Main Content

Autism and the Disability Community: The Politics of Neurodiversity, Causation and Cure

“Autism and the Disability Community: The Politics of Neurodiversity, Causation and Cure”
By Ari Ne’eman
October 29th, 2013, Emory University.


First, thank you so much for having me here; a particular thanks goes to the Disability Studies Initiative here at Emory, but also to all of you here at Emory, but also to the wide variety of stakeholders I know are necessary to put together an event of this nature.

I want to begin in somewhat a curious place if I may. If you were a movie-goer in 1917, there was a very significant chance that you went and saw The Black Stork, entitled “a vivid pictorial drama about why Dr. Harry J. Haiselden refuses to operate to save the lives of defective newborns.” The Black Stork was a reasonably popular film at the time, and it was a propaganda piece for the eugenics movement.

What many, but not all, movie goers may have been aware of with regards to The Black Stork was that it was roughly based on a true incident. Dr. Harry J. Haiselden was a real Chicago physician who, about a year or so prior to the release of the film, delivered a child who was born with significant disabilities and required an operation shortly after birth to save the child’s life. And acting against the wish of the mother, Dr. Haiselden refused to perform the operation, believing that such children should not be allowed to live. Not only did he believe this, but he believed it with such strength and conviction and believed so much that other doctors should follow his example, that he called the newspapers to try and make an issue of this and to really try to send the message that the medical profession writ large should not be acting to save such children.

Dr. Harry Haiselden played himself in the film and the film is a fairly dark period in American history when you read a little bit about what actually happens in it, because it opens with Dr. Haiselden walking across the screen and you can see through a window into a child’s bedroom, and there’s a child with some obvious physical disability inside the room, kind of looking out the window, forlornly wishing they could go outside and play and Haiselden says to the camera, “Well, something’s clearly wrong here but the child isn’t to blame.”

And then he goes on to explain the basic spiel of the eugenics movement, that our nation should be aiming to breed better human beings in much the same way that one might try to breed better horses or better dogs. And then we see a flashback to an earlier period in this child’s life, and this is where the movie begins to take its cue from real life events, because the child is born to his mother and he has some obvious disability, and there are two doctors which start talking to the mother. One is Harry Haiselden who is presented as the hero and says, “Well, you really should just let this child die; it’s the best thing for the child; it’s the best thing for society,” and the other [doctor] is presented as this spectacularly arrogant figure, “I can save your child’s life; you should let me save your child’s life because it will speed my glory,” and so on and such forth.

And the mother is about to go with the arrogant, the movie would have us believe, ill-advised second doctor, but all of a sudden she has a vision of the future in which this child, so sickly, so pathetic, so weak, he doesn’t really have any prospects in life; he’s utterly worthless. The movie shows us he’s utterly worthless because he can’t even join the military; not even Uncle Sam will take him. This is the ultimate sign that this child’s life is not worth living. And, finally, he grows to adulthood, and so he goes to the store and he buys a gun. And he tracks down the doctor that operated to save his life and he shouts at him, “Why did you suffer me to live?!” and he shoots the doctor and all of a sudden the mother’s vision ends and she realizes, of course, she should let Doctor Haiselden kill her child through neglect. And there’s this kind of vision of the child’s soul, flying into the arms of a spectral Jesus-like figure before the film ends, followed by a brief editorial in support of the passage of national eugenics laws regarding involuntary sterilization and restrictions on marriage.

So, I bring up The Black Stork, not just because it’s a very vivid description of a very dark period in American history, but because I believe that the only way in which you can properly understand many of the debates which occur within the disability community today and that really define large parts of disability politics today, is by looking at disability, particularly intellectual and developmental disabilities, although not exclusively, within that historical perspective.

That historical perspective, at least one take on it, starts with the eugenics movement in the early part of the 20th century which, as many of you are familiar with, did a heck of a lot more other than make various agitprop cinema. Eugenics was responsible for the involuntary sterilization of tens of thousands of Americans. Many of you are familiar with the Supreme Court’s Buck v. Bell case, which ruled that such sterilization was entirely legal; Justice Oliver Wendell Holmes stating that three generations of morons is sufficient and the State has an interest in eliminating such parts of the population. But what is less recognized in the minimal public consciousness today around eugenics is that America’s institutional industrial complex really emerged as a result of the eugenics movement.

