I Virtually Could not Assist Turning into an Advocate

Photo courtesy of Ben Mattlin

Day 31 of 31

This is the story of Ben Mattlin (@benmattlin):

The US disability rights movement is known for many accomplishments – the Individuals with Disabilities Education Act, blocking buses to encourage accessible transportation, the Capitol Crawl. But its crowning achievement to this day is the Americans with Disabilities Act, or ADA.

31 years ago, the ADA passed discrimination against people with disabilities. In theory at least.

But just because we have rights to the books doesn’t mean they will always be honored or enforced. It doesn’t mean that fairness is guaranteed. It doesn’t mean we have justice.

I hesitated to get down to business. Activists always seemed so angry and all I wanted was to get along with people. But as a lifelong wheelchair user, I repeatedly encountered obstacles and prejudices due to type 2 spinal muscular atrophy. If I wanted to get on with my life the way it felt right to me, I had a lot to struggle with. I couldn’t help but become a lawyer.

Also, the rights community answered so many nagging questions that I had ignored. For example, why do some people treat me differently? Why do I have to go out of my way to make people respect what I have to say? Why can’t I get a job?

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

An added bonus: After learning what the disabled community had achieved and fighting for it every day, I felt better. I was proud to be disabled.

I want to keep our community in a better place. For many, the enforcement of fundamental rights remains an urgent need. Even life and death. I just hope I can be a good lawyer.

Will other members of my SMA community join me? There is still so much to be done. 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 publishes one story per day for SMA Awareness Month in August. follow us on Facebook and Instagram For more stories like this, use the hashtag # 31DaysofSMA or read the complete series.

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