Monday, December 31, 2007

Year in Review: Reflections on the Ashley Treatment and Other Memorable Posts

When I planned to take a year to interview people about growing up with a disability, the blogging was an afterthought. It was a way to share the interviews and some of my thoughts. 2007 didn't quite go as I expected, project-wise and blog-wise, and there was so much learning that I didn't anticipate.

In January of 2007, I heard about the "Ashley Treatment" - the so-called treatment being a hysterectomy, breast removal, and high-dose hormones to suppress the growth of a 6 year old girl with cerebral palsy. I didn't think I was naive - I have a loving home, but knew very well that many in the world don't. I've had my own negative experiences with societal institutions - healthcare and education, in particular. I have experienced ableism - discrimination based on ability. I had read about the civil rights movement, listened to black friends talk about racism, listened to women talk about sexism. But, blogging about the Ashley Treatment was a turning point for me. I just did not realize that so many, many people could think that what happened to that little girl was ok. Some people I care about thought it was OK. Some people I didn't even know thought they could say cruel and hateful things to me, because I spoke for this child's rights.

So, I guess I was naive.

A flood of emotions and thoughts come out of that experience. What is it with this world that we cannot recognize humanity in each other?

I realize how little the able-bodied community understands about living with a disability. They see us as less than they are, often as disposable, and they feel sorry for our caregivers. Our cultural institutions don't support us, and the media misrepresents us or worse.

Now I see many more injustices in the world. And I'm sure that there are many more that I don't see. So many people in the world are seen as "less than", as disposable.

And sometimes I see injustice where there is none. This reminds me of an episode of the TV show House, where Dr. House, who has a leg impairment, sees Christmas candy canes, and says, "Candy Canes! Are you mocking me?" Except in real life it's not so funny.

It's hard not to feel cynical, frustrated, and hopeless. (Check out Cripchick's recent posting on society's reactions to another young child with cerebral palsy. It's tempting to withdraw and pull myself out of all of this stress. Why put myself through the hardship of living in a broken society, a society where many members are not accepted for who they are?

But, I won't withdraw. I am not going to let others define me. This is my world, too. And, I want change. Actually, I want change now, and I feel impatient. (Some days I really don't want to be spending my time in school. My stamina is limited, my health needs take time, and I feel a restlessness spending my productive energy on schoolwork. I'd like to have time to pay more attention to what's happening outside of my life and outside of the classroom. I'd like to get back to interviewing.)

I have, as well, developed a renewed sense of appreciation for activists of all stripes both now and throughout history.

So blogging about the Ashley Treatment changed me.

A few other posts from 2007 that have a strong meaning for me:

1. A Day at Work. In this post I share the typical work day of Chris, a mail clerk at Rotary International. I am very proud of this post. It’s about a man who works hard and loves his job, and the fact that he has a disability is irrelevant. Every workplace should have workers like Chris. If the media, educational facilities, health care institutions, airlines, and the government had workers as conscientious and dedicated as Chris, my life and the lives of others would be impacted immeasurably.

2. Sandbox Lessons. This is the post I wrote for Blogging Against Disablism Day 2007, a post that shares a story from my childhood about how children become ableist.

3. My Costa Rica Experience: A Slideshow and Reflections. My trip to Costa Rica was an amazing experience and I am so grateful to Mobility International USA; Ryan my personal assistant; Eduardo, Marianela, and Maripaz, my host family; and my family and friends who supported me for this wonderful opportunity to learn a little about life in Costa Rica and to learn a lot about me.
4. Understanding the Less Common Perspective. So many people have difficulty understanding my perspective and life experiences living with a disability. This post shared an essay I wrote about my educational experiences for my English class.

My next semester starts in a couple of weeks. Taking 2 classes at a time fills my time. I hope to blog when I can.

I wish you and yours a safe and blessed New Year. All the best in 2008!

2 comments:

terriblepalsy said...

I started 2007, believing that I had no right to judge (ashley's parents) as I hadn't been in their shoes. I ended 2007 realising that I could not stay silent as there is no point where this becomes okay. That a life is still al life, no matter what. That to let the line blur just that little bit opens the floodgates.

Thanks for the round up David. I wish you a happy and fulfilled 2008.

Anonymous said...

Hey! Happy New Year, sir! :)

I love this time of year. I try to look back and look forward at the same time. You have done a great job of that in this post.

Some of the things that most struck me from this is that you were changed most by the Ashley story and some of the things that were posted here as a result. That's strong stuff. What a courageous thing to put yourself out here like this. Truly. Being an activist is like that, I guess. To me, it has less to do with your disability and more to do with using your voice. You open yourself up to so much when you speak out. Believe me, I know!

Spending my life as a teacher, I am also most intrigued by your reflections on "education" and your struggles with the system. How interesting that we see schooling and life as so separate, huh? True education is what we should be experiencing as we do this thing we call life, but so often it doesn't work that way, does it?

I also like to use the new year as a time to reflect on priorities and notice what's working and what's not. I tend not to be in a rush with things, so I have to work to make sure I keep on keepin' on!

Best to you as you continue your quest. The best lessons are almost always the unintended ones.

xoxo, Lee P.