This week we begin a multipart series recounting my school days in a special education school here in Indianapolis.

Hello, this is Chris Young and welcome to Episode 15 of Contemplating Life.

This week we begin a multi-part series recounting my school days in a special education school here in Indianapolis.

In the mid-1930s, Indianapolis Public Schools built James E. Roberts School #97. It was specially designed for handicapped children and was in many ways in response to the polio epidemic. It was at the corner of East 10th and Oriental Streets on the near east side near Arsenal Technical High School.

The two-story Art Deco building featured ramps, an elevator, and a physical therapy department with a small swimming pool. Students from kindergarten through high school were educated there for 50 years.

The school closed at the end of the 1985-1986 school year. It was used for a variety of purposes for a few years and was considered a candidate for demolition however given its history, there were efforts to preserve the building. It was renovated into an apartment building and is now known as the Roberts School Flats.

In episode 5, I told the story of how my mother tried to enroll me in St. Christopher Parish School. They really weren’t equipped to deal with a disabled child so I was enrolled in Roberts School in kindergarten in 1960 at the age of five.

In the summer of 1960, my parents purchased my first wheelchair. Prior to that, they would just carry me around. Most of the day I would sit in a small chair at our coffee table in the living room where I would play with toys, eat lunch, and watch TV. At dinnertime, I would sit in a high chair at the dining room table.

IPS Schools operated 10 school buses at the time and all of them were used to transport children from all over Indianapolis to Roberts School. In those days, there was no bussing of children to any other school for any reason such as to achieve racial integration. Kids walked or were transported by their parents to their neighborhood schools. There were probably seven or eight high schools and I don’t know how many junior high or middle schools. The Roberts buses were stationed at the school and were occasionally used for field trips by other schools.

The Eagledale neighborhood where I lived was in the far northwest corner of the city and initially, there was no bus route to reach me. They hired an eight-passenger taxicab to pick up several of us in my neighborhood. The cab driver, or perhaps my mother I don’t recall which, would lift me out of my wheelchair and into the taxi. When we arrived at the school, the driver would pick me up and transfer me to a wheelchair that belonged to the school.

There was a girl several years older than me named Erica who lived near here but was just outside the IPS boundaries. I believe she had cerebral palsy although she could walk with difficulty. She persuaded the school to allow her to attend but they would not cross the city limits to pick her up. A family member would drive her to my house and they would sit in the car and wait until the taxi arrived and then she would join us.

I don’t know how long I rode the taxi but it was not for the entire year of kindergarten. At some point, they got a new bus or they rerouted an existing bus to handle the west side. It was an ordinary school bus with the only accommodation being safety belts. The bus driver would lift us out of our home wheelchair and into the school wheelchair upon arrival. And reversed the process at the end of the day.

Among the people who rode that bus with me for many, many years were Chris Fryman who was my age, and Carol Brumett who was about four years older than me. Chris had osteogenesis imperfecta more commonly known as “brittle bone disease”. He used a wheelchair and he had his legs in braces mostly to protect them from breaking. Carol had contracted polio, spent some time in an iron lung, and had minimal use of her arms and legs. They both rode with me for the entire 13 years I attended. (Well Carol graduated before I did.) My good friend Mark Herron who had a form of muscular dystrophy and was a few years younger than me lived right around the corner. He also rode the bus with me for many years. I’ll talk more about him in later episodes.

One of the interesting things about the population of Roberts School was how it reflected the impact of the Salk vaccine for polio. That vaccine became available the summer I was born in 1955. If you looked at my classmates, more than half of the people older than me were there because of polio. No one my age or younger had polio. It’s like someone just flipped a switch and the disease disappeared.

Not all of the kids at Roberts School were in wheelchairs. Some, such as those with mild cerebral palsy could walk perhaps with crutches. Others had severe asthma like my friend Ted Hayes, or a heart condition such as Lily Ottinger, and a few had epilepsy. Many of them probably didn’t need to be segregated into a special education school. Any medical condition that a child had that the average school nurse didn’t want to deal with would get them sent off to our special school. Anyone not in a wheelchair was referred to as a “walker”.

I mentioned that I used a wheelchair that was provided by the school. That doesn’t mean that IPS purchased the wheelchairs. There was little or no extra funding for special education. The wheelchairs had either been donated or had been purchased by the PTA. Every year, we held a cookie sale and the proceeds went to purchase wheelchairs and other equipment. It seemed as though the attitude at IPS was, “Hey… We built you a special school. What more do you want?”

My first wheelchair at Roberts was nothing more than a child-size wooden chair nailed to a plank with four small caster wheels and a handle mounted on the back. I had to be pushed everywhere. It didn’t have large wheels that I could push with my hands. My standard child’s wheelchair that my parents had purchased did have large rear wheels and if I was on a completely smooth flat surface I could push myself a few inches with a great deal of difficulty.

The kindergarten was a large room complete with its own dedicated restroom, a piano for music class, a TV set (something none of the other classrooms in the building had), and lots of wooden blocks and other toys.

The teacher was a wonderful woman named Miss Helen Martin. I’m pretty sure she was still teaching kindergarten when I graduated.

