Ten Things I Wish You Knew (from an Ambulatory Wheelchair User)

A small guide on things to consider before you interact with wheelchair users, and other disabled people, based on my experience as an ambulatory wheelchair user.

When most people think of a wheelchair user, they automatically think of someone with a spinal cord injury, resulting in some form of paralysis (paraplegia, quadriplegia, hemiplegia, etc). While it may come as a surprise to many, an astounding amount of people who use wheelchairs are ambulatory (are capable of walking, at least to some extent). A large majority of wheelchair users are considered ambulatory (meaning they may not be able to walk or stand for extended amounts of time). As someone who is ambulatory, here are ten things I wish you knew:

Not all of us are paralysed

If you see a wheelchair user stand up, move their leg(s), or even walk, that does not mean that they are faking. Just to reiterate, not all wheelchair users are paralysed/experience paralysis. Also, some people with paralysis/spinal cord injuries may have some functioning below their injury sites, allowing them to walk (assisted) for very short amounts of time. I suffer from periodic paralysis due to a neurological condition (that my doctors believe may be Functional Neurological Disorder/FND) and rely on a wheelchair during those times when I leave the house (due to excruciating pain, dislocations, muscle weakness, tremors, and a myriad of other symptoms caused by my two rare, genetic tissue disorders).

Different Aids for different days

Since a lot of wheelchair users can walk, they may choose to use different (mobility) aids for different days. Using crutches, a cane, or even walking unassisted one day does not negate the need for a wheelchair the next. Symptoms can fluctuate, and just like non-disabled people, we have good and bad days.

Treat my aids with respect

My mobility aids are an extension of me, so please treat them as such. You wouldn’t touch a non-disabled person or move them without their permission, so don’t do the same to disabled people and our mobility aids. I know it can seem tempting to play with someone’s wheelchair or crutches, but if you were to damage them, the effects on the disabled person are irreparable. Wheelchairs are expensive. The negligent behaviors of individuals and companies (such as airlines) directly impact our ability to access space, but also our finances. Being disabled is expensive enough as is (especially if you live in countries that are without a public healthcare system), and the cost of mobility aids is egregiously high. We cannot afford new ones, so treat them with the utmost respect.

The freedom of rolling along

My wheelchair is my freedom. Prior to using a wheelchair (after my disabilities progressed), I had lost almost all of my independence. I couldn’t dream of being able to go anywhere, besides to doctors’ appointments and home, maybe school on a good day (not that there were many). My wheelchair enabled me to go on trips to amusement parks with my friends, which I thought I would never be able to do again. On a more regular basis, I was able to maintain a semi-consistent social schedule that benefits not only my physical health but my mental health as well.

Our experiences are different, and that’s okay

Your experience of using a wheelchair for a few weeks for an injury is not the same as my permanent disability. People are more likely to accommodate/help you, and it’s easier for you to distance yourself from any ableism that you may have encountered during that time because it was only temporary. For any disabled person, and in this case, wheelchair/mobility aid users, we can’t. Injuries are hard, and it can be difficult as well, but it’s important to recognize the unique struggles that differ between a temporary disability, illness, or injury, and permanent ones. Instead, it may be more helpful to offer support in other ways and focus on how they may be feeling about using a mobility aid (especially if they’re new to it).

Be mindful when asking for information

Some thoughts are meant to remain inside thoughts. Please stop asking us intrusive questions and bombarding us. You’re not entitled to my medical information just because some aspects of our disability(s) are visible (this includes offering unsolicited medical advice or ‘cures’ that worked for your brother's girlfriend's sister’s dog.) In the same vein, please stop trying to proselytise disabled people, using the premise that we are only disabled because of our sins or would be healed if we believed in XYZ. Some disabled people may appreciate the comfort that religion brings, but not all of us want it forced onto us, or want to feel that we’re not doing enough in our chosen faith to deserve to be healthy. Think before you speak!

Everyone deserves equal access

Access is a human right, and beyond that, accessibility goes beyond ramp access. The entirety of a venue has to be considered (are there flashing/strobing lights, is there readily available seating, are elevators on sight if there are numerous floors, etc.) Everyone deserves equal access, and it’s difficult to consider a country or nation equitable if a quarter of the population can’t even access necessities.

I’m not taking the easy way out

I am not ‘giving up’ by choosing to use a wheelchair. This was a hard decision to make, and one that took a very long time to consider. But at the end of the day, this is what my healthcare providers (yes, numerous) and I have decided is best for me. Since becoming a wheelchair user, I have been more productive because my body is not working as hard to try to support my weight and get to other places, and I’m having significantly fewer medical episodes.

Universal design is for everyone

Accessibility benefits everyone, not just disabled people or wheelchair users. While we are predominantly the catalyst of change behind universal design for products or places, these changes benefit a plethora of people. Ramp access, elevators, and other accessibility often thought of for disabled people also benefit parents with strollers/prams or small children who may not be able to climb lots of steps yet. Abundant and available seating which may help disabled people who cannot stand or for extended amounts of time is also beneficial to those who may have been traveling for longer periods of time, those who are facing homelessness/housing insecurity, or even those who are simply tired. The superfluity of different accessibility features that we may not consciously think of can have an astronomical impact on those who need them. And one day, you may find that you need it too, so it’s important to protect and advocate for them as best we can.

If there is one thing that I hope you can take away from this, it’s that I do not want your pity. I understand that my situation is unusual (especially being a medically complex rare disease patient), but that does not make my life any less worth living. I’m happy to be where I am now. I still struggle with daily debilitating symptoms, but I have learned to live with my broken body. If we all worked towards disability acceptance and practiced empathy for each other, it would make the world so much more accessible and enjoyable for everyone.

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