Over the course of the 20th century, the first half of the 20th century, we saw a vast increase in institutionalization of people with disabilities or people who were perceived to have disabilities. And what’s interesting about this is that the population that was being institutionalized was largely being institutionalized under the very explicit argument[s] that doing so would protect the general public from having to live with these people, and from allowing these people to infect the general public, either through being a burden on the states or through breeding and creating future burdens on the states.

Insofar as there were medical classifications which surrounded this, they were very much not what we would refer to as scientific today. The terms idiot, moron, and imbecile were used at this point in a clinical sense but very often the classification that was provided was nothing more than just feeble-mindedness. And at one point in the 20th century, three in every thousand Americans was in an institution. Now, who were these three in every thousand Americans? By and large, contrary to the claims that are sometimes put forward that institutions were built only for the most severely disabled (as if that, somehow, makes segregation okay) but, by and large, contrary to those claims, these were not people with severe disabilities, mainly because in the first half of the 20th century people with severe disabilities mostly died shortly after birth. There was not a large population of people with severe disabilities to be institutionalizing wholesale.

What you saw these institutions built to house was, really, anyone who wasn’t socially valued. So, if you were an orphan child wandering the streets of Pittsburgh, you might be picked up and taken to the Polk State School which was a few hours outside of Pittsburgh and was generally considered “Well, they’ll have something to do with you there.” You know, you had babies who were left in baskets out in front of the police station or the institutional administrator’s office and were sent there. You had even some people in the American eugenics movement calling on their political enemies to be institutionalized.

In an address to the Conference of the Missouri Medical Association, the newly elected president of the Missouri Medical Association talked about how we could fix all these social problems if we dealt with these undesirable populations through a program of eugenics. We could reduce prostitution such and such percent; we could reduce crime such and such percent; we could even get rid of these IWW [Industrial Workers of the World] folks who were labor union at the time, referred to them as the Wobblies. They were considered a target of eugenics as well.

I think it’s interesting to think about that because today many disability rights advocates talk about the Social Model of Disability, which I think most people here are familiar with, but just very briefly, it basically says that disability and the challenges posed by disability are the result of society and society’s interactions with the characteristics that people with disabilities have. What you might be able to say is that the eugenics movement had the reverse of the social model. Mainly, that society’s problems, all of them in the eyes of some eugenicists, really could be tracked down to the idea that there were these unfit people and if we find some way to segregate and remove these people from the gene pool, we can fix a wide array of different social problems.

Let’s move forward a little bit from 1917 and I want to go to 1942. And 1942 is an interesting year, in part, because it’s a point in time in which the American Psychiatric Association, in its main journal, publishes a dialogue between two people: one, a Baltimore physician by the name of Leo Kanner (and Leo Kanner’s going to be very important; we’re going to be talking about him a little bit more later) and the other, by a neurologist by the name of Foster Kennedy. And the focus of this debate is whether or not America should adopt a policy of euthanasia toward severely disabled children and adults. Foster Kennedy argues the affirmative; Leo Kanner argues the negative. And, of course, Foster Kennedy’s rhetorical techniques are not that dissimilar from what we see in many discussions in disability communities today. He starts by saying, “Look, it’s important to acknowledge that there are many people who are really only mildly disabled; this doesn’t really apply to them. We’re really only talking about people who have such severe disabilities that they’re never going to be able to contribute anything to society and so it’s really just sentimentality that lets us keep them around. We should adopt a rational, scientific approach and institute a policy of euthanasia towards such populations.”

