In the disability community, which is as diverse and broad as any other, there is a debate over terminology. I have seen this play out on my Twitter account and in other places. I have also seen some very strong feelings on all sides.
The muscular dystrophy community has entered this debate — and with good reason. There are almost 60 different types of muscular dystrophy, and symptoms can vary. Being an optimist, I focus on each individual’s abilities. Learning to power through disabilities by living creatively is my goal.
With this said, I want to be clear that I have some definite thoughts and preferences. In my opinion, there is a big difference between “being disabled” and “having a disability.” I would like to hear your thoughts on the subject.
Let me explain the dilemma. I worked for many years as a licensed clinical counselor and a life coach. The diversity of abilities and capabilities among humans is huge, but the variety of what I term disabilities is also broad. I am not talking here about the societal definition of disabled or the term used for medical or legal purposes. To make that clearer, let’s call what I am referring to “dis-abilities,” or “un-abilities.” Using this terminology, we begin to see the dilemma.
I am someone who has trouble with spatial tasks. I am always thankful for the development of GPS on our phones. Without this amazing tool, I would have some trouble getting from place to place in my travels. Because of this characteristic alone, would society say I’m disabled? Of course not. I have a dis-ability, but I am not disabled. I have many abilities that help me overcome the un-ability of not having great spatial skills.
Let’s work through a task: Make a list of your strengths and weaknesses. I will use myself as an example, and then I’ll come to some conclusions that seem clear to me, but you may disagree with.
First, think of the things you can’t do. For me, these include going up or down stairs and getting out of certain chairs. Walking is fairly easy, and on flat terrain I can walk a good mile or more, but I can’t run. I can swim, but it’s hard to get in and out of pools or oceans.
What things are on your list? To say you are a disabled individual implies that these things represent the totality of who you are as a person. I would find it hard to make such a totalizing statement about myself. I can balance all my abilities and dis-abilities as a complete person.
Take some time to think about your abilities. This is an important step. I’m especially good at math and science. I am focused and well-organized. I can develop plans and map out jobs and budgets over years. I can run an organization and lead others. And sometimes, when I’m lucky, I can write a little.
I’ve known people who can run up stairs, jump over walls, or swim for miles, but struggle with maintaining an organized life or a balanced budget. They don’t define themselves by their lack of skill. Yet, there are those in the disability community who would rather identify themselves as disabled rather than say they have a disability.
There is power in words. As a psychotherapist, I saw clearly that negative self-talk is the biggest dilemma we deal with when battling our own psyche. Do you want to say that despite being a person with so many skills, you consider yourself a disabled person? Or would you rather focus on the great strengths you bring to this world as an able person?
You have disabilities. I have disabilities. I had disabilities even before I started having symptoms of LGMD2L. But I can tell you this: I will never be disabled.
As I’ve said, these opinions of mine are not shared by all. In fact, some leaders in the disability community see it differently. I would love to hear your thoughts.
Next week, I’ll take this idea a step further by discussing how to attain positive thinking.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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