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."

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