Advocacy Through Multiple Perspectives, An Interview with Elesia Ashkenazy

by Dora Raymaker

Published January 25, 2009 @ 11:23AM PT

There are so many different perspectives on autism and disability: perspectives from self advocates, from parents, from service providers and therapists, perspectives both from deep within the larger disability rights movement and without. The perspective of people who were born with their disabilities and the perspective of people who acquired their disabilities later in life. While people with different perspectives often disagree (sometimes violently) with each other, I also feel there is much to be learned from considering and integrating multiple perspectives (blame this on my systems science Interest!).

Autism cause member Elesia Ashkenazy is a person who has many those perspectives at once. She's always been an Aspergers' autistic, and also went from having a usable amount of hearing to being profoundly deaf. She has been a professional in the speech language pathology field, and is the parent of an autistic child. She has been involved in both the Deaf and Autistic culture movements. Since it's hard to get people from all those perspectives to agree on much of anything, I was curious what the experience of having all these perspectives (particularly the cross-disability perspectives) at once may have taught Elesia about disability and advocacy.

Dora: You've been able to view disability from a lot of different perspectives. What is the most important insight you feel you've gained from experiencing disability in so many different ways?

Elesia: The most important insight I have gained about disability through my experiences would fall right in line with a Kim Peek quote, which goes: You don't have to be disabled to be different because everybody is different. I have also come to feel that being disabled is more about being mismatched with the environment rather than being "broken" or "afflicted." It is not until I learned that life is not always about labels--though labels definitely have a time and a place--but more about learning to love myself for who I am. It was from that idea that I was able to choose to live life, which has now become a game that I am playing; only I am the director.

Dora: You were active in the Deaf community before you became involved with the Autistic community. What knowledge or skills gained from being an advocate in the Deaf community have you found most applicable to being an advocate in the Autistic community (both as a self-advocate and as an advocate for your child)?

Elesia: Cliché as this may be, I suppose that I have learned that it really is best to catch flies with a little honey. I completely understand taking a militant stance. I mean, enough is enough. There is, however, great value in putting out positive proactive messages and sticking to the bottom line without using negative tactics. I have never fought for Deaf or Autistic rights, per say, but I have stood my ground armed with peace and love. Sharing ideas and beliefs keeps the world turning. On the other hand, precious energy is wasted when power is given to ongoing disagreements. A message is most effective when simply stated and then lived.

Dora: What thing or things do you feel are the most similar between the Deaf and Autistic communities?

Elesia: Compassion and understanding along with sharing a common culture. Our autism brings us together in the same way that deafness binds the Deaf community. There is what I call "special homing chemicals" between those who fall from the same tree.

Dora: What thing or things do you feel are the most the different between the Deaf and Autistic communities?

Elesia: Obviously, autistics do not share a language specific to the community. It also comes to mind that the Autistic community is much newer and lacks the rich history of the Deaf community. For too long, autistics have been robbed of having a voice. It is as if we are greenhorns as far as building a community and expressing a culture. It pleases me how successful we have become thus far.

Dora: Some self-advocates might claim that you've adopted a cure rather than acceptance stance by getting a cochlear implant. Would you agree or disagree? Could you talk a little about why you decided to get the cochlear implant, and how you feel your decision fits in (or not) with the complex issue of "cure?"

Elesia: Cochlear implants are not a cure for deafness. That is a myth. Cochlear implants are an assistive device. I can choose when I do and do not want to use my cochlear implant. I would not have gone through with the surgery if I were not able to have this control. Cochlear implants are an individual choice. Forcing cochlear implants on every deaf child or person is, in and of itself, proposing that one shoe fits all. As far as the complex "cure" issue, let me put it this way. I used to live my life practically killing myself to please anyone and everyone. Guess what? I had no true friends.

Dora: What do you feel is the most important thing the Autistic community can learn from the Deaf community?

Elesia: How empowering and meaningful it is to be a part of a positive (or posautive) thriving close knit community regardless of antagonistic societal fears or disapproval.