Leo Kanner is horrified, being a refugee from 1930s Vienna. He sees in this something that is very much the primal, visceral level he knows is wrong and he has some experience with where it leads. So he says, “Should we psychiatrists take our cue from the Nazi Gestapo?” And it’s a very poignant, powerful moment and you would think it would be enough to convince virtually anyone, except that at the end of this publication, after Foster Kennedy has his word and Leo Kanner has his, the Journal publishes an unsigned editorial, meaning it potentially implies the opinions of the editors, basically arguing that Kanner, well-intentioned, is really just being sentimental about this and we should go with Kennedy and the United States needs to back enabling legislation to allow this to happen. And the reason why what we would be doing, if we pursue this policy, is different from Nazi Germany is we would be doing it strictly within the balance of rule of law and there would be processes and procedures to make sure that it was done properly. And this was considered mainstream medical opinion in the mid part of the 20th century. By the way, it’s very interesting to note that while Kanner was arguing against euthanasia, he agreed with Kennedy that we probably did have to involuntarily sterilize this population, all things considered. So, this is where we stand in the beginning of the second half of the 20th century. This is the public view of developmental disability (and that term was actually one that really didn’t come in until a couple of decades later); in a lot of ways, it’s the public view of disability writ large.

And what’s, I think, relevant from this point forward is that the second half of the 20th century has two histories that are relevant to this conversation because here’s the point in which the conversation on the politics and the policies and the rhetoric and the research and science of the autism world and the politics and rhetoric and research and science of the larger developmental and intellectual disability world, that was associated with what was then called “mental retardation,” really diverged in a very significant way, in a way that has a lot of consequences to where we are today in our public conversation about autism.

Leo Kanner, a year after the infamous Kanner and Kennedy debates, publishes a paper which, at the time, is considered very much seminal, describing this phenomenon he’s discovered in his research in Baltimore, basically identifying what would come to be called autism. Initially, he talked about it as autistic psychopathy or as a variant of schizophrenia and, initially, Kanner’s work, he thought this was something that was very rare and was not really present in much of the population. Around the same time that Kanner was doing that work, Hans Asperger, still in Vienna, was doing work of a very similar kind and really articulated and published about roughly the same phenomena except Asperger’s work described the autism spectrum more broadly and Asperger always thought that this represented a fairly distinct, but still reasonably large minority, in the population that more correlated to our modern understandings of autism. Asperger’s work, however, was not translated to English until the 1980s and didn’t really receive much attention, in part because, in 1944, German was not the world’s most popular scientific language, for reasons that should be only too obvious.

But after Kanner’s paper on autism, as we move into the 1950s and the 1960s, the person who defined, really more than anything else, how the public and how the mainstream research field viewed autism was not primarily Leo Kanner. It was primarily someone by the name of Dr. Bruno Bettelheim. Many of you who have familiarity with the history of autism will know Bettelheim’s name because Bettelheim today is viewed as very much an infamous figure, in large part because the central component of Bettelheim’s hypothesis around what caused autism – which was also the central component of how he structured his approach to services and interventions, and what, in his mind, he considered treatment – was his belief that autism was caused by poor parenting. Bruno Bettelheim popularized something called the “refrigerator mother” theory, which, basically, said that, well, autistic children are withdrawn and do not communicate in part because they sense their mothers’ innate frigidity towards them and this causes them to withdraw within themselves; and, autism is primarily psychiatric in nature and it’s really the result of bad mothers. And to prove this, Bettelheim pointed to things like the fact that he had observed that many parents of autistic children that he had interacted with seemed reluctant to hug their child.

Now, of course, today, I think we would quite reasonably understand that that’s in part because autism comes with a certain degree of sensory hyper-sensitivity and many of us find hugs, particularly unexpected hugs, to be very overwhelming and unpleasant. So what we were actually seeing is those mothers having a better understanding of their children than Bettelheim did and, in part because of that, Bettelheim branded them as the real culprits in conversations about autism. Bettelheim had a wide variety of views as to how you were supposed to recover autistic children from the results of their mothers’ poor parenting. Many of them are, regrettably, still common, primarily in France and Francophonic countries, and certain parts of the developing world; but, by and large, we’ve seen the “refrigerator mother” theory pretty heavily discredited today.

But, what it did is, it left the autism world with a very momentous and important split because it basically said to parents of autistic children, “The advocacy that you should be focusing on is very different from the advocacy that’s being focused on in (what was then called) the mental retardation community. It’s very different from the advocacy you should be focusing on in the community of people with physical disabilities – cerebral palsy or spina bifida or muscular dystrophy or what have you. You need to be focusing on advocacy around what causes autism because, at the moment, you’re considered what’s to blame.”

