I was going to put off this post for about a week, because my school’s orientation is tomorrow and I wanted to get a baking project in before then. But instead, I am spending my night writing about adaptive sports gone wrong.
After two delightful sled hockey outings, I thought I’d try another sport out. I have a friend who loves rock climbing, and a friend who uses a wheelchair who recommended adaptive rock climbing, so I figured two endorsements were plenty enough for me.
I took a bus to Porter Square and waited for a second bus to take me to a stop that was pretty close to the Somerville branch of Brooklyn Boulders. I checked my phone for the Sunday bus schedule, and found to my dismay that I had missed the bus by ten minutes, and another would not arrive for forty minutes (fifty minutes between buses? Seriously, Cambridge?). I called my friend, who I was meeting at Boulders, and asked her if she had any thoughts on the hilliness between where I was and Boulders. Soon after, I started to wheel myself the 0.8 of a mile (according to Google) to Boulders.
After I arrived, I rented climbing shoes, a harness, and a chalk bag (chalk is used for grip reasons, like how gymnasts use it before getting on the uneven bars/high bar). I wheeled out to this very large space with high walls.
One of the climbing instructors, Susan, came over and showed me how to put on the harness, which required some awkward hopping up and down on my part (which, to be fair, are the same hopping motions I use when pulling my pants up, although I usually don’t pull them up in a room full of people).
Susan showed me how to tie a rope so that I could start climbing. I put my hands on the plastic rocks (or maybe they’re made of a different material, but I couldn’t tell) and couldn’t get very far off the ground. Once I lifted up from my chair, both of my legs started to spasm and pull me down to the ground. So that was helpful.
We changed walls to find something simpler. Susan was cheerful and helpful throughout the session, although she mentioned to me later that she usually works with (presumably able-bodied) children. She also mentioned that there were other members of an adaptive climbing group who mostly relied on upper body strength (yeah, I couldn’t even do a pull-up in high school, so that seems like an unfair expectation), or who had their own implements to make rock climbing more doable. Judging from how she described one such individual, it sounded as though he invented his climb-assist device. Do I have to invent something?
I’m not entirely sure what was supposed to happen at adaptive rock climbing. I thought adaptive sports meant that a sport was adapted to become playable for someone with a disability, and it could be further adapted depending on the ability level of a particular individual. In sled hockey, the blades under the sled could be widened or made more narrow depending on a person’s skill level, or the back of the sled could be made higher if someone had issues with core stability.
Susan mentioned that there was another harness that might work better for me, but she wasn’t sure how to set it up. I understood and don’t hold it against her at all, but when I registered for the event three weeks ago, I wrote, “I am technically a quadriplegic, but I have strong arms and a strong core. My left hand has a normal grip, but my right hand has a bit of atrophy (which is why I describe myself as technically a quadriplegic, because I otherwise seem paraplegic).”
I guess it isn’t clear from my self-description that I’d need a different harness from the one given to able-bodied individuals, but I’m surprised that there wasn’t that spare harness on hand, and that no one had been trained to use it even though I gave three weeks notice that I was coming. Perhaps my expectations were too high.
I have to add, because there is no ignoring this, that one of the adaptive climbing instructors (whose name I did not get, and who, thankfully, was not the person I was primarily working with) managed to make me feel terrible about myself.
Me: “Yeah, it’s hard, my legs spasm and then they make it difficult to go any higher.”
Instructor: “Can you control them?”
Me: “No, they have a mind of their own.”
Instructor: “If you could try to control them, you could get them to help you.”
Me: “I can’t control them.”
Instructor: “If you try –,”
Me: “That’s not how they –”
Instructor: “But wouldn’t it be great if you –,”
Me: “They really don’t work that way.”
Instructor: “It’d be so much easier.”
Me: “Yes, it would.”
Lots of things would be easier if I could use my legs to help me. But that’s not my reality right now. And that’s why I’m looking at adaptive sports in the first place.
She then said something that implied that if I kept rock climbing, maybe I’d be able to control the spasms to help me someday. I am fully aware of Activity-Based therapies and their benefits (because I’ve been doing them for years), but I do not think that was what she was alluding to. I also don’t think a weekly rock climbing clinic would bypass current scientific developments and magically heal my nerves, nor that this particular instructor was an expert on neuroscience.
The way she spoke so simplistically about my impairment, and the way she made it sound like the way to improve my rock climbing was to get my legs to work (oh gee, I hadn’t thought about that before), first, made me feel like she shouldn’t be an adaptive climbing instructor (seriously, do they get any sensitivity training?); second, made me think that adaptive rock climbing is only for a particular type of disabled individual; and third, made me feel like my physical improvements over the past year meant nothing in the grand scheme of things (which is nonsense, of course, because I’m proud as hell of what I’ve accomplished lately).
There are only so many times I can tell someone that my legs don’t work the way I want them to before my voice starts to break and I have to keep my tone as level as possible before the waterworks start. I wanted to tell her about how I tried, for years, to control my leg spasms, and how my efforts were ineffective. I wanted to tell her about how it’s hard for me to know where my legs are in relation to the rest of my body when I’m in an unfamiliar setting (i.e. a rock wall). I wanted to tell her that I was rejected from a research study years ago that focused on neuro-recovery (it’s literally called the Neuro-Recovery Network) because my legs didn’t show “active movement,” and that the experience has become a sore spot for me. I wanted to tell her that the point of adaptive sports is to find an activity that has been modified for someone like me in mind, and not for someone like me with leg function. Why advertise yourself as a place that does adaptive sports for anyone with a disability, but not mention that you’re looking for a particular sort of ability level?
The worst part was that this particular instructor didn’t seem to think that she had said anything offensive. Has she said things like this to other people with disabilities? To be honest, I had not heard anything that poorly-thought-out since high school, where a student said I was “lucky” to be injured because that meant I could use the school’s elevator (a luxury, I suppose, in a school with ten floors, although anyone who complains about ten flights of stairs probably needs a good workout anyway), and several others said I was fortunate to have such a great college essay topic ahead of me (indeed, many thought that my disability was the reason I got into Harvard, but that’s a post for another day). I can understand a teenager saying something without thinking of any greater consequence, but someone who is supposed to be an adaptive instructor should know better.
Brooklyn Boulders, when you say adaptive, but only want a certain type of disabled participant, you should say so on your website. It’s easy: “Come join us, but only if you have active leg movement and/or an upper body strong enough to pull up your whole body.” There. Look how you’ve saved both of us some hassle.
I left and took a bus to Porter Square, where I got Berryline, which is a place with frozen yogurt and homemade mochi. It treats all forms of stress and sadness.
When I told Susan about my blog at the beginning of the session, she told me to let her know once I’ve written about Boulders. I would feel bad showing her this after my failure of a session, and about her colleague being completely thoughtless, particularly because Susan was so lovely to work with. But this is my personal blog, and this was how I experienced that day. I can’t apologize for having my feelings hurt by an instructor, but I can hope that Boulders will do some sort of sensitivity training for anyone who becomes an adaptive instructor. I’m calling them this week to let them know what happened. I’ll update this post based on their response.
I think it’s safe to say that I should find another sport elsewhere.
Update (9/1/16): I know that internet comments should usually be avoided, but if you see the comments below, someone from Brooklyn Boulders has identified the person who said that I should try to use my leg spasms as one of the other adaptive climbers, and not as one of the instructors/volunteers, as I wrote above. While that does not excuse what she said to me (having a disability does not mean you can say insensitive things to other people with disabilities, or to anyone, really), it is comforting to know that my uncomfortable conversation did not occur with a staff member.