It is an interesting question is it not? I have worked with people who have multiple disabilities for many years of my adult life. When I stopped working due to wanting to stay at home with my children, I soon discovered that my youngest son had autism. And so my work continued as I strove to teach my son how to navigate the world despite having a disability.
As much experience as I have with my years of teaching both children and adults with a wide range of disabilities, the term “disability” still puzzles me. Perhaps it is all the more confusing to me now as I have this diagnosis of Multiple Sclerosis. MS in and of itself is not a disability as far as I know. But the disease can be disabling.
The American Heritage Dictionary of the English Language defines disability as “a disadvantage or deficiency, especially a physical or mental impairment that interferes with or prevents normal achievement in a particular area, or something that hinders or incapacitates.” Okay so that is one general definition. But ask anyone who is going through the arduous process of getting insurance to pay for certain therapies based upon a disability, or is attempting the herculean feat of trying to obtain social security disability, or is trying to obtain a handicapped parking permit and they will tell you that there are some very strict definitions of the word “disability.”
In case you are interested in these various definitions here are but a few:
- You may find The Social Security Disability definition of what constitutes a disability here.
- There is also what is known as the Expanded Disability Status Scale which is a special measure devised to quantify and classify your disability due to Multiple Sclerosis. You may find more information about this scale here.
- There is also the definition given by the Americans with Disabilities Act of 1990 (ADA) which doesn’t seem to distinguish between the type, severity, or duration of the disability. Here is what they say:
_ "The term ‘disability’ means, with respect to an individual_ -
(a) A physical or mental impairment that substantially limits one or more of the major life activities of such individual;
(b) A record of such impairment; or
© Being regarded as having such an impairment (PL 101-336, Sec)"
- The United States Census Bureau and The U.S. Department of Urban Development or HUD gives us yet another definition of the term "disability which you may find here.
In my personal experiences and especially with my son who has autism, it seems that depending upon the powers that be, my son can be too disabled to qualify for some things and not disabled enough (that we have to provide more sufficient proof) for other instances. Off the top of my head I can hear the person’s voice on the telephone line who asked me. “So how autistic is he?” in order to determine if he could be granted the privilege of taking a class in the community. In that case it was deemed rather quickly that he was “too disabled” to fully benefit from the class. But yet when we tried to get insurance to pay for speech therapy (a communication deficit is one of the hallmark symptoms of classic autism) we were denied as this was not a disability they covered for speech therapy. But if he had a simple stutter they would pay.
It is a crazy game isn’t it?
My diagnosis with MS is relatively new (within the past two years) and I have not had to prove my MS to anyone yet. MS makes things tricky and especially if you have Relapsing Remitting Multiple Sclerosis. Do I consider myself disabled? The answer is “No” in most instances. But there have been times where I have lost my ability to walk or to speak and sometimes to think. And what about the unpredictable but debilitating fatigue which can hinder us from doing our day to day routine? What is to be done with the likes of us who only intermittently lose our capabilities? I do not know.
And then of course there are the personal definitions one applies to the word “disability.” I have always viewed disability as a reason to make adaptations. My hopeful perspective is that a disability makes it harder but not impossible to navigate life’s routines. Perhaps under my broad definition most people might consider themselves to have a disability at one time or another as we all have challenges which cause us to alter our path. But of course there are degrees of challenge and of adaptation. While I only periodically lose my motor skills, there are some who must consistently rely upon a walker or wheelchair in order to get around.
Through necessity, a disability changes one’s perspective. The individual who cannot walk without falling down views the ground in a different way than one who seldom finds themselves face down and dirtied after losing their balance and falling for the hundredth time. The ease of going in and out of stores to make simple purchases is seen from a different view entirely for the person who is wheelchair bound. Cooking, cleaning, and taking care of children can be seen as a huge challenge for someone who finds it difficult to get out of bed in the mornings due to disabling MS fatigue. But when do we call it a “disability”? Is it when someone grants us the legal status? Is it when the doctor advises that you should no longer drive? Is it when you realize you must cut back your hours of work or even quit your job? Or does it begin the first time you reluctantly ask for help to do things you once accomplished without any effort or reflection?
DISease and DISability are hard to swallow aren’t they? I would much prefer “ease” and ability myself.
And now it is your turn to tell us your thoughts. How would you define the term, “disability”? Do you consider yourself to have a disability? Have you ever had to prove your abilities or disabilities to others? We want to hear your thoughts
I am a mother, a writer, and now an MS patient