And the two major legacies, let’s say the three major legacies of the Bettelheim era that are still with us today are that [first] the autism advocacy movement, at its earliest period, developed separate from the broader, what would become, developmental disability advocacy movement; number two, the focus of autism parent advocacy was on what causes autism rather than on trying to focus on services or supports, enhancements, and quality of life; and number three, there was a view, in part rooted in Bettelheim’s early views of autism as something that was psychiatric in nature, that autism was something that was induced and that you had a normal child and then something happened and then an autistic child resulted as a result of that something. And that, presumably, if you found the right treatment or medicine or what have you, you could reverse the process.
So let’s look at the non-autism world for a moment as this is going on.

Let’s look at what’s going on in the rest of the autism world as this is happening. In the 1960s, President Kennedy, in the early 1960s, President Kennedy comes to office and, in part because of a family connection to what was then called mental retardation, he makes that a major priority for his administration. What would later come to be called the Developmental Disabilities Act passed in the early years of his administration. He allocates funding for service provision, still primarily within an institutional model. He creates the National Institute for Child and Human Development. Initially, there’s a heavy focus on causation of mental retardation but that starts to change relatively quickly and, all of a sudden, advocates in the mental retardation community are very excited because they’ve got the President on their side and they can move federal policy in a very big way. And then, all of a sudden, he goes to Dallas and he’s shot and, all of a sudden, they don’t.

Obviously the country is in a tremendous amount of mourning during this time and it’s sad for everybody, but it’s particularly sad and particularly aggravating for the mental retardation advocacy community because Lyndon Johnson isn’t really interested in these issues to a significant degree in the way that President Kennedy was. And so, there was a very considerable degree of interest in “What can we do to regain momentum? What can we do to move forward the conversation?” And what we saw was the emergence of a political coalition. Advocates in the mental retardation community went to advocates in the cerebral palsy community, the muscular dystrophy community, the Down syndrome community, and a wide variety of other parts of the community of people with disabilities that were present from birth and, basically, proposed to create a coalition and said, “We will include you in the legislation that President Kennedy passed about us; we’ll move from a definition of service provision that just focuses on that label (of what was then called mental retardation and what is now called intellectual disability) to one that focuses more broadly on disabilities that reach certain functional impairments and are present from childhood, but in exchange, we want to see the emergence of a broad advocacy coalition.” And when you have a broad advocacy coalition, you pretty much have to focus on services and supports, education, quality of life, and a wide variety of other things that today would be very familiar to disability rights advocates. It’s very hard to say, “We want the emphasis to be finding the cause of cerebral palsy, or finding the cause of intellectual disabilities,” when most of your advocacy work is working in a coalition with a wide variety of other advocates. So in the developmental disability community, you saw advocates focusing on more bread and butter issues.

In 1973, in part through collaborations with the independent living movement, and the physical disability community, the Rehabilitation Act was passed. In 1975, the Education for All Handicapped Children’s Act was passed, in part because of strategic litigation brought by the developmental disability community, leading to the establishment of the right to a free and appropriate public education in the least restricted environment. And you really start to see the emergence of this idea in developmental disability advocacy that the focus should be not on the causes, but instead on understanding how we can make people’s lives better.

In the autism world, something very different is going on. In the 1960s, O. Ivar Lovaas had two major research projects at U.C.L.A. One was called the U.C.L.A. Feminine Boys Project, and the U.C.L.A. Feminine Boys Project was Lovaas’ attempt to try and “recover” children he deemed to be at risk of homosexuality, in large part, through the use of behavioral intervention. And he believed that, through this behavioral intervention, he could make these children essentially appear normal. Now today, that project is highly stigmatized and rightfully so. Many of Lovaas’ patients would eventually commit suicide and the entire premise was really a very questionable one.

But Lovaas’ other project, the U.C.L.A. Autism Project, was really predicated on a very similar approach: the idea that, through behavioral intervention, he could “recover” autistic children and make them, and I quote, “indistinguishable from their peers.” And Lovaas’ approach, while not predicated on the idea that autism was caused by poor parenting, had a very significant commonality with Bettelheim’s approach, in that his idea of the goal of autism intervention was to take the autistic child and make them appear as non-autistic as possible. Lovaas, in order to do that, was willing to utilize aversives – the use of pain as a means of behavior modification – and a wide variety of other techniques that we today, I think, would recognize as very unethical but are still present to a disturbing degree within the scope of autism interventions.

