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KATHY FAHEY: Good afternoon, everyone. Thank you so much for coming. I'm Kathy Fahey. I'm the director of Student Disability Services. And I'm so pleased that we have Ari Ne'eman today on campus to talk with us about neurodiversity and autism.
We've had a-- our neurodiversity working group has been working on our initiative of understanding neurodiversity and building a more inclusive campus, for the past year or so. And we've had a couple of experts on autism come and speak, but it was really important to us to have not just experts but people with autism who are speaking about the empowerment and advocacy of the neurodiversity movement. So that's why we're so pleased to have Mr. Ne'eman here today.
This event as been sponsored by the College of Agriculture and Life Sciences, by Residential Programs and Student Disability Services, and [? ODAI, ?] the Office of Diversity and Academic Initiatives. So, with all that support, we were able to bring Mr. Ne'eman here today. And so thank you so much for coming. Kathleen Long, a professor in Romance Studies, a professor of French, is going to do the introduction. So, thank you, Kathy. Also a member of our neurodiversity working group.
KATHLEEN LONG: So, as the proud mother of a young man on the spectrum, a wonderful young man, I'm really honored to welcome Ari Ne'eman to our campus. He is probably one of the people I most admire, in this regard, since he's been a tireless advocate for people on the spectrum. He's the president of the Autism Self Advocacy Network. He's a member of the President's Council on disability. And I'm sorry, I get nervous, so I have to look at notes.
He served a leading role on that council, particularly in terms of advocacy for people on the spectrum. He's also served on the Interagency Autism Coordinating Committee, which tries to coordinate services for people on the spectrum. And he has represented autistic adults on the task force that reviews state services in New Jersey.
I also wanted to add, he was the first Patricia Morrissey Disability Policy Fellow of the Institute for Educational Leadership. So not only does he have political experience, but he has educational experience. So we need to listen to him particularly carefully.
And I'm sorry, I feel like I'm just scratching the surface, here, but I feel like I want to get to Mr. Ne'eman's talk. But I did want to say that part of why I'm very moved to do this is, my son would not have thrived in school, and I think his experience was very similar to Mr. Ne'eman's in the K-12 system. He would not have thrived in school without teachers and school psychologists who advocated for him and supported him.
And so the work that Mr. Ne'eman's doing is really critical for people on the spectrum, to help them thrive and to help them be an important part of our society. So, without further ado, Mr. Ne'eman.
[APPLAUSE]
ARI NE'EMAN: Well, thank you so much for that stirring introduction and for having me here at Cornell University. I'd like to begin, if I may, oh, about 97 years ago, in 1917. If you were a moviegoer in 1917, the odds were reasonably good that you had the chance to see The Black Stork, subtitled "A Vivid Pictorial Drama about Why Dr. Henry J. Haiselden Refuses to Operate to Save the Lives of Defective Newborns." The Black Stork, later rereleased in the 1940s under the title Are You Fit to Marry?, was a propaganda piece for the American eugenics movement. For the first half of the
20th century, the eugenics movement-- a movement that sought to breed better human beings, in much the same way that one would seek to breed better horses or better dogs-- held tremendous sway in America. And we remember many aspects of the eugenics movement-- the tens of thousands of Americans who were involuntarily sterilized, as a result of eugenics, the horrific rhetoric and racism of eugenics, the role that eugenics played across the ocean, and the horror that was soon to come in Germany. But other aspects of eugenics, we don't remember, most notably the role that responding to the eugenics movement played in establishing today's disability rights movement.
If you are such a moviegoer in 1917, and if you did pay the $0.15 or so-- it might have been $0.05-- to go see The Black Stork, you would have seen the movie open to a picture of a handsome young physician, Dr. Harry Haiselden, walking by a boy's window. And inside the window, you would see this sickly, very obviously defective young boy who had a physical disability. And he was looking out the window, sad and forlorn and isolated and obviously presented as pathetic as possible in every possible way.
And Harry Haiselden, the good doctor, would turn to the camera and say to you, something is wrong here, but the child is not to blame. It's his parents. And then we would leap into the mainstream of our story.
Because The Black Stork began with a mother having just had a newborn baby who was clearly disabled and who required an operation to save its life. And this mother is being counseled by two doctors. On one side, Dr. Henry J. Haiselden, the hero of our story, who was saying to her, well, truthfully it's a kindness to let a child such as this die. You know, it would not be a kindness to-- let's just move this microphone down a little.
It would not be a kindness to have a child like this live. There's really no point. You should just let the child die.
And on the other side is presented another physician, who is presented as the villain in The Black Stork, saying, if you let me operate, I can save your child's life. And that will be as a tribute to me. And that's why you should let me operate, because I am such a good doctor that I can save the child's life, and, you know, that will really feed my ego.
And the mother, out of perhaps a natural maternal instinct, is about to go with the second doctor, when all of a sudden she has a vision of the future. And her child grows to adulthood, and he's sickly and sad and pathetic. He tries to join the military, and the military won't take him. And that's supposed to be the ultimate sign, by the way, of how pointless his life is. "Even Uncle Sam won't take him," says the movie.