After lunch, she and one of the custodians would set up a bunch of cots and we would spend most of the afternoon in “naptime”. Considering that many kindergarten classes are only half a day, spending the other half of the day trying to nap was not unreasonable. The problem was, everyone in the school had at least one hour of naptime after lunch. I don’t think it went all the way up to the high school level but it did go through junior high which meant 6th, 7th, and 8th grade. We will talk more about nap time in a later episode.

When you get to school, it’s typical for your family, especially grandmas, aunts, and great-aunts to ask, “Have you got a girlfriend yet.” Apparently, they’ve never heard of puberty and don’t realize that those kinds of concerns are not a priority for several years. Yet I still received frequent pressure to answer the question. It seems that my classmate Cheryl was receiving similar pressure from her family to find a boyfriend so, although we were both clueless as to what that kind of relationship involved, we agreed to be boyfriend and girlfriend.

Cheryl was born with no arms. She had tiny appendages perhaps 3 inches long each of which had two tiny fingers. Throughout our grade school years, we would frequently get visitors in the building. They were typically nursing students or special education teaching students. Upon seeing Cheryl, you would hear the word “thalidomide” whispered. The infamous drug thalidomide was prescribed to women in the early and mid-1950s as a very effective method of combating morning sickness during pregnancy. The problem was, it caused severe birth defects in many cases–most often missing limbs. They naturally assumed that was the cause of her condition.

Decades later, I saw a documentary about the drug and did some research of my own. As best I can tell, it was never used in the United States and it was completely discontinued in 1954. I was born in 1955 as was presumably Cheryl. Unless her mother was Canadian or European and was unfortunate enough to have taken the drug shortly before it was pulled from the market, her condition was NOT caused by thalidomide.

Anyway, one day we were sitting at a table coloring. I was about to complete my masterpiece of an airplane flying over houses complete with fluffy clouds and a smiling sun in the sky. Cheryl was sitting on top of the same table that I was using drawing with a crayon between her toes. For reasons I never understood, probably my fault somehow, she reached over and scribbled all over my drawing. I was furious. When I tried to retaliate, she pulled her paper away from me to where I couldn’t reach it. Now I was even more furious because she was exploiting my disability (or rather my inability) to climb up on the table and scribble on her paper. I took that extremely personally. A nasty argument ensued. I don’t know for certain who “went there” first but I will give her the benefit of the doubt and say that I took the argument to the extreme that I’m about to describe.

“I don’t want to be your boyfriend anymore!”

“Good! I don’t want to be your girlfriend anymore!”

“I don’t think anybody will ever want to be your boyfriend because you can’t hug them or hold hands with them because you got no arms.”

“So… you’re never going to get married because you’re in a wheelchair and you can’t walk down the aisle!”

At that point, Miss Martin rushed over to intervene and broke up the fight.

Looking back at the incident, I find it fascinating that it illustrated a five-year-old’s concept of a boyfriend/girlfriend relationship. For the boy, it consisted of hugging and holding hands, and the girl was already anticipating marriage.

Although James E. Roberts School was built with a physical therapy department, ramps, and elevators to accommodate our special needs, the reason that most of us were there was to protect us from the cruelty we would encounter from other students because of our disabilities. This incident, and many others I could recount, illustrates that we were more normal than they thought. We could be just as cruel to one another regarding our disabilities as if we were integrated into a regular education setting with able children.

Cheryl left Roberts School for a couple of years but I never knew why. When she returned, she was a year behind me. She attempted to use artificial arms but they never were worth the effort for her. By the time she reached junior high, like most walkers, she moved on to a regular school.

When I was in my early 20s, I saw a newspaper feature article about her. The accompanying photo showed her sitting at a desk at her office job typing on a typewriter with her feet. It was your typical feel-good piece about a disabled person making it in the world. She was well-employed and engaged to be married. Some 62 years after our argument, she was right and I wasn’t. She got married and I didn’t.

I’ve got one more story about Cheryl that reflects almost as poorly on me as the one I just told but it’s too funny not to tell.

Fast-forward about 14 years and I’m in my first-semester college physics class at IUPUI. My instructor is a wonderful educator Professor Emeritus Golden Flake. Yes, somewhere along the way Mr. and Mrs. Flake actually decided to name their little boy “Golden”. His motto was, “Physics is Fun” with “fun” spelled PHUN.

One day he was lecturing about the conservation of rotational momentum. He explained, “Did you ever wonder why you swing your arms when you walk or run?” Having done neither yet observed the same I was still curious. He continued, “It’s because when you put one foot in front of the other, and your other foot goes backward, your hips and entire lower body twist. In order to keep from waddling, you have to swing your arms in the opposite direction to absorb that rotational energy.”

I turned to my friend Mike Gregory and said, “Eureka! That explains Cheryl.“ To which he replied, “What? Who?” Later when I had time, I told him about Cheryl and her disability. I explained that when she became a teenager, what God had denied her in the way of limbs, he more than extra made up for in her ample bosom. The poor girl – although she kept her bra straps extremely tight, when she walked her boobs bounced all over the place.

