A friend called me, pretty freaked out, from the waiting room of the sliding scale clinic where all the broke queers in my community get healthcare. She was waiting for some scary tests – reproductive problems, could there be cancer? The familiar voices inside her head were loud and full of worst-case scenarios. Breaking things down logically wasn’t so helpful. So I told her I was going to send Rosebud her way. Rosebud is her imaginary psychiatric service goat. We dreamed up Rosebud, and her comrades, around the time I discovered the psychiatric service dog society on the internet. The idea that I could get a letter from my therapist, train a little dog, put a cape on it, and take it everywhere, was extremely soothing, and helped me keep a sense of humor and hope during some hard times. Soon we were brainstorming a land project that doubled as both an artist retreat center and a breeding farm for service goats to help out all our (self-identified) crazy crip friends. As the dreams got bigger we felt lighter and lighter. Whenever shit gets overwhelming, we know we can call on Rosebud, and each other, to break the cycles of despair.
I have such a profound love for the kinds of friends I can call from a waiting room, or the doctor’s office parking lot. We get each other in a way where we’ve been through it too, where we’re not the patients explaining to the able-bodied friends what it’s like to have another pain flare, or try yet another drug, or to have the psychiatrist register big alarm when you talk about hoping to get pregnant one day, or to ditch the doctor altogether when she threatens to call the cops if you ever mention being suicidal again. Those friends who know what withdrawals are like, who know that sometimes acupuncture doesn’t work, but sometimes it does, who know what it’s like to quit your job because you have to have less stress in your life or you’re going to tailspin into crisis again.
I’ve come to think of these intimacies and moments of trust as a form of access intimacy, a term first coined by Mia Mingus, a physically disabled Korean-American writer and activist. She describes access intimacy as
“That elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level… It could also be the way your body relaxes and opens up with someone when all your access needs are being met.
Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives. Together, we share a kind of access intimacy that is ground-level, with no need for explanations. Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access.
Mia writes out of a deep grounding in disability justice, and from her experience as a queer disabled woman of color struggling primarily with physical disabilities. I am interested in how we expand the conversation to include people with serious chronic mental health challenges, whether or not we identify with diagnoses. I want to talk about access intimacy on a day-to-day level, and also how it functions when folks go into extreme crisis.
I think access intimacy is one of the most powerful things support networks like The Icarus Project can create for folks who participate. Sometimes I feel like it’s missing in parts of the alternative mental health movement that focus so much on resistance to the prevailing medical models of mental illness and on promoting counter-narratives of full recovery that there isn’t space to focus on how those of us who continue to experience madness, suicidality, post-traumatic stress, and other big emotional extremes deeply support each other.
What do access and disability mean when we’re talking about mental health?
For many years I, and so many others I know, have resisted identifying as disabled for very good reasons. If you believe your distress is largely a result of family trauma and/or capitalism, racism, and other forms of structural violence, why would you identify as disabled? If you frame your distress as a form of spiritual or existential crisis, why would you use the word disabled? If you believe we all have the capacity for full recovery, or nothing was ever wrong in the first place, why would you identify as disabled?
For me, the reason is to be part of an amazing and supportive community with revolutionary politics that include an emphasis on creating communities of care. To be part of a group with a long history of organizing for liberation and human rights. Identifying as disabled also allows me to acknowledge the recurrent and sometimes severe nature of my struggles, and to seek structural changes that wouldn’t make it so hard to be in this world. Instead of trying to assimilate and “pass” as normal, it is so much more helpful for me to think about how to get support and get access needs met.
What exactly does access mean in terms of mental health? Often folks think about access in terms of physical disabilities – making sure buildings have elevators and wheel-chair ramps, making sure gatherings are scent-free, have ASL interpretation, etc. In terms of mental health, I think access needs can be things like flexible work schedules, moving slower in organizing and academic spaces, allowing more room for debriefing after traumatic events or direct actions, recognizing that some folks get overwhelmed by too much sensory stimulation or too much speed, etc. People in your life who know to ask about your sleep, and tell you about theirs. The person you can call after the psychiatrist intake, or about the social security forms, or the campus disability office. The person who knows to carry snacks and make sure you eat when you start freaking out. Who gets it when you need to leave crowded places. Who is willing to walk with you when it’s too overstimulating to drive or bike. Who brings skullcap and rescue remedy everywhere. Who feel closer instead of disappointed when you have to stop and talk during sex cause you’re about to dissociate or cry.
