I refer to myself as a “person with MS.” To take offense at what others might use for themselves or what tag someone might put on me is just more energy than I’m willing to expend. However, a spate of responses to comments on a recent blog post have me realizing that some of these titles can be weighty burdens, indeed.
I Felt Myself Being Objectified by Others
The Life with MS Facebook page is not a private page. I believe that family and friends benefit from access to our community nearly as much as those living with the disease. That also means that people’s comments on our page can often be viewed by their other Facebook friends. Those friends will sometimes comment back, perhaps assuming that they are making a private comment to their friend. But they’re not, and it must be said that I was uncomfortable with the level of admiration and adoration I read in these replies. I came late to the term “inspiration porn,” as coined by Stella Young, but what I was reading was Ms. Young’s societal objectification writ large. In other words, I was seeing disabled people, such as myself, being objectified for the benefit of nondisabled people.
No One Asked My Permission to View Me as Inspiration
We needn’t be called (or seen as) “heroes” for living our best lives with this disease. I’m not an inspiration because I make it out of the house most days. And you are not to be seen as the object in the “sure I’ve got my troubles, but at least I don’t have MS” rationale. Society has somehow made some of us their well-mannered, trick-performing pets to be admired for putting on our pants and holding down a job. They seem comfortable making us the poster children for their own use and at their own discretion. Nobody gave them permission — well, at least we didn’t — but they took the right anyway. We are not heroes. Not for them, at least.
Inspiring One Another Is a Different Story
We do find inspiration in one another. We learn from each other’s mistakes and successes. We offer up our workarounds and life hacks. We discover, we acquire, we share, we teach, we coach — and we inspire our fellow travelers on the MS path. But that inspiration is with intent and with consent. To be objectified as an inspiration is right out. To be considered someone’s hero simply because we are trying to live as normal a life as MS (and society) will allow is hardly heroic. We’ll not be objectified simply so they can feel that “at least my life isn’t that bad.” Our disabilities do not make us “exceptional people.” If we are exceptional, we are that all on our own. We are people, not perspective. We are humans — flawed and disabled but trying to get on with it. We are not their heroes. Wishing you and your family the best of health. Cheers, Trevis
