*this article was published in the Providence Journal on Sunday, April 23, 2017. I wrote it shortly after reading an article by the Journal’s Mark Patinkin. Anybody who has spent more than a few minutes with a disabled person will understand. Unfortunately most people do not spend more than a few minutes with disabled people unless they have to.
When a report about a person who is exposed as a disability fraud makes the news it is never long before a follow-up story appears. There are those who suffer unimaginable loss yet manage to thrive. Those persons are truly heroic, and an inspiration to most of us beaten down by the seemingly endless stream of people who beat the system, gave up and exist on disability. The general public, most of whom have aches and pains of their own are inspired by the guy in a wheelchair who teaches high school rather than staying in bed, or the marathon runner who does so with artificial legs. Their belief that most people who are disabled are frauds is bolstered by what they see, and read.
For the truly disabled, however, those stories can be more painful than the disease or accident that relentlessly tries to take the joy of living away from them. Most of us see the story about a person in a wheelchair working, and marvel at that person’s strength. We rate the rest of the disabled on that scale; if they can do it, anybody can! We love a feel good story. It’s got to drive the people struggling to put on their socks nuts. Some people give everything they have and can barely get out of bed. For them, simply getting through the day is the best they can expect.
You don’t have to be heroic to be a hero.
While working as a firefighter and EMT in Providence I saw lots of disability. The people that I helped who are missing limbs or have lost mobility face an epic struggle every day. They can be cranky, angry and not just a little bit resentful, but put their best foot forward and get on with their lives. It is a difficult existence, and completely misunderstood by the rest of us who like nothing more than a feel good story about the person who “can” so we can tell our disabled fellows who “can’t,” or as we see it, “won’t” all about the heroic person we saw on the news. Most people respond to the challenges we are dealt to the best of their ability. Some appear to have given up, but in reality are putting in every ounce of effort they can muster, and work harder at living than most of us can imagine. By failing to acknowledge the effort that a disabled person needs to put forth every moment of every day just to be part of society we steal their self-respect and cripple them with feelings of inadequacy.
Everybody is different. Just because one person is able to beat nearly impossible odds and tap into a well of inspiration that makes it possible for them to do extraordinary things does not mean that every person who is disabled has the same opportunity. Maybe their pain is worse, or their disease has progressed to the point that makes it impossible to rise to the occasion. Perhaps their spirit is crushed, and the knowledge that they will truly never be seen as the worthy, fearless people they are is just too much to bear.
People without disability in their lives simply cannot understand how difficult it is to wake up every morning knowing that things are unlikely to improve. As weeks, months and years progress the optimism that we take for granted is relentlessly attacked. Showing a brave face to the world takes every ounce of effort disabled person has. Maintaining it takes the rest. Eventually the world grows tired of the struggle, turns the other way, and focuses on the latest story about the little engine who could.
That being said, the people who manage to keep dancing after losing a leg, or go back to their unit after having their arms and face blown off are absolutely deserving of our respect and admiration. But so are the ones that we never hear about; the people who live along side of us, but are unable to contribute the way we think they could.