Author’s Journal: Hooray! My First Rejection!

I’m celebrating today. I got my first rejection letter!

I’ve not had a lot of things published but I have published a few. I’ve been talking about them in this series of blog posts that I’m calling “Author’s Journal”. I’ve got more articles to write in this series about things that have gotten published. And then something happened today and I simply realized it had NEVER happened before.

I got a rejection letter. (Actually it was an email.)

Anyone who has ever tried to sell their written works probably has enough of these to wallpaper their entire house and then some. Every bit of advice I’ve ever heard about writing is that getting rejected is something that’s going to happen a lot. I ran into a guy on Facebook who had written some sci-fi stories and he got 50 rejections before he had his first sale. But for some bizarre reason (and certainly not because I’m such a brilliant writer) until today I’ve never been rejected. I never thought about the fact before. I never realized how extraordinary it was.

Let’s take a quick review of the things I’ve published. In a previous blog post I talked about 2 technical articles I wrote for an obscure computer magazine called “Microsystems”. They were a couple of little file conversion utilities that I had written for computer disk systems that no longer exists. If there had been the Internet back in those days it would’ve been a couple of simple blog posts and maybe a dozen people might have stumbled onto it if they had done the right Google search. But because these niche magazines in the early days of personal computing were so anxious for content, they agreed to publish my first article and a few weeks later I submitted part two and they brought it as well. They even republished the magazine articles into a book that was sort of a “best of” collection even though the title didn’t say that. Read my blog below about how inappropriate it was for my articles to be in that compilation and the story behind the story.

Author’s Journal: My First Print Publication

The second thing I had published was my autobiographical article “The Reunion” which was published in the September 1987 issue of Indianapolis Monthly Magazine. It was a memoir of me growing up attending a special education school called James E. Roberts IPS School #97. They had a reunion at the school that I attended to celebrate that it was closing and all the special ed kids were being mainstreamed into regular education. The visit to the old school brought back lots of memories and I chronicled them in that article. While “Microsystems” was anxious to publish my technical article, Indianapolis Monthly very nearly rejected my story. You can read the story behind the story of “The Reunion” in this post from Author’s Journal which also includes links to an online version of the original magazine article.

Author’s Journal: My Award-Winning Article “The Reunion”

My next published work was a book that I contributed to called “Ray Tracing Creations” about ray trace computer graphic rendering. I was part of a team of volunteer programmers who built an open source rendering engine called POV-Ray. The team leader, a guy named Drew Wells, got the contract to write a book about our program. He got tied up in his personal life and only wrote about five chapters and couldn’t finish it. Because I was the next most experienced and knowledgeable person on the team, they reached out to me and I wrote the rest of the book. A short time later we did a second edition rewrite and I got top billing over Drew. It’s not like I wrote something on my own on spec, submitted to a publisher, and waited for a reply. So in this case there really wasn’t a chance of a rejection letter unless what I wrote was just so awful that they decided to scrap the entire existing project. I’ve not yet chronicled the story behind that story. Look for it in upcoming blog posts.

I also had a second magazine article published in Indianapolis Monthly about my first time attending the Indy 500. Although I had been a lifelong race fan and been to practice and qualifying countless times my entire life, I had not yet attended the race itself because prior to that there wasn’t a good place to sit in a wheelchair. The story behind that story will be featured in a future Author’s Journal. While this story could have been rejected, they already knew me and liked my work. This story about my first 500 wasn’t as emotional or moving as “The Reunion” but it was good enough.

Since then I’ve been doing technical writing for the Adafruit Learning System in which I talked about various maker projects I have created most of them involving assistive technology for the disabled. The folks at Adafruit were familiar with my projects because I would show them off on their weekly video show and tell chat room. They had also seen some of my technical blogs and they were happy to publish my articles. Initially I was paid in free merchandise but more recently have been paid monetarily. Again this was a situation where they knew my work, they were anxious to have it, and the chance of getting completely rejected was relatively small. Click here for a list of my technical articles on the Adafruit Learning System.

Some of my best writing has been in my personal blogs but of course I’m the publisher. I’m not going to reject my own work 🙂

This entire Author’s Journal is being written because last summer I decided to try my hand at writing fiction specifically science fiction. I’ve written a novella that was initially 24,500 words long. The problem is the major sci-fi magazines like their novellas in the neighborhood of 20,000-22,000 words long. I worked hard to get it down to 22,000 but that still is going to limit my market.

While I was working on that, I had a dream and when I woke up from it I had the idea for a short story. A very short story. Just 300 words. That’s too short. Some of the sci-fi magazines publish extremely short things under the category of “Poetry” and although it wasn’t necessarily written in verse and did not rhyme, it did have a sort of lyrical poetic nature to it. Maybe it was free verse. Maybe it was a very very short story. I didn’t know.

I was so excited that I had been inspired to write this clever little short piece and had not planned on writing that I did way too little research on where I should submit it.

The obvious choice was the “Magazine of Fantasy & Science Fiction“. It was a little bit surrealistic and so it was more fantasy than sci-fi. Unfortunately at the time they were in the process of changing editors and had closed the magazine to new submissions until they published their backlog of purchase stories and sets of new editorial goals under the new leadership. My favorite of the top sci-fi magazines is “Analog Science Fiction – Science Fact Magazine” but they mostly publish what we might call hard science (technology, spaceships, computers etc.) That left “Isaac Asimov’s Science Fiction Magazine” as the remaining one of what I would describe as “The Big Three”.

The story took me less than a half hour to write. I spent less than an hour deciding Asimov would be my first choice. I uploaded it with a note saying “I don’t know if this is poetry or a very short story but I thought I would submit it anyway.”

They say wait five weeks for an answer. I was also supposed to get an email acknowledging the submission which I never got. But when I would go to the submission website and type in my receipt number it said that my story had been received.

Shortly after submitting it, I discovered there was an entire category called “Flash Fiction“. It consists of extremely, extremely short stories never longer than 1500 words. Unknowingly I had written flash fiction which Asimov typically doesn’t publish. It turns out that Analog does publish flash fiction occasionally. They had one in their November/December 2020 issue. But again this wasn’t sufficiently hard science Analog-like.

I did find an online webzine that pays professional rates of about eight cents per word. It’s called “Daily Science Fiction“. They publish a new story every day that comes to you free by email or you can go to their website. Everything there is flash fiction under 1500 words and preferably under 1000 words. Perfect for what I had written. They publish all sorts of speculative fiction including sci-fi, fantasy, and another category I had never heard of cald slipstream. Apparently slipstream is sort of a bizarre otherworldly kind of writing that is not mainstream but slipstream. Maybe that’s what I wrote.

