This post is a twitter thread I wrote today.
I’m waiting on kitty ultrasound results and trying to distract myself a little bit so I’d like to tell you a story about something that happened last night, in the hopes that I can process my feelings around it.
I met a girl on the train last night.
I was on my way home after work. It’s about 10pm, and the subway is pulling up to my stop. I’ve been stressed about my own stuff for days now and I’m in my little bubble and just as I stand up the girl across from me starts talking.
She’d been looking at me and I hadn’t really noticed. Her lips were barely moving, but I took out one earbud and said “pardon?” And she said “are you getting off soon?” And I said yes. The train was mostly empty. But then I noticed she was holding a laminated sheet of paper out.
At the top it said “my seizure plan”. I blinked at it then looked up at her. “Are you having a seizure now?” I asked. “No, but I’m about to.” She looked down at the monitor on her finger. “Can you sit with me until your stop?” She asked.
She mentioned her stop was 3 stops away. I asked if she would like me to ride with her to her stop. She said she didn’t want to bother me. I asked what she would do when I got off, she kinda shrugged and said “ask someone else. Maybe her? She looks nice. Can you ask her for me?”
Then she seized.
She had already moved her purse out of the way and folded her scarf in a place to catch her head as she slumped over. I sat next to her and read her seizure plan.
I check my phone and start timing her seizure. I sit down. My stop comes and goes.
This seizure plan paper is like an anchor. It says what to do, what not to do, how long seizures might last, what medication she takes if they last too long, what steps to take if she becomes non-responsive. She comes out after 3 minutes.
I tell her I’m just going to ride the subway with her to her stop, and if we miss it, don’t worry, I’ll sit with her until the end of the line if need be and we’ll just make the trip back together. She thanks me. I ask if she has her medication on her. She says she has one left.
She mentions that she needs to get a prescription refill. I say prescription refills are so annoying. She nods a bit, tells me a little bit about how the monitor on her finger works, and seizes again. I go back to reading the seizure plan. I’ve already read it but it’s an anchor.
It says she gets these seizures 1-4 times a day, and each episode lasts 10-60mins.
Just think about that for a second. Think about being randomly completely vulnerable multiple times a day, and this is just… every day.
She comes out close to her stop. I ask her if she wants to get off. And she says “I’m just so tired, I want to go home.”
The worst thing I could’ve done to this girl in this moment was call emergency services. She’s so close to home. We get off at her stop and sit for a bit.
She places her folded scarf on the back of the chair and positions herself just so. She tells me “if it gets real bad I may have to lie down on the floor.” And seizes again. I put my stuff down and stand so I can catch her if she slips off the chair.
I’m a big sister and a woman in the world. I’m either sitting with her until she’s completely ready to get up and walk away on her own or we’re gonna move together in shifts until she gets to her front door.
There’s no way I’m leaving an 18 year old on a subway platform alone.
She just needs to make it up the stairs. She says her condo is right outside the exit. Offer to walk her up the stairs, at least. She asks if I’m sure and says again that she doesn’t want to bother me. We go slow and chat. This is her first seizure today, but yesterday she had 2.
We get to the barrier and I say. “I’d like to walk you to your building door if you’ll let me.” She protests again, but not much. I reassure her that I don’t want to come inside or anything, I’d just like to make sure she gets home safe and I’ll leave once she’s in the building.
A few times she mentions how tired she is, and how close to home she is. Going up these stairs we keep an eye on her monitor. A train goes by and she covers her ears. Loud noises are a trigger for her. I ask if fluorescent lights are too, she nods. We make it out of the station.
She tells me that one of her seizures yesterday happened at the gym. THE GYM! I don’t even go to the gym and I have way less barriers to either getting to or being at the gym than she does.
This girl is just living her life with a laminated paper as her only defense.
I walk her to her building door and open it for her. She says “thank you for staying with me and getting me home safe.” I say “of course”, and we wave goodbye. Her scarf is draped around her shoulders now. She waves through the lobby window as she walks, slowly, to the elevator.
I have so many feelings. And they keep coming back to that scarf. That’s the image I see. How it was pre-folded before she even asked for help. How she positioned herself to fall on the scarf pillow again and again.
She was fully prepared to go it alone. I didn’t help her, not really. My job was to make sure that no one interrupted her getting to her door.
She was just trying to get home.
It’s not a story about me being a good person. It’s not a story about how brave she is (though she clearly is), it’s a story about human needs, through the lens of disability, and how accessibility is not the same as acceptance or community care.
We’re taught to call 911 when something looks bad and we don’t know what it is. And if I hadn’t heard her, if she didn’t have that laminated paper, maybe I would’ve done that when she started seizing.
And this girl who’s just trying to go home because this is her daily life, would’ve been burdened with loud noises and fluorescent lights and maybe an ambulance trip further from her destination and a hospital bill and who knows what else, when she just needed to go home.
This girl has seizures more reliably than I eat breakfast.
And she’s just out there living her life as best she can. I’d be lying if I said I didn’t think about all the ways she was vulnerable, in public, alone, at night, all the dangers we associate with those things.
There is no policy or program structure that addresses the high rates of assault for disabled folks. Sexual violence, violent crimes, domestic violence, are all statistically more likely to happen to people with disabilities.
I’m already pre-wired to go into big sister/soccer mom mode anywhere, any time, for anyone. If I had a bus I’d just be DD and make sure everyone got home from the bar okay.
But… we don’t build our world that way. We built it this way.
We built a world where an 18 year old who gets seizures 1-4 times a day, is taking the subway home, alone, and she folds her scarf into a pillow before asking a stranger to sit with her until the next stop. Not her own stop. Not to help her home. Just enough to not inconvenience.
We built a world where I could hit an emergency alarm button and walk off at my stop, feeling like I just saved this girl’s life, who didn’t need saving, without losing a minute of my day, if I wanted to. We built a world for convenience, not community.
Don’t get me wrong, emergency services are great and we should use them when we need to. That’s not the point. The point is that scarf. That piece of paper, and the way she said “I’ll ask someone else when you leave. Maybe her? She looks nice.”
“She looks nice.”
It took maybe 30 minutes out of my day to make sure she got home. And she didn’t need me at all. She got there on her own.
I guess I looked nice too. But she didn’t want to ask too much. She didn’t want to ask me to stay with her an extra 3 stops.
Accommodation is the bare minimum. If I sat with her until my stop and then left, that’s what accommodation looks like.
It’s not good enough. Not for me, not for her, not for community and not for our world.
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