In this episode, I discussed ableism which is defined as prejudice against or discrimination towards disabled people.

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Hello, I’m Chris Young welcome to episode #2 of the “Contemplating Life” podcast.

In this episode, we will continue our discussion of disability issues. We begin a two-part series on the topic of “Ableism”. In this episode, I will discuss what ableism is and give examples of why it is a significant problem. next week we will discuss how sometimes accusations of ableism in my opinion go too far.

Simply defined, ableism is discrimination against or prejudice towards disabled people. The word was coined around 1980 and is derived from other kinds of -ism such as racism or sexism.

One of the clichéd phrases in describing any kind of prejudice is “a distinction without a difference.” The color of one’s skin is a distinction. You can categorize people according to that physical attribute. It is a distinguishing characteristic. But it is an insignificant difference. It is not an indication of one’s abilities or value as a human being. Racial prejudice takes the opposite view. Racism unjustifiably assumes that people of particular races are either superior or inferior to one another in qualitative ways.

Similarly, sexism unjustifiably assumes the superiority of males over females. While there are biological and physiological differences between men and women, when it comes to human rights, civil rights, equal work for equal pay, etc. one’s gender is again “a distinction without a difference.”

Ableism presents us with a more difficult issue. It is harder to make the argument “a distinction without a difference.” By its very nature, a disability is something that you are literally dis-able or unable to do. In my case, my neuromuscular disease SMA leaves me with severely weak muscles. I have very minimal use of my fingers. I cannot move my arms or legs. I cannot hold my head up or move my head around. These are objective, quantifiable, significant differences. My physical capabilities are less than the capabilities of the vast majority of the population.

The distinction without a difference argument comes when it comes to things like human rights, civil rights, and the perceived value of the human being in question. There is no difference in our basic needs, desires, or value as members of society.

All of these -isms seek to define groups of people as less valuable humans or even not human at all. Because these people are “not like me” they are not real people and therefore not deserving of the same rights and privileges that I enjoy.

I believe that ableism is more subtle and in some ways more difficult to recognize and combat than racism and sexism for a variety of reasons.

I believe the biggest issue is that ableism is not typically driven by hate nor does it normally lead to hatred. There are not able supremacist groups calling for the destruction of disabled people. Discrimination against disabled people is rarely malicious in the way that racism or sexism is.

That is normally it isn’t dangerous or malicious.

Don’t get me wrong… It can be extremely malicious. The prime examples are the ways that Nazi Germany treated disabled people and imposed forced sterilization on those it deemed inferior. The general eugenics movement is insidious in nature.

In the past couple of years, there have been instances where disabled people have received the same kinds of deadly mistreatment at the hands of police as racial minorities. Here are just a few instances.

Police shot and killed a shoplifting suspect who was wielding a knife as he fled them in his motorized wheelchair and tried to enter a store. They feared he was a threat to the shoppers in the store but one has to wonder if there was a way to subdue the man that didn’t include deadly force. I wondered why they didn’t try to shoot out his tires. Was he that much of a threat? Most power wheelchairs can’t exceed 5 mph. Most people could outrun a knife-wielding person in a power chair.

A black man who was a paraplegic was dragged out of his car during a traffic stop for allegedly failing to comply with an order to exit the vehicle. The body camera footage shows the man clearly explaining that he could not exit the vehicle because of his disability. All of his attempts to comply with other orders from the officers were ignored.

Deaf, autistic, and mentally ill people have often had deadly encounters with police for failing to comply with police orders.

In his book “Disability Pride”, journalist Ben Mattlin reports that during the Covid pandemic, several states had regulations that allowed medical professionals to remove ventilators from disabled patients and reallocate them to able Covid patients. While he doesn’t cite any specific examples of this actually occurring, it could have happened had disability advocates not immediately protested the policy and seen it was reversed.

This shocked me to no end. During the pandemic, I was briefly hospitalized for a urinary tract infection. I use a ventilator at night as a kind of glorified CPAP machine to help me sleep. You can’t use a CPAP with a trach so I have to use a ventilator instead. My concern was that they would not take me off the ventilator in the morning. I was worried they would presume I was a Covid patient and try to keep me ventilated. My inability to communicate while on the ventilator can be very terrifying. Although I am not totally dependent upon the ventilator, I had no idea that taking my ventilator with me to the hospital put me at risk of losing it and having it confiscated for Covid patients.

These may be extreme examples, but ordinary everyday prejudice against disabled people is much more subtle. Certainly, no one worries that disabled people are going to take away all the good jobs. We are typically not feared for our political power or wealth. If there is any genuine ill will towards disabled people is that they are a drain on society. Businesses sometimes complain that accommodations for disabled workers create a financial burden on them. However, even those who would not ever think of the disabled person as a burden or a drain can still engage in ableist activities and espouse ableist viewpoints. Conscientious, well-intentioned, empathetic people can be ableists. While there might be some forms of racism or sexism among such conscientious people, that’s not mainstream racism or sexism to the same extent that it applies to ableism.