Until, at last, he's tired of all of this, and he goes and he buys a gun. And he tracks down the doctor that operated to save his life and shouts out, why did you suffer me to live? And shoots him dead.
And then, of course, the vision of the future ends, and we're returned to the hospital room, and the mother realizes, of course we should side with Dr. Harry J. Haiselden and let the child die. And the child is then delivered into the arms of a waiting, spectral, Jesus-like figure, before the movie ends with a written editorial for national eugenics laws.
What you may not be aware of, but what moviegoers in 1917 were in fact aware of, is that The Black Stork was based on real events. Harry J. Haiselden was an actual doctor. He played himself.
Harry J. Haiselden did, in fact, in a Chicago hospital, deliver a child with a disability who needed an operation to save his life. And Harry J. Haiselden did, in fact, convince the mother to abandon the operation. But Haiselden was very adamant, as a proponent of eugenics, that it wasn't enough simply to let the child die but that the public needed to be informed that such children should never be allowed to live, should never be allowed to grow into adulthood.
And so he called the media. And Haiselden was sort of the Jack Kevorkian of his time-- a hero to his proponents, a villain to his detractors, but a very popular figure because of the sway that eugenics held in early 20th century America. Very shortly after The Black Stork, the Supreme Court ruled in Buck v. Bell that three generations of imbeciles are sufficient and allowed states to involuntarily sterilize people with disabilities or people who were perceived to have disabilities.
And we understand this history of involuntary sterilization. And, in part, we've started to acknowledge it. Some states have passed laws apologizing for their sterilization programs. Some states have even engaged in reparations.
But what we don't understand is, other aspects of disability service provision also date from the eugenics movement. Because eugenics was not just about preventing people with disabilities from having children. It was also about isolating them from the population.
Through the early half of the 20th century, the rate of institutionalization for Americans with disabilities skyrocketed, until, at one point in the mid 20th century, 3 in every 1,000 Americans was in a mental institution. And the diagnoses that these people were given were generally things like "feeblemindedness," clinical terms like "imbecile," "moron," or "idiot." Institutions differentiated between high-grade and low-grade residents. This is the origin of the terms "high-" and "low-functioning," which are still used in a lot of-- a disturbing amount of-- circles today.
And the process of institutionalization was done, very explicitly, to protect society-- not even from the ostensible good of disabled people. Today, we recognize that institutionalization does nobody any good, that nobody should be in an institution. But there was an interim period, in the '60s, '70s, and '80s, when that was not recognized and when some people argued for keeping institutions open for the good of the residents. When institutions were first created, there was none of that. It was very explicit. This is to remove such people from society.
The head of the Missouri Medical Association, in 1918, delivered, in his presidential address, remarks that "should we succeed in ensuring that every feebleminded person is placed within an institution, we will drastically reduce our criminal class by 75%, be able to reduce the number of prostitutes by an equally large amount, and rid ourselves of any number of other unsocial and unsavory characters such as the hobos, the IWWs, and many others." The IWWs, for those of you who are not familiar, were a labor union.
So, at this point, in early 20th century American life, eugenics was very explicitly an institutionalization was very explicitly a project whose sole purpose was to remove those who were deemed socially undesirable from society. At the same time that this was going on, some of those who were deemed socially undesirable decided that they were unhappy with the quality of representation about themselves that was being given to the public. How many of you have heard of Alexander Graham Bell? Guy who Invented the telephone, right?
So, what many of you may or may not be familiar with was, Alexander Graham Bell was also a prominent American eugenicist. Bell believed very ardently in the importance of preventing deaf people from learning sign language and from marrying each other, for fear that they would breed and create a, in his words, "different and defective" version of the human race. And, in response to Bell's advocacy of eugenics, and in response to his advocacy to try and prevent deaf children from learning sign language, the National Association of the Deaf-- which had previously been founded, in 1880, and represented the first instance of a national organization run by and for people with disabilities-- began advocacy to respond to the eugenics movement as applied to the deaf community and respond to Bell's efforts to attempt to restrict their rights and to attempt to restrict opportunities to learn their language.
And so what we're seeing is, at the same time as the dominant narrative about disability was one of removing people from society, was one of dependence, was one of burden, we're also seeing for the first time disabled people starting to talk about their disability themselves and starting to define themselves as part of a collective group that could advocate for their human and civil rights.
In the 1930s and as part of the New Deal that Franklin Delano Roosevelt promised America, the Works Progress Administration was created with an eye towards putting Americans back to work. But, despite the fact that the President of the United States himself had a physical disability, disabled Americans were largely excluded from the Works Progress Administration and from similar employment efforts. In response to this, in New York City a group called the League of the Physically Handicapped held the first disability-rights sit-in, at the Works Progress Administration in New York City, calling for the inclusion of disabled adults-- at the time, just adults with physical disabilities-- in the Works Progress Administration's employment and hiring efforts.
