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photo of a dawn sky

To a nightmare of knowledge, he opens up the gate

And a blinding revelation is laid upon his plate

That beneath the greatest love is a hurricane of hate

And God help the critic of the dawn.

    "Crucifixion"
    Phil Ochs

 

 

Issue 2
2001

 

Suggested
further
reading

 

 

Scholar Martha Nussbaum writes that "Extreme dependency comes in many forms." Here is Cal Montgomery's response.
Critic of the Dawn

By Cal Montgomery

I. It shouldn't have happened to you," people say. Slight emphasis on you. Institutionalization, they mean.

Sometimes they stop there; sometimes they finish the thought. "You're okay."

I remember the first people who taught me that I was okay and who stood naked in line with me, waiting for a paper cup of shampoo and a turn under the showerhead, on bath nights.


Martha C. Nussbaum, "Disabled Lives: Who Cares?" in The New York Review of Books, Jan. 11, 2001.


Or, "You were misdiagnosed." And I remember the times I could not speak and had no keyboard, the times I slammed my head against a wall over and over until the staff looked for a helmet I couldn't remove, and I am sadly grateful that they haven't known a world in which communication and self-respect are possible only with blood and broken bones.

"But for some people. . . ." They're thinking of people who lived once in institutions, now in cardboard boxes, thinking those are the options. It's a false choice: the supports, not the people, have failed.

"That shouldn't have happened." Emphasis on that. They talk about regulations, oversight. I think of the glossy literature my parents read, the architecture they admired. They bragged about the place that "cared" for me. I think of the reality of that place, the powerlessness, the punishment. I cannot wish it on anyone.

My family will tell you it shouldn't have been so hard on them. They spent a lot of money, time, energy, getting me where they wanted me. Keeping me there.

I spent a lot of time and energy fighting guardianship. It was explained like this: if I voluntarily consented to what "my team" had already decided was going to be done to me -- the agitated stupor of drugs, the unrelenting pain of electroshock, the degradation of smiling "yes" while being told my every experience was wrong -- no one would file for guardianship. If I refused, they'd show a judge my labels -- I wasn't "high-functioning" enough to be taken to see him myself, they said -- and my parents would voluntarily consent for me the rest of my life.

Shotgun consent, sure, but they got it. When you choose between traps, you choose the one you might someday escape.

My sister got a job. My parents paid her college tuition, but there was no money for textbooks and incidentals. My sister has expressed her anger that I "got" so much while she worked.

I'd rather have a job than be tied down in an isolation room, but I suppose we have different goals.

Martha Nussbaum published "Disabled Lives: Who Cares?" in the New York Review of Books, and people started talking about her portrayal of disability.

"She understands."

"Finally, our issues are getting coverage."

"It bothers me."

"How can she leave us out like that?"

And I began to struggle with my own response.

I struggle with her association of disability with "extreme dependency," with her quick assumption that caregivers -- or, as in Nussbaum's case, relatives -- speak for disabled people, with her assumption that disabled people are dependent on others for the development of their talents in a way that nondisabled people are not, with her assumption that "care" as we know it today is benevolent.

I struggle in the context of a focus on "the able disabled" who take certain cognitive abilities for granted, with the quick assumption that phys-dis leaders speak for people with cognitive impairments, with the assumption that all people, disabled and non-, develop as human beings unconnected to other people, with the assumption that the "care" families provide is always oppressive.

I struggle.

II. As I move through my life -- a disabled person -- two companions haunt me. They are imaginary, but in my dealings with other people, they are forceful. Sometimes other people cannot seem to sense me behind those phantoms. Sometimes I am forced into their masks, and falling out of character has consequences.

One I think of as an uncle. A descendant of Carrie Buck, of the Jukes and the Kallikaks, a cousin to the Rain Man and the wild children of the forests. You've seen him rocking in the corner, headbanging. He cannot speak and, people assume, has nothing to say. Sometimes he is a cute, incomprehensible child; sometimes a terrifying, incomprehensible adult. He is usually uncomprehending but sometimes manipulative; usually repellent but sometimes seductive. Violence swirls around him: sometimes he is a target, sometimes a perpetrator, sometimes both. He is an enigma, interpreted by others: he cannot define himself. He embodies the stereotypes, the paradigms of cognitive impairment, of my own particular set of labels. He's no different from me -- but he is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no resemblance. Bruce, I call him in intimate moments, after a caricature I once saw on television.