Realizing how inappropriate my choice of Asimov was, I was a bit anxious to get rejected so that I could submit it somewhere else. It is strictly forbidden to submit the same item to multiple publishers at once. If they catch you, you could easily get blacklisted. Maybe not from the whole industry but certainly ruin your chances with the publications involved.

When the five-week waiting period was up, I still had not heard back anything from Asimov’s. They said if you don’t hear anything after five weeks that you can email them so I did.

Again I explained that I didn’t know if what I had written was poetry or perhaps flash fiction… Probably the latter. But they said if you don’t hear anything in five weeks I can email you so here I am asking what’s my status. Then I added a paragraph… It said something like “By the way I’ve got this novella. Your guidelines say that you ‘Rarely publish anything over 20,000 words.’ I’m working on a novella that I’ve managed to trim down to 22,000 words. I suppose if I was an established author you might stretch your limits but has a guy like me who is unpublished got a chance with a 22,000 word story?”

I fully expected them to write back saying “The rules are the rules. Go away kid… You’re bugging me with this 22,000 word crap.” Much to my surprise I got a very nicely worded email explaining that poetry goes to a different editorial process and can take up to two months. And that my novella wasn’t extensively over the limit and they suggested I go ahead and submit it. They said if we like it and it’s too long we will help you cut it.

I had been through that before. “The Reunion” was too long and the editor there gave me another chance to trim it and then she trimmed some more and put back in some things I took out. So it was a bit of dĂ©jĂ  vu.

I still had some final edits to do on my novella but my plan was to submit it at 22,000 words and see what happens. A friend of mine is doing some final proofreading for me and I should be ready to submit it very soon.

Meanwhile today Asimov finally rejected my flash fiction. I was so happy. Now I can send it somewhere more appropriate and have a better shot at it. I have submitted it to Daily Science Fiction. They say that they try to respond quickly but if you haven’t heard anything in four weeks you can contact them. There is a place where you can look up the status of your submission online. So now we wait and see. Maybe I will get another rejection which is okay.

Also over the weekend I finished the first draft of a sequel to my as yet un-submitted novella. This one has come in at 16,000 words so I won’t have to do any major surgery on it to get it within the standard writers guidelines.

I will keep you posted as the story develops and I will be working on more installments of Author’s Journal telling the stories behind the stories of what I have published.

RIP CompuServe Forums– Service Ending December 15, 2017

To many of you reading this, the headline of this article will cause you to stay “Duh.. What is that?” However those who do not know what a CompuServe Forum is, you are unaware that much of your online experience from message boards to live chat rooms to booking airline tickets and reading the latest news all had its origins in the CompuServe Information Service.

Beginning in the late 1970s before the Internet and before AOL there was an online service called CompuServe. It was owned by H&R Block as a way to generate revenue for unused time on computers. CompuServe was sold to AOL in 1998 and as the Internet grew, both CompuServe and AOL faded into the background.

It cost $5 per hour to use CompuServe but there was nothing else like it at the time. I began using it in 1981 and got involved in a forum called “NIPSIG”. In those days didn’t call them “formes” or “message boards”. They were called “SIGs” or Special Interest Groups. NIPSIG stood for “National Information Providers Special interest Group”. It was a gathering place for writers, journalists and other articulate educated people who discussed politics, religion, and all sorts of interesting issues. It was later renamed “Issues Forum”. My particular area of interest was a section for Disability Issues.

The forum administrators in those days were known as “sysops” or System Operators. The sysop of the Issues Forum was an amazing woman named George Griffith. Her day job was transcribing music into braille for the Library of Congress. I learned shortly after I met online that she was totally blind. However it wasn’t until after I had known her for many months that I also learned she was deaf as well. It was a great shock to me.

I had experienced the fact that online people were unaware that I was in a wheelchair and had been so for my entire life. I discovered what a great equalizer the online experience could provide for someone with a disability. People got to me for who I was, and what I believed and thought rather than how I looked physically.

Georgia gave me the opportunity to be sysop for the disability section which earned me a coveted “free flag”. It meant that I could access CompuServe without paying the $5 per hour cost in exchange for my work there is a discussion leader.

A few years later I moved over to another CompuServe Forum called HSX Forum or more formally “Human Sexuality Support Groups” where I was sysop of a section about the sexuality of disabled people. HSX was the brainchild sexuality authors Howard and Martha Lewis. That forum also included discussion groups LGBT issues, fetishes, survivors of abuse, and a variety of other topics related to human sexuality. It was a unique safe place for people to have serious online discussions about such issues.

Eventually I migrated to the “Graphics Forum” where software developers exchanged code and ideas on a newly emerging format for storing graphic information. CompuServe developed this format called the Graphics Information Format or “.GIF”. To this day people debate on whether it is to be announced “gif” or “Jif” with a hard G or soft G. But we didn’t care how you pronounce it. We were just trying to develop software to decode it. The original standard was published 1987 but the real excitement came in 1989 the advance standard allowed for overlapped sub images. These are the foundation of GIF animations that we see today.

Although I cannot prove it, I am certain I was responsible for creating the worlds first pornographic animated GIF ever developed. I took a GIF of a nude woman using a paint program and some other multi-image GIF encoding software that I developed and I painted on a bikini. Then I animated it so that the bikini dissolved.

One of the subsections the Graphics Forum was devoted to creating an open source graphics rendering program called the Persistence of Vision Ray Tracer or POV-Ray. Eventually that project spun off into its own forum where software developers from around the world collaborated to create a remarkable photorealistic rendering engine that is still in use today decades later.

CompuServe Forums were also maintained by major software development to provide technical support for their products. And if the manufacturer’s themselves did not provide such support, community knowledgeable users were always available to assist you tips and tricks and advice.

Friendships which were forged in the CompuServe Forums in the 1980s have lasted to this day. However today we stay in touch by email and Facebook. I hate to admit that I’ve not logged into a CompuServe Forum in 15 years. So the closing of these forums will not leave a hole in my life yet their passing is still bittersweet. To me it’s sort of like your favorite fast food hangout that you visited in high school is closing down even though you haven’t been back in years. You still hate to see it pass away.

This is only a fraction pioneering features that were offered by CompuServe years before the Internet was invented and probably years before many of you were born.

— Chris Young a.k.a. cyborg5 a.k.a. 70136,62

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Click here for article from Engadget about the CompuServe Forum closing

Top 10 News Stories in My Life for 2016

In this time of year all the news organizations are recapping the top 10 stories of 2016. I like to take this opportunity to recap the top 10 stories of my life. In any other year items like getting sued in federal district court for copyright infringement would be the number one item but not in this very busy and eventful year. It comes in further down the list. Actually in any other year any of the top four or even five of these stories could have been number one .

So here are the top 10 news stories in my life counting down from 10 to number one.

