Episode #6 “The Little Boy That God Made” (1st in a series on faith)

In this week’s episode, we begin a multi-part series about my off-again, on-again relationship with God and the Catholic Church. I’m not trying to evangelize anyone or be a preacher. I’m just here to tell my story which I hope is entertaining and informative.

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Shooting Script

Hello, this is Chris Young, and welcome to episode #6 of “Contemplating Life”.

In my first episode, I promised that we would cover a variety of topics among them disability, religion, politics, entertainment, and whatever else I felt like talking about. In the first five episodes, we talked about my experiences living with a lifelong disability and some of the issues related to that disability. Today we are going to begin a multi-part series on my off-again, on-again relationship with God and the Catholic Church.

Let me reiterate my disclaimer from the first episode. When I discuss religion, I’m not specifically trying to evangelize or proselytize anyone. I’m just sharing my views and experiences and perhaps explaining a little Catholic theology along the way. I hope that it’s entertaining and informative. If by chance, you find it sparking something in your own faith journey that’s fine also.

My mother was raised Catholic and practiced the faith her entire life. She attended Cathedral Grade School and St. Agnes Academy which was the all-girls counterpart to the all-boys Cathedral High School.

My father came from a mostly nonpracticing Christian family. He rarely if ever attended church growing up although he had fond memories of attending a church-sponsored summer camp one summer.

When my parents were married in 1954, you had to jump through a lot of hoops to have a mixed-faith marriage in the Catholic Church. My dad had to attend a series of about a half-dozen instruction classes with the priest. He also had to formally agree that his children would be raised Catholic. He had no objection.

I was born eight months and two weeks after they were married. When I was old enough to do the math, Mom insisted that I was two weeks premature. After me, she had five premature babies that she only carried for about six months each. None of them survived more than 48 hours. She also had a number of other miscarriages. The explanation that I was two weeks early seems completely credible. And so what if the folks jumped the gun a little bit?

If you are watching the YouTube version of this podcast you can see the 8 mm color home movies that my dad took of me outside my grandmother’s house on the day of my baptism. I was dressed in a long white baptismal gown that made me look like a girl. Years later we transferred the film to VHS and later DVD and now YouTube. There is no footage of the actual baptism because home movie cameras require a great deal of light. I doubt that the priest would have allowed filming using an awkward, intensely bright, and annoying light bar.

Although it doesn’t have anything to do with my faith journey, I might as well recount the few early childhood memories that I have.

From the time they were married until I was nearly 4 years old, my parents and I lived in a small one-bedroom duplex on W. 34th St. on the near west side of Indianapolis, near the canal. I only have a couple of vague memories of living in that house. I remember going next door to the other half of the duplex and sitting on the floor playing with the neighbor’s daughter who was about my age. She had a small toy iron and an ironing board. I used it to smooth out a tiny doll’s tablecloth while the girl prepared a tea party. I don’t know why I was so fascinated with the process of ironing and why I retain that memory so vividly. Perhaps it was that it creates order out of chaos.

I remember sitting in my dad’s lap on a lounge chair on the front porch while my dad was cleaning his 22 caliber hunting rifle. His friend George Brake was sitting in the other chair and they were planning a hunting trip. He had a book called, “The Shooter’s Bible” which was a reference book with photos of hundreds of different kinds of firearms. My dad was in no way what you might describe as a gun enthusiast. He had that 22 rifle and a 22 pistol but only went on a couple of hunting trips when I was very young. The only other time I ever recall him using a gun years later was to dispose of a possum that had infiltrated our garage.

I recall a TV repair man coming to fix our TV at that house. I thought TVs were magic so he must’ve been the smartest person in the world if he could repair it.

I recall a deliveryman delivering a set of dresser drawers and my mom telling me that that was going to be furniture in my bedroom when we moved to the new house. I continued to use that dresser until I was about 30.

In May 1959, just before I turned four years old in July, we moved to a newly built home on Cossell Dr. in the Eagledale neighborhood on the northwest side of Indianapolis, just north of Speedway. I still live in that same home 63 years later.

