Wednesday, May 27, 2009

Next Meeting: Thursday, May 28 @ 5:45pm

The Central Ohio/Ohio State University chapter of ASAN will be meeting on Thursday, May 28 at 5:45pm at the campus Barnes & Noble/Long's Cafe, 1598 N. High St. We will meet in the coffee shop area on the first floor. OSU students, faculty, staff, and community members are welcome to attend!

The main goal of this meeting is to plan for a small event commemorating Autistic Pride Day in June.

Saturday, May 23, 2009

Prism Vox Episode #3

Noranne has posted another episode of Prism Vox. It features some questions sent to her by yours truly. One the questions is would you want your child to be autistic. This question has a personal side for me. A few weeks before my now ex girlfriend dumped me she asked me this very question. My response, like Noranne's, was that I do not care but if I did have an autistic child I would be that child's advocate and go all out for their protection.

Thursday, May 21, 2009

Responses by Dylan

Our friend Dylan has posted a pair of comments on earlier posts. Since I do not want them to be lost I am posting both of them here. In response to "New York Times Article on Asperger Marriage" Dylan commented:

I can understand your feelings towards the opposite sex. Bear in mind that I am in no way undermining your opinions and personal feelings towards the opposite sex. However, understand that these feelings of uncertainty about the opposite sex are not uncommon, even among neurotypical people. Although I draw much of my opinions for my own personal experiences with relationships (most of which have been unfortunately negative), I can easily understand that my case is not only common with those on the spectrum, also with people not on the spectrum, or neurotypical. Feelings of betrayal and uncertainty often stem from a lack of an understanding of the other person. However, as a defense mechanism that in innate in the human process of thought and understanding, we tend to place uncertainty as a bad thing, coupling the unknowing with a negative mindset. Although there is nothing wrong with that, it is also necessary to understand that this sort of behavior is more instinctual than anything else, and it is our job to sort out the premonitions we create from what is factual and tangible. I can fully understand the desire to have the partner speak to you more. That is to say that I understand your desire for the spoken word rather than subtle facial expressions and the like. Often times the replacement of actual spoken word with expressions and gestures of the face, hand and body is quite an evident aspect in human interaction. Keep in mind that I fully understand that the thought process of someone with AS (Asperger’s Syndrome) greatly differs to that of a neurotypical, but, and I say this with the upmost respect, it is also imperative that we understand the other side to that statement, being that although our thought process differs from “neurotypicals”, is also applies for them. This means that, with each side having differences than the other, it is important to find middle ground between each side, and finding mediation that works with each person.

In response to "Michael Savage Banned From England" Dylan commented:

Not to disagree with you, but he does hold some merit on some aspects of his case. Autism for a student means special treatment, regardless of the intentions of the student. Student A, who has Autism, may be wary of the treatment but accept it anyway, understanding that the special education will help him to succeed. Student B, who also has Autism, may want to exploit the special education. I’ve heard several students with Autism and AS (Asperger’s Syndrome) almost use their diagnosis as an excuse for delinquent behavior, and having more leverage over teachers and peers. An example could be: If student A who does not have Autism does action X which gets him a detention, he may give some excuses as to the situation. The teacher may or may not listen, but he or she would be more inclined to give that student the punishment. Student B who does have Autism may also do action X, but they could say that because of their disability they have trouble controlling themselves. This may or may not actually be true, but the teacher would not only be inclined to take away the punishment for student B, the teacher would almost be obligated to do so. What I’m saying is is that there are some cases that people with Autism use it to their advantage. Although it is a spectrum disorder, many people may not fully understand the definition of spectrum disorder, and expect each autism-affected student to act the same way, and often forgive them for thing that normal students would not get away with, regardless if being excused for those actions was the Autism-affected student’s intention. I’m not sure if banning him from the country was the best idea, though. It wasn’t like he was a violent person, or would harm anyway because of his opinion. There could be many people with the exact same opinion as he, but the only difference is that he is able to vocalize his opinion on a wide-scale. That really shouldn’t constitute a banishment or restriction from entering a country. Also, being a “right-wing” shouldn’t matter either. Conservatism may not exactly look down on Autism, but more so the funding that is to be given to the cause, which many often expects to come from the government. I don’t agree with much that he says though, Autism is not a fraud in any case. However, going past his ranting and raving there is a sliver of truth that he takes from, being that there are some people, that have Autism, that do use their disability to their own advantage in a way that is not necessary to them.

