Design Empathy: My Time in a Wheelchair
Since Wednesday, I have had a loaner wheelchair from SVA in my possession. The chair was obtained through the school's film department, where they have a surplus of wheelchairs. Allan, our department chair, had originally put me in touch with the film department in the hopes of securing for me a wheelchair that I could modify - weld to, tear up, tear down, etc. This, of course, was way back in first semester, when we both thought that a wheelchair product would end up being part of my final portfolio of thesis designs in May. Now that my gears have shifted somewhat, I have no real need for a wheelchair for prototyping purposes, but I found myself arranging to borrow one of the film department's wheelchairs for a little over a week a little over a week ago. I think that part of me knew all along that my thesis wouldn't be complete without this exercise in empathy, especially because, back when my thesis was still in the research phase, I was told by at least one person that I interviewed that I should find a way to rent a wheelchair and go around New York City in it.
I will say with a hint of shame that I didn't expect this week to go by that much difficulty. I knew it would be hard - that goes without saying - but in the sense that biking 50 miles is hard. Biking that distance isn't a walk in the park by any means, but with enough determination, anyone could do it, even with relatively little training. That is not the case for using a wheelchair in New York City, and my presumption that it would be a relatively bearable affair reveals my implicit and possibly ableist bias.. There have only been one or two occasions that I've felt as physically drained as I have after coming home from school in a wheelchair, and the occasions that spring to mind and are in contention include summiting Mt. Judah off-trail in snowshoes and running my first half marathon while a little sleep-deprived. It is no joke, so much so that in writing this, I have no idea where to start describing what it's actually like to wheel around.
The night that I got the wheelchair, it was raining quite heavily in New York. The streets were slick, and most curb cuts were at least partially submerged in murky, disgusting water. Those puddles, easily avoided when I walked around regularly, became the bane of my existence. Not only did they make the hand rims of my newly acquired chair absolutely disgusting [my hands were covered in filth by the end of my trip], I found that their prolonged and repeated presence over time had actually begun to erode the base of many curb cuts. What was left of the once smooth curb cuts was enough to force me to rely on the help of three strangers to get me over the curb cut, and to almost throw me out of my chair twice on the 4 avenue route home. In the rain, the visibility was poor, so I suppose that it should come as no surprise that I was also almost run over a the crosswalk by Gramercy Park by an inattentive driver. Fortunately, he realized his mistake in time and stopped before hitting me.
Since that first night, I have gotten more adept at getting around. I can successfully pop my front casters up and over insufficient curb cuts, rendering much more of the city accessible. It hasn't rained since that night, meaning that my hands are spared an unpleasant and unsavory wetness - though I have taken to wearing gloves almost all the time when I need to get from point A to point B in the chair. It is just a magnet for hair and dirt - I suspect the handrails are the culprit. I've been surprised by the kindness of others - there have been multiple occasions where complete strangers have gone out of their way to help me - whether it was to push/lift/pull me up the steps leading out of my inaccessible apartment, or to help unclip me from the bus when it's my stop.
Speaking of the bus, I've ridden the bus more times in the past week than I have in the past 4 years of living in New York City. The bus is really the only way for me to get to school from my apartment. The subway station at 59th St - Columbus Circle is accessible, but the closest accessible stations to school are 34th St Penn Station and 14 St, meaning that I would have to wheel at least 7 streets before getting to school - and that's after wheeling 1 street and 2 avenues to get to the subway station in the first place. Since I get dead-tired after maybe 4 streets, this isn't really an option for me. Taking the bus means that I only need to wheel maybe 3.5 avenues, which is certainly quicker than the alternative.
Boarding buses hasn't been too bad; the new MTA buses [I say new without knowing exactly how new they are] are kneeling buses, so when I am waiting at the bus stop, the drivers know to stop in front of me, kneel the bus and let the ramp out to the street. The ascent onto the bus can be a little dicey - I find that I lose momentum halfway up, and have to grab the support rails on the bus. Then, once I'm onboard, I have to somehow turn around in an extremely narrow space [how narrow? I've had to ask passengers to move so that I could turn my chair around] so that it can be strapped into the handicap seating area. I'm extremely self conscious of this whole process, just because I know that I'm the reason that a routine bus stop has become a chore for the bus driver, and a delay for the fellow passengers. I also have only had to pay my fare once in the past week, out of 7 or 8 trips taken so far. The downside to the bus, of course, is the longer travel time. A commute that used to take me a mere 20 minutes door to door now takes me at least an hour during normal commuting times.