This is sort of a promo version of ADAPT, at a very early stage in American disability history, where there was not really any kind of precedent for this kind of activity. And what you saw was the League of the Physically Handicapped formed, held their sit-in, acquired some concessions from the Works Progress Administration, and then would largely dissipate in later years and did not persist but formed a model that later, in future decades, other disabled people would copy with an eye towards creating more opportunities through advocacy by and for disabled people. So, even in this very early period where disability was viewed as something to be stigmatized, as something to be ashamed of, as something to hide and excise from the population, you still had people with disabilities beginning the process of advocating for us, by us, and advocating for ourselves.
In the intellectual- and developmental-disability community, where autism was a part of-- and it wasn't called by those terms, then. It was called by terms like "feeblemindedness" and so on and such forth-- we are still seeing a very different state of affairs, towards the mid 20th century. In the 1940s, still in the throes of the American eugenics movement, specifically in 1942 the American Journal of Psychiatry held a debate, in its pages, between Leo Kanner and Foster Kennedy, an American neurologist. Leo Kanner was a Baltimore child psychologist who, a year later, would publish the first paper documenting the autism spectrum, but that year he was arguing one side of a quite controversial topic for the time-- should disabled people be subject to government-sponsored euthanasia?
Foster Kennedy argued the affirmative. Leo Kanner argued the negative. And Foster Kennedy, in his arguments, begins by saying, first I should be very clear. We are not applying this to all people with disabilities. Some disabled people, "some feebleminded people" was the phrase that he used, serve valuable societal functions. Who would perform our menial labor, if not for the mildly, high-grade feebleminded?
But to imply that we should allow the low-grade feebleminded to continue to live, to imply that we should not engage in a sensible policy of euthanasia toward such individuals, is simple morbid sentimentality. And Leo Kanner, responding, said "shall we psychiatrists take our cue from the Nazi Gestapo?" He argued the opposite. He said, no, of course, we shouldn't do this.
And Leo Kanner, as a Jewish refugee from Vienna who had left in the 1930s, this was very strong language for him, and argued passionately that such a policy of euthanasia was deeply, deeply inappropriate. Of course, it's worth noting that both Kanner and Kennedy both agreed that involuntary sterilization probably made sense for this population.
What's interesting about this is not just that, in the midst of World War II, the premier journal of the American Psychiatric Association would bring together such a debate but also that, at the end of the discussion, at the end of the discussion, the journal published an unsigned editorial implying that it carried the position of the association, stating that, while both sides had made some good points, they were forced to agree, at the end of the day, with Kennedy rather than Kanner and that what would differentiate the American policy of euthanasia from the German policy of euthanasia is that we would first pass rigorous procedural protections, to ensure that it was not abused.
This is the state of public attitudes about disability in the mid 20th century. And one year after that debate, in 1943, Leo Kanner would publish the first paper describing the autism spectrum and, along with Hans Asperger doing similar work in Vienna-- who published a year later but was less well known, because, in 1944, German was not the world's most popular international language, for reasons that are only too understandable-- but, along with Hans Asperger, Leo Kanner would really begin modern autism history.
When Kanner published his paper describing autism, he at first thought he was describing a relatively rare variant of "childhood schizophrenia"-- was the description that he utilized. And, while he became very active in talking about it, lecturing about it, and doing work about it, very quickly-- by the time the 1950s rolled around-- another clinician would become the dominant voice in the autism world. And his name was Bruno Bettelheim.
Bettelheim popularized the idea, a horrific libel, that autism was caused by poor parenting. In his refrigerator mother theory-- that was what he called it-- he said that autistic children are withdrawn because their mothers are cold to them. And, as evidence of this, he cited the fact that he very frequently observed mothers of autistic children not engaging in affectionate behavior, and touching their children, hugging their children, and being as physically close to their children as he saw mothers of nonautistic children doing. And, of course, today we realize that, in large part, the reason of that could very well be that we, as autistic people, have sensory sensitivities. We very frequently don't like being hugged or touched, at least not without notice or not when we don't want to be.
And so, in fact, those mothers were being more understanding of their child's wishes and more understanding of their children than Bettelheim ever was. But, because of Bettelheim's theory-- and Bettelheim was wildly popular. This is a man who appeared on all kinds of daytime talk shows, was consulted as a major figure in childhood psychiatry-- for the first several decades of the autism conversation in the United States, the dominant perspective was that, if you had an autistic child, it was your fault. You were a refrigerator mother.
And this did a couple of things that I think are very notable and really sort of stick with us, even in the long aftermath, long after the refrigerator mother theory was disproved. First, it sent a very clear message, that if you were seeking a diagnosis for your child, you should probably avoid autism, because, rather than getting support, you would get blame. And so, it depressed incidence statistics at the very beginning of American inquiry into the autism spectrum.
But, second, it created an adversarial relationship between parents and clinicians, because clinicians were arguing that parents were at fault for autism. And so early autism advocacy, and the first formation of parent groups in the autism world, were focused primarily on questions of causation. How can we figure out what causes autism, so that we can correspondingly figure out how we can prove to the public that Bettelheim is wrong, that it isn't us?
