Monday, December 01, 2008

I digress in all that I do, and militantly

For those of you who tune in occasionally, sorry I haven't posted in a week.  For the most part, I've been processing a lot of issues related to disability and my son's education.  Because processing this makes me feel vitriolic, I've been avoiding posting.  

Robert's education has become the perfect storm of an ephemeral "diagnosis," an educational culture at MCPS wedded to faux-developmental theories, a County steeped in significant soft bigotry toward the disabled, and the slow process of medical discovery and medication adjustments. 

Things that bother me:

1. The many people who work within special education in the Montgomery County Public Schools (MCPS) who think of educating children with multiple disabilities as some sort of bizarre "charity," rather than a way of fostering human potential.

2. The energy and financial resources (public money, mind you) that MCPS sinks into legal obfuscation of federal statute, rather than into disability services.

3.  The failure of the County to think through alignment of services to disabled children, which wastes public money by sending all parties running in different directions, duplicating effort, failing to acknowledge the need for the persons with the most invested in their children (parents) to receive appropriate social services supports.

4. The inability of the Special Education department in MCPS to fully appreciate the disabled as persons with aspirations and needs.

5.  The lack of conscience among County education professionals that prevents them from acknowledging that the ability to communicate in as sophisticated a manner as possible should be considered a matter of human rights.  

In short, it disappoints me that this County is running decades behind in terms of its commitment to the quality of life of children with disabilities.  Either that, or my standards are way too high.  But my standards involve treating my child to simple human dignity, which is a far cry from what he has been offered by certain people in this school system.  What irks me is the attempt by County education professionals to reduce all disabled children who can't attune themselves quickly to the curriculum to a single mass of undifferentiated people with "developmental delay" or "cognitive problems."  

The problem with childhood disability is that, unfortunately for our cookie cutter culture, children with disabilities are profoundly different from one another.  Which is why we have a federal statute that attempts to explain to educators at the state level that education must be individualized.  Which is met by cries of rage and frustration by intelligent people perfectly capable of thinking outside the box and accommodating this--but they would rather not be inconvenienced.  Well, gosh, my whole family would rather not be inconvenienced a thousand times a day, but, instead, we sink our emotional energy into thinking about how to improve, even minimally, our quality of life, how to look at things differently, and so on.

The accommodation of persons with disabilities and their integration into what we think of as "normative" society is a two-way street.  I had a mostly unsuccessful conversation with a professional at my child's school last week in which I tried to explain that concept.  That the point of an inclusion education was not that the child with "challenges" heroically overcome them and 'normalize' him or herself, but that the society in which the child found him or herself attempt to figure out alternative methods of integrating that kid.  That we should not be using a measuring stick or sorting mechanism in the public schools in which those kids who can meet the standards or expectations of "normal" people are allowed access to education, while those who cannot are relegated to counting change, figuring out bus maps, and going on field trips to pizza parlors.  That the challenge is posed in equal measure to us, the neurotypical, to figure out how we can change and adjust.  

But, apparently, I digress.


Elizabeth said...

I'm going to substitute Los Angeles county for your county and then print it out.
Brilliant, concise piece. Bravo. Where's the op-ed?

jeneva said...

Thanks, Elizabeth. But, you know, I'm not sure I can be a diplomat (op-ed writer). I'm sure I'm the sort of revolutionary, who, after the revolution, the other revolutionaries decide to throw under the bus because she just won't shut up.

There's a publication you can read (a PDF) called "NCLB and IDEA: What Parents of Students with Disabilities Need to Know and Do." It's good and explains stuff in pretty clear language. Not that the County Special Ed bullies won't keep trying to kick sand in your face.

You know, there's no one happier than me that the Bush Administration is finally over, but they actually started out with a sincere commitment to students with disabilities in NCLB, a commitment shared more by OSEP at the U.S. Dept of Ed then the Congress--but they all let themselves be bullied by the school administrators.

Elizabeth said...

Hi! For some reason, I can't cut and paste that web address. Can you send it to me via email? Also, I had lunch today with beautiful Vicki Forman. She said that she's going to visit you in December. Lucky you and lucky her!