Living Around Disability

I carry a rather long list of diagnoses, several of which alone would qualify my permanent, total disability status. Most of the time, I try to ignore my disabilities. I am not embarrassed by my condition, nor am I apologetic. Thinking about them makes me feel sorry for me, which isn’t productive or healthy.

However, I do write articles that I think will promote understanding or protection of people with disabilities without addressing my particular diagnoses or complaints. Writing from this once-removed point of view serves two purposes. It protects me from pity which, despite, or maybe because of, the good intentions of the person delivering it usually leaves me feeling undeserving, because I am okay. Politically and financially, circumstances are not okay for most people living on disability incomes, so writing general essays, stories, and poems allows me an opportunity to use my experience and understanding of difficult political and financial circumstances to help others. Once in awhile, I write articles that include a universal glimpse from the inside.

In this article, I want to share my guide to living around disability – a positive note, because singing the blues, especially with my vocal talent, doesn’t get me far. Being born with optimism, a helpful measure of self-importance, and rose-colored glasses probably gave me a giant head start, but I believe with determination those who want can catch up.

Knowing and appreciating my self and my body are the most important steps I can take to ensure I live a happy, productive life. When I am aware of and loyal to my strengths, weaknesses, limits, and dreams, I function with confidence and I leave no questions for the other people in my life.

I live on a schedule and activity level that works for my body, with my conditions. I don’t expect to be like anyone else or for anyone else to be like me, and I demand the same in return. I would not be ashamed if I were diabetic and required a strict dietary regime, insulin injections, and protective footwear. If I were a cardiac patient, I would insist my family and friends understand my need for frequent walks and my refusal to shovel snow. Likewise, I expect the people around me to understand that I will eat, sleep, exercise, and entertain around my conditions. I would not apologize to anyone if I had been born with no legs or a big nose, and I will not apologize for having no energy or walking funny.

My energy is precious to me. I will leave the dishes on the drain rather than spare the energy it takes to open and close the cabinets and drawers, and the toilet paper on the counter instead of putting in on the roll. I clean house and do laundry when I am able, which is not usually as often as others do. The only people I give permission to comment on those activities are those who say, “Move over so I can do that for you,” and people under the age of three.

I make sure what I will do is nothing more than what I can do, comfortably. I don’t over commit, and I don’t apologize for not being able. To some, this may sound selfish. I believe just the opposite. When I take care of me, everyone around me knows exactly what to expect. The ones who truly care about me are happier because I haven’t sacrificed my pride, my energy, or my mental health in apologies and regret.