I promised you that Sammy would be back. He came to this column on April 18 (see: “True Accessibility for All: No Roadblocks, Please“), and because he is my alter ego, I figured we’d be talking again at some point.
The last time Sammy caught up with me, I was at my favorite coffee shop having an espresso cortado. This is where I do most of my writing because I love to be alone in a noisy room; it helps me to focus. That conversation with Sammy turned out well because we were able to come to a consensus about the feasibility of wheelchair travel in airplanes.
This time, Sammy caught me at my favorite beer establishment. I decided I needed to take a break from working. This place in my hometown does a small, 4-ounce beer pour. It lets me relax and socialize and not think about work.
I was enjoying a stout with a cool taste of coffee and chocolate when I looked up and saw Sammy. He was at the back of the establishment holding his head. I rolled my eyes, grabbed my cane, and sauntered back to him.
“Sammy, what’s going on, what are you doing back here? And why are you holding your head? Do you want me to get you a small beer to try?”
“No, no, ugh. I came in because I had too much coffee. Also, I’ve been watching this TV series called “1969,” and I can’t believe how much turmoil there was in the ’60s. It was so hard to effect change in this country.” Sammy was looking pensive now and said, “But it was all worth it. Things like civil rights, gay rights, women’s rights — it all led to positive changes in America.”
Knowing Sammy, I knew more was coming. There was a long pause, and my counselor training told me to stay quiet. Eventually, Sammy said, “We need to kick this up a notch. I know the history of disability rights in America is long, and I know some memorable protests have occurred. But I also know people continue to struggle with accessing buildings and public places. Come on, man, I’ve heard you say this! How many times have you been rejected when offering your expertise on improving accessibility in public venues?”
“Wait, Sammy, are you saying we should protest and riot?”
“Yes, why not?”
“Well, we have ways to get things done. We have processes to influence legislation, to even propose legislation. And we can meet with elected officials and talk about federal departments like NIH, FDA, and Social Security.”
I could tell Sammy was skeptical. “Yes, but our noise gets lost in all the static. There are too many things going on, and disability rights isn’t a priority for many. Look at some of the sit-ins that occurred recently. They were peaceful, and yet the police still carried many individuals away.” This is where Sammy became angry. “It’s like they thought these people could be carted off because they’re disabled!”
“Sammy, take it easy, it’s a step at a time. We would love your help. But keep in mind, as we build this we need to have our people out there. We need people who can help in a variety of ways. There will be meetings with elected officials in their home offices and in Washington, D.C. We also need volunteers who can make calls, write letters, and do social media. We can make this happen, and we are already talking about having D.C. lobby days in the future.”
Sammy was still unsure. “I understand what you’re saying, man, but all that takes time. How long do we have to fight for basic rights for a group of people? Look, why can’t we do both? We can do everything you say: build up the grassroots, develop the leaders, get our messages down on paper. All of that is great, I agree. But while we’re doing this, let’s hire a few strong dudes and dudettes and some cool vets with disabilities, and let’s storm the Capitol!”
“OK, Sammy, you’re getting a little extreme. I think that TV show about the ’60s did impact you. But you are right in one way. It’s become inexcusable not to have constant improvement in accessibility and services. We have many important issues ahead. We are dealing with wheelchair accessibility, improved services, better prices for drugs, more money for research and clinical trials, and expediency by the FDA on so many issues.”
Sammy’s eyes lit up, “I get it. Let’s take it a step at a time. Let’s build our advocacy team. We need advocates!”
I love that Sammy.
As always, I am on Twitter (@ralphyaniz) and would love to hear from you.
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.
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