this is a blog space for writing about neurodiversity, mental health & art practice.
Do I / should I consider myself Mad and/or Disabled? (Project LETS ‘From Diagnosis to Disability + Mad Justice: Part 1’)
This essay draws from Project LETS panel ‘From Diagnosis to Disability + Mad Justice: Part 1’, you can access the recording & transcript by buying it from their Instagram @projectlets. The talk features panelists Stella Akua Mensah, Vesper Moore, Jess Stohlmann-Rainey & Chanika Svetvilas and is chaired by Stefanie Lyn Kaufman-Mthimkhulu.
I also draw from ‘Cripping the Keynote’, the opening panel from Cripping the Pain festival at Sophiensaele, Berlin with Carrie Sandahl, Kate Marsh and Noa Winter.
TW: discussion of psychiatric incarceration, mental health distress, violence, eating disorders, suicidality and self harm.
I recently was in a meeting with a commissioner of my performance work, where we discussed funding options. I said I hadn’t connected with Disability Arts organisations, because although I feel aligned with the experiences of Disabled artists, I don’t consider myself Disabled. Its not because of shame around using that term, its because I don’t think it would be right for me to take up space or funding in those contexts. So although I can learn from Disability Justice, I don’t know if I can call myself ‘Disabled’, especially in any context where I would take up limited resources that could be given to other artists.
The feedback I got was that I should consider this more - the organisation in question is undersubscribed with neurodivergent artists and they consider neurodivergence a valid disability.
Reflecting on how I feel -
I personally do feel disabled by my neurodivergence, and I include trauma and mental health in that. (I’ll say more about that later). I have written notes to myself in the past, describing myself as ‘relationally disabled’. By this I mean that social contexts, close relationships and work relationships are & historically have been made so difficult by the way I experience them & respond (getting flooded with extremely strong emotions during, or bombarded by intrusive looping thoughts afterwards) - that I feel that is a disability. Something other people take for granted - enjoying relaxing with friends, or simply being able to function within a ‘normal’ work hierarchy - for me are among the most difficult and painful things in my life. Unfortunately, due to my inability to relax and my looping thoughts, being alone can also be daunting for me. So I have spent much of my life on work/social burnout and masking my real (usually strong) feelings or exhaustion.
As I began to discover my CPTSD and the reasons for some of these experiences, it was primarily through the writing of Clementine Morrigan - a Canadian zine maker and writer who covers the intersections of mental health, polyamory & BDSM whose emotional world seems sometimes spookily similar to mine. They describe themselves as Disabled (I assume by their CPTSD), and I admire that choice. Their choice to use that label really opened my mind to what was applicable with the terminology of disability.
As I get older I realise there are other, subtle aspects which affect my capacity to participate - for instance fatigue (potentially muscle weakness associated with dyspraxia) and brain fog, combined with focus and attention issues, which mean I struggle to work 5 days a week or 8 hours a day in the same task, and sensory overload which means I need to take breaks away from background noise, strip lighting and screens. All of these affect my working life hugely, whilst remaining mostly invisible (until I am unable to continue). Sometimes the effects of these can actually make me look ‘Mad’, as they mostly bubble over into ‘inappropriately’ strong emotions or unusual behaviours like hiding during the working day & lying down in a quiet place with a jumper over my face.
Am I ‘Mad’?
Aside from the question of am I Disabled, I also have the question can I use the label Mad? I came across the reclaiming of this term through Clementine’s work but also through Project LETS, a political education & advocacy service by/for Mad, mentally ill, Disabled & neurodivergent folks. I saw a workshop where they used the acronym MMIND* to stand for all of these categories together. It made me think yes, that acronym means me - even though I can’t necessarily separate the parts of it in my own experience.
