Reconciling "Mental Illness" with Mad Pride?
Emily S. Cutler
A few weeks ago I was told I needed surgery.
The surgery was for a physical health concern - a legitimate medical problem that showed up as a discrete entity on scans and diagnostic tests. It caused me severe pain that prevented me from working, sleeping, or socializing for short periods of time every couple weeks.
And although I am absolutely terrified of surgery, and really all things medical - although even the word "surgery" makes me nauseous and shaky - the idea of not getting the surgery didn't really feel like an option. I was told the procedure was necessary, and I didn't feel capable of or qualified to question that statement.
Although I have rejected mental health treatment said to be necessary for me for the past three years, this felt different. Unlike "mental illness," this health concern was a discrete entity that could easily be removed from my body.
As the surgery approached, I entered an almost psychotic-like state. The only way I can think to describe it was that my body was in a constant state of fight or flight 24/7. My hands shook, my head swam, my muscles clenched, and I cried nonstop for hours in anticipation.
"Maybe I shouldn't have the surgery," I said to a family member. "Not having the surgery wouldn't result in any real danger - it's not like it could lead to cancer or some other complication. It just means I'll continue being in pain sometimes."
"Not have the surgery?" she asked. "And live the way you're living now? In pain, unable to work, or sleep? Not living life to the fullest? Who wants to live like that? When the cure is so simple, so easy? Of course you should get the surgery."
At that moment, I felt that I couldn't argue with that. After all, it didn't really feel fair for me to ask for time off work, pain medication, or even empathy from others if I didn't do everything I could to address my health problem.
I got the surgery. Luckily, it wasn't anywhere near as terrible as I thought it would be, and in fact I would say the surgery itself went rather well. The nurses and doctors respected my wishes about which drugs I wanted to be given and worked to ensure I'd experience the minimum possible amount of pain. (As always, I recognize that it takes a tremendous amount of privilege to be treated this way - my white privilege and thin privilege make it more likely that my wishes are taken seriously in medical settings.)
But looking back, I realize now that the anticipation in advance of the surgery, and all the intense distress and full-fledged panic I went through, was not worth it. My line of reasoning - that it would not be fair for me to receive the necessary accommodations to continue living as I was - was highly flawed. The reality is that it is a valid choice to reject medical treatment, even in the case of a discrete physical entity or "illness," not because one particularly wants to be "ill" but because one decides that the physical pain caused by an "illness" is still outweighed by the psychological pain (or physical pain) caused by a particular medical treatment. An individual deserves to be accommodated for any difference or illness they have, regardless of whether they choose to seek treatment or not, and their treatment decisions need to be respected.
It was an important lesson to learn. From here on out, I will hopefully feel more comfortable rejecting any kind of medical treatment.
I've begun to think about how this idea might inform my activism. For a long time, I've resisted the notion of "mental illness," arguing that the states, traits, and characteristics we categorize as "mental illness" do not necessarily need to be cured or treated, but instead accommodated, accepted, and even sometimes embraced. This, to me, is what Mad Pride means. In this sense, it closely aligns with the social model of disability, which posits that disability arises from lack of inclusion and accommodation, not an internal medical condition.
Mad Pride does not mean that the states, traits, and characteristics categorized as "mental illness" do not cause suffering. Rather, it means that this suffering is not indicative of something wrong with a person, or rather, some flaw in their way of thinking/feeling that needs to be fixed or "straightened out" through drugs or therapy.
But if my own experience has given me the framework to hold that even "physical illnesses" do not necessarily need to be treated or cured, then what does it mean about the notion of "mental illness"? Is it possible that the notion of "mental illness" can co-exist with the ideas and framework of Mad Pride? Is it possible to say, "Yes, I am mentally ill, and no, I don't want treated, and yes, I want to be accommodated and accepted"?
I began to wonder how this might apply to my own experience and self-understanding.
About a year ago, I experienced a Large Group Awareness Training - a highly coercive, cult-like group designed to promote the ideology that everyone is responsible for everything that happens to them (including health issues and disabilities). You can read more about my experience here. My ex-fiancé, the one person in my life whom I had grown to fully trust and who I felt fully understood me, became an active member of the group and began to blame me for any health issue or disability I was experiencing. The training also allowed me to see the worst aspects of the critical psychiatry movement (i.e. a Szaszian focus on personal responsibility) - a movement I had just begun working for - in a highly visceral way, and intense disillusionment ensued.
Ideology and specific details aside, the experience traumatized me. My life has not been the same since. Over the past year, I have become an incredibly fragile person, and my fear of abandonment has been at a consistent all-time high - the knowledge that nothing is stable, no relationship is permanent, and everything could change overnight constantly hangs over my head like a thick cloud of smoke, pervading every aspect of my life. The ground beneath me is shaky; nothing is reliable, nothing can be trusted to exist. My own judgment of others can no longer be trusted as accurate.
This has led to a great deal of suffering and emotional pain over the past year. On some days, I sob for hours until I am nauseous. On other days, I hate myself so much that I imagine severing my body limb by limb.
It has also led to increased empathy and understanding of just how deeply messed up and unjust the world is. Being so deeply impacted by Large Group Awareness Training ideology has allowed me to connect with others who have experienced victim-blaming and work to validate their pain.
It is very difficult to know exactly how to conceptualize the struggle I've been experiencing for over a year. In many ways, the social model of disability fits perfectly well - my near constant level of emotional pain absolutely needs to be accommodated and accepted by those around me, and I would certainly be in much less emotional pain if there were increased acceptance and accommodation by society.
But at the same time, I feel that my struggle is not 100% societally constructed. While many wheelchair users would not find the inability to walk at all problematic if the whole world was wheelchair accessible and every individual were accepting of wheelchair users, I would still experience some degree of suffering and pain even if those around me were accepting and accommodating. The traumatic impact of my Large Group Awareness Training would still be, well, traumatic. In other words, my day-to-day struggle isn't just with ableism and sanism (although that is a big part of it). It is also with my internal experience of pain and fragility.
In this sense, I wonder if the "chronic illness" paradigm fits my experiences to some degree. And if this is the case, then does it make sense to understand my experiences through the lens of "mental illness"? If understanding one's experiences through the lens of "physical illness" does not preclude them from rejecting any form of treatment, can't we say the same about "mental illness"?
I recognize that there are a lot of valid reasons not to identify with "mental illness" or view one's experience through that lens. Those words have a lot of harmful and oppressive connotations in our culture; in most states, those words can be used to legally and medically justify depriving people of their liberty and bodily autonomy. Culturally, those words are used for people to evade responsibility for any kind of distress they may have caused a person - "You're not upset because I bullied you, you're upset because you're mentally ill!" I probably will not be publicly identifying as "mentally ill" any time soon.
But I think there are important insights and perspectives we can learn from the paradigm of "mental illness." I don't think this paradigm is irreconcilable with Mad Pride and I certainly don't think it's irreconcilable with the social model of disability. Most importantly, I believe cognitive liberty activism can and should encompass the rights of people with any kind of illness to reject medical treatment, be proud of or accepting of their illness, and receive accommodations. "Illness" - whether mental or physical - should never result in being deprived of liberty or autonomy.
What are your thoughts? What are the pros and cons of the language of "mental illness"? I'd love to explore this further.