http://www.huffingtonpost.com/ari-neeman/health-care-reform-and-th_b_206492.htmlhttp://digg.com/political_opinion/Ari_Ne_eman_Health_Care_Reform_and_the_Disability_Community
Ari Ne'eman writes:
"As we speak, Congress is deliberating on vast and important changes to the system of health care in the United States. This issue is one of crucial importance to all Americans, but of particular interest to those Americans who interact with public health insurance more than almost any other group -- people with disabilities."
Among the topics addressed are:
1. Long Term Services and Supports (LTSS)
2. Health Care Disparities for People with Disabilities
3. Insurance Discrimination
4. Stop discrimination in the provision of care
To read more click on the link above.
Friday, May 22, 2009
Tuesday, May 19, 2009
Restraint Death Ruled a Homicide: Teacher Now Teaching in Loudoun County, VA
Restraint Death Ruled a Homicide: Teacher Now Teaching in Loudoun County, Virginia
The House Committee on Education and Labor held a full hearing this morning on Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools.
http://edlabor.house.gov/hearings/2009/05/examining-the-abusive-and-dead.shtml
One of the witnesses, Toni Price, testified about the death of Cedric Napoleon, who was a foster child in her care at the time he was killed by improper use of restraint.
According to Price’s testimony, and verified by Gregory D. Kutz, Managing Director, Forensic Audits and Special Investigations U.S. Government Accountability Office Washington, D.C., the death, which occurred in Texas in 2002, was ruled a homicide.
The grand jury did not indict the teacher.
The student is said to have been restrained because “he would not stay seated.”
The teacher now teaches in a public high school in Loudoun County, VA. The teacher is licensed to instruct children with disabilities.
According to Gregory Kutz, The Loudoun County schools were informed about this last Friday, May 15.
It is not known whether VDOE was made aware of the teacher’s homicidal act in Texas at the time of hiring.
Toni Price’s testimony can be found here:
http://edlabor.house.gov/documents/111/pdf/testimony/20090519CedricPriceTestimony.pdf Greg
Kutz’s testimony can be found here:
http://edlabor.house.gov/documents/111/pdf/testimony/20090519GregKutzTestimony.pdf An
An article published at the time of Cedric’s death appears here:
http://www.caica.org/NEWS%20DEATHS%20Cedric.htm
To leave comments at the Committee on Education and Labor's blog, go here:
http://edlabor.house.gov/blog/2009/05/news-of-the-day-gao-schools-re.shtml
The House Committee on Education and Labor held a full hearing this morning on Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools.
http://edlabor.house.gov/hearings/2009/05/examining-the-abusive-and-dead.shtml
One of the witnesses, Toni Price, testified about the death of Cedric Napoleon, who was a foster child in her care at the time he was killed by improper use of restraint.
According to Price’s testimony, and verified by Gregory D. Kutz, Managing Director, Forensic Audits and Special Investigations U.S. Government Accountability Office Washington, D.C., the death, which occurred in Texas in 2002, was ruled a homicide.
The grand jury did not indict the teacher.
The student is said to have been restrained because “he would not stay seated.”
The teacher now teaches in a public high school in Loudoun County, VA. The teacher is licensed to instruct children with disabilities.
According to Gregory Kutz, The Loudoun County schools were informed about this last Friday, May 15.
It is not known whether VDOE was made aware of the teacher’s homicidal act in Texas at the time of hiring.
Toni Price’s testimony can be found here:
http://edlabor.house.gov/documents/111/pdf/testimony/20090519CedricPriceTestimony.pdf Greg
Kutz’s testimony can be found here:
http://edlabor.house.gov/documents/111/pdf/testimony/20090519GregKutzTestimony.pdf An
An article published at the time of Cedric’s death appears here:
http://www.caica.org/NEWS%20DEATHS%20Cedric.htm
To leave comments at the Committee on Education and Labor's blog, go here:
http://edlabor.house.gov/blog/2009/05/news-of-the-day-gao-schools-re.shtml
Monday, May 18, 2009
ASAN President Ari Ne'eman featured in Newsweek
Erasing Autism
Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?
By Claudia Kalb NEWSWEEKPublished May 16, 2009 From the magazine issue dated May 25, 2009
A few lines from the article:
--
Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir unrest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective."
--
"We're having a national conversation about autism without the voices of people who should be at the center of that conversation."
The May 25 2009 issue is on newsstands now. Read more at:
http://www.newsweek.com/id/197813
Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?