Personally, I feel relieved and happy when I think of self identifying with the term Mad or crazy. It feels like it reflects the unpredictable ups and downs, the shifting mind states, the way my mental health can suddenly grab hold of me and make everything really intense or horrible for long periods - the way it can dictate my life. But also the unruliness of my brain and feelings - which I identify with, and am kind of proud of. I would really like to exist in spaces where my ‘Mad’ness could be held and accepted - where my extremes of anxiety, paranoia, the days when I can’t get out of bed at all or motivate myself to even move, could be held alongside the moments of feeling great, the high productivity days/weeks, the ideas that sometimes flow so freely that they get out of control, the beautiful images and connections my brain makes, and my high sensitivity to everything around me. I don’t want to romanticise madness in relation to creativity (I absolutely do not think we have to foster conditions where we stay at our most crazy to access creativity - that is what this whole project is about). But for me, my Mad / crazy is intertwined with my creativity. And living in conditions which accept one, helps the other flourish (that’s why there has to be balance and I can’t do creative work full time).
But I am hesitant to use the term Mad - because I am not a psychiatric survivor. Clementine Morrigan is. I watched the talk ‘From Diagnosis to Disability + Mad Justice: Part 1’ by Project LETS and the panellists were all survivors of non-consensual incarceration, medication and in some cases torture by the psychiatric institution. My experience differs so greatly from this. As a young person, I made multiple attempts to get help. I didn’t know what for, but I knew I was seriously, deeply distressed and at some points suicidal. I was told by so many people that I just wanted attention, so much that I actually believed it myself. My GP’s response was to deal with my chronic bulimia & self harm by putting me on 80mg (the highest dose) of Prozac, so I lost a lot of emotional & decision making function for my later teenage years and spent a year almost completely in bed, afraid to even go out in my own garden. I was eventually connected to one counsellor on the NHS, who said they would only offer me family therapy. I refused, not surprisingly given my Dad’s history of violence and anger. I needed space to get well for myself, not to just comply. But I wasn’t ever offered that. My over-arching memory from age 15 - 19 is how much I *wanted* to go to hospital, I often felt terrified and so distraught on my own in my room at night, I just wanted someone to take me away and make me better. Now I know of course, that this would never have been the case. And I think its a very white, middle class fantasy.
The message of the Project LETS talk was that psychiatry is often just another form of incarceration, for negatively racialised people. That psychiatric experiences differ hugely based on race - and that people of colour are very unlikely to see them as potential help for their distress or to seek them out. Its more likely that psychiatry will be imposed on patients of colour. There was also a white survivor (Jess Stohlmann-Rainey) speaking of her horrible experiences in psychiatric ‘care’, so its clear once you’re in there, the system can be horribly negative for patients of all racial presentations.
‘For me, my introduction to the DSM and diagnosis was also my introduction to forced treatment. It was a really overwhelming and scary experience for me. Specifically, as a white woman, I had been taught to trust medical systems, and my family did also.’ (Jess Stohlmann-Rainey)
It seems ridiculous to me that I dreamed of ‘hospital’, now I know what the realities are. In recent years I have been so grateful I don’t have a psychiatric diagnosis - as it would have been a reason to refuse me gender affirming trans healthcare and at the very least, complicated my transition. I freaked out when I saw that my GP notes from 2002 said ‘suicide attempt’, and I wanted to get it erased, because I was afraid it would be used against me now. So I had a tiny taste of what it would feel like to feel paranoid and controlled by the information held about my mental health.
Diagnosis & privilege
I am diagnosed Dyspraxic but I am not diagnosed with ADHD, or Complex PTSD or any other psychiatric ‘disorder’. I wonder what diagnoses I would have received at different times in my life. I know there are times when I have experienced paranoia and delusions, would I have been treated as schizophrenic (like my Granny)? In my teenage years my emotions were so wild and my self destructive behaviours so common, would I have been a stereotypical Borderline (fragile white girl)? I also have autistic traits. If I was a cis guy, would I have been diagnosed autistic and gone through ‘special schooling’?
Anyway, I have the privilege of having one not-so-stigmatized diagnosis for Dyspraxia, so I can feel ‘valid’ at least as a neurodivergent person and access any services which require diagnosis, but without having to deal with limits on my life. A very lucky situation.
