exchange
between feminism and disability,which is key to any attempt to "feminize"
a framework.
The perception of impairmentas personal tragedyis merelya
social construction;it is not an inevitablewayof thinking about
impairment. Recognizing the importance of impairment for
us does not mean that we have to take on the non-disabled
world'sways of interpretingour experience of our bodies. In
fact, impairment,at its most basic level, is a purely objective
concept which carriesno intrinsicmeaning.Impairmentsimply
means that aspects of a person'sbody do not function or they
function with difficulty.Frequentlythis is taken a stage further
to imply that the person'sbody, and ultimately,the person, is
inferior.However,the firstis fact;the second is interpretation.If
these interpretationsaresociallycreatedthen they arenot fixed
or inevitable and it is possibleto replacethem with alternative
interpretationsbased on our own experience of impairment
rather than what impairmentsmean to non-disabledpeople.
(Crow 1996, 211)
Her position here is a biologicalfoundationalistone becauseshe arguesthat
society should recognize that impairment,at "its most basic level" (that is,
pre-social),has no inherent negative or positive meaning. She arguesthat if
disabilitypolitics examines impairmentissues and can develop a stance that
includesimpairmentin all its forms,then disabilityactivistscan bettereducate
ableist society to view impairmentas a markerfor physicaldifferenceand not
as an indication of a tragedy,or an inability to be fully functional. However,
there is a problem in separating"impairmentas fact" from "impairmentas
interpreted"in that this attempted separation does not fulfill her goal of
presentingan approachthat is any differentfrom the traditionalsocial model
approachto disability.The parallelruns something like this: "it'snot the disabilityitselfthat causesproblems,it'swhat societydoes when it sees a disability."
This is the claim of the social model,which is akin to Crow's"add-impairment"
formula:"it'snot the impairmentthat is a problem-it's how society interprets
an impairment."Crow wants to make very clear that impairmentand dis-
Alexa Schriempf
63
ability are two separatebut connected things. That is, there is a biological
foundationalismoperatinghere:without impairment,therecan be no disability.
Impairmentdoes not cause disability, "but . . . it is a precondition"for it
(Crow 1996, 220). Impairment,to use Nicholson's metaphor again, operates
as a coatrackupon which disability is heaped. Sadly, we do not advance the
social model by re-introducingimpairment.
Crowrecognizesthat talking aboutimpairmentruns the riskof readmitting
the medical model through the back door9but arguesthat it is a worthwhile
and necessaryrisk. However,the risk lies not in society'sinability to view disabilitypositively,but in trying to change the termsof the social model without
changing its thinking. To talk about impairment,to acknowledgeits negative
and its advantageousexperiences, to make it visible, means acknowledging
morethan its roleas a buildingblock in the socialconstructionof disability.This
is where the radicalpotential of Crow'sworkis revealed.Bringingimpairment
back to disabilitypolitics is risky,yes, but only if we retain the social model.
If we cling to the bio-social split inherent in its biologically foundationalist
thinking, then any talk about impairmentwill in fact re-admitthe medical
model through the back door. The social model'sbiological foundationalism
does not allow for the possibilityof dealing with impairmentin any other way
except as those rare "instances [in which] biology matters"(Fine and Asch
1988, 26).
Although there is a radical potential in Crow'smove toward a renewed
model that reinstates impairmentto an equivalent if not foregroundingrole
with disability,it cannot accomplishthe full inclusionof peoplewith disabilities
any more than the social model can. MairianCorkermight suggestthat this
attempt to restorethe ignoredpart of the impairment/disabilitybinary has a
"distinctlyDerrideanfeel" (Corker 1999b, 639) as it seeks to employJacques
Derrida's"double affirmative"(Shildrick and Price 1998, 245); however, as
Corker argues, it falls short of fully employing Derrida'snotion of differance,
which would restructuresociety such that people with differencesare not just
includedbut are alreadypresentin the social structure.
BecauseCrow'srenewedmodeldoes not examine and challengethe implications inherent in the term "impairment"as "biologicallyfactual,"it does not
succeed in addressingthe complex relationsof biology and social construction
within the concepts of impairmentand disability.The position here is that
impairmentis a biological given, a "meaningless"fact upon which disability,
the social construction, is built. This is no differentfrom the premisesof the
traditional social model. Further,adding impairmentto disability may be a
feminist move to undo the model's inherent sexism in that it upholds the
feminist slogan of politicizing the personal and the private, but it does not
necessarilyoffer a way for feminismand disabilityto be bridged,other than to
providea resonance with feminism'sdichotomizationof sex and gender.
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I admireCrow'seffortsto correctthe social model'ssexism.However,remembering the patient-doctorscenario, let us consider whether the restorationof
impairmentissues to the social model would help this woman. If impairment
as a strictly biological phenomenon were fully recognized side by side with
disability as a social construction, would this woman still have to ask the
question of whether she would be able to have satisfying sexual relations?
Unfortunately,the answeris yes. The social and political fallout of including
impairmentissues in disabilitypolitics may produceawarenessabout disabled
people'ssex lives so that doctorscan furnishappropriateinformation.But I can
think of at least two reasons why increasedpublic and/or medical knowledge
about the particularsof disabled people'ssexual practices does not eradicate
the need for this woman to ask her question. One, how does focusing on
impairmententail a change in the doctor'ssexist attitude?Let'ssupposehe does
focus on impairment-what guarantee is there that he will understandthe
woman'squestion to be aboutherselfand not her heterosexualpartner'sneeds?