So what you have here is a situation where not only do autism parent groups very much not subscribe to the dominant perspective or the credibility of clinicians and researchers in the autism world, for understandable reasons, but are also very much focused on causation and also separated from the broader intellectual-disability community, at a time that that is coming together also for the first time. Outside of the autism world, parent groups were also forming.
The deinstitutionalization movement first began to garner speed in the postwar period. Many conscientious objectors in World War II and the Korean War had been put to work in institutions and did not like what they found there. And so, for the very first time, mainstream America was being exposed to the reality of life in institutional settings. And so deinstitutionalization began to catch on, as some of these conscientious objectors wrote about their experiences and as the civil rights movements and advances in rehabilitation technology, primarily developed for disabled veterans coming home from the wars, began to become more common.
And so, very rapidly, in the '60s and '70s you start to see the formation of both family and even some professional advocacy groups that are focused on moving people with disabilities, particularly what was then called "mental retardation" and what is now called "intellectual disability" out of institutional settings and into the community. You see a number of really important exposés during this period. Burton Blatt-- there's now an Institute named after him, in Syracuse-- published a photo essay called "Christmas in Purgatory," describing conditions in institutions throughout the Northeast. Geraldo Rivera, who at one point was a very serious journalist-- shockingly-- [LAUGH] published the groundbreaking Willowbrook expose on his television show, which led to widespread interest in deinstitutionalization.
And you started to see the formation of parent organizations focused on, again, what was then called "mental retardation" engage in advocacy, not so much around causation, although that was a part of it at the beginning, but more around services. How do we, as we get people out of institutions, support people to live in the community? How do we help people support people to move into public schools? How do we support people to potentially move into employment? How do we support people to get high-quality health care?
And, because they didn't have to deal with the attack that Bettelheim had forced the autism parent community to have to deal with, their emphasis on causation very quickly shifted to focusing almost entirely on civil rights and almost entirely on accessing services. A lot of things came of this. The late 1960s and early 1970s right-to-public-education cases established that the Equal Protection clause of the Constitution required states to provide people with disabilities, students with disabilities, public education. In response to that, Congress passed the Education for All Handicapped Children Act of 1975, working in tandem with the physical-disability community and people like Ed Roberts, Judy Heumann, Bob Williams, and others, who were in some ways the legacy of the League of the Physically Handicapped, picked up many decades later.
The Rehabilitation Act was passed in 1973, requiring, in Section 504 of the Rehabilitation Act, that any entity that received federal funds would have to be accessible and make reasonable accommodations for people with disabilities. So what you see is, at the same time that the autism parent community was focused-- again, quite understandably-- on disproving Bruno Bettelheim and on fighting the causation wars, you start to see, for the first time, a separate advocacy movement that has significant parent involvement but also a growing amount of involvement from other groups of people with disabilities, primarily, at the time, people with physical disabilities. People with intellectual and developmental disabilities would get involved in organized advocacy really only a decade later, in the 1980s.
But you see for the first time an advocacy movement that is rights-focused, that is focused on services, and that is very separate and distinct from what is going on in the autism world. Two major figures define the conversation on autism research and autism service provision, from the 1970s onward-- Ivar Lovaas, and Bernie Rimland. And Rimland, Rimland, who was one of the founders of the Autism Society of America, has a very deserved claim to fame.
Bernie Rimland helped to disprove the refrigerator mother theory. And, for that, he was lionized, quite understandably, by many of the autism parent groups. What Rimland also did-- and this is where we get into the more unfortunate part of his history-- is he helped to popularize the idea that autism was caused by vaccines, by immunization. And this is an idea that, despite a wealth of scientific evidence to the contrary, continues to persist today.
Rimland popularized this, in part because his Autism Research Institute was establishing a fairly robust system of alternative medicine that had become very profitable for them, but also most likely because he sincerely believed in the idea. And, at the time, the wealth of scientific evidence against it had not been accumulated. But this is something that was very popular in autism parent circles, when it first began to be popularized, during this time, in part because it turned the narrative about causation on its head. Whereas, in the '50s, '60s, and '70s, parents had been fighting to try and prove that they did not cause autism, against the false accusations of clinicians, the vaccine causation theory let them now blame clinicians for causing autism and form an advocacy movement based on going after the same people that had gone after them.
Rimland also was a prominent opponent of deinstitutionalization. In some of his essays in the 1990s, he accused the supporters of community integration of being zealots engaged in an unfortunate and "delusional," was the phrase he used, effort to try and convince you-- in this case, he's referring to parents-- to try and convince you of subscribing to the dangerous delusion that your children are not really handicapped. And so Rimland, because of his prominence in the autism world, established a preference for segregated and institutional settings, at a time when the rest of the developmental- and intellectual-disability world was really trying to move against those kinds of models and to move to models that focused on supporting people to live into the community.
