The Muscular Dystrophy Community Counts on Accessibility Improvements

I feel strange not writing about the pandemic crisis in this column, but we’re already bombarded with information about it, and it appears we will deal with these issues for a while. So, I will be back in two weeks to discuss how I am living through the crisis. I hope you all are staying safe and healthy.

In this column, I reflect on my experiences in trying to effect positive societal change so we can have true inclusion. I have written several columns about my advocacy work, which includes lobbying in state capitols and with members of the United States Congress. I have also worked with governors to explain the needs of those who need help. I’ve learned that any resulting changes occur over time and are always a battle.

In the past decade, my focus on mental health and aging issues shifted to disability issues. Frustration has packed this time. The Americans with Disabilities Act (ADA) has been around for 30 years, and to be fair, changes have better equipped our society for accessibility. Yet, there are so many gaps in the system, and so many accessibility points are not up to par.

Over the years, as I have run into these gaps, I’ve yearned to turn my frustration and anger into action. Often, I wish I’d gone to law school so I could easily navigate the judicial system. Instead, I’ve Googled for disability civil rights attorneys in my area so I could do something, take action.

A recent situation pushed me to a breaking point.

I’d had several issues with bigger organizations — a major airline and a sports venue. I found a firm near me that had a lawyer who had a disability himself. He is in the position of handling disability cases for the firm, so I thought this might be a great place to connect.

I could write several columns on the issues I had trying to make this happen. I’ll summarize by saying this lawyer was very poor at following through. I realize people are busy, but if that’s the case, it should be communicated. One must give potential clients a realistic sense of timelines and interest, and clients need to know the true merits of a case.

I parted ways with this lawyer and even filed a complaint with my state’s disciplinary commission. But they shrugged their shoulders. Nothing happened. Problems like these frustrate but we can’t close ADA’s gaps without encountering them. Individuals with disabilities must take a risk and fight back, when appropriate.

I know it’s not easy. It sure wasn’t easy for me to make these calls. It’s frustrating to do so and get shut down. However, I know myself: I will not give up. I will continue looking for our needed legal help. I’ll consider seeking help from nonprofit organizations that do this type of work and perhaps also file complaints with the Department of Justice.

To the legal profession, I put out a call: Let’s find and choose leaders in every community who will work on these issues. We need great lawyers willing to fight these battles. Many times, accessibility abusers have power and money. That makes this work difficult.

I’d also love to hear from all readers of this column. If you’ve had experiences battling these sorts of issues, let me know. I’d like to learn about successes. I also want to know more about where someone slammed the door in your face.

After over 30 years of ADA activity, why do we continue to see accessibility gaps? Why are offenders unwilling to provide accommodations? It’s the inaccessible accessibility I’ve written about.

Let’s continue to unite. The muscular dystrophy community is strong and we need to keep advocating for our rights. It is our right to access all the world has to give.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.