Before bombarding a visibly disabled person with questions, consider how your interaction looks from their perspective.
As a person with a visible disability, I get quite a few questions about this part of my life. They come from friends, teachers, classmates and even complete strangers asking about my health issues and how they affect my life. Overall, I’m pretty open to answering questions; people can’t understand what it is you and others like you go through unless you are willing to help them. However, these are all my thoughts and opinions on disability, and other people with disabilities might differ.
Here are some of the most common questions I get, and some that I wish I would (or wouldn’t) get.
What’s your disability?
Good question: I don’t know. I’ve been seeing doctors, but they don’t have a diagnosis yet. Some of my symptoms include chronic pain, passing out, extreme weakness, fatigue, memory issues and trouble walking or lifting things. I use a powered chair 95 percent of the time.
Were you in an accident or have you had it since birth?
Neither. Around four years ago, I gradually started getting sicker and sicker, until I got to the point last year where I needed a wheelchair. It’s common for people to develop health issues around college-age or later in life. People can come across a disability through many different ways aside from being in an accident or being born with it, so this isn’t always the greatest question to ask.
What counts as a disability?
It depends: there are two models of disability. The medical model depends directly on how healthy you are and the social model depends on how society limits people with health issues. Some common examples of disability are needing a wheelchair or other accessibility device, intellectual disability, mental illness, vision impairment or hard of hearing.
The real factor, though, is rather if people want to count themselves as being disabled. For example, one person with depression might not consider their own struggles as severe enough to constitute a disability, while another person with depression might consider their day-to-day life impaired enough to classify themselves as disabled.
What are some of the worst parts about being in a wheelchair?
It’s exhausting to be in a wheelchair. Many places are inaccessible, even if the law requires them to be. Even on our campus, we have entire buildings that are not accessible, such as Phillips and Harwell. People also stare at me daily, seemingly trying to find something visibly wrong with me. I don’t have the time or energy to confront each of these incidents. There are too many inaccessible things in public for me to pick a fight with every one of them.
What are some of the best parts?
My wheelchair lets me actually live my life. Without my wheelchair, I would not be able to attend my classes or go to social events. As much as this campus and this world are inaccessible, there are so many places I can get to where I can enjoy my life because of my chair. It’s one of the most valuable things I own; it grants me freedom.
Why do I see so few disabled people in public?
There are two main reasons that I see. One, it is expensive to get accessible equipment. The cheapest powered scooter or wheelchair that I could find when I was shopping was $900. Getting a car that has a lift to get a heavy wheelchair in it for you is a whole other story. Some people can’t afford this, or are too sick to have the energy to make many public outings. Even having the extra money to go out and do fun things can be a lot when someone has medical bills to account for.
The second reason is that a lot of disabilities are invisible. There are a magnitude of disabilities that you can’t see with the naked eye, including illnesses that cause extreme fatigue, visual impairment, autoimmune disorders or chronic pain, to name a few. There are people with disabilities all around you; you never know what someone is going through just by looking at them.
Is it okay to ask someone what is wrong with them?
This is a touchy subject for many people. If you are close friends with someone, it is understandable to ask them about all aspects of their life. However, if you are a random stranger that has spoken all of ten words to someone up to this point, many people do not want to be asked this. It gets tiring to defend your reason for having a visible sign of disability to strangers every time you are in public. I am a pretty open person, but even I get tired having to explain myself every time I want to make a short grocery run.
I saw you walk a few steps! That means you’re all better, right?
This question goes back to the invisible disability thing. One day, I might feel good enough to hand in a test across a room, but I might still be in a lot of pain or extremely tired. Another thing that people don’t realize is that people can have good or bad days, weeks or even months. I might be feeling good one day, but if I keep pushing myself to walk more and more I will only go back into a bad spell.
Are all wheelchair users’ legs paralyzed?
Nope! Like I said earlier, most days I can walk a short distance at a time. In fact, it’s not uncommon for people to be ambulatory wheelchair users, which is only needing a wheelchair part-time for any reason. This is not everybody, but it is good to be aware that it exists, so that if you see someone stretch their legs, you don’t think they are faking it.
Why haven’t you tried going to someone like Dr. House?
I have, actually. A few months ago, I tried to get into Mayo Clinic, which is considered one of the best hospitals in the nation. They rejected me because they have so many inquiring patients that they can’t keep up with the demand.
What are some things I can do to help?
The best thing to do is to ask! If you see someone at Walmart trying to reach something on the top shelf, or you see someone struggling to get their wheelchair into their car, feel free to ask if you can help. If they say no, accept that answer. People with disabilities are often independent people that have been living with their health issues for a substantial amount of time and know what works for them; perhaps if you helped them with that thing, it would do more harm than good. But don’t be afraid to ask!
A few things are pretty universally safe to help out with for those with disabilities. It is always helpful to hold open a door, as a lot of handicap buttons have a tendency to not work. It is kind to hold open a door for anyone, so it isn’t a stretch to hold it open for an extra few seconds for someone with a disability. Also, if you see anyone being discriminated against, whether by another person or by an inaccessible building, speak up! It can be exhausting and time consuming for a person with a disability to do it all the time. Allies can be some of the greatest catalysts for change.
What are some things that are not helpful?
Again, always ask before you try to help someone with a disability. One time, I was sitting in my wheelchair trying to put my jacket on. I was struggling to find the hole to put my arm through, but it is a task that theoretically I should have no problem doing as I have done it many times before.
However, a woman thought I needed help so she came up behind me and started shoving my arm into the hole. I had never met this woman before and it hurt to try to push my arm a way it doesn’t go. I also felt shock, like I didn’t have any bodily autonomy because of this random stranger. If she had asked, I would have easily been able to turn her down and she would have gone on her way. Most people don’t like to be touched without their permission.
There are also stories about people trying to push powered wheelchairs or scooters without someone’s permission. This often isn’t necessary, and can actually ruin some chairs as they are only supposed to be pushed when they are in the “off” or “manual” position. Of course these people have good intentions, but the best way to help someone is to ask!
What are some questions not to ask?
What’s your sex life like? Would you ask this to someone who wasn’t disabled?
Are you sure it’s not cancer or ALS? People usually don’t appreciate you implying that they might be dying.
Is it contagious? That’s not how this works.
Have you tried drinking water? Sleeping?? Eating food??? I hadn’t thought of that, thanks.
You don’t look disabled. You’re too young, pretty, etc. That’s not a question. People with disabilities can appear like a wide range of things and are from different backgrounds.
Want to try this new supplement I’m selling through my pyramid scheme I got roped into and now I can’t get out of? I’m good, thanks.
