Identity Crisis: Disability as Identity

By: Rebecca Monteleone

“Self is seen as a universal human property” (Murugami, 2009)

Hello, friends!

On today’s agenda, we have the issue of identity politics for the modern individual with disabilities. Admittedly, the reason for this is that I am obsessed with Crip Theory and the implications of being “other” in the Western world. And I want you to be obsessed too!



Required reading. Ugh, you guys, it’s the best.

Because my field is intellectual and developmental disabilities, that is largely what I am going to focus on here, but please be aware that a lot of the literature I cite is not I/DD-specific, and can be applied (as far as any single concept can be generalised) across many different groups that identify as disabled. Cool? Cool. 

So, wait, what exactly is identity?

For the purpose of this conversation (ooh, that’s a bit generous, perhaps “for the purpose of this one-sided internet opinion piece), identity is quite simply, “"the condition of being a person and the process by which we become a person” (Kidd, 2001). Or, more to the point, “it is the self as reflexively understood by the person in terms of her or his biography” (Glidden, 1968; NB: italics are my own).

There, that’s pretty manageable, right? One does not require an advanced degree in philosophy to understand that identity is essentially how one conceptualises themselves. Good, yes. Moving on.

But why does anyone care?

Sonia Kruks (2001) defines identity politics as a “demand for recognition on the basis of the very grounds on which recognition has been previously denied,” meaning, in this case, those who claim a disabled identity are asserting that having a disability, being disabled, is a legitimate and valuable perspective. Historically, disability has been viewed primarily as “the outcome of impairment” that co-exists but is essentially distinct from the human being whose body it occupied (Shakespeare, 1996). Furthermore, disability in the classic medical model focuses on the deviation from “normal,” and dismisses the “common social experiences that unite disabled people” by delineating based on impairment ((Shakespeare, 1996). Impairment, which every human being experiences in some manner to some degree, is used to arbitrarily (and contentiously) draw a line around a certain population of people, claiming their difference in biology—and only their difference in biology—is disabling. Now, it would be naïve to claim that physical and cognitive impairments do not have any effect on functioning, but no more naïve than claiming that these are the only factors that impact it. So let’s not do either of those things.

We’re better than that, pals.

Tom Shakespeare, one of the most prolific and influential disability scholars (quoted extensively here), as painted by Tanya Raabe

The medical model quite simply defines people based on their bodies—normal vs. abnormal—highlighting the abnormal, and casting the normal in deep, deep shadow. This dominant identity, like most dominant identities, remains so powerful because it is invisible. Robert McRuer (2006) refers to this system as “compulsory able-bodiedness,” in which “able-bodiedness…still largely masquerades as a non-identity, as the natural order of things.”

“A system of compulsory able-bodiedness repeatedly demands that people with disabilities embody for others an affirmative answer to the unspoken question, ‘Yes, but in the end, wouldn’t you rather be more like me?’” (McRuer, 2006).

That, folks, regardless of your own personal beliefs, is the reality of living with a disability in Western culture. Able-bodiedness is tacitly accepted as the optimum condition, so much so that it’s presence is not even commented on. It is the root of many of the responses to Inspiration Porn (yes, I did just self-reference. No, I’m not sorry), the patronising ideology that colours many social services, and the tragedy/pity model of disability.

Able-bodied and neurotypical individuals do not feel a need to integrate these facts into their identity—instead they are expected. Anyone lacking these qualities? Well, they are immediately exposed not only as “other,” but as fundamentally lacking. It is evident even in the language:

Able vs. Disabled

Normal vs. Abnormal

The latter word in each example essentially means without the quality described by the first word. Disability is the absence of ability. Abnormal is the absence of normalcy. These are not pairs describing different facets of the same characteristic, they are pairs describing a single characteristic, primarily by its absence (note how you rarely hear anyone described as “able”).

Therefore, to embrace a disabled identity is in itself a subversive act. Celebrating the absence of “ableness” grates against the socially-constructed idea that able-bodiedness is both default and optimum condition. That’s correct, identity, which as we discussed earlier, is entirely self-developed, becomes a political act of defiance for individuals who identify as disabled. To not only claim, but to embrace a socially-devalued identity undermines a social system that breeds discrimination. This process, however, can be an incredibly difficult one. If one ascribes to the social model of disability, they are well aware that “persons with disabilities experience [disadvantages] not necessarily emanating from some biological determination, but rather socially, culturally, economically, and politically constructed obstacles” (Murugami, 2009). These obstacles often negatively affect self-esteem, and socially condition individuals with disabilities to internalise their “otherness.” “We have very little access to different values which may place a more positive value on our own bodies,” activist Jenny Morris (1991) writes on the difficulty of positive identity formation. Furthermore, disability is often isolating. Many disabilities are not hereditary (or at least do not appear generationally), and many individuals with disabilities have very few interactions with disabled role models, making collective identity a particular difficulty.

