Tag Archives: Moebius syndrome

Breaking Barriers

17 Jun

The Portland Gay Men’s Chorus will be performing its ICONS concert this Saturday, June 21, at 7 p.m. at the Arlene Schnitzer Concert Hall. In our performance we will be showcasing several different storytellers depicting different aspects of our lives in the LGBTQ+ community. While my piece wasn’t chosen, I decided to share what I wrote here as an example of what you might see during our concert. In the section entitled “Breaking Barriers,” we were asked to tell the audience about a time we “broke through” in some way such as an achievement, transformational conversation, or just a monumental event relevant to our LGBTQ+ experience. My answer to that question is below.

Long before I’d learned the word “intersectionality,” I was very much aware that I lived in several distinct communities. Unfortunately, I also knew that I’d likely be facing various levels of prejudice simply by belonging to them.

I was born with an extremely rare neurological disorder known as Moebius syndrome which left my face bilaterally paralyzed. Because so few people knew what Moebius syndrome was, I was subjected to a great deal of bullying and misunderstandings from people who thought that I was mentally impaired. Even though I had a strong support system at home, I still suffered from crippling self-doubt and fear about how others perceived me.

When I came out of the closet at the age of fourteen in 1983, I was already aware that being out at that time was incredibly risky. Although I came out of the closet to my mothers and some close family friends, because of my prior experience of being bullied, I had no desire to face even more prejudice against me and didn’t tell many other people at first. As a result, my coming out process was a slow one, which ultimately culminated with me joining the Portland Gay Men’s Chorus in 1992 and becoming almost completely out of the closet in the process.

About two years after joining PGMC, while driving home with my stepmother, I turned to her and said, “You know, I’ve counted five ways that people could be potentially prejudiced against me. I’m gay, disabled, Jewish, short, and left-handed.” My stepmother thought about this, then turned to me and said, “Well, yes, that’s true that people might discriminate against you. But what would happen if you looked at all of these things as gifts?”

That thought floored me. I’d learned to accept the various pieces of myself over the years, but many times they’d felt like obstacles to be overcome. Not once had I ever felt that these components of my life were gifts. I don’t remember the rest of that conversation. I only knew that my self-perception had been upended by a very timely insight.

Today, many years after that conversation, I now understand what my stepmother meant, and it taught me an important lesson: Sometimes, for you to best see yourself, it takes an act of compassion from another person for you to best recognize your gifts.

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Statistical Improbabilities

10 Mar

How often do you pay attention to statistics when you’re thinking about going out for a specific job or activity? And what do you tell someone who thinks you shouldn’t be able to accomplish something because so few people succeed at it?

Recently, for whatever reason, I started paying attention to statistics, especially pertaining to my own life and how unusually singular my circumstances were. Case in point: I was born with an extremely rare congenital neurological disorder known as Moebius syndrome. This condition is so rare that significantly less than 1% of the human population has it. Furthermore, at the time I was diagnosed, approximately 300 known cases had been correctly diagnosed since 1900.

Upon learning about my condition, the doctors spoke with my parents, earnestly stating that I should be placed into an institution since the chances of me pursuing a normal life were very remote. Thankfully, my parents decided against this course of action and took me home. By the age of three, we discovered I had perfect pitch after I could play the theme song from the movie Patton on the piano note for note. At the age of four, I taught myself to read which facilitated my entry into the talented and gifted (TAG) program. Regarding the prevalence of people with perfect pitch, 1 in 10,000 people have it, while 6% of all children in the United States participate in the TAG program.

When I entered high school in the early to mid 1980s, I discovered my love of acting and musical theater and very much wanted to consider acting as a career. However, there were extremely few actors with disabilities on television and film in those days. It wouldn’t be until 2007 that I finally made the decision to consider acting as a viable career, and even then, I was very wary of the statistics involved. Approximately 2% of all performers can make a living in the industry, and only 3% of all lines read from scripts are given to actors with disabilities.

I made it a point to learn about many performers with disabilities and their contributions to television and film but was not at all surprised to discover that we were not represented very well in the media. I admit to being daunted by those figures, but I nevertheless persisted in performing as a singer and very occasionally as an actor. To continue building on my acting skills, I ended up joining Toastmasters in 2013 to become a better actor and public speaker. I hadn’t even considered becoming a Distinguished Toastmaster until at least several years into my journey as a public speaker, whereupon I’d also learned that less than 1% of all Toastmasters become Distinguished Toastmasters.

Mark Twain is often quoted as saying, “There are three kinds of lies: Lies, damn lies, and statistics.” At this point, I think I’m closer to believing him than ever. Or to put this another way: At what point does paying attention to all these statistics become a distraction? Granted, statistics can be a great way of measuring success in a specific field of study, but it also has the negative effect of telling someone, hey, maybe you’re not ready for this profession yet. After all, if only a small percentage of people make a living as a performer, shouldn’t you consider alternatives, or at least have a Plan B?

