Advice from Someone Who Has Been There

advice for parents

I love Larry Bissonnette- artist and disability rights activist. If you have seen Wretches & Jabberers or My Life as an Artist, or seen Larry present- I’m sure you are right there with me. His paintings are extraordinary, his words brilliant, and his wit and personality beyond wonderful. He is an exceptional person I feel privledged to call friend.

We have been lucky enough to spend a lot of time with Larry; a weekend at our home in Tampa, a week in Vermont (where we were able to visit Larry’s studio and watch him create his paintings) and numerous conferences over the last couple of years (COPAA, MIT, Summer Institute).

We’ve had talks about life, autism, disability, politics, discrimination, art, philosophy lasting into the late hours of the evening. Larry’s opinion is one I greatly value, especially when it comes to issues related to disability, autism, inclusion, and communication. He has a perspective that I can never know since I have never experienced anything as a person with a disability. Anything. Let alone a lifetime.

We have done our best to raise Henry in a home where he is treated with the same respect as every other member. But, the reality is there is a great deal of prejudice and discrimination for people with disabilities in the world. I see it as the mother of a person with a disability. I see it every day. Many times from well-intentioned people who just don’t know any better. I see it, it affects me every time, but I cannot know what it is like to live this, because I did not grow up facing any discrimination and I still don’t. I am not discounting my experience as a parent, simply acknowledging that the truth.

Listening to the voices of activists like Larry, Norm Kunc, Bob Williams, Anne McDonald, Stephen Kuusisto, Richard Attfield, Justin Dart, Tracy Thresher, Freida Zames, Paula Durbin-Westby, Sue Rubin, Landon Bryce, AZ Chapman, Ibby Anderson-Grace, Ari Ne’eman, Donna Williams, Amy Sequenzia, Emily Titon, Fred Faye, Rachel Cohen-Rottenberg, Julia Bascom, Karla Fisher, Lydia Brown and Jaime Burke, and countless others, that have actually experienced life with a disability, has helped me be a better parent to my child who has a disability.

Disability rights activists  have helped me understand things I just don’t have the perspective to understand without their help. When I wrote about this before, another parent wrote that they would never have a stranger tell them how to raise their child. I’m not suggesting that at all. But I am suggesting that we learn, listen to, and respect the voices of adult advocates.

As much as I feel I have experienced things with Henry- the pain of discrimination, the joy of having a friend who gets him, the struggle to hear in certain situations, the pleasure of being able to express the thoughts in his head through typing, the frustration when getting stuck interferes with  something he wants to do –  I can only relate to these things from my perspective as a non-disabled parent.

I think it is so hard for us to truly understand what it would be like to go to therapy many times a week from the age of one or two years old, to have people talk about you as if you are not there, to be told that you can’t go to the same school as your neighbors, brothers and sisters, to be unable to visit a friends house because you can’t get in the door, to be unable to hear a movie that doesn’t have closed captioning. I can imagine it, almost feel it, really, but I cannot know life with that being my only reality, because it hasn’t been.

But self advocates do understand. They’ve lived it. They are on the front lines, fighting for disability rights, changing the world, making it a better place for all of us.

Recently, there was an article by a parent who does not have a disability, questioning autistic self- advocates and the neurodiversity movement’s representation of autism.  The article did not include the opinion of one person on the spectrum or with a disability. That fact alone is very symbolic of the ableism that is so prevalent in our society. The author does her best to malign the very people who are advocating for supports and  change for children like her son, like my son.

The advocates Lutz names are the very ones that put themselves out there when Henry faced discrimination.

Has Lutz spent any time with the people in her article ? I have, and her descriptions of them could not be further from the truth.

It’s interesting, but the only time I have heard parents discounting the voices of self advocates is in the autism community. It is only in this community that I have seen parents without disabilities measuring  the severity of another’s disability as it relates to their right to membership and voice in the community. Many of these people throw around functioning labels which marginalize everyone- your either too disabled or not disabled enough. Neither of which anyone other than the individual themselves can speak to because everyone has their own unique and dynamic experience.

In her post Lutz’s asked, “Is the Neurodiversity movement misrepresenting autism?”

What could be wrong with accepting and respecting people for who they are and acknowledging that diversity and disability are a natural part of the human condition ?

 

About the Author:

Advocate committed to inclusion & social justice, proud mother of three wonderful humans, and part of the team that started Ollibean.

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