10. Major new connections on Facebook

From time to time I do Google searches or Facebook searches for long lost friends. 2016 yielded three major finds that I had been seeking for a long time. My old college buddy Frank Williams who is still playing keyboards in bars and nightclubs just like he was when I knew him 40 years ago at IUPUI. We haven’t gotten together in person yet but we’ve exchanged emails and follow each other on Facebook. Ellie Vinci also from my college days was the first girl who wasn’t in a wheelchair that I ever took on a date. Among other things we did back in the day was see Jaws, and go to a hockey game. She taught me an appreciation for violence on ice. My friendship with taught me the value of a strong nonromantic friendship with a female and became the foundation for many other similar relationships throughout my life. And finally Cheryl Fayette, my date for the senior prom and the first girl I ever kissed. Sadly my reconnection with her on Facebook was postmortem.

RIP: My First Kiss

 

9. Release My First Non-CGI Christmas Card

After making Ray Traced CGI Christmas cards using POV-Ray every year since 1995, this year I created a Christmas card that was a photograph of 3D printed statues re-creating a look of my 1995 CGI rendered card. This was a major accomplishment to get the POV-Ray models converted to something that could be 3D printed. It was the culmination of 18 months of work since I first got my 3D printer in the summer of 2015.

My 2016 Christmas Card: Reimagining a CGI image by photographing 3D printed models

 

8. Released IRLib2 Software Library

Several years ago I developed a library of software for Arduino based microcontrollers that sends, receives, and decodes infrared signals such as those used in TV remotes. In 2016 I did a major rewrite to version 2 that took me many months to complete. The new software is much more flexible, expandable, and includes a new 117 page user’s manual. Released as open source for the world to use 100% free. I cannot begin to count the hours I spent on this project in 2015 and 2016.

Announcing the Release of IRLib2

 

7. Built The Ultimate Remote

Somewhat related to item 9 but actually a separate development project I built a new ultimate remote control that not only controls every TV and cable box in the house but uses Bluetooth connection to my new iPhone 6 that allows me to use iOS accessibility switch control features to have full control of the iPhone without using the touchscreen. Both the IR portion and the Bluetooth switch control of the iPhone by using three micro switches that I hold in my right hand. This is the latest in a long series of adaptive technologies I built using Arduino based microcontrollers and represents the most powerful device I’ve ever built in this category. This device was an essential part of my ability to communicate with doctors and nurses during my December 2016 hospital stay.

The Ultimate Remote Control and Why I Built It

 

6. Revolving Door of Home Health Aides

After my friend Rick Ruiz had to quit as my home health aide in November 2015 I’ve spent more than half of the time since then without a home health aide and when I did have them they did not last very long. We’ve had approximately 15 different people. Our longtime agency Acme Home Care could no longer supply a person and we moved to a new agency First Horizon where we are getting much better service. This is been a real strain on dad having to spend so much time taking care of me. However we have recently expanded from six days per week to a full 7 days per week.

 

5. Returned to Teaching RCIA

After teaching RCIA for more than 30 years I had retired because the program had been taken over by St. Michael’s parish. However when the RCIA program returned to St. Gabriel I decided to come out of retirement and teach again. I taught three lessons at the beginning of the year and it was wonderful to return to my most treasured ministry. I’m not sure if I will teach next year but it was good to be back one more time.

 

4. Sued for Copyright Infringement in Federal Court

Was threatened with a lawsuit for the use of a photo of the Indianapolis skyline as the background of my 2013 Christmas Card. Retained a lawyer but negotiations failed and the suit was ultimately filed in June of this year. After spending thousands of dollars in lawyers fees it was finally settled out of court. The details of the case yet to be blogged.

 

3.Stopped Eating and got a G-tube Placed

As my spinal muscular atrophy has progressed my ability to swallow has been severely compromised. I made the decision to stop eating altogether because it was becoming way too difficult. I had a surgical G-tube inserted in my stomach in May of this year. The procedure was supposed to be done outpatient however I was hospitalized for a UTI few days prior to the scheduled procedure so we did it while I was still an inpatient. I still eat occasional soft foods such as ice cream and cake for birthday parties and pumpkin pie for Thanksgiving. I continued to drink Coke and take most of my medications orally although that may be changing soon.

Tough to Swallow

 

2. New Wheelchair Finally Arrives

This April my new reclining power wheelchair with a mouth control joystick finally arrived after a nearly year-long process of evaluating equipment, going through paperwork, having an evaluation from a physical therapist and doctors. Even after the chair arrived we had much difficulty getting me able to operate it and had to build a new joystick mount using my 3D printer. Software glitches and mechanical problems also delayed my initial use of the wheelchair but since then it has operated well and I regained much of the independence I lost in late 2015 when I could no longer drive my old wheelchair.

My New Wheelchair Finally Arrives

 

1. While Hospitalized for Most of December with Tracheostomy Learned of New Treatment for SMA approved by FDA

A simple viral head cold led to a call to 911, an ambulance trip to St. Vincent ER, a tracheostomy and a lengthy wait in Seton Specialty Hospital to get a new in-home ventilator approved. This is the longest continuous hospitalization of my life. The adventure of not being able to communicate while intubated or on the ventilator led to a emotional roller coaster experience that has inspired me to write what may become my next published work after beginning with an extensive blog version. While recuperating in the hospital and waiting on the vent approval learned that the FDA has approved the new drug treatment for Spinal Muscular Atrophy. While primarily aimed at infant Type I patients it has also been approved for use by my Type II children and adults. Although I will not likely benefit from the treatment it is an encouraging sign that others may not have to endure much of what I have lived through for 61 years. The entire hospital experience also illustrated the depth of support and friendship that I have in the maker community which has gone way beyond what I ever expected. This entire month of December could easily be described as the top story of the past decade of my life. The full ramifications of which are not yet known. Extensive blog coverage of these events is still being written.

Pray That They Listen to the Man with No Voice

 

Well that’s it folks. The top 10 news items in the life of Chris Young for 2016. Let’s hope 2017 is a little more calm but just as interesting 🙂

I’ve Got That One. It’s called SMA Type II. And now it finally matters!

Note: To those of you who have heard this story before, please keep reading to the end. There is a new ending and I don’t want to give it away. Please keep reading.

Approximately 40 years ago I applied for a job as a computer programmer at the Indiana University Department of Medical Genetics which in those days was housed in the research wing of Riley Hospital for Children. My mentor and computer professor Dr. John Gersting was a consultant to the project and helped me secure the job despite his insistence that he would not help and I had to earn it on my own. He attended the job interview which was conducted by the department chairman Dr. Donald Merritt MD, PhD.

To put it mildly, Dr. Merritt was an asshole. Somewhere during the course of the interview Merritt and my mentor Gersting exchange some snarky joke with one another and Merritt flipped the bird at Gersting. Dr. Gersting looked at him as if to say “Why the fuck would you behave in such a childish manner in front of one of my pet students? Are you really so inarticulate that you have to stoop to flipping me off in front of him?” But in fact he said nothing. He didn’t need to.