Tuesday, May 19, 2009

Next meeting: Thursday, May 21 @ 5:45pm

The Central Ohio/Ohio State University chapter of ASAN will be meeting on Thursday, May 21 at 5:45pm at the campus Barnes & Noble/Long's Cafe. We will meet in the coffee shop area on the first floor. OSU students, faculty, staff, and community members are welcome to attend!

At our meeting on Thursday, we hope to discuss the following: a possible activity for Autistic Pride Day (June 18), encounters with another campus autism organization and how to address these issues, our funding situation, staying connected with the Columbus/central Ohio community, and any issues that others in our group would like to address.

Download PDF flyer:

Questions? Leave a comment or email us at

Monday, May 18, 2009

New York Times Article on Asperger Marriage

As people struggling with the stigma of not being able to empathize with others, one of the major concerns for those on the spectrum is the ability to successfully date and marry. With this in mind it is interesting to read David Finch’s article in the New York Times, “Somewhere Inside, a Path to Empathy.” David Finch did not discover he had Asperger syndrome until after he had been married for several years to a speech pathologist, who works professionally with autistic children. It was his wife who finally fingered him as an Asperger person. As someone who lived for years as someone who was not exactly normal and was only diagnosed with Asperger syndrome as an adult, I find David’s discussion of trying to fit in and lead a “normal” life to be remarkably touching.

Dealing with members of the opposite sex has certainly been a challenge for me. I have had my ups and downs and am still looking. Because, as an Asperger person, I put so much emphasis on what people say, I have often been taken aback and have felt betrayed by members of the opposite sex who fail to follow through with the words that come out of their mouths. I have often felt lied to. In a very technical sense I may be right. Part of learning about neurotypical thinking for me has been learning to accept these failures with some sense of charity and to try to not take it as personally.

Saturday, May 16, 2009

Newsweek Article on Ari Ne’eman

Newsweek has put out an article on Ari Ne’eman, “Erasing Autism.” The issue of research into the genetics of autism is certainly a tricky issue. One does not wish to hold back legitimate scientific research. On the other hand there are important questions to be asked particularly since we can count on this research being abused by the anti neuro-diversity people. I actually wrote a piece on this last year, back before Sarah Palin completely imploded on herself.

Speaking of the anti neuro-diversity people, they are already up in arms, which tells you how good an article it was. Hating Autism even accuses Newsweek of sodomizing autistic children. This strikes me as strange because the article is remarkably balanced. Upon reading the article I do not get the sense if the author of the article, Claudia Kalb, is for us or against us. She explains what Ari believes, gives a sense of what kind of person he is and offers some context as to the politics of autism. This is not a criticism of Ms. Kalb, on the contrary she is acting the part of a responsible journalist. One can only include that our anti neuro-diversity friends have a problem with anything that even acknowledges that articulate autistics, supporting neuro-diversity, even exist.

In regards to neuro-diversity, in case you have not seen it, please check out this twenty minute video, "Positively Autistic," done by the Canadian Broadcast Company last year on the topic. It features interviews with some of my favorite people in the autism world. First off it has Ari Ne’eman. Estee Klar of Joy of Autism is also interviewed. Ms. Klar is not on the spectrum, but is the mother of an autistic child, Adam. With neuro-diversity politics so often degenerating into autistics fighting against the parents of autistics it is good to know that people like Ms. Klar exist. Maybe we could start a “Mothers Who are Not Like Jenny McCarthy Award” or, to keep it short, a “Mom Award” to mothers and fathers, like Ms. Klar, who love and accept their autistic children instead of simply trying to “cure” them.