I told Mike, “Now I understand why. All of that rotational momentum had to go somewhere and she couldn’t swing her arms so it went into her…” Mike interrupted to finish my sentence, “coupled harmonic oscillators.”

Mike went on to tell me about a book of humorous essays he found in the library titled, “Stress Analysis of a Strapless Evening Gown”. It was a spoof of scientific journal papers in which they applied rigorous engineering and scientific disciplines to ordinary events. The title of the book was the same as the lead essay. It explained in extreme engineering detail complete with force vector diagrams of what it takes to avoid a wardrobe malfunction in a strapless evening gown. Mike suggested if they ever did a volume 2 that I should submit a paper about my kindergarten girlfriend.

Admittedly the whole story is very misogynistic but hey… We were 19-year-old college students. What do you expect?

I found the book on Amazon while preparing this podcast. I couldn’t resist the nostalgia and I ordered a used paperback copy for $10.

In our next episode, we will continue the saga of my school days at Roberts School. Somewhere along the way, we will have my reading of an award-winning article I wrote about my experiences there.

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In this week’s episode, we discuss how the general public can take disability language and abuse it in negative ways.

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Hello, this is Chris Young, and welcome to another episode of “Contemplating Life”.

This week we will conclude our two-part series on the terminology used to describe disability. Last week we talked about how words are dependent upon consensus and context. Over the years most consensus and context about the use of various words related to disability has evolved. In some cases, the consensus has not caught up to the new context.

We focused mostly on the evolution of the words “handicapped” and “disabled”. While I understand many of the reasons for the change, I still think that the word “handicapped” should not be considered offensive and has a useful definition distinct from “disability”.

A brief aside, I’m making a serious attempt to keep these podcasts under 30 minutes. When I have a lot to say on a topic, it’s becoming difficult to find a good place to split the episode into two pieces. We have one more aspect of the word “disability” to discuss before moving on to this week’s primary topic – the way the general public has misused and abused disability terminology in offensive ways.

Having evolved from handicapped to disabled, another debate arose in the community. Should we use the phrase “disabled person” or “person with a disability”? Fortunately, the debate never got very furious. At one point many disabled people concluded the terms were interchangeable because there was no clear consensus. The “person with a disability” phrase is called “person first” terminology. Its advocates claimed that we should “put people first” and that disability was secondary. Okay… Maybe…

Ben Mattlin said in a recent interview that “disabled person” seems to be winning. The argument was that “person first” by its nature puts the disability last as if we are trying to hide it. If we are to have disability pride, then put that word up front and wear it proudly. He also points out the obvious awkwardness of the phrase “person with a disability” in contrast to the simplicity of the phrase “disabled person.”.

My argument is summed up in the words “We are speaking English”. In English, we put the adjective before the noun. The noun is “person”. It is the subject of the sentence or phrase. The word “disabled” is the adjective describing the subject. “Disabled person” is simply proper English.

Now let’s move on to our main topic – offensive words used to describe disability.

Before there were handicapped, the common word in use was “crippled”. Outside its use to describe a disabled person, crippled evokes the connotation of damaged into immobility or uselessness such as, “The damage in the engine room crippled the ship and left it adrift.” People with disabilities were seen as damaged goods who were incapable of functioning. Certain hospitals were described as Crippled Children’s Hospitals. Polio was described as a crippling disease because it would literally cause body parts to become deformed and useless. By its nature, the term is only applied to physical or orthopedic handicaps.

Today the word is simply disused as archaic and for good reason. It evokes such a negative pity-driven image. Note, however, the shortened form “crip” is often used within the disability community humorously as a way to reclaim a negative word and turn it positive. A case in point is the award-winning 2020 Netflix documentary Crip Camp about a summer camp for disabled teenagers. I have similarly heard the word “gimp” as a word disabled people might use to ironically or jokingly refer to themselves. These words fall into the category, “we can use them about ourselves but you can’t.” This is somewhat in the same vein as the way African-Americans use a form of the n-word ending with the letter “a”.

There are a number of cringe-worthy words and phrases that have been roundly rejected by the disability community. Awkward phrases such as “differently-abled”, or “handi-capable” are ridiculous ways to avoid the word “disability”. Also on the do not fly list is “handicapper” unless you are talking about someone who handicaps a horse race. These kinds of words are considered condescending, and ableist, and have been soundly rejected by the disabled community.

Many parents of disabled children describe their kids as “special needs” children or themselves as parents of a special needs child. The term “special needs” seems to be falling out of favor and I have to admit I’m not exactly sure what the issue is. My experience is that parents who use this terminology typically are in an ongoing struggle against the school system or other agencies to have the needs of their children met.

I’ve heard it argued that disabled children have the same needs as any other child. They need to get to and from school. They need an education. They need to eat lunch. They need to go to the bathroom. While the solutions to these needs are nonstandard, there is nothing inherently special about the needs themselves.

I’m reminded of the funny scene from the 1985 film Mask starring Cher as the mother of a teenager, played by Eric Stoltz, who had a disfiguring medical condition. She was arguing with a junior high school principal trying to get her son enrolled.