At the time, we were in the geographic area of St. Christopher Parrish on Lyndhurst Dr. in Speedway about five minutes away. However, my earliest recollections of attending church were at St. Bridget’s Church on the corner of West St. and St. Clair Ave. I remember being carried into the side door of the church by my mother and/or my grandmother on a couple of occasions. Inside the door was a tiny vestibule featuring a rack of votive candles. There was a small wicker basket to drop in donations when you lit a candle. I distinctly remember asking what the candles were for and why there was a basket with small change in it.

I also recall one time attempts to carry me in my wheelchair up the steps of the side entrance. That meant I had to be at least five years old because that is when I got my first wheelchair. Why did we attend St. Bridget’s when St. Christopher was much closer? St. Bridget’s held the distinction of having the latest start time of any Catholic Mass anywhere in Indianapolis at 12:10 PM each Sunday. I never understood why 12:10 and not perhaps high noon. I’m not certain, but I think I was baptized at St.Bridget’s Church.

St. Bridget’s Church was closed by the archdiocese in 1994 citing financial difficulties, a decaying structure, and high crime in the neighborhood. The building was briefly used as a Newman Center for IUPUI but was torn down in 2000. A new apartment complex now sits on the site.

One of my earliest memories of being Catholic revolved around a conversation I had with a neighbor boy. I’m guessing I was about four years old and it was shortly after we had moved into the neighborhood. My parents and his parents had gotten together for some sort of gathering on a Saturday night and we were playing in his bedroom. I mentioned that I had to go to church the next day. He asked why.

“Because we are Catholic”, I explained.

“We go to church sometimes. What is Catholic?” he inquired.

“I don’t know exactly. I just know we have to go to church EVERY Sunday.”

He deduced, “Well, I guess I’m not Catholic then.”

As I reached school age and as it became too difficult to carry me up the steps in a wheelchair, my mother and I began attending our home parish, St. Christopher’s Church. They operate an elementary school and my mom attempted to enroll me there. Although she carried some emotional baggage from her 12 years of Catholic education, she remained committed to Catholic schools. She had been indoctrinated to believe that in order to be a “good Catholic” you had to send your kids to Catholic school no matter the financial burden.

When she approached the priest about enrolling me, he politely said that they were not in any way capable of dealing with my special needs. It wasn’t quite the confrontational scene we talked about last week from the movie Mask in which Cher portrayed the mother of a son with a disfiguring medical condition. In this particular case, the priest was correct that the school was not equipped to handle a student like me. It was just the sad truth.

When my mother inquired, “How is he going to learn religion in a public school?”

The priest replied, “Religion is taught in the home.”

She didn’t accept that answer even though he kept repeating it over and over again. Eventually, she persuaded him to give me private one-on-one instructions in what Catholics refer to as “CCD classes”. More on the phrase CCD later.

Years later, her commitment to Catholic schools evaporated. She grew to see the school as a drain on the parish’s resources and a financial burden on families who could not afford it. While she respected parents who chose to send their children to private Catholic schools if they could afford it, she often wondered if we were a church supporting a school or a school with a church attached.

I don’t know which of the three priests at St. Christopher’s Parish mom argued with over my education. But the task of giving me religious instruction fell to the youngest of the three, Father Paul Rehart. Once a week, mom would take me to the rectory (the house where the priests reside) and I would sit in his office and get religious education one-on-one.

First-graders curriculum for Catholic education was from a little blue book known as the Baltimore Catechism. A Catholic organization known as the Confraternity of Christian Doctrine a.k.a. CCD based in Baltimore, MD was responsible for creating the book and educational materials in the form of worksheets that would go with the catechism.

A major part of the indoctrination was that you had to memorize the exact answers to a series of numbered questions. The teacher, in my case the priest, would ask the question and you had to recite the answer 100% verbatim. I still recall the first four questions. I promise you I did not need to refresh my recollection several years ago when I purchased a copy of the Baltimore Catechism on eBay. These questions were burned into my brain.

Question 1: Who made you?

Answer: God made me.

Question 2: Who is God?

Answer: God is the Supreme Being who made all things.

Question 3: Why did God make you?

Answer: God made me to show forth his goodness and to share with us His everlasting life.

Question 4: What must we do to share in His everlasting life?

Answer: To share in God’s everlasting life we must know him, love him, and serve him.

Those questions bring to mind one of my favorite Catholic jokes.

