You may have seen wheelchair users out and about during your daily routine. You may even have a friend or acquaintance who uses a wheelchair. But what do you really know about us? Of course, wheelchair users are just as different from each other as we are from everybody else in the world. However, there are some things unique to us that remain a big mystery to the able-bodied. To help you learn more about us, here are some things I think you really need to know about wheelchair users.
1. We travel. Some of us travel A LOT. If you follow my accessible travel blog with any regularity, then you know this already. But some people still think it’s a miracle that a wheelchair user can fly on a plane, let alone travel around the world alone. Of course, traveling with any kind of mobility device comes with its unique challenges, but we overcome them in the pursuit of amazing experiences.
2. We drive. I still find it funny when people get amazed at how my accessible SUV works. Hand controls are nothing new and I think a lot of people have at least heard of them, but transfer driver’s seats and lock-in devices for power wheelchairs in vans still seem to be some sort of novelty. Technology is our best friend, and the variety of assistive devices out there that help wheelchair users drive independently is pretty amazing. Sadly, if we want to travel alone and drive, our options are non-existent if we need to rent an accessible van, as hand controls on rental vehicles are limited to sedans and SUVs without ramps.
3. We work. I’m not sure how many people know this, but Texas Governor Greg Abbott uses a wheelchair. If that’s not a great example of a wheelchair user in a full-time job, I don’t know what is! Many of us have full use of our upper bodies, so we can work in retail, office jobs, executive positions – you name it. Wheelchair users with limited use of their hands can (and do) often work as writers or other online endeavors where they can use assistive technology to type with eye movement. Pretty cool, right? What’s not cool is the fact that it’s still legal to pay people with disabilities less than the minimum wage. More of us are striking out on our own and making names for ourselves as consultants and business owners.
4. Our chairs are extensions of our bodies. Most people see wheelchair users and their mobility devices as two separate things. The truth is, our wheelchairs are as much a part of our bodies as our arms and legs. We know every vibration and every bump, and have a very finely tuned sense of location and balance. This is why it can throw us off, and sometimes place us in danger, if you touch or move our chairs without permission. For example, would you ever grab a stranger’s hand and start pulling them along with you? Would you ever lean on someone you didn’t know for support? Then it’s probably not a great idea to start pushing someone’s chair or lean on their head rest without their permission. It’s a violation of our private space, and we’d prefer if you’d refrain from doing so.
5. Lack of physical power doesn’t mean lack of brain power. Everyone who uses a wheelchair has a different physical ailment. Some people use wheelchairs as the result of a car accident. Others were born with a condition like cerebral palsy or muscular dystrophy, or developed something later in life like multiple sclerosis (like me). Because of certain conditions, a wheelchair user’s ability to speak clearly may be affected. Some people believe this is directly related to their level of intelligence or ability to hear or understand anything, so they address the wheelchair user’s caregiver/companion like they’re not even there, or speak to them like they’re a small child. While some wheelchair users do have brain trauma, their communication limitations are usually not reflective of their capacity to think — or preference that you speak to them like you would anyone else.
6. We don’t ask for special treatment. I’m not going to lie; both at home and during my travels, there are many occasions where I get in somewhere first or get sent to the front of the line because I’m in a scooter or my power wheelchair. This isn’t because I have some sort of special VIP access or asked in a sweet voice. Usually it’s because there’s only one way to get me inside the building, and that way is usually in the back or a path that has some sort of restricted access. For example, I couldn’t have waited in the two hour-long line to get into St. Peter’s Basilica even if I wanted to because that line led to a series of stairs; they had to take me to a private access elevator just so I could get in. At theme parks, I don’t mind waiting in line like everybody else because it means I get to spend more time with my kids, but sometimes those lines just don’t have room for wheelchairs to pass. It’s definitely nice, but this isn’t because we ask for or expect special treatment from anyone. We just want to have access to and enjoy things just like everyone else.
7. We need love and physical contact. I’m not sure why, but many times people forget that we’re…people. We have the same needs for connection and touch and intimacy, just like everyone else. That doesn’t always mean sex, although many wheelchair users are perfectly capable of being intimate with someone else in that way. Human beings are wired for personal connection and love, which means that we’re no different than everyone else in that way. Chances are pretty good that were not contagious! So if we’re friends and/or you have our permission, feel free to shake our hands, give us a fist bump, give us hugs, or just make contact in some way to let us know that you care – and see us as human beings first.
8. Your curiosity is okay. Trust me, we’re used to getting stares. It doesn’t mean we like it, but I’d like to think that most of those stares come from curiosity rather than revulsion. In our society, it seems to be taboo to talk to wheelchair users about why they need one in the first place. Of course, it’s never okay to approach a wheelchair user you’ve never met before out of the blue and ask them what’s wrong, or what happened. You wouldn’t do that to a stranger who can walk, I hope! But if you have the opportunity to engage in a conversation with a wheelchair user about something else, it’s okay to express curiosity and ask them at some point if they feel comfortable talking about their situation. Just be preprepared for them to say no. However, it could be a great opportunity for you to learn something new about a medical condition, and what we’re truly capable of doing despite our physical limitations.
9. You don’t always have to say something. I’m not sure if it’s an American thing, but when we get in an awkward situation, we always feel the need to say something, usually rather cliché, to lighten up the moment. And there are definitely plenty of opportunities to get into awkward moments in conversations with wheelchair users! If they feel comfortable enough to tell you why they’re in a wheelchair, you don’t always have to say something like I’m so sorry, or but you look so healthy, or I’ll pray for you. You might have more questions, and I understand it can be tough to find the right thing to say to express kindness without sounding condescending. So if you’re not sure about the right thing to say or whether you should say anything, it’s okay sometimes to say nothing at all.
10. We’re tired of being forgotten. It’s really hard showing up to an event or place of business just to discover that the business owner or event organizer clearly didn’t think at all about wheelchair users. This isn’t necessarily an ADA issue. Many times we can get into the building, but maneuvering once inside can be very difficult. For example, I attend a lot of conferences where event planners don’t set aside seating in meeting rooms for wheelchair users, or have the catering staff place food platters at a level where wheelchair users can reach them. I’ve been to dozens of restaurants that have accessible bathrooms, but the door can’t fully open because it’s blocked by highchairs in the hallway, or the soap dispenser is placed beyond my reach at the sink. Marches and demonstrations sometimes occur along routes or in locations that are not wheelchair accessible or don’t have easy access to ADA bathrooms. These things aren’t done with malicious intent, but it’s clear to me when wheelchair users are forgotten in the planning.
The bottom line is that we want to be a part of society and visible in this world just like everyone else. Many people make several assumptions about wheelchair users that are quite wrong, but feel uncomfortable just having a conversation with us to clear up those assumptions, or to find out what it takes to include us in things. Hopefully by reading this list you’ll understand a bit more about us, and realize that we’re more like than we are different.