The principal says, “This is a public junior high school, Miss Dennis. There are special schools with wonderful facilities that might be more appropriate for his needs.”
Cher replies, “Do you teach algebra and biology and English here?”

“Of course.”

“Those are his needs.”

I can buy that argument to a certain extent. But in fairness, the boy in the story, unlike most children described as special needs children, didn’t require any extra services, adaptations, or accommodations.

Should we describe these kids as “children in need of special solutions to their ordinary needs?” Wow! And you thought “person with a disability” was awkward compared to “disabled person.”
I have no objection to the words “special needs” and I don’t believe that the people who use that phrase, again mostly parents, are in any way shape, or form perpetuating any kind of negative stereotype about their children. As I said earlier, they are mostly preoccupied with getting the services and accommodations that their children need.

Probably the best example of the way in which disability terminology has evolved over the years as both context and consensus has changed is the way in which we describe intellectual disabilities. If there ever was a moving target of political correctness, this is the worst and sadly we may be stuck in a never-ending cycle of evolving terminology.

You are probably unaware that the words “idiot”, “imbecile”, and “moron” were originally the medically correct terminology for people with various degrees of intellectual disability. Unfortunately, the words were co-opted by the general public as insults towards people who were behaving irrationally or in other ways were being just plain stupid not as a result of any disability.

In an attempt to come up with new terminology, the phrase “mental retardation” was coined. Outside of disability circles, the meaning of the verb “to retard” is to slow down or impair the progress of something. One often heard people with intellectual disabilities described as, “There is nothing wrong with them… They are just slow.” Depending on the tone or the context, that’s not altogether a bad characterization. People with intellectual disabilities can be highly functioning self-sufficient people. Mental tasks simply do not come as easily as they do to the average person. People who were described as “slow” in fact probably had some sort of learning disability.

The bottom line is that the words “mentally retarded” were a well-reasoned attempt to create terminology that was accurate, useful, and not offensive. In special education programs, there were three levels: “mildly mentally retarded”, “moderately mentally retarded”, and “‘severely/profoundly mentally retarded”. These categories were typically defined by a range of IQ levels and corresponded directly to the previous words “idiot”, “imbecile”, and “moron” although I’m not certain in what order.

Unfortunately, the insensitive general public once again turned the terminology into a derogatory insult. The word “retarded” and its shortened form “retard” became so derogatory and offensive that now they are often referred to as the “r-word”.

Initially, children with intellectual disabilities were institutionalized and warehoused with no opportunity for personal growth or fulfillment. Eventually, parents rejected medical recommendations of institutionalization and kept their children at home surrounded by a loving and supportive family. They began seeking specialized programs and support systems for the children. Organizations known as ARCs began appearing in the 1950s. The acronym initially stood for “Association for Retarded Children”. As their clients aged and continued to need a variety of services, they changed their name to “Association for Retarded Citizens”.

Like the NAACP, these organizations were now faced with a historical acronym based on archaic and offensive terminology. Local ARCs as well as the national organization still retain the name ARC but it is no longer an acronym. Their web pages explain the history of the term. They explain that they kept the ARC designation as a nostalgic respect to their history.

While researching this history I looked up the local Marion County ARC which served Indianapolis as I was growing up. The first page that came up was Marion County ARC in Osceola Florida. They cleverly say that the letters now stand for “Advocacy Resource Center”. They are affiliated with the National ARC yet the national organization hasn’t picked up on this clever renaming nor has the local Indianapolis ARC organization now known as “Noble ARC” named after the “Noble Center” sheltered workshop.

Today, many people use the designation “developmental disability”. But as I explained earlier, depending on what definition you use for DD, I qualify as developmentally disabled yet I am a college graduate who came just two IQ points short of qualifying for Mensa membership. It is inappropriate to assume that a developmental disability is an intellectual disability yet many fail to make that distinction.

There is a part of me that wishes that the ARCs and other disability advocates had drawn a line in the sand and stood up for the word retarded and insisted that the word in and of itself should not be considered offensive. I wish they had spoken out more emphatically against the misuse of the word rather than allowing the word itself to be canceled. The problem is, there is a serious risk that people will co-opt new terms the same way they have in the past. The insensitive public is very clever and they can turn any terminology into an insult.

Here is a fascinating example. Many years ago I was sitting in the parish office at St. Gabriel Catholic Church working on budgets with my friend Judy who was the parish secretary/bookkeeper. In those days, the parish also operated an elementary school. I overheard a conversation in the hallway as a teacher was yelling at a boy. Apparently, he had been tasked with the job of carrying classroom trash out to the dumpster in the parking lot. It was about 25° outside that day. He was confronted by a teacher as he reentered the building.

“Johnny”, the teacher screamed, “Why aren’t you wearing a coat? We don’t run a special education school here!”

It was one of those rare moments in my life where it was probably fortuitous that I have a disability. I probably would have gone out to the hall and punched the teacher square in the face. Well, perhaps not. I was so stunned by what she said I couldn’t move. To this day I regret not rolling out into the hallway and giving her a piece of my mind.

