Disabled people like me have always been vulnerable to disease

Disabled people like me have always been vulnerable to disease

I keep hearing about how disabled people are panicked over covid-19. As a disabled person, I know this is true…

The fear and outrage are real. I was born with spinal muscular atrophy (SMA), a neuromuscular weakness, and have never stood or walked. My respiratory muscles are so weak that the slightest cold could kill me. So my risk from this dread disease is enormous. What’s more, I don’t want my right to a ventilator to be rationed away to someone younger and healthier, and deemed more deserving…

We are scared. We know we can’t entirely self-isolate. Because we rely on outside help, we’re always vulnerable to whatever germs our personal-care aides may, despite their best efforts, inadvertently bring into our homes. It’s a risk we have to take — always. We don’t have a choice…

The rationing of scarce medical resources — particularly the idea that ventilators could be given to young, otherwise healthy patients instead of people like me — has only mobilized us. Online petitions and even lawsuits have ensued to block such blatant and dangerous health-care discrimination. Tennessee has even singled out those with SMA — like me — for exclusion from critical care in an emergency triage. But I’m proud of my disabled brothers and sisters for being among the first to bring this to public attention and taking action…

But if I do get sick, I hope I can stay out of the hospital. That’s vital, because there has been alarming discussion that strained hospitals could end up taking breathing devices away from people who use them regularly so that others can have them. This would be ghastly and unfair. We need and use our devices every day…

Read more at the Washington Post…