Yet, despite these difficulties, the disability rights and disability pride movements are growing at an exponential rate. More and more individuals with disabilities are stepping forward to claim an identity that has been maligned and denied them for many years, asserting their social and personal value. Disability is not a distinct, nefarious thing lurking inside their bodies, masking their “true selves,” but rather an integral piece to their essential humanness. It is a part of themselves that warrants both recognition and respect. Through the “reconstruction of what is normalcy,” positive disabled identity formation “establishes disabled people as the experts on disability, and disabled people’s definitions as the most appropriate approaches to disability” (Watson, 2002; Shakespeare, 1996).



Disability Pride Event in Columbus, Ohio

And, really, that just makes sense. An individual is always going to be the authority on themselves, regardless of their social value. This extends to people who have been historically and systematically denied the right to claim identity for themselves—those with intellectual disabilities, those with alternative forms of communication. Self-concept is innate in human beings, and self-awareness begins in infancy (Erikson, 1968). Therefore, claiming that individuals with I/DD are incapable of the sort of executive functioning required to understand their identity is, to be frank, total rubbish. If identity is, as we established, the way one understands oneself, than every person has the capability and the right to claim whatever identity they choose. It does not matter if their manner of expressing their identity does not align with preconceived understandings, it does not matter if the language does not contain the accepted jargon, it does not matter if you do not agree. 

The claim to identity is a right, and not one that outside forces can impose. If a person chooses to identify as disabled, they are aligning themselves with a community of like-minded individuals with whom they share some social experience. There is power in identity, particularly in identities that have been historically denied.

I do want to make the point that the right to claim an identity is equally as important for those who may have an impairment and not identify as disabled. People are authorities on themselves, and no one has the right to impose an identity on someone, regardless of intention or perspective. A well-intentioned advocate imposing a disabled identity on someone who does not identify as such is just as dangerous as denying other individuals the right to claim it themselves.

To finish, I’d like to reproduce a poem by disability rights activist Cheryl Marie Wade. I think it speaks for itself:

I am not one of the physically challenged—

I am a sock in the eye with a gnarled fist
I am a French kiss with a cleft tongue
I’m orthopaedic shoes sewn on the last of your fears.

I am not one of the differently abled—

I am Eve, I am Kali
I’m The Mountain That Never Moves
I’ve been forever, I’ll be here forever.
I’m the Gimp.
I’m the Cripple.
I’m the Crazy Lady.

I am the Woman with the Juice.

 

Sources (If not listed here, hyperlinked in text):

Erikson, E.H. (1968). Identity: Youth and Crisis. New York: Norton

Giddens, A (1991) Modernity and Self-Identity, Cambridge: Polity.

Girlin, T. (1994) `From universality to difference', in Calhoun, C., (ed.)
Social Theory and the Politics of Identity, Cambridge, Massachusetts:
Blackwell

Goffman, E. (1968) Stigma, Harmondsworth: Penguin.

Kidd, Warren (2001). Culture and Identity: Skill-Sociology. New York: Palgrave and Macmillan.

Kruks, S. (2001). Retrieving experience: Subjectivity and recognition in feminist politics. Ithaca: Cornell University Press.

McRuer, R. (2006). Crip theory cultural signs of queerness and disability. New York: New York University Press.

Morris, J. (1991) Pride Against Prejudice, London: Women's Press.

Shakespeare, T. (1996). "Disability, Identity and Difference" in G. Barnes & G. Mercer (eds), Exploring the Divide: Illness and Disability. Leeds: Disability Press.

Watson, N. (2002). "Well, I know this is going to sound very strange to you, but I do not see myself as a disabled person" in Disability and Society 17, 5 (2002): 509-527.

Cheryl Marie Wade Poem

 

*Author’s note: I apologise for the variability of my spelling. As an American living in the UK, it is damn hard to keep my s’s and z’s in proper order.*