Turning Off All Social Networking Sites for a Day: How Not to Relate to Autism

In the latest round of presumably well-intentioned neurotypicals trying to raise money and awareness for autism while completely not understanding us, today, November 1, has been designated Communication Shutdown day. The idea is that for one day people should not use their social networking sites such as twitter and facebook. This is supposed to help you understand what it is like to be autistic.





 I have a hard time believing it, but I do not see Autism Speaks listed as one of the sponsors of this one. On the other hand, an organization such as the Autism Society, one that I thought had better sense, seems to be on board. To be fair, it is only the Colorado branch of the Autism Society. I assume there is some sort of political backstory here, but I would call upon the national office of the Autism Society to denounce this effort and remove the Colorado branch (or at least the individual culprits).

There is an irony to all of this. Internet communication is probably the closest thing we have yet to invent to approximate autistic communication. The internet does not allow for effective communication of emotion. As such, it forces people to communicate without focusing on emotions. For this reason, as it should be clear to anyone who has actually spent time listening to autistics and not simply preaching about them, autistics have been able to use the internet quite effectively. I would even go so far as to call the internet with its social networking sites the larynx of autism, giving us the voice that most autism organizations claim that we do not even have.

If you wish to understand autism, do not get off facebook or twitter for the day. On the contrary, go around with your computer and cell phone and communicate solely through text messages. Autistics are capable of communicating. They communicate differently and you just need to learn how to listen.

If you are looking for a sane perspective on autism I suggest you check out Rethinking Autism and their featuring celebrities actually talking alongside autistics.

Does God Hate Deaf People? Toward New Bible Based Bigotry

In addition to the black civil rights movement, my own Asperger advocacy makes use of the models of deaf advocacy and the gay rights movement. Both are examples of groups that have been able to bring mainstream respectability to something traditionally looked down upon by society. I admire the gay rights movement in that they were able to get themselves off the listing as a psychological illness. The deaf community, going back even to the nineteenth century, has been successful, through the creation of sign language, in forming a deaf culture and by so doing has helped redefine how we think of disability, creating a social model of disability. Once you have a culture with language, literature, and artists then you can longer be defined by what you lack, say hearing, and can insist on being treated like every other culture. Furthermore, the deaf community has in the case of cochlear implants been able to fend off attempts at "curing" them even from the mainstream medical establishment.

In advocating for myself and others on the spectrum, my goals are first to get away from the medical model used by groups such as Autism Speaks, where autism is a disease to be cured, and move toward a social model of disability, where autism is viewed as an alternative and equally valid way of processing information and dealing with the world. This is neurodiversity. In the long run, I would hope to see certain elements of the autism spectrum, like Asperger syndrome, taken off the diagnostic list and turned simply into another social and cultural group.

In talking about neurodiversity with people, I make frequent use of both the deaf and gay models. For obvious reasons, when I am in more conservative company I shy away from talking about gay rights and focus more on the deaf example. Who would object to the idea that being deaf is a culture no different than Spanish, Irish, or Jewish, that one could create a perfectly functional society without the use of hearing and that there is nothing wrong about being deaf that is in need of being cured? I was mistaken in this assumption.

I was recently talking to a religious person about Asperger syndrome, using the deaf example, when the person responded that being deaf went against nature; God created people with ears so, therefore, lacking the use of one's hearing was a defect not intended by God. I pressed the person, arguing that hearing is not necessary for living one's life and that perhaps human beings will evolve away from being dependent on hearing. (Bats still have eyes even though they rely primarily on a biological sonar to see.) At this point, that person retorted that the Bible spoke about deafness as an impairment. I let the conversation end by noting that I was not talking theology and that, under a secular system of politics, it is irrelevant. I would have liked to continue and ask the person whether they were willing to follow through with the implications of their views. Should we allow deaf people to do such non-Bible sanctioned activities as voting, serving on juries, or even as witnesses? What business do deaf people have in thinking they can create their own non-sound-based language? Was it among the languages used after the Tower of Babel? Might all this deaf culture really be a secular liberal plot to undermine our Bible-based traditional aural values?

I am used to the Bible being used to object to gay rights. Apparently, there are those who might consider using it against the deaf. I guess we should be grateful that the issue of deaf rights has flown below the radar screen of certain people otherwise we might end up with a defend the sanctity of aurality movement.

