I literally did the homework on being gay in high school. My final presentation in U.S. History was an hour-long recounting of the gay rights movement, unleashed upon conservative suburban classmates who wriggled uncomfortably in their chairs all period. I gave the same talk the next year as Gay Straight Alliance president, and in the meantime read everything I could get my 17-year-old hands on about the vast and growing progress that ultimately enabled me to come out so young.
But in wringing every last drop of gay pride out of my academic experience, I erased disability from it altogether. I bought into the “my mind is fine” model hook, line, and sinker and reaped my rewards. The good grades piled up and reassured me that I was not only equal to nondisabled people — but just like them after all. So imagine my surprise when academia ended up putting the first cracks in that veneer. In researching my undergrad thesis, I came across a little thing called disability studies, and the work that changed everything for me wasn’t a memoir or a TED Talk, but an academic article.
Of course, the school system hasn’t exactly been kind to disabled folks. Disability rights pioneer Judy Heumann was once sent home from elementary school as a “fire hazard.” Just last week, 12-year-old Ehlena Fry had to go all the way to the Supreme Court for the right to bring her service dog to class (and got a rare unanimous victory, thank you very much). Right now that same court is preparing to decide just what a “free and appropriate public education” means under the Individuals with Disabilities Education Act. And of course we’ve got Betsy DeVos, who didn’t even know IDEA was a federal law until her confirmation hearings.
School worked for me, at least in part, because I already fit its preferred bill: white, upper middle class, ambulatory, verbal, “gifted.” For too many disabled students, education means encountering discrimination and underfunding in the very same classrooms that are supposed to empower us, out of the mouths of supposed advocates. That’s why I was excited to talk to Lisa, a 28-year-old “grad student, occasional writer, seamstress, reader, cat mother, and queer babe” who’s studying mental illness in 19th century female writers, and has a lot to say about academia.
Here’s how she introduced me to her PhD cohort:
“They’re gems of people, full of vitality and intelligence and fearlessness. They’ve supported me through difficulties (like the resurgence of PTSD symptoms that occurred around the time of my move to my city) and celebrated with me through successes (my first presentation, my first accepted conference proposal). We’ve challenged each other in class, laughed together (and in costume!) on Halloween, shared meals and cigarettes and the occasional misery. I truly love them, and I feel loved by them.”
Read on for more academic love, the fight for accommodation, and mental illness’ place in the disability community.
First off, your research sounds fascinating. What can you tell me about it?
Well, I’m a first year PhD student, so it’s a general idea at the moment. But what I hope to do is read mental illness in 19th century literature by women through a disability studies lens — not as purely metaphorical, but as a real representation of disability.
Do people tend to lean on the metaphor in your field?
Well, the seminal text in English literature is Gilbert and Gubar’s The Madwoman in the Attic. One way to characterize their argument is that the madwoman appears in 19th century literature as a sort of proxy of the author; she does what the author cannot, because she is so confined by social mores. I want to push back against that. First of all, reading illness as metaphor erases the reality of disability in the world. Secondly, metaphorizing illness becomes a problem for treatment. Plus mental illness is rarely, if ever, liberating.
All excellent points! It’s always struck me as kind of a cop out, people painting over the realities of disability and mental illness that they’d rather not deal with. Much easier to either demonize us or reduce us to symbols.
Right! All disabilities tend to get used that way.
“Reading illness as metaphor erases the reality of disability in the world. Metaphorizing illness becomes a problem for treatment. Plus mental illness is rarely, if ever, liberating.”
What does “the reality of disability in the world” feel like for you?
I am disabled by major depressive disorder and post-traumatic stress disorder. My reality is the constant negotiation of symptoms, adjustment of medications, dealing with side effects, dealing with stigma. It’s a heavy weight sometimes. I have a lot of support right now, though, so things are going pretty well for me. Even so, it’s a lot to bear. I don’t like to complain, but I suspect ableism has a lot to do with my reticence to be honest about the difficulties of living with a disability. So I’m not going to take it back!
How have people responded when you bring up those tougher realities?