When I’m closer to crisis, access needs can be things like help getting out of the house, help cooking meals, help reaching nature, help making all those incredibly difficult phone calls. I want to hear what other folks think of as access needs around mental health.
I also want more space to talk about the emotional distress that arises from physical challenges – chronic illness and injury, disabilities that are life-long or sudden. When I began to struggle with a lot of chronic pain and illness, I couldn’t participate fully in so many things that were important to me, from trainings to birthday parties, work to weekends. I spent a lot of time in bed. The course of the pain and illness were unpredictable, so that I never knew when I’d be well enough to be in the world, or when I’d be in too much pain to even wash dishes or read a book.
The despair, isolation, and uncertainty that so often come along with those struggles can be totally overwhelming. A few people in my life got it; we could have dates that involved me laying on a heating pad. We could bring each other food, share painkillers, cry, be flexible when pain or fatigue required canceling things or laying low. Many of the other folks in my life were very able-bodied and exceptionally productive, whether as organizers, writers, or media-makers, and to them I just about disappeared. They are all fabulous people with the best intentions, but it still felt like they did not get from the inside what it’s like to struggle with disabling physical and psychological conditions. There were conversations we couldn’t have, or one-sided conversations where I explained and they listened, but did not know. And then I read Mia’s article on access intimacy, and something clicked into place.
So much of emotional distress and disability are marked by profound isolation. I want us to create a world where we nurture access intimacy. Where we invest in communities of care, not just self-care. Where we can laugh about the hard stuff. Where we can text each other reminders about our invisible service goats and know exactly when they’re needed.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Great Article, Jacks! Thank you.
You said so much in this piece that it’s hard to know where to begin…
The concept of ‘access intimacy’ is so powerful, and so needed in our communities…. greater understanding of what specific needs some folks have when it comes to modifications/adjustments at a workplace… and or course more caring… something all of us so desperately need.
Thanks for a wonderful post!
I’m not sure what fertility care is offered where your friend was seeking care, but where I am it is competent, nor disrespectful, offering home birth options, going somewhere on insurance and actually being helped with a home birth? or low wait times for planned parenthood as well. As far as the icarus project, I haven’t found access needs there. I have had some good experiences, but I have also found that because it is a free site, people do use it to further stigmatize the mentally ill, as sex workers, ex convicts, and pedophiles. In other words, people use it to justify criminal intentions, when what the mentally ill need most, is to finally be separate from moral concerns. Do people who are raped not come down with heart disease?
To be separate from moral concerns? I strongly disagree.
Morality IS NOT an enemy but a very sick and dysfunctional world society is hell-bent on making morality wrong.
And THAT, makes ME furious.
Thanks for articulating something I’ve experienced but never accurately described. I’m a psychiatric survivor who has not identified as mentally ill in more than a decade…but the aftereffects of 14 years of polypharmacy and hospitalizations pervade my entire being. I had to go back on disability three years ago because my damaged body simply could not withstand a 40-hour work week. About a year ago, I volunteered to teach knitting at a weekend crafts workshop for women with cancer…and I was blown away by the experience. These women experienced many of the difficulties that define my own life. They have had their lives rudely interrupted, even usurped, by an illness over which they have little control, and for which the treatment is often far worse than the disease. I went home and wept. I hadn’t felt like I fit in anywhere since I left the mental health system more than a decade before.
It was access intimacy, of course. Such a profound connection. I wish I had more of it in my life. This disabled psychiatric survivor thing is lonely, lonely gig.
Thank you, Jacks. There is no more comforting or relaxing feeling than knowing you are with people who share your lived experience on that deepest level. No words are needed. Compassion and understanding are simply free floating.
I love this piece Jacks.
I also support what you say about disability
Jacks, I’m interested to know, have you experienced any criticism for identifying as disabled and not recovered?