How We Can Address Disability's Image Problem
My mobility aid epiphany didn’t happen overnight; there was no aha moment when I was suddenly OK with multiple sclerosis taking over my body and my ability to walk independently. The transition from relapsing remitting MS (RRMS) to secondary progressive (SPMS), was hard. Is hard. Even now after having reached some degree of acceptance, there are days when I have no chill about how badly I don’t wanna be someone who needs a mobility aid.
Accepting mobility aids into my life and baptizing them with cool names was only half the battle. Turns out there’s a whole world of stigma associated with walkers, wheelchairs and canes that I’d never considered back in the days before I’d needed them. It’s a stigma that’s warped most of us into unconsciously associating mobility aids with some pretty demeaning words. Words like weakness, less-than, burden, victim, other.
I’m not gonna name names, but someone recently told me it was a blessing their relative hadn’t survived a heart attack because he would have needed a wheelchair, and this guy would never have been able to handle that.
Though I eventually realized that using mobility aids didn’t mean I was accepting some kind of personal failure, I still couldn’t get past what needing them said about me. I didn’t want people to see me “like that.” I shoved my devices out of photos. I decided I’d never use a cane in our apartment, believing I was somehow tricking The Banker into thinking I remained relatively healthy. I was convinced that looking fall-down drunk was still sexier than looking disabled.
Yeah, I’m that vain.
But The Banker is no fool. I looked drunk and disabled. After my fair share of freak-outs, there came a point when I knew I needed to get my shit together and wrap my mind around my new identity.
Feeling disempowered and less-than is so not my jam.
During this self-indulgent existential crisis I found myself walking in my ‘hood, cane in hand, when I came across a guy about my age. He was wearing a fedora, and somehow didn’t seem like a douchebag. Like me, he was using a cane. I noticed his drop-foot and I know he noticed mine. We gave each other a knowing smirk as we headed in opposite directions.
I found myself thinking about Fedora for days afterward. Thinking “that guy seemed cool.” He looked like someone I could be friends with. And then it struck me. Like, duh. If that guy looks cool with a mobility aid, maybe I look cool too. I realized the key to accepting my new look was in seeing the people who look like me; in seeing the people who look better than me.
|If I had seen her, would I have been so scared to start using a cane?|
With this in mind, a few weeks ago I spent the day playing dress up with photographer extraordinaire Alkan Emin and his team. I’m tired of waiting to see myself represented. I’m tired of society getting it wrong. I’m tired of fighting my own f***ed-up associations with mobility aids, and I’m tired of hearing others like me say these f***ed-up things about themselves.
|Mobility aids are tools, like eye glasses. Only nobody ever tells you to ‘just try harder’ when you need glasses.|
And then just last night, as I was heading into the Radiohead concert with Titus Andromedon (my sassy new rollator) in tow, I was rushed by a young guy who just had to know where my slick set of wheels had come from. He explained that his wife Lisa has MS and “she’s so embarrassed.”
Oh hell no.
Lisa’s husband could see that I was one of the cool kids, and God bless him for how much he wanted his wife to feel like a babe while using her own mobility aid. My head was exploding, but I didn’t have time to tell this guy how much I get it, because Thom Yorke was waiting for me. So instead, I said, “Let me give you my card,” and Lisa’s husband was like, “Uh, what? You have an I have MS card?”
Suddenly I was no longer cool.
|Just kidding, guys. Look at me!|
Despite what my Instagram might lead you to believe, I still battle these feelings of not fitting in. There are only a few fashion magazines, glossy ads, and style icons providing examples of how to rock this look, let alone how to make this look OK. And that is why my social media is littered with shameless selfies declaring #babeswithmobilityaids. Every day I make the choice to not only believe in this bad-ass version of myself, but to declare it to the world and champion others like me to believe in the best versions of themselves. I use #babeswithmobilityaids because I realize that if I want to see those people who look like me, those people who look better than me, I have to put myself out there too.
|a thousand empowered words|
We need to change the story about disability, for ourselves and for each other. Disability representation is coming, but we can’t wait for media to catch up. Disability has an image problem, but social media gives us the platform to use gossip for our own good. We can be the biggest PR firm in the world, rebranding mobility aids so that when we see those who use them, we don’t see stigma, but strength, resilience, independence, perseverance, ownership, pride, ability.
I want to see all the #babeswithmobilityaids. I want to see Lisa out there living her life and seeing herself the way her husband sees her.
I want to see you. And I want you to see me.
All photos by Alkan Emin Photography.