Sunday, May 10, 2009

First online meeting

We're hoping to test an online meeting/chat this Tuesday, 5/12 from 5:30 to 6:30pm. (We'll still be meeting face-to-face on Thursday, 5/21 at 5:45 at Barnes & Noble.) We will take notes during the online chat for those who cannot attend.

For the online meeting, we plan to use Gmail chat. We'd like to test this and see how it works for us, and if all goes well, we can make this the general format for a monthly online meeting. (And we'll be sure to provide more advanced notice of online meetings in the future.)

If you are interested in joining us for this online meeting, please do the following:

  1. If you don't have a Gmail account, go to and click "create an account." Fill out this page to create your account. (If you have a Gmail account already, skip this.)

  2. Write to and provide us with your Gmail name.

We'll be sure to send you a chat invite and everything you need to know. Gmail is free and you won't be required to download any program to participate -- everything appears in your web browser. We decided that this might be the easiest route for us all to connect.

If you'd like to participate but don't have access to a computer, don't feel comfortable with Gmail, or would rather not type, etc., please let us know. At least one of us will be at Ohio State with a laptop during the meeting, and we can arrange to meet and/or double up on computers.

Finally, please forward this to those who you think might be interested. And if you have questions, let us know. :)

Friday, May 8, 2009

NFB Disability Law Symposium Keynote Address by ASAN President Ari Ne'eman

On Friday, April 17th, 2009, Ari Ne'eman delivered the following comments to the National Federation of the Blind's Disability Law Symposium. A recording of the speech is available here on mp3 and a link to the rest of the symposium materials can be found at:

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

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

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

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

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

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

In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.

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

Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms – the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community having been deprived something else that should justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency – it was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw the ADA as a law about charity – specifically, charity for the most severely impaired – not justice for all those who are being discriminated against.

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

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

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

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

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

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

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

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

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

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

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

Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members and their co-workers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.

I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your time and I look forward to working with all of you to bring this hope into reality.

Thursday, May 7, 2009

A Request From Noranne

Noranne runs a podcast for the neurodiversity community and instead of doing her rant segment, she has decided to do a Q/A segement; questions can be about Neurodiversity, Autism, or her in particular as well as about the Podcast. Please e-mail me here at you can sign with your real name or your online alias.

Tuesday, May 5, 2009

Fighting for Autistic Rights in Hebrew

Chen Gershuni of the Autistic Community of Israel (ACI), the sister community in Israel of our ASAN, translated the Lantern article about Melanie, me and our ASAN chapter.
For those of you who are curious as to how certain words look when transliterated into Hebrew:
דוקטורנט - Doctorate
היסטוריה - History
בן ציון צין - Benzion Chinn
מלאני ירגו - Melanie Yergeau
אנגלית - English
אוטיסטית - Autistic
תסמונת אספרגר – Asperger syndrome

Michael Savage Banned From England

According to an article in the English newspaper, the Independent, Michael Savage has been placed on a list of sixteen people banned from entering the United Kingdom. I have never been a lover of Savage. Long before he went on his anti autism tirade he was a conservative extremist. According to Home Secretary Jacqui Smith:

I think it's important that people understand the sorts of values and sorts of standards that we have here, the fact that it's a privilege to come and the sort of things that mean you won't be welcome in this country. … Coming to this country is a privilege. If you can't live by the rules that we live by, the standards and the values that we live by, we should exclude you from this country and, what's more, now we will make public those people that we have excluded.

I would suggest that this sort of attitude should be of concern not just to people who believe in free speech in general but to people on the spectrum in particular. It means that our friends across the Atlantic have decided that there are certain “values and standards” that go beyond obeying the law and not causing physical harm to other people. How long before this gets turned not just against right wing fanatics but against people who simply do not fit in, people like us?

