The Person Who Decides If You Need a Mobility Device Is You

The Person Who Decides If You Need a Mobility Device Is You

guest post by Mary D’Rozario

Two years ago, I had never heard of a part-time wheelchair user. I didn’t know that the vast majority of people who use wheelchairs – about 95% – can walk to some degree. I didn’t know that wheelchairs are so darn inconvenient that even when accessibility is good (and it usually isn’t), there is no way a person is going to use one more than they absolutely need to. I didn’t know that about 1 in 50 people my age uses a wheelchair at least some of the time.

The first time I used a mobility device was when I had foot surgery as a teenager. Before the operation, I was sent to a dark basement in the hospital to pick up the crutches that I would use afterward. When I showed up for my first follow-up visit holding my foot in the air, the doctor yelled at me for using the crutches he had prescribed. Apparently they had been meant for just the first few days after surgery.

The thing is, I had metal pins sticking out of my foot that made it hard to walk for three months and I still had to get to class on time. The doctor had no sense of what I needed crutches for in real life. Not using them at all would have required dropping out of college. This wasn’t the last time a physician’s carelessness about my mobility needs would have meant dropping out of college if I had followed their instructions.

Fast forward to the summer of 2018 and now I’m in my forties. I was walking to the laundry room at the RV park where I was staying when my legs became unstable. This was not a completely unexpected development in my illness, but I wasn’t sure what to do. Despite experiences going back to the foot surgery, I still thought that if you needed a mobility device a doctor would tell you.

As the neurologic symptoms of my illness had progressed I had developed slow walking, chronic fatigue and lightheadedness, but my mobility needs and safety were never discussed. I was told that since I knew when I was going to pass out before it happened that I was safe to drive and had no other needs. No doctor ever addressed how I bought my groceries or got to work or what would happen if I passed out in a dark alley.

My doctor adjusted my medication and my legs got steadier, but now I had wheelchairs on my mind. I learned that they aren’t locked up in hospital basements. They are kept in stores where anyone can walk in and buy one. I didn’t need anyone’s permission to make my life better except my own.

[socialpug_tweet tweet=”I don’t need anyone’s permission to make my life better except my own.” display_tweet=”I didn’t need anyone’s permission to make my life better except my own.”]

I needed a mobility scooter or lightweight motorized wheelchair because of my fatigue. After some research, I decided I wanted a scooter with a battery that would keep going for as long as I could. Because I live in a travel trailer, it needed to fit in the back of my SUV. There are not a lot of authentic consumer reviews of specific models of devices available, so I wasn’t sure what brand I was going to buy.

When I tried them out, I found that comparisons from anyone else didn’t really matter because one brand had a seat that fit me best. These factors narrowed the selection to the Revo Pride 2.0. I purchased one in grey and named it Biscuit.

The name fit because the previous year I had moved into a 16-foot Airstream travel trailer called the Halfloaf. The travel trailer got me out of a house that I could no longer manage and allowed me to winter in Florida to treat my Seasonal Affective Disorder. I wrote a book about the decision to move into the travel trailer and my first year of travels called The Airstream that Ran Away with the Spoon. The book ends just as I was considering buying my scooter.

In the month after I bought the scooter the FEI World Equestrian Games was going to be held in North Carolina. Top horses and their people were flown in from all over the world in the biggest horse airlift in history. With my Airstream, I could stay near the event and now that I had my scooter, I would be able to actually attend. I was going to try the scooter before the big day, but the days slipped away and I didn’t get it done.

I could go to the art museum and take out the scooter, but I was afraid people would look at me. No doctor had told me to buy a scooter. I was a fake, a fraud. People would know. I could go to the mall, but what a drama queen. How ridiculous that I own a scooter when I can walk! Even worse, I would be a fat woman on a scooter.

Finally the day of the big event arrived. I had never once used the scooter, but there was no way I could go see the beautiful horses without it. When I got to the event, I found that the promised disability parking was a mud pit. The accessible buses were not accessible. I could turn around and go home, or I could make my problem their problem.

I was not going home, so instead I explained to an employee that we had a problem. These fabulous men loaded up my scooter parts onto a golf cart, drove me through the muddy parking lot, and forced a VIP event van take me. There were additional frustrations I would learn to expect, but I was there, I was comfortable and not afraid, and I had a great time.

After the horse event, I started using the scooter at the grocery store on days that I needed to. I took my scooter to the Miami Book Fair, the biggest book fair in America. I went to museums. I felt safer driving because if my car broke down I could go somewhere else to wait for help in a safe place.

Here’s the thing. Medical silence and obfuscation contribute to shame about mobility devices, and shame is a liar. Shame over needing accessibility options tells you that you don’t deserve to do things that other people do. Twice I was told by doctors that I didn’t deserve to go to college. Shame tells you that you can’t ask your friends and relatives for help if you cannot afford the mobility device you deserve. And that’s just not true.

[socialpug_tweet tweet=”If someone were to tell me that I don’t need my mobility device, they would be saying I don’t deserve to go to large events.” display_tweet=”If someone were to tell me that I don’t need my mobility device, they would be saying I don’t deserve to go to large events.”]

If someone were to tell me that I don’t need my mobility device, they would be saying I don’t deserve to go to large events and fairs. They would be saying that I deserve to be afraid of falling down when I stand in line. I know those things are not true. I didn’t know that before I bought a scooter, I didn’t know that for all those years I didn’t go to events, but I know it now.

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Mary D’Rozario is a fulltime RV’er and part-time mobility scooter user. In 2019, she published The Airstream that Ran Away with the Spoon about moving into an RV to better manage life with chronic illness and chronic fatigue. Mary works in the field of clinical research and healthcare communications.

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