The other I think of as a sister. A shadow twin. The daughter my parents wanted in my place, pretended they had. The sister my flesh-and-blood sister wished for. Me, but with impairment denied, defused, removed. Me, but with grace, stamina, social skills. She speaks for herself -- then again, she doesn't have to. She's no different from me -- but she is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no hint of resemblance. Mary, I call her, after the aunt whose other name I was given.

I am encouraged to disassociate myself from my uncle Bruce, just as women, as African-Americans, as physically impaired people have disassociated themselves from him. People suspect, believe, that segregation, exclusion, institutionalization, may be best for him, for others. Best for that nebulous us. Bruce, they believe, would never participate in disability politics. He'd never be able to. But he represents impairment. So often, when people talk about protection and care, they imagine loving my uncle in my place.

If I am pressured to disown my uncle Bruce, I am also pressured to pass for my sister Mary. She's more comfortable for other people. She, of course, would never waste time on disability politics. It would never occur to her. But she represents disability. So often, when people talk about barrier removal and leveling the playing field, they imagine freeing Mary to live my life.

I know I am not my uncle, because people tell me, in subtle and not-so-subtle ways. "You don't seem disabled," they say. In the tiny stress on you, I know my uncle, and I know we are being distinguished. People relax, ever so slightly, when they read the words on my communication board: they realize that even when I cannot speak, I still use language much like theirs. I know too well the agitated stillness when I cannot find words to make myself clear, cannot fathom others' meanings. In the sudden release of physical tension that betrays others' reassurance, I know my uncle.

I know I am not my sister, because people tell me, in subtle and not-so-subtle ways. They use words like perseveration, echolalia, concreteness, self-stim, self-injury. In these words, I know my sister, and I know we are being distinguished. People stiffen, ever so slightly, when they see stairs, when they realize they've touched me, when they spot throbbing fluorescents, when they realize the lecture isn't captioned and there is no text. In the sudden physical tension that betrays others' discomfort, I know my sister.

I also know that, had I been a part of my father's generation, Bruce, not Mary, would have been my twin. I am Bruce's heir in the way that today's disabled children are Mary's. I wonder, when they reflect on that heritage and how it has shaped them, what they will think. I wonder, too, how they will remember my uncle Bruce, and I recall my own fumbling for a heritage among half-formed stories of village fools and eccentric aunts, residents of Hartheim and Bedlam.

I choose not to emulate or to repudiate either of my phantom relatives. That decision reflects my understanding that there are those whose lives are dominated, with or without their consent, by phantoms much like Bruce or much like Mary. It reflects my conviction that the representations of disability that give Mary and Bruce detailed life are less than reality, are both more and less than truth, that I am being asked to choose between two stereotypes, not two realities. It reflects the heritage I claim as mine, the community, the communities, to which I believe I am responsible.

"Disabled person," I call myself. Maybe it's time for a nod to terminology.

In Britain in the 1970s, disabled people began to criticize the link between physical difference and social death, began to draw a distinction between impairment -- which has to do with the ways we differ from one another -- and disability -- which has to do with the way impaired people are treated in a society that does not plan for impaired people.

Disability, on this understanding, is not in-ability but dis-enablement, and nondisabled people are not, in comparison to us, innately able. They are, rather, enabled by a society set up to accommodate their needs and not ours.

Disability is injustice, not tragedy; unequal treatment, not inherent inequality.

I opened my textbook to the wrong page.

"We hold these truths to be self-evident," I read, "that all men are created equal." And I was hooked.

I was na´ve: I was ten, and if I hadn't grasped the ways inequalities played out in the US, hadn't heard of disability rights, hadn't tuned in to criticisms of saying men and meaning humanity, I'd heard of slavery. But in that moment, I failed to make the connection.

We hold these truths to be self-evident, that all men are created equal . . . I thought it meant that every human being was valuable, none more than another. That everyone had a chance, none more than another. I thought it was simple; in my simplicity I thought it was true.

I was a child in love with a childish conception of equality. But I was in love.

The teacher spoke, and I turned to the correct page.

The incantations that invoke Mary, call her up to stand between me and the world, are variations on a theme: I am the same. Bruce is banished. The incantations that invoke Bruce and banish Mary are variations on a different theme: I am different.

"Same as what?" you ask. "Different from what?" The reference point -- the imaginary person around whom society is planned -- is a pale and obscure figure, but those who have searched him out report that he is white, straight, nondisabled, educated, mature, moneyed, and male.

