The Redefining Disability Project Post #2– On Definitions

When I was younger I adamantly disagreed that I had a disability. I had hypermobility syndrome and fibromyalgia, however, while these conditions made some things difficult I coped well. I had limitations. I had moderation. I did some things differently. I altered my methods. Yes, it would always affect my job choices. No, I never claimed I had a disability when asked at work on forms. Never stated so on any form. Except disability insurance forms for my house and so forth, which I can never get because of fibromyalgia by the way. All because disability is negative. I have a syndrome. I have a condition. I have to adapt.

Now, then, when I developed chronic migraines which are comorbid with fibromyalgia and hypermobility syndrome (A brutal little trio I have developed) I altered my opinion on my status. I still believed the word disability is negative by societies standards. It was not a label I wanted to take on. However, the pain was then not a limitation that I needed to adapt to and moderate my life style… it was something that ruled my life. It ran the game. It controlled the rules. There was very little me in there at all. And when it became like that I realized I am disabled by the pain. Not. Able. And, yes, even without the label of disability I have experienced a great deal of stigma in my time regarding my health in general society and with medical professionals. So what does the label then matter? Stigma comes either way. The expectation that pain is something to just be endured will be there whether I say I have a disability or not.

In fact, I do not believe the word should have negative connotations at all. I would say I have always had a disability and that my ability to adapt to the world was how I lived in the world with my condition. Something people with disabilities do all the time. In fact, I would say my capacity to not adapt came from the lack of disability awareness, treatment and accommodation. If I could not work in a way that worked for me, then I could not work. And if I could not be treated, then the pain level would remain as it was. Now I am going to a pain clinic with the best results they hope to produce is that I will be able to attain some sort of part time work. It sort of boggles my mind that this is sufficient and yet adapting my previous work place to my needs, in minor ways, was beyond the capacity for my employer to comprehend because my ‘disability’ was not ‘physical’. Pain, you see, is apparently just pain and not like giving someone a ergonomic keyboard and calling it all good. If disability were just seen as ways to Be in the world, different ways of existing, then it would be a matter of course to let people adapt in the ways that make them the most productive. Alas, disability is seen as a weakness. As a limitation. As the weakest link in the chain of employees. As something you need to ‘accommodate’ for. Dreadful! Someone that is a liability and not an asset. I recall that my employer loved to give me ultimatums in hopes I would spontaneously cure myself, which suggests to me she believed it was not as severe as it was despite all medical evidence to the contrary. She also suggested I cut my hair, because everyone knows with migraines all that hair is such an issue!

I wonder what the world would be like if those of us who desire to work but cannot find positions flexible enough to our needs could all do so. Think of all the value there. All the productivity. The reason I have always been hired for positions is because I look awesome on paper. I am intelligent. I have a great work history; although now there is a gap which will do me no good at all. I have a Masters. I excelled at my previous job despite the pain. Yet, when the time comes for me to return to work I will be looking for part time, simplistic, available work because flexible, interesting work is not an option. I wonder just how many people out there who have disabilities like mine are allotted into available part time work because industries adamantly refuse to accommodate people with different disabilities. My previous employer refused to accommodate me in any way but it should be mentioned that had I been in a wheelchair I never would have gotten the job in the first place as the office was not wheelchair adapted and the bathroom, meeting room and lunch room where all downstairs. I wonder what excuse they would have given that person? Apparently there must be an excuse made per disability. Mine, not physical enough to accommodate. A wheelchair… too physical?

So, in my opinion, disability will be seen as a negative concept as long as we are seen as a liability in the workforce and not an asset. If they are forced to hire someone and forced to accommodate them, then are still seen as a liability. Someone who is weaker. More prone to illness. More prone to permanent disability. Why put any effort into them when they may not be long term? What we are actually capable of and our actual productivity is Minimized in the face of our perceived lack.


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