Now you see it, now you don’t. So, if I run into you at the market and I’m not using my scooter what does that mean? If I’m in a small store with ample parking and I bop in and out, without any support; what’s that about?
I’m sure it’s confusing to some people, and allows other the fodder to spread rumors that I’m not really disabled; it’s amazing how many people practice medicine without a license. But I need different tools for different tasks. I’m not paralyzed, though the use of my legs (and my arms at times) is limited, and as I’ve stated in this blog many times, that limitation varies. There are days when I cannot get out of bed, and there are (few) days when I can go for a long walk. –The longest walk since my illness onset, was a six mile hike about 5 years ago on a favorite trail. I did the hike, with a friend, a cane and a week to recuperate, but I did it and it made me happy. Before disability, I used to do that hike, alone, every weekend and in half the time.
Every device has its limits. A walker and a scooter not only prevent me from ascending stairs or even curbs, but also many thresholds, some doorways and any narrow passageway (such as store aisles.) A cane allows me to climb stairs (to the extent that I am able, and certainly a few steps isn’t problematic much of the time) but reduces the use of my arms by one, so that it is hard to shoot a picture, walk the dog, carry things. The walker does reduce my arms by two, but a walker with a seat, doubles as a cart and allows me to walk without the burden of carrying heavy items. A shopping cart serves as a walker, providing much of the same support, though it doesn’t have a seat in it to allow me to sit, should I need to.
For longer distances: demonstrations, shopping malls, festivals and college campuses, the scooter is a necessity, especially if I am carrying heavy bundles such as cameras, computers, books etc. But once at my destination, it’s a bit of a liability, as it is large and clunky and makes getting in and out of even accessible bathrooms awkward and difficult. For social events, where people mingle, the seated walker is essential. It allows me to move around the room (to the extent that the chairs and tables have accessible spaces between them) and participate in conversations, moving in and out of the crowd with social agility. (And at the buffet, I have a place to rest my plate.) Without the walker I’m stuck in a seat, or forced to stand when talking to people, which is harder for me than walking. I don’t know why, but standing seems to bring on more stress and pain than any other activity.
I often bring the cane with me when using the scooter or the walker, to allow me options that physical obstacles prevent me from utilizing. It allows me to walk unimpeded for short distances or to leave my larger devices behind when social design would either prevent or hinder my full participation. (Such as a banquet seating arrangement where I’ve been placed far from where my scooter or walker could access — at the annual NEA Human Rights Awards Dinner, people with wheelchairs are often seated first, but once everyone else is seated, can’t get out, so using the restroom is very problematic. Other events segregate us to the area around the edges of the event so that we don’t have full social participation. (The real solution is to rent larger halls and space the tables so that pwd can move safely and freely around the hall.)
On a wild occasion, or in the event of my ever present forgetfulness, I may forgo all devices and just walk around like a normie. I risk falling or losing my balance in the short run. In the long run, I risk increasing my fatigue. Again I have good days and bad days, so the risk varies.
I’ve taken to walking the dog in the park and bringing my camera; (or scooting, depending on how I’m feeling that day.) Walking is good for me, in moderation, and surprisinglly, I’ve noticed, since getting the scooter, and using it when I have longer distances to cover that I am stronger for shorter walks. With dog and camera, the only useful device is the scooter, so I don’t get the benefit of the exercise (though the dog does feel better!) The walker would also be cumbersome, especially where holding the leash is concerned, and the cane doesn’t allow me the use of both of my hands, so often, I opt not to use either.
Since getting the scooter lift, which makes moving the scooter from one location to the next effective, getting the walker in and out of the car has proven more difficult. The scooter lift, which is affixed to a hitch on the back of my Toyota, makes the trunk absolutely useless for an item the shape and size of the walker, at least for me. Someone stronger might be able to reach around the lift to get the walker out, but I can’t. So the walker needs to be in the back seat (limiting the number of passengers.) So if I’m going into a small store, or I’m feeling a bit stronger one day than another, I might just go in without the help of scooter, walker or cane.
Finally, each tool comes with its own image and stigma. I chose a scooter over a power chair because of the expectation that people in wheelchairs can’t walk at all, but that people in scooters can walk small distances. The resentment I have experienced when I’ve used wheelchairs and I’ve stood up has been overwhelming. I wonder why it bothers a total stranger, who is just passing by, what I can and cannot do. I’ve taken nothing from them, except perhaps their pity. On the other hand, the cane carries with it dignity. I’m not sure why, but it does. It also is a powerful deterrent against attack as it is essentially a stick. The walker seems to be the most shameful of devices, recipient of the most jokes and is the least fashionable. Even more than a wheelchair, (which perhaps evokes pity or invisibility) it seems to evoke more derision and ridicule. I feel the most vulnerable and open to attack when using the walker. It was the hardest of the devices for me to accept the use of.
So, as with all solutions, each presents its own set of problems. Even in a fully accessible world each device has its own benefits and liabilities. Each is a tool to assist me in greater access, artistic expression and social opportunity. That choice for pwds provokes such resentment and distrust has less to do with disability and more to do, in my opinion with ableists bigotry and the narrow expectations and place ableism allows for pwds. Use of device, as with treatment, housing, workplace access and education are all aspects of the coveted value: self-determination, no less important for pwds, than for any other marginalized population. It took me years to accumulate the funds or get prescriptions for these devices (scooter, walker, lift.) Canes are pretty inexpensive. Financial constraint should never, in a just society, be an impediment to access or health care, but that’s a chief reality in the U.S. where health care and human needs are so abysmally secondary to the military and the prison industrial complex. I went years unable to access museums, college campuses and shopping malls. It is a great relief now to finally have the equipment I need to get around, but this is not the case for everyone and in achieving social justice, needs to be addressed. In relation to gender and race, we talk about breaking down barriers and opening doors, metaphorically. The metaphor refers to economic and social barriers, which we too contend with but for pwds these barriers are economically, socially and physically imposed and must be removed, both in how we as a society people space and in how individual pwds can and choose to interact within the obstructions already imposed.