If you don’t personally know a wheelchair user, you’ve no doubt seen us out and about, and been curious about us and our lives. This list attempts to answer some of your questions so that you don’t ask a disabled stranger, and also offers information I and other wheelchair users consider important for nondisabled people and people who don’t use a wheelchair to know. Here are Five Things Wheelchair Users Want You to Know, Part One.
Please note, trigger warnings for ableism, ableist language, inappropriate touching of disabled people, non-graphic discussion of sex, and trauma related to disability apply.
1. A large number of wheelchair users can stand or walk for short periods.
Someone who can stand or walk a little but still needs a wheelchair for certain distances and activities is called an ambulatory wheelchair user. Unfortunately, not many nondisabled people know about us. When people ask why I use a wheelchair, they are usually surprised to learn that I can walk short distances and that I’m not paralyzed (or more precisely, that I don’t have a spinal cord injury), nor do I have multiple sclerosis. In my experience, MS and spinal cord injuries (SCIs) are the conditions most nondisabled people uninformed about physical disabilities associate with wheelchair use. People often see me move my legs and express surprise that I don’t have a spinal cord injury, even though some people with SCIs have either involuntary movements due to spasms, or can control the affected limbs to a limited degree. Nondisabled people have accused me and other wheelchair users of faking a disability, or exaggerating one by using a wheelchair in some instances and standing and walking (sometimes with assistance or a mobility aid) in others. This kind of harassment from nondisabled people is horrible to experience and quite damaging emotionally. There are many conditions that necessitate ambulatory wheelchair use, whether it be only sometimes, frequently, or most of the time. I use a wheelchair because chronic pain and myalgic encephalomyelitis, aka chronic fatigue syndrome (known together as ME/CFS), makes walking difficult, painful, and exhausting. I can walk from the couch to the kitchen in my small home, but need to sit on a stool to rest, and again to cook. I can walk to my car from my front door, with a cane for balance, but need my wheelchair to traverse distances longer than that. Other reasons a person might need a wheelchair include leg amputations (or not being born with one or both legs), arthritis, cerebral palsy, lung disease, stroke, connective tissue disorders like Ehlers Danlos Syndrome, and pain disorders like Complex Regional Pain Syndrome (CRPS). Never assume someone doesn’t need their wheelchair because they can stand or walk a little. Such an assumption ignores the lived reality of ambulatory wheelchair users and contributes to the discrimination we face, even from other disabled people.
2. Don’t ask strangers in wheelchairs “what happened to you?”
This is something people do far too often and it’s incredibly rude. People do not go up to apparently nondisabled strangers and ask for personal medical information, but they will boldly ask disabled strangers to divulge details of what could be an incredibly painful or personal topic. Remember, some disabilities are caused by traumatic events. You could be asking someone to talk about a car accident, a shooting, or serious illnesses. Disability is life-changing and can have a huge effect on how we live our lives. My disability shot down my dream of getting my PhD and working in a field I loved. I lost friends and family who could not deal with or understand my disabilities (including my being an ambulatory wheelchair user), or who were just not supportive. I’m not alone in that. A stranger asking questions about a person’s disability can bring difficult memories and emotions bubbling to the surface. Imagine asking someone who was hit by a drunk driver and lost their spouse why they’re in a wheelchair. In addition, the cause of someone’s disability is, quite frankly, none of your business. Don’t go digging through disabled people’s pasts, looking for an “inspiring” story, and don’t try to push us into reliving trauma so your intrusive interest is satisfied. If a disabled person wants you to know the nature or cause of their disability, they will tell you. There’s no reason for a stranger to ask why someone uses a wheelchair. It should have no effect on your interactions with them, nor how you treat them.
3. Quit touching us and our wheelchairs, and keep your inappropriate questions to yourself.
You may have just asked yourself, “Why would someone ask a complete stranger how they ended up in a wheelchair?” It’s a good question. In my experience, people tend to treat wheelchair users like curiosities and public property. Strangers ask us deeply probing questions, touch our bodies without consent, and attempt to take control of our wheelchairs. Why? Possibly because many nondisabled people view disabled people, including those of us in wheelchairs, as helpless people lacking agency. Or, because society doesn’t teach people about disability, they are oblivious to their own ableism. Regardless of why people treat us like curiosities without agency, and helpless objects of pity, it’s a fact of life when you use a wheelchair. Once, while I was in line to get a new license plate at the DMV, a woman in line behind me loudly asked me how I used the bathroom. When I’m struggling to navigate crowded or inaccessible public spaces, people will grab my wheelchair’s handles (which are there only for emergencies) and shove me if I’m in their way or moving too slowly. A man almost dumped me out of my wheelchair at the post office by doing this. He didn’t know my front wheels were stuck on the entrance’s raised threshold, and I almost fell to the floor when my chair tipped. For wheelchair users, our chairs are like extensions of our bodies and we feel every movement, so being pushed without warning is a lot like shoving someone in the back, hard, to get them to make room. It’s not only rude, it’s dangerous. You could seriously injure the person in the wheelchair, even by just pushing them. Remember, a lot of us are in pain or have injuries. Another concern is that you could damage our wheelchairs, which can cost thousands of dollars. Please, even if someone is obviously struggling, obtain permission before touching their wheelchair.
