Episode #3 “Ableism Accusations Overdone” (2nd in a 2-part series)

****Note: This episode contains explicit language. Listener discretion advised****

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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Transcript

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.

If you find this podcast educational, entertaining, enlightening, or even inspiring, consider sponsoring me on Patreon for just $5 per month. You will get early access to the podcast and any other benefits I might come up with down the road. It’s not that I’m desperate for money, but a little extra income sure could help.

Even if you cannot provide financial support. Please, please, please, post the links and share this podcast on social media so that I can grow my audience.

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

Episode #2 – “The Evils of Ableism” (first of two parts)

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

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Transcript

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.

If you find this podcast educational, entertaining, enlightening, or even inspiring, consider sponsoring me on Patreon for just $5 per month. You will get early access to the podcast and any other benefits I might come up with down the road. It’s not that I’m desperate for money, but a little extra income sure could help.

My deepest thanks to the people who have already signed up. You know who you are and you know how grateful I am.

Even if you cannot provide financial support. Please post the links and share this podcast on social media so that I can grow my audience.

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

“Introduction” and “Unintentionally Inspiring” – Episode #1

Here is episode #1. I introduce myself and tell you a little bit about what you can expect from the podcast. Then we spent some time talking about the topic of inspiration as it relates to disabled people.

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Transcript

Hello, my name is Chris Young, and welcome to episode #1 of my new podcast “Contemplating Life”.

The first questions you are probably asking are, “Who is Chris Young?”, “What is this podcast about?”, And “Why should I bother listening to this?” I will answer those first two questions in this episode. Ultimately you will have to do the math on that last question. I hope you will give me an opportunity to show you why this might be worth your time. I believe I have some interesting insights to share and stories to tell.

So who am I? I’m a 67-year-old, single, white, straight, cisgender male.

I live on the west side of Indianapolis in the house I grew up in with my sister Carol and my roommates Barb and Josh.

Whether or not you think I was a human being at the time, it was at the moment of my conception that it was determined I would have a genetic neuromuscular disease called Spinal Muscular Atrophy Type 2. That particular fact has affected absolutely everything for every moment of my life. Still, it does not completely define me. But I wouldn’t be who I am without that particular disability. The name of the disease is quite a mouthful so for our purposes, we will just call it SMA. It is similar to Muscular Dystrophy although for technical reasons it is not a type of Muscular Dystrophy. Like MD, it is genetic and it is a degenerative muscle disease. It is more closely related to ALS in that both diseases affect motor neurons.

I never walked when I was young. My parents carried me around until I was about five years old when they purchased my first wheelchair. When I was 10 years old, the special education school that I attended gave me the use of a power wheelchair that had been donated to the school.

I attended Indianapolis Public School #97 James E Roberts School which at the time was one of only 2 special education schools in the entire state of Indiana. I attended Roberts School from kindergarten all the way through high school. However, for the last three years of high school, I went to Roberts School for half of the day and to my neighborhood high school Northwest High School the other half of the day.

I then earned a bachelor of science degree in computer sciences from Indiana University – Purdue University at Indianapolis a.k.a. IUPUI.

I worked as a computer programmer at the Indiana University Department of Medical Genetics for two years until my disability worsened to the point I could no longer work a full-time job. I started my own one-man work-from-home computer consulting company Cyborg Software Systems Inc. however after about 10 years I folded that effort because I wasn’t making any money.

I’ve had some success as a technical writer. Also, I’ve written autobiographical articles for Indianapolis Monthly Magazine one of which was awarded Best Magazine Feature by the Indiana Chapter of the Society of Professional Journalists.

For many years I was active in my local Catholic parish serving on the finance committee, parish council, education committee, tournament director of a poker tournament at our annual parish festival, and other projects. For over 30 years, I taught Catholic inquiry classes in the RCIA program in my parish.

In future episodes, we will talk about all of these topics in more detail. I will talk about my experiences in special education, transitioning to regular education, growing up in the Catholic faith, leaving the Catholic Church in my late teens, returning to church in my late 20s, and other major events in my life.

You can expect some of these episodes will deal with religion. I want to make it clear that I’m not out to push my beliefs on anyone or attempt to evangelize or proselytize anyone. My goal in discussing religion will be to share the history of my journey of faith and perhaps to educate people about the Catholic Church. While the church is far from perfect, it suits me best of any I’ve found.

I would describe myself as an unapologetically progressive liberal Democrat although not radically so. I am highly tolerant of opposing political views by anyone who can express those opposing views rationally, competently, and without hypocrisy. I will not hesitate to criticize progressive politicians and advocates when I disagree with them. And you can count on me to point out and oppose any hypocrisy anywhere along the political spectrum.

