Ari Ne’eman is the Founding President of The Autistic Self-Advocacy Network, an international organisation of autistic people advocating for their rights.
Q: ARI, TELL ME WHAT YOUR PARTICULAR DIAGNOSIS IS.
NE’EMAN: I was diagnosed with Asperger’s Syndrome which is on the autism spectrum, when I was twelve years old. Before that, I had a diagnosis of ADD because knowledge about that particular part of the autism spectrum was new to the United States and was only recognized in 1994. And so I, like many other people, didn’t receive an accurate diagnosis until much later in life.
Q: SO TELL ME ABOUT ASPERGER’S. TELL ME WHAT THAT MEANS.
NE’EMAN: Well, it’s an invisible disability which is mean ... it means that people can’t see it immediately but it means we have difficulty interpreting social cues, understanding non-verbal behaviour. We have a number of sensory differences, certain fabrics or sounds are a lot more noticeable to us than to the general population. And we also tend to develop some very focused interests. Often that can become strengths as we grow and choose our various career paths.
Q: TELL ME ABOUT CREATING YOUR ORGANISATION. HOW DID THAT COME ABOUT AND WHY DID YOU CREATE YOUR ORGANISATION?
NE’EMAN: Well, as I gained greater awareness of the world around me I saw that the autism spectrum was being primarily defined and talked about by non-autistic people. Parents, professionals and others who didn’t always represent our interests and how we view ourselves as we would. I and many others that have come together to put forward the Autistic Self-Advocacy Network and a number of other autistic-run organisations and groups across the world feel that it’s essential that when you talk about autism, when you research autism, when you set policy about autism, you involve autistic people in those discussions and in those deliberations. We believe in a policy of – ‘nothing about us without us’ – as do many in the disability rights community. And that has been the motivation for my involvement and the involvement of countless other autistic people.
Q: WHAT IS IT THAT YOU HOPE TO ACHIEVE? WHAT IS THAT YOU WANT TO ACHIEVE WITH THE ORGANISATION?
NE’EMAN: Well there are a number of things. We engage in advocacy across a wide variety of fields in research, in service delivery, in media and countless other areas. And what we want is we want to ensure that autistic people have a space at the table in the discussions about us.We want to ensure that the rights, supports and services and education are provided so that we can enjoy a high quality of life and access and inclusion. And we want to orient the research agenda so that it serves our interests and does not pursue what we feel is a flawed policy of trying to prevent us from ever existing.
Q: AUTISM IS CURRENTLY VIEWED AS A PSYCHIATRIC DISORDER. TELL ME WHAT YOUR REACTION TO THAT IS. IS IT APPROPRIATELY CHARACTERIZED AS A PSYCHIATRIC...?
NE’EMAN: No, we don’t feel it is. Autism in our minds a natural and legitimate and hopefully permanent part of human genetic diversity. The problem to us not being autistic. The problem is a society that does not provide for the right education, supports and services to allow us to live a high quality of life. What we want to see is a change from the viewing of autism as a disease to be cured to which we feel is not supported in truth by either the scientific literature or our own view ... and our own views about ourselves. But instead to view it as a part of human diversity as we view differences in race, religion, sexual orientation, language and countless other things. Autism is currently viewed as a disease for the medical model. Something to be cured or eliminated. That doesn’t reflect how we view ourselves, that doesn’t reflect our realities. What we want to see is recognition that autism is not some appendage that attaches itself to people. It is a part of who we are, it’s a part of our existencies and it is not something that necessarily precludes a high quality of life. The tragedy is not autism. The tragedy is the lack of education, supports, services and other things that make it possible for us to live a high quality of life and to communicate and to do countless other things. We need to orient a research and public policy agenda towards breaking down those barriers so we can enjoy the full protections of law and enjoy the same civil rights and access as any other group of people.
Q: IS AUTISM A DISABILITY?
NE’EMAN: Autism is a disability insofar as we’re disabled by society. A society that is often very hostile to our ways of communicating, to our ways of being that often is structured in such a way that makes it difficult for us to access places of public accommodation and services and countless other things. It creates an education system where autistic people are often abused and do not have our communication and other needs met. In that sense, yes it is a disability. It can be very disabling. But is it something that we want to eliminate? No. What we want to do is we want to eliminate those societal obstacles that are the true barriers in our lives.
Q: SO IS WHAT YOU’RE SAYING – IF THOSE SOCIETAL OBSTACLES WERE ELIMINATED, IT WOULD THEN NOT BE A DISABILITY? NOT FOR ANYONE, NO MATTER WHERE THEY ARE ON THE AUTISM SPECTRUM - EITHER HIGH FUNCTIONING OR LOW FUNCTIONING, SEVERELY AUTISTIC OR NOT?
NE’EMAN: Well, am I saying that if those societal obstacles were eliminated that we would be normal? No. We wouldn’t be normal but we say we don’t necessarily have to be normal to enjoy a high quality of life. To be able to communicate and to be able to access all of what society has to offer. And I think that’s what people really want. I think that’s what we want, I think that’s even what families want. Typically when families talk about researching for a cure, what they really want to see is they want to see what will enable their children to communicate, to hold a job, to live in the community, to potentially marry and have kids.
And you know these are things that people with disabilities of all kinds can in fact do if we create a society that is open and inclusive to all. The problem is, is right now the research and policy agenda around autism is not geared towards those things. It is geared towards trying to make us indistinguishable from our peers. To try and force us to be normal for normal’s sake. And the research money and the general legislative agenda has not been aimed at supporting us, it’s been aimed at eliminating us. We don’t feel that’s an appropriate action to undertake in our name.
Q: WHAT’S YOUR REACTION WHEN YOU HEAR AUTISM DESCRIBED AS A CATASTROPHE, AS A TRAGEDY, AS A “FATE WORSE THAN DEATH”, ETC?
NE’EMAN: The characterization of autism as a tragedy or as a catastrophe or something of that is a fate worse than death is something that is truly very offensive to us. Because often those things can become self-fulfilling prophesies. If we relegate a certain aspect of society, if we relegate my people towards an assumption that we will never be able to live in the community, that we will never be able to succeed and to communicate and to do countless other things that many of us are doing and many more of us could be doing with the right supports and the right research agenda ... Then we are simply going to have a situation where we continue to be oppressed and abused. In truth, what is the real tragedy is not autism, it is the persistent barriers and prejudices that prevent us from enjoying the full range of rights and possibilities available to the rest of the ... rest of society.
Q: THE WORD “NEURODIVERSITY”: A LOT OF PEOPLE AREN’T FAMILIAR WITH THAT WORD. SO I WONDER IF YOU CAN TELL ME WHAT THAT WORD MEANS AND WHAT THE “NEURODIVERSITY MOVEMENT” IS ALL ABOUT?
NE’EMAN: Well the neurodiversity movement stands for the idea that we should view neurology through the same civil rights lens as we currently view race, religion, sexual orientation and other forms of what’s termed ‘legitimate human difference’. And basically from that perspective instead of trying to find a way of making autistic people normal or making people with other forms of neurological difference normal, what we should be doing is addressing the true problems and barriers that exist in our lives. If we have a situation in which a person is sensitive to say a certain kind of light or a certain kind of fabric, then the solution is not to try and force them to act like that doesn’t bother them. The solution is to make accommodation so they are not put in those problematic and damaging environments.
Q: LET’S TALK A LITTLE BIT ABOUT THE “RANSOM NOTES” CAMPAIGN. BEGIN BY TELLING ME WHAT THAT CAMPAIGN WAS, THEN TELL ME WHAT YOU FOUND OFFENSIVE AND WHAT YOU DID ABOUT IT?
NE’EMAN: Well, this past December the New York University Child Study Center put out an ad campaign that we felt was incredibly offensive. It consisted of a series of phony ransom notes, each one claiming to be from a particular disability which had kidnapped the child. Amongst the disabilities represented were autism and its sub-set – Asperger’s Syndrome. And we and countless others throughout the disability community felt that this idea of children with disabilities somehow not being wholly present within our own bodies, not being fully in existence represented one of the most dangerous concepts to be promoting. It speaks to age-old stereotypes that have served to promote violence, that have served to promote prejudice and discrimination against us throughout history. And we came together in a unified voice, 22 disability rights organizations and thousands of people from countless different backgrounds – self-advocates, parents, professionals, just concerned citizens to inform the NYU Child Study Center that this was unacceptable. Thanks to our efforts, within a few weeks after the introduction of these ads which were expected to run for several months and then move to several other major cities, these ads were removed and the NYU Child Study Center committed to putting forward a more respectful advertising depiction of its services in the future.
Q: AS A PRACTICAL MATTER, HOW DID YOU GO ABOUT ORGANIZING YOUR CAMPAIGN AGAINST “RANSOM NOTES:? DID YOU MAKE TELEPHONE CALLS? DID YOU LOBBY SENATORS? DID YOU HAVE A PETITION?
NE’EMAN: We conducted a broad-based grass roots campaign. In addition to offering a petition to allow people to express their support by signing their names, we also provided contact information to our supporters and to supporters from other disability rights groups and constituencies to call, e-mails and letters and basically contact NYU Child Study Center for a number of means to send a message that this type of advertising is deeply offensive and deeply damaging to people with disabilities. Now, my doing that and by promoting our perspective through the media, we spoke with the New York Times, the Wall Street Journal, the Washington Post and a number of other media venues – we were able to put public pressure to make our voices heard. I think that the fact that we put together such a broad-based coalition that we’re proud to say it was led by the Autistic Self-Advocate community but was not limited to us. It was really the major point that made that victory possible.
Q: TELL ME A LITTLE BIT ABOUT THE ROLE THAT THE INTERNET HAS PLAYED BOTH WITH YOUR ANTI RANSOM NOTES CAMPAIGN AND GENERALLY SPEAKING WITHIN THE AUTISTIC COMMUNITY?
NE’EMAN: Well for any community the Internet is an extremely cogent political tool and we found that out in the Ransom Notes ads and in other examples us mobilizing the community towards a particular end. But in addition, particularly for the autistic community, the Internet has been an incredibly valuable piece of assistive technology. It’s served to let us connect often across vast geographic distances or significant physical or social obstacles and basically form a culture and a community which many of the professionals said would simply not be possible for autistic people. To quote the Autistic Self Advocacy Network’s Vice-President, Scott Robertson, the Internet is to autistic people what American sign language is to deaf people. It’s proven to be a incredibly potent and useful communications technology, it has opened up so many doors for us.
Q: GOING BACK BRIEFLY TO THE RANSOM NOTES CAMPAIGN, ONE OF THE THINGS THAT I NOTICED IS THAT A LOT OF PEOPLE PROTESTED BY MAKING VIDEOS AND PUT THEM ON YOUTUBE. DID YOU NOTICE THAT?
NE’EMAN: Yes we did and one of the things we were very pleased by was the extent to which the bloggers and those who ... people on YouTube and other Internet communities, rallied behind us for a variety of different communication methodologies. I think it speaks to the vitality of our community that we’re approaching ... our responses to that which threatens our interests and our community in so many different ways. And I also think it speaks to some of the unique culture of our community that for many of us this is a major means of political and also cultural and even artistic expression.
Q: MOST PARENTS WANT THEIR CHILDREN TO HAVE THE EASIEST AND BEST POSSIBLE LIFE THEY CAN HAVE. THEY WANT THEIR CHILDREN TO BE RICH, TO BE FAMOUS, TO BE SUCCESSFUL, ETC. IN PARTICULAR THEY DON’T WANT THEIR KIDS TO HAVE A HARD TIME. SO CAN YOU UNDERSTAND THAT PARENTS WANT A CURE FOR AUTISM BECAUSE THEY WANT THEIR CHILDREN’S LIVES TO BE EASIER?
NE’EMAN: I understand the cure perspective but I don’t agree with it. The bottom line is that we agree with parents that children should have the highest quality of life possible. But the way to do that isn’t to try and force normalcy upon them. In truth, cure is not something that is even feasible or possible. And we also don’t think it’s something that’s desirable. The real answer towards ensuring that there is a possibility for success and fulfilling of potential for every person, autistic, neurotypical or otherwise, is to address these issues of prejudice and discrimination. And is to create a society that is truly inclusive and accessible for all people.
Q: NO MATTER WHAT THE LEVEL OF DISABILITY IS FOR THE AUTISTIC PERSON?
NE’EMAN: I think that regardless of where somebody is on the autism spectrum you can find a way to open up doors to a high quality of life. If somebody doesn’t speak, instead of forcing them to communicate in a way that isn’t appropriate to them, then let’s look at assistive technology that will let them communicate regardless. That’s an area of research that we’re very much promoting and unfortunately, isn’t really being funded right now. If somebody has difficulties in terms of motor skills or communication or things of that nature but is extremely adept at a particular field because of their focused interests on that, well let’s find a way to play to that person’s strengths and to allow that person to excel at what they are good at. It basically comes down to instead of looking at people based on how they defer from the norm, to assessing what people’s needs and desires and wants are. In terms of that individual. We shouldn’t be comparing people to this supposed normal person that is being held up as an example and really doesn’t exist in the first place. What we should be doing is finding out what people need to enjoy a high quality of life and to communicate. And yes, I believe that is something that is a possibility for every person.