At one point during the job interview Dr. Merritt asked me “What’s your diagnosis?”

I didn’t understand. I thought he wanted me to diagnose something. He rephrased the question “With what were you diagnosed? What you got? Why are you in the wheelchair?”

“Oh now I understand” I replied. “It’s some kind of muscular dystrophy or genetic neuromuscular disease. As you well know there are a dozen or so different varieties. I’ve never bothered to figure out which one I have. It’s not Duchenne muscular dystrophy obviously. There is genetic history in my family. The people here at Riley described it as ‘amytonia congenita’ but that’s not really a diagnosis it’s more description of my symptoms.” That particular Latin phrase means congenital (since birth) low muscle tone. I always said it was like they took me into the doctors and said “hey this kid has had weak muscles since birth” and the doctor said “We’ve got a name for that… amytonia congenita” and we said “What’s that mean?” and they said “it’s Latin for this kid has had weak muscles since birth”. It sounds so much more formal in Latin it doesn’t it?

“But don’t you want to know?” He inquired.

“Well Doc… When you can tell me which of those dozen or so types of muscular dystrophy you can do anything to help… Then I’ll worry about whether or not I’ve got that one.”

He raised his eyebrows as if to say “okay you got me there.” He went on to explain there were other reasons one might want to know one’s diagnosis. If I have siblings they might want to know if they were at risk to bear children with my disability etc. I told him we would deal with that at the proper time.

He went on to explain very matter of fact that his true purpose was to see if I was comfortable discussing my own disability. He had experienced people who were shy about discussing such issues and considering the way I threw it back in his face I had alleviated any concerns about my shyness or timidity on the topic. The interview went on and I got the job. I worked there for two years until my disability brought on congestive heart failure and other issues that made it no longer possible for me to work a full-time job.

Approximately 25 years later while doing some Google searches about medical conditions for a friend, I decided to look up “amytonia congenita”. Among the websites found were my own blog where I explained my connection to the phrase. Another was a quote from a book jacket on amazon.com for an autobiography titled “The Me in the Mirror” by Connie Panzarino. It said that the author had “Spinal Muscular Atrophy Type II, formerly known as amytonia congenita”. That peaked my interest. Whatever the hell “Spinal Muscular Atrophy Type II” was… It sounded much more like a real diagnosis than a symptom description like amytonia congenita.

I continued searching about Spinal Muscular Atrophy or SMA as it was abbreviated and as I read the descriptions of patients many in their own words, it sounded as though they could’ve been my twins. The course of their disease sounded identical to my own experiences.

One of the things that had made me reluctant to determine what type of muscular dystrophy I had was that the diagnosis process generally involves things like electrical stimulations of muscles and muscle biopsies neither of which sounded very pleasant simply to answer a question that yielded no useful answers. However SMA was known to be caused by a missing chunk of DNA in my number 5 chromosome. Specifically it is missing from a gene known as the SMN1 gene. Genes are strands of DNA which create specific proteins. They are divided into coded sections called axions and non-coded sections called interons. The seventh axion of the SMN1 is missing in patients with SMA. It’s like you cut the tape and spliced it back together again. All they had to do was take a DNA sample in the form of a blood sample. They would send it off to a lab and sequence that gene and see if than chunk was missing.

Everyone has two copies of each chromosome with one coming from their mother and the other from their father. If you have a missing chunk from one parent but not the other you are a carrier but do not exhibit the disease. If both parents give you DNA with a missing chunk (a 1 out of 4 chance) then you hit the DNA lottery and end up with SMA like me. Whoops… Spoilers… The DNA test came back saying indeed I did have a missing 7 axion from both copies of my 5 chromosome.

Where did I go to get the test done? I went back to the Indiana University Department of Medical Genetics where I had worked as a computer programmer 25 years earlier. Dr. Merritt had died of skin cancer shortly after that job interview. After I left the department it moved to new buildings at the IU Medical Center. But some of the people who were there when I was were still working there and they had a vague recollections of the guy in the wheelchair who worked on the “Mega-dats” computer database all those years ago.

One thing that did not change over those 25 years. There still wasn’t anything they could do for it. But it was fascinating to know they really did know what was wrong with me. In the years since my diagnosis I have followed the course of the research. For example they have developed a strain of lab rats that have the disease which is useful. They’ve come up with a variety of strategies for possibly treating the disease.

I mentioned that the problem is a missing chunk from SMN1 gene which encodes something called the SMN protein the lack of which causes my disease. I can go into more detail on how it works but that’s unimportant for the current discussion. Everyone, whether they have SMA or not also has in their 5 chromosome something called the SMN2 gene sometimes called a backup gene that should kick in if there’s something wrong with SMN1. The problem is everyone’s SMN2 gene has a glitch of its own. Just one base pair in the strand of DNA (I forget whether it’s a AG or a CT that is swapped) is wrong. Think of it as a one bit data error in a strand of data thousands of bits long. That one bit error means that the SMN2 gene only creates the proper protein about 20% of the time. The other 80% create some worthless molecule that does nothing useful.

One of the strategies has been to get SMN2 to turn itself on five times more than usual. That way when it only works 20% of the time you get 5Ă—20% equals 100% of what’s needed. The other strategy is to introduce a drug that increases that percentage so that it works more often. It doesn’t correct the bad bit of data but it causes the protein to get properly manufactured despite the flipped bit. That strategy is one employeed by a drug known as “Spinraza”. But more on that later…

I said that I have SMA Type II. In my particular case I never walked as an infant and the disease has progressed relatively slowly throughout my 61+ years on the planet. A more severe and more common version is SMA Type I in which infants are born severely weakened and rarely survive more than a few months. It is the number one genetic killer of any disease known. There is also an SMA Type III which has a later onset than mine and therefore consequently less severe. The goal of course of most treatment strategies is to try to get those Type I babies to survive more than a few months. A successful treatment is easy to measure because they wouldn’t die. Measuring success in Type II or III is more difficult because the disease progresses more slowly.

Okay… I can’t stand it anymore.

I have buried the lead of the story as deep as I can.

Today, December 23, 2016, the FDA has approved the use of the drug Spinraza for the treatment of Spinal Muscular Atrophy Type I, II and III. In clinical trials with a double-blind study of 121 patients with SMA Type I, results showed that 40% of the patients receiving the drug showed measurable efficacy measured by a variety of standards including extended survival while those receiving a placebo had no benefit. The drug is so effective that all participants are now receiving the actual drug. It is been fast tracked and approved for all types of SMA including mine.

The treatment involves injection into the spinal fluid. I’m not sure how often such injections are required. If you can do it on their program they will cover the cost of the drug. This is also hot off the press there isn’t much information available right now.

