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Monday, April 30, 2007

May 1 is Blogging Against Disablism Day: my two sense

I first learned about this from David. At Diary of a Goldfish here you can see the origins and the impressive list of bloggers participating. I highly recommend checking them out.

What exactly is Disablism? Quite simply, it’s discrimination against anyone with a disability. In the US it is referred to as Ableism, which sounds very euphemistic and in doing so down playing the harm that comes from this type of discrimination.

I have learned a great deal about disability discrimination from reading about
Lisa’s, David’s, Emma’s and Kay’s, Autism Diva, and Amanda’s experiences. There are also many parents blogging about the discrimination their disabled children experience, notably Jacqui and Rob. *Addition made on May 1: Check out Lady Bracknell's entry for BADD - it's great. I am thankful for everyone sharing their experiences through their blogs and enlightening me. Until you have experience with something you can’t truly understand it. This is the nature of ignorance. Ignorance is defined as:
  1. The state or fact of being ignorant; lack of knowledge, learning, information, etc.

  2. The condition of being uneducated, unaware, or uniformed.

It is derived from the Latin: ignorantia which means to ignore.

Before all this happened with Elle I was very ignorant about disability issues and abuses. By living through this experience as well as reading these blogs I am less ignorant. I have written already about isms, especially disablism here.

There are many more posts about disability rights that you can find here. In fact, my second post ever was written about a subtle form of disablism I discovered in my struggles to wrestle a handicap placard out of the Registry of Motor vehicles.

For the most part I have been lucky enough to live as an able bodied person. I say lucky because I was born with severely clubbed feet and have had to deal with the repercussions of that all my life. I am lucky I wasn’t born a century earlier because I would not have walked. As such I spent a few weeks in a wheelchair and then had to relearn how to walk after one of the operations and had physical therapy for years after. I was 13 at the time of that major operation on both legs and feet, and though it was very painful, I was up on my feet again within a month or so. So I can’t really say that I understand Ellie not being able to walk. I do understand not always being to control my own feet and having to think about taking each step. Heel toe, heel toe, heel toe is the silent mantra that I think more loudly when I am tired. All that said it only held me back from not getting to take ballet lessons because my mother said I could never do well at that because of my feet. Lost dreams are hard.

When I had Ellie I became the mother of this beautiful person I loved more than life itself who also had multiple disabilities some of them are still showing up these days. And that is hard. But as such, I wanted to learn as much about the landscape that Ellie would be facing as possible so I could protect her. I still have a lot to learn but my mind is open. Opening the mind can be difficult at times as I detail
here about my fears of having Ellie in an all special needs school.

To be totally honest my experience with people with disabilities before Ellie was very limited. The first one I remember was a girl in my gymnastic classes at the YMCA when I was 7. She was cross eyed, drooled, was overweight and used to steal people’s pocket money out of the lockers, or so it was said. She couldn’t speak well but would vocalize what sounded like grunts and groans and sometimes words I understood. In truth, I was a little repelled by her. She was a little older than me. I don’t remember ever speaking to her. But I remember her. I remembered her when Ellie was born and worried that Ellie would be like her.

Today looking back I see this girl differently. I know now that she had some hypotonia (the drooling is often a result of low tone in the facial muscles like when you go to the dentist and can’t feel your face so you might drool a bit – that’s a lack of muscle control), vision issues, and speech impairment. She had probably sustained some sort of brain injury just like Ellie. The fact that she was at the Y doing gymnastics, I see now, was a fantastic thing. She was out there in the world doing something she liked. I look back and feel bad that I was a little intimidated by her and a little afraid. I wonder if she really did steal from the lockers or did something go missing and she was blamed because she was the different one.
The “out group member” is the psychological term I learned for this years later in my Ph.D. program. Out-group members are typically made into scapegoats when there is a need to blame someone by those in control = the in-group. I look back at her now and realize how great she was doing to be able to do any gymnastics at all and to be navigating the entire situation on her own. Maybe she had some good parents who wanted her to have a life where she too got to participate.

I wish that my parents could have told me what her differences were about? Not that they would know. But if I could have understood her struggles and triumphs more I think that would have helped me not be afraid of her. But no one ever said anything about her other than the stuff about the stealing. Missed opportunity. Maybe some tried to ignore her disabilities and act like she was not different. David talks about the effects of that

The other experience I had with disability after this was with my grandfather. In his old age he went blind. My grandfather looked like a much more handsome, silver haired, taller version of Ronald Reagan. He always had a smile and a great belly laugh. He taught me to waltz and the fox trot. He was an excellent, hands on, fun grandpa. When he lost is vision (after my grandma died) he lived with us for a few years until he moved to a nursing home. I was twelve. I did not think of him as disabled or blind. He was my grandpa who had gone blind but that was somehow different from him being a blind person to me at that time. I had no comprehension then of what he must have been dealing with – the loss his sight, his independence, the loss of his wife, the loss of his life. I knew he was unhappy, but I could not empathize like I can now. I felt bad he was suffering but could in no way relate.

I think of him when I hear David and Lisa sometimes refer to the able bodied as temporarily able bodied.

One of the main reasons I write this blog is to help other parents raising children like Ellie. I receive emails and comments showing me that it is also helping able-bodied people understand life with disability and it’s many faces. Before all of this happened with Ellie, my perspective was totally different. The values I had, what made me happy, and even what I could see. Seeing disability might just be a first step in starting to understand it. When I say seeing it I mean that sometimes you just don’t see it. An example of this is when I was pregnant with Ellie. I was in Los Angeles and could have sworn to never seeing another pregnant person there ever. But when I became pregnant, other pregnant women were everywhere. Funny how that works.