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It's Time to End the Stigma Around Mobility Aids

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Due to injuries from my Ehlers-Danlos syndrome, and dizziness from my postural orthostatic tachycardia syndrome, I often have to use mobility devices. So far, the two devices that I use regularly are my rollator and my wheelchair. For those who don’t know, a rollator is essentially a walker on wheels. It helps support you while you walk, as a walker does, but it rolls with you as you move so you don’t have to pick it up like a traditional walker.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

A lot of people who need mobility aids are afraid to get them. I was, at first. And, even though I’ve had both my rollator and my chair for over a year, I still get nervous and anxious about using them in public. My devices, which I named “Blue Steel” and “Big Red the Rollinator,” have helped me tremendously. They’ve allowed me to go places and do things that would have otherwise been impossible. We often hear the phrase “wheelchair-bound,” but that doesn’t ring true for me. The use of the word “bound” makes it sound like I’m a prisoner to my chair, when, in fact, my chair gives me more freedom than anything else.

Yes, I love my mobility aids and think anyone who needs one should get one. However, I want to issue a warning as well: There is a stigma around the use of assistive devices.

For many people, getting a wheelchair, walker, cane, or rollator, is considered giving up. It’s seen as admitting defeat to your disability and deciding that this is who you are now. Well, guess what? Whether I actually use my rollator or not, I’m still that same disabled person who needs one. The difference lies in whether or not I’m going to allow myself to suffer to make someone else feel more comfortable with my situation.

If you are getting a wheelchair or a rollator, or really any kind of medical device, be prepared for odd looks, bizarre comments, and just ableism in general. When I use my rollator to help me get around the large building that houses my gastroenterologist’s office, or to help me get around a large restaurant, I get stares and whispers. But, you keep on rolling or strolling with pride.

There will also be people who make assumptions about you. For instance, I recently attended an event in my wheelchair. I was accompanied by some family friends who gave me a ride to the event and helped push me around. As we entered the building, we were greeted by a woman who kindly showed us some options for where we could park my chair. She then turned to my family friend and said, “She’s so beautiful.” It was dripping with the specific type of patronizing that is backed by a feeling of pride as the speaker believes they are showing how tolerant and loving they are, while they’re actually being very prejudiced. She then turned to me and slightly slower said, “You are so beautiful.” All I managed to mutter out was, “Uh, thanks.” Had we not been in the middle of a solemn event, perhaps I would have confronted her about her blatant ableism, but I decided to let it go.

So, yes. While in my chair or using my rollator, people have often talked slower or in a “child friendly” voice. There are others who stare at me with pity as I go about my day, not looking particularly pitiful, in my mind at least. There are many who won’t look at me at all, unsure of how to handle seeing a disabled person out in the wild. They ignore me, look around me, or simply talk to whoever is with me as if I have no authority over my own life. Or, talking over my head when I’m in the wheelchair. There are people who roll their eyes, as if any 31 year old with functioning legs who uses an assistive device is obviously just seeking attention. I have received a wide variation of reactions to my use of assistive devices. The least common, but my absolute favorite, is when people treat me like a regular ol’ human being like anyone else who just happens to need to use assistive devices.

Not everyone will understand your need for such a device, or approve of you using it, but use it anyway. I have heard many people in my various support groups lament over how they wish they could go to certain places or do certain things, but they don’t want to use a necessary device because of the stigma or how people treat them while their using it. And that breaks my heart. Society already limits us in so many ways, judges us as lazy or fakers or burdens, it is an extra dose of cruelty for then judging us for using devices that actually allow have some sort of independence.

I know this is easier said than done. I talk big, but I still feel hurt when I hear people laughing at my compression socks or giving me sideways glances for using a rollator. I cried when I had to give a graduation speech for my students from my wheelchair. I cringed as photos were taken of my while in my chair, angry that that was how I would be remembered. I have pushed myself too hard and too far because I was afraid of what people would think when they saw me with my chair or rollator.

These fears stem from the stigma that disabilities are shameful and should be hidden away. You shouldn’t accept your disability as part of who you are, because disabilities are automatically considered negative so claiming your disability is thought to be pessimistic and bad. It also comes from a fear of being thought of as weak, because we are told that disabilities are weaknesses.

Disabilities aren’t shameful. Disabled people don’t need to be hidden away or kept in the shadows. We shouldn’t be made to feel embarrassed by our canes, walkers, wheelchairs, or rollators. They don’t highlight our weaknesses, they add to our strengths.

My devices are so much more than mere equipment to me. They are my independence, freedom, and security. They are like old friends, welcoming me every time I turn to them, and supporting me through even the most difficult of challenges. They aren’t fancy, or fashionable, but they are mine and I am incredibly grateful for all that they give to me.

Get whatever device you need and use them proudly. Tell the naysayers to shove off, because you know the truth. Let your device be your secret weapon, rather than an anchor weighing you down.

Follow this journey on Spoonie Warrior.

Thinkstock Image By: Antonio_Diaz

Originally published: September 20, 2017
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