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.

Here is the YouTube version.

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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.

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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.