Including Samuel

I went to a viewing of Including Samuel yesterday at UVM. I'd been hearing so much about the film on NPR and I really wanted to see it. I almost didn't go, since leaving the house for me has become like bonking chick-a-dees on the head--in other words, I can't seem to bring myself to do it. But it was well worth it, and I suggest you go if there is a viewing near you. From the film's website:

Dan Habib's documentary film Including Samuel examines the educational and social inclusion of youth with disabilities. The film is built on the efforts of Habib and his family to include Samuel, 7, in all facets of school and community. Including Samuel also features four other families with varied inclusion experiences, plus interviews with dozens of teachers, young people, parents and disability rights experts.

A trailer of the film is now available.  In fall 2007, Including Samuel will be released as a broadcast-quality film, a teaching guide and a website. The target audience will be the general public, students at the middle and high school levels, general and special educators, and college students and teachers.

The film was followed by a Q&A with a panel that included a young man who is a self-advocate and was raised in the VT special education arena, a local school principal, the filmmaker, Dan Habib, and the mother of a young man with DS.

Some thoughts/notes from the film/Q&A. I have not given myself time to thoroughly digest everything, but if I do not get my thoughts down, I may not ever note anything about it. Thoughts in my brain are like water in a sieve lately.

(Note all quotes are potentially paraphrases...)

• Sometimes, and perhaps this is more a testament to how "ok" I generally am with Georgia's diagnosis, and less about denial, I feel like a fraud when I am doing things that are geared specifically towards the disabled community and their families and peers. Now, I realize this is stinkin' thinkin' from the get-go because whether or not I am related in some way to a person with a disability, it IS my concern regardless. As pointed out in this film, disabilities rights are a civil rights issue. Civil rights should be everyone's concern, undoubtedly. Maybe it is that Georgia is still so young, but sometimes I...I don't know...I don't forget that we are a part of the disabled community, I guess sometimes though, it's just not so glaring. To me anyway. To others, they probably need sunglasses. Just a thought anyhow.
• The importance of siblings. This is something I have been thinking a lot about. I've always wanted more than one child. If I can afford it, I would like a couple more at least (scared yet, Alex?), but I'd be lying if I said I don't think about how this may benefit Georgia in the long run. Some people might argue that this is some kind of insurance policy. I see their point. But as a child with siblings, I know how important they are. Regardless of how bonkers they can drive you. Though I have to say, the love between Samuel and his older brother, Isaiah is evident and winsome, extraordinary even.
• Keith Jones is a rapper who has cerebral palsy. He is absolutely charming and gifted. The scene when he makes vows to his wife at their wedding left nary an eye in the house dry. I would love to meet this inspiring man.
• Quote from Samuel's mother: "I want to be his mother, not his therapist." I can totally relate to this.
• The need for positive powerful role models. This struck a chord with me, because as others have noted, ( Tom, I am going to use you as an example, I hope you don't mind.), sometimes it feels like as parents of a child with DS we tend to go around, and as Tom says, "point to all of the accomplishments made by children and adults with Down syndrome" as if to say see? See, they are people too. They can DO stuff. It's true--and I can totally sympathize on this point--I link to and email my family and friends articles and videos about Karen Gaffney, and Brad Hennefer. I get teary-eyed and feel a certain sense of "phew" when I see someone with DS prove society wrong. But truthfully, sometimes, I have also felt bad about it. I have felt disingenuous. Like I am trying to PROVE my daughter's rights by virtue of the fact that some people with DS do cool, interesting, difficult, unusual (or quite usual) things. But that's the thing. People like Georgia have been oppressed for generations.  While I can see how it is in a way calling attention to their disability when someone accomplishes something rather mundane (starting a business--although, heck if Iiii've started one!), or truly unique ( Michael Jurogue Johnson ), in actuality, I am pointing to the accomplishments of people who are oppressed, but who have, in their own right, overcome both that oppression and in many cases the physical limitations placed upon them when so much is stacked against them. To laud them and give them kudos, to remind myself that truly things (both incredible and mundane) are possible for Georgia, for our friends, even for myself. I have been truly inspired by so many people, like Karen Gaffney who swims 3 miles a day. I have not done that, I don't know if I could. But she inspires me to try to do things that seem impossible. In the future, I will use these folks as role models. For myself, and for my daughter, who, sadly, is among the dwindling few and deserve to have role models just like herself to look up to.
• Norman Kunc. Oh, how I wish I did not have to miss it when he spoke at a DS convention in CT. Talk about inspirational people! Mr. Kunc has CP. When asked if he would do what was necessary to rid himself of CP if there were a cure, he answers in the negaive , "Who I am is a product of my history."
• Last frontier of desegregation. Actual (paraphrased) quote from anti-desegregation documents: "If we integrate blacks, the next thing you know, we'll be integrating the disabled." There aren't even words for what this brings up in me. Yes, that is a cop out. But all I feel I can do is sit on those words for a little while.
• Finally, a random note. I would say women outnumbered men in this viewing audience, many of whom were students in a class on disabled rights, somewhere in the vicinity of 9 to 1. I thought that was interesting. And not only slightly sad.