“Do you want to go get boba after this?”
Who knew a question could be so harmless yet so problematic at the same time? I bite my lip, racking my brain for a way to accept her offer, but I come up empty-handed. “Yes,” I think. “Yes, I would love to hang out with you for a while longer.”
Of course, it’s not that simple. My attendant is coming in about 20 minutes to take me to the bathroom and give me a shower during her two-hour shift, and at this point, it’s too late to cancel. Either way, my next attendant will arrive in five hours, and my pee math says I won’t hold out that long.
“Pee math” is the precise calculation of how long one can go without needing to pee. It’s a legitimate science, complete with dozens of critical variables and meticulous experimentation. It’s also something that I have had plenty of experience with. As someone born with spinal muscular atrophy, a neuromuscular condition affecting how my muscles communicate, I have always relied on the assistance of a power wheelchair and a slew of personal care attendants to help me with my personal care and daily activities. These include bathing, dressing, transferring into bed, and of course, using the bathroom.
Because of the overwhelming support of my family, managing my care has never been a problem in the past. There has always been someone around to help me take care of my needs so that I could participate in everything I wanted to. In high school, my parents consistently worked around my schedule so that I could go to class socials, see school performances and attend Model UN conferences. During the school day, my assistant principal generally made sure I had the help I needed both in and out of class.
Even then, I found it a struggle to rearrange my attendant schedule so that I could use the bathroom at brunch instead of lunch whenever I had club meetings or school newspaper interviews. Making sure people were available at the times I needed, and that they were properly trained to help me, was a logistical nightmare.
At least I had that luxury. Now, I’m lucky to have someone to take me to the bathroom, let alone come at a convenient time for me. Having to depend on others for these basic tasks means I have to plan days in advance to do simple things, such as getting boba or walking to CREAM. Spontaneity doesn’t even exist in my vocabulary like it used to, and it’s been tough to form lasting social connections as a freshman without being able to spend time with people whenever I want to.
Peeing, however, is only part of the equation. If I ever go somewhere, I need to make sure that I have a way to get there (you can’t really carpool with a 300-pound wheelchair), that the place is accessible (it might not be, especially if it’s a house) and that I have the energy to actually go and come back (I fatigue around 10 p.m. even without doing anything).
That’s the thing — even though the Americans with Disabilities Act and a host of other legislation intend to help people with disabilities lead “normal” lives, there are so many practical details to get bogged down in that can make it impossible to participate in “normal” activities.
One student organization that I’m part of hosts an annual retreat, this year taking place near Yosemite. At first, I doubted that I could make it because of the logistics of bringing a caregiver and having an accessible space. But when I reached out, the students involved in the planning immediately began making arrangements for me to attend by contacting the residence where everyone was staying and looking into nearby accessible accommodations. It was heartening to see other people wanting me to have the full social experience and taking action so that I could do so. I’m so used to planning these things by myself that having a little help means so much.
It may seem like all the effort to plan every social outing is a high cost for leaving home, but I wouldn’t change a thing. The fact that I can even think about living on my own would have been remarkable just half a century ago, and I’m all too aware of the long struggle people with disabilities faced to get to this point. Failing to take advantage of that progress now would only be a step backward. Certain politicians and businesspeople oppose accessibility because of the costs that come with it, and I wouldn’t want to further their case by not availing myself of accessibility services.
Boba, of course, has a lot of liquid in it, and I know that it’ll confuse my pee math further. I want to spend more time with my new acquaintance, but I wouldn’t enjoy it right now, under these circumstances.
So, I smile and say, “I’m kind of busy right now. How about Friday?”