Rimland's role in the autism world was really one of the defining ones, when it came to adult services and theories about causation. But if you want to look at early childhood education and autism, you want to look at Ivar Lovaas. In the 1960s and '70s, Ivar Lovaas had two major projects at UCLA. One was called the UCLA Feminine Boys Project, where he collaborated with George Rekers-- another child psychologist, using the phrase in its broadest possible interpretation. And the Feminine Boys Project was about using behavioral intervention to recover, quote-unquote, "at-risk children from homosexuality."
Lovaas also had another project, in which he aimed to do much the same thing for autistic children. And, of course, one of his projects is very much viewed as disreputable today, the other one not so much. But Lovaas set as its goal, as his goal, attempting to make autistic children appear as "indistinguishable from their peers." That's a direct quote. The goal of intervention should be indistinguishability from peers.
How many of you wake up in the morning and ask yourself, how can I be more indistinguishable today?
[LAUGHTER]
It's not what we would consider a person-centered goal. It's not a goal that most people aspire to. And it's not a goal that is really consistent with the actual aspirations of autistic people and our families. People talk about and think about, how can I learn to communicate better or support my family member to communicate better? Or how can I make it more likely that my family member will have a job or be able to live more independently or have friends or get married or go to school, or any number of other things.
But indistinguishability is not really a goal. That wasn't Lovaas's perspective. And, in support of that goal, Lovaas was willing to use any number of different means.
Early behavioral intervention included a number of means that were focused on using pain as a means of changing behavior. Something called "aversives," which could include everything from electric shock-- and that featured in some of Lovaas's early experiments-- to ammonia spray, pinching, slapping, any number of other things. There's a Life magazine article about Lovaas, from this period, called "Screams, Slaps, and Love," which sort of described his early autism experiments.
But Lovaas's work was very popular among many early parent organizations in the autism world, because it was one of the first efforts that was predicated on the idea that we were going to be doing something other than pseudo-Freudian psychiatric interventions based on the refrigerator mother theory. And so you saw, in part because of Lovaas, catch on in the autism parent world this idea that not only was autism something that was caused-- in many circles, it was believed, by vaccinations. Not only is autism something that is qualitatively different from other disabilities, but also that the goal of autism intervention should be to try and take the autistic child and make them look and appear as nonautistic as possible, to make them look and appear indistinguishable from their peers.
And that's where we come to the 1990s, with this legacy in the autism world, with the dominant voices and the dominant narratives coming from Rimland, when it comes to causation, and Lovaas, when it comes to early intervention. And what we end up with is a situation that many of us on the autism spectrum were not entirely happy with. Because, in the 1990s, you also start to see, for the first time, a generation of autistic people grow up that knew that they were autistic and that started to connect with each other, at first mainly on the sidelines of autism parent conferences but, with the rise of the internet, also online and eventually at our own conferences and events. And this emerging autistic community, as differentiated from the autism community that was run primarily by parents and professionals, didn't agree that we were some kind of recent epidemic. In fact, as the autistic community started to grow, we connected with other, older autistic people who had never been diagnosed in childhood.
We also didn't agree that the objective of autism intervention should be to try and make us appear and look and act as normal as possible. In fact, we looked at the broader disability world, and we noticed that not everyone was talking mainly about causation and young children. A growing number of disability rights organizations were emerging that were representing a perspective about their disabilities that was rights-focused.
Now we're several years after the Americans with Disabilities Act of 1990 was passed. And so, within that context, I think you see, within that context, what you see is something very different. You see the first emergence of groups run by and for autistic people beginning to challenge the dominant parent narrative about autism-- which itself began as a challenge to the dominant-clinician narrative, after Bettelheim. And I think that represents something that's very interesting and that really has only started to be realized to its full potential, today.
In 1993, Jim Sinclair, the person who founded the autistic self-advocacy and the neurodiversity movement, wrote an essay which was published in the Autism Network International quarterly journal. And Autism Network International was the first autistic self-advocacy group. And his essay was an open letter for parents. It was called "Don't Mourn for Us."
And in this essay Jim Sinclair stated that, "when parents say 'I wish my child was not autistic,' what you are actually saying, and what we as autistic people hear, is 'I wish I did not have this child that I have and instead had a different child, could replace this child with a different one, instead.'" What Sinclair was saying, and what became one of the foundational principles of the neurodiversity movement, was that, rather than arguing about what causeed autism-- particularly because a growing amount of evidence was showing that autism is something that's genetic and that, contrary to Kanner and Bettelheim's initial ideas, was not rapidly increasing in the population but instead represented something that had always existed. But, instead of focusing on what caused autism, or how to cure or eliminate autism, people should recognize that being autistic was a part of who we are, that the way our brains work cannot be separated from how we think about ourselves.
You might notice that, throughout this conversation, I used a phrase "autistic person" rather than "person with autism." And the reason for that, and the reason why a growing number of autistic people associated with the neurodiversity movement use that language in much the same way that the deaf and blind community uses that language, is that we don't view our autism as an appendage, as something that snuck in and attached itself to a normal person. We think that the way our brains work are inseparable from how we define ourselves and how we think about ourselves. And so we wouldn't refer to ourselves as "people with autism," an more than we would refer to ourselves as "people with American citizenship" or "people with Judaism" or "people with Christianity."
