Dean Altman
Asking for help from other people, especially strangers, is hard—so hard, in fact, that many of us would never consider doing it. But for some people, that’s simply not an option. They need to rely on the kindness of strangers to get through each and every day.
Recently, a woman named Erynn Brook shared a story on Twitter about how a stranger suffering from epilepsy asked for her help during a train ride because she was just about to have a seizure.
Brook, who said she wrote the thread as a way to process her feelings about the incident (and also because she was anxiously awaiting ultrasound results for her sick cat), described how the young woman approached her with a piece of laminated paper titled “my seizure plan.”
The point of Brook’s story is not that she’s a compassionate person (although she very clearly is), it’s about a society that doesn’t make things easy for people with disabilities. Most of us have no idea, and will never have any idea, the kind of struggles that some people endure.
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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 yourstop?” She asked.
— Erynn Brook (@ErynnBrook) April 4, 2019
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?”
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
She’s 18.
I check my phone and start timing her seizure. I sit down. My stop comes and goes.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
She just needs to make it upthe 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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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 waved through the lobby window as she walks, slowly, to the elevator.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
Brook reflected on the ways that we’ve been conditioned to just dial 911 when someone needs help, and think that’s enough. Sometimes it is, of course, but other times it could just exacerbate the situation.
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
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.
— Erynn Brook (@ErynnBrook) April 4, 2019
She pointed out the horrible fact that people with disabilities are more at risk for all sorts of violent crimes. Just think of the woman seizingand how, if there were nobody to look out for her, she’d be completely vulnerable one to four times every day.
[cn/tw: assault]
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.https://t.co/xLbCttZsf5
— Erynn Brook (@ErynnBrook) April 4, 2019
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 build it this way.
— Erynn Brook (@ErynnBrook) April 4, 2019
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 tohelp her home. Just enough to not inconvenience.
— Erynn Brook (@ErynnBrook) April 4, 2019
Don’t get me wrong, emergency services are great and we should use them when we need to. That’s not the point of this thread.
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.”
— Erynn Brook (@ErynnBrook) April 4, 2019
“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.
— Erynn Brook (@ErynnBrook) April 4, 2019
Brook writes that merely accommodating someone in need is “not good enough.”
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.
Build something better, folks. Build a better world. ????
— Erynn Brook (@ErynnBrook) April 4, 2019
And she made sure to retweet a person who reached out to share that, in some cases, 911 is still absolutely the best resource.
Because different people have different needs, please readthis. https://t.co/d2wnQFti7Z
— Erynn Brook (@ErynnBrook) April 4, 2019
By the way, the cat is fine!
(P.S. thank you all for the concern about kitty. Just got results back and no blockage! It was a $2000 hairball situation but we’re out of the woods! I uhh… didn’t expect this to go viral, I was just kinda thinking out loud… kitty is fine and thanks you for your well wishes!)
— Erynn Brook (@ErynnBrook) April 4, 2019
Brook’s last bit of advice was for people to follow disabled folks on Twitter (she suggests searching the hashtag “AbledsAreWeird).
(P.P.S. This is really taking off and I just wanted to say, please follow disabled folks on here and listen to them. I recommend looking through #AbledsAreWeird if you missed it for a lot of great voices, stories, examples and awareness and a way to find who to follow for more.)
— Erynn Brook (@ErynnBrook) April 5, 2019
If we all took more time to look out for each other, the world could be a much better place.
h/t: Twitter: ErynnBrook
