I got my first “powerchair” (motorized wheelchair) in 2014, seven years after I became wheelchair-bound, and it was nothing short of ecstasy. For the seven years prior, I had grown accustomed to being restricted to a wheelchair; I wasn’t happy about it, but I made the best of it. I lived on my own in a house in Palm Springs (with three dogs – Mandy, Wil, and Dennis) and had two private caregivers. If I wanted to go somewhere, the caregivers would drive me (in a Ford Escape I bought for just that reason – this avoided liability issues with the caregiver’s auto insurance and having to pay them “miles” compensation); once there, I relied on them to push me in my wheelchair to get where I was going.
Now if we want to be completely accurate, I do not use a wheelchair, I use what is called a transport chair, the main difference being that a wheelchair, with which most of you will be familiar, has two large rear wheels with a railing attached to their circumference which the chair user grabs and rolls in order to propel themselves, whereas a transport chair has four regular-sized wheels and requires a third party to propel it using handles on the back of the seat. Unfortunately, I cannot use a wheelchair as my left hand and arm don’t “work;” if I were to grab the wheel rails with my hands and attempt to propel myself, we would only see action on the right side, which would cause the wheelchair to go around in circles because the left wheel would remain stationary. Not useful!
Bottom line, I was “dependent.” If I wanted to go over there, someone had to push me. It wasn’t until I got my first powerchair, operated with a joystick in my right hand, that I realized the effect this was having on me. The depressive effect. For me, the powerchair was my first taste of living independently, insofar as I am able given my disability.
Everything about our lives as we grow up centers on gaining “independence.” We want to break free of the confines of family, not rejecting it but setting our own course. We each want to be the author of our lives, and nobody gets to make edits. If I want to go to the coffee shop down the street for one of their ginormus cinnamon rolls this morning, I don’t want to have to enlist help doing so.
But reconciling yourself with disability means accepting that sometimes you need help. Like just last Thursday. I have some ability to “walk” (it’s more like shuffle) short distances using a walker; it’s how I get around inside my apartment. Returning from a trip to the commode, I took a turn too sharply, lost my balance, and fell over. All residents here at Stonewall Gardens have an emergency call button on their person for just such an occasion; I wear mine on a lanyard around my neck, others prefer the wrist model which looks like a watch.
So all I had to do was press my button, and within minutes four staff members showed up, and three of them lifted me up off the floor and into a chair and assessed whether I was injured and needed medical attention. I was fine.
But lying there on the floor waiting for them to arrive was a reminder, as if I needed one, that I am not independent. Something as mundane and commonplace as going to the toilet turned into an “event,” one that ultimately I was not in control of. To put it another way, had our staff not responded, I’d still be on the floor! That is hard to accept for someone like me who prides himself on doing for myself.
Getting my first powerchair felt like shackles had been unlocked and I was free! Being able to go where I want, when I want, without needing to rely on someone else to push me – even if it was just to the other side of the room – was liberating. That first day I zoomed up and down the hallways of the assisted living facility where I was living at the time with all the excitement of a kid trying out a new toy; I even “explored” other parts of the building I’d never seen before, though I’d been living there for over a year and a half!
There is a fine line between independence and foolhardy stubbornness. I try to do as much as I can on my own and for myself; I need to, because every disabled person needs to develop his or her own philosophy of disability – one is not provided to you – and mine centers on the concept of agency. I am the agent living my life, making my decisions, taking my actions. But concomitant with that is knowing, understanding, and respecting one’s limits.
I’m not talking about grand things here, but simple, almost trivial ones. When I fell last Thursday, I felt no shame in calling for help and receiving it. But later that same day, while seated in my recliner I dropped my water bottle on the floor and it rolled just out of reach. I could see it with my own eyes; it was maybe three feet from where I was seated. Surely, this is not cause for an emergency button press! So, I reached out for it, bending forward and extending my right arm to where I could just touch it with the tips of my fingers. This, of course, had the effect of causing it to roll just a little further away, and as I strained forward to stop it doing so I felt myself falling forward. So I stopped. I threw all my weight behind me to pull me back into the chair and avoided ending up on the ground again. I want the agency of being able to do for myself, but I know and respect my limitations.
I pressed my call button, a staff member came and picked the water bottle up for me, offered to refill it with ice water (I live in the desert, you have to stay hydrated!), and I got on with my afternoon. For a brief moment I felt shame: how pathetic, you can’t even pick up a water bottle laying on the floor in front of you! But because my philosophy of disability defines ‘agency’ as doing what you can for yourself and asking for help to do the things you can’t, I quickly quieted that shaming voice in my head by telling it:
You don’t lack agency when you ask for help to do something you can’t, you are actually exercising agency – the agency of ASKING for help.