Social Relationships and Anti-Asperger Bigotry

Growing up as an Asperger was not easy; long before the concept of Asperger syndrome crossed my path I knew that I was different and that I lived in a society clearly not designed with me in mind. The fact that I stood out made me a target for bullying. More frustrating was the official bias inherent in the educational system. Consider the report card question of whether a child "plays well with others." Inherent in this question is the assumption that relating to other people is of great value. Our entire educational structure is premised far more on "socializing" than on the dissemination of information. Not that there is anything wrong with being social, but this approach to education is rooted in a neurotypical bias. My grade school report cards never asked if I was reading on my own for pleasure, if I pursued research into topics of interest outside of formal school assignment, or how well I critically analyzed texts. So while my neurotypical classmates never were faced with an existential crisis or even the friendly well-meaning suggestion that they attempt to operate in a more information based mode, I was plagued by the fact that I did not relate to people in the same way that others did. Was there something wrong with me because I was more interested in memorizing historical facts than with "playing well with others?" Was not the point of school to cram as much information into one's head as possible?

One could go so far as to say that any discussion of friendship reveals a neurotypical bias. My life would have been a lot easier if, in kindergarten, we would have been read, in addition to the books about friends, books about children who are happy doing stuff on their own, living in their own heads, and occasionally coming together with other children to achieve mutually beneficial results in keeping with ethical universal law. Perhaps the teacher could be sensitive when talking about friendship and point out to the class that this was one of many equally valid lifestyle choices.

I recognize that such "civil rights reforms" are unlikely to happen. It is not practical for society to rethink such basic features as social interactions just for my sake. Neurotypicals are not out to discriminate against me. The fact that I am, in a very real sense, harmed by the fact that our society was not constructed with someone like me in mind is incidental; you could say that I am collateral damage. Even if society wished to grant me such "civil rights" they would be unable to do so as they would then be faced with having to do the same for every other outsider group. Perhaps the deaf community would like to eliminate the societal veneration of speech and music as they implicitly relegate deaf people to an inferior status? How about eliminating sports such as basketball and football so as not to imply any lack of ability on the part of those in wheelchairs?

I have made my peace with making concessions to the values of neurotypical society even if I struggle precisely where to draw lines. One could say that I am engaged in a dialectical discourse with social relationships. I do actively seek out other people and attempt to form relationships with them. I am even now pursuing a romantic relationship. Granted, I tend to put a distinctively Asperger spin on these things, focusing on talking to people as opposed to hanging out with someone simply for the sake of being with them, though I am learning, bit by bit, to appreciate even the later. The one thing that I insistent on is that there is no inherent moral advantage to social relationships; the fact that I pursue these things is simply a matter of my personal convenience. In practice, this means that no has the right to criticize me for failing to act in accordance with neurotypical social standards or even for consciously ignoring them; if there is nothing inherently valuable about neurotypical social behavior then it is my right to follow it, not follow it or adapt it to suit my own purposes as I see fit. To say that neurotypical social behavior is somehow "better" than Asperger behavior would, of course, be bigotry.

I struggle with what I would do if I ever had a child on the spectrum; to what extent would I push such a child to be social? I think it would depend a lot on the social climate. I hope that my children will enter a world that is more accepting of Asperger behavior than the world that I grew up in; in such a world there would be less need to adapt to neurotypical standards. I suspect I will end up going through the motions of telling my children to be more sociable in such a way that they will feel free to ignore me as it suits them.

Articles of Interest

Melanie talks about the recent protest against Autism Speaks at Ohio State. I was involved in the early stages of this event. I really miss the people over at our ASAN chapter.


Also on the Asperger front, Claudia Wallis writes in the New York Times about the strong possibility of Asperger syndrome being removed from the new edition of the psychiatric diagnostic manual to be merged with P.D.D.-N.O.S as autism spectrum disorder. The article goes on to quote Ari Ne'eman as supporting the view that autism is one large community. He views his identity as being "attached to being on the autism spectrum not some superior Asperger's identity." I have personally debated this issue with Ne'eman. My position regarding disabilities in general is to make a division between those who are at a baseline of physical and mental capacity and those who are not. As I see it these two groups have different interests, require different things from society and must therefore operate within different models. For those who are functional the necessary model is that of the minority group. What is needed is not charity (otherwise known as aid) from society, but an understanding that such people have a different though equally valid mode of living. This would apply to someone like me or my friend in a wheelchair, who is completely self sufficient. Now this type of disability model would not apply to those who are disabled in the more traditional sense. Such people would require charity from society. Hopefully this charity would be used with the long term goal of helping as many people as possible to move out of the non-functional disabled category to the functional category. I made the argument once that to call a group the Autistic Self Advocacy Network means that you are dealing with only those who are actually capable of engaging in self advocacy. Self advocacy on behalf of other people is a contradiction in terms. It is amazing how this type of basic tautology apparently could prove to be offensive to some people.