By Claudia Kalb NEWSWEEKPublished May 16, 2009 From the magazine issue dated May 25, 2009
A few lines from the article:
--
Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir unrest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective."
--
"We're having a national conversation about autism without the voices of people who should be at the center of that conversation."
The May 25 2009 issue is on newsstands now. Read more at:
http://www.newsweek.com/id/197813
Wednesday, May 13, 2009
ASAN-VA recommendations for proposed revisions to Regulations Governing Special Education Programs for Children With Disabilities in Virginia
These comments were sent to the Virginia Regulatory Town Hall/Virginia Department of Education, after approval by ASAN's Board of Directors.
--
The Autistic Self Advocacy Network, the leading organization run by and for autistic people rather than parents or providers, recommends the following:
The developmentally delayed category must conform, at a minimum, to the age range of three through nine, as detailed in 34 CFR Part 300.8(b). Many children will not be identified by the age of 5; additional time will ensure that children are correctly identified and avoid miscategorization, which can cause severe educational delays. We recommend keeping the current Virginia definition of developmental delay intact, with a definition of 2-5 for preschoolers and 6-9 for elementary-aged children. All language in the proposed regulations that restricts a child’s access to FAPE based on “age eligibility” should be removed.
Expand the definition of autism under 34 CFR 300.8(c)(1)(i) so that the full autism spectrum ranging from what is often called “classic autism,” Asperger Syndrome, PDD-NOS, Rett Syndrome, and Childhood Disintegrative Disorder are included. This will underscore that appropriate services should be provided to all children on the autism spectrum, and also avoid the pitfalls of mislabeling or denial of eligibility for FAPE.
Retain the specific learning disability of dyslexia in the form found in 34 CFR 300.8(10)(i). The proposed revision of the definition of dyslexia is too narrow and by its focus on phonological component of language disregards other components of dyslexia and may result in the denial of appropriate services.
Interpreting services are beneficial for children with disabilities other than deaf and hard-of-hearing. Children with Down Syndrome, apraxia, autism, and other disabilities can benefit from interpreting services. Eliminate disability-specific language so that a broad range of children who need these services can be included.
Retain the child study committee. Elimination of the child study committee may result in missed opportunities for the identification of children with disabilities, which will adversely affect subsequent eligibility for services at an appropriate age. This could set a child up for long-term difficulties in the school setting.
Retain all parental involvement as defined in the current special education regulations, including participation in Functional Behavioral Assessment, parental consent for the termination of services, and involvement in, determination of members of, and notification of changes to the IEP. Parents must also retain all rights outlined in 34 CFR 300.530(e)(1), (2) and (3): Discipline Procedures, in order to ensure that all pertinent information is received and considered, regarding a manifestation determination of a child’s disability.
Address disproportionality concerns by implementing Early Intervening Services found in 34 CFR Part 300.226: “An LEA may not use more than 15 percent of the amount the LEA receives under Part B of the Act for any fiscal year….to develop and implement coordinated, early intervening services…”
Work to address underdiagnosis of the autism spectrum in rural, minority and low-income communities by dedicating funding towards training and other identification measures through the state Child Find infrastructure.
--
The Autistic Self Advocacy Network, the leading organization run by and for autistic people rather than parents or providers, recommends the following:
The developmentally delayed category must conform, at a minimum, to the age range of three through nine, as detailed in 34 CFR Part 300.8(b). Many children will not be identified by the age of 5; additional time will ensure that children are correctly identified and avoid miscategorization, which can cause severe educational delays. We recommend keeping the current Virginia definition of developmental delay intact, with a definition of 2-5 for preschoolers and 6-9 for elementary-aged children. All language in the proposed regulations that restricts a child’s access to FAPE based on “age eligibility” should be removed.
Expand the definition of autism under 34 CFR 300.8(c)(1)(i) so that the full autism spectrum ranging from what is often called “classic autism,” Asperger Syndrome, PDD-NOS, Rett Syndrome, and Childhood Disintegrative Disorder are included. This will underscore that appropriate services should be provided to all children on the autism spectrum, and also avoid the pitfalls of mislabeling or denial of eligibility for FAPE.
Retain the specific learning disability of dyslexia in the form found in 34 CFR 300.8(10)(i). The proposed revision of the definition of dyslexia is too narrow and by its focus on phonological component of language disregards other components of dyslexia and may result in the denial of appropriate services.
