Tuesday, May 01, 2007

A Day Against Disabilism

Every day I am amazed by the rampant disabilism in special education. Here is an education system that is supposed to be designed to help, to support, to give these kids a chance to live independently and get an education; but instead you get full-pitched battles for resources that are not only limited, but designed to meet needs your kid doesn't really have (and in fact, I am finding most of the kids in the system don't have.)

Special education here is designed for severe mental retardation- so long as you don't also have a physical disability. We have a brand-new school here, an upper elementary built from scratch over the last two years. I have a friend who has two severely physically disabled children- whether they are mentally retarded as well is a matter of debate, since their physical disabilities make it impossible for them to acquire speech- and they are debating whether or not to send them to the new upper elementary school. Apparently, the special education classroom would have to be altered to accomodate them because of their wheelchairs and physical therapy needs.

Why? These people were aware of these kids in their system when construction- and even design- began. Besides, they likely won't be the only kids in wheelchairs they'll ever have. Why, in this day and age, would you design a BRAND NEW SCHOOL that is not fully accessible?

Now, let's go back to the speech thing. These kids' mouths are not formed properly, and speech is probably physically impossible for them (I defer to her expetise of the mom in this matter; I don't know the particulars). Little attempt has been made to give them an alternate form of communication. You'd think the school would work hard to give them some form of communication, even if it is simple switches or large buttons with pre-recorded phrases, so that these guys could at least communicate some of their needs. I am thinking seriously of buying such buttons for them for the summer, and having my cousin's boys (who are about the same age) record simple messages (like "yes, please!" and "no, thank you") and see if these guys would use them. They are 8 years old, and have no way to tell their mom they need something, other than tugging on her clothes. And why? Because they can't speak, they're not supposed to communicate?

These are the challenges of two boys who have obvious, clearly visible disabilities. People know they need help, it is blatantly obvious they need skills, accomodations, equipment, nursing care, aides, respite, the works. They have terrible problems getting these things. It took them years to get medicaid waivers. The school doesn't recognize their skill needs, and they have no academic goals for them- any progress is considered sufficient. I can only assume that is because such severely disabled children are not usually expected to live to see Upper Elementary- by people without disabilities. They are "low functioning" and will "always be dependent"... so the attitude- more or less subtle- is, "why waste resources on them"?

Skip to my own child. Joey talks. If you are not familiar with Oobi, Little Bear, Pinky Dinky Doo, Blue's Clues, Cars, Toy Story, and Franklin, you might miss that every word he says is based on words he's heard before. He likes other children, and has some stock phrases to start contact, but then he doesn't know what to do, especially if a children reacts in an unusual way- which is any way other than how Andy would react. He knows his letter, his numbers, his colors, can write his name, and can match and sort and make patterns- if you can get him to sit down long enough to show you. What chance has this child, whose disability is not so apparent, have at getting accomodations in a world that wants him to be invisible?

At least, they say they want him to be invisible- but then won't address anything that is actually visible, or do it ways hat would be sublte and acceptable in a "mainstream" environment. Needs to chew? Gum is a no-no, lets give him a chew toy. That chewing gum is far more "invisible" than having a plastic tube in you mouth is beside the point. And who needs brushing? That takes too much time, it has to be done every two hours, after all! Food issues are the parents' problem- we put the food we are serving in front of him. But you want to send in food? That's too much work for the teacher and aide. Social skills? Toss him in the gym with the HeadStart kids and hope he figures it out! After all, that's how other kids learn social skills...

And these people are special educators- he's in self-contained environment, not even an inclusion setting!

What is disabilism? It is an attitude that people who are not facing the challenges of disability are inherently superior. That their ways of coping and interacting are innately superior and preferred. That people with disabilities are, somehow, not as human, and have less right to try for independence and education. That people without a disability somehow know what is right and proper for people who do. That people who need support and accomodation are somehow children; or if they are children, that they are babies.

It is also the assumption that people shouldn't need to be accommodated, shouldn't need support, shouldn't have "special needs." The shock special education personnel keep displaying that their kids might have special needs is discouraging. How far would their day get without their coffee? Their few minutes of favorite music? Perhaps a cushion on the driver's seat, or hot water in their shower? Perhaps they like their food a certain temperature? We all need to be accomodated in certain ways to cope with living and functioning. To say my child's accomodations are unacceptable, just because they are unusual or different, is ridiculous. To deny him education in learning to self-regulate is equally ridiculous. It is discrimination.


Heidi said...

Well said. Sounds like special ed is as dismal over there as it is here in the UK.
Best wishes

Maddy said...

That account is the most frustrating piece I've read all morning! I'd like to say pack yur bags and hop on over here - not perfect but a darned sight better than what you're currently experiencing [to say nothing of your pals dire circumstances] We all know people who move to get services but NOBODY should have to do that. Excuse me now, I'll have to go and bite something!

Stimey said...

"What chance has this child, whose disability is not so apparent, have at getting accomodations in a world that wants him to be invisible?"

My son, who we are currently getting tested and evaluated for autism, ably passes for invisible all by himself. He doesn't act out or cause problems. He mostly plays quietly by himself. What he desperately needs is a system that helps him to be visible. Thank you for your part in preparing me to help him stay visible.

mysamiam said...

Gosh, for exactly what you wrote is the reason I am horrified to move. We have been up for a possible move for the last two years in my husbands position. I researched the districts in other states where we were first told to check out. I was amazed that according to my sons IEP they would put him in a self contained classroom all day. The district we are in is amazing with amazing supports so far. I am so sorry for the struggles you are going through. I am a teacher, and often times do not want to tie myself to the profession. Chewing gum sounds much better to me than the tube chewies and stuff. Arrgg!!! On a side note, have you tried the wrist ones they can wear under their sleeve if needed from Abilitations?

I wanted to thank you for your comment today on my blog "SAM I AM". I can't reply back to you on my blog how I feel about the other childrens parents. What I can say, is that I have sat on the sidelines of a soccer field with them for 2 years. And lets just say that the apple doesn't fall far from the tree. And addressing the parents hasn't done, nor will do any good anymore. Thanks for your kind words! Peace!

Club 166 said...


I used to think your district was as bad as ours.

Now I see that (at least in some ways) it's worse.

You know things are bad when you don't have to look up the number to your lawyer.

Attila the Mom said...

I sooo get your frustration! Fabulous post!

Unknown said...

your post was wonderful. School can be difficult, especially for children with a disability visable or not.

I work with children and families to find computer access solutions to allow children reach their potential.

The best advice I can give is keep advocating for your child.


Connie said...

Wow. This is disturbing on so many levels I'm tempted to say "you're kidding right?" But sadly, I know you're not. Unbelievable.