Braille Monitor                                                    July 2009

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On the Origin of Our Rights and Our Struggle

by Ari Ne’eman

Ari Ne’eman delivers the keynote address during the tenBroek Law Symposium luncheon.From the Editor: Ari Ne’eman is the founding president of the Autistic Self-Advocacy Network, a nonprofit organization of adults and youth on the autistic spectrum. He is currently a Sondheim scholar of public affairs at the University of Maryland, Baltimore County. He delivered the luncheon address at the Jacobus tenBroek Law Symposium on April 17, 2009. This is what he said:

The past half century has seen a great proliferation in new kinds of conversation about rights. Once primarily relevant in the context of criminal justice and property disputes, rights-based discourses have expanded their scope throughout our society. We have civil rights, human rights, gay rights, women’s rights, disability rights, immigrant rights, commercial rights, social rights, privacy rights, animal rights, children’s rights, student rights, parental rights, and countless more. Though we may not all agree on the extent or even legitimacy of them, it cannot be disputed that we have broadened our global conception of the role for this concept called rights in our social, legal, economic, policy, and societal frameworks. Yet, at the same time as we have updated the role of rights-based conversations in our society, we remain with some very obsolete ideas about where rights come from. That holds us back.

We go out to the world and tell them in many ways that it is time for our rights to be realized. We talk about inclusion, we talk about integration, we talk about access, but when we are asked why, our answers are typically phrased in the language of either cost-benefit or desperate need. The one turns our civil rights struggle into a conversation on policy technicalities; the other evokes the very charity-oriented model of disability support that we have been trying to escape. Neither type of response brings the understanding and the knowledge necessary to communicate both the nature and the urgency of our priorities because both talk about rights without talking about where they derive. To legitimize our rights, we have to explain where they are from and so show that they do exist in the ways we talk about.

But from what do rights derive? That is the question. The Enlightenment political philosophy that our country was based on put forward the idea of a social contract, arrived at by individuals in a state of anarchy, determining to place some of their G-d-given natural rights in a central government for the purpose of securing the remaining ones. This theory carries with it much charm—it fits with our nation’s philosophy of government by the people, for the people; it recognizes and respects rights as inalienable, not temporal whims to be overridden by the first tyrant with a passing fancy. Unfortunately, it is anachronistic and also inaccurate. There has never been a state of nature, and our modern ideas of rights go far beyond the negative right protections against government intervention that are all this model allows for. The disability community would not be the only one left out by such a limited conception of rights, but we certainly would be one of the first and one of the worst served.

What does that leave us? Where do rights come from? The United States Declaration of Independence says that men are “endowed by their creator with certain unalienable rights.” I believe that to be true—for both men and women, it should be noted. And yet, for our purposes, this does not help us very much. Because the very reason we seek a source for rights in the first place is to help us understand what they are. Barring a theocracy tied to a particular holy text, the belief that rights are divinely inspired does not shed much light on their nature.

You, the people here gathered today, represent some of the most important leaders of a movement devoted to securing and advancing recognition of the rights that have been denied them for a segment of the global population, perhaps more extensively and more pervasively than for any other. For generations upon generations the very idea that our population was discriminated against, was deprived of rights, was not even on the agenda. Disability was—and in many senses still is—perceived as a problem that should be solved by charity, whose persistence could be blamed only on the lack of sufficient humanitarian instincts on the part of the public and the as yet too slow progression of medical science. Disability rights were not on the agenda as for other rights crusaders—that was a province for those who ministered to the poor unfortunates of the world, the sad accidents, the there-but-for-the-grace-of-G–d-go-I angels who gave of themselves and found meaning in those tragic burdens.

Then things started to change—not so much with the world, though it is starting, slowly and not yet by any means surely, but with ourselves. We stopped conceiving of our existences as mistakes, our misfortunes as G–d’s will, and our utility as being grateful for that which hath been given us. We got activated. We got interested. We got angry. We looked out on the world and found the blame for our misfortune lay not with G-d or with medical defects but with a society built up for centuries upon centuries without any thought to the prospect that people like us might live in it. In that moment–and we have each found it at different points in our lives—but in that moment we saw power abused, we saw injustice—in short, we saw wrongs, and so our rights were born. In that moment—that epiphany—the world changed for us, and disability rights were born.