Unfortunately, it’s not just our chairs people like to touch. Many nondisabled people also appear to love touching wheelchair-using strangers. They will ruffle our hair, pat our heads, and rub our shoulders; all without permission. Before the COVID-19 pandemic started, while I was sitting in my wheelchair at a coffee shop waiting for a friend, an elderly man standing behind me decided the best way to get my attention was to grab my ponytail and pull it. I lived 26 years of my life without a physical disability that necessitated a wheelchair, and in those 26 years I was never touched the way I am now that I’m a wheelchair user. And yes, the man then asked what was “wrong” with me. Almost every wheelchair user I speak with has stories about nondisabled folks touching them in ways that are wholly inappropriate. Rubbing our shoulders, patting our knees, or touching us in any way without permission is uncomfortable, and can be dehumanizing, as people don’t randomly pull the hair of strangers they assume to be nondisabled. Why? They respect their autonomy. Please also keep in mind that many people have experienced assaults. Disabled people are at higher risk of abuse and assault (see link below) and might be triggered by you touching them. We might also be in pain or at risk of injury. If you get the urge to pat a grown person (or child) in a wheelchair on the head, you ought to sit with that and determine why you wish to do so, then stop yourself.
Violence against adults and children with disabilities. [text] Trigger warning for abuse and sexual assault.
4. We’d like you to stop using phrases like “wheelchair-bound” or “confined to a wheelchair.”
Nondisabled people are often under the impression that wheelchairs are cumbersome, that they are confining, and that wheelchairs curtail disabled people’s freedom. Of course, many disabled people would rather be able to walk full-time than require a wheelchair. That’s understandable, and I recognize the great diversity of opinions amongst wheelchair users. However, that does not mean wheelchairs take away our freedom. Our inaccessible society does that. Wheelchairs are usually quite freeing, in the sense that they allow disabled people to do more than they could without a wheelchair. I wrote about this in a previous blog post. Without my wheelchair, I wouldn’t be able to take myself to my own doctor appointments. I wouldn’t be able to take a “walk” through the park with a friend (who might help push me if I get too tired). I wouldn’t be able to pick up a gallon of milk and my prescriptions from the pharmacy. In short, while my disability makes many things difficult or impossible, my wheelchair helps keep many things possible. Many of the things I can’t do, like enter everyone’s home in my wheelchair, attend an event in an inaccessible part of town, or enter a nightclub is due in part to institutional, systemic ableism. Things like lack of curb cuts, badly maintained cobblestone streets, or missing ramps are all examples of ableism that runs deep in cities, towns, and rural regions. That’s not my wheelchair’s fault. Please take care with the language you use when discussing wheelchair users. Unless someone in a wheelchair explicitly says they prefer the terms “confined to a wheelchair” or “wheelchair-bound,” simply use “wheelchair user,” as that’s your safest bet.
5. Yes, wheelchair users can have sex. But quit quizzing us about it.
Society tends to view all people in wheelchairs as sexless beings. We’re not. The truth is, physically disabled people who use wheelchairs are just like everyone else when it comes to sex. We can exist anywhere on the expansive sexuality spectrum (gay, straight, bisexual, pansexual, queer, etc.), and just like physically abled people, physically disabled wheelchair users exist all along the equally expansive sexual-asexual spectrum, meaning many of us experience sexual desire and many of us are interested in and enjoy sexual activities.
I’ve been on dating sites where I’d get inundated with messages from strangers asking if I could have sex, because they have no understanding of disability. The truth is, people with all kinds of physical disabilities have sex. Paraplegics, quadriplegics, folks with cerebral palsy, people who have had strokes, amputees, people with severe chronic pain, and other disabled people can generally have sex if they want. That sex may look different than how you have sex, but it’s still sex. Reminder, as stated at the beginning of this, there are many disabilities that can put someone in a wheelchair. We are not a monolith when it comes to the nature of our disabilities, nor are we a monolith when it comes to our sex lives. Wheelchairs don’t kill desire or libido. Often, adaptive technology (sex toys with special grips, wedge pillows, vibrators, etc.) can help disabled people have sex with their disabled or nondisabled partner(s). If you’re curious how disabled people can have sex, you might want to read up on it. That said, you should refrain from asking strangers if and how they have sex unless invited to do so, or if you’re actually about to have sex with them. Googling things like “sex while disabled,” “sex with a spinal cord injury,” or other disabilities plus “sex” will bear fruit. I also recommend the resource below.
Sex while disabled may occur in ways you would instantly recognize, and could also be quite different than the sex you’re used to, as disabled people must adapt to our limitations. The important takeaway here is that when it comes to wanting and having sex, wheelchair users are no different than other people.
Thank you for reading! This has been Five Things Wheelchair Users Want You to Know, Part One. Part Two will be forthcoming, because there are still a great number of things wheelchair users want you to know. If you’re a wheelchair user with a suggestion, feel free to comment below, or use the contact form to shoot me a line. Are you nondisabled, or a disabled person who doesn’t use a wheelchair, and have (respectful) questions? You may also comment below, and if relevant, I’ll try to answer your question in a future post.