Let’s talk about the title of the podcast. It turns out, it’s really difficult to come up with a catchy title for a podcast that has such a broad array of topics. A friend of mine, Fred Eder has a podcast called Fred’s Front Porch Podcast. He similarly deals with a wide variety of topics. He’s trying to create the kind of atmosphere where he’s sitting around on his front porch and you wander up to join him to talk about whatever suits you at the time. I didn’t want to steal his title calling mine Chris’s Front Porch Podcast but the concept is very similar.

I’ve been blogging for longer than the word “blog” existed. Unfortunately, the title of my blog doesn’t work very well in a podcast. Here’s the background… Set your Wayback machine for the late 1980s. Before the Internet had been invented, there were a variety of online services such as AOL, Prodigy, Delphi, and my service of choice CompuServe. On CompuServe, I had a regular feature that today we would’ve described as a blog although, as I said, that term didn’t exist at the time. It was called “CY’s Eye on Life.” As you are listening to this podcast you are probably asking, “What did he just say? Size ion life. What size? Small, medium, or large? And what does that have to do with living ions? Is this about physics?”

To clarify… CY’s is spelled C.Y. apostrophe S where C.Y. are my initials. I also sign my emails with my initials “cy” so online friends occasionally call me Cy. That is followed by “eye on life” where we spell eye E Y E. So it is my viewpoint about life. CY’s Eye on Life. That works really well in print. But I don’t want to have to explain all of that every time I say the name of the podcast. Audibly the sounds just don’t make sense. I suppose if you’re looking at Spotify or Apple podcasts or wherever and see it written out, then it makes good sense and I can talk about it in the podcast but rather than go through that confusion I came up with a different name.

I think the phrase “Contemplating Life” gets across the same concept but in a way that is much easier on the ears. I think it is also in contrast to the phrase “Contemplating Death.” Although I’m a person of faith, I very much love my life and have often said that when the Angels come to carry me off (hopefully to heaven) they are going to have to drag me out of this world kicking and screaming. That doesn’t mean we won’t spend some time talking about death because it’s an inevitable part of life. After all, life is a fatal condition. I don’t know anybody who had it that didn’t die of it eventually.

There is a small possibility I might do some interviews in this venue but don’t hold me to that.

You can expect these podcasts to be shorter than many. I’m aiming for 10-15 minutes although we might run over today because I wanted to introduce myself before we got to our first topic.
Let’s talk briefly about what you won’t find in this podcast. You won’t find quality production values. There are no musical interludes, backgrounds, or sound effects. I’m using a microphone that I got on Amazon for $17.95. The acoustics in my home office are atrocious. I will try to edit out any takes with obvious background noise like a toilet flushing across the hall from me or the furnace or air conditioner coming on. While I’m not going to guarantee I will get them all.

I am aware I don’t have one of those well modulated NPR sounding voices you typically get in podcasts.

[Imitating NPR voice] Hello… This is Chris Young… Welcome to Contemplating… LIFE.

[Normal voice] No, I’m not going to try faking one like I just did. That’s not me. You get my real voice, pretty much the way I would be speaking to you if we were sitting face-to-face. No offense intended to those who do create acoustically perfect podcasts with interesting production values. It’s a talent I don’t have and don’t care to acquire. I want you to get the raw version of me.

Full disclosure… I am reading this from a script I wrote. If I didn’t, I would ramble even more than I rambling now. I’m trying to keep this reasonably short.

So, that’s enough introduction. Let’s get to today’s topic. The title of today’s episode is “Unintentionally Inspirational.”

A common experience that many disabled people share is being told that they are “inspiring” simply by engaging in ordinary activities. In 2012, Australian disability rights activist Stella Young (no relation to me) coined the term “inspiration porn” to describe this situation. She originally used the term in an article in an Australian Broadcasting System webzine called “Ramp Up” but the term was widely popularized in a famous TEDx presentation she gave in Sydney Australia in 2014. You can find a link to her video on YouTube in the description. I highly recommend that you watch it.

She explains that she uses the word “porn” because it objectifies one group of people (disabled people) for the benefit of another group (non-disabled people).

Popular examples of inspiration porn are Internet memes showing disabled people doing ordinary things with a caption such as “what’s your excuse?” The mantra of people who speak out against inspiration porn is “I don’t exist to inspire you.”

The assumption behind inspiration porn is that having a disability is a terrible thing. The idea that you can get out of bed in the morning, go out in the world, go to work or shopping or to church to the movies… it’s all such a massive accomplishment that you inspire other people with such activities. What’s really going on in this situation is they are saying to themselves that cliché statement, “There but for the grace of God go I.” In other words, no right or how bad my life is, at least it’s not as bad as that poor person sitting there in that wheelchair.