The foundation of our legal system comes from something very similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, the right to a speedy and public trial or not to have troops quartered in one’s home? It is a direct outgrowth of our experiences with the British crown, and it was only once we had that experience with injustice that we could properly understand what justice looked like. A quick look across history will reveal much the same thing. Our national experience with slavery imprinted us with the right to freedom from forced servitude on the basis of race. The gains of the civil rights movement were not just the result of superior organization and a superb moral cause, they were our nation’s recognition—still partial—of the legacy of lynching, segregation, and racism. Anti-Semitism was driven from the country club to the conspiracy-theory fringe when knowledge of the Holocaust came into our homes. Gay rights have advanced because of public awareness of brutal hate crimes such as the torture and murder of Matthew Shepard. Rights come only from wrongs.

Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms—the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community’s having been deprived of something else that would justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency. It was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the twenty-first century. Another example can be found in the recently-signed-into-law ADA Amendments Act. For what reason did the disability community have to reestablish its original intent to work eighteen years after the ADA first came into effect, work once again for a considerable portion of the disability population? It is because the judges who wrote the narrow definition of disability that the amendments sought to fix interpreted the ADA as a law about charity—specifically charity for the most severely impaired—not justice for all those who are being discriminated against.

What does the idea of rights coming from wrongs imply then, if not compensation for having been victimized? It should show us what direction our advocacy should take, and, much more important, it should show the public the reason why our goals are important. For too long our civil rights movement acted by stealth. Even as we built tremendous political power and created civil rights laws and social welfare programs, we often did it, not by making a credible claim that this is the way the world should be, but by playing on the idea that society should show compassion and pity for the disabled. This was not entirely our fault. We’re dealing with media and, as a result, a general public that have not even begun to understand the nature and implications of disability rights. But, regardless of why we are here, we still have to deal with the results of having won our legal and political victories while bypassing the social ones that should have come first. The consequence is that our movement with all the progress it has brought is still seen, in most circles, as one of charity or, worse still, as a stopgap until—be it by eugenics, euthanasia, or medical cures—disability is no longer a part of the human experience. This is what Dr. tenBroek meant when he wrote about our “right to live in the world” and the failure of the broader community to accept that right.

This knowledge places our struggle for recognition of even our victories on the civil rights front in context. Why, almost twenty years after the ADA, do we still see such extensive discrimination and lack of access in employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are nearly impossible for our people to escape? Why, after “Deaf President Now” and many similar such actions are there so many disability organizations and groups that speak about us without us? Why after “Jerry’s Kids” and “Ransom Notes” and countless other examples of unethical fundraising and advertising tactics do we still see media campaigns that devalue our very personhood and cast us as less than human?

The answer is that when we come to the public with our demands of rights and speak those rights to the world with all the passion of our epiphany, the public see only part of the message. They see the demand for rights but not the wrongs from which the rights were born. They look at the individual who uses a wheelchair but cannot enter an inaccessible building and the autistic student who is excluded, as I myself have been, from his home school, and what they see is not an inaccessible infrastructure but needy, pitiful dependents. They may meet our immediate demands for laws and public programs because charity is still seen as necessary and good and proper by many well-meaning souls. However, the enforcement of those laws and the implementation of those programs will never be as urgent or as meaningful a priority to them as it is for the true civil rights movements.

To them this is still very much a conversation about need—not injustice. This is not a petty distinction. To have a conversation about justice is to call for a civil rights movement that all members of the human community should feel a moral obligation to join and support. To have a conversation about mere need is to call only for charity conducted mostly by those who usually do not feel that need themselves and have their own ideas about the manner in which it should be fulfilled.

I am reminded of an experience my group had when leading a protest against offensive advertisements depicting children with disabilities as kidnap victims posted across New York City. The campaign, called “Ransom Notes,” consisted of faux ransom notes from the disabilities that had taken the normal children that were supposedly once in the bodies of now disabled young people. We mobilized thousands of autistic people and those with other disabilities, brought support from two dozen national and regional disability rights organizations, and also garnered some support from sympathetic segments of the parent and professional community. Finally, after thousands of phone calls and emails, our story began to hit the media—with the UPI headline, “Ads Anger Parents of Autistic Children.”

Of course the story was accurately reported in other news sources, and we did succeed in getting the ads withdrawn, but there is a certain sense of frustration over the lack of agency that is allowed our community. Even when every single one of the organizations doing press outreach and explaining our case to the public was a consumer-controlled disability rights organization, the only available paradigm that the media could place this in was one in which we were only passive onlookers as our parents fought on our behalf. Every disability group and most disability rights activists have similar stories.

So, even as we spend more money and more political will on disability issues than we ever have before, we are limited in what we can achieve because the conversation is not one about justice, not one about recognizing wrongs and reforming the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived of it. It is about charity and dependency and all of those other things that infantilize and marginalize us, controlled by those who speak for us on our behalf and without our permission.