During my process of finding out about myself, I desperately wanted diagnoses. Mainly I wanted an autism assessment and access to ADHD treatment. Eventually I realised that the end point of these, was potentially something I could provide for myself (coping education and targeted therapy), and that they were so inaccessible (financially and due to 4 year waiting lists on the NHS), that for me it wasn’t worth it to pursue at that moment. There are also other consequences to diagnosis, for instance an autism diagnosis can affect your ability to get car insurance.
I realise that seeking diagnosis at all, is a white & middle class privilege. For anyone who is often categorised ‘dangerous’ by societal prejudice (for instance a racialised and/or working class person), these diagnoses can take on a whole new dimension. They are more a threat to life, than a rubber stamp to help you access services.
‘I think for Black people diagnosis has been a tool for punishment. It has been a tool for incarceration and for criminalization…It gets tricky in terms of the question of the privilege of a diagnosis.
Because I do think for Black people trans- and queer Black and Indigenous people especially diagnosis goes from a privilege, if it ever was one on an individual scale, to a dangerous one if it was a privilege to begin with.’ (Stella Akua Mensah)
Is Mad / neurodivergent, Disabled?
In the Project LETS talk I related so strongly to what Stella Akuah Mensah described about OCD:
‘I feel like I've reclaimed that kinship of the acronym OCD. I'm very opposed to thinking of my experience of being "disordered," though.
I think that applies a certain type of maladaptive, or pathological elements…when it was actually a logical response to trauma I had. I take a lot of pride in my relationship with "OCD." Whatever it is, whether it's a state or a condition (I don't think of it as an illness), it's quite foundational to how I process things and how my brain works.
I don't feel good about talking about that as a disorder. It's me. It's how my brain works. It's neurodiversity. And I really like that framing for myself.’ (Stella Akua Mensah)
For me, I have read enough to know that similar effects to those I experience can actually be caused by early trauma (executive dysfunction can be caused by two hemispheres of the brain not joining properly). So, who is to say whether I would have experienced the same neurodivergence without early trauma.
To be fair, there are some signs that it runs in my family - even that unsupported neurodivergence could be a *cause* of my Dad’s angry outbursts and inappropriate coping mechanisms. So here it loops round again. Which came first - neurodivergence or [trauma and] emotional distress? And would I even experience such great emotional distress and looping thoughts and self destructive feelings if I wasn’t hyper sensitive (neurodivergent) in the first place? The loop continues.
Therefore, to me my Mad ness is also neurodivergence, its part of my neurotype. But it would be wrong to erase the Mad aspect of my experience and call it only neurodivergence, as it feels so fundamental.
Do these things combined, add up to a disability? The Project LETS talk notes that many Mad people either don’t identify as Disabled, or struggle with that question.
‘The work we do at Project LETS is building between worlds of activism, disability justice work, Mad Pride, Mad Justice, etc.
There are connections but also a lot of distinctions. There are many evolutions of how we come to know ourselves -- the language and the tools we use, what we feel we have access too, etc. A lot of people who have been labeled as neurodivergent or mentally ill don't feel like they have access to the community.’ (Stefanie Lyn Kaufman-Mthimkhulu)
I can’t write a conclusion to this now, but I think I will continue to try & find resources to explore this question, and listen to Mad & Disabled artists to find out their perspective. I would say I already want to research the history of reclaiming the term Mad or crazy more, as that feels like something it would be useful for me to be able to express about my history and my experience. So maybe Part 2 of this talk, which touches more on Mad history, can help me with that.
01.09.21
I’m watching Cripping the Keynote for Cripping the Pain festival, and the panellists are talking about Mad non-Disabled people, or people questioning whether they fit within the Disability community, also being welcome in safe(r) disabled spaces during the festival (Noa Winter) - about how these spaces might be the place where you are able to begin to figure out how you identify. Carrie Sandahl is speaking about coalition building - about Disability community, not necessarily being for people only who identify as Disabled but for people who align with the experiences. This resonates with me and makes me feel welcome/relieved - and makes me think other people might have these questions too :)
Lying down, resting: ‘A Crash Course in Cloudspotting’ by Raquel Meseguer Zafe
I listened to the audio performance of A Crash Course in Cloudspotting by Raquel Meseguer Zafe, it was on at Sophiensaele and they sent a link to join remotely. It was really nice, as an experience. I did it lying on the sofa with someone I’ve been dating maybe 6 weeks. (Sorry because I know its meant to be headphones) but we listened together. It was kind of a new experience, to share something like this with a date. I always go alone to shows and love zoning into things, especially one on one things like that. But it felt nice, to lie there with another person, with their legs across me. I wore something over my eyes so I felt separate, and grounded at the same time - in my own head but in contact with their legs.
