My disabled body and me

I think that the lives of people with disabilities are still not valued as much as they should be. Here in the United States, news of the daily COVID death toll routinely prompts people on social media and even political leaders to say, “But how many of those people were old or had other health conditions?” The implication is that those deaths are more acceptable than others.

People who are more likely to die if they get COVID-19 include those with spinal cord injuries, Down Syndrome, and other disabilities. This means those comments not only express ageism, but also ableism: a belief that disabled lives are inferior to non-disabled lives. Evidence of disregard for disabled lives can also be seen in the recent flooding in Germany, where 12 people with disabilities drowned in their assisted living facility because they were not evacuated — a grim scenario that has played out in previous natural disasters all over the world. 

I recognize ableist attitudes, because I used to harbor them myself. I became disabled at age 22. A near-fatal bout with bacterial meningitis forced doctors to amputate parts of both my feet and hands. That saved my life, but left me with reduced mobility and dexterity. In the hospital, I spent many nights distraught about my new life as an amputee. In my darkest moments, I wondered whether it would have been better if I had died.

“Where did my fears about whether a disabled life would be worth living come from?“

Looking back on that 17 years later, it seems absurd. Since the amputations I have written two books, married a wonderful woman, traveled through Europe and South America and befriended new and interesting people. My rehabilitation was not easy, and certainly there are things I wish I could still do (like play basketball or walk barefoot on the beach). But my life is very good, disabilities and all. It is different, but it is not worse. 

Where did my fears about whether a disabled life would be worth living come from? I believe that I absorbed them through years of ableist comments and imagery, in the media and in my daily life. Years of being taught, usually subconsciously, that being able-bodied was “normal,” and having a disability was less than normal.

“Since the amputations I have written two books, married a wonderful woman and traveled through Europe and South America”

Shortly after my hospitalization I was flipping through radio stations when I stumbled upon a talk show host chiding his co-host for dating an amputee. Anyone who is missing a limb, the host said, should consider anyone who is not missing a limb “out of their league“. Intellectually, I knew it was a bad joke made for shock value. But, emotionally, it obviously affected me deeply, because I can still remember exactly where I was when I heard it.

We should work to change these attitudes, both in ourselves and our children. We must strive to see disability not as abnormality, but as a very normal part of the human condition. The work of normalizing disability has begun.

We have closed most of the often-squalid institutions where people with disabilities were warehoused, in favor of “mainstreaming” them in schools, workplaces and other public squares. We have passed laws to prevent discrimination based on disability. But the devaluing of disabled lives that we have seen throughout the COVID-19 pandemic shows that we still have a long way to go.  

Aus dem Englischen von Carmen Eller