“Will you end up in a wheelchair?”
If I had a dollar for every time I heard someone say that since my multiple sclerosis (MS) diagnosis 13 years ago, I’d have enough cash to buy an Alinker. More on that later.
Despite 13 years of anecdotal proof from knowing many people living with MS who aren’t using wheelchairs, the general public always seems to think that’s where this whole MS journey leads.
And the term “end up” in a wheelchair is less than favorable, right? Like the same way you “end up” doing chores on a Sunday afternoon, or how you “end up” with a flat tire after hitting a pothole.
Yikes, man. It’s no wonder that people with MS, like myself, live our lives with this fear wrapped in disdain topped with judgement when it comes to the idea of needing a mobility device.
But I say screw that.
I don’t currently need a mobility device. My legs work just fine and are still pretty strong, but I’ve discovered that, if I use one, it has a huge impact on how far I can go or how long I can do whatever I’m doing.
It’s made me start thinking about mobility devices, even though it feels icky — which is the scientific term for something that society has taught you to fear and be ashamed of.
The “ick” is what I feel when I think about how my self-worth could be affected if I start using a mobility device. Then it gets amplified from the guilt I have for even thinking such an ableist thought.
It’s shameful that even as an activist for disability rights, I can’t always escape this ingrained hostility toward people with physical disabilities.
So, I’m giving myself permission to test out mobility aids without my own judgement — which is actually enabling me to not care about anyone else’s, either.
It’s kind of this amazing experience where you dabble in the thing you might need in the future, just to see how it feels while you still have the choice.
Which brings me to the Alinker. If you’ve been keeping up on MS news, you know by now that Selma Blair has MS and she’s beboppin’ around town on an Alinker, which is a mobility bike to be used in place of a wheelchair or walker for those who still have full use of their legs.
It’s completely revolutionary when it comes to mobility aids. It puts you eye level and provides support to keep your own weight off your feet and legs. I really wanted to try one, but these babies aren’t sold in stores. So, I contacted Alinker and asked how I could test one.
And wouldn’t you know, there was a lady who lives 10 minutes away from me that offered to let me borrow hers for two weeks. Thanks, Universe, for making exactly what I wanted to have happen, happen.
I got on the Alinker, which was too big for me, so I put on some wedges and hit the road — and then I fell in love with a walking bike that’s $2,000.
My husband and I like to take walks at night, but depending on the day I’ve had, sometimes our walks are much shorter than I’d like them to be. When I had the Alinker, my fatigued legs were no longer a nemesis, and I could keep pace with him for as long as we wanted to walk.
My Alinker experiment got me thinking: Where else in my life could I use a mobility aid that would enable me to do things better, even though I can still technically use my legs regularly?
As someone who currently straddles the line between able-bodied and disabled, I spend a lot of time thinking about when I may need physical support — and the discriminatory shame storm follows not far behind. It’s a narrative I know I need to challenge, but it isn’t easy in a society that already can be so hostile toward disabled folks.
So, I decided to work on accepting it before this becomes a permanent part of my life. And that means being willing to be uncomfortable as I test mobility aids, while also understanding the privilege I have in this scenario.
The next place I tried was at the airport. I gave myself permission to use a wheelchair transport to my gate, which was at the end of the earth, aka the farthest gate from security. I recently saw a friend do this, and it’s something that honestly never crossed my mind.
However, a walk this long usually has me on empty by the time I get to my gate, and then I have to travel and do it all over again in a few days to come home. Travel is exhausting as it is, so if using a wheelchair can help, why not try it?
So I did. And it helped. But I almost talked myself out of it on the way to the airport and while I was waiting for them to pick me up.
In a wheelchair, I felt like I was about to amplify my “disability” to the world, putting it out there for everyone to see and judge.
Kind of like when you park in the handicapped spot and the second you get out of your car, you feel like you have to start limping or something to prove you really do need that spot.
Instead of wishing a broken leg on myself, I remembered I was testing this out. This was my choice. And immediately I felt the judgement I had manifested in my own head start to lift.
It’s easy to think of using a mobility device as giving in, or even giving up. That’s only because we’re taught that anything other than your own two feet is “less than,” not as good. And that the moment you seek support, you also show weakness.
So, let’s take that back. Let’s dabble in mobility devices, even when we don’t need them every day.
I still have quite a few years ahead of me before I really need to consider regularly using a mobility device. But after testing a few, I’ve realized that you don’t need to lose complete control of your legs to find them useful. And that was powerful for me.
Jackie Zimmerman is a digital marketing consultant who focuses on nonprofits and healthcare-related organizations. Through work on her website, she hopes to connect with great organizations and inspire patients. She began writing about living with multiple sclerosis and irritable bowel disease shortly after her diagnosis as a way to connect with others. Jackie has been working in advocacy for 12 years and has had the honor of representing the MS and IBD communities at various conferences, keynote speeches, and panel discussions.