“I would rather die than ________.”
Fill in the blank: not be able to walk, not be able to hear, not be able to see, not be able to _____.
We hear this stuff all of the time. Some of us say it. My father had recited something to this affect until it happened to him.
When my father became disabled after suffering a massive stroke in 2017, he did not want to die. He fought for his life until the very end, even when his heart defied his will to live.
As I look back at my father’s life, recalling the good times to comfort me in my pain; I’m troubled how our society’s views on disability tainted his final years.
The stroke effected my father’s left side. He could no longer walk because his brain would not communicate with his left leg or arm. My mother cared for him and he used a wheelchair. Despite continuous physical and occupational therapy both in home and at a clinic, the use of his left side was never fully restored.
The most difficult part of this for me was not that he lost the ability to walk, but the shame he felt because of it. My father said repeatedly he didn’t want to be remembered this way. He asked my mother to avoid taking his picture, even with his grandchildren. After he died, my mother told me he avoided sitting on their porch because he didn’t want people to see him in his wheelchair as they drove by. As much as my father loved his daily excursions, my parents didn’t get out much at all, only a handful of times in 2 years with the exception of therapy, doctor appointments and ER visits. He avoided things that brought him joy because he was ashamed.
Invalid. What a horrible way to view yourself. What a terrible, awful word. But that’s how he felt.
And who can blame him?
When our media does a story about disability, it’s either inspiration porn or stories of abuse. Society celebrates “overcoming” disability: Look at what an incredible speaker this man with Down syndrome is! Look at this woman with cerebral palsy who completed a marathon. Look at the teenager with autism crowned prom king! We put these celebrities of the disability world on a pedestal.
What about just living? Why can’t we celebrate life? All lives? Sure, we can applaud the many men and women who achieve a personal best racing in their wheelchair. But how about we accept and respect all the other people in wheelchairs overcoming everyday obstacles the able-bodied create, such as people parking in the spots designated for them? How about moving signs, scooters, and bikes off of sidewalks and ramps so folks can get by and live their life? How about not staring at someone just because they look or talk differently than you? How about getting to know your nonverbal neighbor instead of whispering behind his back and wondering “what’s wrong with him”?
We are all suffering from the social model of disability. The idea that what makes someone disabled is not their medical condition, but the attitudes and structures of society. This model broke my father’s spirit. This model is part of what devastates parents when they find out their child has a disability. If our world was set up in a way that was accessible, people with disabilities would not be excluded. This needs to happen in all facets of our lives, make curriculum at school accessible, not just the buildings and sidewalks around it. Make jobs accessible, not just the applications and interview process.
We also need to dump the hero complex. Let’s stop patting ourselves on the back for helping someone with a disability. Doing the right thing is not something to celebrate. You just do it. Besides, often that person with a disability probably didn’t need your help. Or perhaps they wouldn’t have needed your help if there had been a ramp or functioning elevator or straw in the first place.
The problem doesn’t lie solely on society. Much of it starts with our medical community. I was at the hospital after my father’s stroke. He had lost all use of the left side of his body. University Hospital in Cleveland is considered one of the best in the country. When the team of doctors came in to talk about recovery, they gave a timeline for walking again. They discussed rehabilitation and working hard. No one mentioned living a full life by learning to adapt to what could be permanent changes in his body. No one talked about using a wheelchair. No one talked about adapting his home, car, or perspective so he could live his golden years to their fullest.
The social worker mentioned rehab. The therapists all focused on walking again. Not one brochure on universal design. No discussions on modifying their home. That would have helped when my mom had their bathroom redone while my father was in residential rehab for 6 months. He was never able to use their remodeled stall because it was not accessible for someone who cannot walk independently. He loved taking hot showers and he was robbed of that joy the last two years of his life.
My mom talks a lot about how hope kept my dad going. Hope that he would walk again. Hope that he would drive again. Hope that he would be “normal” again. I can’t help but imagine how things would have been if we stopped looking at disability as some sort of curse. If our medical system made it easier for families to get what they need when a loved one becomes disabled: a comfortable wheelchair, consultations for modifications of your home and vehicle, counseling to understand disability, guidelines for finding an accessible home. My Dad could have spent his final years doing the things he loved without shame or embarrassment. Instead he had the extremes of being told he will walk again and being told he should be in a nursing home.
According to U.S. Census figures, nearly 1 out of 5 Americans have a disability. 1 in 4 twenty-somethings will experience a disability significant enough to put them out of work for a year or more. It’s not a matter of if disability will affect you or someone your life, it’s a matter of when. It’s time for us to start normalizing one of the most natural states of the human condition.
Ableism affects those with disabilities like blindness and deafness the most as it does those with autism. Sadly the “wheelchair” lobby has little interest or respect for those with other disabilites. Just go to your local mall or government buidling and you will see an elevator, wide door and ramps all because of accessibility lawsuits. Those in wheelchairs will engage a swift lawsuit if they do not believe these services are enough. What about a sign language interpreter or a menu or pamphlet in braille? Quite rare indeed. I have a rare disease called Neurofibromatosis and also I am person with autism .I see way more sympathy and publicity for those with Down’s syndrome than other genetic disorders and when I think about Down syndrome it is like those who use wheelchairs, over publizied to the detriment of people with other developmental disabilitiies. Those disabiled advocates need to be fair to all disabiliites and to lobby through legal channels for their disabled member’s wants and needs not just those with “Wheelchairs” and Down syndrome.
I agree with much of what you’ve said. That’s why organizations like the Center for Family Involvement are so important. We have staff and volunteers with diverse disability and cultural backgrounds. We have liaisons who are addressing issues affecting the deaf and blind communities. We staff who support families affected by autism, cerebral palsy, and much more rare conditions. We have cultural brokers, rural specialists, and urban savvy staff. We also have many people who help those dealing with medically fragile and complex loved ones.
This particular blog was written by me, referencing something very personal that I can address with authority. My father was using a wheelchair. My son has Down syndrome along with a number of other conditions. So of course I referred to my personal experience in sharing this perspective.
When it comes to advocacy, I agree with you, the disability community is far too siloed. We must work together advocating with each other. It can’t be just Down syndrome and wheelchairs.