In this week’s episode, I expressed my concerns that some disability advocates go too far when labeling something ableism. They imply that anything negative about disability is ableist.

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Hello, this is Chris Young, and welcome to episode #3 of Contemplating Life.

Obviously, this being only the third episode, I’m brand-new to this podcasting business. My concept for this podcast is a bit open-ended but I’m starting to see a theme emerge. In the first episode, after I introduced myself, I talked about the negative and condescending aspects of being told that you are “inspiring” because of your disability even when you haven’t done anything extraordinary. Then I turned things around and talked about my belief that sometimes that’s okay. Who am I to say what can and cannot be inspiring?

Today we continue the pattern. Last week we talked about the evils of ableism. But in this installment, I’m going to take a bit of an opposing and possibly controversial view that everything that gets labeled ableism isn’t necessarily ableism. So my pattern seems to be that I present the party line and then talk about the areas where I disagree with that stance.

I’m going to go off on a bit of an angry rant this time but I want to state upfront that I’m normally not an angry or bitter person. It’s just that I think people are implying that any negative statement about disability makes you ablest and that just isn’t true.

I think it goes back to that old adage, “When you are a hammer, everything looks like a nail.” We also see this kind of thing in other kinds of -isms. Not everyone who criticizes a black person is a racist. Not everyone who criticizes a woman is sexist. Not everyone who criticizes Israel is anti-Semitic.

In their genuinely appropriate crusade to stamp out the horrors of ableism, I am concerned that some disability advocates go so far as to suggest that there is absolutely nothing wrong with having a disability. I suppose this boils down to nitpicking over the meaning of the word “wrong”. Obviously, I agree that disabled people deserve the same rights and opportunities as able people enjoy. I also believe that when possible, whatever reasonable accommodations are necessary to empower people to achieve their potential should be taken.

By the way, when I talk about reasonable accommodations, I’m not one of those disabled people who think the world owes them something because they have a disability. On the contrary, I recognize that it takes more than my fair share of the world’s resources just to keep me alive, functioning, and able to contribute to the common good. That recognition manifests itself to motivate me to be as productive as I can be. I strongly believe in the idea of “Pay it Forward”.

There are those out there who would say that I’m suffering from internalized ableism or what I call self-ableism. They would claim that I had bought into the narrative that somehow I am an inferior person and feel the need to justify my continued existence.

I wholeheartedly agree that disability doesn’t make us worthless, helpless, hopeless, or undeserving of the things that able people routinely enjoy. But let’s get real people! Having a disability is not easy. It is an extraordinary, difficult, and often physically and emotionally painful set of circumstances that has the potential to break your will and drive you into depressed self-pity and deep bitterness and anger. It takes massive amounts of self-esteem, external support, and occasional good luck to survive a severe disability. Religious beliefs can also be a useful asset in this ongoing struggle.

When I hear disability advocates say something to the effect that disability is no big deal, it’s just a different way of being, all we need is our rights recognized, reasonable accommodations to allow us to be productive, and an improved attitude on the part of the general public, I want to cry bullshit. This is no fucking fun and I’m offended by their attitude that it’s no big deal.

This is coming from me, a person who has by many accounts a very positive attitude about my situation. I’m a person who is not typically bitter, angry, or routinely depressed by my circumstance. I just think it’s a massive amount of denial to claim there’s nothing “wrong” with this situation. Again depending upon your definition of “wrong”.

In my as-yet-unsuccessful quest to become a published science fiction author, I wrote a story about a guy who was on his deathbed. He had the same disability as I have. As he was lying there, his life slipping away, he heard a disembodied voice that offered him the opportunity to live his life over again without his disability. His consciousness would be transported back in time to the day of his birth and be implanted in a non-disabled version of himself. He was essentially given the opportunity to reboot his life to live it over again and see what it would’ve been like to not have his disability.

I hesitated to submit it for publication for fear of the backlash it might receive from the disability community. Many would criticize it for saying that it perpetuated ableist myths that a life with a disability was an undesirable situation.

By the way, I did submit it to several print and online science fiction/fantasy markets. I got a nice stack of rejection emails but I don’t think it had to do anything with the theme of the story. For whatever reason, they just weren’t interested nor were they interested in the nine other stories I’ve written and had routinely rejected. That’s a topic for a different day.
Put this attitude of, “it’s no big deal”, introspective and compare it to other major life challenges.

Would you say to a person who was trapped in poverty that they should accept their condition which was simply the hand of cards that life had dealt them? Would you say to a person in an underdeveloped country that the violence of perpetual war, food insecurity, and insurmountable poverty should be accepted as no big deal? What kind of abject insensitivity is that?
Let’s fantasize for a moment about living in an ideal world.