Those whose sameness to this reference point, this mythical man, has been stressed -- whose struggle in his world has been blamed on choice, on moral lapse -- may quite reasonably insist on their difference. "Disabled and Proud," reads a tee-shirt. Those whose difference from him has been stressed -- whose exclusion from his world has been considered justified -- may quite reasonably assert their sameness. "I am not a puzzle. I am a person," reads a button.

As different people experience disability in different ways, have it attributed to different sources, adopt different tactics for different situations, there are shifts between the campaigns of sameness and the campaigns of difference -- and the disability community is shattered, broken into subcommunities with different traditions, different priorities, different dialects to explain different experiences.

Let me talk for a moment about impairment. Impairment is about how we differ, one from the next.

I know that tactile defensiveness -- disliking touch -- is impairment, because I look around me and see other people seeking out exactly that kind of physical contact that is painful to me; because I notice that I come from a species that enjoys the mechanics of sexual reproduction; because I know the fiery pain of "friendly" touch. I know that prosopagnosia -- not recognizing faces -- is impairment, because I look around me and understand that not recognizing a face is almost always a moral failing or a moral judgment.

I know I am impaired by looking to others. I have looked to those who write psych, neuropsych, PT, OT, speech-language reports. To those who write books about people like me, who make careers working with people like me. I look to my interactions with nondisabled people, to the social and physical worlds they build for one another. They teach me about myself. They tell me what about me is strange to them, what makes them uncomfortable, what makes them laugh. They tell me I am different. They tell me how. And they tell me which parts of that difference are valuable, and which are emphatically not. They tell me about impairment.

I know I am impaired; I know that I have much in common with my uncle Bruce.

Someday, they told me. Maybe . . . years from now. If I worked very hard. I might -- They couldn't guarantee it. They weren't promising. Just dreaming. Hoping. Imagining what I might achieve.

Someday I might go for a walk on grounds, unaccompanied by staff.

Perhaps it is enough to say that their dreams and mine did not coincide.

But let me talk for a moment about disability. Disability is about a re-imaging of what it means to be treated differently.

If it is true that I know my impairment by looking to others, it is also true that I know my disability by looking to others. I look to those who attempt the same things I do, I look at the barriers they face, and I judge my set of barriers against theirs. If I cannot get into the meeting room, can they? If I cannot find meaning in my teachers' sounds, can they? If I cannot get people in power to pause while I make my points, can they? I look to others to tell me what about my life is limited, constrained, disabled. They tell me my life is different, and they tell me which parts of that difference should be accepted, and which should emphatically not. They tell me about disability.

I know I am disabled; I know that I have much in common with my sister Mary.

You know, they told me, I don't look -- Nobody would have to . . . I could be just another crip.

And as if I were just another crip, they started with the jokes and comebacks.

"She asked me whether my toenails still grow; I asked her whether her hair still grows."

"They want cognitive disability representation? Why don't they just ask 'SuperChris': he's cognitively disabled."

"They may be able-bodied, but we're able-minded."

They didn't mean me, of course. I wasn't like that, wasn't like them. They meant no offense.

Perhaps it is enough to say that my vision of "the disability community" and theirs does not coincide.

And, because disability is so identified with dependence, let me talk for a moment about that.

I am a dependent person. I eat food whose final preparation I handle myself, but which has come to me across roads laid and maintained by other people from stores staffed by other people -- and even those people didn't grow or raise or harvest or slaughter any of it. I wear clothes made by other people from cloth woven by still others. I am human: I depend on others. And this is called independence.

I am a dependent person. I need human contact, most of which I receive through an Internet built and maintained by many other people. I do not know my neighbors, but even face-to-face interaction requires someone's cooperation. I have learned from my time in isolation rooms that I can handle a while without human interaction, but that eventually it will become unbearable. I am human: I depend on others. And this is called independence.

I am a dependent person. The words I work with were taught to me by people who wrote and read them before I traced my first A. The language I work in is a living entity, shaped and grown over centuries by billions upon billions of speakers. The ideas I work on are part of a tradition nurtured by many thinkers. I am human: I depend on others. And this is called independence.

I am a dependent person. I do not -- have learned that I cannot safely -- live alone. I require the patterns of life to be modeled for me over and over again. I struggle to get, and to keep, jobs in workplaces designed for "plug-and-play" workers. I learn some things quickly and easily; I need to be explicitly taught many things that seem obvious to others. I am human: I depend on others. And this is called dependence.

Independent can mean self-governing. It can also mean self-reliant. It can deny others' influence on our decisions or others' support in carrying those decisions out.