Also in the New York Times, Kenneth Chang has on article on the rise of modern day creationism in the Islamic world. The article points out that because Islam does not share the Genesis creation story with Jews and Christians there has been far less at stake for Muslims to stick with a young earth model. I come to the issue from a medieval perspective. In the Middle-Ages the controversial creation issue was not evolution, but the Aristotelian claim that the world existed from eternity. Muslims were far more likely to be willing to go along with the Aristotelian position because they did not have to defend Genesis. (For more on this topic see Taner Edis writing for the History of Science Society.)


Charles W. Hedrick writes in Biblical Archaeology Review about the continued controversy over Morton Smith's claim to have discovered a different and potentially far more provocative version of the story of the resurrection of Lazarus in the Gospel of Mark. Smith was probably the most colorful figure in the field of twentieth century Jewish studies. He was a former Episcopalian minister who turned Talmud scholar.

Finally Raina Kelley, in Newsweek, takes a swing at the film Precious and the growing genre of underprivileged children redeeming themselves and finding a future through the medium of writing. Kelley writes from a non-humanities perspective, arguing that mathematics is a field far more likely to allow a person to enter the middle class, but there is an inherent bias among writers to push their own profession. This is not to say that Kelley is against the humanities; there is just an acknowledgment that to write requires actual training and, contrary to myth, does not spring spontaneously from the unlettered heart. I take an Aristotelian attitude toward the humanities. The humanities have no utilitarian value and are therefore for those who do not need to make a living or for those, like me, willing to live in poverty. They do serve a purpose, though, and are necessary for anyone wishing to play an active role in society.

Mental Capacity and Autism Rights

I would like to clarify an issue from my earlier post on autism rights. I argued that the concept of rights, by definition would only apply to those on the higher end of the autism spectrum:

Any discussion of rights, by definition, only applies to people who have reached a certain base-line of intellectual self-sufficiency. So autism rights, by definition, only apply to autistics on the higher end of the spectrum. If you are capable of reading this piece and understand what I am saying then you can rest assure that you pass the threshold. A completely different discourse would be needed for those on the lower end of the spectrum, one based on care and charity.

This statement has caused offense to a number of people and I apologize for that. Part of the problem is that I am proceeding from a very different understanding of rights which causes me to use the word “right” in a different fashion from that of other people. Most people, coming from the perspective of modern liberalism, use rights in a very open-ended fashion. Rights are supposed to make someone human, they are meant to grant people meaning in their lives and solve their problems. For example, if homosexuals find themselves unable to marry their partners they are being robbed of some right. Or if blacks are unable to advance in the same proportion as other groups it must be because some right has been violated.

For me, rights are something more specific. When I think of rights I think of life, liberty, and property. An extension of these rights, and a necessary protection for them, is the ability to take part in government. By this I mean the right to engage in such actions as running for political office, voting in elections, taking part in the justice system by serving on a jury, and serving in the military. To safeguard all of these things we possess civil rights as weapons in our arsenal. There are two particularly important ones that should be mentioned. First, there is our freedom of speech, which protects us on a day-to-day basis. Second, of greater importance though more for extreme situations, there is the right to bear arms. Private citizens have the constitutional right to possess the sort of firearms necessary to wage, if need be, an armed insurrection against the government.

The right to life belongs to all human beings no matter their mental capability. This right, while important, is, for the most part, outside of our political discourse. I have not heard anyone suggest that people on the autism spectrum be put into cattle cars and shipped off to gas chambers. Furthermore, this right is passive; it does not allow you to engage in anything proactive. Other people are not allowed to murder autistics, but what can autistics do?

There is the issue of the long-term elimination of autistics in the event that a genetic test can be designed for fetuses. For those who view rights as something that belongs to groups, this becomes a right to life issue. I view rights as something that belongs to individuals and I believe that fetuses do not count as human beings, certainly for the purpose of having rights. Because of this, I recognize that we do not have any means, through the government, to stop mothers from aborting autistic fetuses. All we can do is wage a social campaign to convince people to not abort autistic fetuses. I have a friend who point-blank told me that she would abort a child that she knew was going to be autistic. She would not object to having an Asperger child like me, but she grew up with a traditionally autistic sister and she would not wish to go through that experience as a parent. I can challenge this friend whether she can say she really loves her sister; if she really loved her sister she would rather have gone through all the difficulties she had than not have had the sister at all. I suspect this will be a losing battle and we may, as tragic as it may be, see the elimination of autism. I support personal autonomy and I am willing to fall on my sword to protect this ideal; this is what it means to be an idealist.

Moving away from the right to life, we are left with the rights of liberty, property, participation in government, and civil rights. In a sense, liberty is passive; you are protected from being wrongfully imprisoned. That being said it also includes the active right to make decisions in one’s life, to pursue one’s own good in one’s own way as long as one does not interfere with the liberties of others. The moment you bring active rights into play you have to consider who has the mental capacity to pursue such rights. J. S. Mill said point-blank, at the beginning of On Liberty, that nothing he was about to say was meant to apply to children, the mentally handicapped, and, for argument's sake, savages living outside of civilization. 

