Friday, September 23, 2011

Friday wrap-up

It's a wet Friday and I had to pick Ben up at school because he was sick, so he missed the football game (though we did drive by and see the teams lined up wearing all their kit in the pouring rain!)

I wanted to point you to some interesting dialogue on the blogosphere. 

Claire at Life With a Severely Disabled Child wrote a piece about how she doesn't associate her daughter's disabilities with who she is as a person:  

I do not interpret her disabilities as gifts that enhance or make her who she is. Who she is, her identity, is, to me, more about her personality, her little quirks and preferences. Her disabilities, on the other hand, stifle her, stifle who she is. She cannot write for long because it will hurt her arm. She cannot express herself because she can't catch hold of the words. She cannot put together a plan for her life because she is completely dependent on others and can't even think in those terms.

This piece was actually a challenge to Bill at Bad Cripple, and he responded with Identity and Disability, Part II:

...when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick. 

Meanwhile, Heather at The Journey Continues blogs about celebrating the first birthday of son Zack since his death: Finding A Way Through a Year of Firsts:

After the death of a child or even any death in a family, it's hard to ever imagine celebrating anything again. I was the type of mom who loved to decorate for all occasions. I haven't done that since Zack died. I think I've come to realize that those things just aren't as important as they once were. Balloons and banners don't make a holiday special, it is having the ones you love around you, that make the memories of those days. 

Heather goes on to share practical tips on how we can find comfort in remembering the ones we've lost.

And this morning I spoke with Jennifer Johannesen, who many of you know as a BLOOM contributor and mother to the engaging Owen, who died last October.

Jennifer is expecting the first copies of her book No Ordinary Boy, which will be available through Amazon next month. Check out excerpts and stunning photos of Owen in the last year of his life at No Ordinary Boy. And this was a powerful blog Jennifer wrote about the process of writing her book.

Patient Voices on The New York Times has an interesting series of profiles of people talking about living with autism.