Even if he focuses on impairment,he still can arrive at the same conclusion
about her ability to provide satisfyingintercourse.There is nothing inherent
aboutfocusingon impairmentthat directsone to think aboutthe right impairment! Two, regardingableist assumptionsabout sexuality,how does bringing
back impairmentchallenge the notion that disabled people don't have sex
lives in the first place?At best, focusing on impairmentmay raise and make
public issuesof how to have sex, what kinds of positions workand don't work,
what actions are best for producingsensual-sexualsensations,and where such
sensationsmay be produced.But this again does not do more than to provide
a kind of disability sex education; we are still left with the question of how
to get this informationout not just to disabledpeople but to the public as a
whole-for example,mainstreamingdisabilitysexualityin publicschool sex ed
programs(which, given its currentlack of attention to able-bodiedsexuality,
I'm not altogetheroptimistic will addressdisabledpeople'ssexuality anytime
soon).
In the doctor-patientscenario, a recognition of impairmentissuesdoes not
revealthe normsthat encode the doctor'ssexist and ableistbiases.The doctor's
replyis sexist and ableistbecause he upholdsa heterosex model of intercourse
that is dominated by an ends-orientedimage of heterosexualcopulation. He
misunderstandsthe woman'squestionnot justbecausehe is sexist and/orableist
but becausehis ideaof sexual activity is shapedby the heterosexmodel'snotion
of erogenouszones-basically, as long as the woman'svagina is accessible,then
there are no questionsto be raisedabouther abilityto providesatisfyingsexual
relations. The heterosexual model of sex is based on not just heterosexual
presumptionsbut also on ableist ones. The ableism lies in thinking that the
heterosexualerogenouszones of genitalia and breastsare the only or the most
significanterotic zones,when in fact, there are multipleand varianterotic sites
Alexa Schriempf
65
in the body. For as long as heterosexist norms, with their ableist and sexist
fallouts, are in operation, no amount of politicizing impairment issues will
undermine these norms unless we change our paradigms,because the social
model is only about challengingpublicnotions of access and disabilitystrictly
as social constructions.There is, in short,no roomfor impairmentin the social
model except as a meaninglessbiologicalfoundation.
If a returnto impairmentdoes not succeed,mightcombiningthe frameworks
of feminismanddisabilitytheoryproducea viabletheory?Some feminists'°have
attempted to merge disability theory and feminism by arguing that disabled
womenmustdealwith the twin but separateoppressions(a "doublehandicap"')
of being femalein a sexist society and being disabledin an ableistsociety.Once
each oppressionhas been mappedout, one can then "add"the two togetherto
arriveat an explanationof disabledwomen'soppression.To put it crudely,one
might say something like: "disabledwomen face a dual oppression,one on the
level of disability,the other on the level of gender.Both identities are social
constructionsheaped upon two biologicalfacts-one of impairment,the other
of sex. The two identities are alike, also, in that neither impairmentnor sex
in and of itself is problematicor difficult-that is, each becomes a problem
only when placed in a social context that is designed to be unwelcoming to
its biological characteristics.So, if we want to understanddisabled women's
experiences,we need to look at how it is that sex and impairmentareinterpreted
as negative and how they combine to formdisabledwomen'sdual oppression."
I agreewith Jenny Morriswhen she rightlyproteststhis way of thinking, stating that she feels "burdenedby disadvantage"(Morris 1996, 2). Additionally,
feminists familiarwith MariaLugones'sand ElizabethSpelman's(1995) work
will recognizethat this kind of thinking is markedby an "additive"or a "popbead"frameworkin which one theorizesseparateoppressionsand identitiesand
then adds them back together as if that would explain the whole experience.
An additivemodel often requiresassumingthat gender,disability,impairment,
and sex are separateentities-ones distinguishedby biological and cultural
binaries. Because it presupposesa bio/cultural binary, this model theorizes
about disabled women only by adding the two "biological foundations"of
sex and impairmenttogether to conclude that disabledwomen are oppressed
along the twin axes of genderand disability.Although this approachrests on
biological foundationalism,it is distinct from "returnto impairment"efforts
in that it presupposesbut then ignores the biological foundationsof sex and
of impairment.
Let me returnto the Ellen Stohl storyfora moment:I wish to point out that
there is a contradictionbetween her picturesand her narrative.Her narrative
and the editors' letter present her as an advocate of disability rights and of
disabled people's sexuality. Her pictures, however, do not portray her as a
disabledperson when she is depicted sexually.We all know that most people
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do not actuallyreadPlayboybut buy it and go straightto the centerfold.What,
then, have Ellen Stohl and disabilityrights gained by her modeling?Because
her identity and statusas a disabledpersonare renderedinvisible in these porn
pictures, society is never really confronted with the possibility of having to
deal with and interprether impairment(the "fact")in a meaningful way. To
echo Stohl, her disabilitydoes not matter (nor does her impairment)because
both are invisible where it counts (in the centerfold). How can biological
foundationalismoperatehere to explain Stohl's identity as a disabledwoman if
the foundation (impairment)is missing?How can the additivemodel explain
Stohl's identity as a disabledwoman if one of the terms (disability)is missing?
