When you’re a part-time user of a mobility device, people seem to get confused. Someone might see me in a scooter one day, then see me walking the next and congratulate me on my miraculous recovery. The more cynical might accuse me of faking my disability. Quite frankly, I’m tired of explaining it several times a day, so I’m writing this blog post as something I can send people to read on their own time so we can talk about other things when we’re together. At the bottom of this mythbusting post where I address things I have heard at least a dozen times, you will find links to blogs of other part-time wheelchair and scooter users so you can start recognizing and combating the misconceptions and myths society has about people who use mobility devices.
Myth #1: You don’t need a wheelchair or scooter if you can walk at all
As of this writing, I can walk 0.4 miles at a time (each time spaced by a long seated break and a total of 2-3 times per day) without excruciating pain on a good day. On a bad day, every step hurts. I’m not a fan of sitting, so I generally choose to walk as much as I can bear. I plan my trips carefully, but if I know there’s going to be a lot of walking or standing (Disneyland, a museum, trips across campus at school) or if I’m not positive what the walking demands are going to be, I bring a scooter or wheelchair. When I don’t, I end up stranded sometimes for hours as I wait for it to be possible to put pressure on my foot again. When I overdo it, the pain can be constant for weeks, the throbbing keeping me up and night. So, yes, I can walk and stand, but, no, I can’t do it for very long. If I don’t want to spend every day cooped up in my house, then I need a wheelchair or scooter to get around some days.
Myth #2: If I can’t see your disability, you’re faking it.
My disability is largely invisible. When I walk, I only very rarely limp (usually when I’ve walked too far or immediately after getting up from my scooter or wheelchair as my ankle gets stiff in the footrest position). If I’m walking with you, you may be surprised when I suddenly have to stop to sit and stretch before moving on, but it is no surprise to me; the pain gradually builds as I walk, and I’ve learned that if I let the pain grow past a certain point, I could pay for it in lessened mobility for days or weeks. When I say I have to stop, I have to stop. I can’t keep going for another block or suck it up. You are welcome to keep going; I honestly do not mind and will catch up with you when and if I can.
Myth #3: You aren’t disabled enough for a parking placard
My pain is cumulative, so every step I take on a given day counts. If it’s in the morning on a good day and I don’t plan to walk much that day, I will not take up a handicapped spot. If it’s in the afternoon and I’ve been walking, I generally will. Obviously, I always do when I have my scooter or wheelchair as I need access to the ramp and the extra space for assembly.
Myth #4: You’re too young to have a disability
This is probably the number one comment I get, and it makes no sense and is incredibly insensitive. Some people are born with their disabilities. I was lucky to develop mine after 36 very mobile years. Telling me I’m “too young” to have mobility issues is a great way to remind me how much of life I’m missing out on. Please stop saying this to people.
Myth #5: You can use a scooter, but you’re not disabled enough to use a wheelchair
You know what? I kind of fell into this trap, too. That’s why I got a scooter without even considering a wheelchair at first. Here’s a fact, though: scooters are awful for cardiovascular health. I gained a bunch of weight and lost endurance when I stopped being able to do my favorite exercises, and even more because walking around school incessantly ceased to be a major part of my daily life. A scooter is amazing for independence and staying social, but it’s just sitting. Now I swim and can use a recumbant bike, so that helps, but the loss of hours a day of walking is a huge hit to my health. A manually-powered wheelchair, though, allows me to be active without aggravating my ankle. Also, at least until I improve my upper body strength, it’s really challenging in a way no other exercise I can do is.
Myth #6: You don’t deserve discounts on public transit passes
Mobility devices are expensive and require servicing. I work full time, so I receive no help purchasing those devices, and I am too mobile to have them covered by my insurance. My scooter cost $1,400. The simple wheelchair I’ll be purchasing soon, $1,000. The scooter I want for travel is $3,000 (I can’t take my current scooter on a plane). Renting scooters and wheelchairs, $10-$50/day. The wheelchair I want so I can hike again costs around $5,000. Orthotic shoes cost about twice the price of normal shoes of similar style (and tend to be ugly). For me to have a fraction of the mobility and freedom an able-bodied person does, it costs money, and let’s not even talk about how the copays for treatments add up. The modest discount most public transit systems offer people with disabilities can help us pay for staying mobile. I accept that kindness gratefully.