Monday, May 4, 2009

Notes from our 4/30 meeting

The ASAN-Central Ohio/Ohio State University chapter held its first meeting on Thursday, April 30. Those interested in joining us for future meetings, either online or face-to-face, can leave a comment here or can email us at for more details.

Attendance: 23 people attended altogether, at least 9 of whom were on the spectrum. There was a combination of OSU and other students (in high school and other colleges), OSU faculty and staff, parents, relatives, and other community members.

Some things we discussed:
  • We really want to take advantage of the web. We decided that we will meet once a month online and once a month in person so that we can be as accommodating/accessible as possible. (Hillary Spears, our secretary, has volunteered to come to Barnes & Noble with her laptop during the online meetings so that people who prefer communicating f2f can participate more easily.) We talked about using Skype, Windows Messenger, or IRC.

    • Gmail chat seems like a very real possibility. You can sign up for Gmail for free, and you don’t have to download anything. (Which means that it will work for Macs and PCs, etc.)

    • Melanie and Ben will work out which option seems best and will send an email to everyone with more details ASAP. Any other suggestions?

  • Our next face-to-face meeting will be at 5:45pm on Thursday, May 21 at Barnes & Noble on High St. We will hold our online meeting before then, but we've yet to determine the date/time.

  • In addition to using the this blog, Noranne suggested creating an LJ community so that multiple people can post more easily and more frequently. We have created an LJ community:

    • We should advertise this community, especially in online venues. We have posted a link to LJ on the blog. We should also advertise on relevant listservs, and possibly other LJ communities (such as asperger, autism, ask_an_aspie, aut_grads, etc.) Any other suggestions?

  • Dylan Bias is attending the Ohio Youth Leadership Forum.

  • We think we want to do something for/on Autistic Pride Day, though we're not yet sure what. This will be our first and main talking point during our online meeting.

  • We talked about how we might combat misinformation that is spread by groups such as Autism Speaks, especially on campus. One suggestion was holding a panel discussion of some sort. We also talked about political involvement and letter writing.

  • We want to make sure that the group is not wholly Ohio State-centric but incorporates the central Ohio community broadly. This was brought up by Stephanie and Justin and was affirmed by others.

Other notes from the meeting (RE: staying connected):
  • Pat Cloppert, who is on staff at OSU, briefly talked about federal support and the combating autism act (and the problematics of the language/ideology in the very name of the act)... she offered to connect us with people;

  • Robert Meier, who directs behavioral health services for OSU health services, has been advocating for coverage reform at OSU in regards to autism, and he wants to talk with people on the spectrum to get a better sense of what supports/services are needed and desired, yet are lacking;

  • Deb Ballam, faculty and director of The Women's Place @ OSU, said that if we wanted to have a woman speaker on neurodiversity, The Women's Place might be able to contribute some funding;

  • Tom Fish, faculty at OSU's Nisonger Center, suggested connecting us (as mentors) with teenagers on the spectrum who attend a support group @ Nisonger;

  • Cindy Selfe (our faculty adviser) also mentioned that disability studies @ OSU might possibly be able to help with funding for a speaker.

The Faith of Jenny McCarthy and Her War on Science

Recently Melanie delivered a presentation at a conference on the portrayal of disabilities in literature in which she discussed the use and abuses of narrative in parents’ accounts of their children’s autism. In particular she went after Jenny McCarthy, the most public face of the autism is a disease caused by mercury laden vaccines movement. Leaving the issues of narrative to Melanie, I would like to offer my own perspective McCarthy from reading her book Mother Warriors.

