Tuesday, September 25, 2007

Can you hear me now?

Recently I've been in Meeting Heaven (or Hell, depending on your perspective). It's all for a good cause though.

I consider myself an advocate for the education rights of Special Needs children, particularly those children with deafblindness.

One group I'm involved with is working on the Deafblind State Plan. The plan is a vision of what the future, in education, looks like for these kids. It has been seven years in the making, and we are wrapping up this year (touch wood). It feels good to provide input to these groups who care so much about our kids and then actually see it put into action (that last bit hasn't officially happened yet, but I'm being optimistic that it will).

In the other group I've been involved with, I'm serving as a fill-in for an advocate who has had scheduling conflicts. It has been a very interesting group, to be sure. The deaf, blind, and deafblind perspectives are being represented and are trying to work together for improving the education of these students with such special needs.

I've been amazed at the movement there is to separate the educational efforts into Blind only, Deaf only, and Deafblind-lumped-together-with-anyone-else-who-is-blind-or-deaf-and happens-to-have-additional-disabilities. This movement is coming from parents of higher functioning deaf or blind kids.

I'm sure they only want the best for their children. What better motive is there? But, it blows me away that they are unable to grant the same rights to all deaf or blind children. In fact, in their minds, a student isn't deaf or blind if they have other disabilities as well.

It is like they are saying blindness and deafness can only look a certain way, and all students who do not fit their skewed definition should be foisted back on the local school districts to fend for themselves. Without the supports of sign language, Orientation and Mobility training, or communication systems.

Parents who've been told that their children were holding back the progress of 'regularly-abled' children are now saying the same thing to deaf or blind children who also have other disabilities. It is the pot calling the kettle black. It is the segregation of the 60s and 70s coming back.

It is akin to saying, "I'm sorry, you're not 'pure' deaf or 'pure' blind, you may not sip from our educational fountain." And that kind of talk makes my blood boil.

I realize that these parents are merely advocating for what they think is the best solution for their children's needs - which is exactly what I do in these meetings. However, we go about it in very different ways.

Or, do we?

This experience last week has got me thinking, how do I sound to others when I am advocating for my son and other students like him? Am I offensive? Am I considering all view points, or am I narrow-minded? I'd like to believe that I am diplomatic and always keep the big pigture in mind, but that's probably not the reality.

I do know that I would never suggest that children who require more intensive methods of instruction are not worth the resources we expend in their behalf. I would never imply that my son cannot excel if certain students are in his classroom.

Rather, I tend to err the other way. If, for example, someone has a hearing and vision impairment, it doesn't matter what level of cognitive function they are believed to possess - communication is the major barrier to their education

It is not the student's fault if there is a failure in the system. Parents need to first come up with their vision of the future, and then they can make it happen. If they quantify the problem (how many students are there really who they feel are detracting from the needs of the higher functioning kids?), then we can figure out how to fix the problem (how many more teachers do we need to hire for everyone to have the best chance at success, and how much will it cost?), then that amount can be lobbied for

I'm afraid I'm not doing a very good job at explaining this movement. But, take my word for it, it's sending us back to the dark ages when people hid away the severely handicapped.

Well, not on my watch I tell you!


Summer said...

I don't know why I'm surprised at how rampant discrimination still is in so many different situations.
I'm glad these kids have someone like you looking out for them.

Lisa M. said...


I understand what you are saying, completely! I hope the battle is one, and I hope not on my watch either.

It is so hard.

The one thing that has really surprised me more than anything is the different groups, (so to speak) in the disability world, that because of the way lobbying and government is ran, are literally PITTED against each other.

Some of us families who have children with multiple disabilities are effected across the board-

For instance, if I decide to talk to the legislature, what do I tackle first? The deafblind project? DSPD funding? Early Intervention funding? Mental Health? All of these entities, and their funding, EFFECT Ethan.

You're right though. IF this happens, we will be going back to the dark ages.

If there is anything I can do, will you let me know?


athena said...

what are higher functioning deaf or blind kids?

Corrie said...

Summer- I can understand parents wanting more for their own child, but not at the expense of others. Discrimination is always ugly.

Corrie said...

Lisa M - it's true, the various groups are vying for funding from the same pot of money.

Right now, I think it will be okay. They will end up having to start their own charter school to get what they want.

I will keep in touch with you on this.

Corrie said...

Athena - higher functioning deaf or blind kids are those who do not tend to have additional disabilities. They can usually function at or near grade level once their hearing or visual needs are accommodated.

The parents are off-put that the kids with even more needs seem to be taking away from the education their child 'should' be getting.

While I can understand their frustration, I don't think they have found the right solution yet.

Mama Zen said...

Special Education is such a funding nightmare! Unfortunately, the federal government has never fully funded it, and the kids pay for it.

athena said...

thanks for the explanation. i can see how this can be a complex issue.

Corrie said...

mama zen - the real problem is too much paperwork and not enough dollars

Dedee said...

I hope that you can keep fighting for this.

(Isn't too much paperwork and not enough dollars the problem with government in general?)

Corrie said...

dedee - welcome, and you're right it is the general problem