It depends on the person. Generally, I surround myself with people who are kind and generous. I do find myself apologizing to my therapist a lot, though. She wants me to stop doing that.
Mine too, I’m with you there.
Negotiating symptoms takes a lot of time and energy. I take three medications that help, but even so, I fell into a depression over the winter break. My therapist said it was kind of like a mild dissociation; I just kind of checked out for weeks. I have to try to stay as on top of warning signs as I can, but even then, things slip through the cracks. I see a therapist and a psychiatrist, and I go to group therapy as well. I have a lot of nightmares because of the PTSD. Because of my medications, I sleep a lot. I could go on and on about symptoms, but there’s a taste for you.
“Why is the onus on us to measure every person’s empathy stores and judge whether or not they’ll treat us with kindness?”
I’m lucky that I’m in a place where most of the people are very supportive. That doesn’t mean I haven’t internalized a whole lot from outside my social circle, though. Negotiating with ableism is an ongoing conversation in my head. Part of that is deciding where, when, and what to disclose about my illnesses. I usually have no problem saying what I have, but more sensitive stuff like my hospitalizations takes a lot more thought. All of it takes up a lot of time and headspace.
Oh, absolutely. It’s a ton of work gauging how much people are going to be able to handle, and can get frustrating when they won’t take some responsibility for that work themselves.
Right? Like, why is the onus on us to measure every person’s empathy stores and judge whether or not they’ll treat us with kindness?
So with all that negotiation going on in the background, what does love mean to you?
As a bisexual woman with severe mental illness, love feels like an extended hand. Sometimes that hand is a high five, sometimes it’s a hand to hold, and sometimes it pulls me up when I’ve fallen hard on the ground. Love doesn’t flee from me when I’m doing poorly. Love stays, and it flows out of actions. It’s a resource that is constantly in flux between people, animals, things. I’m not sure why I called it a resource — maybe because it’s so necessary. I know that, for me, it’s something I need to both give and seek out in order to be well.
I haven’t had much luck romantically. My one relationship (a marriage) was a disaster that left me with PTSD, a cherry on top of my severe depression. I haven’t lacked in love, though. My most recent love story is that of my cohort. I love the way they accept me, even when I reveal things like my stays in psych wards or my divorce or even my bisexuality. Our relationships with each other have only deepened over time. I knew this transition to a new city, a new job, a new social scene, was going to be difficult. I mean, I’ve had two failed transitions before. So this time, I was determined to seek out people who I could love, and who could love me. I found that in them.
I love that they’re the ones you want to talk about! Most people don’t think of love extending into those kinds of spaces, especially academic ones that can be so competitive.
They are amazing! Yeah, “cohort” is such a cold word, but it feels so warm to me because of my experience with them. They’re understanding, but they also have shown me such an openness. They not only want to share their ideas, they want to share their lives. I remember once I was feeling so low, and one of them dropped everything to come over and eat ice cream with me. Recently I went to one of their houses and made his baby smile. I haven’t perceived a lot of competition among us, which is great. I learn so much from them in classes, too. It’s a combination of an intellectual and a personal relationship that only deepens because one informs the other.
“I think intellectual work needs to come with a commitment to caring for one another. That’s the environment where creativity and thought can really bloom.”
That sounds ideal, especially when you’re doing something so vulnerable together. Creating any kind of work takes a lot of trust.
Absolutely! Let’s bring love back to academia; or maybe let’s bring it in for the first time.
Yes! What would that look like?
I’m fortunate to have some professors who model it. It’s like you said, trust is a major part — and how can you trust without some element of love? I think it comes down to care. I think intellectual work needs to come with a commitment to caring for one another. That’s the environment where creativity and thought can really bloom.
Do you find that ableism crops up often in academic environments? I think that’s something that gets talked about more with younger students, but I’m curious about your experience in higher ed.