In Playboy,Stohl is merelya woman, not a disabledwoman.
But suppose,for the sake of argument,that we applied the additive model
anyway.We would say something like the following: 1) she is oppressedas a
woman when she is sexuallyobjectified;2) she is oppressedas a disabledperson
in that Playboymakesher impairment-disability
invisible-they deny and hide
it so that they can produce "normal"porn images. However, this two-step
reasoning does not accommodate the contradiction presented between her
life as a disabled woman and her life as an able-bodiedmodel. The additive
model fails because it does not reveal a circle of invisibility and denial, the
intertwining of ideologies and oppressionsthat in the end affirm and deny
Stohl's identity as a human being. In the firstof the above claims, a paradox
re-emerges:by her own claims, Stohl is not oppressedas a woman-instead,
the objectificationof her body reaffirmsher womanhood. This may be rebutted by the feminist litany that women are enculturatedto believe that the
objectificationof their bodies is a complimentand integralto their identitiesas
femalebeings. However,we cannot forgetthe context of Stohl's disability-by
virtue of having a disability,she is not sexually objectifiedbut renderedan
immature, childlike being. The objectification of her body is what makes
her an adult being, according to her (whether the orderlies'behavior would
be pleasing to her were she not disabled is difficult to determine from the
interview-however, what we need to observe in this situation is her profound
relief in understandingthat she was being perceivedsexually).But here again
we are faced with another paradox:in Playboy,the objectificationof her body
takes place only by denying her disability,by renderingher impairmentinvisible. We cannot allow ourselvesto be temptedby a quick-fixcircle of reasoning
that argues that Stohl can be an adult if we simply overlook her disability.
There are too many demands (disability rights and identity issues, feminist
concerns and liberatorypolitics of sexuality,to name a few) to believe that we
can merelylook past her disabilityand see a full-fledgedhuman being. In this
society,in the pagesof Playboy,Stohl needs the (feminist-eschewed)objectification of her sexuality to be seen as adult-but that very sexual objectification
is not possiblewithout denying her disability.
Alexa Schriempf
67
Along with Jenny Morris, I do not believe that being a disabled woman
means that I am female on the one hand and impaired on the other and
that I am representedby the sum of these two categories.My position is that
acknowledgingdisabled women's issues is a crucial but insufficient step, for
up until this point our efforts to addressthese issues have been shaped by
materialistframeworks(medical, social, and feminist models) that result in
amputatingkey aspects of disabled women's lives. I argue that in order for
feminists and disabilitytheoriststo exploredisabledwomen'sissues,we need a
radicalreworkingin the way we approachthe body and its role in society.
INTERACTIONISM AS A BRIDGE FRAMEWORK
FOR A FEMINIST THEORY OF DISABILITY12
Feminist readersof this paper undoubtedlywill be familiarwith the concept
of starting theory with the lives and experiences of specificgroupsof people.
Establishinga feminist theory of disabilityrequiresthe profoundlyimportant
recognition that women with disabilitieshave not been "trapped"by the same
issues that non-disabledwomen face, as I pointed out in the introduction.But
it also demands the recognition that women with disabilitiesare not dually
oppressed,doubly handicapped, or double whatever;instead they embody a
complex of interwoven situations: "genderreaches into disability;disability
wraps around class; class strains against abuse; abuse snarls into sexuality;
sexualityfolds on top of race ... everythingfinallypiling into a single human
body"(Clare 1999, 123).
In pursuingthis alternate understandingof disabledwomen, I argue that
we need to adopt a new frameworkthat enables us to promote an exchange
between disability theory and feminism.'3The point of such a dialogue is to
take responsibilityfor understandinghow bodies-marked by gender and by
disability,by impairmentand sex, among other things-are formedin, created
by, and acted upon by society, and also act within and impact society. Donna
Harawayexplains the need for a new framework:
I think my problemand "our"problem is how to have simultaneouslyan account of radical historical contingency for all
knowledgeclaims and knowing subjects,a critical practicefor
recognizingour own "semiotictechnologies"for making meanings, and a no-nonsense commitment to faithful account of a
"real"world.... We don't want to theorize the world, much
less act within it, in terms of Global Systems,but we do need
an earth-widenetworkof connections, includingthe abilitypartiallyto translateknowledgesamongverydifferent-and powerdifferentiated-communities. We need the power of modern
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critical theories of how meanings and bodies get made, not in
orderto deny meaning and bodies, but in orderto live in meanings and bodies that have a chance for a future.(1991, 187)
In payingattention to disabledwomen'sissues,we need a new way of thinking
aboutbodies that departsfrombiologicalfoundationalismand viewsourbodies
as radical sites for meaning and knowing. Because of their plasticity, their
abilitiesto be craftedinto superiorbeings and to breakdown or be injured,our
bodies are at once powerfuland weak, insuperableand vulnerable.If we are to
satisfyHaraway'sdemandto live in bodies that have a chance forthe future,we
need to understandhow disability"getsmade."I borrowNancy Tuana'sterm,
to describe the way we can begin to addressthis question
"interactionism,"i4
of how disabledbodies get made. In choosing this term, I wish to emphasize
the move away from binarisms and towards a recognition of the materialsemiotic.15
Interactionismis foundedon the principlethat everythingis "alwaysalready"
social and material.This is not an extremeconstructivistposition. Materiality
always already impacts the social-that is, bodies are not presocial nor are
social practices divorced from materiality.Layeredupon this premise, other
"elements"or "categories"are also seen as interactive.Forexample,to speakof
biologyas "interactive"is to understandthat there is no simply"objective"fact
of the matterto be uncoveredby the processof scientificstudy-the biological
will alwaysbe embedded in a social, human/environmentcontext. Likewise,
that which is "social"will be understoodto be composed of and contributing
to that which is "biological."Thus, the lines between things like "sex"or
"impairment"("biological"entities) and "gender"or "disability"("social"entities) become blurred.There can be no bio-social split in this account. "Tosay
that the body is 'alwaysalready'cultureis not to deny that it is 'alwaysalready'
material;just do not make a dichotomyout of it" (Tuana 1996, 60).