I can share in the dream of Rev. Dr. Martin Luther King Jr. in which people are judged by the content of their character and not the color of their skin. It is possible to build a society in which racial prejudice does not exist. That dream of true human equality is achievable. I can imagine that faced with life-threatening police violence and rampant hatred and racial prejudice some black people wake up in the morning and wish they weren’t black. However, the only negative aspect of being a particular race is the way in which that race is mistreated for arbitrary reasons. People of color ought not to ever see their race as anything negative. The disadvantages they face are societal. Although it would be difficult, we can change society to eliminate racism.

I can envision a society in which men and women are treated equally. While there are biological differences between the sexes, these differences in no way justify the mistreatment of one sex by the other. Neither men nor women should see their gender as a negative. The only reason it can be negative is because of the societal insistence that men or women be limited in their capabilities or opportunities and forced into particular roles. Those who find themselves identifying with neither of the traditional definitions of male nor female illustrate the inequity of pigeonholing people into arbitrary categories of gender. While one can celebrate their masculinity, femininity, and non-binary-ness (is that a word?), we can better recognize the human dignity of individuals when we do not impose our prejudices based on sex, gender, and sexual orientation. The disadvantages that people experience because of gender issues are completely societal and in an ideal society could be eliminated.

I also envision a world in which people with disabilities are not held back by the limited expectations imposed upon them. We can design a world in which physical barriers do not hinder the mobility of people with physical disabilities. We can have audible signs and warnings as well as ubiquitous braille labels and other accommodations for blind and visually impaired people. We could teach American Sign Language in elementary school so that large portions of the population could communicate with deaf and hearing-impaired people. Stigma could be removed from mental health needs and attitudes towards other less visible disabilities could be improved. We can create a society that respects the rights of disabled people and gives them opportunities to be productive members of society.

Even if I lived in such an idealized world where I didn’t have to worry about getting accessible accommodations… Even if I could count on continued attendant care in my own home and avoid institutionalization in a skilled nursing facility… Even if I could find employment that would not jeopardize my benefits… Even if I could marry someone and not have their income or my marital status risk my benefits… Even if all the negative things fixable about living with a disability were to be fixed… The day-to-day struggles of living with a disability would still be a pain in the ass.

My late friend Rick Ruiz who worked with me for three years as my home health aide would get me up in my wheelchair each morning and ask, “Are you comfortable?”

On one particularly bad day, I couldn’t help myself but give him a brutally honest answer. I said, “Rick… I have two dislocated hips and they’ve been that way for decades. The balls of my hip joints have painfully rubbed against my pelvis for so long that they have ground away the pelvic bone and cut themselves new sockets. I have such severe scoliosis that there are two 90° bends in my spine. I’m tightly strapped into a back brace which is essentially a plastic body cast without which I cannot fill my lungs to breathe. Early in the day, it digs into my thighs. By late in the day, it slips upward and digs into my armpits. I have no use of my arms or legs. I can barely drive my power wheelchair. [Had I been giving this speech today and not years ago, I would’ve added that I have a trach, G-tube, and suprapubic catheter.] Given all of this, the answer is no. I am in no way comfortable. But… I’m okay.” I asked him to change his daily question from, “Are you comfortable?” to “Are you okay?” When he would ask me, “Are you okay?” I would happily answer yes every day.

That’s a good summary of how I see my life. Living with a severe and increasingly worse disability over 67 years is in no way comfortable. I don’t seek sympathy or pity. Despite this rant, I’m not at all bitter or angry. But I’m okay. And being okay has allowed me to lead a reasonably happy and productive life.

Those who say that having a disability is not a negative thing either have not had a very severe disability or are living under a delusion.

As comedian Dennis Miller used to say as he ended his rant and signed off his HBO series each week, “Hey… that’s just my opinion… I could be wrong.”

In next week’s episode of “Contemplating Life,” we will take a deep dive into discussing how the words we use to describe disability shape our perception of disabled people.

As always, I welcome your comments.

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I will see you next week as we continue contemplating life. Until then, fly safe.

Okay, PS… You may be wondering why I sign off with the words “fly safe” each week. I first heard the phrase used as a sign-off message by YouTuber Scott Manley. He is an expert on the aerospace industry and posts frequent videos about what’s going on in spaceflight news. I highly recommend his channel. He signs off that way each week. He has also mentioned that for a time, he was a frequent player of the outer space MMO “Eve Online”. When I started playing the game, I learned that that was the way many people sign off when leaving the game. I really like the phrase even outside the game. To encourage someone to “fly” to me means, “to reach for your highest potential.” But to say, “fly safe”, means be your best but be careful. Sure it’s bad grammar. It should be “fly safely” but that’s not the way they do it in the game. So, until next week, fly safe. Nor is it