When I was a child, as much as I thought it was unjust, my parents ran right over my “rights” to not bathe, stay home from school, stay up beyond their arbitrary bedtime and not eat my vegetables. They even spanked me and put me in time out without the benefit of a trial by my peers. (While this may sound childish, I was the sort of child with the political awareness to try for such a constitutional approach.) So should autistics have the liberty to make personal decisions in their lives like whether they should be institutionalized, allowed to live at home or by themselves? My answer is that it depends on the ability of the individual autistic. I am an adult and I have the mental ability to understand and make decisions regarding my liberty and others can understand what these decisions are. As such, I should have the right to exercise these liberties and my decisions about my personal liberties should be respected. If my parents wished to commit me to an institution or force me to come home and the government went along with this it would be a wrongful violation of my liberty. My parents would not be able to use the argument that I am an Asperger since that is a legitimate mode of thinking; nor could they argue that I do not eat enough vegetables, go to bed at an early enough hour or use language that they did not approve of as these would also be legitimate lifestyle choices. Now there are people on the autistic spectrum, even many adults, who are not capable of making such decisions. Such people cannot in any meaningful sense be said to possess liberty and should be left to the care of their legal guardians.

The same applies to the higher rights such as participation in government and civil liberties. All of these things, as active liberties, require that an individual has the mental capacity to make a meaningful decision. It is not even enough that a person says the words, there has to be some sort of intent behind them. Furthermore, those intentions must, by some means, be able to be communicated to society at large. A person who cannot do this is doomed to being a ward of society, without the ability to take on the role of full citizens.

A useful example is that of the deaf. Today it would sound completely ludicrous to say that a deaf person cannot be a CEO of a company, and serve in the military. (There may be restrictions about on the deaf serving though I doubt they would stand up against a determined lobbying effort particularly if resources were offered to get around the disability.) Who would object to a deaf person becoming the president of the United States? That being said, in the nineteenth century there were few resources available for deaf people and society lacked the ability to effectively educate them. For all intents and purposes, this doomed the deaf to a lifetime of being wards of society, of little use to anyone, and unable to take on the role of active citizens with all the rights that it entails. Now, because of advances in technology and in education, the deaf are capable, just like everyone else, of being active citizens and society has been blessed with this beautiful new deaf culture arising in its midst.

I see the same thing for the autistic community. Right now, there are many autistics, particularly at the "higher end of the spectrum," perfectly capable of being fully active citizens. It is important that such people be supported and that they are allowed to fully take advantage of their rights to make personal decisions, to handle property, to take an active role in government, and to use their civil liberties. That being said, there are many on the autism spectrum, particularly on the "lower end of the spectrum," who do not have this ability. For such people, it is meaningless to talk about them having rights. This is not to say that they should be thrown to the wolves or refused medical care. They are wards of society and must be cared for as such. I hope that with further improvements in technology and education we will find more and more people on the autism spectrum with the ability to take on the role of citizens and will no longer be wards of society. This will make for a stronger and more vibrant autistic community and will benefit society at large.

In Defense of a Traditional Understanding of Rights: A Response to Ari Ne’eman

This past April Ari Ne’eman spoke at the NFB Disability Law Symposium. His speech was a remarkable display of insight into not just autism and disability issues but basic political theory as well. It is certainly very rare to see someone who can cover the full range from theory to practice. It is, therefore, with the greatest respect, that I offer a few words of disagreement. Not in terms of neurodiversity but simply on the grounds of political theory in the hope of generating further dialogue on the nature of rights and their application to people on the autism spectrum. Like Ari, I strongly support the association of autism and the wider disability cause with that of the civil rights movement and see this as the basis of neurodiversity. In particular, I take the gay rights movement as a model for my autism advocacy. Up until a few decades ago, homosexuality was labeled as a mental illness. Today it is accepted by most of society, in some form or another, as an alternative lifestyle. I hope that one-day autism will gain similar acceptance.

Ari asks the question as to the nature of rights and where rights come from. He first raises the Enlightenment option in which rights come from a social contract. Ari objects to this for two reasons. The first objection is that a state of nature has never existed and no one has ever signed any contract to place themselves under a government. One could also suggest that a contract is signed with God, but that is also a problem in a society, such as ours, that recognizes atheism as a legitimate partner in our political discourse. His second objection is that this notion of rights is very narrow and only covers negative rights. You are protected from people doing things to you but you have no inherent right to pursue freedom in a positive sense. Following Alan Dershowitz, Ari argues that rights come from a historical recognition of wrongs having been committed to a specific group. For example, the gay rights movement has succeeded in making the case to society at large that homosexuals have been mistreated and that therefore it is necessary for society to actively recognize the gay community as a wronged group and actively grant them tolerance.

