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
Freedman on the Go 