Sunday, January 11, 2009

Milk, disability, inclusion

We saw "Milk" this evening.  This was a movie I'd been waiting for a chance to see, and it did not disappoint.  Despite being a fairly straightforward biopic, the characters, the story, the actors, and the direction brought to life an inspiring story and brought back memories of what, in retrospect, seems a comforting time: the 1970s and its earnestness.  And its jaded earnestness.

I was watching the movie for story and theme--for inspiration, really.  In helping to "Including Samuel," a movie about civil rights for disabled children, to our elementary school, I started referring to myself as "out" about having a disabled child.  It felt the right analogy.  Disabled children and their parents can be closeted one way or another--look at the controversy about the Travolta's son, or consider the fact that at our elementary school there are over 100 children with IEPs, yet most people consider the number of children with disabilities a very small part of the school community.  I'm guessing that there are about 500 kids total in this K-5 school, so if over 100 have IEPs, then children with disabilities constitute about 20 percent or more of the school's population.

That is, if you equate having an IEP with having a disability.  One of the aims of the federal government is to work toward inclusion education for all children; that is, blurring and softening the boundaries between general education and special education to make education as seamless a process as possible for all children.  To this end, the federal government is both encouraging us to think differently about disability as well as attempting to make the IEP a tool for students with high needs.  "Response to Intervention" (RTI) is a good example of this: guidelines that allow a child with different learning needs to receive help without going through the IEP process.  

How do I feel about this?  I'm not sure.  As I said, we're out.  Robert's in a wheelchair with a fluorescent green frame--there is no mistaking us for an ordinary family with an ordinary child.  Other families can pass for normal; we can't.  Why aren't other families more open about their child's disabilities?  Disability is a charged word, and admitting disability has social consequences: stigma, isolation, loss of educational opportunity.  Something like being gay in the 1970s.  

I thought, during the movie, about my parents' reaction to my brother coming out of the closet.  Looking back at it, part of their distress was a fear and concern for my brother's well-being on multiple levels: his physical safety, his career opportunities, his ability to fit into society as a whole.  As more and more of my parents' peers have admitted their own children's sexuality (or their own), and being gay is less and less of an isolating experience, my brother's sexuality has seemed more and more normative to my parents and their worries and concerns have abated.

Being gay and being disabled are not the same thing, but the concerns my parents had about my brother and his future have parallels to my own concerns for Robert.  As long as being disabled is something my child is and your child is not (regardless of the kind or degree of ability or disability), my child will face social stigma and decreased access to education, rehabilitation, and medical care.  Because my child is different, lesser than your child.  

One of the things I cannot yet come to terms with in the context of inclusion education is the way the phrase "all children" is used.  On the one hand, I want the barriers to my son's progress to come down.  On the other hand, I worry that "all children" is just another way, for some people, to emphasize what the majority of children need (and the majority of children are not disabled).  This is, of course, the essential dilemma of identity politics: how to articulate specific needs and be accepted by society as a whole at the same time.  

The revolution and the green wheelchair roll on.


2 comments:

meretyping said...

What is "ordinary"? I'm fascinated by your perception of things, that a physical disability, especially, requires an "outing." I would leave things to be self-evident (apart from advocacy), myself, I don't know. Apologies if it's too much to pry, but does having a disabled child fundamentally change the structure of your family from ordinary? My parents have a disabled child, me, and I'm sitting in my wheelchair with the bright green frame and I don't think that's what keeps us from ordinary. Is that another thing to grieve?

Also, about outing and the consequences thereof: the facets of my body and my personality that make me different from other people change my opportunities, but regardless of whether I admit them. Acknowledgment is where the power lies, there, because there are systems in place for those who willingly expose themselves. Labels are safety nets, aren't they, behavior suddenly justified?

jeneva said...

Meretyping, thanks for leaving a comment. You might have misunderstood my comment about "being out," which is part of the context of some of my other posts. What I mean by that is that I'm trying to push for inclusion education for my son (and have been for many years) in the context of a school system in which many, many other parents have children with disabilities that are not visible: learning disabilities, emotional problems, and milder forms of autism. Many of these parents do not wish to ID with parents of children with more visible disabilities because they want to preserve a fence about "otherness"--my child is not like YOUR child--your child is "different," my child is not. Providing an education for YOUR child is a special favor, but mine is as entitled to one as any other typically developing kid.

While you're right that labels can isolate, and that's what those parents fear, their attempts to cover up their child's disabilities further isolate those kids, like my son, who can't hide behind a facade.

I can't hide my child's disability and I don't want to. When some people at my child's school dismiss the handful of disabled kids they can easily ID as a small constituency, special interest community (b/c they can't see the others) I can't hide and neither can he. He's nonverbal, and his basal ganglia disease makes it difficult for him to use a sophisticated communication device right now. He requires personal care and is tube-fed. We are not ordinary--we are extra-ordinary (and that is a term I chose carefully, because I think it is far different from talking about normalcy). I am not grieving about this. I am fighting for his basic rights to be included at all levels of society.

I have fought for years against a school system that was determined to broadly label my child "retarded" in a prejudiced, broad-brushed, and unthinking way, as an excuse not to educate him and develop his very real potential. As an excuse to label him "different" and "unredeemable."

I'm not 100% sure what you mean when you talk about a label being a safety net--because my experience has been that there aren't really social safety nets in place for kids like my son. His disabilities may be more involved than yours, I don't know, and I don't mean to pry, either.

Robert's disabilities have changed our family from ordinary--we fit our outings and errands in around the parameters of his medical care and the fact that, once outside our home, there are virtually no facilities other than the dirty floor of a men's room handicapped stall, under which he is completely visible, to tend to his personal care needs. Guarding his personal privacy has become a big concern of mine. Travel, due to the equipment he needs, is very difficult and requires a lot of planning. We cannot travel by air because we can't guarantee that an idiot security guard will force us to throw away medication, enteral feeding supplies, and the pediatric formula he needs for food because they just don't care what our doctor's letter says: they don't know what any of that stuff is. In which case he could become medically destabilized and very, very ill while traveling.

I really appreciate your leaving a comment and giving me the perspective of a kid with parents. I don't have a way to really get at Robert's perspective altogether. I want his disabilities to be fairly acknowledged, such that he is given accommodations he reasonably needs to participate in society, but I do my best every day to give him what I can to provide as broad a participatory platform as possible.

Stay in touch and help me to keep seeing all sides.