How To Be Nice to Your Disabled Friends

and how that connects to revolution

Photo by Ta Z on Unsplash

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1

My semester ended on Tuesday and I really loved my students this year. I had several of them for two semesters, and I always feel these students learn the most about writing, reading, and thinking. It may also be because I have enough time to observe how their writing changes and grows. I also had many students this semester for the first time, and I loved them too. It was a good year for community in my classrooms and I can’t do that without their deep investment, humor, and engagement. I will miss them.

For many reasons, it’s been a weird and difficult academic year. Trump is our president once again. Academic freedom on campus is under attack, students and faculty do not feel we can talk about difficult subjects including, but not limited to, the ongoing genocide of Palestinians. I’ve had conversations with students this semester that I’ve never had in my 30 years of teaching. Here are a few of them.

After talking with my union colleagues, I advised my international students to reconsider their travel plans outside of the country over spring break because we couldn’t guarantee that they would be allowed back in the country. My students asked me what I would do if ICE came to our classroom. I said I hoped I would lock the door, hide them in the corner, demand to see a signed warrant, start screaming, and also record everything. I forgot to say we should probably all link arms too keep anyone from getting pulled away from us.

I don’t know what I would actually do, but those are my plans. I might be a total coward, and pee my pants. One can never say what one will do when the shit hits the fan. In some ways we’re all seeing this now. We also talked about what each of us could do to protect democracy in America and abroad. Some of them were very interested in this conversation, and some of them looked like they wanted to die. I kinda wanted to die after that class.

I’ve had to train myself not to get overly analytical about facial expressions in the classroom, while at the same time paying attention to body language and being curious about it.

Mostly we wrote a lot of things—a big research essay, poems, restaurant reviews, “embarrassing moment” pieces, Writer’s Notebooks, freewriting, focused freewriting.

Another big thing about this academic year for my students and me (and it has affected them) is that something bad happened to my back. I can’t remember if I’ve written a big post about my back or not. Oh well, I shall press on. After a Pilates class in October, something on the left side got pulled. I thought it would heal on its own through stretching and continued Pilates, and it kinda did, but then would flare up.

When I went to Berlin for most of January for a research grant, I walked more than I have in a very long time, and maybe sat in bad archive chairs that were very hard. On the plane ride home, the pain became unreal, and so by the end of January when I returned I knew I had to figure out what was going on.

I’ve never had back pain before. I have like ten other disabilities (dopa responsive dystonia, depression, anxiety, irritable bowel syndrome, dry eye syndrome, flat feet, and probably a few things I’m forgetting, oh, menopause, yeah, I’d call that a disability). Back pain is the worst pain I’ve felt since I was untreated and undiagnosed for my movement disorder, so in a way, very bad pain is a childhood story for me. This new pain has caused me to think of that long ago pain.

Maybe every new pain carries with it the echo of an old pain.

2

To get help, I somewhat randomly chose the NYU Langone Spine Center because I teach at NYU and thought I could get care for free or almost free. Not so, I still owe those fuckers $400. I saw a very confident, fit, tall, white male doctor in his mid-to-late thirties. He seemed unconcerned, had me get a x-ray, and prescribed physical therapy. He said my x-ray looked fine. He prescribed me nothing for my pain, even when I asked for relief. When I wrote to him on MyChart desperate for more help, he had his assistants call me. He never responded himself.

I started physical therapy, and did the exercises every day as prescribed. I started walking every day as prescribed. I only wore the softest, most supportive sneakers. When none of that worked I went to a new physical therapist outside of my insurance, who gave me harder exercises. I did those for three or so weeks, until I was in constant pain when sitting, getting up from sitting, and sometimes walking. Lying down was my only comfortable position. Both physical therapists said this was normal and would take time to heal. I still had nothing for my pain except Aleve and a heating pad. I took CBD/THC gummies which helped a lot, but I couldn’t teach high and got tired of feeling high.

In April, my friends started to really push me to get help for my pain. Thank you

Elke Dehner

and Lex Lancaster for your continued asking of questions and your concern about my pain that helped me to find a new doctor, get a real diagnosis, and demand pain treatment. I made an appointment with a female doctor, who was in the same practice as someone I saw over ten years ago when I had plantar fasciitis.

I came to her office at a level 10 out of 10 of pain, crying and wincing. She looked at my x-ray from the previous doctor and said, “It looks like you might have a herniated disc. We should do an MRI, and I can give you steroids for you pain. After the MRI, we can do a cortisol shot so that you can have a break from the inflammation.”

Just like that, someone cared about me and wanted to help me with my pain. She actually read the x-ray. Since then, I’ve had the steroids, MRI, and cortisol shots. I’m waiting for the pain relief from the cortisol shots to kick in. I’m still in a lot of pain. I can’t really sit for more than 30 minutes without excruciating pain. I’m writing this lying down. I have arthritis and inflammation around my spine, likely because of a small herniated disc and/or they are kinda the same thing. I have to strengthen my core and butt muscles and it’s going to be a journey.

I’m no stranger to American medicine and how much women, especially Black women have to suffer to have their pain treated and taken seriously. Still, I can’t believe I’m on month eight and just now starting to have some help and hope. I’ve also come to understand that some things will forever remain a mystery and will not get better. I’ve had dry eyes for almost four years. I’ve seen at least ten different kinds of doctors and no one has figured out a way to help or what’s wrong. I’ve given up on that illness and just use a lot of eye drops and tear up all of the time.

