Why lending a hand to a person with FSHD should make the news

A good Samaritan's assistance should be more recognized by our society

by Robin Stemple | September 27, 2023

Getting surprise help when you have facioscapulohumeral muscular dystrophy (FSHD) isn’t considered newsworthy. But maybe it should be.

These days, it seems that most, if not all, of the news on television and social media is bad. These negatives aren’t limited to reports on wars, hurricanes, inflation, pandemics, and the like. We also get a constant barrage of opinions, individual actions, and social media posts that can be viewed as derogatory — all presented to us as news.

One of the services provided by the agency I used to direct was a radio reading service, which was broadcast over the secondary audio programming (SAP) of a local television station. It featured recordings of volunteers reading the local newspapers aloud, which were offered along with the main signal of the television station’s broadcast. Visually impaired people could listen to the local newspapers by selecting their television’s SAP setting.

In this context, I became good friends with a staff member at the station. He and I would have regular conversations about news content, in which I contended that the station should offer more good news. A typical broadcast would run 29 minutes of death and destruction, followed by a “feel-good” story at the tail end. His view? “Bad news sells!”

Fighting the urge to lie down and stay down in life with FSHD

Perhaps he was right. That was years ago, and I haven’t seen a lot of changes; most of the news is still negative. It can give us the impression that the world is falling apart, that there are no good people left and we should all be afraid.

I couldn’t disagree more. I think that people are the same as they’ve always been: Most are good folks just living their lives, keeping to themselves and taking care of their families. For the most part, they’re happy to help when they see someone needs a hand. These folks just don’t make the news.

I’d like to share a recent experience to demonstrate my point. When I moved to Pittsburgh, I joined a group called BOLD, which stands for blind outdoor leisure development. BOLD organized a group outing to attend a Pittsburgh Pirates game, which my wife and I took part in this past week. I’d like to give a shoutout to the Pirates. The tickets were free and included $10 to spend on food. We hit “Dollar Hot Dog” day, so the $10 covered a nice lunch.

Now, some of you might consider what follows to be an example of ableism. I don’t, but that’s a subject for another column.

Needing help and getting it

Turns out we didn’t book a parking spot soon enough and ended up in a garage about a mile away from PNC Park, where the Pirates play. In fact, it was across the Allegheny River from the game. We went early so my wife, Wendy, wouldn’t need to rush as she pushed me across the river, as my FSHD has reached a point where I can walk only household distances. At the moment, I haven’t found a power chair I can use. I’ll be first in line when they start producing self-driving wheelchairs!

Wendy thus had to help me. As she’s a cancer survivor who’s still dealing with a leaking heart valve, an unfortunate outcome of her treatment, she needed to take a couple breaks. Still, we made it to the ballpark in plenty of time and enjoyed watching the Pirates defeat the Washington Nationals. Then it was time to head back to the van.

While the streets along the river are pretty flat, the bridge we had to cross has quite an arch. Wendy made it about a third of the way up before stopping to catch her breath.

At that point, a young man behind us asked if he could help. Wendy gave him the OK. He pushed me up the slope and kept on pushing until we were about a block from our parking garage. Since he was going a different way at that point, Wendy told him she’d be fine pushing me the rest of the way. I know he would’ve gladly gone out of his way and taken me to the garage if she’d asked.

We were extremely grateful for the help. In fact, it was one of the highlights of the day and made our Pirate experience more enjoyable.

The Pirates victory made the news, as it should’ve. (Pirate fans could use some good news this season.) This young man’s kindness, however, wouldn’t be considered newsworthy, but maybe it should be. I think we’d all feel better if there were more “feel-good” stories in the news and social media posts.

Let’s give it a try. All we have to lose is our negativity.

Note: Muscular Dystrophy News Today 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, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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About the Author

Robin Stemple Rob Stemple is a lifelong advocate for people with disabilities. He was diagnosed with FSHD in 1971 at age 14. Rob struggled with its’ affects for over 50 years. He lost his eyesight in a devastating crash with a drunk driver. Rob has been a special education teacher, director of a nonprofit organization serving the blind and a newspaper columnist. He lives in Pittsburgh with his wife, Wendy, where they both enjoy hanging out with their kids and grandkids. Rob is a musician, composer, and recording artist. His theory of life is, “Do the best you can with what you’ve got to work with!”