I think it does, in subtler ways. The fact that disability studies gets written off by more conservative academics is proof of that. I’ve only had one quarter’s experience in grad school, but I do find strange things, mostly to do with ignorance. People will ask strange questions that are based on ableist assumptions. I’m about to cut back on medication under the care of my doctor, which will probably result in stronger or more symptoms. I’m afraid of what will happen if I need to slow down. At a previous master’s program (for education), they were unwilling to make accommodations for me. I’m going to try to be like one of my heroes, Harriet McBryde Johnson, and fight to be accommodated.
“Why is a hug or a kiss seen as so much more loving than spending the time to give comments on a paper full of cherished ideas? Than sharing a drink to celebrate a quarter’s hard work? Than creating something together?”
Ultimately I believe it is worth fighting for accommodation, and those entering academia must know that it will be a fight. I’m in the process of reflecting on whether or not I want to fight throughout my entire career — and really, my career path is at stake. For those of us with severe mental illness, fighting for accommodation will always be a part of our lives. I do believe there are career paths that are more accommodating than academia. It’s a personal choice as to whether or not the fight is worth it in the end.
Harriet McBryde Johnson was a badass and a treasure, so excellent choice. Are most of the people in your cohort nondisabled, are there other disabled folks, or is it a mix?
I’m not aware of any disabilities in the members of my cohort. There are some disabled people in the department, though. Not many.
“Ultimately I believe it is worth fighting for accommodation, and those entering academia must know that it will be a fight.”
Have the able people in your cohort been more understanding than those you’ve encountered elsewhere?
Yes, the people in my cohort are definitely more understanding than people at large. I think it’s a combination of luck of the draw and of intellectual curiosity. Their openness to learning about various ways of being makes all the difference. Even if they haven’t had personal experience with severe mental illness, they’re willing to put forth the energy to empathize with me. In the same way, they’re willing to listen to me talk about disability and to ask questions and really listen. Such jewels.
What makes you say that there’s love between all of you instead of just, say, creative or intellectual support?
I’d like to expand the definition of love to include things like creative or intellectual support. I think I originally said “love” because we have a personal relationship that extends beyond intellectual spaces, but it occurs to me now that our love for each other is in the supportive actions that we do for one another. Why is a hug or a kiss seen as so much more loving than spending the time to give comments on a paper full of cherished ideas? Than sharing a drink to celebrate a quarter’s hard work? Than creating something together? I suspect it’s because heterosexual romantic love is privileged above all other forms, no matter how life-giving they are.
“Mental illness doesn’t get much room in disabled spaces, probably because there’s this myth that mental illness isn’t real. I think we all need to work to change that.”
It can be hard for me to accept the fact that I’m lovable. My mental illnesses affect the way I feel about myself. As a result, I’ve had to consciously work on loving myself the way I love others. Developing coping skills to help me accept the love I’m given has helped me to appreciate that love more deeply. Also, working through my PTSD with my therapist and group has given me a chance to develop conscious awareness of the ways that I’m still reacting to my trauma, and thus to deepen my relationships across the board. Overall, I feel acutely aware of love’s power because of my illnesses. I appreciate that.
Last thing: I’m curious how you came to identify as disabled and with that community. Many folks both in and outside of those circles are quick to dismiss mental illness as a membership card, so to speak, and I think that reveals a lot about how ableism grows, even in our communal spaces.
When I was younger, maybe eight or nine years ago, I identified as disabled for a period of time because of a long-term physical illness. That’s when I first came into contact with the disability rights movement. I read all that I could about it, because it was so affirming to finally hear about the okay-ness of all bodies. Even though I have dealt with MDD since I was fourteen, I didn’t really identify as disabled in that sense until I read Too Late to Die Young, again by Harriet McBride Johnson, last year. Before that, I bought the ableist narrative that my illness was a personal problem rather than a social one. In one of her stories, she talks about a disability rights group she was a part of that had a man in it who identified as “crazy” and had experienced multiple hospitalizations. It was like I was knocked upside the head. I was like, “Ah! It’s me!” That’s when I started up my reading again.
It’s definitely been my experience that mental illness doesn’t get much room in disabled spaces, probably because there’s this myth that mental illness isn’t real. I think we all need to work to change that.