One thing that became apparent as I listened to our speakers at the Partners in Policymaking class this weekend was how huge the disability community is (over 53 million Americans at last count).

The other thing that became apparent was how splintered this “minority” is as a group. We have hundreds of organizations representing every possible disability we could have. In fact, I got an email today about Non-verbal learning disability (NLD). Lest you think I’m making light of this disability, I know that it’s real and a serious problem for many. But the email claimed that it was a disorder on the autism spectrum that had not been officially recognized.

And it reminded how desperately each disability (and the people who have it or who parent children who have it) fight so hard to get their disability recognized with an official diagnosis. The interesting thing is that human beings are individuals. And you don’t have to hang out with children with disabilities very long before you notice two things.

First, that not very many children fit the EXACT group of symptoms described for a specific disability. And that there are many disabilities for which many symptoms overlap.

Yet, we’re all guilty of grabbing on to the first diagnosis we can and hanging on for all it’s worth! And this is fine if that diagnosis, its treatments and its support group serve our purpose. But the truth is that each of us is operating in our own little silo. And the picture is so much bigger.

In 1999 LuLu was diagnosed with reactive attachment disorder (RAD). It didn’t take long to learn that RAD is rooted in trauma and the professionals added PTSD to her diagnosis. Yet those two disorders didn’t explain many of her symptoms and as she started to heal from the attachment problems yet still have so many other problems, some professionals scratched their heads. So more and more diagnoses were added. Frankly, I’m pretty sure that most are true, or are at least a defensible position for the professional to take.

Yet if the autism community is working on one type of school reform and the Downs Syndrome association another. And no one has thought of asking the families struggling with cerebral palsy, intellectual impairments or blindness what they think, then we’re all fitting many of the same battles over and over again.

Chances are if laws and policies will benefit one group of children with disabilities then they will benefit even more. We have to remember to the non-disabled world we are a minority. And let’s face it…we all look alike (only partially kidding). Many of us look like parents of children with odd/scary behaviors or don’t look quite right. We may look permissive with our children or pushy with our advocacy to those on the outside.

But we share much in common with many of the other parents of other children with disabilities…all disabilities. And together we have the strength in number we need to really start making change for our disabled family members.

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