Essentially, she could not have been more insulting if she had simply called the boy a freaking retard. In fact, her euphemism was even more offensive because it not only disparaged people with intellectual disabilities, it disparaged anyone who was educated in a special education environment including myself. Furthermore, my experience with people with intellectual disabilities such as Down syndrome suggests they would be far less likely to go outside without a coat, once you had told them the rules, than would your average belligerent 10-year-old boy. I was especially disappointed not only that she had said such a thing but that she said it to an impressionable child. He was going to grow up thinking that special education was a euphemism for stupidity.

Here’s another brief example of how you can turn any disability language into an insult. I once heard a standup comedian talking about a guy she knew who wasn’t exactly the brightest person around. In questioning his intellect, she said she asked him “When you went to school, did you take a long ride on a short bus?” I nearly fell out of my wheelchair laughing. Although it was highly offensive, I thought it was phenomenally clever. Then again, I’m such a student of comedy that I can laugh at offensive things routinely. Sorry, it’s a character flaw.

Prior to hearing that joke, I had never heard the phrase “ride the short bus” used as an insult yet a Google search revealed a slang dictionary entry indicating that it was a widely used slang insult to one’s intelligence.

In case you don’t get the reference, undersized school buses are frequently used to transport disabled children to special education programs sometimes long distances between school districts. Each individual school district often can’t support a variety of special education programs so they enter into cooperatives in which special education programs are consolidated and shared between districts. Thus the stereotype of a long ride on a short bus.

Although the school bus I rode every day to a special education school was a full-size bus, it exclusively carried wheelchair passengers. There were only about seven or eight of us on the bus. Had we not been in wheelchairs, a short bus would have been sufficient to take us on a very long ride all over the west side of Indianapolis to collect us and transport us to the special education school on the near east side of the city.

Although I didn’t ride a short bus, I identify as a short bus rider.

The bottom line is that no matter what terminology we use to describe any kind of disability, there is an ongoing risk that the words will be misinterpreted, misused, and abused. This struggle to accurately and sensitively identify ourselves as disabled people is likely to continue for a long time. The problem isn’t with the words themselves. Words are just an abstraction. They are a way to allow us to communicate about disability and contemplate what it means to be disabled.

While I agree that words are powerful and should be used properly, it seems to me these days people have become too sensitive about words. I recall the days when we taught our children the adage, “Sticks and stones can break my bones but names can never hurt me.” I’d like to see that lesson resurrected.

The meaning of words depends on consensus and context. If we don’t work hard to ensure consensus and understand context, no matter what words we use, our ability to communicate concepts related to disability and to think about disability will be severely… uh… will be severely… Oh hell… Just say it Chris…it’s the right word in this context… Okay, let’s start that sentence over again.

If we don’t work hard to ensure consensus and understand context, no matter what words we use, our ability to communicate concepts related to disability and to think about disability will be severely handicapped.

Sorry, not sorry… I just couldn’t resist.

Anyway, that’s just my opinion… I could be wrong.

As always, I welcome your comments.

In the opening episode of this podcast, I said I would be talking about a variety of topics that included disability, religion, politics, and entertainment. I have lots more to say about disability and my life living with a disability but I think it’s time we move on to a different area. Next week I will discuss my off-again, on-again relationship with God and my journey of faith.

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In this week’s episode, we talk about the evolution of disability terminology, especially the transition from the word handicapped to disabled.

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Hello, this is Chris Young. Thank you for joining me for the fourth episode of “Contemplating Life”

Today we’re going to continue talking about disability issues. In our recent episodes, we discussed what it means to be inspiring and to talk about ableism. Today we begin a two-part series on the language used to describe disability.

I previously mentioned that I was tending to present the standard party-line views on a topic and then explaining how I disagreed with parts of that position. Today we are going to turn things around. Having lived with a disability for 67 years, I haven’t kept up with modern terminology and definitions. So, I’m going to begin by explaining the terminology I’ve used for more than half my life. I’ll explain my reluctance to abandon those old definitions. Then I’ll talk about how I’ve recently come to appreciate newer ways of approaching the definition of disability.

Using the proper language to talk about disability is not just a case of being politically correct. The language that we use to describe disability is a reflection of our attitude about disability and it affects the attitudes of others.

Words have power. Words have meaning. If we are going to wield that power responsibly and sensitively we need to understand the real meaning of the words we use.

Pardon me while I go off on a philosophical tangent and talk about words in general…

What is a word?

It’s an abstraction. It’s a way that allows us to talk about things that are not necessarily present or are themselves abstractions with no physical form.

I just said words are about communication but it goes much deeper than that. We think using words. When we think about something, we use words in an internal monologue. Sometimes, we have feelings or experiences that are beyond words. This not only illustrates the inadequacy of language to communicate these things, but it also limits our ability to reflect upon them, think about them, or analyze their meaning in our lives. We can remember such feelings and experiences and perhaps through such recollection relive them. But when it comes to thinking, we are limited by the inadequacy of words.