This subtle, nonmalicious, well-intentioned ableism manifests itself in lowered expectations of what disabled people can do. I have heard of instances where people with Muscular Dystrophy were denied college assistance from their State Department of Vocational Rehabilitation because they believed the client’s life expectancy was too short. For reference, doctors didn’t think I would live to see my teenage years. I’m currently 67. Fortunately, the people at Indiana VocRehab didn’t have that concern with me and I received full tuition and was able to obtain a BS degree in computer sciences.

These lowered expectations often result in expressions of surprise when disabled people far exceed those expectations simply by doing ordinary things. This links back to the discussion we had last week about inspiration. It should not be inspiring that a disabled person can do ordinary things yet that sense of wonder and inspiration grows out of unrealistically diminished expectations of disabled people.

Part of ableism is the idea that the way to fix our problems is to cure us of our disability. This further reinforces the idea that there’s something inherently wrong with us. It denies the possibility that it’s okay to live with a disability. This desire of others to cure us is more prevalent when it comes to autism and mental health issues. Autistic people are rejecting the medical diagnosis of autism and have begun referring to themselves as neuro-atypical which implies different but not necessarily diseased. Regarding mental illness, who are we to judge what is or isn’t a healthy mind? Many people who struggle with mental health refuse treatment. They claim that the drugs used to treat their symptoms can dull their senses and suppress their personality and creativity. This is eloquently explored in the classic Pink Floyd song “Brain Damage” from their extraordinary hit album “Dark Side of the Moon”. Inspired by the mental collapse of their former bandmate Syd Barrett, the lyric goes, “You raise the blade. You make the change. You rearrange me till I’m sane. You lock the door and throw away the key. There’s someone in my head but it’s not me.”

The idea that you would not be the person you were if not for your mental illness very much extends to other disabilities as well. We are the sum of our physical selves and our experiences. We would not be who we are if not for our ability or disability or our experiences which are shaped by our ability or disability.

As strange as it may seem, I agree with the position of many disabled people that there are certain advantages to having a disability. No, I’m not talking about the fact that we get the good parking spaces. Living with a disability gives you insights, perspectives, and experiences that other people do not have.

Consider the case of renowned astrophysicist Stephen Hawking. The effects of ALS motor neuron disease (which is medically similar to my SMA) left him unable to move or speak. Traditionally, astrophysicists explore their concepts using lengthy mathematical equations and derivations on paper or a blackboard. That was beyond Hawking’s physical abilities. He had to work out such derivations in his head. To do so, he would often visualize the shapes created by the equations and think about them graphically rather than using mathematical symbols. This gave him insights into the equations that others had missed.

In future episodes of this podcast, I will recount ways the strategies I have used to cope with my disability have also worked when dealing with other life challenges. The proverb says that necessity is the mother of invention. Dealing with a disability involves many necessities requiring invention.

The idea that there are advantages to a disability that one might not want to lose is a topic that is very personal to me. Let me explain.

I believe it was sometime in the late 1980s that people from my Catholic parish’s healing ministry, led by my dear friend and pastor Fr. Paul Landwerlen, came to me and offered to hold a healing prayer service for my benefit. My immediate response was, “Why? There is nothing wrong with me.”

Let me state first that I often pray for myself and others for healing. While I believe in the value of prayer especially healing prayer, I didn’t really think any amount of prayer was going to get me up out of my wheelchair to walk. I politely refused their offer.

A few weeks later, I was discussing the situation with another beloved spiritual director, Sister Maria Beesing. I became friends with her by attending several of her weekend-long seminars on the Enneagram Personality Typology. Briefly, Enhimhimneagram is a system of self-examination of one’s strengths, weaknesses, and motives that allows you to see yourself and others in a different light and to become a more well-balanced individual.

I explained to her that like my personality type, my disability was an integral part of who I am. This is especially so because my disability is genetic. If you have, for example, a spinal cord injury caused by an accident, you can speculate what would you be like if you didn’t have this accident. If you catch a disease such as polio, measles, or HIV/AIDS you can ask what would it be like if you had not contracted this disease. But because my disability has a genetic cause, you cannot say what would Chris Young be like if he didn’t have Spinal Muscular Atrophy. It is part of my genetic makeup. It is what makes me uniquely me.