Obviously for someone like me who has endured the effects of the disease for 61 years even if this was an all-out cure (and no one is calling it that… They are calling it a treatment) nothing is going to reverse the orthopedic effects of contracted joints, severe scoliosis, muscle deterioration, nerve damage etc. that can come with the course the disease throughout my life. I’ve always known that as I followed the research. To the parents of those Type I babies however it’s the miracle they’ve all been praying for.

But finally Dr. Merritt, wherever you are, they can do something about one of those types of muscular dystrophy. And guess what… It’s the one I got!

And I discovered the news by a Facebook post from CureSMA.org while sitting alone in room 207 of St. Vincent Seton Specialty Hospital two days before Christmas while waiting on bureaucracy to get me a ventilator so I can go home.

Here are two articles with details on the above story.

FDA Approves Spinraza for SMA

FDA approves first drug for spinal muscular atrophy

RIP: My First Kiss

When Erich Segal wrote his 1970 novel “Love Story” the first line read “What can you say about a twenty-five-year-old who died?” He then proceeded to tell a classic American boy meets girl love story. One could not accuse him of the proverbial “burying the lead” in the story. Nevertheless despite the fact that the book and the movie both began with that sentence, many people were surprised when near the end of the story the girl dies. It’s like people forgot the opening sentence no matter how memorable it might have been. If you ask someone to quote a famous line from that book or movie you will probably get “Love means never having to say you’re sorry.” When Ryan O’Neal who starred in Love Story was fed that line in another movie, his reply was “That’s the stupidest thing I ever heard.” I tend to agree.

Perhaps Sagal was too clever with his opening line. Maybe he should’ve been more blunt. In an attempt to learn from his mistake we begin our tale as follows.

A couple of days ago I found out that the first girl I ever kissed had died in 2013.

The fact that she was the first girl I ever kissed is the only really significant thing about her. I’ve had other girlfriends (some living some now dead) who meant much more to me. But because she holds the distinction of being my first kiss, her story deserves to be chronicled considering that I’ve chronicled so much of my life story in blogs, emails to friends, and even published magazine articles.

I recently have gone on a string of Internet searches for long-lost friends. It’s not the first time I’ve done Facebook and Google searches to reconnect with my past but I seem to have done a lot of it lately. Perhaps it’s because a little over a year ago I passed the milestone age of 60. Perhaps it’s the fact that I made it to 61 and beyond that has caused me to gain more nostalgia for my youth.

In the past few months I’ve had some great success. I reconnected with an old college buddy named Frank Williams who was especially hard to find because Frank Williams is such a common name. Frank was part of a gang of people that hung out with me and my lifetime friends Rich and Kathy Logan. Frank used to play keyboards in a band that would play out local bars and nightclubs. I discovered that 40 years later he still is playing the part of “piano man” singing Billy Joel songs in bars and nightclubs. I finally discovered him on Facebook. He’s the guy who used to occasionally call me Christopher even though my given name is Chris. In retaliation I would call him Frankfurter. I would say if you could put a “… topher” on my name that doesn’t belong I can put a “… furter” on your name that doesn’t belong. It was also appropriate to call him Frankfurter because every day for lunch he would eat two hot dogs split down the middle on white bread piled with so much catsup and mustard there was almost more condiment then there was meat. We have swapped a few Facebook messages and will probably get together again for an in person visit sometime soon. Perhaps I’ll go see him play in a bar somewhere.

From the former girlfriend department I also recently reconnected with Ella Vinci via Facebook. We met in a sociology class in college my third semester at IUPUI and had lunch together every day after class. We went out for dinner and a movie several times. She took me to my first hockey game. She is normally a mild-mannered person however when she is at a hockey game her personality totally changes. She screams and yells at every hard hit “Kill him kill him!” I have often described her as the person who taught me a deep appreciation of violence on ice. She also happens to be the first girl not in a wheelchair that I ever dated. But more than any of those things she taught me that I could have a very enjoyable and rewarding platonic friendship with a woman. She deserves a major multi-part blog to really do her story justice.

Other Google searches for long-lost friends have not fared as well. I still can’t find grade school and junior high friends Teddy Hayes or Greg Whitney. There was a girl I knew at Northwest High School named Melody Richards or perhaps Richardson I forget. Like Frank Williams that name is too common.

Others I found too late. There is evidence that one of my best grade school friends Estel Troxel passed away several years ago as did my buddy Carol Nash. I found obituaries that I’m pretty sure belong to them. Much irony regarding Nash’s passing. Over the years whenever I have run into him various places he has greeted me with the words “Aren’t you dead yet?” He is referring to the fact that all of our friends from grade school and high school who had muscular dystrophy died in their late teens or early 20s. I always took his greeting as a backhanded way of saying “I’m glad you made it this far”. Fortunately for me I have a different kind of genetic neuromuscular disease than any of them had and I made it to 61 and counting.

But let’s get to the story that we really want to tell. Her name was Cheryl Fayette. She was a freshman when I was a senior at IPS #97 James E Roberts School. That was a special school built only for handicapped kids. The story of that school is chronicled in my award-winning magazine article “The Reunion” which you can read here.

The short version of the Roberts School story is that it was attended by me and other disabled kids from kindergarten all the way through high school. The high school consisted of approximately 30 students and that is all for years we’re talking about. Not 30 per year. There were just two teachers and two classrooms. It was the best they could do but the place was really a joke. That’s why I spent my sophomore through senior years attending my regular neighborhood high school Northwest High School part of the day. I went to Roberts School the other half of the day. I could not take all my classes at Northwest because it did not have an elevator in those days.

At Roberts they did their best to give us as “normal” of an experience as they could and to that end we actually had prom at the end of the school year. With only 30 students total we obviously did not have separate junior and senior proms. But to make it a little more special it was open to juniors and seniors only as well as recent alumni and of course their dates.

My junior year I didn’t want to go because I didn’t have a date. And it wasn’t so significant that I didn’t have a date but that I would not be able to get my picture taken dressed up in the tuxedo next to some girl. My friend Rosie, whom I had had a serious crush on since the moment I laid eyes on her in seventh grade, agreed to let me have my picture taken with her even though she wasn’t officially my date. You can read lots more about Rosie in the article “The Reunion” but for our purposes know that if I could’ve attended any event anywhere anytime with the girl of my choice it would’ve been her. When the prom photos came back, somewhere along the way my photos with Rosie got lost. Rosie and I did go out a couple of times early in our senior year but it was strictly just as friends. By the way if you’re wondering, Rosie passed away sometime in the early 1990s.

When senior year rolled around I plan to go stag again to the prom and got Rosie to agree to do retakes of the photos since we apparently broke the camera the first time 🙂 But fate had other plans for me besides Rosie. Cheryl Fayette really wanted to go to the prom but because she was a freshman she needed a Junior or Senior or an alumni to invite her.