As a supporter of an “Enlightenment” understanding of rights, I would like to offer an alternative understanding of rights and some thoughts on the place of autism in this system of rights. Let me first respond to the issue of the social contract. For me, the social contract is not something signed in some mythical time in the past when man lived in a state of nature, but something that we sign every day with each other. There are people who would like to persecute homosexuals, ban them from the public sphere and even cause them physical harm. Why should I care, I am not gay? The reason is that many of the same people who want to harm homosexuals and stop them from living their alternative lifestyle also want to persecute me as a Jew and stop me from living my alternative, Jesus-free, lifestyle. This suggests an alliance simply on pragmatic Hobbesian grounds. I will agree to let homosexuals live their non-hetero lifestyle if they let me live my Jesus-free lifestyle. This is ultimately codified in a society-wide cease-fire agreement known as the Bill of Rights where we agree that everyone is going to be granted a list of rights and protections and we forgo the chance to stick it to our group of choice.

I think the real important difference between Ari and me is over the issue of how broadly to draw the boundaries of rights. I believe in a “right” (a deal that I am willing to make) to life, liberty, and property. Liberty, in this case, being the right to pursue one’s own good in one’s own way as long as one does not interfere with the liberties of others. As John Stuart Mill argued, this notion of liberty could only work if one limited it to direct physical harm. The moment you try to apply liberty to a wider notion of harm you are faced with the problem that, when living in civil society, every action affects other people and causes some form of harm. For example, it is of critical importance that we do not allow my Christian neighbors to kick me or my gay friends out of our homes despite the fact that our presence and our alternative lifestyles may be causing real psychological suffering. The moment my Christian neighbors can bring their psychological suffering into play then they get, in essence, a blank check to persecute us and the whole notion of rights, ceasing to have any meaning, collapses in on itself. As part of the liberal tradition, our response has to be that as long as my gay friends and I have not physically harmed anyone we are protected and we are free to live our alternative lifestyles to our heart’s content.

Ari, along with modern liberalism, fails to hold to this narrow understanding of rights and instead takes a broader more abstract understanding of rights. This leads to the ultimate betrayal of the liberal tradition when he places the source of rights within the context of a discourse between minority groups and society. As long as the issue of rights is only one of physical harm then, by definition, rights can only apply to individuals. The moment rights are something belonging to groups then they are no longer something belonging to individuals. Instead of a universal brotherhood of individuals comes the petty tribalism of different groups set against each other.

To bring this back to the realm of autism, we can agree that right now we on the autism spectrum are getting the worst of both worlds. We operate within a political discourse of group identity yet society does not recognize us as one of these groups. This leaves us in a situation where we are not being granted the sort of rights that other groups take for granted. For example, let us imagine I was the parent of a gay child. Now this child, being different from other children, may find himself in a difficult situation, unable to make friends and subjected to various forms of harassment. Our societal discourse would support my insistence on having the school protect my child, beyond even simple physical harm and allow him to be his own special person. Society will not tell me that the problem is my child and that my child needs to change to become more like other children. In our present discourse, the same does not apply to children on the autism spectrum; we are being told that the problem is us and the solution is for us to change to conform to society.

I see two possible roads ahead of us. The first, which I would prefer though I admit may not be practical within our present discourse on rights, is to embrace a traditional more limited notion of rights. This would take away certain rights from us, but these are not rights that we, in practice, ever had in the first place so it would not be any great loss. While we will not have these rights no other groups will have these rights either. This would be helpful, beyond simple Schadenfreude, in that this will allow us to turn around and make some deals with these same groups for our mutual benefit. Right now the gay community has no reason to help us as we have nothing that we can offer them. Now get rid of gay rights and open up gays to everything short of physical harm and we have a different story. I will agree to accept and support the gay child in exchange for support for my autistic child.

The second option, which is most likely the more practical option, is to throw our hat into the game of expansive rights along with every other group. While I do not personally support such a view of rights I can go along with this method of advocacy without hypocrisy. Just like a liberal, pocketing a Republican tax cut, I have no problem with playing the system to my own benefit. If other groups are going to benefit from this expansive notion of rights then I certainly want my group to be at the front of the line. This could even support the case for a narrow view of rights. I believe that the modern liberal expansive notion of rights is a Ponzi scheme that can only work as long as only a few groups try to cash in. Let every group come and hold society hostage to their every whim and the whole system will collapse and there will be no choice but to resort to the more restrictive understanding of rights.

