The other night my wife and I were watching the local evening news when a story about a man with a recent spinal cord injury came on. It was the typical pathetic-yet-“inspirational” cripple story. The purpose? To raise money for yet another “special” poor soul, the kind of footage that makes nondisabled media consumers feel fortunate, free from messy complications — maybe even blessed by divine favoritism — and motivated to either send money or change the channel. My wife and I rolled our eyes.
The man in the news story was a para — most likely mid-to-lower thoracic SCI — but seemed more like a quad. Why? He had been discharged from rehab after seven weeks — a wee babe on wheels. His wife had quit her job to be his “full-time caregiver”; they had to abandon their home because they were stymied by a two-step entry and narrow doorways; he needed help with bathing, transferring and putting on his socks and shoes; and he dreamed of one day learning how to drive with hand controls.
I thought back to 1965 and remembered that before I left rehab I had learned how to transfer into and out of a tub, transfer in and out of a car and load my chair, put on my clothes, transfer down to the floor and back up into my chair, and more. On the day of discharge, I drove with hand controls for the first time. But the main difference was that I was discharged after 18 weeks, not seven.
Yes, we’ve made progress — in kicking people out of rehab before they’re ready. More like being ripped from the womb and thrown naked and screaming into an inhospitable world. But expectations have changed. In post-ADA America, newly discharged people with SCI have been conditioned to think they must have an accessible home with a roll-in shower and a lowered minivan to survive. In pre-ADA days, we built plywood ramps to get into our homes, tore off the bathroom doors and hung curtains, and put hand controls on the clunker we owned. Quads would find used vans and make do.
It’s great that we have the ADA, but I fear that today’s crop of SCI survivors are in danger of losing that aggressive, “necessity is the mother of invention” attitude that has taught so many of us oldtimers how to navigate, circumnavigate and plow our way through whatever obstacles block our paths.
In my 48th year as a para, I have yet to live in an ADA-compliant home. I’m now living in residence number 16, which is equipped with a plywood ramp, a tub with a shower bench, a homemade electric winch-driven “elevator,” no roll-under sinks, and two hand-controlled vehicles with a combined age of 49 years.
But one thing remains the same. Whether we graduated from rehab in 1965 or were tossed out in 2013, chances are we still landed in an inaccessible home. If anything, the number of inaccessible homes in the United States has doubled in the past 50 years.
Is this progress?