Q: WHAT IS “PERSON FIRST LANGUAGE” AND HOW DOES IT FIT INTO THE AUTISM DIVIDE? NE’EMAN: Well, one of the divides between the parent community and a growing proportion of the self-advocate community is how we even refer to autism in the first place. Many of us refer to ourselves as autistic people rather than people with autism. And I think the reason for that is we’re very adamant that the autism spectrum is not something that is external to us, it is not something that as many of these ad campaigns try and portray – sneaks off in the middle of the night and steals a normal child and places an autistic one in its place. It is something that is very much a part of us and always has been. We don’t talk about a person with femaleness, we talk about women. I don’t refer to myself as a person with Judaism, just to mention another part of my identity. I call myself a Jew or a Jewish person. And the truth is, is that holding that part of our identity at arm’s length is actually serving to reinforce the sort of stigma that we’re fighting against. If we truly want to accept the autism spectrum as a natural legitimate part of human genetic diversity, then let’s accept the same kind of linguistic formulations as we would accept for any minority group.
Q: YOU SAID THAT THERE IS SOMETHING YOU WANTED TO TALK ABOUT?
NE’EMAN: One of the big things I want to stress is that the idea of neurodiversity is not just anti cure. That’s a big part of what we believe but it’s not the only thing we believe. We also think that people have a right to get the opportunity to communicate, they have a right to live in the community and not be locked away in institutions. People should not simply be ridden off because they have a different way of thinking. And bottom line, looking at neurology the same way as we look at race, religion and other forms of legitimate difference means not only stopping this quest to try and cure and normalize autistic people and other people with neurological differences. It means providing the real practical support services and education to open the doors that will allow us to succeed in various ways throughout society.
I’d like ... I’d like you if you wouldn’t mind, if you think it’s useful to ask a little bit about some of the Autistic Self-Advocacy Network’s current activities.
NE’EMAN: We’ve continued to be active since the Ransom Note ads. Of course we continue to focus on fighting misrepresentations of the autism spectrum and disability in general in the media. But we are also very active in getting people out of institutions and getting them to supports they need to live successfully in the community, in fighting for inclusive educational practices. In supporting services, supports and education that are helping many people, autistic and with other disabilities and countless others to hold jobs, to succeed in relationships and in many other ways. As well as putting forward a broad civil rights agenda to ensure that we are fully protected against discrimination and against prejudice. These are really the pressing civil rights needs and concerns of the 21st century.
Q: SO YOU’RE HERE AT SOMETHING CALLED ‘AUTREAT’ SO TELL ME A LITTLE BIT ABOUT AUTREAT AND WHY YOU’RE HERE. WHAT YOU’RE GOING TO BE DOING HERE, WHY YOU’VE COME?
NE’EMAN: Autreat is one of the largest conferences run by and for autistic people. It’s put together by Autism Network International which is another self advocate-run organization that really has done a lot of the pioneering work that the Autistic Self Advocacy Network hopes to build on over the coming years. And it’s a opportunity for autistic people from all over the world to come together and connect and share our experiences and common culture. It really is a chance to be ourselves, away from the neurotypical world.
Q: WHAT IS IT THAT THE MEDIA AND THE PUBLIC MOST MISUNDERSTAND ABOUT AUTISM?
NE’EMAN: I think one of the biggest things is they assume that autism in its many variations is some kind of a death sentence. I think one of the most damaging misconceptions that we see in the media and in the public perception of the autism spectrum is that it is some sort of a lifelong death sentence that prevents people from any quality of life, from any communication, from any possibility of holding a job or living in the community or doing any number of other things. And that’s very problematic because it serves to often become a self-fulfilling prophecy. What we need to see is a true and concerted effort to not just fight those prejudices but to put forward the services, supports and education that we know can and in many places already do exist to open those doors to ensure that quality of life is available for all. And that’s something that is in the interests of the self advocate community, of the parent community and really of society more generally. It is an unparalleled good to see a society that accepts neurological diversity as we have come to accept racial, religious and countless other forms of diversity.