January 23,2009 Kathryn lives with muscular dystrophy and has become a counselor to help others deal with personal limits
Paul Apelgren wanted to make a film about his Aunt Carmen and Uncle Steve. Carmen wanted the film to be called Soul Mates. Steve wanted the film to be called Gimp Love. The film shows they’re not your normal relatives, they’re outspoken, genuine, and hilarious. They also face tremendous hurdles on a daily basis. The simplest of tasks are extremely difficult. Carmen has Retinitis Pigmentosa. She is ninety-five percent blind and what little sight she has left is going fast. Steve has Muscular Dystrophy. Two years ago he could still sit up; now he can barely wind his watch. His illness is terminal. Carmen says, “Hopefully people won’t feel sorry for us and all that crap because it’s so annoying.” They see their life as a movie, a love story. Carmen and Steve met in a disabled acting class after a run of failed marriages and relationships. The film is an intimate look at the power of love and how it sustains two people who by all measures seem like they cannot make it. As the story progresses it becomes clear that things are “not all peaches and roses.” Especially when the biggest obstacle is the floor. Tensions run high. Carmen is the [...] continue the story
ACADEMY AWARD WINNER! According to Mark O’Brien, “The two mythologies about disabled people break down to one: we can’t do anything, or two: we can do everything. But the truth is, we’re just human.” O’Brien was a frequently published journalist and poet, and a contributor to National Public Radio. He contracted polio in childhood and, due to post-polio syndrome, spent much of his life in an iron lung. Yet for more than forty years, he fought against illness, bureaucracy and society’s conflicting perceptions of disability for his right to lead an independent life.
Breathing Lessons breaks down barriers to understanding by presenting an honest and intimate portrait of a complex, intelligent, beautiful and interesting person, who happens to be disabled. Incorporating the vivid imagery of O’Brien’s poetry, and his candid, wry and often profound reflections on work, sex, death and God, this provocative film asks: what makes a life worth living?
October is National Disability Employment Awareness Month (NDEAM). Therefore, it seemed like a good time to tell parts of my story relating to being “disabled” with chronic invisible illnesses as a young adult in the workforce. A lot of the patients I hear from faced the challenges of developing these illnesses in their 40’s (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce. At 45, it’s hard enough to give up your job – at 15 (age at diagnosis) it’s really not an option. Hopefully what these patients went through can help me in this challenge.
In my last post, “Once Upon a Time: A Tale of Disclosure”, I discussed my decision to disclose my illnesses to my firm before I was hired full-time. Now, I’d like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation. To be clear, I’m not suggesting all other chronic patients follow in my [...] continue the story