Monday, May 23, 2011

Certain Proof: A Question of Worth

I don't think anyone has ever asked me what the worst part of all of this has been. But if anyone ever does, my answer would be that it was the public schools. A link to the following trailer, a prize-winner at the Vail Film Festival, and, I guess, looking for a distributor, is something I've just seen, my head in the sand as it's been these last few weeks and months. The title of the film is "Certain Proof: A Question of Worth." I don't cry about much anymore, but I did when I watched this--all of those memories are still raw, my shock and anger still there, just below the surface:

From the moment Robert entered preschool, I had to prove, or he had to prove, that he was worth something. Just to sit at the table. For years and years, it was like this. And he entered the public school system in the fall of 2000, before the current era of why-do-I-have-to-pay-for-it politics. Only disabled children have to prove they're 'worth' something--and worth sometimes becomes a moving target--before they can enter and while they proceed through elementary school. Typically developing children do not, no matter how bright or dull they seem to be. I used to wish, rather bitterly, that every parent was forced, upon entry to kindergarten, to submit their child to a test that would determine the educational outcome of their child. As in, we can see by Debbie's vocabulary base at this point that she will only be capable of going to community college--so we'll prepare the transfer paperwork to send her to the appropriate school.

My son didn't have a diagnosis, and, even if he did, it seemed outrageous to me that anyone could predict who he would be at 18 when he was only five.

The problem with educating children with disabilities is that teachers and administrators assume that the fact that they have a disability is their educational commonality. And, therefore, it makes sense to segregate them in a single classroom. Or teach them in isolation, away from the stimulation of their typically developing peers. After living in this world now for close to 13 years, I can tell you, emphatically, that all disabled children are different, that their disabilities differ one from the other, that educating them is a matter of teaching to them as individuals, and that, for the majority of children with disabilities, even the most severely disabled, being taught in an inclusion classroom with individual supports will get them the farthest down the road.

I've had to listen, over the years, as a school physical therapist (who had probably never refreshed her credentials in over ten years) tried to insist that she had the observational powers of a neurologist. As his first grade teacher told me that there was no need to explore other communication devices because raising one hand for yes and one hand for no was all that Robert would ever need. As a special ed representative from the County, at a meeting where we were all lawyered up, told us that dry-erase boards were sufficient for Robert and repeated, like a mynah bird, low tech, low tech, until I thought it possible I might just leap onto the table and slap her. As an aide assigned to Robert told me that she didn't have to put Robert into his Halloween costume for the school parade after I had carefully packed it in his backpack. As the same aide told me all she was required to do was push Robert into the classroom and park his wheelchair. As his kindergarten and first grade teachers repeatedly ignored my suggestions for adapting his homework using PCS tiles (how his work had been adapted in his public special needs preschool), and ignored my suggestions meaning they simply did not respond to the notes I sent into school or to my emails.

I could go on, but I think we've probably all had a sizable dose of pathos for today.

Typically developing children do not have to prove to anyone at any time that they are 'worth' anything to remain in a public school classroom. They do not have to prove that they will not steal a car or go to jail. That they will not get pregnant at 16. That they will get into Harvard. Or even into Montgomery College, our area's flagship community college. They do not have to prove that they are capable of learning a trade or that they will be reading on grade level when they hit sophomore year in high school or that they will not develop a drug habit. And even if those things happen to them, they can be assured that, in most states, once their problems are identified, they have routes back into the system.

But because my son can't speak, he has had to prove that he is 'worth' something just to be part of what everyone else in this country takes for granted: the public schools.  Speech is where people draw the line about who is or is not considered human.

For many parents of children with moderate to severe disabilities, school is the juncture at which we realize that society will only take us in under certain conditions. That whatever romantic fantasies we had about acceptance and community are 'unrealistic'.

A moment that I return to occasionally on this blog is the moment where I participated in a poetry workshop at a university in which a fresh-out-of-college student presented a poem about people with disabilities that blatantly objectified them--after a class discussion that preceded the analysis of student poems in which we all agreed that Wallace Stevens' objectification of certain categories of people was disturbing, if not wrong. I pointed out the objectification of disabilities. And I was virtually black-balled. When I tried to discuss the matter with this woman, to try to explain myself to her and even to try to accept some of the blame, she told me that her mother, a speech therapist in the Maryland public schools, had told her that I was just one of those parents who couldn't accept the fact that my child was different. That parents like me had unrealistic hopes for their children and that she shouldn't pay me any attention. I have never gotten over what I have come to understand as a profound act of verbal cruelty. And, yes, that was my wake-up call--from that point on, I realized that the therapists who worked with my son in the public schools most likely thought very little of him at all. This happened in 2002, when Robert was five.

By repeating this anecdote, I'm trying to impress upon all of you out there, whomever you may be, why some of us react so strongly to the word "retard," the theme of my last post. As I said before, it's disingenuous to believe that the word exists as a synonym for "stupid" outside of its connection to people, and especially children, with disabilities. The implied comparison to people with disabilities is what gives that word negative force and power. And, yet, the gross entitlement of people to use the word constantly shocks me, just as my encounter with the above poet shocked me--that people feel entitled to tell me who and what my son can be, just on the basis of his disabilities, without even meeting him.

