miraculous-medical-miracle
“Have you seen this yet?”

I receive a post starting out this way on my Facebook timeline at least once a week. It’s always accompanied by either news about some miraculous multiple sclerosis study, or more frequently, some super-cool high-tech Iron Man-looking electronic contraption that is supposedly going to revolutionize my life as a person who can’t walk. The short videos showing paraplegics standing and wounded veterans walking look pretty amazing, but I have just one thing to say to my well-meaning friends: STOP.

Technology is a wonderful thing, and there is no question that I wouldn’t have the freedom of movement I enjoy today without my power wheelchair, electric scooter, or accessible SUV. The tools available now to quadriplegics to help them drive and individuals who have cerebral palsy to help them communicate are pretty amazing. But I want to explain why sending someone like me a video of a person riding in a wheelchair with Caterpillar treads, rolling into a modified motorcycle, or using an off-road chair that goes over rocks and tree branches isn’t likely to induce much enthusiasm.

It seems obvious that people who are nondisabled view the world differently than those of us who use mobility aids. What isn’t obvious to the nondisabled, however, are the practicalities (or lack thereof) associated with some new high-tech devices designed to either help us get around more easily, or encourage us to have more fun. Because nondisabled people don’t use mobility aids, they don’t think about things like their size, weight, maneuverability, ease of use, or transport. They just look at a few seconds of video and think, Hey, I bet Jane would get a real kick out of this! without thinking that Jane has no practical use for it, or the thousands of dollars needed to pay for it.

Here’s a good example. A few years ago, a company debuted a device designed to take a paraplegic from a sitting position to a strapped-in standing position, from which he or she can roll around and do things. The video shows a thin man having conversations with friends, shopping at the grocery store, and even exercising with the device. Most nondisabled people would look at this device and think it was a miracle; after all, it would help paraplegics stand up! They could reach high shelves and have eye-level conversations at parties!

Unfortunately, reality brings this miracle to a crashing halt for those of us who would actually use something like it. First, it’s only designed for indoor use, and due to its extremely low ground clearance, even getting it into a grocery store from the parking lot could pose a problem. Second, it weighs 245 pounds, and if someone plans to use it outside the home, it needs space to be transported in addition to the user’s regular mobility aid. Because of the way the user is strapped in, bending over to pick something up off the floor is difficult, if not impossible. There is also an implied user weight and size limit because of the counterbalance mechanism and its small width. Then there’s the $15,000 price tag, and the fact it’s not covered by insurance.

These are usually the same issues that pop up with other high-tech devices. Another company created two all-terrain power wheelchairs and launched them with pretty inspiring videos showing users exploring the woods, the beach, inclines, and even 3-inch steps. What the website doesn’t tell you is that this wheelchair is not considered a medical device and is not FDA approved, neither model is generally covered by insurance, and they’ll both set you back $14,000. As for the custom-modified wheelchairs with triangular treads or tractor tires that will get me through mud or snow, just let me know who can make one of these for me, and how I can squeeze it into my car to take it anywhere.

Some of these new devices are cool to see in action, but before you share yet another video of something you think is going to revolutionize my life, please take a moment to find out how my everyday life actually works. If the contraption in your fun little video link isn’t FDA-approved, isn’t sold in the U.S., doesn’t fit through a doorway, can’t be transported easily, or isn’t covered by insurance, chances are it’s useless to many people like me. Sometimes your posts make me feel worse since I can’t use these devices to do all those cool things (see reasons mentioned above).

So the next time you see one of these videos, before you click “post” or “share,” take the time to think about why you’re sharing it. Is it because I’m your only friend in a wheelchair and thus I’ll probably think it’s cool? Or have you taken the time to get to know my real needs and limitations, and truly believe this device can help me? If you’re too busy to consider the implications, then please stick to sharing the cat memes. At least those are always useful for a good laugh.

Sylvia Curbelo Longmire is a service-disabled veteran, mother, author, consultant, entrepreneur, world traveler, and Ms. Wheelchair USA 2016. Diagnosed with multiple sclerosis in 2005, Sylvia learned how to travel with a walker, and eventually with an electric scooter. Follow her travels at www.SpintheGlobe.net.