I am the sort of person who makes a habit out of reading oppositional literature. One might think that this is a matter of me being very open minded. I see it as a matter of me taking a masochistic pleasure in torturing myself. This form of masochism usually takes the form of me reading Ultra Orthodox (Haredi) material. I am a deeply religious person; I just happen to be the sort of deeply religious person who is strongly opposed to religious fundamentalism, Jewish or otherwise. While religious fundamentalism is traditionally portrayed simply as conservative fanaticism, born out of an ignorance of modern values, I view religious fundamentalism as a step child of modernism. In a world in which all cultures and values are to be considered equal this cultural relativism must, by definition, apply to religious fundamentalism. For example if traditional science is simply one set of values than what is to stop religious fundamentalists coming along and advocating for their “alternative” forms of science such as creationism and intelligent design.

This past weekend I sat down to engage in a little oppositional reading of McCarthy’s Mother Warriors, which I thought would be a different sort from my usual religious fundamentalist reading. Jenny McCarthy should certainly count as a non religious fundamentalist. She is a symbol of everything that the religious right hates, a former playboy model now living, in sin so it seems, with her boyfriend Jim Carrey. I received my first heads up in the in Foreword where Dr. Francis Collins was quoted. Dr. Collins is one of the leading theistic evolutionists; he is someone who believes in God, supports evolutions and is a powerful critic of both creationism and intelligent design। Now to be fair to Dr. Collins, the quote used had nothing to do with autism and was taken out of context. I assume that, as a man of science, Dr. Collins would be horrified to find out what his words were being used for. The fact that Dr. Collins was quoted was most probably a coincidence, but it got me thinking. What came next, as I read through the book, was a torrent of religious sentiment. In between McCarthy’s constant casual cussing were her constant references to her praying and her belief in God. If I did not know better, and if the book had undergone some slight editing, might have thought this book came out of Pat Robertson’s America.

Besides for her constant praying and God talk there is something else that one might associate with religion, her war on science. Let us be very clear about this. McCarthy’s line of argument goes way beyond issues of autism; it is a direct assault on the scientific establishment as represented in this case in the form of the American Academy of Pediatrics (AAP) and the Center for Disease Control (CDC) As McCarthy sees it, these organizations are the pawns of the pharmaceutical industry, conspiring to cover up the link between vaccines and autism. Behind her stripper costume of populist anti establishment rhetoric lies something even more dangerous, a war against the scientific method. In McCarthy’s "science," mommies have a special understanding of their children that trumps that of any medical professional. A parent’s intuition that vaccines can cause autism and their noticing that something is wrong after their child is vaccinated consists of legitimate scientific proof. Furthermore if a parent starts her child out on one of the special Gluten and Casein free diets or starts one of the detoxify procedures and they begin to notice improvement than that is proof that these procedures work. Strangely enough, in one of the stories in the book, the child starts to do worse after starting one of the “healing” procedures. Of course this regression, we are told, is also part of the healing process. There is even a case in the book where a child, unfortunately dies after starting “therapy.” An honest person might at least raise the issue of whether the “therapy” was responsible, but no; this too, we are told was the result of vaccinations. Only someone schooled in the worst of religious theodicy rhetoric could come up with such a twisted response.

McCarthy's understanding of science explains her frustration at the unwillingness of the mainstream medical community to even sit down with a group such as Defeat Autism Now! (DAN!), which “recover” children from autism on a daily basis। Of course they are operating with now fixed standard of what counts as autism and what counts as significant progress. Furthermore there is no attempt to compare autistic children on their program to those who are not. These things would be necessary for the scientific method. McCarthy, though, feels that she can put aside the scientific method for simple anecdotal evidence; who is to argue with the science of a mother fighting for her child. DAN! seems to be a good stand in for the
Discovery Institute One takes the façade of science, eschewing the technical ins and outs of the scientific method and then demand to be treated as a full member of the scientific community. If the AAP does not even want to send a representative to a DAN! conference it is not because, as McCarthy thinks, they are closed minded. As when one deals with creationism and intelligent design, the moment you even acknowledge them you have lost because you have then conceded to them the claim that they are some sort of legitimate alternative to the scientific method.