Myth #7: You’re lucky to get to sit all day
This is another comment that boggles my mind. I don’t want to sit. I hate it. Not having options is actually pretty hellish. You may be tired and want to sit down, but please don’t phrase that as, “You’re lucky to get to sit all day.” I wish I had the option to stand and walk as long as I wanted or needed to.
Also, there are many inconveniences that come along with this sitting. The stigma with the scooter is that I’m just lazy, so people feel free to jump ahead of me in line, cut me off (these breaks are not the best, people), or load into an elevator I’ve been waiting for longer than they have, leaving no room for me.
In a wheelchair, I’m treated more kindly; that is, until I leave said wheelchair to go to the restroom, get a better view of something, or simply stretch my legs and walk for a bit. Then I’m the faker that tricked them into being polite.
If that isn’t enough for you to lose your envy of my situation, then I’ll leave you with this: in a crowded place, seated people’s eyes are always level with walking people’s crotches. My first full day in my scooter was at Wondercon where men in spandex thought they didn’t need cups of some sort. Believe me, I wish I could have gotten up that day.
Myth #8: When you start using a wheelchair or scooter, you’ve given up. Don’t give up!
Quite the opposite, in fact. When I spent all my non-work time sitting on the couch with my leg propped up bemoaning all the things I couldn’t do, I’d given up. The first week I used my scooter and came home on a Friday not crying in pain, but crying because I could actually have a full life if I just got over my trepidations about using mobility devices, that was plowing through. There are a lot of stigmas attached to mobility devices used by anyone who isn’t paralyzed from the waist down (hence this blog post), and I had to get past them. That required a lot of not giving up.
Myth #9: Okay, fine; you need the wheelchair or scooter, but most other people who can walk and use one are faking it
Um, okay? Let’s play a game. Read this sentence:
You aren’t like those other wheelchair users who fake disabilities to get better parking and preferential treatment.
Now, replace “wheelchair users” with “African Americans” or “Latinos” or “Asians” and then replace the italicized underlined section with a negative stereotype that goes along with that ethnicity.
Kind of makes you sound like an ass, doesn’t it?
While I’m on the subject, here’s one thing people with disabilities have in common with other groups who have legal protections: disability isn’t a choice. That’s why people with disabilities have their rights legally protected along with people who have been discriminated against due to race/ethnicity, gender, and age.
Myth #10: Some people’s lifestyles do lead to their disability. They don’t deserve help/accommodations
Okay, I see you’re trying to be difficult. I don’t think I can disagree with the first one. If someone thinks extreme snowboarding is fun, and they end up with an injury that leads to a disability, then to some degree they chose to do something risky. But I disagree with the second that they don’t deserve help. We’ve all done risky things, and just because we weren’t the ones who got injured from them doesn’t make us somehow superior to those who did get injured. Also, it’s just heartless to reserve help from someone who needs it.
No, you know that’s not what I’m talking about.
Wait, what? You really want to go there?
Don’t get so sensitive. You’re thin. I’m not talking about you.
Fine. Here’s what I’ve observed. Some people that use scooters are overweight. Based on my observations (which are not scientific, but I am now hyper-aware of people in scooters the same way people start noticing a certain car once they’ve bought that model), people using scooters and wheelchairs have the same range of weight as people walking around. But let’s say I’m wrong and the median weight of people who use wheelchairs and scooters is higher than that of the average ambulatory American; here’s why this assumption that some people use scooters or wheelchairs just because they’re “fat” or “lazy” is bollocks, in two parts:
1) We can’t tell how or why a person gained weight. I mentioned above that weight gain was a complication of my own mobility issues. I’m lucky to have the energy and ability to do some pretty rigorous activities. Not everyone is. People with more systemic problems may not have the physical capability or the energy to stay active. If they found themselves unable to work due to the disability, they may not have the financial resources to access gyms and pools or get the physical therapy they need. They may have suffered depression due to the major lifestyle change that came with the disability (I know I did) and found themselves eating for comfort as they found themselves trapped in their homes. It’s entirely possible the disability came first and the weight came second.
2) Even if the weight came first, and even if the weight is a contributing factor to the lessened mobility… how does it negate the underlying disability? In order to work or be social, both of which are important to human beings, this person needs to use a device to get around. The idea that somehow overweight people deserve to be second-class citizens is one of the most offensive ideas spreading around our country to begin with. Now you want people who are frequently judged because of their size to be judged even more because they also have a disability? I just… I don’t know what to say.
Myth #11: Not very many people use wheelchairs part-time
I invite you to read these blogs: