What is 'normal'? In this fortnightly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series here.
It was at a conference in 2019 that after a night of tossing in bed, I managed to drag my aching body to the breakfast table. A well-known disabled feminist who uses a wheelchair and lives with pain asked me, "How are you this morning?" I smiled and said, "I'm in pain, but it's okay."
Her reply has stayed with me ever since. She said: "Hon, it is not okay and it is okay to say it " pain sucks."
So as we begin a month dedicated to pain awareness globally, I thought I would start on this note: pain is a hard thing to live with daily. September is the month where individuals who live with pain speak up about it, bring to the front our ongoing discomfort and talk to each other about what a life with pain looks like.
I'm conflicted about this awareness month, not because I don't believe we all need more awareness about pain (we do), but because I feel conflicted about my pain. When I first began thinking, writing and reflecting on my chronic pain, I was overwhelmed with loss. Loss associated with mobility, with limiting my tasks and with learning a new way of life. It was very hard to accept the changing realities and uncertainties of my life. Acquiring a condition that was disabling meant navigating a difficult path of embracing acceptance and frustration.
Most of this shift happened because of the books I read in that moment. Reading about people living with pain, navigating their complex realities has helped me to navigate mine. But it isn't so easy. As much as I enjoy and embrace the many virtues of being part of the disabled community, the everlasting wisdom I gather from my fellow members of the community, some days I dream about waking up not in pain. And it has gotten me thinking about the medicalisation of disability, and therefore, the constant search for a "cure".
Writer, speaker and activist Eli Clare has dedicated a lot of his work to complicating the relationship between disabled people and the medical system's search for a cure to fix bodies-minds that are not "normal". He says, "Our stories about using medical technology are way more complicated than the public, political rhetoric allows for. Talk to anyone who lives with chronic pain or who is homebound because of multiple chemical sensitivity, and it is clearly more complicated. Some folks are desperate for cure after years of being homebound by the nature of their impairments " by intense pain or being made extraordinarily ill by petroleum-based products for example " or if not a cure, then effective medical management."
The medical language around disability is very hard to escape. As someone who has spent years engaging with the medical system because of my conditions, I cannot delineate myself from it. But our lived experience is challenged at every step within the medical system.
For instance, year after year, we see a lot of money being pumped into the medical system to look for cures for various disabling conditions and lived experiences. (Much more money than what is being used to build a more accessible world.)
Medical technologies are the reason we can detect cancers earlier or find ways to fight diseases like the coronavirus and so much more. But the truth is complicated.
Being engaged within the disability movement has exposed me to the social- and rights-based models of disability. These models locate the "problem" not within an individual's body, but within the system that is unable to reflect the diversities of bodies-minds that are present in the world. This is unlike the medical model of disability, which focuses on curing the individual or managing the disability within the individual.
Susan Wendell, disabled feminist and author of the book The Rejected Body, takes this further by reflecting on what it would mean for people with chronic illnesses that are disabling. She says, "Certainly it is difficult to say that one is glad to have been ill and be believed, despite the fact that many people who are or have been ill testify that it has changed them for the better. Of everything I said in my book about disability, The Rejected Body (1996), readers have most often questioned or been shocked by my statements that, although I would joyfully accept a cure if it were offered me, I do not need a cure and I do not regret having become ill. I suppose many people suspect I am making the best of a miserable fate, but then they probably think something very similar about other expressions of disability pride."
So for many chronically ill and disabled people, the social model that resists cure is harder to navigate. Even as we recognise chronic pain as disabling and listen to the many voices from members of this growing community, I think we need to complicate how we understand healing, disability pride and cure. But we need to reflect on how we see the medicalisation of our bodies vs the various ways in which we use medical technology (scans, x-rays, medicines to relieve pain, to reduce the deterioration of our bodies etc). I think helping a person navigate, manage and understand the way their body-mind interacts with the world has huge benefits, but forcing the individual to accept that their body is the defect " which is essentially how the medical model sees it " can be counter-productive.
Learning the difference between the two and trying to locate the agency of the person navigating this is essential. Eli Clare in his book Brilliant Imperfections writes: "Framing cure as a kind of restoration reveals the most obvious and essential tenets. First, cure requires damage, locating the harm entirely within individual human body-mind, operating as if each person were their own ecosystem. Second, it grounds itself in an original state of being, relying on a belief that what existed before is superior to what exists currently. And finally, it seeks to return what is damaged to that former state of being." If cure were not the go-to, what kind of world would we see?
There are no easy answers here. Especially since we have seen the huge role the medical industry has played in eugenics all over the world " which explains why we are all of course a bit suspicious of it. But as a heterogenous community, sometimes we have to ask ourselves some difficult questions about treating our illnesses and disabilities with medicines (of all kinds) without holding the individual responsible for it or succumbing to the language of a medical system which is often about "disorders". So this pain awareness month, I hope to continue on my own journey embracing the disability as well as the accompanying frustrations of living in a world that wasn't meant for bodies-minds like mine. To disability pride, of many kinds!
Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology. She works on programme development with Rising Flame and is the co-founder of The Curio-city Collective.