MS, Mobility and Erasure: A Problematic Narrative

Y’all. Maybe I’m extra emotional lately, but I read an article (inspiring, really) that once again triggered me. Her story isn’t what triggered me, because it is quite inspirational, but the folks (including myself) that are silenced when peddling this inspoporn (yes, I said) narrative, bothers me. A lot.

The brief article shares the story of a woman with MS who runs, with her husband, in a Marine Corps marathon. She says,“I think a lot of people don’t understand because people do associate MS with a wheelchair and it’s not true.” And she’s right. MS does not automatically mean that one will end up in a wheelchair. I, too, grow tired of the automatic assumption that MS equates wheelchair. It is uninformed. And couldn’t be further from the truth.

That said, what this narrative does too, perhaps unintentionally, is validate the assumption that people with MS who still have the ability to walk are  living their best lives (and in effect living better), and somehow free from the grips of this awful MonSter, and people who use wheelchairs have somehow succumbed to the beast and are…stuck (and the focus of your pity).

It is rare that we hear inspirational stories in mainstream media (I’m not talking about publications geared towards people with MS) about people with MS who use wheelchairs and are living their best lives. We live in a society that values an able body over anything.

MS is a complex and unpredictable disease. Its symptoms can not and should not be viewed hierarchically. They are all awful.

Does someone who is able to walk unassisted, but suffers from acute and long term memory loss and cognitive issues somehow live better than someone, who because of spasticity or paralysis, uses a wheelchair, but lives life free from cognitive issues? Of course not. They are different chapters in the same book. 

People who suffer with MS should not be (innocuously) shamed because the way their disease has manifested itself scares people or makes folks uncomfortable. Our lives are just as meaningful, and should be celebrated as such. I am talking to people with MS, too. Some of y’all are guilty of this.

Lets not rank people’s MS successes by how well they maintain their physical abilities. It dishonors the experience of all MS Warriors.