Tuanauses the exampleof bodybuildersto show how at the so-called "most
basic level" the body is a fluid,plastic organ that defies the static boundaries
between biology and culture:"Bodybuildersperformsex by transformingflesh.
Culture [interacts]with biology.Biologyis a well-springfor performativity,but
it is neither fixed nor static. Nor is it a completelyplastic backgroundthat the
social formsinto particularstructures.It is active, productive,acted upon, and
produced.There is a materialitythat must alwaysbe taken into account, but
not separatedfromthe discursive.Indeed,the discursiveis itself markedby the
body" (Tuana 1996, 63). Using the premise that bodies are material-semiotic
interactions,Tuanaarguesthat the complexrelationsbetweenbinarismsshould
be viewed as "emergentinterplay,"ratherthan as dichotomous(2001, 223).6
The adoption of a specific metaphysicwill motivate the recognition that
Tuanaproposesthat
binarismsare to be re-fused17:
Alexa Schriempf
69
contemporaryphilosophies of the body must be supplemented
with a new metaphysic that treats the relationship between
bodies and culture as a dynamic [interaction],that refuses to
treat nature and nurture as dichotomous, and that rejects a
mechanistic, additive model. Feminists must replace the traditional physical object metaphysic,wherein each object has
essential and accidental characteristics,with a process metaphysicsthat emphasizesphenomena. (1996, 61)
Tuana further explains that a process metaphysicsis one that views nature
and nurture not as separateand dichotomous processesbut as alwaysbeing
dynamicallyinterrelatedand emergent(1996,61).With this processmetaphysic
in mind, let us returnfora momentto Crow'spositionon impairment/disability.
Crowarguesthat impairmentis, at its most basic level, an object or a fact of the
body. Impairment,as an object, is then acted upon or interpretedby society
to mean a disability.This view is a perfect example of the traditionalobject
metaphysicthat Tuanasuggestswe replace.Impairmentis an "internallyfixed"
object and is acted on by other things only externally. That is, the basic
core unit of what constitutes an impairmentremains unaltered.What is an
impairment,at its most basic level, as a pre-social,meaningless object?It is
simplya physical/anatomical/mental/bodilydeviance, accordingto the object
metaphysic.We are,by now,well-schooledin arguingthat this bodilydeviance
in and of itself does not entail disability.
However,I want to point out that this traditionalobject metaphysiccarries
an automatic and unyielding understandingof impairment as not normal:
impairment is "internallyfixed" and is signified only by its departurefrom
an equally fixed norm. If we follow Crow in accepting that impairment is
objective, pre-social,and internallyfixed, then it becomes impossibleto challenge the deviance froman able-bodiednorm implicatedin the physicalobject
metaphysic.Impairmentcannot be "meaningless"or "factual."To think of it
that way is to endorse a bio-social split as well as to create a scenario where
impairment itself will be always alreadydisabling materiallyand culturally,
simply by a de facto deviance. The impairedbody thus comes to indicate an
amputatedbody-one that never quite fits.
Along with Crow,I advocatea returnto the impairedbody,but at the same
time I wish to re-fuse its impairmentand its disability.I am suggestingthat
"impairment"and "disability"be understoodas interactional.That is, there
is no clear line between the two; neither one can be relegatedto either the
"biological"or the "social"realm.Impairment,like disability,becomesa partof
the social fabricand is no longersimplya materialdescriptionof a meaningless
bodily reality.18
Disability,like impairment,describesnot just society'sresponse
to impairedbodies but also how those bodies are shaped both materiallyand
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culturally. The interactionist model describes claims of "impairment"and
"disability"as those which emerge from a historical and cultural tradition
of classifying bodies, objects, behaviors, and so on. Labeling impairmentis
as value-ladenand political a practice as is labeling disability.Disability and
impairmentare both alwaysabout bodies in social situationsand thus always
about the materialand social conditions of not just one's body and its abilities
but also of one'senvironment.Classificationtakesplace in a social context that
is governedby normsthat emerge,in part,out of ourparticularembodiments.If
these normsdepictcertainbodies as "able-bodied,"
then other bodiesarealways
already"impaired."To have an impairmentthen becomes as disabling as the
lack of social and physicalaccess. Shelley Tremainexplains:"Itis importantto
recognizethat ideas and classifications[emergeand] work in a culturalmatrix
of institutional practices."19
Effortsto separateimpairmentand disability,as
the social model does, will alwaysmiscarrybecause they fail to recognize the
material-semioticcomplexity of the multiple interactionsbetween body and
culture, nature and society, sex and gender,and impairmentand disability.I
am not advocating that we cease to make distinctions at all-I am arguing
that we cannot make the distinctions dichotomous; instead we have to be
clear about and accept responsibilityfor the impact of the distinctions that
we do make.