I am perfectly willing to pursue either option. In truth, these two options can exist side by side. One can attack the modern liberal expansive notion of rights and make the case for a more restricted notion of rights. At the same time, while we wait for society to come around, I would encourage autistics to take full advantage of the current discourse on rights. I might even say abuse it to the fullness of our imagination.

As an addendum, I would like to briefly respond to two obvious objections to this piece. I readily admit that my method of thinking has a strongly “Asperger” flavor to it. I focus on individuals at the expense of society and I take a rather pragmatic attitude toward social relationships that does not leave much room for “empathy.” The most obvious objection to my argument is that I am “cold” and “heartless.” I do not see this as a problem. On the contrary, I see this as an example of the strength of “Asperger” thinking. Aspergers are in a unique position to appreciate the distinction between physical and non-physical harm. One of the weaknesses of neurotypical thinking is that it is so wrapped up in social relations that the two become hopelessly mixed together. I believe that being on the spectrum has helped me be a better liberal and supporter of the free society. I would also like to defend my use of the term autism considering that much of what I say would be problematic if applied to many on the spectrum. Any discussion of rights, by definition, only applies to people who have reached a certain baseline of intellectual self-sufficiency. So autism rights, by definition, only apply to autistics on the higher end of the spectrum. If you are capable of reading this piece and understand what I am saying then you can rest assured that you pass the threshold. A completely different discourse would be needed for those on the lower end of the spectrum, one based on care and charity.

Panel Discussion on Disabilities at Ohio State

This past Wednesday I participated in a panel discussion on disabilities and campus life sponsored by the Mount Leadership Society. The Lantern did an article on it titled “Students with disabilities highlight resiliency, optimism.” I would like to thank the Mount Leadership Society for hosting such a wonderful event and the Lantern for covering it. As one of the panelists I am featured in the article:

Benzion Chinn, a graduate student in the History Department, had the group laughing at some of the bizarre situations he's gotten into because of his Asperger's syndrome. Once, he said, police were called on him for the exaggerated motions he was making while speaking. He was only asking his professor a question about his test, but someone had mistaken his demeanor as threatening.
He said he has difficulty processing social information, such as body language. "So when people are silent and I am just talking on and on about 16th century religion wars, I assume that people are really, really interested," Chinn said. "On the flip side, what I am very good with is analytical forms of information, particularly text." He joked about how convenient this is for all the reading he has to do in the pursuit of his Ph.D.

For a more detailed discussion on the police incident see here.

I Do Not Like Autism Speaks Any Better in Spanish than I Do in English

I enjoy occasionally watching Spanish television on Univision. While I have trouble with spoken Spanish I can follow along with closed captioning. I was watching Univision today and to my surprise they had a commercial for Autism Speaks. According to the commercial your child stands a 1 in 600,000 chance of being hit by lightening but a 1 in 150 chance of having autism (grasp of horror).

Autism Speaks is an advocacy organization that operates on the autism as an illness model. While there may be legitimate reasons for this when dealing with low functioning autism this becomes a problem for people like me who have Asperger syndrome. I do not view myself as being, in any way, mentally challenged. If anything it is people who do not have Asperger syndrome who are mentally challenged. (Not to worry I know many fine neuro-typicals. Being a neuro-typical is something that can be overcome with the right amount of dedication) I have chronicled my problems with Autism Speaks in the past. More recently Autism Speaks has started a group on campus. This information was passed on to me by a friend who put me in contact with the faculty member sponsoring them in the hope that I might offer some balance. No one told me that I was actually supposed to be nice to this person. So I explained to this faculty person that I viewed joining Autism Speaks in the hopes of changing it as the equivalent of a gay person joining a conservative Christian group in the hope of changing it. No one told me that this faculty person was coming into this situation completely unfamiliar with the lead with the helmet style of speaking that is a trademark of Asperger syndrome either.

Because Autism Speaks in now on campus, my friend Melanie is starting an alternative group to correct some of the imbalances perpetrated by Autism Speaks and has recruited me as her second officer. (Official groups at Ohio State require at least two officers in addition to a faculty sponsor.) We are working in tandem with the Autistic Self Advocacy Network (ASAN).

A Letter to President Gee

I have previously posted on my reaction to the Autism Speaks walk in Columbus. I would to therefore share a letter written to President Gordon Gee, who spoke at the event, on the matter. The author of the letter, Melanie Yergeau, is a friend of mine and fellow member of the Aspirations book club. She takes a similar line to mine. She does a great job at tearing Gee apart, but doing it with a smile. I would like to thank her for her kind permission to post this.