I’m especially amused by people (mostly people of faith) who say things to me such as, “You know God has a special purpose for you.” My response is always, “Indeed he does. Because he has a special purpose for everyone including you.” I then have to bite my tongue to keep from adding, “And I’m pretty sure his plan for you does not include you having such a pitiful condescending attitude toward disabled people.” They assume, that the only way God can be just and allow me to suffer such a horrible fate is that somehow I’m part of His Unfathomable Plan. That somehow a greater good will be accomplished by my horrible condition. I doubt that they appreciate the subtlety and theological accuracy of my response.

Clearly, such attitudes are demeaning, offensive, and inappropriate.

But…(there is always a but)…

While I strongly agree with the party line of the general disabled community regarding inspiration porn, I have some alternative thoughts about the topic of “inspiration” in general.
My position on the topic is summed up in the words, “I have no right to tell you what can or cannot inspire you.”

First of all, let’s look at the word “inspire”. The root of the word is “spirare” which is the Latin word meaning to breathe. When you res-spirate… you repeatedly breathe in and out. The Holy Spirit is often called the breath of God. It is the source of inspiration for Scripture and Genesis 1:2 says “a mighty wind swept over the waters” however the word wind used here in the original Hebrew is ruah which means Spirit or breath of God Spirit comes from that same Latin root word spirare. So to inspire someone is to breathe life into them. Inspiration is a life-giving and life-affirming endeavor. It seems strange to me that there is such a thing as bad inspiration. I’m not talking about being inspired to do bad things. I’m talking about being inspired “for the wrong reasons”.

That brings me back to my position that I don’t think it appropriate for me to tell someone what can or cannot inspire them. I will work to create a more accurate picture of disability and correct any mistaken stereotypes. But I refuse to admonish them for being inspired.

I’ve been called inspiring on many occasions. Some of them were totally undeserved and could correctly be categorized as inspiration porn.

I don’t go around trying to inspire people. I’m flattered when they do find inspiration in me. There have been times when I’ve engaged in what some people might describe as the exploitation of my disability by others. Except for one instance which I will describe in a minute, I don’t think I was being exploited, demeaned, or objectified. Let me give you a few examples of things that happened to me that many disability advocates might find objectionable but I did not.

When I was growing up, I did publicity for various charitable organizations. At age 10, I was on TV for a photo op supporting the 10th anniversary of the local United Way campaign. At about that same age plus or minus a year or two, my friend Estel and I had our photo in the newspaper to support a local Goodwill Industries campaign. While many would say that these poster child activities were exploiting our disability, I have no ill feelings about those activities. In the case of the United Way campaign, I had benefited from programs through the local Muscular Dystrophy Foundation which was mostly funded by United Way money. As a beneficiary of the money donated to United Way, I think it was appropriate to feature someone in that role. The tone of these events was not to portray us as objects of pity. This was in contrast to events such as the Jerry Lewis Muscular Dystrophy Telethon. I could, and perhaps will someday, devote an entire podcast explaining what was wrong with that travesty.

Although Estel and I did not benefit from Goodwill Industries, we did participate in their collections programs and I can appreciate that disabled kids working to help other disabled people was a genuinely appropriate human interest story.

In 1981, there was a feature article written about me in the Chicago Sun-Times because I participated in the Johns Hopkins First National Search for Computer Applications for the Handicapped. I had developed special assistive technology to allow my friend Christopher Lee to access a computer by making a clicking sound with his tongue. Again, the idea of a disabled person helping another disabled person I thought was an appropriate newsworthy story. Christopher and I were also the subjects of a feature by local channel 6 WRTV reporter Barbara Boyd and there was a feature about us in the Indianapolis Star newspaper. I’ve no regrets about any of that. We accomplished something newsworthy.

Some of the publicity and accolades I have received have been totally undeserved. Let’s talk about one of them. I don’t recall what year it was but we will call it the mid-1980s. I had to quit my full-time job because my disability had worsened. I started my own one-man, work-from-home software development and consulting business. One of my clients was the Indiana Department of Special Education. They hired me to create a database for them. Shortly after I completed the work, the annual Governors Conference on the Handicapped was held. Each year, a handful of state agencies traditionally would give out an award to a disabled person recognizing their accomplishments. The Department of Special Education picked me to be recognized that year. I came very close to turning it down because the only thing I did was complete the job for which they hired me.

I discussed the situation with my friend Bill Littlejohn who had worked with me and my mother on a variety of advocacy and legislative projects. His advice to me was, “They need to give you the award more than you need to receive it. Go ahead and let them have their fun.” Bill understood where I was coming from. He knew it wasn’t trying to be humble. I had described the circumstances to him accurately and he knew I had done nothing extraordinary. His attitude was that if I turned down the award, the people giving it would realize their mistake and be deeply embarrassed. Or perhaps they would learn nothing and my Grand Gesture of Rejection would fall on deaf ears.

