Monday, August 17, 2009

Disability is Natural: Discussion No. 1

So, I'm finally reading it. I first became aware of it from Beth's blog, and then Jen's, and now it seems as though a lot of fellow blogging parents are reading it. If you haven't, you should.

It's not like any other book out there on the subject of disability. It's not an informational book about any particular disability or condition, or disabilities and conditions in general. It's not a memoir by a parent with a child with a disability (although the author, Kathie Snow, does have a son who has cerebral palsy). It's not a reference manual on how to help our kids achieve gross motor, fine motor, or communication skills.

So what is it? It's a big, giant (a little over 600 pages!) book about breaking out of "Disability World."

I'm not quite 100 pages into it at this point, but it's already impacting me to a huge degree. I'm making my way through it wielding a yellow highlighter.

Consider this:

"[Disability] Labels are like double-edged swords, however. They cut both ways. The same labels that enable our children to receive services also lead our children down the path to segregation and exclusion. Our children are routinely judged (usually negatively) based solely on their labels."

I remember very clearly being visited in the NICU when Finn was there by a social worker who came to get Finn "into the system" because he had been diagnosed with Down syndrome. She unemotionally told me about Regional Center, and PT, and OT, and ST, and how Finn would need therapy, beginning as soon as possible, as I sat there and cried. She was not moved by my tears. I remember asking her, "Is all that really necessary?" She said something to the effect of, "Don't you want him to be the best he can be? Then yes, he'll need to go to baby school." This determination was not made on anything having to do with Finn personally, as an individual. It was made based solely on his diagnosis.

I remember thinking to myself, "If I take him home and ignore the diagnosis and just treat him like a normal baby, won't that make it so?" I realize now that that wish of mine was steeped in the grief I was feeling at that time. I wanted more than anything for Finn to just not have Ds. But on some level, the wish has stuck with me. Not in a denial sense, but . . . a realization on some level that if our family treats him as a baby or child with a disability, then that's exactly who and what he'll be. I realize Finn has limitations, but don't we all? What is "normal"? Who is perfect? Can't we do best by Finn by treating him just like we treat our other kids - of course taking into account his own personal talents and hindrances, just like we do the other kids?

More food for thought:

"One group of experts has shared the belief that retardation is actually caused by the environment. When people with an MR label are forced into segregated settings, treated like children, and prevented from living the lives of their choice, they are in 'retarding environments.' They're prevented from learning and growing because of the restrictive settings they inhabit. To which group [of experts] can we attribute this profound wisdom? The top experts in the disability field: young men and women who have been told they have mental retardation. What does mental retardation really mean? It simply means a person's cognitive abilities may develop differently than the so-called norm."

Wow. Definitely something to mull over, don't you think?

And here's a gratuitous photo of something Finn showed me today that he can do: feed himself a cracker, all by himself. I've been stressing a little over the fact that he's really not self-feeding. But he's showing me, once again, that he'll do things in his own time. It doesn't mean there's anything wrong with him. He's got his own timeline, that's all.

I bring this up because therapy is a big theme in Disability is Natural. Does it help or hinder? It's easy to see how it can help. And there is no denying that the various therapies available today do help children who have disabilities. But hinder? Hmmmm. Looked at from another perspective, can it also be viewed as something that fosters separation, division, emphasizing a child's differences and even weaknesses?

I will say that I have found myself torn about therapy over and over of late. I honestly can't sit here and say with complete sincerity that I believe the therapy Finn has received has made a huge difference in his development. That cracker he fed himself tonight? That wasn't because Andres, his OT, taught him how to eat a cracker. He was just ready to do it, that's all. And I really believe the same about sitting, crawling, and all that. And rolling over - Finn began rolling over at three and a half weeks old! All by himself. Nobody taught him how to do that. Having known Finn for a good solid year + now, I see a pattern: he does things when he's ready, and for the most part, he's perfectly capable of figuring out stuff all by himself. That's not to say that he won't need extra help in certain areas over the course of his life - but more and more, I am rejecting the idea that he must live under this label of DISABLED.

I have far to go in the book and expect to have lots more to say in the coming days/weeks. For now, I'll close with this:

"Your belief in your child and his potential has a greater influence over his success than his disability."


Tara Marie said...

I love Kathie Snow, and this one one of the first websites I found when I was pregnant with Emma Sage and we had a 'soft marker' for Down syndrome. It is also one of the reasons I personally opted out of E.I.

I have a group at called 'Normalacy of Difference' as I have always maintained, that will my daughter might have a different genetic make-up from the typical, her life is perfectly part of the norm.

I'm so glad you are reading Kathie.....while I don't always agree with everything she has to say, she always gives me things to think about and different ways of looking at things.

The group is here:

and there is a wonderful book called:

Kristin said...

What a fantastic book. I love the points that you have shared. I will have to check this one out. Thanks.

Lori said...

This is the first I have heard of it, I will definitely have to look into getting this!

jonas said...

all your observations here are great. we feel the same way about therapy -- that sometimes maybe it helps, if only to give us some kind of structure or things to look out for, but that really Archer will do what he wants when he wants -- but at the same time the slower pace of some of that stuff (like walking, oh, how we're waaaaaaiiiittttttiiiinnnggggg for walking) gets frustrating, no matter how much you KNOW he will walk, it's just a matter of when he feels like it.

I'm going to have to read that book...

Anna Alexandrova said...

Way to go, Finn, on the cracker front! I am so happy for him! I am sure Cheerios haven't got long to wait either. Congratulations, Lisa!

Chrystal said...

I am always amazed at how fast you read! I think I'm on page 40...last thing I remember was "100%Disabled."

The history part chilled me to the bone.

Ria said...

I'm going to get a copy of this book! Thanks for sharing some interesting points.

Hector and Jennifer Varanini Sanchez said...

I think I need to read this book!

Mel said...

Wow, I definitely need to read this book. Thanks for sharing. After seeing the video of Finn being 'therapied' with the walking and reading this post, I totally see where you are coming from. And all our kids will walk and talk and whatever else they need or want to do, and soes a month here or there really make that much difference?

Ruby's Mom said...

I saw Beth's post about this book awhile back and have been meaning to get it to read.It sounds like a good book.

stephanie said...

Hi, I just "bumped" into your blog.Glad I did. Sounds like a book worth reading. I also believe our kids will do everything in their own time. I know my daughter Emilia's PT would like the credit for her accomplishments thus far but, honestly it's just Em doin' her thing. She is the youngest of six and she will have to keep up.Of course with our helping hands when needed. Your blog and Finn are beautiful.