The average member of the public does not know about Buck v. Bell or the tens of thousands of Americans with disabilities or perceived to have disabilities who were involuntarily sterilized as a result of the eugenics movement. They do not know about Willowbrook or the countless Americans with disabilities who have had to live out their whole lives in institutions—much less the many Americans with disabilities who still must suffer this segregation. The people in charge of our futures do not understand our history. They don’t see ADAPT calling out, “We Will Ride” or “Free Our People.” They don’t see “Deaf President Now” at Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks fear-mongering television advertisements or Jenny McCarthy and Jim Carey promoting pseudoscientific claims of pharmaceutical company-government conspiracies to poison their children with vaccines. It isn’t just because the money and the media power are in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like mine and a movement like ours. The ideas about dependency run so deep, the charity and victim models are so ingrained, that the response of most reporters and members of the general public to our message is cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us in. Maybe this is why the disability movement has not yet had our Rodney King or Matthew Shepard moment. Since the concept of disabled people as suffering is a natural, normal, expected thing in the eyes of the media and the public, suffering brought on from discrimination or abuse is simply placed in the same, unfortunate-but-unavoidable category as all disability-related misfortunes tend to be.

A perfect example of this can be found in the Supreme Court’s Alabama v. Garrett decision, where the Court struck down Congress’s attempt to abrogate the sovereign immunity of the states from damages under ADA lawsuits on the grounds that there was insufficient evidence to “identify a pattern of irrational state discrimination in employment against the disabled." To a slim majority of the justices of the Supreme Court, disability discrimination is not the result of having built infrastructures for only a portion of the population but a perfectly rational act that the equal protection clause cannot be expected to serve as a remedy for. To quote the Court, “The Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly—and perhaps hardheartedly—hold to job-qualification requirements which do not make allowance for the disabled. If special accommodations for the disabled are to be required, they have to come from positive law and not through the Equal Protection Clause.” Here, once again, disability rights are not matters of equal protection given to full citizens under the law; they are portrayed as matters of charity that good-hearted people engage in.

The good news is that this does show us what our next steps should be. It explains that the biggest obstacle for the disability rights movement’s ascent to the next level of rights discourse in America—placing us on a par with other minority groups based on race, religion, sexual orientation, and similar attributes—is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in the growing Disability History movement, attempting to incorporate the history of people with disabilities and our civil rights struggle into the classroom just as the experiences of other American minority groups have been incorporated. In many ways finding a way to cement our past into the American national narrative will be the best way to ensure that we have a future. It is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobus tenBroek as well as other disability leaders like Ed Roberts and Justin Dart, not just to pay respect to those who have gone before, but to show the world that we have a history of taking control over our own lives and that there is a real and legitimate civil rights movement of, by, and for people with disabilities. To quote Ed Roberts, “The greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” Showing the world those parts of our past where we have confronted the wrongs that are being committed against us and have restored agency to our community is one way for us to take back our voice.

Another thing that we must do is begin to confront, and to confront vigorously, those organizations and groups that speak about us without us. When Jerry Lewis and Voice of the Retarded and Autism Speaks go to the public and claim to represent the needs and perspectives of the disability community with their calls for more pity, more segregation, more eugenics, and more distance from our dream of being recognized as equal citizens in this society, they perpetrate an obscenity upon us. This obscenity nevertheless has use in that it teaches us about how important to the disability rights movement it is for us to take control of our own message and our own community. We must organize not just around laws but around the public conversation on disability, confronting those corporate donors and political infrastructures that give support to these repressive, fear-mongering groups that challenge our right to live in this world. To quote Dr. tenBroek himself, “There are…large and powerful agencies abroad in the land, considerable in number and vast in influence, which remain hostile to our movement in thought, in speech, and in action. Under the guise of professionalism, [they] would perpetuate colonialism. [Their] philosophy is a throwback to the age of the silent client, before the revolution in welfare and civil rights, which converted the client into an active and vocal partner in the programming and dispensing of services. In…[their]…lofty disregard of the organized blind as the voice of those to be served, [they] betray bureaucratic bias that is…[an]…image of the blind client not as a person to be served but as a defective mechanism to be serviced.”

Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activist groups but from individuals and from individual discussion. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members with disabilities, and their coworkers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities. There remain too many people with disabilities who do not yet have the chance to participate in our community and whose identity is explained to them only in medical terms. We must broaden our community and give every disabled person access to the disability culture and perspective. I would like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds. Now you must build foundations underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your attention, and I look forward to working with all of you to bring that dream to reality.


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