12 November 2008

E. Gordon Gee, President
205 Bricker Hall
190 North Oval Mall
The Ohio State University
Columbus, OH 43210

Dear President Gee:

I am writing in regards to statements made at the Autism Speaks walk held on campus this past October 12. My name is Melanie Yergeau, and I am a second-year Ph.D. student in English. My area of focus is disability studies, and I have Asperger's Syndrome, a form of high-functioning autism.

Ohio State has a small but burgeoning community of autistic students, and many of us were dismayed at your call to "cure" autism during the event on October 12. Though several autistics from our campus group were in attendance at the rally, I was not. As with many others on the autism spectrum, I do not feel that Autism Speaks speaks for autistic individuals. I was, however, saddened by The Lantern's emphasis on one of your remarks at the rally, during which you claimed, "It [autism] should not exist." Many—and I would argue most—autistics do not want to be cured. Both high- and low-functioning individuals on the spectrum understand autism as their unique way of perceiving the world (e.g., Amanda Baggs, D.J. Savarese). Autism is a part of who I am: remove the autism and you remove me.

I have waited a month to send this letter because, I admit, I am so very close to this subject. However, a non-autistic Master's student in social work suggested that you might not realize that autistics do attend Ohio State, that more of us enter the university everyday. And in further contemplating this, I realized that perhaps you have been thrown into this autism debate without realizing that it is, indeed, a debate.

Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger's adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.

As I read articles and listen to reports of the rally from my saddened autistic friends, I've noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.

I have written this letter to you personally because I would like to think that the president of the university I attend might not refer to autistics as pitiable people in need of cures and able-bodied heroes, but rather as full and contributing members of the university community. Only when we acknowledge that the conversation on autism must, of necessity, include autistics can we begin to help all those affected by autism to lead productive and fulfilling lives. It is my hope that you might not only speak as a university president on issues of autism, but as a role model for those within the autistic community.

Sincerely,

Melanie Yergeau
Department of English
421 Denney Hall
164 W. 17th Ave
Columbus, OH 43210
yergeau.1@osu.edu

A Worthwhile Article on the Disabled and the College Campus

In light of my earlier discussions of Asperger syndrome in the college environment and the issue the disabled as members of a minority group, I would like to present the following article by Deborah Kendrick, which appeared the other day in the Columbus Dispatch; it offers an interesting perspective on this line between being disabled and a minority, being like everyone else but just having a "different" mode of operation that needs to be taken into account by the general society. Ms. Kendrick describes her experience, as a blind person, going to college in the late 1960s. She did not have any form of disability support from her college. In fact her ability to go to school hinged on her ability to convince the college that she was not “disabled,” that despite the fact that she was blind she could operate more or less like other people and would therefore not be a problem.

Rather than simply lament how difficult her situation was and the need to grant those with disabilities special entitlements, Kendrick calls for a renewed sense of responsibility to match what they are given:

Students with disabilities are like others in their generation, and the sense of entitlement often towers above the sense of responsibility and accountability.
Students with disabilities need to learn about more than astronomy and Shakespeare. When rights are aligned with responsibilities, the campus will be a better training ground for life.

Being Part of the Disabled Community Versus Being a Member of a Minority Group (Part III)

(Part I)
(Part II)

The differences separating me, as someone on the high functioning end of the autism spectrum, from those on the lower end of the spectrum (and their parents and advocates) was starkly illustrated to me at a recent Autism Speaks Walk in Columbus. I attended the event as a member of Aspirations, an autism support group here at Ohio State. I assumed that the event would be a show of unity and support for autistics across the spectrum. The event was held at the Schottenstein Center, the basketball arena for the Buckeyes, and over nine thousand people attended. I loved the whole atmosphere and being there with my friends from Aspirations. My joy at being at this event lasted up until the moment the first speaker started talking and went down from there. I had to sit in the stands and listen as a parade of people got up and spoke about autism, how it is an “epidemic,” and a “disease” that needed to be “cured.” Sitting in the crowd and listening to these speeches, I felt like I had been used and taken advantage of. This was not what I came for. Imagine a black person going to a civil rights rally only to find himself being called an N-word and hearing that his blackness was a "disease" that needed to be cured.

Believe me, I recognize the incredible difficulties that parents of low functioning autistic children must go through. For that matter, I know that I was not an easy child for my parents to raise. I am sure my parents would have benefited from having someone to explain what was going on with me and to offer support. And parents of autistic children need all the help and support they can get. But that is the point; help and support is not a cure. Even in terms of support, though, there are differences. What my parents needed was not a medical professional to make me “functional” or to act like a “normal” person. Their needs were not all that different from that of parents of gay children. They would have benefited from having a professional tell them that yes I was “different,” that this was not a bad thing, that it was not their “fault” that I was who I was and that there was nothing they could do to “fix” me. All they could do was accept me for who I was, to try to understand my alternative way of life and be the advocates and the support I needed. (All in all, I think my parents did a pretty good job without any professional help.)