The other person who starts to play a very significant role in the autism world at this time of separation from the larger developmental disability world is somebody by the name of Bernie Rimland. And Rimland, his rightful and justifiable claim to fame was [that] he was one of the main people who served to disprove the refrigerator mother theory in the context of autism.

What Rimland did after that is a source of, I would say, much more damage because Rimland began to make common cause [with] and really worked to encourage groups in the parent community, that believed that autism was the result of vaccines. And some of you are aware that this is a movement that’s present to a disturbing degree today in certain parts of the autism world. And Rimland’s approach was not only focused on pushing this discredited idea around causation, but was also focused around the idea that, if you believe that autism is actually heavy metal poisoning caused by vaccination, there are all kinds of treatment modalities that would emerge as a result of that and Rimland’s autism research institute promoted and still promotes a number of pseudo-scientific interventions ranging from chelation to the use of industrial solvent as an autism therapy, to the use of any number of other things. We’ve seen the emergence of a quack industry around autism interventions which preaches everything from Lupron, the chemical used to chemically castrate sex offenders, to a wide variety of other disturbing things as autism cures.

And what we see again, here, is this view of the autism world that has its roots in Bettelheim, because the parent community, initially, quite understandably, saw its focus as being around autism causation. And having been accused of being the source of autism, they then turned around and felt, well, I think we’re inclined to be sympathetic to an understanding of autism causation that says that the medical community is the source. And this is part of why we see the vaccination hypothesis gain so much credibility in certain parts of the autism parent community, despite the fact of any real support or evidence in the research literature for it.

During this time, there’s really an interesting process of self-selection because I talk about the parent community as if it’s a model of identity and it really isn’t, but parents who were interested in a focus on services and support for their children would disproportionately go into broader developmental organizations as the focus for their advocacy. Parents that were interested in focusing on causation would go into autism-specific organizations and that’s kind of understandable; those were the basic distribution of what kind of work these organizations were doing. But it meant that the worse the situation got in the autism world, the less likely we’re going to see a correction occur among the people who were primarily in control of autism advocacy at the time, the parent movement, because, if you were concerned about the idea that all of the focus in autism advocacy and all of the focus in autism research is on this idea of causation, is on often questionable use of interventions, then you’re probably not going to join an organization that preaches those things; and so those organizations are going to be more and more made up of people who have views that are aligned with these things that are largely toxic to autistic people and our families in the long term.

You really start to see a correction occur only in the 1990s and that’s because of the rise of the self-advocacy movement in the autism world. Around the 1990s, you begin to see, for the first time, autistic people who either have grown up knowing that they’re autistic, or who are diagnosed autistic in adulthood, typically at the time in early adulthood, and now are going to autism organization conferences and autism events, looking to connect with other autistic people. And some of that was occurring, there was very frequently small gatherings of autistic people on the sidelines of autism conferences, but there was also kind of a realization that what was being said about us was not really how we viewed ourselves or how we wanted to be represented to the public.

In the early ‘90s, Jim Sinclair, who many people talk about as the founder of the neurodiversity movement, wrote an essay which was intended as an open letter to parents. Jim Sinclair was an autistic person that had been attending autism conferences, sometimes he’d been speaking at autism conferences, and he was frustrated by the fact that, and this is common in large parts of the disability community, people were very interested in asking him very personal questions about his life, but they weren’t very interested in asking him what he thought autism advocacy priorities should be about.
Jim Sinclair coined the phrase “self-narrating zoo exhibits” for the role that self-advocates were expected to play at autism conferences, and it’s a role that I think a lot of disabled people at non-consumer/self-advocate controlled conferences would find very familiar. So, he wrote this open letter to the parent community which was intended as a communication of what Jim Sinclair’s views were, in the political and the larger cultural sense, for the autism world, not just in talking about his personal experiences, in fact, not in talking about his personal experiences at all, but instead really an articulation of where Jim Sinclair felt that the parent movement had gone wrong. And the letter is called “Don’t Mourn for Us.” And it includes a lot of interesting language, but the most important is when Jim wrote, that “When you say ‘I wish my child did not have autism,’ what you are actually saying, intentionally or not, is ‘I wish I did not have the child that I had and had a different child in that child’s place.’”