There is another side to McCarthy’s faith. While she talks about God and prays a lot there is an absence of any sense of authority. One never gets the sense that there might be certain obligations, in terms of her personal life or anything else, stemming from her belief in God. Her God is simply someone to whom one can turn to for support in moments of crisis and will and confirm for her that she is right. This explains not only the absence of any formal religious structure or theology but also her willingness to stand against science. Her faith has given her the confirmation that she is the barrier of some “special” understanding, beyond the purview of any authority, scientist or otherwise. For me this is neatly captured in the end of the book where she describes herself praying to Elias, the little boy I mentioned earlier who did not make it. She asks him to be her son Evan’s guardian angel. On what authority does she pray to a dead autistic child? Prayer and belief for McCarthy are simply other ways to feel good in this universe and to confirm that she is at the center of it.

To use an analogy from evolutionary theory, McCarthy serves as a “missing link” to explain how the mental deficiencies (Scholars are still debating if this mental deficiency is caused by genetics or some childhood incident and if it is curable.) prevalent in more liberal circles in our society could have ended up on the right as well, creating our modern religious fundamentalist empowered by the mental deficiencies of both sides. It does not take any great leap of the imagination to see how a creature such as Jenny McCarthy, created by modern liberalism, could evolve to take on more of the trappings of a traditional religion, becoming a creature with the narcissistic faith in one’s own greatness to wage war against science.

Sunday, May 3, 2009

Article in The Lantern

The Ohio State student newspaper, The Lantern, interviewed ASAN members Melanie Yergeau and Benzion Chinn regarding ASAN's goals of changing social perceptions of autism and enabling self-advocacy. The article noted that the Ohio State ASAN chapter will be a source of information for students and faculty alike.

Here are the interviewer's questions and Melanie's answers.

Can you briefly describe your organization for me?

We've just formed an OSU chapter of the Autistic Self-Advocacy Network. ASAN is different from many other so-called autism charities in that it promotes neurodiversity, or neurological diversity. Basically, many autism charities focus their resources and funding on finding a cure for autism. They take a medicalized approach toward autism and disabilities, viewing autism in terms of impairment and cognitive deficit. ASAN doesn't fall in this category. Neurodiversity falls within a social model of disability, where societal barriers and discrimination are more disabling than any so-called disability.

In our campus ASAN group, we recognize that people on the autism spectrum are individuals, first and foremost, and we also believe that individuals on the spectrum, though neurologically diverse, are not diseased, defective, nor in need of cure. Rather, autistic individuals need (and deserve) societal acceptance, services, and support so that they can equitably and equally participate in society. We also find that far too many non-autistic individuals have taken to speaking for autistic individuals in negative, hurtful ways.

Here's a better description of ASAN (the national organization), taken from their web site at

The Autistic Self-Advocacy Network (ASAN) is a non-profit organization run by and for autistic people. ASAN's supporters include autistic adults and youth, those with other distinct neurological types and neurotypical family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.

Can you explain Autism for someone who doesn't know what it is?

A common saying in autism communities is, "If you've met one person with autism, you've met one person with autism." Autism is considered to be a developmental disorder with a variety of behavioral manifestations: it's often referred to as a spectrum disorder. Five disorders are classified as ASDs, or autism spectrum disorders: Asperger's, Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), classic autism, Rett's, and Childhood Disintegrative Disorder.

Often, ASDs are divided into categories of high- and low-functioning. Personally, I don't care for this categorization. As labels, they're fairly insulting, and they're also not empirical, really. When someone calls me high-functioning, it's hard to know whether I'm being insulted or complimented. There's still a tacit assumption that I'm not quite functioning, I think -- or, sometimes I feel as though my disability isn't really acknowledged merely because I am sometimes able to mask it. Additionally, "low-functioning" sounds even more insulting. I think it leads to questions of what society in general values as "functioning" but also what society values as human. "Functioning" sounds technological and sterile, and I also think it create a hierarchy among autistics.