What I haven't gotten used to, however, is the tilt of New York City sidewalks. Almost imperceptible to the able bodied traveller walking down 5th Avenue, the streetward tilt of every New York City block becomes an urgent and pressing matter once you're traveling via wheelchair. Not only does a wheelchair user have to avoid trash, pet excrement, and bumps and cracks every step of the way, they also must pump significantly harder with one arm in order to avoid spilling out into the street, or into a tree planter [as I did today], or into a pile of trash, or into passersby, or into... This means that you're also traveling half as fast as you can normally, because you can and must only use one arm to wheel so as to counteract gravity. Muscles fatigue faster and stay tired longer. And this is coming from someone who considered himself in decent shape before attempting this, given his propensity for indoor bouldering. It sounds like it's not that bad, but this fact, and the sheer unevenness of the sidewalks, creating mini hills out of concrete where they have no business to be, make traveling even a block astoundingly tiring, one that results in an almost constant stream of expletives running from my mouth. It makes something like carrying a cup of coffee a treacherous task.
Speaking of coffee, I went today to grab a cup of coffee from the shop across the street from school - which requires that disabled people call a number if they want to be let into the store, though today's weather permitted that the door be left open all day, making my unassisted entrance possible. A trip that normally takes me 5 minutes took me 10, despite two generous strangers helping me up and over a curb that I unsuccessfully tried to wheelie over. After I got my coffee, I had to gently travel halfway down the block to the nearest driveway and cross the street before coming back the way I came to enter my school building.
It's this kind of experience - a mundane everyday task becoming a huge hassle - that really gets me down about my week [! imagine two weeks, or a month, or a year, or... a life] in a wheelchair. I've begun to sort of plan my days ahead of time in the attempt to minimize trips out of the department, to minimize blocks wheeled by myself. Sometimes I just don't want to go anywhere, knowing how newly difficult it is for me to get around. I find myself trying to gauge how far each push of the wheels takes me, and it's always surprising to me how slow I feel. I find myself asking my friends if they're slowing down because they're walking beside me.
What makes it worse is that people will either be, as my department chair was, unappreciative of just how hard wheeling around as a mode of transportation is - he, upon hearing that I'm only spending a week in the chair responded with an empathic "that's it??" - or overly sympathetic. A few classmates have expressed their pity for me as they follow me wheeling around the studio with their eyes. As much as I appreciate having people help me, and as restorative as that is of my faith in humanity, it still peeves me to ask for help - and I usually don't unless people offer first. I've noticed that when people look at me on the street, they tend to look at my chair and avoid eye contact, as if I'm nothing more to them than a wheelchair - though I wonder if this is just me feeling vulnerable and sensitive and projecting my expectations onto reality.
Being in the wheelchair is also oddly painful. I try to lift myself out of my seat every once in a while, but I still get weird sensations - a stabbing pain through my chest from time to time, random pains in my abdomen, the feeling of a pulled groin - most of which I feel safe attributing to being confined to a seat all day. I've also sustained two blisters on my right hand through gloves because of how I grip the wheelchair wheels, and how hard I need to put to get over mini-hills or other obstacles. The whiny quality of this post is not lost upon me, and I can't help but think that while I can't wait to get out of the chair on Thursday, the users that my thesis aims to help are precisely those people who can't get out of the chair. Perhaps some of my woes would be alleviated by using an actual fitted wheelchair, but I think that the bulk of the obstacles would remain.
It's also astounding that wheelchair travel is so bad for me when I'm not really using a wheelchair in the bathroom [often I find myself standing to urinate, for the dual purpose of not having to lay down a nest of toilet paper around the toilet seat every time I need to urinate, but also to stretch my legs a little throughout the day] and when I'm at home in my apartment [using a wheelchair would render most parts of the apartment inaccessible - including the kitchen and the bathroom. I'm letting myself off easy, yet I'm still struggling immensely with this aspect of the project. As far as takeaways go, and transitions into actual designed objects, I think I will have to wait until the experience is over in order to gather some objective distance from my experience in a wheelchair, in order to effectively design for it. But then again, maybe that's something that I'm telling myself because I honestly don't have the energy for problem solving at the moment since all of it is used up getting from point A to point B.