And that’s very much a sea change from the Bettelheim model of thinking which looks at autism and the person that experiences autism as two separate things. What Jim Sinclair very rightfully pointed out, and what became the basis for this new model of autism advocacy run by and for autistic people, was that if autism is something that – as we believe and an increasing amount of scientific evidence shows – is present from birth, it is part of us; it is pervasive and it colors every aspect of how we experience the world. And, so, if you say, “I want to cure or fix or make non-autistic an autistic child,” what you’re actually saying is, “I want to make this child something fundamentally different from what they currently are” and “I’m really aiming to replace that child with the child that I wish that I had.”

You notice that neither I nor Jim Sinclair use the traditional person-first formulation in our conversations about autism and that’s largely because a growing amount of self-advocates in the autism world don’t really think of ourselves as people with autism, anymore than we think of ourselves as people with American citizenship or people with maleness or people with, I don’t know, Judaism, or any number of other things, but, instead, view being autistic as part and parcel of our identity and something that’s inseparable from us. And this idea, which came to be known by the word “neurodiversity,” short for neurological diversity, became a very important part of the counter-movement in the autism world, to try and take the autism conversation somewhere very different from where it had been before. If you talk to a growing number of both self-advocates and parents today, there is a significant criticism of many of the dominant organizations in the autism world because of the fact that the majority of research and investment and attention focused on autism has really prioritized causation at the expense of quality of life.

Of the 217 million dollars that the National Institutes for Health spent on autism research in 2011, approximately one-and-a-half percent was spent on research on the needs of autistic adults. And slightly less than two-and-a-half percent was spent on research focusing on improving the quality of services for autistic people and our families. You see, more and more in conversations around autism, a recognition that the idea of what the public’s goals surrounding autism should be are very much disputed within the autism community. And that dispute is often being presented as being driven between parents and self-advocates. What we’re seeing more and more of now is parents are starting to break with some of the more powerful autism groups and at least better funded autism groups out there and make common cause with the self-advocacy movement to begin to shift the conversation on autism to be one that focuses more on services and supports and more on quality of life.

The neurodiversity movement has a number of practical implications, one of which is that we want to be moving the kinds of service provision that we provide to look at services in a more integrated setting, because the idea is not to look at autism services as primarily medical in nature, or that they should be taking place in a hospital type environment, but really as part and parcel of how we live our lives as autistic people. This is very much consistent with the broader disability rights movement’s philosophy. But also that we need to be moving away from the idea of the goal of autism interventions as making autistic children and adults “indistinguishable” from our peers. We need to be removing that idea from Lovaas, from autism service provision, and instead focusing on services and supports that are oriented around maximizing people’s quality of life, are oriented around giving people access to the things that they hope for.

And that has implications not just in the context of research or in the context of service provision but also within the context of advocacy as well. One of the criticisms that many self-advocates make of organizations like Autism Speaks, which is the largest and best funded autism organization out there, is (a) that very little of their money goes toward services for autistic people – only four cents on every dollar donated to Autism Speaks comes back in the form of investments in services in that community or nationally for that matter, (b) that there is not representation of autistic people, ourselves, in Autism Speaks leadership structure in any meaningful way, but also (c) the way that autism is talked about in Autism Speaks, its advertisements, really, again, speak to the idea of autism as some external tragedy that comes and takes a previously normal child and places an autistic child in their place, and that the goal of autism advocacy is to try and correct this tragedy.

To give you a couple of examples of what I’m talking about here, a number of years ago, Autism Speaks released a fundraising video in which they had one of their senior executives talking about how she had seriously considered taking her autistic daughter, putting her in the car, and driving off the George Washington Bridge. But she didn’t because she also had a normal child as well and had to, somehow, persevere on for the sake of the normal child. This is a regrettably common formulation in large parts of the autism advocacy world and where we’re seeing it play out currently is in arguments between self-advocates and many parents, and certain other parents in the aftermath of incidents in which parents do kill their children. And the point that we’ve been trying to make is, very often the way the media talks about instances in which parents kill their autistic children or children of any other disability, is they try and present it (and certain parts of the parent community try to present it) as a story primarily around services or lack of services; whereas we would view it, really, as about an ideology that’s very common in certain parts of our culture that preaches that it’s better to be dead than it is to be disabled. And that view, that the deaths of disabled people, aren’t the tragedy but that our lives, in fact, are.