I tend to like ASAN's descriptions of ASD because those descriptions aren't focused on deficit or disease:

Some people debate whether ASDs are actually disabilities. I think this is complicated, and Benzion, or anyone else, for that matter, might give you a different answer. I view autism as a disability, personally, but one couched within that social model -- NOT a medical model. (In a way, it's kind of like reclaiming the word disability.) Some people might think I'm brain-damaged, for instance, because I'm autistic. My response would be as follows: if aspies and auties ruled the world, everyone else would be brain-damaged. I certainly need assistance in accomplishing certain tasks and so forth, but only because we live in a society that doesn't value universal design... and my neurological difference doesn't (or shouldn't) render my existence any less valid, any less human.

I should mention that ASAN is anti-cure. This stance tends to scare a lot of people: they tend to misinterpret it as anti-assistance, anti-accommodation, anti-services, anti-medicine, and so forth. It's not. ASAN views autism as a difference in neurological wiring, and, because of that difference (in comparison to those with typical neurology), autistic individuals need community support, equitable and affordable access to education and services, and so forth, definitely. However -- such services are in need of reform, especially those conceived under a model in which autism is viewed as a soul-stealer, etc. Any service that seeks to eradicate autism from an individual is not an OK service in my book. (To give an example of what I mean here: we could talk about stimming, which are stereotyped movements such as hand-flapping or finger-twisting. Autistic people might stim as a way to cope with sensory overload. Some forms of therapy try to stop stimming behaviors in autistic individuals, even though such actions are comforting and calming, because it looks "weird" or "abnormal." If the stimming behaviors border self-injury, then that's a different matter -- but stopping something just because it looks too autistic is ridiculous.)

Here's a recent PSA campaign ASAN released with the Dan Marino Foundation:

How long has the organization existed at Ohio State? (If I understand correctly, it's brand new, right?) What was the process of creating the organization? How long have you been involved and why did you get involved?

We formed the group early winter quarter, though we'd been tossing around ideas as early as the fall. We ended up becoming affiliated with ASAN after I joined ASAN's Yahoo listserv. I corresponded with Meg Evans, who coordinates chapters for southern Ohio, and Ari Ne'eman, president of ASAN, via email, and they gave me some really helpful advice on a letter I was writing at the time to President Gee. That letter, along with a letter Ben was writing, served as the impetus for this group, I think. Basically, Autism Speaks held a walk for autism last fall... and, well, many autistic people have problems with Autism Speaks as an organization. For one, the name of their organization is a misnomer. There aren't any autistics in their organization who hold any decision-making power. At all. As an organization that claims to speak for autistics, there certainly aren't any autistics speaking.

What troubled us about this walk, though, were President Gee's remarks. I knew what to expect from Autism Speaks because I'm familiar with their fundraising tactics as an organization. But as I read and viewed and heard reports about the walk, I was dismayed. For instance, President Gee claimed, per a Lantern article, that autism should not exist. I fully recognize that President Gee, as with many people who want to help autistic individuals, didn't necessarily understand the political implications of that statement at the time, and he perhaps didn't realize the debates occurring in the autism world (and there are MANY debates). Nonetheless, because he is the president of our university and because he made these controversial statements about autism, I had some concerns.

Here's a link to the letter I wrote:
Kristina Chew wrote about it in her old blog, Autism Vox:

President Gee did respond, which was nice. A very vague letter, but I was quite glad for the response.

I should here mention that we don't see our organization as the anti-Autism Speaks. Rather, we're an alternative organization. We're especially concerned with self-advocacy and issues of representation, issues of speaking for versus speaking as or speaking with. In fact, per ASAN, the leadership roles in this group need to be occupied by autistic individuals. Hence Benzion and I as co-chairs.

We certainly welcome people across the spectrum to join, as well as people who are not autistic. We've also had a lot of support from Aspirations, which is a social-vocational support group for people on the spectrum. It's run through the Nisonger Center here at OSU. Also, our faculty advisor is Cynthia Selfe, an English professor who does a lot with digital media. We've had some help from the disability studies program in publicizing this as well.