People who speak foreign languages find themselves thinking in those languages as well. The only foreign language I ever studied was French and I got terrible grades in it so I’m no expert. As poorly as I performed in French, on rare occasions I find myself recalling a French idiom or phrase that doesn’t have a good English equivalent and I have been able to “think in French”. I can only imagine what it’s like for someone who has a good mastery of more than one language. The ability to contemplate things differently and have a richer experience of understanding must be phenomenal.

Words require consensus. Words have context. When either consensus or context is absent, words become meaningless.

When I say that words are an abstraction subject to consensus and context let me give some examples. If I say to you the word “elephant”, I have imparted to you an image of a large gray animal with treetrunk legs, big floppy ears, and a long prehensile nose. Simply speaking the word “elephant”, doesn’t cause one to appear in front of you. There is nothing special about the sound of the word nor the sequence of letters of its written form that necessarily ties it to that particular creature. It is only by consensus that that sound and that sequence of letters have been assigned as the label for that particular creature.

This idea of consensus is illustrated by the fact that different geographical areas with different cultural traditions have different languages that assign different words to the same object. While the word elephant translated into other languages might sound roughly the same, the English word for a small hopping amphibian is “frog”, in German it’s “frosch”, in Spanish it’s “rana”, in French it’s “la grenouille”, and so on for countless other languages. . Different populations and cultures… different consensus… different words.

Context is also important. The word “frog” can be a hopping reptile or a derogatory term for French people. The elephant in the room can be physical or metaphorical. Context is important.
Again, without consensus and context – words are meaningless. Or at least they should be. Sometimes we apply our own consensus and context and misinterpret words.

The words we assign to animals or objects are highly unlikely to evolve over time. However, the meaning of other words has evolved throughout history as the consensus evolves and as the context of the times evolves.

The words that we use to describe race, gender, and disability are much more likely to evolve as our attitudes about these topics have evolved. For example, the technical name for dark-skinned Africans is the “negro race”. That evolved into the pejorative “n-word” and the attempt to be less offensive with the phrase “colored person”. That phrase however has so many roots in segregation such as “colored only” or “no colored allowed” that it also has a highly negative context. With a sense of pride, people began describing themselves as Black and/or African-American which today are both considered socially acceptable.

The consensus has evolved but context is important as well. It is only through consensus and context that when we say the phrase African-American that we don’t wonder if the person was Caucasian, born in South Africa, and living in Mexico, or perhaps of Middle Eastern Arab descent living in Canada, or a person born in Israel living in Argentina even though technically the label African-American would apply to each of these three.

Given the negative history of the phrase “colored people,” I’m not quite sure why “people of color” is acceptable and doesn’t carry the same stigma. But that’s probably a topic for a different episode. I’m just an old liberal white guy so what do I know?

The language used to describe gender and the use of a variety of pronouns also reflect our evolving views on gender.

The language we use to describe disability has evolved and that’s what we really want to discuss today. This discussion flows right out of last week’s topic of ableism.

Not only have the words that we use to describe disability evolved during my lifetime, but my own views about those words have also evolved significantly in recent months. Let’s explore some definitions of words and the way I learned them growing up.

Typically, I begin with either a disease or a medical condition. While there are technical differences between the two, it generally starts with one or the other of those.

I have a disease. It is a genetic neuromuscular disease called Spinal Muscular Atrophy Type 2. There are probably a dozen or more types of neuromuscular diseases. Other examples of diseases that cause disability include polio, cancer, diabetes, hemophilia, AIDS, and diseases related to blindness/vision impairment or deafness/hearing impairment. Diseases can be genetic or acquired.

Somewhat distinct from diseases are other medical conditions caused by accident or injury. For example, spinal cord injury, traumatic brain injury, or cerebral palsy which is usually caused by lack of oxygen at birth. Technically these would not be considered “diseases”.

The distinction between disease and medical condition is not a hard and fast line. I suppose technically you could say that some diseases cause medical conditions. For example, HIV causes AIDS.

My concept of “disability” is that it is a consequence of a disease or a medical condition. A disability is something that you are literally dis-able to do. In my case, it is primarily a mobility disability. I never had the necessary physical strength to walk or stand. As my disease has progressed, I’ve lost what limited use of my arms that I once had. I have only minimal use of a few fingers.

Other disabled people have paralysis and a lack of sensation or perhaps a lack of muscle control as in cerebral palsy. Some cannot see, hear, or speak.

As I was growing up and for most of my life, the most common word used to describe disabled people was “handicapped”. For various reasons, some of which I don’t understand nor do I agree with, the word “handicapped” has fallen out of favor. Let me define “handicapped” the way I felt it was used when I was younger and it was the commonly accepted terminology. Under these definitions, there was a difference between handicap and disability.

The disability was your basic limitation caused by your disease or medical condition as we described earlier. Your handicap was the interaction between that disability and your environment. When your disability prevents you from doing things that you reasonably want to do, or that society and your environment expect you to be able to do, then it becomes a handicap. The general meaning of handicap is it is some sort of disadvantage that you have.