To clarify this, considerthe patient-doctorscenario again. Let us firstfocus
on the conception of sexuality framing this interaction, and from here turn
to a discussionof how the conception and embodimentof sexuality intersects
with whether the doctor'sresponse stems from his perceptionof the physical
condition as an impairmentor as a disability.I arguethat it makes little sense
to ask this question, let alone answer it, because regardlessof whether the
doctor is viewing his patient through the lens of "disability"or through the
lens of "impairment,"
he will still fail to understandthe questionbeing asked.I
want to look at the conception of sexualityunderlyingboth the patient'sneed
to ask this questionand the doctor'sresponse,becausesexuality,eroticism,and
erogenouszones are clearlymaterial-cultural.By understandingthe materialcultural interactionismin sexuality and how sexuality is markedby the body
and vice versa, we can understand better how things like sex-gender and
areinteractionistaswell becausethese arebodilymarkers
impairment-disability
that cannot be separatedfrom sexuality.
Any human body has erotic sites that producepleasurablesensationswhen
stimulated;but how are these sites located and identified?At present, our
dominant conception of what body parts provideerotic sites is framedby the
context of an intercoursemodel of sexuality where what matters are those
sites associatedwith that model. Forexample,within an intercoursemodel of
sexuality,male and femalegenitaliaconstitute the erogenouszones.These sites
undeniablyprovidereal, physicalexperiencesof erotic pleasure;however,the
Alexa Schriempf
71
possibility that they do provide erotic pleasureis shaped by our concepts of
eroticism.The physicalityof the physicalresponsein erotic pleasureis shaped
by social discourses,which arethemselvesshapedby physicalresponses.This is
what Ellen Stohl means when she says,"evenwhere I have lessenedfeeling, on
my legs, if I can watch a lover touch me, I can be visuallystimulated.Orgasms
reallyhappen in the brain, after all" (Playboy,74).
In evaluating the doctor'sresponse, we need to ask instead how his position, grounded in an intercoursemodel of sexuality, shapes his approachto
impairment-disabilityand to sex-gender.To tease this out, let me pose a few
hypotheticalassumptionsthat emergefromhis heterosexistframework:one, the
doctor assumesthat women in generaldon't receive pleasurefrom intercourse
or that their pleasureis irrelevant;two, the doctor assumesthat the woman's
vagina is the only erogenouszone in sex; three, the doctor also assumesthat
since the vagina is the only erogenous zone, the patient can provide sexual
pleasurein spite of her impairment(disability?)since its nature is such that it
does not interferewith the supposederogenouszone20;four,the doctor assumes
that while the disability (impairment?)would not interferewith the woman's
ability to providesex, it preventsher fromdoing anything else relatedto intercourse,such as gettingpregnant,bearingand raisingchildren,and experiencing
sexualpleasureherself;five,the doctorassumesthat the impairment-disability
is
indeeddistinctfromsexualfunction and that anypossiblecomplicationsarising
from having spina bifida (such as the loss of sensation in those heterosexual
erogenouszones) have no bearing on sex or vice versa.
Becausethe doctorparticipatesin an intercoursemodel of sex that not only
operateson the above assumptionsbut also narrowlydefineswhat constitutes
erogenouszones, he misses the import of the patient'squestion. Is he ableist
or sexist in doing so? The first assumptionalone is enough to suggest that
we can simply reduce this scenario to a case of outrageoussexism, regardless
of the impairment-disabilitypresent. However, if we look again at the third
assumptionabove, it bearsaskingwhat constitutes this erogenouszone. Are a
woman'sgenitalia erotic for the man or for the woman?Forboth? In the case
of the woman with spina bifida,the doctor is not concerned with whether or
not she can experience pleasurefrom her erogenous zones because they are
not erotic for her but for her male partner.Fromwithin an intercoursemodel
of sexuality, the doctor views the woman'sgenitalia as the only relevant site
for the man's erotic pleasure.Because he fails to view this narrowlydefined
erogenouszone as belonging to the woman, it matterslittle whether a woman
does or does not have genital sensations. For the doctor, as long as the spina
bifida does not impede a man's access to that erogenouszone, then she can
fulfill her duty as a satisfactoryprovider.Sexism winds into ableism.
There is furtherableistbiasin the fourthassumption,wherethe doctorhypothetically assumesthat the young woman would never have children, mother,
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or nurture.She would never mother not because spina bifidaperhapsmakes
it physiologicallyimpossibleor medically unadvisablebut because impaireddisabledwomen in this society are not seen as fit to be mothers.Thus, the only
thing she should concern herself with is being an appropriatesexual object;
and because the only really significant thing in an intercoursemodel of sex
is the passivityof the woman'sgenitalia, this woman with spina bifidamakes
an ideal body for a man's erotic desire. She supposedlyhas limited mobility,
limited sensations, and no real capacity to mother: the doctor'sview is that
men who have sex with her do not need to worryabout impregnatingher or to
concern themselves with eroticallypleasing her because the part that counts
does not workfor herbutfor them.And so ableismfolds into sexism.