How many members do you have?
I'm not sure yet! Hopefully we'll know on Thursday. We currently have four officers and a faculty adviser. We also have lots of people in the Columbus community who are involved and/or have expressed interest.

What activities does your organization do? How do you support the autistic community? What do you hope to accomplish at Ohio State?

I doubt the OSU community realizes there are students, faculty, and staff at OSU who are on the autism spectrum, or what that means, really. There is certainly need for a self-advocacy organization. Part of this initial meeting will involve brainstorming: We are very interested in changing the local autism climate in central Ohio, especially on campus. In forwarding a neurodiverse approach toward autism, we wish to respond persuasively, tactfully, and logically to campus-related movements that support medical paradigms. We hope to have those involved in the neurodiversity movement come speak at campus at some point. We really want to start a dialogue, complicate people's views of what autism is, of who autistics are.

I know it is a self support organization, do you have any autistic members? What experience do you personally have with autism?

I am an Asperger's autistic. On the web, we're called "aspies" or "auties." I also have family members on the spectrum, and have autistic friends in Columbus and beyond. My research is concerned with digital media composition and the affordances it might lend to autistic writers. I teach classes in the Department of English, and my focus areas are digital media studies and disability studies.

I know that one accusation that might come our way is that we, as so-called high-functioning autistics, presume to speak for all other autistics. This isn't the case. There are many people considered low- or middle-functioning who are involved with ASAN and other national and local groups allied with the neurodiversity movement. We're "speaking" with a large group of people. I can't presume to know that all autistics feel similarly. I only know that a whole lot of us do on certain key issues, and our perspective needs to be heard.

A few more clarifying points...

At a couple intervals, I said that ASDs are considered disorders. I want to emphasize the passive construction in that sentence (I'm a grammar nerd, yes), because I'm afraid it might not be clear otherwise. ASDs are considered disorders, or, phrased in active voice, other people consider ASDs disorders. I don't see autism as a disorder. But most non-autistic people do. My view is similar to Benzion's, as well as ASAN's description. Autism is really a question of who defines what normal is. We're different, so we're therefore disordered? In the words of the interwebz, WTF?

Finally, a point of semantics: I say autistic person rather than person with autism. ASAN and other neurodiversity organizations do this as well. Pro-cure autism organizations don't do this... they tend to say person with autism. Here's why. If you're for a cure, you want to believe that your child is a normal kid trapped inside autism -- as in, if you remove that pesky autism thing, lo and behold, normal little Johnny Junior will magically appear! It's wrapped up in a magic pill mentality. Additionally, some people prefer people with autism because they want to emphasize the personhood or humanity of an individual, which is admirable, and/or they don't want that person wholly defined by autism, which is less admirable, I think.

Neurodiversity groups use autistic person because they believe that autism is a matter of brain wiring. If you're born autistic, you'll die autistic. Changing someone's whole neurology is changing someone's whole person. (Jim Sinclair wrote a good, short piece on the problematics of person-first language.) Autism is central to an autistic person -- it isn't the afterthought that with suggests. As Jim Sinclair has noted, we don't categorize gender as "people with femaleness" or race as "people with whiteness" or sexual orientation as "people with bisexuality."

Saturday, May 2, 2009

Episode Two of Prism Vox

One of the very cool aspies that I had the privilege to meet at our first meeting Thursday night was Noranne. She has posted episode two of her podcast Prism Vox. She is certainly a lot of fun to listen to. In this podcast she lays into Dr. Tony Attwood for involving himself with the group Families of Adults Affected by Asperger’s Syndrome (FAAS). Warning, the content of her podcast may not be suitable for some. Admittedly there is a fair amount of swearing, something that I am not a fan of, but to Noranne’s credit it never comes as something dirty. It is just her natural way of speaking. Keep up the good work Noranne.