Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-seventh question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:
Have recent advancements in medicine or technology had any effect on the way you manage your disability?
This may be a question of semantics, but I have never considered “managing” my disability as something I do in my daily routine. Some medical providers talk about “managing” your diabetes or blood sugar, or “managing” hypertension. Changing technology has made it easier for me to function in a world designed for the nondisabled, but I have never defined that as “managing” my disability.
Because I am a word geek, I did what I often do when I am writing. I opened my dictionary and read definitions of “manage.” According to my trusty Merriam-Webster, manage is a transitive verb meaning “to handle or direct with a degree of skill; to treat with care; to exercise executive, administrative and supervisory direction of; to succeed in accomplishing; to direct the professional career of.”
There are other uses as well. As an intransitive verb, manage means “to direct or carry on business affairs; to achieve one’s purpose.”
I have always said I cannot “manage” a progressive neuromuscular disease. I cannot handle or direct with any degree of skill the manner in which my muscles deteriorate.
But, I do strive to treat myself with care. Certainly, I know I exercise executive, administrative and supervisory direction of my life. I have shown success in accomplishing and directing a professional career for two decades. I most assuredly direct or carry on business affairs. I manage my Personal Assistants (PAs) on a daily basis to achieve my purpose of living what I consider to be a good quality of life in a body which does not always function as I wish it did.
Yes, my progressive neuromuscular disease is going to progress as it will. I have no control over it and cannot manage that part of life.
However, I do my best to live a healthy lifestyle, get adequate sleep, eat nutritious food – all things which in theory should help me function at my best. I use technology to my advantage to be as physically active as possible in my community – an elevating wheelchair, an electric hospital bed, a modified van and more.
There is not an approved drug treatment which will slow the progression of my disability. Physical therapy and stretching may help slow the progression of joint contractures and muscle atrophy, but insurance will not pay for continued “maintenance” treatment which is not “restorative.” There is technology which improves my independence. I communicate with my PAs using text messaging, eliminating the need to wait for a return phone call when I am looking for a back-up to help me get in or out of bed. The emergency response alert system allows me to call for assistance with the touch of a button. Yes, I have one of those “I’ve fallen and I can’t get up” bracelets. I don’t wear it, but it is next to my bed should I need to summon help when I am alone at night.
I wrote about “managing” life as a person with a disability last year for the AbleBodies blog. In that post I wrote how I view managing as merely making choices in life.
All of us, no matter our physical ability, are given the opportunity to make choices. However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices. The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider. The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.
We all make choices to help us “manage.” Everyone adapts to the abilities they have and makes life decisions for a variety of reasons. I choose to focus on making choices which maximize my ability to engage in the activities which are most important to me. Whether or not anyone else agrees with these choices, they are my choices. It is how I manage.