A young nun was teaching first-grade kids from the Baltimore Catechism. Each day she would ask questions in order. Unfortunately, she always started with the kid in the front row and went from child to child in the same order every day. The kids soon realized they only had to memorize one question each. One day, the boy in the front row was absent. She asked the next child, “Who made you?” The child couldn’t answer. She asks the next, and the next, and none of them could answer the first question. She became highly agitated. She thought they had been doing so well. Finally, a little boy in the back of the room raised his hand. With great enthusiasm, she called on him. He explained, “Sister…The little boy that God made isn’t here today.”

Years later, when I began teaching the Catholic faith to adult converts, I began to have a deeper appreciation of the brilliant wisdom and deep theology contained in those first four questions from the Baltimore Catechism. I was reminded of the book titled, “Everything I Needed to Know I Learned in Kindergarten”. I concluded that everything I needed to know about Catholic theology was summarized in those first four questions of the Baltimore Catechism.

It gives us the essentials of who is God and what our relationship is with him. In some respects, it explains the meaning of life. The purpose of our creation was to spend eternity in paradise with God. And it gives us a complete outline of everything we need to fulfill that goal

It begins with knowledge. We must acquire a deep understanding of God, his message, his role in our lives, his plan for the building of the Kingdom, his unconditional love, and the forgiveness of our sins that is there for the asking.

Having a deep knowledge of God, the obvious result is that we will come to love God.

Knowing what we do about God and having a love for him as a response to his love for us, the natural consequence is that we will attempt to do His Will by serving him. For the most part that service is to our fellow human beings who are also Children of God as are we.

While our Protestant friends were memorizing Bible verses, we were cutting through all of the confusing symbolism in Scripture and getting straight to the heavy-duty theology without having to argue over whether or not God actually created the earth in 6 days of 24 hours each and what was so sinful about eating an apple. It didn’t matter how long it took God to create us and everything else. It didn’t matter how He did it. We are God’s children, part of his master plan, and our destiny was eternal life in heaven.

It’s brilliant in simplicity yet it is so deep, one can easily spend a lifetime coming to understand all of the ramifications of those first four questions.

Naturally, I like most Catholic children, thought the whole idea of memorizing answers to questions was a ridiculous waste of time. Yet I still remember those questions decades later. It took me a long time to appreciate what it all really meant.

As a student in those one-on-one sessions, I was probably a royal pain in the ass. I had lots of questions of my own. The church portrayed itself as the absolute authority with the answers to every question. So, often I would sling some pretty tough ones at the poor unsuspecting young priest.

I swear to God… These are things I really asked the priest at about age 6 or 7.

I was taught that we had a serious obligation to attend Mass every Sunday. To miss Mass without a good reason was a serious sin. So I posed the following hypothetical…

I’m on a cruise ship in the Pacific Ocean and it’s Sunday. There is a priest on board and he has scheduled Mass in the ship’s chapel. I’m on my way there ready and willing to fulfill my solemn Sunday obligation. Suddenly the captain comes on the PA and announces, “Congratulations everyone. We have just crossed the International Date Line. It is no longer Sunday. It’s suddenly Monday.” Before I can persuade the captain to turn the ship around and take us back to Sunday to save our mortal souls, the ship hit an iceberg as the Titanic did. The ship sinks and we all die with this horrible sin on our souls. Would we go to hell?

I was a real shit, wasn’t I?

But wait… there is more. Riddle me this Batman!

They said that when the priest says the words, “This is my body” the ordinary bread on the altar magically turns into the Body of Christ. Similarly, when the priest says “This is my blood” the wine in the cup magically becomes the Blood of Christ. Anyone who receives the Body and Blood unworthily or who is non-Catholic commits a terrible sin.

So, a priest walks into a bakery and is standing next to a huge case of freshly baked loaves of bread. Someone walks by not watching where they are going and bumps into him violently. Without thinking, the priest says, “Hey… watch where you’re going. This is my body.”

Or similarly, a priest walks into a liquor store to pick up a bottle of wine. As he takes it from the shelf, someone else bumps into him, he drops the bottle and it breaks. As he is picking up the pieces of broken glass, he cuts his finger and wipes it on his shirt. The store clerk comes with a bucket and a mop to clean up the mess. He notices a red stain on the priest’s clothing and asks, “Did you get wine on your shirt?” To which the priest answers, “No. This is my blood.”

