disapproving kitty

Wednesday, February 8, 2017

TL;DR: Disabled People Deserve Independence, Too.

Many years ago I had a student named Justin. He was a uniquely talented writer and poet, with a sense of humor and sensitivity that were far beyond his years. Also, he had cerebral palsy. He was the first student I'd ever had who used a wheelchair.
While I'm hopeful that he learned a thing or two from me, I know for certain that *I* learned a ton. I learned that the world is not very kind to kids as different as Justin. Crippled and gifted? Whaaaaaa?
I'm afraid that a lot of us failed him then, to give him all he deserved, and as it turns out, we still are. Failing him, I mean.
Every couple of years, apparently, it's necessary for him to go speak on behalf of all the people who need aides to help them do all those things the rest of us take 100% for granted, like, say, using the toilet alone. I wanted to join him as he went to testify, along with 20 of his friends (whom he never would have met if it weren't for aides that allow him to go to college.)

I can't go, but I can write some testimony for the hearing.

In case you're wondering, it's for rule 5123:2-9-03 (Home and Community-Based Services Waivers - Limit on Number of Hours an Independent Provider May Provide Home and Community-Based Services in a Work Week).  You can read about it here: http://bit.ly/2k5qhLt. It's pretty dry and reasonable sounding until you imagine: what if I had to live only where I could find 5 people who were reliable and capable and willing to be my aide for not all that much money? And if I can't do that, then I have to rely on my family to do it for free? Still sound good?
Didn't think so.

Here's what I wrote.

Dear Ms. Phillips and Members of the Hearing Committee,
My name is Rachel Nelli, and I am a public school teacher of 18 years, all of it in the great state of Ohio. One of my most memorable students was a young man named Justin Martin, who has CP. Recently, he brought to my attention that the Federal government has mandated that aides for the disabled must be paid overtime. Ohio’s Department of Developmental Disabilities, in response, is creating a new rule to mandate that overtime for aides be illegal, so that we won’t have to foot the bill.
Tell me then, please, how much would it cost for you to give up some of your freedoms that you take for granted every day?
How much to be able to get dressed in the morning? Make your breakfast?
Tie your shoes?
Use the bathroom by yourself?

How much is your independence worth to you?
How much is it worth to you to travel for more than 8 hours so you could do your job, visit your family or take a vacation?
How much is it worth to you to be able to get out of bed at night to use the bathroom on your own?
A dollar?
A hundred?
What would you do if you could never again choose to live somewhere where providers

weren’t easy to come by? Or if you wished to travel or work or have any kind of independence at all where you wanted to have it, just like everybody else?
How much do you deserve your independence?
I shouldn’t have to ask you that question. You should be appalled that I would even question your right to live your life the way you wish to live it.
I also shouldn’t have to ask you why you think that another law-abiding, hard-working (and he works harder than anybody I know) American should not have the same rights and independence you take for granted.
If you would not give up any of those freedoms I mentioned above, then you have no right whatsover to deny them to a disabled person. We are either a society where all men are created equal, or we are a society content to have second-class citizens. The latter is unacceptable.
And please, don’t talk to me of money.
You are fortunate enough to be addressed today by one of the finest minds I ever had privilege to teach. I cannot imagine what his life would have been if our nation hadn’t decided that children with disabilities had the same right to an education that every other child had. When I went to school, and likely when you did, too, kids in wheelchairs didn’t go to regular school. Kids with cerebral palsy went to a special school where they and all the differently-abled were warehoused and locked away with no independence and few freedoms. IDEA meant that not only did Justin go to regular school, he got into the gifted program. He. Is. Brilliant.

Educating “those kids” costs a fortune. So does caring for “those people” when they grow up. We do that because we are ALL created equal and endowed with the right to pursue happiness, and nowhere in our laws or in our moral code should we say “except when it’s not convenient.”
Because we know it is right to spend money to afford the disabled the same opportunities we take for granted is how I got to meet Justin. I had the privilege of teaching him, and learning from him how unequal we still are. Access to aides 24/7 is what he needs to come close to having the kind of life you and I expect for ourselves, and for our own children.
If you vote today to deny Justin the caregivers he needs, then you are denying him the very freedoms you grant to yourself. Is the amount you are saving worth his freedom? Would it be worth yours? Would you give up your independence, or that of your own child to save that money? I suspect the answer is a resounding “no.”
Before Justin was my student, I was blissfully and shamefully unaware of what it is like to be disabled in this world. How you can work for the DoDD and not already know this I do not know, but I ask you to listen and learn. As a teacher, I tell you this man has information you need, because without it you are going to fail this test. Fortunately for you there is only one question: Does Justin deserve to have the same independence as you?
Please, don’t fail.
Disapproving Kitty

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