Because what this advocacy movement that was starting to emerge by and for autistic people, in the 1990s, was really all about was, for the first time, putting power in the autism community in the hands of those who were most directly affected by autism advocacy and had to live with its consequences-- autistic people. And it was about changing the focus of the autism advocacy movement, from a conversation that was rooted about how we create a world without autistic people to a conversation that was rooted in how we create a world in which autistic people are respected and enjoy equality of opportunity.
ASAN was founded a little bit more recently than that. We were founded in 2006. And our goal in founding the Autistic Self Advocacy Network was to take some of the ideas that had started to develop in the autistic community since that period in the early 1990s and to begin to have a way to articulate them to the broader public.
Some of the first work that ASAN did was to respond to ad campaigns that talked about autistic people without us.
Autism Speaks put out a very prominent fundraising video, in 2005, called "Autism Every Day." And the gist of this video was, prior to filming, they told parents, I want to make sure you don't send your child for any kind of regular therapy appointment, and you don't clean your house, and you don't do your hair, before the cameras come, for at least about a week, because we want you to look as pitiful as possible. It'll help raise money.
And in the video "Autism Every Day," one of the senior executives of Autism Speaks talked about how she had seriously considered putting her six-year-old autistic daughter, who was sitting in front of her as she was having this conversation, in the car and driving off the George Washington Bridge. But she didn't, of course, because she had a normal child, as well, and had to hold on for the sake of the normal child.
So some of our first advocacy efforts were responding and rebutting to that kind of thing. In 2007, the New York University Child Study Center put out an ad campaign called "Ransom Notes," which consisted of plastering York City with billboards and posters and magazine ads from fake ransom notes, each one claiming to be from a particular disability that had stolen a child and left God knows what in its place. The one for autism said "We'll make sure that your child never communicates or has friends as long as he lives. See what happens if you do nothing. Signed, Autism." They had one for ADHD which said "We will make your child a detriment to themself and everyone around him. Signed, ADHD."
Our point of view was, well, what happens if you're going to a job interview or an IEP meeting or any number of other things, and you know the person sitting across the table has just seen, from New York University, that you're a detriment to yourself and everyone around you? It's not consistent with how we want to talk about ourselves or the message we want to give to the public. So we mobilized about a dozen disability advocacy groups and got several thousand autistic people, and parent allies and professional allies, to call the New York University Child Study Center and managed to take down that ad campaign, which was scheduled to run for about five months, and managed to take it down instead in about two weeks.
But the goal of ASAN, and the goal from what we were doing, was always to ensure that not only did we have an opportunity to respond to the kinds of things that were being said about us, but that we also had an opportunity to set our own agenda for how we wanted public investment in autism and a national conversation on autism to go. Because we've been very explicit that our perspective is not that we should be left alone, but we want to be included in the broader disability-rights discussion about services and supports, and fighting against discrimination, and ensuring access to equality of opportunity.
Some of the ways that we've done that have included advocating for greater access to augmentative communication technology. Not all autistic people can speak like I can. A great many autistic people require access to support, in order to communicate. Unfortunately, in part because of the legacy of Lovaas, there is a perception in many circles, among parents and some professionals, that, if you provide a child with access to augmentative communication-- so, a device to type, or a picture-exchange communication system, to point to pictures of what they're interested in-- that they'll be less likely to develop speech. In fact, that's not really true. If you give somebody access to one communications system, they'll will be more likely to develop the ability to communicate through other means.
But our perspective has also always been that, since we're not trying to make people look and act and appear as nonautistic as possible, that we should be empowering people to use the communication system that works best for them. And so, regardless of whether or not it's going to help somebody gain access to speech, letting people communicate and supporting people to communicate is a positive end in and of itself. We've also been fighting some of the resurgence of institutional models, as states have made progress in closing institutions, and we now have today 13 states that have no large state-run institutions, and a growing number of other states that have eliminated institutionalization for people with intellectual and developmental disabilities altogether, some institutions have tried to rebrand themselves and claim to be community-based settings.
The state of Missouri, a few years ago, decided that they were going to close the Nevada Habilitation Center. It's in Missouri. It's called the Nevada Habilitation Center. Bear with me.
And it was a state institution, and they were going to replace it with a series of large group homes, on the grounds of the old Nevada Habilitation Center, with the same staff that had worked in the Nevada Habilitation Center-- around which they were going to place a fence and refer to it as a "gated community." By the way, the difference between this gated community and the ones you find down in Boca Raton, Florida, the Boca gated communities are to keep undesirable elements out. These are designed to keep undesirable elements in. We feel like there's a little bit of a difference.
And we were fortunately able to lobby the federal government to refuse permission to the state of Missouri to use Medicaid community-services dollars to do that. And they ended up not moving ahead with that plan. Recently-- actually, just three weeks ago-- the Centers for Medicare and Medicaid Services announced that they were going to be promulgating new rules about what could and could not be funded with Medicaid community-service dollars. And that was in part as a result of our advocacy.