Dependent can mean controlled by others. It can also mean requiring the support of others.

None of us, of course, is independent in either sense. We grow up in social contexts, supported and denied, enabled and disabled by those around us.

But some rely on supports which are so common as to go unnoticed, while others use support that is atypical and therefore apparent. Some supports are provided by the community as a whole and go unnoticed, while others are borne -- or not -- by a small number of people whose lives are profoundly affected.

So I know the ways in which I am dependent not by looking at how I depend on others, but by watching other people. I look to nondisabled people to tell me which kinds of dependence are recognized, which are devalued. I know the shame that comes with asking for "inappropriate" help.

Within the disability community, too, there are fault lines around which kinds of dependence we recognize, which kinds we devalue.

III. As I move through the public debates -- a disabled person -- I too often find one of my phantom relatives represented as a two-dimensional billboard figure, the balancing lessons of the other ignored.

There are those in the community whose rhetoric calls up my uncle Bruce in robust and noble detail, relegates my sister Mary to the status of supercrip or overcomer, or dismisses her as a wannabe.

There are those whose rhetoric evokes my sister Mary, strong and proud, and dismisses my uncle Bruce as too incompetent for disability culture, disability pride, disability rights.

There are people who call my uncle Bruce a threat to public order, people who call my sister Mary a whining opportunist, people who play "divide and rule" by attacking one or another representation of disability and encouraging defenses along -- but never across -- the traditional fault lines. And the fault lines that divide our community -- the distinctions between those whom we treat as blocked by barriers and those whom we treat as innately limited -- the very existence of the fault lines troubles me.

In one sense I cannot bring myself to condemn people with sensory and mobility impairments who distance themselves from Bruce. No more can I bring myself to condemn women, people of color, and other groups for doing precisely the same thing. People make this move in exchange for better conditions, better opportunities, better lives.

But I recall that the price of distancing oneself from a stereotype is to reinforce that stereotype, and the related injustice, for those who cannot likewise distance themselves. It saddens me to watch. A disability movement -- disability rights or independent living -- which stresses "the able disabled" and overlooks "the unable" is less than it could be. Less than it should be.

In one sense I cannot bring myself to condemn people who can't imagine their loved ones benefiting from the ADA, who can't imagine their loved ones as full members of a society much like ours, who struggle against isolation in the name of integration, who work to create utopias where disabled people will be loved for what we are rather than scorned for what we are not, sheltered from hostility, free to live good lives.

But I recall how easily protective separatism becomes coercive segregation, and it saddens me to watch. A disability movement -- a protective movement or a normalizing movement -- which stresses "the most vulnerable" and overlooks "the capable" is less than it could be. Less than it should be.

Dismissing the struggle of those who make it to university and discover there that the lectures and texts are available only to others, dismissing the struggle of those who exert great effort to communicate pleasure and displeasure, diminishes the movement.

In her provocatively titled article "Disabled Lives: Who Cares?" Martha Nussbaum begins with the stories of three disabled people. Jamie and Arthur are cognitively disabled children, and Sesha is a cognitively and physically disabled adult. The stories Nussbaum tells about them are only nominally theirs -- they are framed and controlled by the people who love them and care for them.

My uncle Bruce is splayed across these pages, posed by those who tell "his" story for him -- for he seems incompetent to tell it himself.

Nussbaum's view of disability is truncated by her unwillingness to consider the ways in which the physical and social environments limit our ability to develop human powers and to enjoy liberty and independence, the ways in which human dependence is highlighted or downplayed in a variety of ways. Her view is no more the view of disability than is one that says, "We may not move like you, but we think like you, and that's what's really important."

Her reliance on these three stories, on three books which explore -- in various ways -- the lives and loves and labors of family and paid caretakers, means that her view of disability, as expressed in these pages, is incomplete. She draws on an old and familiar series of clichÚs: disability as dependence, disability as innate limitation, disability as political voicelessness. She comes at disability through feminism and commits the traditional feminist errors about disability, rather than reaching for the vitality that a fully realized interaction between feminists and those concerned with disability can offer.

"Parents are the real experts," went the old parent-advocate slogan, challenging professional power over disabled lives. They demanded that their children be sheltered, nurtured, loved in the way that the best parents love their children. That was a wonderful advance: celebrate it. But more and more disabled people are now challenging parental power and the image of disabled people as children; and Nussbaum's article, which ignores those critiques, is much less than it could have been.

