31 Days of SMA: I Almost Couldn’t Help Becoming an Advocate

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by Bionews Staff |

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Photo courtesy of Ben Mattlin

Day 31 of 31

This is Ben Mattlin’s (@benmattlin) story:

The disability rights movement in the U.S. is known for many achievements — the Individuals with Disabilities Education Act, blocking buses to demand accessible transit, the Capitol Crawl. But its crowning accomplishment to date is the Americans with Disabilities Act or ADA.

Passed 31 years ago, the ADA outlawed discrimination against disabled people. In theory, at least.

But just because we have rights on the books doesn’t mean they are always honored or enforced. It doesn’t mean fairness is assured. It doesn’t mean we have justice.

I was reluctant to come to the cause. Activists always seemed so angry, and I wanted nothing more than to get along with people. Yet as a lifelong wheelchair user, due to spinal muscular atrophy type 2, I kept coming up against obstacles and prejudices. If I wanted to go on living my life the way that felt right to me, I had a lot to combat. I almost couldn’t help becoming an advocate.

Besides, the rights community answered so many gnawing questions I’d been ignoring. For instance, why do some people treat me differently? Why do I have to make a special effort to get people to respect what I have to say? Why can’t I get a job?

The movement gave me more than an agenda — it gave me a perspective. It taught me that the bulk of my most vexing problems came not from within but from without. In a fully accessible society, my limitations could practically be reduced to mere inconveniences.

An added benefit: Once I learned what the disability community had accomplished and continues to fight for every day, I began to feel better about myself. I felt proud to be disabled.

I want to keep moving our community to a better place. For many, enforcement of basic rights remains a dire necessity. Even life-and-death dire. I only hope I can be a good enough advocate.

Will more members of my SMA community join me? There is still so much to do. We may not always agree, but the movement needs all the voices and energies it can get.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.