Interpreting services are beneficial for children with disabilities other than deaf and hard-of-hearing. Children with Down Syndrome, apraxia, autism, and other disabilities can benefit from interpreting services. Eliminate disability-specific language so that a broad range of children who need these services can be included.
Retain the child study committee. Elimination of the child study committee may result in missed opportunities for the identification of children with disabilities, which will adversely affect subsequent eligibility for services at an appropriate age. This could set a child up for long-term difficulties in the school setting.
Retain all parental involvement as defined in the current special education regulations, including participation in Functional Behavioral Assessment, parental consent for the termination of services, and involvement in, determination of members of, and notification of changes to the IEP. Parents must also retain all rights outlined in 34 CFR 300.530(e)(1), (2) and (3): Discipline Procedures, in order to ensure that all pertinent information is received and considered, regarding a manifestation determination of a child’s disability.
Address disproportionality concerns by implementing Early Intervening Services found in 34 CFR Part 300.226: “An LEA may not use more than 15 percent of the amount the LEA receives under Part B of the Act for any fiscal year….to develop and implement coordinated, early intervening services…”
Work to address underdiagnosis of the autism spectrum in rural, minority and low-income communities by dedicating funding towards training and other identification measures through the state Child Find infrastructure.
Friday, May 8, 2009
NFB Disability Law Symposium Keynote Address by ASAN President Ari Ne'eman
On Friday, April 17th, 2009, I delivered the following comments to the National Federation of the Blind's Disability Law Symposium. A recording of the speech is available here on mp3 and a link to the rest of the symposium materials can be found at: http://www.nfb.org/nfb/Law_Symposium.asp
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, women’s rights, disability rights, immigrant rights, GLBT 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. And 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. This holds us back.
We go out to the world and we tell them in so 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 where 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 into 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. Our 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 of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than 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 so many senses, still is perceived – as a problem that should be solved by charity and 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 far as rights crusaders were concerned – 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 began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious 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 lied not with G-d or with medical defects but with a society that was 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.
In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.
The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones 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 the 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. To quote Harvard’s Alan Dershowitz, rights come 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 having been deprived something else that should 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 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw 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 serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one 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 a media and, as a result, a general public that has 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 and 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 was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.
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 terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon 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 because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees 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 who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so 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, by way of example, of an experience my group, the Autistic Self Advocacy Network, 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 e-mails, 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 were consumer-controlled disability rights organizations, 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.
And 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, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived 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. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. 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 Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB 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 one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. 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 into 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, were 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 the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to 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 has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobeus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do 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 restored agency to our community is one way for us to take back our voice.
Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or 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 upon us an obscenity. This obscenity nevertheless has use in that 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.” The same could be said about many similar groups that speak about us, without us in many disability communities.
Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. 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 and their co-workers 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 in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.
I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation 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 time and I look forward to working with all of you to bring this hope into reality.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
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, women’s rights, disability rights, immigrant rights, GLBT 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. And 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. This holds us back.
We go out to the world and we tell them in so 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 where 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 into 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. Our 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 of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than 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 so many senses, still is perceived – as a problem that should be solved by charity and 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 far as rights crusaders were concerned – 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 began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious 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 lied not with G-d or with medical defects but with a society that was 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.
In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.
The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones 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 the 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. To quote Harvard’s Alan Dershowitz, rights come 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 having been deprived something else that should 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 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw 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 serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one 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 a media and, as a result, a general public that has 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 and 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 was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.
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 terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon 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 because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees 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 who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so 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, by way of example, of an experience my group, the Autistic Self Advocacy Network, 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 e-mails, 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 were consumer-controlled disability rights organizations, 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.
And 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, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived 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. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. 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 Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB 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 one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. 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 into 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, were 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 the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to 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 has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobeus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do 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 restored agency to our community is one way for us to take back our voice.
Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or 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 upon us an obscenity. This obscenity nevertheless has use in that 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.” The same could be said about many similar groups that speak about us, without us in many disability communities.
Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. 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 and their co-workers 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 in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.
I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation 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 time and I look forward to working with all of you to bring this hope into reality.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
Testimony at IACC meeting May 4, 2009
Paula C. Durbin-Westby
May 4, 2009
[Sentences in square brackets are for clarification purposes and were not spoken.]
Thank you for the opportunity to speak today.
You may now have two people who are interested in summarizing the 120 scientific studies mentioned earlier. [in reference to only 6 IACC members submitting comments on hundreds of scientific studies up for review].
Augmentative and Alternative Communication:
It is gratifying to see that the IACC is addressing the critical issue of Augmentative and Alternative Communication.