Does every piece of baked good in the bakery become the Body of Christ including doughnuts or does the bread alone become the Body? And similarly, do all the alcoholic beverages in the liquor store become the Sacred Blood or only the wine? What is the radius of influence of the words of consecration?

Inquiring minds want to know. I wasn’t satisfied with the answers the priest gave me. I think in the case of the sinking ship he said it was just so unlikely to happen that God would understand. In the case of accidental consecration at the bakery and the liquor store, he just said, “Priests have to be careful what they say.”

It was now time to prepare me for the Sacraments. At about age 6, Catholic children receive their First Holy Communion. Boys dress up in suits and ties. Girls wear fancy white dresses and lace veils. All of your Catholic relatives turnout and a few of your non-Catholic relatives might show also. They make a pretty big deal out of it.

Prior to First Communion, you have to do First Confession. In the six years since your Baptism, you might have committed some sins that you need to confess so that you are worthy to receive Communion.

In the early 1960s, it was still the practice that confession took place in a confessional booth. Unfortunately, those facilities were not wheelchair accessible. So I had to do my confession in some private space face-to-face with the priest. We had a small enclosed area in the back corner of the church called “the cry room.” It had glass windows in the front and a small speaker from the PA system. Parents would take crying babies and unruly toddlers into that room. For me, it was the confessional. I would meet with the priest either before or after Mass and he would hear my confession there.

It wasn’t until the reforms of Vatican II that it became normal for everyone to use a Reconciliation Chapel and do Confession face-to-face. So, I was ahead of my time. Eventually, that cry room became the official Reconciliation Chapel for everyone to use although we still retained a slightly remodeled confessional booth as an option.

The Second Vatican Council, a.k.a. Vatican II was a meeting called by Pope John XXIII that lasted from 1961 through 1965. All of the bishops of the world were called together for a series of four sessions in which they produced documents intended to help make the church more relevant in the 20th century and beyond. Among the obvious reforms which came out of that Council was that the celebration of the Catholic Mass would no longer be in Latin. It would be the language of wherever you resided.

They also made changes to some of the rules of discipline. For example, it was a practice that Catholics were supposed to abstain from eating meat on Friday. The theory behind it, which nobody understood as it was never taught, was that you were supposed to take the money that you saved by not eating meat and give it to the poor. So, if rather than having a 15-cent hamburger, you went out and ate a big fancy expensive lobster dinner, you had fulfilled the letter of the law but had missed the point. As I said, that reasoning wasn’t taught. All we were taught was, “It’s a rule and if you don’t follow it, it’s a sin.” Another aspect of the practice was that it was practicing self-discipline.

Similarly stricter rules about fasting during the season of Lent were also about denying oneself little things so as to have the spiritual strength to deny temptation in more important things.

Throughout the 1960s as the Vatican II reforms were promulgated, the rules kept changing. I didn’t have to abstain from meat until I was seven because young children were exempt. Then about the time I was eight or nine, they changed it to 14 so I was able to eat meat on Friday again. By the time I turned 14, they got rid of the rule altogether except during Lent.

Before they changed the rules, the requirement to abstain from meat on Fridays was a source of great consternation for my mother. Because I attended public school, she couldn’t guarantee that they wouldn’t serve me meet for lunch on Fridays. She had a long conversation with the priest in which he convinced her it was okay. She and the other Catholic moms at the public special education school traded notes on how to have that conversation with their pastor.

My only memory of violating the rule was on my eighth birthday. Mom was in the hospital dealing with maternity issues. Grandma Young, from my non-Catholic side of the family, was taking care of me and fixed me a hot dog for lunch. Perhaps I will burn in hell.

Legend has it that during Vatican II when they decided to relax the rules regarding abstaining from meat on Friday someone asked, “What then of all of the souls burning in hell for eating meat on Friday?” The reply was, “Just because we sentenced them to eternal damnation doesn’t mean that God actually carried out the sentence.” So, maybe I’ve still got a chance. I’m pretty sure I brought it up at my next confession.

In our next episode, I will continue to discuss the reformer of Vatican II and the effect it had on me and my struggles to accept the teachings of the Church.

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

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

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

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Transcript

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

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

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

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

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

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

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

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

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

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

That is normally it isn’t dangerous or malicious.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I agreed yes.

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

Again I agreed.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As always, I welcome your comments.

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