The show shares the stories of different people who need to lie down in public places often, either to rest, or deal with pain, or both. We heard the different voices telling us the details - lying in the front row of a cinema, but only after the film starts, or folding your body between the metal architecture of a train station bench. My mind was there with them, easily seeing the textures imagining the feeling of lying in these spaces. I loved the way the sounds outside the window blended with the sounds of the performance - mixing my world with theirs.
I felt really connected to this piece, really relieved, and really sad. I felt relieved because Raquel and other people with disabilities or chronic conditions are starting to be heard, and have more space to talk - at least in the UK. I felt relief because I related to these experiences and I had never heard anyone else speak about something like that. But I felt sad because of the hostility shown towards people who use public space in a different way, and the stupid unnecessary-ness of this.
After the performance I shared with my date the times I remember lying down in ‘unsuitable’ spaces. Getting migraines at work and feeling like I couldn’t go home because there was ‘too much to do’ - the time I was discovered lying underneath the Accounts person’s desk with my head wrapped in a scarf because she was part time and it was the only place I could be horizontal. The times when I used to go to the empty Studio downstairs when I worked in a theatre, because it was dark and I could hide there for a while until I recovered. Fatigue - The times I’ve laid down in the treatment space to sleep on my 25min lunch break at a beauty salon, counting the minutes until my break would end. And sometimes this strange reaction I get, where the room spins and I feel sick and have to lie on the floor in stressful situations. One time when I had to leave a performance at the Southbank and just lie on the floor right outside the theatre door, dreading the audience leaving and seeing me there, and the look the usher gave me. Knowing as well that its a privilege to be read as someone who is allowed to continue lying there and not moved on, or fired from my job.
The piece moved from stories grounded in familiar places - the toilet floor, the University lecture theatre, the cinema - to the slightly more fantastical spaces of a coastline in the jagged paintwork of Raquel’s ceiling, a Mediterranean beach, and the international space station. I loved how it flowed along, stream of consciousness, and took me to this place which felt so much like my own thoughts floating away in those stolen moments, sleeping with my head against a train window or drifting in a park. The audio talked about weightlessness & I felt myself hovering, floating, and then coming back to gravity and feeling the sofa underneath me and my weight sinking right down into the ground.
The stories shared made me a lot more aware that some people might see leaving the house as risky, that a change in state could happen at any time and how daunting that must be, to choose to be ‘out’ when you know you could end up unavoidably having to be on the ground - or like one of the stories, caught in the rain and curled up under a bush. It made me think a lot about how inhospitable the world is designed to be, and how everything flows smoothly until you need to stop for longer than a coffee. It made me think of the ‘anti-homeless’ architecture in London. And it made me think of the beauty in those moments, of the things you see and the thoughts you have in that half-waking sleep, when you can manage to snatch it.
I don’t know why I have fatigue (its pretty mild mostly), or whether my migraines are linked to my neurodiversity, or to be honest wtf even happened medically in some of those moments when I needed to lie down at inconvenient times. But it was comforting to hear that other people have experienced something like this too, and mostly to hear the details of their experiences - the suspect pool of water on the toilet floor, the arms of the bench or the plane seats - because maybe without realising it I felt ashamed, like I was the only one who navigated those & laid there anyway.
The sound was beautiful and after we drifted out of it, we talked and it was so nice to have been there - but also not - with someone else. I guess that’s what it would be like, lying there on the floor with other audience members. To be honest I really appreciated a performance that thought about my comfort! :) and where that wasn’t something I was sneaking by slouching down in the chair or resting my head back or making a cushion out of my backpack. hopefully there can be more.