Even with a bias of my lifelong crush on Rosie, I must admit that Cheryl was the best looking girl in the school. She was in a wheelchair but I don’t really know if she was spinal cord injury or what her particular disability was. She had a cute smile, long black hairy and a really nice chest. If the rumors were to be believed, that ample bosom had been thoroughly explored one day in the art supply room when she made out with Alan Whitney. It could’ve been just his bragging but the story was well known and she never denied it.

It was probably because she was the best looking girl in the school that guys liked to tease her relentlessly. One day one of the guys grabbed her purse and a bunch of them played keep away with it getting her to chase them around. They eventually hung it out the window of the second story boy’s restroom and invited her to “come and get it”. She went and told the shop teacher Mr. Batt and he went and got it for her. He just looked at the guys like “Seriously this is the best stunt you can pull to get a girls attention?” He did not turn them into the principal but warned them to not count on his generosity for future stunts. I was not directly involved in those shenanigans but I had a ringside seat and enjoyed watching.

At some point Cheryl made it known to everyone that she would welcome an invitation to the problem from me. So it’s really a matter of interpretation as to whether I invited her she invited me. But we have to be honest and say that she definitely made the first move. I eventually did ask her and she said yes but it was more of me saying yes I know you are me to ask you so this is me asking. It was sort of like she was the last girl and I was the last guy available. I don’t know if he ever really had any interest in be personally or not. But it didn’t matter. I ended up with a date with a hot girl for the prom.

I explained to her the whole story about Rosie and the lost pictures from last year. She agreed that I could do a retake photo with Rosie. I made it clear that in all other respects Cheryl was my only date. She went about finding a prom dress and I rented a tuxedo and purchased a corsage. The next issue to resolve was transportation. Of course neither of us could drive a car and even though there may have been wheelchair vans for hire in those days they were hardly like hiring a limousine for a prom date. My mom would drive us in our lift equipped van.

One of my buddies Wayman Glass also wanted to go to the prom and wasn’t going to let the lack of a date stop him. His major problem would be transportation as well. We determined that we could actually get 3 wheelchairs into our van so mom agreed that we could pick up Wayman, go get Cheryl, go to the prom, and take them home again. There would be one other stop along the way. Rosie got her mom to agree to have an after prom party for some people at her house.

The prom itself was really pretty lame. Obviously there wasn’t much dancing going on. The Tech High School swing band provided the music. There were munchies and fancy decorations and of course photos in front of a centerpiece. I don’t recall the official “theme” of the prom but the centerpiece was a giant peace symbol made out of chicken wire and crape paper. I got my photo taken with both Rosie and Cheryl. I still have the photos somewhere but I didn’t bother to dig them out for this blog. I probably should have. Perhaps I resisted because its better I remember it than I actually see it at this point.

When we went to Rosie’s house after the prom, all of the kids sat in the living room and our parents gathered in the dining room and drank wine. Mom agreed with me that the after party was much more fun than the prom itself even though she did not drink maybe more than a glass of wine since she was driving. The only bad part about the party was I didn’t end up sitting next to Cheryl. Somehow we ended up across the room for one another which I had hoped to rectify later but the room was so crowded we ended up that way the rest of the evening. I later apologized to her saying at least I could sit and look at the prettiest girl in the room all evening. Not my smoothest move but it was okay. Seriously though during the prom itself she was sitting next to me and I really couldn’t look at her. It was nice to be looking at this hot girl who was my date.

It turned out I was sitting next to my buddy Wayman at Rosie’s party. It was at that point, he was not an interloper who was going to ruin my date but he became my wingman who was going to facilitate the best part of the evening. I wanted to get a good night kiss but with her sitting across the room there was no chance. Also the three of us about to about to get into my van for the ride home which was no good. I knew that outside Rosie’s house was going to be my last opportunity. Wayman was “the man with the plan” as are all good wingmen. I had told him of my plan to try to kiss her and asked if he would give us a moment alone. He had a better idea. He deliberately left his jacket is Rosie’s living room. Just as my mom was about to load us into the van he said “Mrs. Young I forgot my jacket could you go get it please?” My mom went back in the house. Wayman turned his back. And I asked Cheryl for a good night kiss and she agreed.

As first kisses go… It went really well. It wasn’t too awkward. No tongue but for a first one that’s not unusual. Not too wet nor too dry. It was great. It did not escape me however that I was 17 years old, it was prom night, and I was just getting my first kiss ever. Around the city either that weekend or adjacent weekends, hundreds of guys were getting a laid for the first time as part of a prom night tradition. I like to think of it as me being on the right track but seriously behind schedule.

We dropped Cheryl off at her home and then took Wayman home. By that time it was about 2 AM. Wayman lived in a really rough neighborhood just off of 10th St. west of White River. When mom knocked on his door no one answered for a really long time. She said it was kind of scary being out at 2 AM banging on the door in a rough black neighborhood with nothing but a couple of 17-year-olds in wheelchairs as “protection”. His brother finally woke up and came to the door without incident.

So the entire evening was a fun adventure from my mom as well. Over the years she probably told as many stories about that evening as I did. When word got out among our friends that I had kissed her on prom night Rosie seemed very surprised. It might have been wishful thinking on my part that interpreted as jealousy. I remember looking at Rosie and saying “Don’t look at me that way… You blew your chance that this many times”.

I’m sad to report that Wayman was one of those guys with muscular dystrophy that Carol Nash was always talking about. Wayman Glass passed away at about age 25.

After the prom there was still about two weeks left in school before graduation. It was a difficult time for me as high school graduation always is. I knew I was going to be saying goodbye to friends that I would likely never see again. Again I refer you to my story “the Reunion” for more of the details about me somewhat depressing times all of us were going through at Robert School.

One of the things that I had been going through was the realization that if I was to ever find love in life, it probably was not going to be with another handicapped person. When I had a crush on Rosie at age 12 or 13, I never really thought about what kind of life we could or could not have had together. Although her disability was not so severe that she needed any help in daily living skills, she was just barely capable of taking care of herself. A few years later when her mother passed away she was able to live on her own in her own home or apartment for many years until she later married. On the other hand I need pretty much 24/7 help with everything that I do. And even though I had much more capabilities back then than I do now, she would never have been physically capable enough to do everything that I need someone to do for me on a daily basis.

There was always the possibility that I could hire the attendant to perhaps come in the morning to dress me and to put me to bed at night. Ideally such an attendant would be “live-in” but that would ruin our privacy and naturally strain the relationship. There was the option that I could marry a girl in a wheelchair and we would continue to live with my parents or hers but that also seemed like a really bad option. We later knew of disabled couples who married but lived with parents. Although Rosie’s mom and my folks had always done their best to help us be as independent as possible, other people we knew struggled because their parents continued to treat them like children into adulthood. The one couple married couple we knew who lived with their parents ended up divorcing shortly later. Relationships fail for lots of reasons but I always presumed it was information that the “stay with the parents” solution to my problem was no good. Carol Nash and his wife Mary had a great marriage but they were both capable of taking care of themselves despite their disabilities.