Asking whetherthe doctorviews this woman'sspinabifidaas an impairment
or as a disability does not serve us or the woman at all, for his response is
couched in interwovenableist and sexist biases that emergefrom his conception of and embodimentin an intercoursemodel of sex. Instead,we must ask,
How is sexualityshapedby impairment-disability?
How is impairment-disability
influencedby sexuality?How does impairment-disabilityexist as a wellspring
for sexual objectificationwhile at the same time being made invisible in the
face of objectification?The problemof oppressionand discriminationagainst
women with disabilities will not be solved by making distinctions between
impairmentand disabilitybut by understandingtheir interactionand how this
interactionismenables biases such as sexism, ableism,heterosexism,classism,
ageism,racism,and others to feed and sustain each other.
The young woman asksthe questionshe does becauseher understandingof
the physicalitiesof sex is shaped by the dominant culture'sintercoursemodel
framework.As an impaired-disabledwoman who has little or no sensationand
mobility below the waist, she wants to know how she can participatein this
norm. She does not possessthose heterosexualerogenouszones that matterin
this frameworkbecausethose zones arepredicatedupon an able-bodiednotion
of heterosexualintercourse.She framesher question in the way that she does
becauseshe is wonderingaboutother waysof having satisfyingsexual relations
that arenot shapedby an intercoursemodelof sex and becauseshe is wondering
if this model of sex would indeed workfor her. In short, she is wonderinghow
to have sex. Her body is speaking in a myriadof tongues: her cultural body,
impactedby her impairment-disability,wonders if it can experience pleasure
in the ways that societal conventions describe sexual activity; her impaireddisabledbody,shapedby social conventions of sexual intercourse,cries against
its exclusion from the norm. Assuming that she has no genital sensations,
wheredo these bodily murmuringsof Eroscome from?She asks the doctor the
question because she is asking if Eroscan be achieved in a differentway.The
way we think about sexuality at this time impairsaccess to erogenouszones
that with access would shift this woman'sand others'sconceptions and lived
experience of sexual ability.21
Alexa Schriempf
73
In a non-sexist,non-ableist,non-heterosexistsociety,this womanwouldnot
experiencea conflict between her desiresand her body becausethe verynotion
of sexualitywould be constitutedby a multitude.of erogenouszones and erotic
acts. In embodying Eros and realigning erogenous zones in response to her
impaired-disabledbody, the young woman becomes otherwise embodied:does
her impairment-disabilitypersist in the face of a differentlyembodied and
enculturatederoticism?Yes and no, because in an interactionistframework,
and its erotithoughts about the body, its sex-gender,its impairment-disability,
cism are shapedby the body; as the body changes, so too does thinking about
the body.As thought changes,bodilybeing emergesout of these changes.Ellen
Stohl knowsthis lesson well:her firstfearupon becomingdisabledwaswhether
or not she would be able to have sex; later, as she learns to live with and
she discoversand valuesthe eroticresponse
embodyher impairment-disability,
produced in her when a man pays attention to her feet. Her embodiment
changes literallyovernight and suddenlyshe is faced with a body that may or
may not respond and participatein the dominant conception of intercourse;
as she embodies her new body, she altersher thinking about these dominant
erogenouszones and discoversthat she has erogenouszoneseven in those areas
where she cannot sense her own physicality.
We need to give bodies a chance for the future by making it unnecessary
for disabledwomen like Ellen Stohl to have to establish and re-invent their
own sexuality and for disabled women like the young patient to have to
ask about even the possibility of having pleasurablesex. An interactionist
paradigmprovides the best resourcesfor those working in disability studies,
feminist studies, and queer theory to re-conceptualizeand re-embodytheory
and experience so that these bodies can not only survivebut flourish.Interactionism is also the best hope for feminism and disability theory to dialogue
because it demandsthat we assumeepistemic responsibilityfor the categories
by which we live. Becauseinteractionismis groundedin the understandingthat
these categories,distinctions, and classificationsare material-semiotic,we are
then in a position to alwaysbe examining and re-evaluatingour thinking and
our embodimentas we encounter and navigate the worldand its inhabitants.
CONCLUSIONS
In this paper I have presented argumentsfor adopting a new paradigmthat
enables us to research and develop accounts of disability and gender that
alwaysrecognize the inseparabilityof those categorieswe seek to classify as
interrelatedbut separableaxes. I would urge feminists and disabilitytheorists
to consider and adopt an interactionist account that will enable a dialogue
between the two movements.With such a dialogue, it will become possibleto
see what contributionscan be made to both disabilityand feminist theories.
LindaNicholson claims:"evento the extent that the cultureitself links gender
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to biology,a feminist analysisthat follows this approach(a feminismof difference and the biologicalfoundationalismon which it rests) is unableto account
for those who deviate" (Nicholson 1994, 98). Unless feminism takes up an
interactionist account, it will be of little use in aiding disabled feminists to
develop a theory that can explain the gendered nature of disability or the
disabling nature of gender, or include other critical locations; nor will the
"deviance"providedby disabledwomen'sbodies, experiences,and knowledges
be able to contribute to the growth of feminist theory. However, it is up to
disability theorists to examine the ways in which disabled women's bodies
present in the flesh22a living example of how bodies are variableand highly
contextual.