One of the things that she teaches in the study of the Enneagram is that we each have certain strengths (or from a theological perspective God-given gifts) and that associated with that giftedness there are also weaknesses that are directly tied to that giftedness. Essentially, we abuse or overuse our gifts under circumstances in which that particular ability or strategy for coping with the world is not necessarily the appropriate one. Under those circumstances, the gift becomes a compulsion that blinds us to broader ways of dealing with the world.

Enneagram theory postulates that there are nine different personality types. Through her writings and teachings, I have self-identified as type FIVE. She said to me, “You acknowledge, do you not, that there are positive and negative things about being a FIVE?”

I agreed yes.

“Furthermore, do you not pray that God relieves you of the burden of the negative aspects of your personality and give you the strength to overcome the negative aspects of your particular personality type?”

Again I agreed.

“Do you think that if God cures you of the negative aspects of your personality that somehow you will lose the God-given giftedness that is also an integral part of who you are? Do you think that similarly God would cure you of your disability yet rob you of the essence that is you and eliminate the giftedness you have received through spending a life with a disability? Cannot an all-powerful God relieve you of the burdens of the negative aspects of your disability without withdrawing the giftedness that lies within you?”

Holy shit. That is one wise spiritual woman. I had a lot to think about.

A few days later I recounted the story to Fr. Paul and agreed to attend a healing ministry service. At that service, I explained my initial reluctance to attend. I recounted my conversation with my very persuasive spiritual director Sr. Beesing. They laid hands upon me and prayed over me.

I didn’t get up and walk. I didn’t expect to. A radically religious person would say that was the reason.

There were, however, unexpected results. I was healed of things that I didn’t realize needed healing. Personal problems that I was struggling with became resolved. Broken relationships were mended and restored. Answers to spiritual questions that I had been seeking began to come into focus.

Fast forward to December 2016. While I was in the hospital recovering from pneumonia and getting accustomed to my trach and the use of a ventilator, the FDA approved the first treatment for Spinal Muscular Atrophy. The treatment would not reverse the effects of the disease. At best it would slow or halt its progression. It consisted of a series of monthly spinal injections to achieve a loading dose followed by another spinal injection every three months for life. Considering the severity of my scoliosis which would complicate the injections and might make them impossible as well as the minimal benefit I might achieve by the treatment, I declined to pursue it.

Two years ago, a new oral treatment was approved for SMA. You simply drink 6.5 mL of a liquid or take it through your G-tube as I do. This once-a-day treatment, like the injections, is extremely expensive yet Medicaid will cover it. I have been taking this oral treatment for two years. I am confident that it has slowed the progression of my disease.

Some people with SMA have declined to take treatment insisting that they are satisfied with their condition and don’t need to be cured. Had the treatment been available prior to my epiphany through the guidance of Sr. Beesing I probably still would have taken it. The prospect of stopping the progress of a progressive disease would still have been attractive to me. Yet given my earlier arguments about, “This is who I am and I wouldn’t be me without it.” I can understand why some people would refuse the treatment.

After the first treatment became available in 2016, I couldn’t help but reflect back upon my experience with the healing ministry. I don’t recall exactly what year it was that I participated in that ceremony. At the time, I didn’t know the name of my disease. Years later after finally getting a definitive diagnosis, I researched the history of the disease. I have not been able to definitively figure out when the term Spinal Muscular Atrophy was first coined. I do know that sometime in the 1980s, discoveries were made identifying the gene which causes SMA. There were significant discoveries in the mechanism of the disease. Scientists were able to breed a strain of mice that exhibited the disease thereby allowing the testing of a variety of treatments and other important studies about the mechanics of SMA. All of this led to the treatments we have available today. When did this progress begin? As best I can tell… Sometime in the 1980s.

I have neither the strength of faith nor the ego sufficient to believe that my attendance at a small healing prayer service sometime in the 1980s led to the research breakthroughs that allowed for treatment for this disease. Then again, my dear friend and spiritual advisor Sr. Maria Beesing would likely remind me I ought not to put limits on the power of God.

There are claims that disabled people often succumb to ableist thoughts or ideas. They have been indoctrinated to have lowered expectations of their own capabilities. They buy into the narrative that somehow they are incomplete people and undeserving or incapable of the kinds of rewards and benefits that able people routinely enjoy. I have seen this in action as well.

I could go on and on citing examples of overt, covert, deliberate, unintentional, malicious, or nonmalicious ableism. I want to talk about another aspect of ableism and that is what I believe is an unrealistic denial of the real disadvantages of having a disability.

I want to try to keep this podcast under 30 minutes so we are going to continue the discussion next week. Next week’s episode might be a little bit short but this one would have been way too long if I did it in one piece.

So, in next week’s episode of “Contemplating Life,” I will discuss the ways that I think accusations of ableism sometimes go too far.

As always, I welcome your comments.

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