I was honest with my students about my pain, though I tried to spare them the details. I had to cancel a class to get the MRI. There were things I had to do in the classroom that hurt me—sitting, standing, writing on the board. I sometimes ask students to print out assignments still because it helps my eyes not dry out so quickly if I spend less time on the computer. They were kind about it, and sometimes checked in on me. One of my disabled students stayed after class on Tuesday to thank me for making a space for her to ask for accommodations. She was sometimes a little prickly with me, which I came to understand as her own frustrations with herself and the physical stuff she had to deal with.

We hugged and I said, “I wanted to push you, but also give you space to explore on your own. How did that go? I’m not sure I got the right mix.”

“It was a good mix,” she said, and though my back was throbbing, I was happy.

I realize this is pretty much my teaching philosophy. “Push but with space to explore.” When students are particularly freaked out, I usually offer an accommodation—an extension, an opportunity to abandon the thing they’re writing about to find something new, or an alternative project if things feel really awful.

I don’t see the point of making their lives more difficult. It’s a writing class. There are so many bigger problems for us to fix in this world. Writing is my life, but it won’t necessarily be theirs. Perhaps I’m too accommodating—this has been true in my parenting at times. I’d always rather talk about a problem, than fight. I want to know what’s going on, no matter what it is.

Since the world, especially this country, gives so few accommodations, I want to give them as often as possible.

3

This week because of my pain, I had to give up a trip I wanted to take to a place I’ve never been. It was for work, but would have had pleasure in it too, and likely some pleasure in the work itself. But the flight was long and I couldn’t imagine how I would sit for that many hours without dying of pain. How would I sit at the conference? Walk all around a new city?

I took me forever to decide what to do, and I asked everyone close to me for advice. I asked my new doctor, the expensive PT, and my new acupuncturist.

Champagne problem, I know.

Photo by Toa Heftiba on Unsplash

I like it when people give up.

Sometimes at readings, younger writers will ask, “How do you not give up?” Lately, I say, “Writing is very hard, and you should totally give up if you want to!” I also recognize that I am someone who hasn’t given up very often. I’m trying to do more of it.

It was so powerful when Simone Biles decided not to compete in the 2021 Tokyo Olympics. When Naomi Osaka withdrew from the French Open in 2021, it was another turning point. I admire all of the drag queens who walked out of their season of Drag Race, just as much as the winners. I see you Adore Delano and BenDeLaCreme, Heidi N Closet, and Isis Couture!

Disabled people have been giving up for centuries. We’ve also persevered against enormous challenges and sometimes very little help. We know our limits, and sometimes it can take us a little while to figure them out, but listen to us when we say we can’t do something. Believe us when we say we’d love to come, but the pain of being there is not worth it. Know that if you guilt us, we will gradually cut you out of our lives because who needs more guilt? Help us understand our confusion, but don’t tell us what to do. Understand that we are often sad too that we can’t do something we really want to do.

And if you are a person who has to make plans in advance and gets very upset when plans change, know that it’s unlikely you will enjoy being my friend. Also, do you really need to be this way with planning? What’s that about anyway? Know too that if you are constantly telling us that it’s really hard for you to live your life the way we do—without really knowing what each day will hold—you’re making it worse for us.

For most of my life as a disabled person and a woman, I’ve had people tell me not to give up. This week around a trip that really is of no consequence, I heard too much of that language. Surprise, surprise, it pissed me off. Likely because it’s poking at little girl Carley who actually couldn’t walk, but was sometimes put in situations by idiots and then told, “You can do it! Don’t give up! Walk across this room with the incredibly slippery floor while everyone stares at you. Oh shit, you fell!”

I personally loathe a pep talk about “trying harder” or “persevering” especially when I’m in great pain. I get dizzy with rage when someone says, “You’ll be fine!” In athletic situations I’ve had to unlearn years of feeling like I sucked at every sport because I couldn’t do it instantly. “No pain, no gain.”

How about a push and then space for exploration? I often defy my own expectations, when I’m in a space where I can set the physical boundaries, where I can say no I can’t do this. I often need people to tell me I don’t have to do something, and then sometimes I will end up doing it. But if you push me hard without recognition of my very real limitations and fears, I will hide.

When I struggled to breastfeed my kid and ended up pumping for six miserable months and feeling like a failure as a mom, well-meaning friends (I know we all mean well, I really do!) kept saying “Don’t give up! You can do this!” My best friend finally said to me, “Why are you killing yourself trying to make this work? Give up!” I did, and my life as a mom got so much better.

4

What is a general strike, but a massive giving up?

If we keep falling for the myth of individual exceptionalism—bootstraps, the American Dream, you can do anything if you put your mind to it—how will we achieve collective action, revolution, or any meaningful changes to the system?

We need to get better at giving up so that we can get more of what we want. I know it’s counterintuitive, but trying so hard at everything has pretty much destroyed American women. Oh hey, American women are giving up having children. That’s something, not that men in power will actually listen to and care about why.

What if the MAGA people had been raised with some compassion and made to feel that they could have some accommodations in this life?

Are we a nation of abused children?

Little boys who were never allowed to cry make great authoritarians.

Okay time for me to give up on this post and go outside!

Enjoy the typos!

xoxo

Carley