These perceptions of children with disabilities are so wide-spread that they affect my interactions even with poetry and literature. And these perceptions have material consequences for these kids--education and medical care, to name the two biggest categories. If you have absorbed from your mother (who supposedly 'helps' students in the public schools) that children with disabilities are not 'worth' anything and that social integration is unrealistic, you are contributing to a social order that may someday come back to bite you when you are, perhaps under surprising circumstances, forced to demonstrate your own 'worth.'

I have no answers this evening. For worth, for value, for the expense of including my son in society. I can only hope to see this film at some point. And I can only help that empathy can create something better. I'd break out into a rendition of "I'd Like to Buy the World a Coke," if that weren't so ridiculous. Ah, the 1970s. Just shows my age. And my idealism.

Unrealistic is my banner and my shield.


Ramona Quimby said...

Maybe unrealistic, but needed, desperately, Jeneva. When my sister was born in 1979, profoundly deaf, my parents were told she should be sent, immediately, to a 'special place for dumb kids' which meant the deaf boarding school downstate. And that if they kept her, they should never teach her sign language because it would make her 'more retarded.' My parents ignored the doctors, learned sign language, found a town that had a deaf program integrated into the public schools, but even there she and the rest of the deaf kids were lumped into the same classroom with every other child with a disability, with one teacher, maybe one or two aides. Of course, being deaf is perhaps an 'easier' disability that Roberts, but boy--once you're outside of the mainstream, your humanity quotient seems to decline steadily. She still struggles, at 32, to be treated like a full human being, to find work, to be treated like she's worth just as much as the rest of us. Which she is. Which Robert is. Of course.

I hate that word, Jeneva. Your first post on this reminded me why, and started a heated discussion with my students at the community college, who throw it around easily. Words matter; they shape and are shaped by how we see the world, the subtle ways we assign meaning, value. I am so glad you write so eloquently about this.

Elizabeth said...

Jeneva, I've been in contact with the guy who made the film in Raleigh, North Carolina. It turns out that we went to college at the exact same time, although we didn't know each other (he knows some of my friends, though, who are also documentary film-makers). In any case, I'm helping him to publicize the screening here in Los Angeles on June 4th. I'm going to send him this link.

You are a marvel, by the way. I'm not sure what I'd do without you here, articulating my deepest thoughts, muddled in my own brain.

A said...

"These perceptions of children with disabilities are so wide-spread that they affect my interactions even with poetry and literature."

Yes, yes; even in the realms of poetry and literature. There's something so particularly harsh and disappointing in that, isn't there---two realms in which one looks for the ordinary to be penetrated to show glimpses of essence. Illumination. Hold on to your idealism, Jeneva. I hope those who wander both in the worlds of words and of the beings whose language is hidden inside them will keep working on creating a revealing canon. It is very difficult.

What's funny is that a great majority of NT people are, I think, in that second category: beings whose own language is hidden inside them. They don't even listen to it themselves. So little self-reflection. And their lack of awareness can result in some of our precious, sensitive children having to rely solely on self-reflection to stay whole, because what the world mirrors back toward them is a crude and distorted fun-house image of only their deficits. Who among us could survive that unscathed?

Anonymous said...

People with disabilities are no different than anyone else, each one unique with different and also basic needs. My daughter doesn't not do well in an integrated classroom, it is too overwhelming for her. We did try it, she smashed her two front teeth during that time and had her hands tied behind her back. She thrives in a segregated program. Each child is unique and kids/people with special needs should not be lumped together but looked at on an individual basis.

And her teacher is awesome.

Anonymous said...

I realized as I reread my comment that it sounds like I don't agree with you. I do agree with you completely.

Megan said...

Thank you. Like Elizabeth said, you have an amazing way of putting down on paper exactly what I am feeling. As we are trying to decide what to do about Drew's daycare situation this makes me realize, as a feared, it is not going to get any better. Everyone keeps telling me it will be easier for us when he turns 3 and can get into the school program. Not so sure I want that for him. Sometimes I feel like I am just pushing a boulder up a steep hil

Ray Ellis said...

Hi Jeneva,

I'm Ray Ellis, director of the documentary, "Certain Proof." Thank you for sharing the link to the trailer on your blog. I just wanted you to know that the film will make its U.S. television premiere on the Starz Kids and Family Channel on Sunday, March 3rd at 8pm Eastern Standard Time. The film's website has more information about the film at
Thank you very much for your blog. Kind regards, Ray Ellis

Anonymous said...

I understand your anger and frustration - to a degree. The teachers in our school are overwhelmed with classroom size as it is and the difficulties involved. I would think if you really want one on one teaching for your child, you would want to seek out a school that specializes in teaching disabled children.

jeneva22 said...

Dear Anonymous: I think you have missed my point entirely. First of all, I noted that individuals with disabilities are individuals first, and that grouping them together on the basis of the broad range of their disabilities is not a helpful teaching tool, unless, perhaps, the disability has a large cohort. My son does not belong to such a category.

Second, why should I expect less of the public schools than any other parent? My taxes go into the system, too. Federal law requires that schools educate children with disability. Why should I have to pay for a basic education for my son when everyone else in this country can have one for free? People argue about the "cost" my son creates--well, my son can't participate in the vast array of sports and extracurricular activities provided by the school system at no charge. Those cost an enormous amount of money.