And so the neurodiversity movement and the self-advocacy movement are really designed to respond to this and are designed to correct this, but also designed to put forward a vision of what it means to be autistic and what it means to engage in advocacy around autism that is also proactive as well as reactive. And in a variety places in which autistic people have gathered together, we’ve seen the emergence of an autistic culture that has had a profound impact on how we live our lives and has had a profound impact on how we view ourselves. Some of that impact comes in the form of access. Rosemary and I were talking earlier today about the need to incorporate access needs for autistic people and other people with disabilities that impact social communication in various events and conferences put on by the Disability Studies Initiative. Well, let me give you an example of what I’m talking about there: out of some of the larger gatherings of autistic people in conferences run by and for us, we saw the emergence of something called the Communication Color Badge system. And what that basically is, is if somebody doesn’t want to talk to people at the moment, they feel overwhelmed, they feel like they can’t really communicate with anyone, and they don’t want to be approached, they wear a red badge and it also says RED for those who are color-blind. If somebody does want to talk to people they already know, but they don’t really feel comfortable talking to new people, they wear a yellow badge which also says YELLOW; and if someone wants to talk to someone or wants to meet new people, but they don’t really feel comfortable making that approach, they wear a green color badge, and that really sends the message that “I want you to come up to me and introduce yourself and I want to have a conversation with you even if I’m not approaching you.” This is kind of a vision of access that is very different from what many people think about in conversations about disability access, because it’s one that really speaks to types of disabilities and types of interactions with society that aren’t the same as ones in which we talk about physical architecture or the architecture of technology or other similar things, but really speaks to the social architecture of our society.

And there are a lot of other similar examples. And one of the areas of value and proactive visions of the neurodiversity movement is to take these things that developed within the autistic culture and to try to bring them into the broader culture, both as a way of making the broader culture more accessible for us, but also as a way of trying to ensure that the broader population can benefit from a universal design perspective from these things as well. How many of you think that a Communication Color Badge system would be really useful during college orientation? Or really even during the rest of the campus, during the rest of the year! I mean, to be perfectly honest, I think there are a lot of people with or without an autistic neurology who would benefit from being able to put on a green, yellow, or red badge every so often and having the population at large understand what that means.

How would our society benefit if we started to recognize that traditional forms of body language, like making eye contact or not rocking back and forth, didn’t necessarily correlate to the ideals of somebody being more trustworthy or more competent or more fill-in-the-blank that many people presume that they do? And so I think autistic culture and neurodiversity’s efforts to bring the ideas of autistic culture into the mainstream have a benefit that goes beyond just making the world more accessible for autistic people, but that also speaks to the idea of the value of autistic culture and really, in other manifestations, disability culture writ large, can bring to the world as a whole.

And I think that’s a really interesting and worthwhile note to end on because it kind of takes us full circle from where we started back in 1917, in the throes of the eugenics movement, in which the problems of the world are defined as all emerging because of the existence of people with disabilities. If our vision of the world can change, if we can start asking the question, “How can we look to what the community of people with disabilities can offer society writ large?” and also, “How do we look at a vision of worth and dignity that really recognizes all people as being equal, regardless of what they have to contribute?” you know, that, in and of itself, really serves as a very valuable legacy that the disability rights movement and all its various offshoots, self-advocacy and the neurodiversity movements, can leave in its wake as it continues to work to change the world to being more accessible for people with disabilities of all kinds.

And so I think that the way we want to see the disability rights conversation evolve, is to move to a conversation that recognizes that disabled people face systemic barriers and systemic exclusion and that works to address that, but it also recognizes that there is a proactive disability identity and a proactive disability culture and a proactive message and that that is something that has a great deal to offer the world.

This entry was posted in Publications. Bookmark the permalink.
Skip to top

More information