As someone with Asperger syndrome, I do not see myself as disabled in any fashion. On the contrary, I thank God every day for giving me the gift of Asperger syndrome. I look at other people and I wonder how they live such dull neurotypical lives. My life may be lonely much of the time but it is certainly interesting. If you offered me a "cure" for my Asperger syndrome I would laugh at you and throw it in your face. More than that, though, the very notion that I would need to be "cured" is an insult; it implies that my way of life is somehow less than other's peoples. This is no different from those who would suggest that homosexuals should be "cured."

Ultimately, there were different interests at stake at this Autism Speaks Walk. It was organized primarily by parents of low functioning autistic children. For them, autism is a disability that needs to be cured. For me, and others with Asperger syndrome, autism is an alternative way of life. These interests directly conflict with each other; the mere existence and public visibility of each side harms the other. Having low functioning autistics in play is detrimental to me because it opens up the charge that I, as an autistic, am disabled as well. Whether it is fair or not, I am tainted by the mere association. On the other hand, while I may be useful as an advocate for autism, I present a tremendous inconvenience for those dealing with low functioning autism. I take away from the narrative of autism as a disability. No one is going to come away from meeting me overwhelmed with pity at the horrible state of those living with autism. Furthermore, the fact that I am as functional as I am raises an implicit challenge to those less fortunate than me. If I could succeed what does it say about those who do not? This may not be fair but it taints them with failure.

I have Asperger syndrome and I am proud of it. My way of life is equally legitimate to that of other people. I will continue to fight for myself and for others with Asperger syndrome so that we should be able to have our stake in our multicultural society.

Being Part of the Disabled Community Versus Being a Member of a Minority Group (Part I)

I have a friend who is a quadriplegic. While he gets around in a wheelchair, I would not, though, view him as disabled; he leads a perfectly functional life and, to the best of my knowledge, is completely self-sufficient. Everything he does, though, takes thought and planning. For example, he can drive, but he needs to use a special contraption that allows him to control the breaks and the accelerator by hand. (FDR used something similar when he drove.) Getting in and out of a car is an elaborate ritual. He has to break his wheelchair down in order to get it into the back. To get out he needs to put the wheelchair back together and shift his body from the seat of the car into the chair. I admire him for how he is able to live, particularly since I am certain that I, put in a similar situation, God forbid, would not be able to cope like he does.

To make the issue of disability more complicated, my quadriplegic friend has certain advantages over other people. Since his lifestyle requires such constant awareness, he possesses a set of thinking patterns that most other people do not have. I imagine that it is only a matter of time and advocacy until people in the general business community realize that the skills that people like my friend have are a lot more valuable to a company than a functional pair of legs and start actively hiring people in wheelchairs not as a matter of charity or goodwill but as a matter of simple self-interest. We may see a time when “wheelchair thinking” becomes a valuable skill to be taught even to those not in wheelchairs.

From a perspective of disability advocacy, my friend is a two-edged sword. On one hand he is a poster child for what people can do even from a wheelchair. On the other hand, having someone like him can be counter-productive. He does not inspire pity; people do not come away from meeting him thinking what a horrible situation he is in and how miserable it must be to be a quadriplegic. He inspires hope and hope can be a dangerous thing. He creates a standard that is hard to live up to. What does one say to those quadriplegics who never become as functional as he is; are they “failures?” As I see it, the needs of my friend are very different than that of a traditionally disabled person. His situation is a closer fit to being a minority. He does not need people to “help” him; what he requires is tolerance, a certain awareness and understanding on the part of society. People need to get over their ambulatory biases and realize that there are people who live their lives without a functional pair of legs and that this is a perfectly legitimate lifestyle option.

My friend’s situation as very high functioning quadriplegic is not that different from being black or being gay. I work and study on a college campus. We have black advocacy groups to make sure that I, as a white person from a middle-class background, do not immediately assume that if a male black student comes into class wearing baggy jeans, a baseball cap in backward and several gold necklaces that he is a criminal likely to mug me on my way home. Similarly, there are gay advocacy groups to make sure that I, as a heterosexual male, do not freak out and assume that if a gay student comes over to me and compliments me on my fashion sense that this student had a crush on me and is trying to tempt me into having gay sex with him. I should not feel threatened by having gay students. As their history teacher, I should not be yelling at them that they are evil sinners, going against nature and are bound straight to hell. I should also not try to “turn” them straight or tell them that I am praying for them to change their ways. I need to understand that my way of life and my values do not apply to everyone. That other people have alternative lifestyles that are perfectly legitimate. Being on a college campus means living in a multicultural environment; if I cannot manage that I should find employment somewhere else.

(To be continued …)