Updated: Jul 5, 2019
I'm a firm believer that most people are good people. I believed that before my wife's diagnosis and I believe it even more now. Whenever we're out together, and I'm pushing my wife in her wheelchair, it is rare that I have to open or close a door by myself. The seas part if a group of people see us heading in their direction and priority is handed over to us at every turn. However, there are occasions when the public will let us down a bit. This blog is about those minor awkward interactions that stem from people simply not knowing what to say.
The number of disabled people in the US is a huge number, but how often do you see someone with a disability in a public place? When is the last time you held the door open for someone in a wheelchair? It probably doesn't happen that frequently. So what do you say? The person in the wheelchair has thoughts, dreams, and opinions just like anyone else, but I find that the disability almost always takes center stage. The small talk or comment revolves around the disability. So with that in mind, here are a few things that you really shouldn't say to someone with a disability. I'm only listing 5 - I would love to hear more in our forum or in the comments below.
1. "God only gives us what we can handle." That statement is normally delivered by someone in perfect health who I have to immediately assume can't handle much of anything. I can promise you this - my wife wasn't looking for a challenge. She was very happy with her career and raising our two kids - that was plenty to handle. She would tell you that on many days she can't handle her MS at all, it very much handles her. It dictates what she can do, how late she can stay up, how well she can speak, and how well she can think. I'm also not sure what type of reaction that statement is supposed to inspire. Is it supposed to make my wife feel special? Should she be thankful to have this extra burden on her shoulders? One thing is certain - if God is indeed sitting down with a list to figure out who the best candidates are to "handle" a neurological disorder, he checked the wrong box.
2. "Everything happens for a reason." Ah yes, the divine intervention angle! Of course my wife was supposed to have her life derailed by MS. It's all part of some grand plan that will all work out in the end. People who utter this nonsense are obviously not familiar with MS. The end is rarely as good as the beginning. But I understand the sentiment - let's believe in something bigger. Let's believe in some cosmic force spinning a giant wheel and turning the pages of a book where the stories of our lives are already written. Let's be real - the only reason my wife has MS is because she picked the short straw. Her body chose to work against itself and now she's a statistic like everyone else with the disease. Do people get cancer for a reason? Sure, maybe they smoked too much. How about diabetes? Poor eating habits and lack of exercise among other things. Those are actual reasons why some terrible things happen. That makes sense. But when someone takes my wife's hand and tenderly tells her that her circumstance is part of some grand spiritual plan, I know it's meant to be comforting, but I just want to ask them one question: is there a Plan B?
3. "Have you tried _______?" That spot is empty because we've heard them all. Fill in whatever you like. How about Turmeric? You know, The Miracle Spice? Tried that - still waiting on that miracle. Biotin can apparently fix anything, unless of course you include Multiple Sclerosis. Stem-cell? I heard about this doctor in Russia and his patients are spring boarding out of their wheelchairs. Really? Great. All I need now is $80,000 and a Duolingo subscription so I can learn Russian.
I completely understand that people want to be helpful - I get it. But that article or link that looks interesting on the side-panel of your Facebook feed, or that sponsored article at the bottom of a news site, is ultimately noise. Please understand that my wife's neurologist and his assistant attend a number of medical conferences each year. They are versed on the latest approved treatments and methods. Obviously people mean well, but medical recommendations put the person with a disability in an awkward position when they have to kindly decline the latest miracle drug or technique spotted on the internet.
4. "I wish I had one of those." A few years ago we were at Disney World. It was hot. We were surrounded by thousands of very sweaty and very exhausted people. My wife was in an electric scooter, since, you know, she can't walk. We arrived at the next magical attraction only to find a substantial wait time with many of those exhausted people already in line. But it was indoors and more importantly air-conditioned, so we decided to wait. My wife scooted into position and not a minute went by before a clueless gentleman turned towards us and said, "Boy, are you lucky! I wish I had one of those." And he laughed to himself. Regrettably, I smiled and nodded as if to agree with him. My wife did the same. Looking back, this reply may have been more appropriate: 'Sir, my wife has multiple sclerosis. The last word she would use to describe herself is 'lucky'. She can't walk. Sometimes she can barely stand. She's lost her career, can no longer drive, and lives every day wondering when - not if - her condition will get worse. I would embrace your exhaustion and celebrate the fact that you have two legs that work exactly as they should." If I ever hear a comment like "I wish I had one those" in reference to my wife's wheelchair or electric scooter I won't make that mistake again.
5. "At least you get those great parking spots!" A few thoughts on this comment: 1. There are rarely enough accessible parking spots wherever we go. I have mentioned Target in another post and how they offer a generous amount of accessible parking and I thank them for that. However, they are the exception. In most cases I have no confidence I'll be able to find one and I'm usually right. 2. I know that people say this with a smile and it's usually done in jest, but walking a few less feet out of the grocery store doesn't quite satisfy the daily struggle that most people with disabilities experience. 3. Let's not forget about the massive amount of frustration and anger when encountering a person without a disability parked in an accessible spot waiting for someone else. That is legitimately difficult to deal with and something that I never noticed before my wife became disabled.
Those are my Top 5. What are yours? Let me know in our comments or in our forum.