I submit, in closing, a comment made by Haraway in reference to the
"biological female" that can serve us well in understanding how disabled
women'sbodies and experiences,mediatedby and situatedin culture,technology,and nature,can providean avenueforre-fusingthe sex/genderdichotomy23:
"Differenceis theorized biologicallyas situational,not intrinsic, at every level
from gene to foragingpattern, therebyfundamentallychanging the biological
politics of the body.The relationsbetween sex and genderhave to be categorically reworkedwithin these framesof knowledge. I would like to suggestthis
trend in explanatorystrategiesin biology as an allegoryfor interventionsfaithful to projectsof feminist objectivity .... the boundarybetween animal and
human is one of the stakes in this allegory,as well as that between machine
and organism"(Haraway1991, 200). Along with Tuana'ssuggestionthat the
plasticity of bodybuilderscan offer living examples of the interwoven and
interactive processes of nature and culture, I suggest that disabled women's
locations and experiencescan offera living exampleof the mediationbetween
organismand machine. Indeed, without such technology, many of us disabled
would not live past birth, let alone participatefully in public life. Of course,
with the recent technological advances, it is becoming increasingpossible to
correct disabilities in utero, as well as to abort disabled fetuses. Negotiating
the politics of eugenics and euthanasia would require another paper;but I
maintain that if we follow Haraway'sargument that in taking up disabled
women's locations and experiences we treat them not as resources but as
agents, we will soon see the necessity of understandingthe embodimentsand
knowledgespresentedby disabledwomen.
NOTES
I am gratefulboth to myadvisor,NancyTuana,and to the guesteditors,EvaKittay,
Anita Silvers,and SusanWendell,for cheerfullyprovidingthe support,unending
sustenance,and critiqueneededto help me beginand completethis paper.Mairian
Alexa Schriempf
75
Corkerand Eli Clare, through their publicationsand e-mail correspondence,provided
thoughtful, challenging, and ultimately exhilarating dialogues. I would like to thank
also the three anonymous reviewersfor Hypatia. I am most appreciativeof Patricia
Halliday'smeticulousand provocativecritiquesof multipledrafts,her endless patience
in late-night conversations, and her unique insights into the many facets of gender
and disabilityidentity.
1. See Michael Oliver (1996).
2. Similarly,feminists have pointed out that Western societies have an idealized
image of a "normal"body,one that is predominantlythat of a youthful,healthy,white,
Europeanmale. It goes without sayingthat this body is able-bodiedas well;this invisible
assumptionis one that is teased out by disabilitytheorists in the processof theorizing
disability,impairment,and bodily differences.
3. To be more specific, medical establishments typically make no distinction
between "disability"and "impairment."These two are identical-what matters to
medicine are the "facts"of the biological/mentalcondition. Even though they profess
to limit themselvesto the functions of the body,a closer look revealsthat becausethere
is no distinction between impairmentand disability,what gets labeled as impairment
often translates into a disability.That is, the impairmentcalled "blindness"is also a
disability that means that the blind person won't be able to read. The social model
argues,"putBrailleinto a blind person'shands and she is no longerdisabled,but merely
impaired."The medical model doesn'trecognize this.
4. This, of course, depends on the nature of the disability.Forexample, someone
with an acquired disability such as paraplegiaoften is not, nowadays, institutionalized. Likewise,disabledchildren with affluentand caring parentsare sometimesmainstreamed in society, depending on the resourcesavailable and on the willingness of
the family to eliminate barriers.
5. In this paperI use the terminologythat is predominantin the United Kingdom,
especially in sociology.In the United States and in Canada,the social model is usually,
but not always;referredto as the "socialconstructivist"approachor model.
6. Notice that Crow says "all my difficulties."In other words, the body itself is
responsiblefor some difficulties,while others are created by a society that refuses to
accommodateher. This is an importantclaim, because as Crow goes on to argue,this
suggests that there are some aspects of impairment/disabilitythat are difficult and
"disabling"pre-socially.Crow makes this claim against the social model for a number
of reasons,the most significantof which is that it denies and privatizesthe physicaland
personalexperience of disability/impairment(Crow 1996, 209-13).
7. I borrowthis concept fromLindaNicholson (1994). She usesthe term"coatrack"
metaphoricallyto referto the fact that "sex"is often understoodby feminist theoristsas
a biological foundationthat serves as the basis, if not the essence, upon which gender,
the social construction, is "heaped."Following Nicholson, sex and impairmentoften
function as unchanging and meaningless coatracksor biological foundations for the
social constructions of gender and disability, respectively.The disability movement,
like the feminist movement, argues that impairment (like "sex") means very little
until placed in a context of meaning that attributesor denies certain activities, values,
expectations, and behaviors to that body type. Thus, what needs to be challenged is
society's concept of disability,not impairment(see UPIAS [1976]and ICIDH [1980]
76
Hypatia
definitions of impairmentand disability).The equivalent in feminism, of course, suggests that it is society'sconcept of gender,not sex, that needs to be challenged.