Now it is time to allocate funding to AAC research. Including a presentation about AAC is an important but preliminary step.
Since communication difficulties are experienced by many people on the autism spectrum, funding research in this area should be a high priority. Advances in communication technology, and the development of AAC options that are affordable, will have a practical application to the lives of people on the autism spectrum, throughout the entire lifespan.
Because of the extreme disparity between services/quality of life funding and the funding of basic research, funding for AAC should be diverted from the millions of dollars allocated to genetic and treatment research and NOT drawn from the already minimal funding for service-related research.
Community-Based Participatory Research:
I recommend using a community-based participatory research model for AAC and other research. Rather than being “grown-up children” as far as research is concerned, autistic adults must be included as collaborators in research, for both practical and ethical reasons. The community-based participatory research paradigm is one model; others may be developed and utilized. [“grown-up children” in reference to comment made by Susan Swedo about the role of autistic adults in research studies.]
One likely outcome of including people on the autism spectrum as collaborators and co-researchers is that the research will be made more relevant to the lives of people on the autism spectrum, including not only adults but children as well.
Just one example from a current research area is that of eye contact research. It has been recently discovered that autistic children look at mouths more than at eyes. Although this is an exciting new discovery for researchers and others, it is not necessarily news to people on the autism spectrum, who are often aware of the reasons and motivation for our own actions.
In addition, studies have already been undertaken that show that typically-developing children also use multi-modal perception to process their experiences.
It has been suggested that some sort of retraining could be done to direct children to not look at mouths but at eyes. The theory is that by looking at mouths children, and presumably adults who do not make much eye contact, are missing important social cues… and that we don’t make use of our peripheral vision.
While it is critical to understand the underlying mechanisms for human communications and processes, the design and application of scientific theories, especially when young children are involved, should have participation, input, and oversight from people on the autism spectrum.
Researchers should take into consideration the numerous self-reports of people on the autism spectrum about the necessity of looking at people’s mouths in order to compensate for auditory processing difficulties, among other reasons. Including co-researchers who are on the autism spectrum can positively inform research so that time and taxpayer money are not wasted and so that studies involving autistic children as subjects do not cause additional difficulties when children are retrained to look away from mouths and possibly lose a significant visual method of accessing receptive communication. Audio-visual synchronies are important not just because they are early indicators of autism but because they are a critical component in how we make sense of communication inputs.
Language Use:
Once again, a chronic or fatal disease model or metaphor is not appropriate for autism. Autism is not fatal like cancer, and, as an autistic person with kidney disease, I can tell you that they are not comparable. The IACC must promote appropriate language to reduce myth-making and stigma. [reference to comments comparing autism to cancer and kidney disease.]
Autistic self-advocate organization as public member:
The time has come for the Interagency Autism Coordinating Committee to include representation from autistic self-advocacy organizations such as the Autistic Self Advocacy Network, which has had a representative at all but one of the IACCC meetings since November 2007. Autistic self-advocacy organizations are an increasingly recognized stakeholder in autism policymaking and should not be purposely excluded from the Committee that makes decisions about federal funding for research. The public law that created the current IACC has been in place since 2006/2007. The newly founded Autism Science Foundation has is represented, if not officially [by Alison Singer, president of that organization] but still no representative from a major autistic self-advocacy organization has been named to the committee. Adding a public member from an autistic self-advocate organization will begin to redress the existing imbalance in parity, and add a much-needed dimension of focus on research and policy that will benefit people on the autism spectrum across our lifespans.
This will enable research into AAC, eye contact, and other areas, to move from the “promising practice” realm to a best-practice reality.
REFERENCES:
1. R000239930- Benefits of Averting Gaze and Cues to Comprehension. Doherty-Sneddon, Gwyneth.
http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/Plain_English_Summaries/knowledge_communication_learning/knowledge/index405.aspx?ComponentId=9673&SourcePageId=11764
2. Read My Lips: Using Multiple Senses in Speech Perception. Rosenblum, Lawrence D. Current Directions in Psychological Science
http://www.eurekalert.org/pub_releases/2009-02/afps-rml021109.php
3. YouTube video on multi-modal processing:
http://www.youtube.com/watch?v=jtsfidRq2tw
Tuesday, May 5, 2009
Listen to the Real Experts
Here is a link to an article on ASAN's Public Service Announcement produced with the Dan Marino Foundation.
The article is by columnist Valerie Brew-Parrish.
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