But overall, our effort has been, first and foremost, to ensure that, any time that autism is being discussed, any time that autism services are being discussed, any time that autism research is being discussed, that autistic people have a seat at the table and have the opportunity to have control over our own fate. I want to close and offer the opportunity for people to ask some questions, because we've covered about 97 years very, very quickly. [LAUGH] But I do think it's very important to point out that basically everything we've been advocating, here, is not-- at least from my perspective, or from our perspective-- or shouldn't be viewed as horribly revolutionary. It's really in line with what the disability rights movement has always been about.
You know, after the Section 504 sit-in, which was a sit-in run by Ed Roberts and a number of other disability rights advocates in San Francisco, in 1977, to force the federal government to issue regulations implementing Section 504, one of the first national disability nondiscrimination laws. But, after the sit-in, which was a success for the disability community and involved sitting in the lobby of the Department of Health and Education and Welfare offices for about a month, until the department agreed to issue those regulations, Ed Robert said something that I think, is very profound. And it's something that really defines what ASAN and the neurodiversity movement and the self-advocacy movement is now trying to bring to the world of autism.
He said, all the way back in 1977, that "We have begun to build a future not just for ourselves but for all people with disabilities and for a future generation of people with disabilities who will not have to suffer the same things that we had to suffer through but that, if they do, they will be prepared to fight back." That's what neurodiversity is about. That's what ASAN and self-advocacy is about. And I look forward to chatting with all of you, as you so desire, on the topics. Thanks so much.
[APPLAUSE]
KATHY FAHEY: I can come around with a microphone, if there are some questions.
ARI NE'EMAN: Got over there.
AUDIENCE: I can speak up.
KATHY FAHEY: Oh, there are some people who [INAUDIBLE].
AUDIENCE: Thank you. That was very interesting. And, as you were speaking, I kept noticing you used the term "disabilities." And I wondered, do you have a better term than "disabilities" that you would suggest that we use?
ARI NE'EMAN: [INAUDIBLE] interesting question. I feel very comfortable toward "disability." And I'll tell you why.
You know, for a great many decades, disability rights advocates have worked to educate folks about the social model of disability. And what the social model says is that the problems facing people with disability-- so, people with disabilities, the disability part of being a disabled person-- are caused by the interaction between people's characteristics and the society we live in. So, just to give an example, if you are a wheelchair user and you can't get into a building, the traditional model, the medical model, of disability will say, well, it's because you can't walk. The social model will say, it's because nobody thought to put in a ramp, because people like you aren't supposed to go into a building like that.
And you can apply that to autism and neurological disabilities, as well. You know, if you are an autistic child or a child with any disability and having trouble to accessing a curriculum, the medical model will say it's because your brain is defective. The social model will say it's because our teacher preparation programs don't think about people like you and don't include people like you.
So I'm comfortable with the word "disability," because I use it in that social-model perspective. And also because it has a long and illustrious history. Ed Roberts, Judy Huemann, the Americans with Disabilities Act, Section 504 of the Rehab Act, and a lot of other things, we don't view autism as a disease to be cured. And we don't think we're in need of fixing.
But we do feel comfortable with the word "disability," because we understand what it really means, and we make common cause with the broader community of folks with other disabilities who are trying to get society to understand the same thing.
AUDIENCE: So, when you say "we," who-- I'm just wondering who specifically are you speaking for. Are you speaking for ASAN? Or are you speaking for the community as a whole? Are there any other perspectives on terminology that you could shed light onto?
ARI NE'EMAN: Sure. So I can only speak for myself and the organization I represent. I think that any community needs to acknowledge that there are going to be multiple voices in giving discussion. I would say that--
Well, first let me ask you, on what would you like to shed light on other perspectives? Be more specific about the topic.
AUDIENCE: Sure. So, I'm specifically referring to the previous question, like, terminology, in terms of what would be the most appropriate phrasing. Because I know that I'm a psychology [? leader ?] here, so we talk a lot about, for example, I think that calling someone who has schizophrenia a "schizophrenic" would be wrong. And so I'm just wondering if there are different feelings about that within the medical community, as well. So I was wondering if you could shed light onto what your thoughts and feelings are about other ways, or other ways of different terminologies for referring to someone who has autism.
ARI NE'EMAN: That's a great question. Terminology is always a function of people's experiences. People with intellectual disabilities feel very adamant about person-first language. And that's a very big part of-- very big part of that is the history around the use of the R-word and dehumanization of people with intellectual disabilities.
When we talk about the use of identity-first language, saying "autistic person" rather than "person with autism," the reason that we do that is because we're kind of pushing back against the Lovaas or Bettelheim or Rimland perspective, that autism is something separate that attaches itself to a nonautistic person and can be removed through much the same process. And so our history of abuse and dehumanization and being disempowered is really closely tied to the idea that somehow you can separate our being autistic from ourselves.