One of the phrases to which disabled people often object is, “we all have disabilities.” That’s sort of the disability version of the statement, “all lives matter.” However, under the technical definition of disability as I defined it, this statement is true. Here are some examples of disabilities that everyone has:

You can’t fly through the air like Superman, nor do you have his strength, x-ray vision, heat vision, or other superpowers. You can’t stretch like Reed Richards of the Fantastic Four nor turn invisible like Susan Storm. You can’t read minds like Professor X of the X-Men. These are disabilities we all share. While it might be fun to possess the superpowers of our comic book heroes, no one reasonably expects to be able to do those things. Nobody else reasonably expects you to be able to do these things. You don’t live in an environment designed primarily for those who have such abilities. Therefore these “disabilities” don’t present us with a “handicap.”

Under these definitions, it is possible to have a disability that does not handicap you.

Let me give an example. We can call it hypothetical but it’s based on a real person I know who went to the same special education grade school that I went to. Our subject has osteogenesis imperfecta which is more commonly known as brittle bone disease. It is the same disability that advocate Stella Young had that we discussed in episode 1. Like most people with OI, his growth was stunted and he is a Little Person. He also uses a power wheelchair. After I knew him in grade school, he went on to earn a law degree and has a successful practice which includes being a consultant for companies regarding ADA and Section 504 compliance. At one time I’d considered becoming a lawyer and this guy has the career I would have liked to have if I had become a lawyer. He is married. Has a son. Drives his own specially equipped van. His law practice is thriving. While I can’t honestly say what his day-to-day life is like or what challenges he has faced, by my definition he is disabled but he has few if any handicaps.

Through technology, accommodations, and support systems, his disability does not significantly limit his capability to do the things that he wants to do, which society expects him to do, or his environment assumes he can do.

One of the phrases that is often objected to by disabled people is the idea that you can “overcome a disability”. I totally agree that short of a medical cure that removes the underlying cause of the disability, you can’t overcome it. In contrast, you can overcome a handicap.

It bothered me when the word handicap was phased out in favor of disability especially when it comes to government programs. It was my belief that programs should help people with handicaps because that’s something you can do something about. As we discussed last week, no amount of accommodation, support systems, technology, or other benefits short of a medical cure is going to eliminate a disability. But it can make a huge difference in mitigating or even eliminating one’s handicap.

My lawyer acquaintance might be eligible for a variety of government programs many of which he may not need. But because he is disabled he is eligible. In previous legal definitions, he would not be eligible because he is not handicapped.

All of the above is based on my definitions of the words handicapped and disabled and I believe they represent the views of most of the disability community as I was growing up and in my young adult years. But as we’ll see, these definitions have evolved over time and it’s taken me some time to comprehend how they have evolved. Some of my concerns about the transition from handicap to disability have been addressed as I’ve gotten deeper into the subject.

A little over a year ago, famous YouTuber Shane Burcaw who has the same type of SMA as I have, created a video called, “Things you should NEVER say to a disabled person.” The word “never” was in all caps. He and his able wife Hannah post videos several times a week talking about their life as an inter-abled couple. I highly recommend their YouTube channel and I’ll provide a link in the description. I really liked about 90% of what they had to say and I was inspired to create a reaction video of my own also linked here.

Shane spoke out against the use of the word handicap and ever since then, I’ve tried to do research on why the word has not only fallen out of favor but is considered objectionable to many disabled people. I listened carefully to what Shane had to say. I also read the book “Disability Pride” by Ben Mattlin which I referenced in previous episodes. And I researched other online sources. I still believe that there is nothing objectionable about the word handicap as I have defined it. I still insist that there is a distinct difference in meaning between disability and handicap. However, my disappointment or objection to it being phased out of use has somewhat diminished.

Here’s what I’ve learned from my research about the word handicap.

The origin of the word handicap comes from a medieval English game called “hand-in-cap” in which players trade items in the presence of an umpire. According to Wikipedia, the game goes as follows. The umpire decides whether the items are of the same value and if not, what is the difference in value. Both players and the umpire then place forfeit money in a cap. Both players then place a hand in the cap and withdraw it. An open hand means that you agree with the evaluation of the umpire and a closed hand means you disagree. If both players agree, then the assessed value difference is paid, the items are traded, and the umpire gets the forfeit money. If both players disagree, no trade occurs, and the umpire gets the forfeit money. If one player agrees and the other disagrees, there is no trade and the player who agreed gets the forfeit money.

The concept of a neutral third party trying to even things up was extended to handicapped horseracing. If a particular horse was thought to have an undue advantage, officials would determine that it had to carry a specific amount of extra weight to make the race more competitive. In the early 20th century, derived from the idea of handicapped races, the term handicap began to be applied to disabled people because they carried a greater burden.

Shane and others make the claim that the word handicap originates from disabled street beggars who would sit on the sidewalk with their cap in hand begging for money. While I can agree that if someone made the connection between someone with their “hat in hand” and a disabled person, the word handicap might somehow bring forth that image. I specifically used the phrase “hat in hand” because that is the more common way to describe beggars. I don’t believe I ever heard that described as “cap in hand” and if it did, how do you reverse the words to get the phrase “hand in cap” and thus handicap?

