Be Careful What You Call Yourself

I have been thinking a good deal lately about the psychological and, for lack of a better term, the spiritual cost of being a person with a disability. NO one needs or wants to hear the tiresome statistics about unemployment among PWDs or the discouraging lack of progress enforcing the Americans with Disabilities Act. These are narratives of abjection (to borrow a term from the French critic Julia Kristeva) and over time the mere act of talking about the conditions of marginalization becomes a secondary form of abjection. To paraphrase the old sixties maxim: "You are what you talk about."

No sensible person would advocate avoiding the use of civil rights language, whether we’re talking about women’s rights or Latina rights or African-American rights, or children’s rights. Yet it seems to me that I am increasingly uncomfortable as a representative of "the disabled community" or "the blind community"—not because I would eschew these political realities, but because the insistence that these are my subjects prevents me from being publicly a more reflective or complex person. I have a sensibility that’s different from what you might suppose.

I’ve been walking down the street during my guide dog training with a baseball cap on my head that says "NAVY" and veterans call out to me as I work with my guide dog. I am not a war veteran. I care however very deeply about the plight of our war veterans. I was never in the NAVY but I recognize that the Navy protects our freedoms. I am opposed to the war in Iraq but I support our troops and our sailors. I am patriotic but I don’t believe in imperialism. I am fiercely loyal to the Democratic Party but I think we need a tough foreign policy candidate in these difficult times which is why I was for Chris Dodd and am now for Hillary Clinton.

I am not a blind person when I listen to the opera or swim in the Baltic. I am not a knee-jerk Democrat. As I said some time ago in these pages, I sided with the GOP in their efforts to defend the life of Terry Schiavo.

My feeling is that we must go beyond identification based on race or disability or ethnic origin or gender or sexual orientation for only in so doing can we rebuild a progressive and thoughtful means of public engagement in our nation.

This is what civics used to teach. I want to live beyond our Balkanized era. The cultural critic Lennard Davis calls this idea "dis-modernism" by which he means that the idea of disability is essentially a cultural or social construction. If you build the right architectures and accommodations no one is disabled. Just so, if you assure genuine equal rights then marginalized identities should conceivably no longer exist.

Imagine the better conversations we all would be having.

This is my morning soapbox. Perhaps I’ve taken too much sinus medication. I’m a utopian Sudafed addict.

People don’t like it when you suggest that their Balkanized political identities are not entirely productive. I know. But if you need to have a social society you can join the Optimists Club. Or a good labor union.


Author: skuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

0 thoughts on “Be Careful What You Call Yourself”

  1. I am facing the same dilemma as I grow in understanding over my relation between impairment and disability. although there are of course distinctions between the British and American use of the term, I think that at the end of the day what I want myself as a disabled person is the freedom to exert my civil/social/political rights without having face negative attitudes or structures that hinder my full participation. Yet, in order to get to that point, I feel we must point out the injustice. But, at the same time, as you say, not identify with as our source of identity.


  2. I couldn’t agree more. One thing that I’m particularly interested in is the way we might accomplish this. How do we advocate for disability rights while at the same time not being a person whose sole persona is “Mr./Mrs. Disability”? How do we change something without talking about it?
    I’ve been working on a program of disability education for kids in which I strive to accomplish this very thing. The premise of this animated series is that the narratives are never “about” disability. No little girl in a wheelchair is going to fight for acceptance by her friends at school. In my story, she already is. The story provides the example of how things could be, how they should be as you describe in your post. What’s unique however, is that the disability itself becomes a character in this story (a talking prosthetic leg for example). This way, there is no avoiding disability in the story, but we’re also not talking about it. One of these days I’d like to show you more about this project if you’re interested.


  3. Brilliant, much-needed observations. Keep taking that Sudafed!
    Before the term “deviant” became politically incorrect, we sociologists used to call this the process of
    “claiming a primary deviant identity.” What we were talking about were indeed “narratives of abjection.” (How refreshing to see Kristeva cited.)
    The deconstructionists, God bless them, crafted prettier language. Still, this doesn’t eliminate the sociological factoid that strongly holding a marginalized social status label seems to be a necessary part of the process of coming to psycho-spiritual terms with a state of physical status (e.g., sex, race, ability). Or, for that matter, coming to terms with a social status (i.e., LBGT). At some point, hopefully, this status gets integrated into Self, holds less charge, and doesn’t need to dominate…everything.
    I’m thinking, for example, of how it took nearly two decades for me to realize that I just wasn’t that angry at men any more, that patriarchy was very bad and wrong, but surely there was more to me than being an angry feminist. (I kind of wish I’d figured that out before I went up for academic tenure!)
    There are any number of other “deviant identities” (deviant because they are not normative in society) that I’ve held and continue to hold. But they no longer rule every thought, conversation, and written piece.
    All this is to say, the dominant conversation among PWDs is fairly predictable once you know the nature, extent, and duration of the disability. I would argue that the beginning stages of dealing with the practical realities of being disabled at this point in time, quite appropriately sparks…sparks. But hasn’t every radical (in the true sense of the word, “root”) social change happened as a result of outrage? I think so.


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