8. Other disabledfeminist theoristswho focus on impairmentand disabledbodies
includeJenny Morris(1993; 1996), Nasa Begum (1992; 1996), MairianCorker(1998a;
1998b;1999a; 1999b),MargritShildrickand Janet Price (1998), Carol Thomas (1999),
and RosemarieGarlandThomson (1994).
9. Crow states: "ourinsistence that disadvantageand exclusion are the result of
discrimination and prejudice, and our criticisms of the medical model of disability,
have made us wary of acknowledgingour experiences of impairment.Impairmentis
safernot mentioned at all" (Crow 1996, 209).
10. See Mary Jo Deegan and Nancy Brooks (1985), William Hanna and Betsy
Rogovsky (1991), Susan Lonsdale (1990), and Nancy Mudrick(1983).
11. Deegan and Brooks (1985) use this phrase.
12. I borrow from Susan Wendell's title, The RejectedBody: Towarda Feminist
Theoryof Disability(1996).
13. My arguments for an interactionist paradigm are not new. Susan Wendell,
MairianCorker,MargritShildrickandJanetPrice,Eli Clare,and MargaretLloyd(1992)
have adoptedsimilarframeworksin their approachesto disabilityand its intersectionality with other identities. The importance of dialogue between disciplines is further
emphasizedby Corker,especially in her article "Difference,Conflations and Foundations"(1999b). ForCorker,such dialoguecan only emergewhen disciplinesbreakdown
their rigid dichotomies (personalcorrespondence,2000).
14. Tuana (1996; 2001).
15. Arguably,JudithButlerand Donna Harawaywere among the earliestfeminists
to advocatefor a morecomplex account of woman,by using termssuch as performativity
(Butler 1990; 1993) and material-semiotic
(Haraway1991). Forreasonsof space, I draw
upon primarilyTuana'sand Nicholson's work. Other theorists who employ similar
refusalsof binarismsand biological foundationalisminclude Mairian Corker (1998a;
1998b; 1999a; 1999b), MargritPrice and Janet Shildrick (1998), and Ruth Butler and
Hester Parr(1999). It shouldbe noted that while these theoristsdo not use interactionism to describe their work, I find that they share the same paradigmaticthinking. I
am grateful to Mairian Corkerfor informing me of Butler and Parr'swork (personal
correspondence,2000).
16. This is the position endorsed by Corker as well, in her arguments against
maintaining "material"and "ideal"understandingsof disability and impairment.See
Corker(1999b).
17. Mairian Corkeralso arguesfor a paradigmin which these dichotomies are refused, but also wherein the political strength and motivation provided by the social
modelist concept of "disability"is preserved:"it is perfectlypossible to retain UPIAS'
concept of disabilityas a formof social oppressionwhilst problematisingthe foundations
on which it is built-the conceptual distinction between disability and impairment"
(Corker 1999a, 631).
18. This view will undoubtedlybe (and has been) protested;giving up the claim
that a "real"impairmentis at the basis of having a disability makes possible the lack
of distinction between the disabledand non-disabled.This threatens the basis of the
Alexa Schriempf
77
disability movement by undermining"disabilityidentity."It is commonly understood
in the disability movement that the preferredway of identifying oneself as a disabled
person is left at precisely that-the specific disability (MS, ME, blind, low vision,
deaf, hearing-impaired,etc.) is not centrally relevant to the person's identity as a
disabledperson.What are importantto a disabledperson'sidentity and the subsequent
connection to others who are disabledare the sharedexperiences of being disabledby
society; there are, of course, shared experiences of similar"impairments,"but what is
central is that there is a sharedexperience of oppressiondue to physicaldifference.See
Corker (1999b) and interview with Simi Linton in The Chronicleof HigherEducation
(Monaghan 1998): "I tend not to say [what my disability is] because I think it's a
distraction.... it's not totally irrelevant.... when I say I'm a disabled women, I'm
not talking about the fact that I have an impairment,I'm talking about my identity."
This understanding of identity grounds the following position, held by many disability theorists and activists: "I am not willing or interested in erasing the line
between disabledand non-disabledpeople, as long as disabledpeople are devaluedand
discriminatedagainst, and as long as naming the category serves to call attention to
that treatment"(Linton in Monaghan 1998, 13). I do not claim that such distinctions
between the disabledand non-disabledcannot be made at all. They can and need to be
made, but not in biologicallyfoundationalistterms. I cannot here proposehow we can
distinguishbetween the non-disabledand the disabled,but I suggestthat by examining
and participatingin the knowledgeclaims of other social theories such as feminism,we
might be able to expand and clarifyhow this distinction can be made responsibly.
19. Email correspondencefrom Shelley Tremain(2000) on disability-researchlist,
9 June, 2000.
20. Spina bifida is a gap or split in the spinal column as a result of "improperly"
formedvertebrae.Paraplegiaoften resultsfromspina bifida-but the specificsof mobility and sensation vary individually.
21. I am indebted to Nancy Tuana for the thoughts contained in these particular
paragraphs.
22. Tuana (1996).
23. Refusingdichotomiesis a partof SandraHarding's"successorscience"(Harding
1998), and what Haraway(1991) calls "feministobjectivity,"which is predicatedupon
situatedknowledges.
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