The truth is that life isn’t all about statistics so much as it is about taking the first steps towards what you need to accomplish. And here’s what I’ve discovered: Statistical improbabilities can be thwarted by creating attainable goals, and no one should really tell you what you’re able to accomplish, even if it’s meant as sound advice. If you want to be an actor, for example, go for it. Maybe you won’t make a living from it, at least at first, but there are a lot of positive benefits from developing acting skills. Learning how to perform onstage can help boost your confidence, enhance your creativity, help you develop empathy for others, and provide a safe space to explore different emotional states. Above all, if it’s something you enjoy, keep at it, and ignore the naysayers who believe it won’t benefit you in the long run.

This year I’m committed to finishing my Distinguished Toastmasters Award, and the end is almost in sight with only a few more exercises to go before completing the process. Never mind the fact that I’ll be in the 1% of all Toastmasters who complete this journey; the main goal is to become an outstanding professional speaker, not to worry about the rarity of the circumstances or whether I can turn this into a full-time career. The point is to turn those chances you take in whatever career you choose into attainable goals that you can follow. I wish you well on your journey.

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This Is Me, and Me Again

5 May

Some of you have read my About section in which I describe a bit of my background and the purpose of this blog. The video below could be considered a continuation of that story.

In November 2018, Bob Mensel, our then-Artistic Chair of the Portland Gay Men’s Chorus, emailed me asking me if I wanted to share my story in an upcoming concert entitled “Our Audacity to Hope.” In the concert, we would represent nine different minority groups through songs as well as short videos created for the event. I was asked to represent the disabled community. In summary, I was to write a 400-word letter of my life on growing up with Moebius syndrome which would then be narrated by me in the video. I also sent in photos of myself at different ages highlighting key periods of my life. Both of these would be utilized to make an approximately three-minute video to be shown at the concert.

Perhaps the biggest incentive that Bob gave me was that I would sing a solo right after the video ended, namely, the song “This Is Me” from the movie The Greatest Showman. I gladly said yes, both for the opportunity to sing such a wonderful song but also for the chance to tell my story. Too often, people with disabilities are shamed into not speaking up or stigmatized into believing that their stories don’t matter. I felt that sharing my story would inspire others to do the same.

In addition to Bob Mensel, I also want to also thank Tim Liszt and David Sims for their incredible work in creating the videos. It’s not easy putting together a synopsis of your life that can be shown in a three-minute video, believe me, and they did a masterful job with it. Big kudos should also be given to Vikram, Sue, Damon, and Gus for telling their stories and sharing their perspectives during our concert, “Our Audacity to Hope.” 

I’ve included the text of the letter below for clarity in case parts of my speech are harder to understand than others. Enjoy the video!

Dear Friends: 

There are times when posing for a picture that the photographer will ask, “David, why aren’t you smiling?” Let me take a moment to answer that question.

Shortly after I was born, it was discovered that I had a rare neurological disorder called Moebius syndrome. Essentially, the cranial nerves that control facial and eye movement did not connect properly, leaving me with a bilateral facial paralysis, which included partial paralysis of my tongue. In addition, I had clubbed feet and a lazy eye — both of which were corrected early on. 

While living with multiple physical disabilities from an early age was daunting enough, living with people’s perceptionsof what I had was probably the worst aspect of having Moebius syndrome. I was subject to considerable bullying, particularly because of the pronounced speech impediment that I still have today. It was not uncommon for people to believe that I was stupid or incompetent, despite ample evidence to the contrary.

I was quite fortunate, however, to have a solid network of family and friends. I grew up with two mothers, which made coming out as a gay man a lot easier. I was always encouraged in my academic pursuits, and I went to college twice, first earning an English degree with a minor in psychology from the University of Oregon, and later an associate’s degree in medical transcription from Mt. Hood Community College. But the accomplishment of which I’m most proud is that I have celebrated over 30 years of volunteerism and advocacy in the LGBTQ and other communities, which continues to the present day.  

I’ve never felt that my disability is a good indicator of my intelligence, talents, skills, or abilities. In fact, I believe that the measure of one’s worth can be found in one’s accomplishments, not merely in how a person copes with their disabilities. When telling people about my disability, I’ve also found that a healthy dose of self-deprecating humor is really the best way to break the ice. For example, I often mention that I have three advantages because of Moebius syndrome: I have a great poker face, I will never get any wrinkles, and my disability actually keeps the haters away. Keeping the humor intact while leading with my strengths has been the surest way for me to be successful in my life as a person.  

Thanks for listening. 

Sincerely, 

David Freedman

Portland Gay Men’s Chorus, “This Is Me”

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