Monday, January 26, 2009

Where Advocacy Began (for me!)

When my daughter was a baby there was a program for toddlers at our town hall designed to give the kids a chance to play and moms a little break. I loved the idea of this program, used it fairly regularly for my older kids and looked forward to bringing my youngest there when she was of age.

When the day finally arrived I took her to register. I knew there several other moms who were bringing their kids to the program so Jenn would have friends there. I was psyched.

I walked into the office carrying my daughter, filled out the paperwork, turned to speak to the director and was turned away.

“What?? Why?”

“Well, we don’t have kids like her here. We aren’t equipped. What if she cried?”

I said, “You’re running a program for 2-4 year olds—don’t they all cry?”

She was firm and she told me I wasn’t to think badly of them because they had inclusion programs, this just wasn’t one of them. I said I didn't inclusion was a program, that it’s the opposite of exclusion, but she was unmoved.

“Nope, she isn’t walking as well as the others, she can’t come. It wouldn’t be safe.”

I offered to provide a stroller for her, a stander, special toys. I insisted that it was ok with me if she fell down (since she also fell down at home.) But they were adamant. They did not take children “like her.”

Now, I had been through a little introductory advocacy training and had sat through a few IFSP meetings (IEPs for babies) and I had heard about disability discrimination. But no one had ever looked at MY darling baby and just said no before.

When I got in the car I burst into tears—I actually had to sit there for a bit because I couldn’t see to drive for a few minutes… but by the time I got home I was LIVID.

My town—to whom we pay taxes—was not going to look at my family and say, “We like this one, and that one, but that one is not ok…”

Oh no. They were not.

I walked in the door of my house, handed my daughter a graham cracker and called The Advocacy Center. They were aghast too…in fact they were arm wrestling over who could take the case—they all wanted it.

The lawyer I got to speak to said, in no uncertain terms, “No matter which minority you belong to, access is the civil right. There can be no opportunity, no equality without it.”

He sent me back to the program a few days later for some conversation, armed with knowledge and terminology. I am proud to say I was calm, polite and coherent.

And, it did no good at all.

And then the lawyer called the town.

After that the town called ME to make sure Jenn was registered at the start of each season. (And she did just fine in their program.)

Some people questioned whether we should speak up, whether we should just go somewhere else, do something else…

I was not capable of that. On any level. At all.

I knew in my heart that the lawyer was right. Segregation and inaccessibility keep people from the tools, relationships and opportunities to belong, to grow, to achieve and to contribute.

Access may not be everything, but access comes first.

Access opens the door.

Picture from here.


rickismom said...

Yes, I haveoften found that just a letter from a lawyer works wonders.......
I am floored though, that they would have had such an attitude.

william Peace said...

Great story. What worries me when I read about a parent or adult asserting their civil rights is how many people simply accept the status quo. How many parents of a child with a disability let organizations and school segregate their child to a "special bus" or "resource room". The Catholic school I attended tried to do this to me, shunt me off to the side, when I became disabled. My mother stood her ground and refused to let me be treated any differently. She defended my equal rights and I learned a very valuable lesson at a very young age.

Terri said...

Thanks, rickismom! Yes, our advocate was pretty stunned with them as well.

Bill, I agree. This was the incident that convinced me that getting Jenn ready for the world was not enough. I needed to get the world ready for her as well. Some parents seem to find that intimidating. Instilling courage is one of my goals--because it teaches society and it teaches our kids (as it did you) that they have value.

terena said...

yes!!!!!!!!!!!! I'm sending this post to several friends who struggle every day to keep fighting for what their child needs. It gets so hard sometimes, but we just have to keep trying. That's why we help each other, why I read and write blogs, and why I stand up every time someone says my child "can't." Oh yeah... just watch.