Alex Howard is a compassionate, funny guy, to whom it is incredibly easy to talk. Alex has MEPAN Syndrome – one of only 18 people in the world with the condition – and Ehlers-Danlos Syndrome. MEPAN Syndrome is a rare genetic neurological disorder that usually presents in early childhood, but Alex was not diagnosed until age 27.
Alex’s great sense of humor definitely helped him cope with being undiagnosed for his first 27 years and continuing to live with uncertainty. He explains that living without a diagnosis and being the kid in school with “an undiagnosed neurological condition” tends to bring with it loneliness and isolation, and Alex indeed experienced these feelings. Films and movies have long been part of Alex’s coping mechanisms, along with, of course, jokes. On bad days, Alex has found solace in villains in movies like, The Joker. He joked, “Well, at least I’m not that guy!”
Even now that he knows more about it, the rarity of MEPAN Syndrome means that Alex must still cope with uncertainty. One of his main symptoms is decreased vision, which can eventually lead to blindness in adulthood. Over time, people with MEPAN have begun to use walkers or wheelchairs, but Alex is still fully able to walk unassisted. Because so few people have this syndrome and it affects every individual in a different way, the full progression of Alex’s condition is not known. The reality of this has been central to Alex’s life.
Judaism has always played a significant role in Alex’s life. From early on, he has felt a sense of community with those who identify as Jewish. He has to be creative in his Jewish life in order to address his low vision. For example, when Alex had his Bar Mitzvah he quipped that while he was “reading” the ten commandments, he had also memorized them a bit.
Some years later, Alex attended a Birthright trip to Israel, which really helped him come into his own. Because Israeli experts hired a soldier to assist him on the trip due to his low vision, he met his current roommate, another person on the trip. Without that accommodation, Alex would not have gotten to experience Hanukkah in Israel, which was a unique and “super cool experience!” Birthright helped Alex to realize that his Judaism and disability can coexist and even complement one another.
Alex is a bit of a movie buff and he has particularly found his passions within Disney and Pixar films. Movies build a great sense of community for him. One of the films that really got Alex hooked was Terminator 2, because “at its core, it’s about humanity, and the whole concept is great.”
He most recently watched the Disney and Pixar film Luca. “The message is great… It’s all about stepping out of your comfort zone and being more inclusive,” he says. He feels that messages like these are similar to some in the Torah, as they help to teach great life lessons.
Ever since college, Alex has wanted to work in film development. His other passion is audio description, which has personally impacted his viewing experience. As Alex knows, for folks with low vision, audio description tracks are integral to experiencing films in a full and meaningful way.
Alex has found inspiration beyond Judaism and watching films. He looks up to a pitcher on the Dodgers, Julio Urias, who has poor vision in his left eye. Ortiz inspires Alex to think “wow, if he could get into the MLB, I could be an assistant in the film industry.”
Alex has found ways to advocate for a more inclusive entertainment industry. Entertainment still has a distance to go in terms of including people with disabilities, and Alex wants to be part of the solution. He has a tremendous amount to contribute to any production team he joins, and just asks that you look past his disability and see his talents.
We are excited for Alex to find a great job in the film industry! If you are interested in having Alex speak at your organization, you can contact Jake Stimell at JakeS@RespectAbility.org.