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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.


Maddy said...

It's not such an exclusive club afterall, the pregnancy club and the disability club as everyone is welcome.
Best wishes

David said...

Thank you for sharing your thoughtful reflections and journey.

Jacqui said...

Hi Kathryn,

Wow - I didn't know that you had club feet. That must have been tough.

I was very ignorant before Moo too. That's why I think that we can make such a difference. I don't think the abled-bodied are being mean - I think they are just ignorant like we were. And hopefully with a bit of education, we can help change the world. Though I do think that we are not ever going to entirely get it. Maybe Ellie and Moo can explain it to us one day. I just hope in the meantime that I don't make too many mistakes.


Anonymous said...

We can learn so much as parents, yes? Thanks.

Kathryn said...

Thanks everyone.

Jacqui - I think most able bodied are not being mean - though some are if they realize it or not.

I agree too that I can't really know exactly what Ellie is feeling, thinking, experiencing. I hope one day she can tell me. I love Emma's and David's blog for this reason, because they tell me.

I have hope too that by educating myself and talking about it to others that I can make a difference.

I also really, really relate to what you said about not making too many mistakes. I am conscious of that all the time.

Never That Easy said...

Kathryn -

We're all just learning - and days like today are about letting people know how important it is to keep learning. I think your post illustrates this, so well.

Lori said...

Awareness is everything. You do so much to raise awareness, and I am sure you will continue to do so.

I have a 16 year old nephew who is profoundly autistic. Having him in my life has made me much more aware to even some of the more subtle signs of autism which has often made me more understanding of children on the playground, or in the grocery store. And then it will make me sad when I realize that without that awareness I might have inappropriately judged that same child and parent. Being aware of all the ways we can all be ignorant to the difficulties of others is so important.

Great post Kathryn!

Kay Olson said...

Great post!

Despite your experiences with the inappropriateness of inclusive education for Ellie now, your writing about seeing disability and understanding that girl at the gym makes me wonder how much better younger generations might be at this, just through better exposure to each other.

Kathryn said...

Kay, I hope the younger generation will better understand and have less ignorance about disability and it's differences. There is a sweeping wave of integration in the school system now. From one angle it's enlightened from another it's to save money. Since it is new, it will take some time to get it right. It is a great opportunity to have real inclusion and is much better than our history of shunting the disabled away to institutions never to be heard from again. But it is new and requires different thinking and sensitivities and time to get it right. I hope that more schools get it right.

Unknown said...

The integration isn't quite that new... I'm 30 now, and it had already started way back when I was in preschool -- so I got to go all the way through mainstream school, with accommodations as I needed them. Same with Alex Bain, a flaming autistic that was mainstreamed completely. :-)

I loved your post, though... I know what you mean about the grandfather, since my great-grandpa had diabetes and was blind. My brother probably would say similar about me -- our parents raised us so that my disabilities were just another part of family life, no different from how gender makes his/my bodies dissimilar.

I also had to wave hello, as my main physical disabilities are the full-blown version of the same rare early-fetal abnormality called (called VATER) that also causes club-foot. (If you're still finding new disabilities in your girl, you might check to see if anything on that linked page is familiar, especially down at the 3/4 "other birth defects" area. If she's VATER then there's a great support network out there, and you can learn more of what to look for.)

Anonymous said...

I think that real inclusion gets what you felt with your grandfather - you just thought of him your grandfather and his blindness was one of his many characteristics. If we could have inclusion like that in the school system, just imagine how the world would be changed!

Unknown said...

My wife considers our daughter with cerebral palsy a gift from God. She is beautiful regardless if she is disabled or not.