On The Value of Advocacy -  Charlotte Cronin

“Advocate” is such a big word.  It’s intimidating. I’ve never thought of myself as an “advocate.”  I’ve always just thought of myself more simply, as Daniel and Anna’s mom, just doing what needs to be done so that they can have the best lives possible.

I never thought I would or could fight so hard for them.  But, Daniel is 14 and in “the Autism Spectrum.”

In the beginning, I was pretty naïve.  I’ll never forget the day I got a membership form from our local Arc.  Daniel was about 2, in Early Intervention, and things were going pretty well.  I thought, “Well, I’ll fill this out.  But, I’m not joining any committees!” 

Slowly, as he grew, I learned that many things don’t “go well.”  I learned that the systems that are designed to support my son and our family are often hard to find, hard to access, available in some places and not others, full of “cracks”, and often, under funded, stretched thin or with long waiting lists. Even scarier, the services he would need as an adult have often gone unfunded for new enrollment for years.

And I discovered that somewhere along the way that many of us had lost our voices.  In fact, in a way, we had given them away. We all thought that “things” were going pretty well and that “others”, professionals, could speak for us. 

But, no one knows what we need like we do.  No one knows what our dreams are like we do.  No one can tell our stories like we can. We know that every person with a disability is unique and has unique needs. And we have to advocate at every level to make sure the services we need for ourselves and our family members are available and shaped like we would like them to be.

People with disabilities, young and old, are at the mercy of the mysterious winds of government.  Federal governments, state governments, counties, school districts, park districts, a confusing array of programs and services that overlap and contradict each other, that leave big “cracks” that people with disabilities and their families “fall” through.  Most of us deal with this confusion by not dealing with it.  We poke into this program or that agency when we have an immediate need.  We come away delighted to have found help or stunned that “help” can so easily become a burden.  Most often, our search is a reaction to a crisis.  We’re dissatisfied with the school setting.  We can’t find housing. We desperately need respite.  We can’t find funding for a wheel chair or a touch talker.  What about a job coach? Or just a job?  And we wonder, “How did this mess get like this?”  Why doesn’t Someone do something about it?”

That someone is you.  And me.  The only people truly qualified to change the systems that affect our lives are “us,” people with disabilities, and the families of people with disabilities.  

This is the best secret.  Being an advocate is fun.  I have made the most wonderful friends.  Some of them are legislators, some of them are other parents, some of them are bureaucrats, and some of them are service providers.  I have met so many incredible people with disabilities who have shown me the richness of their lives and shown me how wonderful Daniel’s life can be.

I have discovered that I have power in Daniel’s life.  I can change his life.

I have been amazed at the accessibility of everyone, that they are just human and that they want to hear our stories. They need to hear our stories. Most of them are extraordinarily nice people. Most of them don’t have a clue about what parents want for their children with disabilities.  We are the only ones who can tell them.

Being Daniel’s mom has taken me down paths I could have never predicted, and taught me lessons I didn’t know I needed to learn. I have learned that I cannot fail when advocating for my son.  Failure can only come from doing nothing.

“Reach for the stars and you will not come up with mud.”

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On The Value of Advocacy - Charlotte Cronin