Thoughts on Living With a Disability

Other than the few weeks following my C-section, I've never been disabled. My perspective on disability comes from my best friend becoming a paraplegic when we were in High School, living with a child with a chronic illness, providing physical therapy to many patients with varied diagnoses, and one special lady that changed my perspective on life many years ago. 

Over the years, I've treated 1000's of patients, and one thing seems to stand out in those who do better-It's a sense of optimism. One of the biggest frustrations with Chronic Fatigue, Myalgic Encephalomyelitis or Fibromyalgia is not knowing the cause. I do believe we are on the verge of discovering biomarkers for these illnesses, but currently there is no definitive blood test or imaging technique to tell us the cause of your illness. Many CFS/ME patients go years without help but it's important never to give up hope. This feeling, that things will get better, seems to be the driving force in so many of my patients. 

The important thing to remember is that while you may not be at your healthiest, you are not your disability. Do not let it define you. Years ago, when I was going to college in LA, I lived with an amazing woman who had a severe relapsing form of Multiple Sclerosis. In trade for room and board I cooked, cleaned, shopped and drove her to all her appointments. Her name was Dianne Piastro and she wrote a syndicated column for the Long Beach Tribune called "Living with a disability."  While I had to help her with nearly every task, she was one of the most independent women I'd ever met. This is an excerpt from an LATimes article about one of her many passions--semantics. 

But I applaud her doughty stand against misguided reformers who favor the use of such embarrassing terms as differently abled and physically challenged. She writes: "Euphemisms like differently abled, physically challenged and handi-capable are misleading attempts to avoid reality, and I suspect that the people who coin those phrases have an unconscious prejudice toward, or fear of disability due to the stigma attached to it. Thus they deny reality instead of dealing with it positively . . . How much more informative to say I am disabled, you are nondisabled; I have a physical disability, you do not . . . ."

Piastro points out that a disability may or may not be a handicap. People using wheelchairs are handicapped by stairs, but not by elevators. "Appropriate equipment and an accommodating, accessible environment can reduce or eliminate the handicapping effect of a disability."

She concedes that disabled , like handicap , has a negative history, but handicapped is the term most often used in government and law, and disabled is common and acceptable. But people with disabilities is better, in her mind, because "it puts the person first, and does not lump individuals into a dehumanized category as the term disabled does." She notes, however, that the word disability has never meant a total lack of abilities.

I learned a lot from her, not just about living with a disability, but also about life. One of the coolest lessons she ever taught me was to never respond to someone when you are mad. She said count to 10 in your head and if you're still mad, sleep on it. She also said, if you don't know the answer to someones question say, "let me get back to you tomorrow."  It sounds so simple but so often we want to answer and solve everything today. Living with a disability taught her, there is always tomorrow. Living with her taught me about life.