On October 12, 2008, Autism Speaks held a walk on the Ohio State University campus, and President Gee presided as the honorary chair. During his speech, Gee claimed, "It [autism] should not exist." A letter to Gee, written by an OSU student with Asperger's, follows.
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
CC: Brenda Brueggemann, Coordinator of the Disability Studies Program, Department of English
3 comments:
Brilliant letter! I hope he has the courage and integrity to reply not only to Melanie, personally, but in a public setting. It is so important for people to realize that many autistic individuals contribute great and wonderful things to society through their endeavors.
It is a great letter, but you can not speak for Severely effected Autistic Individuals and please don't attempt too. You have no idea how a Severely Autistic person feels about their Autism. You are as different from them as an A-typical person is from you.
Anonymous
How would you know? You're not exactly 'severe' are you? I don't know what you mean by that since 'severe' could mean anything. If on the other hand you mean low functioning in the specific sense of having co-morbid mental retardation, i.e. an IQ < 70 then you still don't qualify. So how exactly do you know that 'severe' autism is so very different from autism but without mental retardation? Do you think that because people don't know what it's like to be mentally retarded they can't talk about autism? That doesn't make sense. Mental retardation is not a requirement for a diagnosis of autism. There are no official criteria for 'severe' either.
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