Other state agencies gave out awards to disabled people that day and when they read the resumes of the recipients it was clear that they had done extraordinary work that deserved to be recognized. When the DSE gave their reasons for giving me an award it was embarrassingly thin in comparison to the other recipients. They handed me the award. I smiled for the camera. The department head who handed me the award asked if I wanted to say anything. I said no.

When I got back to my table, I looked at the framed certificate. They misspelled my name. They called me Christopher when my legal name is actually just Chris. The framed certificate currently lies in a junk pile on the bottom shelf of my bookcase. I kept it only as a reminder not to sell out again.

In contrast, Indianapolis Mayor William Hudnut once named me “Indianapolis’ Outstanding Handicapped Citizen”. During the presentation, they cited my work as a member of the Board of Directors of two United Way agencies and my work as a lobbyist at the Indiana State Legislature where I worked to secure the passage of legislation to make it easier for disabled people to vote. Although my eligibility for the award was directly tied to my disability, the nature and tone of the award were no different than the accolades that the mayor might bestow on anyone else for service to the community. Okay, technically it wasn’t as pure as it could have been had I received recognition in an open category. Critics would say, “They were saying ‘Isn’t it wonderful that handicapped people can be of service to the community just like able-bodied people?'” Trust me, it didn’t feel that way at the time and my opinion has not changed about the event.
Disability advocate Stella Young who coined the phrase “inspiration porn” is clear that there is nothing wrong with being inspiring when you do something truly inspirational. We all need inspiration in our lives. We can all be motivated by the examples of others who accomplish great things. I’m proud of my accomplishments and I’m grateful when people recognize those accomplishments. If someone finds it extraordinary that I have accomplished these things while dealing with the daily challenges of living with a disability I’m not going to admonish them for doing so as long as the recognition is focused on the accomplishment itself. It is okay to mention my disability in the process.

There are many awards and accolades given especially to other minorities such as people of color, LGBT+ people, or specifically to women. Is it racist to accept a black filmmakers award? Is it sexist to accept a woman’s advocacy award? If an LGBT+ person is given an award by an LGBT+ organization for their work in the LGBT+ community do you turn it down because it’s not broader recognition? You have to be pretty damned nitpicky to think so. And so, neither is it inappropriate to have one’s disability acknowledged when citing their accomplishments as being noteworthy. As I said at the beginning of this podcast, my disability doesn’t define me entirely but it is an integral part of who I am and affects absolutely everything I do. To acknowledge that is to acknowledge reality.

Unless I’m teaching or preaching about faith, it is never my intention to be inspiring. Even then, my hope is that you are inspired by the Gospel message and not by me as the messenger. But if you are genuinely inspired by anything I do or say, I am grateful that you found inspiration. If you find this podcast inspiring, that’s okay. I didn’t make it in hopes of inspiring you but if it happens along the way, that’s fine. I hope that the inspiration is for a good reason. I believe that the inspiration in and of itself, even if for misguided reasons, can be a positive thing and I’m grateful that you found it so.

Does that mean I’m a self-deluded ablest? I don’t think so. But then again that’s the definition of self-deluded isn’t it? What does it mean to be ablest? That is a topic we will explore in more depth next week.

Now for a word from our sponsor… No that’s not accurate. Now for a word to our potential sponsors – namely you.

I’m not producing this podcast to earn money. I’m doing it because I want to exercise my writing muscles and like all writers, I egotistically believe that what I have to say will be of value to others whether it is educational, entertaining, and yes even perhaps inspiring. If you find value in what I’m saying, you can express your gratitude by subscribing to my Patreon page for just $5 per month. It will get you early access to this podcast and if I can think of other perks or benefits for my subscribers I will include them at no extra cost. I don’t anticipate having various levels of support. I think just the basic $5 would be plenty generous. It’s not that I’m desperate for money, but a little extra income sure could help.

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[Imitating NPR voice] Please return next week as we continue Contemplating Life.

[Normal voice] See… That doesn’t work for me. See you next week and until then fly safe.

Welcome to Contemplating Life Podcast with Chris Young

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Hello, my name is Chris Young. I am an author, catechist, assistive technology developer, and disability advocate.

In my new podcast “Contemplating Life” I will be discussing a variety of issues including but not limited to: disability, religion, politics, entertainment, and whatever else I can think of.

Please support this podcast at my Patreon site for just $5 per month. You will get early access to the podcast and whatever other perks I might come up with down the road. I’m not looking to get rich but any bit of income would help and it would show you appreciate what I’m doing.

You can find my podcast on YouTube and all of the major podcast platforms. Here are some links.

Click here for a topical index of my episodes.