Alex Howard is a speaker in RespectAbility’s Disability Training and Speakers Bureau. He is also an alumnus of both our National Leadership Program and our Summer Lab Program for Entertainment Professionals with Disabilities. As part of a job application, Alex was charged with writing a letter to himself before receiving his diagnosis of MePan. MePan is a rare mitochondrial disorder – Alex is only 1 of 19 people in the world who has it. The majority of the 19 people are also Jewish and a significant portion of them live in Israel.
Currently, Alex takes comfort in being able to participate in research on how to help people with this disorder. By giving blood, he gets to be in contact with other people who know what he’s going through. He is, however, doubly unique as the only person in the world who has both MePan and Ehlers Danlos Syndrome, and for most of the first 30 years of his life, he was undiagnosed. This is a letter from current Alex sent to the Alex who was struggling with the unknown. Though he started it for a job application (he is looking for opportunities in the entertainment industry), it has helped him to realize that he really has a unique perspective on life that can be of value to the entertainment industry, which is looking for unique stories. Because October is National Disability Employment Awareness Month, Alex gave us permission to share the letter in the thought that it might help others to see the value of their uniqueness.
I know it seems like life hasn’t ever been easy. Living with an undiagnosed disorder creates a lot of self-doubt. I know you feel like no one really understands what you are going through. I can’t tell you those problems will ever go away, but I can tell you there are things in the future that will make things easier to deal with.
You will meet people at RespectAbility and accept yourself and your disability, opening up a whole new community of supportive people to you. You will meet people you can talk to about your low vision, your Ehlers Danlos and even your undiagnosed condition. You will discover audio description, which will ignite a fire under you and make you passionate beyond belief. Not only will your current family and friends stick around and support you, and an entirely new community of people that will be there for you. You are also going to have some very cool jobs, not only at RespectAbility but at DC Comics. Do not give up on your dream.
Movies and television have always been your passion. Remember how your favorite movies and television shows make you feel. The things that inspire you. The things that make you say, “I want to make something like that.” “Breaking Bad,” “Back to the Future,” “ET,” “Terminator 2,” “Halloween” and “It Follows.” I know having a disability can feel like a burden. It can feel like a weight pulling you under water while you are trying to stay afloat, but it doesn’t have to be that.
You see people who can do simple things that you can’t do like drive, and you think, “Why would anyone pick me over them?” They will, because you have a very unique perspective on life with experiences that no one else has. Growing up with a rare disease can make a great story.
Hollywood is thirsty for unique stories and perspectives. Use your experiences and change your frame of mind. These experiences are a blessing, not a curse. Own your disability. You aren’t defined by it, but, it is a part of you that you can’t change. Use it in your writing. There is a place for you in entertainment you just haven’t gotten there yet. Embrace your disability as well as your love of horror, movies, TV and things will get better. People will see how passionate and driven you are and it will pay off and be so worth it.