I was born in 1955. I went to a school that was described as a school for the handicapped. It was the common word in usage all throughout my school years and much of my adult life. I recently came across an old videotape that I had shot at the 1983 Indiana Governor’s Conference on the Handicapped so I know the word was being used not only in government but in the broader community in the mid-1980s and my guess is several years beyond. There is a link to the video in the description here.

In all of that time, among the extremely few people I encountered who were beginning to prefer disability over handicap, I never once heard the excuse that their objections were based on the idea that it portrays us stereotypically as beggars. Until recently, I never heard any discussion either positive or negative regarding the origin of the word. We were aware of the connection to handicap as it relates to sports but I never heard the origin of the word or why it was used in either sports or disability language.

Shane my man, I respect you and love what you do to bust stereotypes and educate people about disability issues. But I think you’re off the mark when you object to handicap based on its alleged origins regarding beggars. Handicap has other meanings not only in horseracing but in golf, chess, bowling, and possibly other sports. One can easily make the connection between the medieval game and the use of the word in these sports. Why would the word handicap have as its origin the idea of a beggar as it is used in sports?

Handicap does imply a burden or a disadvantage. I can understand why disabled people don’t want to perpetuate the view that they are burdened or that they are a burden. Go back to my rant last week and you’ll see I find nothing objectionable about the idea that a handicap or disability can be burdensome. It’s a burden I endure with as much grace as I can muster but it is a burden nevertheless.

In that video from the Governor’s Conference on the Handicapped from 1983, the word handicap was always used in a positive light but there was other language that today we would consider blatantly ablest. In the opening invocation and in the governor’s keynote address, there were tributes to Indiana State Senator Charles E. Bosma who had recently passed away. He was a fierce advocate for disabled people. However, at a couple of points, he was described as being an advocate for “those less fortunate than us” and “the downtrodden and oppressed.”

If the connection between the word handicap and the idea of bearing a burden perpetuates ablest attitudes, then I can understand why it has been phased out in favor of disability. Note, however, that the transition has not been smooth within the disability community. There have been, and may still be, people who see the word disabled as being synonymous with useless or incapable. They would say that handicapped is an acceptable term even if it does imply a disadvantage because realistically that’s accurate. It’s better to be accurately described as being at a disadvantage than for the implication that you are incapacitated (and by extension worthless).

Obviously, I have no negative feelings about either term.

As I mentioned earlier, part of the reason that I mourn the loss of the word handicap is its use in legal definitions, especially entitlement programs. However, my research has shown that the current legal definitions of disability are written in such a way that they are functional definitions. For example, at one time, the definition of developmental disability was a disability with onset before age 22 and included mental retardation, epilepsy, cerebral palsy, and other similar conditions. This is the same sort of medically based definition of disability that I grew up with.

The new definition of developmental disability also speaks of onset before age 22 but goes on to say that it is a disability that requires a variety of interdisciplinary services and that results in a substantial functional limitation in at least three of the following major life activities: self-care, understanding and use of language, mobility, self-direction, capacity for independent living, and economic self-sufficiency.

Under the old definition, my medical condition of neuromuscular disease did not qualify as DD yet my friend Christopher Lee who had cerebral palsy did qualify. While our medical diagnoses were different, the types of services we needed were very similar. Under the new definition, I have a substantial functional limitation in four of the seven listed areas. They are self-care, mobility, capacity for independent living, and economic self-sufficiency. Thus I qualify for programs for developmentally disabled people.

In other words, the legal definitions of disability are no longer medically based. They are functionally based. The new definition of disability is extremely close to my traditional definition of handicap. So in many ways, I feel better about the transition between the words than I have felt for many years.

Ben Mattlin reports that people have lost ADA accommodation lawsuits even though they appeared to have a disability. The loss was based on the idea that they already had sufficient technology or accommodations to meet their needs. Under my old definitions, the court might have ruled, “You are disabled but not handicapped.”

In my video response to Shane and in other blog posts and essays, I have argued that if handicap is not the correct word to describe the way in which your disability interacts with your environment then we need a different word. But in some ways, that was because I was stuck on a medical model of disability. So… if disability now refers to environmental and social interaction rather than a medical model, do we need a new word for the medically based concept of disability that I have used for years?

I need more research but I think that the common practice is to talk about a social definition of disability (sometimes also called a functional definition of disability) versus a medical definition. If you’re going to add those adjectives, then I’m satisfied that we are on the same page. But I think there are a lot of people, especially my age, and possibly in the general able population, who hear the word disability and think of the medical model. So if the default definition of disability is a social disability or functional disability then we have a lot of education to do to make sure that people really understand that we are talking about interaction with expectations and environment in the same sense that I defined handicapped and not the old medical model.

The consensus has not caught up to the new context.

I have much more to say about language related to disability but we need to wrap up this episode. In next week’s episode of “Contemplating Life”, we’ll talk about the ways in which the general public co-ops, misuses, and abuses disability language in a highly offensive manner.

As always, I welcome your comments.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As always, I welcome your comments.

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

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.

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.