I had come to the conclusion that I would never seek a serious romantic relationship with another handicapped person. Perhaps it was an excuse to help me deal with the realization that I was never going to end up with Rosie. But I really think it was the fact that I was older and more mature and really thinking about my future and not being able to envision it working out with another girl in a wheelchair.

After the prom, Cheryl and I exchanged some love letters and we had a really nice day at the class picnic where we went off for a stroll through Garfield Park by ourselves for a while. No repeat kiss but it was really nice. After graduation we talked by phone couple of times and talked about getting together again but it just didn’t happen. It seemed to me it would been dishonest for me to pursue a relationship with her, knowing up front that it was destined to go nowhere. Keep in mind this was almost 2 years prior to Ella Vinci illustrating up to me that I can have a really fun and fulfilling platonic relationship with a woman. So the end result was I never spoke to Cheryl again. But I think I did see her once…

It was many years later I was at a rock concert at Market Square Arena. I saw a girl in a wheelchair sitting one section over from me. She was really good looking and I thought I should try to go over and talk to her just for the hell of it. In fact after the concert I went past her, made eye contact, smiled but never said anything. As I did so I thought she looked kind of familiar. I was on the elevator headed down to my car in the parking garage of MSA when it suddenly occurred to me why she was so familiar. It was very likely my prom date and first kiss Cheryl Fayette. What an idiot I had been for not realizing it first and saying something to her. I’m not 100% sure it was her but I’m pretty sure.

So what about one in the morning one sleepless night last week I decided to Facebook search and Google search Cheryl Fayette. And I found her on Facebook! Her profile picture was definitely her. She was still a very attractive woman. As is usual when I reconnect with old girlfriends, the first thing I notice is that they have a boyfriend or a husband. There was a guy with her in the photo and I didn’t think it was a brother. In fact I later determined it was not.

Her posts on Facebook were not public and the three photos that were visible all were posted over the course of about 2 months in 2013. I could see her other Facebook friends and found the guy who was in the profile picture with her. His Facebook posts were public but they also ended sometime in 2013. Many of his posts thank God that he was alive yet another day. Some people wrote to him asking “How is Cheryl?” but there was no reply from him. There was nothing in his timeline newer than 2013. I got a familiar suspicious feeling so I turned to Google.

A search for “Cheryl Fayette Indianapolis” on Google produced this as the number one result.

http://www.legacy.com/obituaries/indystar/obituary.aspx?n=cheryl-a-fayette&pid=166294873

It is an Indianapolis Star obituary published August 7, 2013 saying that Cheryl A. Fayette 55, Indianapolis, died Aug. 3, 2013. It told the time of the visitation and services but gave no other information. In 2013 I was 58. If Cheryl was a freshman when I was a senior that would put three years between us so the age was right. It had to be her given the abrupt cutoff of her Facebook information at the same time.

After I found out she had died I told my dad “I found out the first girl I ever kissed died in 2013”. To try to lighten the moment he said “You killed her”. I laughed and said “It must’ve been a slow and painful death. It took over 40 years.” We both just laughed.

Anyway, I really don’t know who the guy was in her photo but it’s obvious from looking at it that he was someone special to her and vice versa. I’m happy for her on that account that she had love in her life even if her last name did not change which I presume means she did not marry. It was similar to the relief knowing that Rosie had eventually got married and had a child even though she died at an early age as she knew she would.

But somehow I can’t help but feeling that I missed an opportunity for a lifelong friendship. Had I known what Ella and Joyce and Judy and others have taught me over the years about the rewards of platonic friendship I might not have dismissed so quickly a continuing relationship with Cheryl.

I really should have googled her much sooner.

I Went to Communion Today.

For a lifelong Catholic that isn’t necessarily an extraordinary statement and to be clear I always receive communion when I go to mass. But it’s been a many years since “I WENT” to Communion. The difference between receiving communion and going to Communion is that for the first time in years I was able to go up in the normal communion procession along with the rest of the congregation. I went to it. They didn’t bring it to me.

In recent years and had become so difficult for me to drive my motorized wheelchair that I asked my pastor the late Fr. Larry Crawford if he or one of the other Eucharistic ministers could come down the aisle to where I sit and bring me communion. Even when I was still able to drive my old wheelchair, I had to put the stick in my mouth to steady my hand on the wheelchair control. It got to be too difficult to drive up, take the stick out, receive communion, put the stick back in my mouth, get my arm in the proper position to drive, and then drive back to my pew. He said it was no problem because he would send Eucharistic ministers down the aisle to give communion to other elderly and disabled people.

After Fr. Crawford retired and unfortunately passed away shortly thereafter, our new pastor Fr. Mike has always come down the aisle to bring me communion. In the three or four years he’s been here that’s the way it’s always been.

But now with my new power chair that I can drive using a joystick that I control with my lips, for the first time today I drove up in the normal communion procession and took communion just like everybody else.

It was a very good day.

News about My Disability

In the link below is an article about a minor breakthrough in research about my kind of disease known as Spinal Muscular Atrophy Type II.

I want to give a little context about this article… I have SMA Type II and this study was with SMA Type I. The type I patients exhibit extremely weak muscles at birth and rarely reach their first birthday. It is basically an extremely severe version of what I have. Both types of SMA are caused by a problem with something called the SMN1 gene. The treatment described in this article is called gene therapy. Basically they give you a virus that is designed to insert a repaired version of the gene into your system. It basically infects you with a cure. They tested nine patients. Three of them got a low dose. Six of them got a midsized does. This was mostly just to test that the treatment was safe and did no harm. It wasn’t really to determine how effective the treatment was. However the results showed that the three patients that got the low dose did show some muscle improvement on a standardized test of infant muscle capability and that the six who got the midsized dose showed even more improvement. And none of them died nor did any of them have to go on a ventilator. Basically it’s an extremely preliminary indication that it worked. So the good news is that he may have found some extremely preliminary indications that this treatment can cure my disease. That’s the good news. The bad news is this is working on people who are basically newborns. In someone like me who have had the disease for 60 years, it’s done a crap load of damage to my body so the best I can hope for is that if the treatment ever became available down the road for Type II patients like me, the best I would hope for would be I wouldn’t get any worse. I’ve known for a long time that if they did come up with a treatment, that would be the case. Still it’s good news.

New Gene Therapy Results Announced at World Muscle Congress.