And that's really what feeds into the use of the identity-first language. The deaf community has a very similar situation. One thing I've noticed that's somewhat interesting is that people who have both an intellectual disability and an autism diagnosis are more likely to subscribe to a person-first formulation.
So, on our website, we talk about both perspectives. ASAN typically utilizes identity-first. But the main thing we want to really reinforce is that nobody should be going to someone and saying, I know how you should refer to you. And that's something that's happened a lot to our members.
Our Australian affiliate, when they first launched, they put out a press release saying, we're a group of autistic people interested in advocating on housing, employment, services, these topics. And the first response they got back was from a parent that said, well, that's all well and good, and, you know, good for you for talking about that. But I've been advocating for several decades for you to be called "people with autism." So how dare you, et cetera, et cetera.
The most important thing is to abide by people's preferences. I would say a growing consensus-- and no consensus is complete. But a growing consensus in the autistic self-advocate community is in favor of identity-first.
AUDIENCE: Hi.
KATHY FAHEY: Go ahead.
AUDIENCE: Hi. Another question regarding terminologies. Relatively early in your presentation you mentioned how society has moved on, [INAUDIBLE] from [INAUDIBLE] to "low-functioning" and "high-functioning." And you mentioned that this is a disturbing trend that are still utilized by too many circles in our society. So, I guess, is there any alternative [? you'd ?] suggest in distinguishing different [? severity ?] of [? condition ?] [? for ?] individuals? Or are you against the very idea of any sort of categorization?
ARI NE'EMAN: I think it's best to describe people based on their actual characteristics. So the question was, is there an alternative term, other than "high-" and "low-functioning," to describe autistic people based on what kinds of challenges they face or how they interact with the world? Is that an accurate description of your question?
AUDIENCE: Yes.
ARI NE'EMAN: OK. One of the other problems with "high-" and "low-functioning," aside from kind of the moral questions about ranking people, is that they're not actually very descriptive terms. If you talk to one person, and, you know, they'll say, well, that person is very high-functioning, because they can talk, if you talk to another person they'll say, well, that person is very low-functioning, because, you know, they can't hold down a job. And so, even though it can be a little bit more difficult for shorthand, when talking about people or even talking about groups of people, we might use phrases like "autistic people with intellectual disabilities" or "autistic people who can speak" or "autistic people who can't speak" or "who only communicate through augmentative communication," or any number of other characteristics.
Autism is somewhat different from many other diagnoses, although not from every diagnosis, in that it's very much on multiple dimensions. And so the use of "high" versus "low" doesn't accurately communicate the nuance in any one person or group of people's lives. We argue for being more descriptive and, you know, avoiding terms that imply hierarchy. Does that answer your question?
AUDIENCE: Yes [INAUDIBLE].
AUDIENCE: In Spain-- so I'm from Mexico. And my [INAUDIBLE]. Now, in Spain, there, most parts are going for the identity-- no, person-first, sorry, person-first. But Spain is still-- mmm, yeah-- so, very much at beginnings of acceptance of autism. So there is no inclusive classrooms. They are fighting for inclusion, they are fighting for basic rights [INAUDIBLE], you know, many people here take for granted.
Do you think that the person-first thing is going to hurt them, in the long run? Or is it, like, a step in the evolution of acceptance?
ARI NE'EMAN: I think that the shift from label to identity is something that can really only occur when you have a group of people who are directly impacted-- in this case, autistic people themselves-- to make that change and to push for that change. So, you know, the person-first formulation is really rooted in the idea that autism is just a label, and so we want to really reinforce that these people are people, and they're not their label. The identity-first formulation is focused on saying, well, autism is an identity, as well, and we don't want to separate people from their identity or imply that it's incompatible with personhood.
I think that there are sort of stages in disability advocacy in a country. And it's very understandable how a person-first formulation would be the natural inclination of a primarily parent-led advocacy movement that's focusing on things like school inclusion, getting folks out of institutions, and a number of other things. I think the way that you start to encourage that shift is by getting the emergence of self-advocacy groups, so that they can start to articulate, well, we start to view things from more of an identity prism. Maybe it's time to change our terminology.
To get to that point, where you do have self-advocacy groups, requires often a lot of work on encouraging greater inclusion in society, first. So, different countries are going to get to that point at different points in time. Does that answer your question? Great.
KATHY FAHEY: We have to keep moving out of the room. So thank you so much to Mr. Ne'eman. We really appreciate it.
ARI NE'EMAN: Oh!
[APPLAUSE]
'Neurodiversity' is a concept and a movement started by individuals with Autism Spectrum Disorders to promote a sense of community and self-advocacy among individuals with atypical neurological wiring, and to re-frame the discourse from a focus on deficit to an appreciation of difference.
Ari Ne'eman, president and founder of the Autistic Self Advocacy Network and member of the United States National Council on Disability, spoke about neurodiversity Feb. 11, 2014. The event was sponsored by the College of Agriculture and Life Sciences, Office of Academic and Diversity Initiatives, Residential Programs, and Student Disability Services.
