Is disability a category? Is it a group with membership? An island where you belong or never understand? I say no. In a way, everyone has disabilities. We all have limits. Some people cannot tolerate spicy foods. Others cannot sing, or dance, or win an Olympic gold medal. Doesn't this mean we have dis-abilities, areas of weakness? Sure. We all have challenges. And limits. And how we handle them tells a lot about us.
In that way, disability becomes a spectrum and we all fall along the spectrum. The same idea holds true on the Autism Spectrum. We all fiddle, and have obsessions and miss social cues now and again. But it reaches a certain point where the balance tips. Where the spectrum changes.
I was born with Charcot Marie Tooth. But if you had asked me in my twenties, or even five years ago, if I had a disability, I would have answered no. Quite strongly, too, because disability was an emotionally charged, undesirable place to be. Was I making accommodations in my life in those days? Yes, plenty. But I did not perceive them as life-altering or important.
Only when I had a sharp progression and degenerative symptoms did I even think of the word disability. After all, we should fight not to be have disabilities, right? We should overcome disability, right?
For me, that is when the balance tipped. Instead of living with accommodations, I had to figure out how to accommodate everything. Limitations became a prism through which I had to cast my every decision. Exhausting.
The definition of disability set forth in the Americans with Disabilities Act (1990), states that “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|
|(c)||being regarded as having such an impairment.” (P.L. 101-336, Sec. )|
The words substantial and impairment stand out as defining words. So when the impairment becomes substantial, then it becomes disability?
Perhaps. I believe that we all have our own definitions for disability. We all land on the spectrum somewhere. And perhaps owning the word, disability, perhaps instead of making it a dismal place to be, perhaps we could see ourselves as moving along the spectrum, and there is a place where you can expect yourself to meet and overcome the challenges. And a place where the world could meet you and make your challenges easier.
It all returns to balance. And when life is tipped towards physical and mental challenges, your abilities become defining factors in everyday decisions. To me, that's when disability becomes part of your story. When your limits color your day.
The choice is how to use those colors. Do you go towards the gray, dark, troubled day or the bright, capable, potential of the day? Is the glass half empty, or half full?
There is also a place on the disability spectrum where the burden of limits become overwhelming. For these people, disability is huge. When pain enters the picture, the whole meaning of CMT changes for me. On days that I am relatively pain-free, my limits are entirely manageable.
But when pain happens to a person, or relationships are troubled because of major needs, or finances go bankrupt, then the positive spin on disability feels contrived. Disability can be a hard, unending journey. And I have no intention of minimizing those very real challenges.
At the same time, I don't want anyone feeling sorry for me. I found an amazing study years ago that asked people with disabilities if they would rather have been born 'normal'. Many answered no. Why? Because the disability was a major part of themselves. The problem wasn't with them, it was how other people perceived them. They didn't feel less, or broken, or damaged. Separating the disability from their life experience was a stretch of the imagination.
And again, I'm not talking about painful or severe disabilities. I'm talking about lifelong limitations and/or accommodations. For myself, I wouldn't change a thing about my life (except the pain, and don't ask me on the rough days :)). Even then, having CMT has shaped my life. And if not having CMT meant that I wouldn't have this amazing life with my husband and incredible children, then no way . . . I wouldn't change a thing.
Adding to that perspective, we can all feel sorry for one another in some way. An Olympic ice skater can feel sorry for all of us that we don't know the rush of a triple axel. An artist can feel sorry for everyone who cannot paint the images she creates. A chef can feel sorry for everyone who cannot cook his masterpieces. Technically, everyone wearing glasses has a dis-ability.
We all have gifts. And challenges. And that is the spectrum. Let's hope we can bring out the best in each other. And support each other. And be a society and civilization that changes the world and how we see ourselves in that world. Onward!