Being Thankful on my 60th Birthday

A little over six months ago I asked sister Carol if she would throw me a birthday party for my 60th birthday. It may seem strange to ask someone to throw you a party but 60 is a huge milestone for me. The party was today my birthday July 12 and there was a great success. I had lots of friends and family there. Some family I don’t see very often except perhaps at funerals so it was great to have everyone together for a happy occasion.

Although they thought they were there to celebrate this big milestone in my life I also had a secret hidden agenda. I did want to celebrate my birthday especially since the doctors and many other people didn’t think I would live very long when I was a child. But my secret reason for wanting the party was to thank everyone for being such a blessing in my life. My longevity has been sustained by my faith and my faith is sustained by the blessings that are the people who love and support me. So I wanted to thank them personally and that’s one of the main reasons I really wanted a party. This was my way to celebrate all they’ve done for me. So I took this opportunity at the birthday party to tell them so.

There were many friends and family who could not be there. I have people who are very special to me who live hundreds of miles away. That’s why I recorded this message at my party. It’s my thank you to all of them as well.

It’s not only family and my closest friends who deserve thanks but it’s also other people I’ve come in contact with online such as the friends I made while developing the POV-Ray Ray Tracing graphics software, people I’ve played games with online, and in recent years the people from the maker community who have helped me through programming and electronics projects. Thanks also to the people who have come up with creative ways to use my code that I’ve shared online. You’ve inspired me and supported me and encouraged me to keep contributing the best I can.

So whether you are blood relative, distant relative marriage twice removed in-law, dearest friend, or casual online acquaintance… this is my message to all of you in this video taken at my birthday party.

Here’s what God looks like to me.

As I said in the video… All the proof I need that God exists is the blessings that come through family and friends. That's why this photo of loved ones gathered for my 60th birthday are my image of God.

As I said in the video… All the proof I need that God exists is the blessings that come through family and friends. That’s why this photo of loved ones gathered for my 60th birthday are my image of God.

“Do you want to watch some football?” A Thanksgiving Parody

This blog was originally written on Thanksgiving 2014. Be sure to see the extra note at the bottom of the page to read what happened next.

I was inspired to throw together this little parody today while watching football when I noticed how well the phrase “Do you want to watch some football?” fit the melody. I hope you had a great Thanksgiving and enjoy this little composition.
(Sing this parody to the tune of “Do you want to build a snowman?” from Disney’s animated feature “Frozen”)

Do you want to watch some football?
Nothing else is on TV
My belly’s full of turkey now
So on the couch, is where I need to be
I used to be a Bears fan, but now I’m not
Their record’s the reason why.
Do you want to watch football?
If you’re not watching football
Bring me pie!

(Second verse)
Do you want to watch some football?
Second game will soon begin
Ol’ Romo has all day to throw
The poor defense can never get to him
He throws an interception, the Cowboys lose
At halftime I had more pie
Do you want to watch some football?
If you’re not watching football
Okay bye.

(third verse sing slowly and melancholy)
All alone still watching football
The third game’s about to start
My belly feels much better now
’cause I finally passed a great big fart
I don’t know what the score is
But I don’t care
The tryptophan made me high!
I’m still gonna watch more football
I can’t get enough of football
But no more pie!

After I posted this blog online and reposted it the following Thanksgiving, some guy who I’ve never met before in one of my maker groups wrote me an email and told me that he loved my little parody so much that he had to record it. He found a karaoke track for the song and recorded his voice over it. The karaoke track cuts the second verse a little bit short so he had to drop some lines. But other than that he sang it exactly like I intended it to be sung. Click the link below to play the MP3 version of my song.

“Heard While Disabled” Campaign

Today I came across this article from The Huffington Post about people raising money for various disability causes and raising awareness about the stupid hurtful things that people say to the disabled such as “You’re so pretty it’s a shame you’re in a wheelchair.” I had interesting experiences with that at a very early age.

Most of you who know me know that I went to a special all handicapped school from kindergarten through high school (1960-1972). One of the reasons we were isolated in such an environment rather than being mainstreamed was that they wanted to protect us from the hurtful things that kids would say to us. But I recall an incident in kindergarten where we proved that we were more normal than they gave us credit for. You can read more about that school and my experiences in an article.

I’m sure it was from the constant nagging of my grandmothers and aunts asking me “Have you got a girlfriend yet?” just days after entering school. So to get them off my back I picked a classmate named Cheryl to be my girlfriend even though neither of us really knew what that meant. One day I was drawing this really cool picture of an airplane and for whatever reason she decided to reach over and scribble on it. She did so by holding one of those chunky kindergarten style crayons between her toes because she had no arms. When I tried to return the favor and scribble on her picture she pulled it out of the way where I couldn’t reach it.

Verbal insults flew back and forth and I don’t really know who was the first to get really personal about it so when I tell the story I give her the benefit of the doubt and take credit for the first verbal punch when I said to her “Nobody would ever want to be your girlfriend because you can’t hug them because you haven’t got any arms.” To which she replied “Well you’re never going to get married because you can’t walk down the aisle because you’re in a wheelchair.” At that point the teacher stepped in and broke it up. I think I played the handicapped card because she took advantage of my disability and wouldn’t let me get my revenge by scribbling on her drawing as well. As a side note I think it’s funny that a couple of five-year-olds perceived romantic relationships to be based on hugging and walking down an aisle but that’s a different story 🙂

In later years when the whole issue of special school versus mainstreaming was debated whether recall that incident and realized that they weren’t protecting us from anything. I won’t debate whether it’s nature or nurture that makes us attack what is different from us but that incident leaves me to believe that it’s pretty much universal.

Of course all of that comes from simple ignorance. In the article linked above the person didn’t really realize how insulting it was to say “You’re so pretty. It’s a shame you’re a wheelchair.” My girlfriend and I and age 5 really were trying to be cruel to one another. If someone is trying to insult me and using the disability as the mechanism it doesn’t really bother me because they’re just being stupid and I say fuck them. And if they do not realize they are being insulting I dismiss that as well.

The only thing that really bothers me is when you’re in the shopping mall and some little kid points that you start asking questions “What’s that?” Or “why are you in that thing?” and then the parent slaps the kids hand for pointing and tells them to shut up. That really pisses me off. They are stifling the kids natural curiosity. The parent is also sending the not too subtle message that “people like that” should be avoided, not talked about etc. I’m not sure which bothers me more: Teaching the kid to avoid me or stifling their natural curiosity. Let the kids ask questions. Answer the questions openly and honestly. Just maybe when they grow up they won’t think it’s a shame that we’re in a wheelchair. Then they can just make fun of us for other reasons 🙂

One afterword: Much of what some disabled people find offensive doesn’t really offend me at all. They get hung up on the words handicap, disabled, differently abled, challenged etc. For an overview of my thoughts about what each of these words mean, check out this article.