Nor does she accurately assess the present situation as compared to the past. She suggests that in previous generations, children like Jamie and Arthur, like the child Sesha was, would have died or been institutionalized. If she is thinking of reasonably well-off and recent Western families, she may be right. But there have been other families, other communities, in recent generations and earlier, that would have made a place for the Jamies and Arthurs and Seshas of the world.

Nussbaum's approach to "fair treatment" of disabled people draws on the popular images that give rise to Bruce, on the importance of all people "hav[ing] the chance to develop the full range of their human powers, at whatever level their condition allows, and to enjoy the liberty and independence their condition allows," on the supportive role that nondisabled people play. She assumes our limits are innate, our society benevolent. Those are not safe assumptions.

In discussing equality, she argues that many traits, like race and sex, should not play a role in determining social advantage. "[S]o, too, one would have thought, the facts that one person's body is more dependent than another's, or that one has a dependent aged parent, should not be sources of pervasive social disadvantage." But she seems oblivious to the extensive work that has been done on how -- not whether, how -- what we call impairment has been used to "justify" significant social disadvantage. The important critiques that have arisen from the paradigm that gives me Mary are ignored.

Following this well-trod path, Nussbaum urges that we learn to value those who cannot make the expected contributions to the larger community; she does not consider how the larger community limits who may contribute. She urges that we provide better support to those who are dependent, but she does not question how we decide who is dependent and who is not.

Martha Nussbaum's error is not unique. My sister Mary lives in much of the writing in disability studies, work by scholars who have made a parallel but opposite decision to leave my uncle Bruce out.

"Nothing about us, without us," says the South African slogan; without a sufficiently broad definition of us and a sufficiently reflective approach from those thinking and speaking "about us," this slogan can be used to justify a change of regime, rather than a true revolution, for most disabled people.

"Equal rights are not special rights," we shout -- but of course it is precisely the distinction between equal rights and special rights that we debate. It is precisely the question of when differences should be acknowledged and when they should be ignored that we cannot answer in unison.

Disability rights activists addressing dis-enablement have argued, as have other rights activists before us, that to build an environment -- social or physical -- that benefits some people and not others is discrimination.

Those who oppose these rights arguments say that the environment is fine, and that efforts to level an already flat playing field are just another form of discrimination.

Care activists, focusing on the in-ability of those for whom they care, argue that any playing field must provide "safe" areas in which to nurture those who cannot play, and protection for those who work to for that "safety."

Those who oppose these care arguments maintain that the rough-and-tumble competition on the field is natural, that those who can't handle it -- or choose not to -- should yield to those who can.

Rights activists present a picture of someone like my sister Mary and call it the face of disability. They argue that the Marys of the world can and should be accommodated -- but they also stress how easy such accommodation is. Care activists worry that those who cannot readily be accommodated -- some of whom, they suspect, cannot be accommodated at all -- will be left behind, left out, left unprotected.

Care activists offer a picture of someone like my uncle Bruce and call that the face of disability. They argue that those who are inherently alien to our society should be accepted, embraced in a different way. Rights activists worry that this acceptance of intrinsic inability will slow barrier removal.

There are two distinct debates here, two distinct understandings of disability.

I read Martha Nussbaum's "Disabled Lives" and I chuckle at the play on words. Where she sees un-able lives, I see dis-enabled lives; where she sees dependence and inability, I see barriers.

And yet . . . the barriers are not so clear, not so easily addressed as some writers seem to believe, and it is not as clear as we might think how we should re-envision our society to welcome, to value, to enable all people to full membership.

I read Martha Nussbaum's piece and I struggle with it, and with the context in which I read it.

I read Martha Nussbaum's piece and I realize again that I wish I were reading "crossover" work that draws on the several traditions of disability, work that takes the best of each tradition and brings it together in something new.


Suggested further reading:

Steven J. Taylor, Disability studies and mental retardation. Disability Studies Quarterly, 16(3) (1996)

Union of the Physically Impaired Against Segregation. The Fundamental Principles of Disability (London: UPIAS, 1976)


I read Martha Nussbaum's piece with a sad sense of her limits, and of my own. "Disabled People: Who Cares?" is a piece about where we are, not where we can go.


People on whose intellectual support I was dependent during the writing of this piece include Amanda Baggs, Jesse Kaysen, Sarah Miller, Sharon Snyder, Sarah Triano, and Laura Tisoncik. Thank you.

 


Cal Montgomery is an activist, writer, and speaker focusing on disability issues.

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