It’s happened again. I lost count of how many times that brings me to for 2017 alone. Someone has referred to me as “wheelchair bound” when I introduced myself (the conversation was via email) as a wheelchair USER.
This is an annoyingly frequent occurrance.
Seriously, people. Unless you’re sure the wheelchair user is into BDSM as a sub, please don’t use the phrase “wheelchair bound,” and don’t do a Google Images search for that term in spaces where NSFW images are a problem. Some wheelchair users are quite snarky about it, and image search WILL pull up fetishists.
Generally, “wheelchair bound” is preferred by those in positions of power/authority over those so labeled (i.e. medical practitioners and caregivers/family members who often have some shame attached to the wheelchair use), not so often by those who are actually the bearers of the label (particularly those who do not feel shame about the use of the wheelchair). I think the only examples of hearing that term come out of the mouth of someone seated in a wheelchair were from older para- or quadriplegics, who often are actually literally bound (via seatbelt) to their wheelchairs to reduce the risk of their falling out from lack of core muscle strength to keep themselves upright & in the chair in slope/sudden stop conditions. People with that significant of paralysis make up a tiny fraction of wheelchair users.
So, it’s inaccurate. I, like most wheelchair users, am never “bound” to my wheelchair. In fact, like the majority of wheelchair users, I am capable of walking for short distances and even (very slowly and carefully, with someone ready to catch me if I start to fall) climbing a flight of stairs. My neighbor who is a below-the-knee amputee uses a wheelchair out of the house but lives on the 2nd floor of a building with no lift (the amputation is fairly recent, a move may be in the plans) crawls up the stairs & uses other equipment to get around inside the apartment. The percentage of wheelchair users who are in the chair even the majority of their waking hours is actually very small. The vast majority of wheelchair users only use their chairs part of the time and can stand or walk for some distance, even if they’ve had lower limb amputation (using a prosthetic to get around can be exhausting and cause sores, so they will frequently switch between using the prosthetic and using a wheelchair).
Defaulting to “wheelchair bound” perpetuates the misconception that anyone who is capable of standing or walking for any distance “doesn’t need the wheelchair” and is a fraudulent user of the chair potentially engaged in some kind of scam. This is an issue that legitimate wheelchair users encounter very frequently, and is an issue that keeps a lot of people with mild to moderate level of need of a wheelchair from using them when the use would significantly improve their life function & ability to contribute to society. It also perpetuates the perception of wheelchair users as invalids (and the whole mess of etymological ick of THAT term) dependant on others (sometimes in ways that the body language/tone of voice implies are downright parasitic) for even the most basic life tasks. Some are incapable of personal care tasks and rely on care assistance from other people, but even that does not invalidate their human dignity or decrease the power of other strengths that the individual possesses.
TL:DR – be happy you’re getting this from me instead of one of the ADAPT protestors rolling around DC right now.
For the curious and not already in-the-know, my personal wheelchair use is because I have hypermobility syndrome and my major joints are prone to slipping out of place, so I’m a constant fall risk and standing/walking/stairs increase my pain level in ways that dramatically reduce my stamina. Using the wheelchair, I get about as much usable waking hours as an able-bodied person. Without the chair, I need about 15 hours of sleep for the same amount of productivity over the course of 24 hours, with not all those other conscious hours usable due to reduced ability to focus from the pain level. I am comfortable & confident enough to share my perspective and make the choice to do so when it feels appropriate. Not all wheelchair users are, particularly with strangers, and the issues can also vary considerably for manual vs. electric wheelchair use (I have both a manual wheelchair and a mobility scooter, not sure yet which one I’ll use for the event itself, probably the scooter, but I use the manual chair for access checks since it is the more likely tool to be used by someone with a temporary or new disability who may not know how to work around barriers they encounter or have the confidence/comfort to ask for assistance).
Are you planning an event somewhere in the Great Lakes region that you’d like to have me test out ahead of time for accessibility issues? Feel free to contact me. If the event/venue is somewhere I plan to be anyway, it’ll be on my priority to-do list. I’m also potentially hirable to consult on such matters for events/venues that I do not otherwise plan to attend, with fees pre-negotiated and any travel-related expenses pre-paid, if my other projects aren’t keeping me too busy. I avoid flying out of fear of losing a component of my custom-made wheelchair and all the other logistical headaches of air travel with physical disabilities, so unless I’m already going to be in the area for other reasons or can work it into a long driving trip with other things, I will not accept regardless of how generously you might want to pay me.