What’s in a name?

The other day I watched a documentary called “Hearing Voices” about schizophrenia and the stigma of that medical label. The documentary followed a group of people who preferred to describe themselves as “hearing voices.” They made the argument that everyone has voices in their heads, that what is called schizophrenia is simply an intensification of that, on the same continuum. And that these voices are much better coped with when they are accepted and seen as a part of a person, rather than something foreign and dangerous that besets them from outside, and that should be gotten rid of.

This and the conversation that followed got me thinking, again, about labels and disability. I can understand their argument very clearly, and why that is an empowering position. Especially, as someone pointed out, because schizophrenia is such a particularly stigmatising diagnosis – associated with violent crime, and insanity, and treated with drugs that have horrific sedative side effects. On the other hand the normalisation of the condition (“we all hear voices”) seemed to me to have the danger of erasing the very real difficulties that people living with mental illness can face.

People often identify, for example, with certain AD(H)D traits – being forgetful, disorganised, or late for example. Hence they flippantly say stuff like “Oh i’m so ADD.” And yeah, I can totally see that these behaviour traits lie on a continuum. Especially in a world of technological devices which seems hell-bent on disrupting sustained attention.

On the other hand, seeing ADD as “normal” erases the ways that my life is anything but “normal.” It erases the fierceness of my self loathing when I can’t get to do a task which other people see as simple. It erases the disorientatingness of living a life which always seems poised to disintegrate at the seams. It erases three years of burnout and depression as I try to finish my PhD. It erases the very real disability of ADD, helpfully encapsulated within the medical diagnosis which becomes a kind of symbol, or short-hand, which university administrators can understand at a glance.

And yet…that label, that symbol, in it’s potency is also dangerous. It can be overshadowing. It can signal things to a future employer that I don’t want. It can determine how teachers treat a child in a classroom, or how parents imagine their potential. It is a double-edged sword.

I am lucky to have come to this diagnosis at the age of 30, as a critical, empowered grown woman who could choose how to use it. It was never foisted upon me by a school or parent. I wasn’t signed on for a lifetime of stimulant medication use before I could decide whether that was what I wanted. I have been able to be strategic.

My take on ADHD as a disability is this: Disability is a co-creation of your environment and your body (or in this case, brain). Therefore, adapting to and supporting disability should not be seen as just the task of the person (body/brain) but also the environment. In the environment of a PhD programme with erratic supervision, ADHD is for me a real and substantial and distressing disability, and should be recognised as such. (PhD programmes emerge as a trigger for bad mental illness of many kinds and the broad causes for this should be examined much more deeply.) In a different kind of job with more structure and support, ADHD recedes into the background. Yes, it is still there. Is it a disability? No. I think that analysing disability and mental illness in this way is much more responsible. It doesn’t erase the real conditions people have. But it locates the bad effects of these conditions in a much broader way. In a society that stigmatises mental illness. In a building that isn’t adapted for a wheel chair. In an academic culture that prioritises speed and funding outputs over individual well-being.

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One comment

  1. Wonderful post S, meditation, provocation on the film and discussion that I have also experienced. Thank you, so many thoughts now follow.

    Firstly, I agree with your suspicion towards the politics of normalisation. On the one hand, constructing experiences as if on a spectrum from mild to extreme breaks down the dichotomy that is usually erected between the sane/normal/rational professional mental health workers and the insane/mentally ill/irrational people with lived experience (I’m referring here specifically to mental health sector) which justifies all sorts of human rights violations and social injustices towards the latter. Encouraging general public and mental health professionals to consider that “madness” may touch all of us at some point of our lives may work towards softening some of the othering that takes place, perhaps?

    On the other hand, it carries the risk of, like you said, erasure of the extremely distressing embodied singular experiences of people, as well as social disabilities resulting from them. Also, what kind of useless category is “normal”?

    Secondly, through my research and involvement in survivor movement and advocacy, I’ve come to view experiences known under psychiatric diagnoses as “mental illnesses” and experiences related to diagnoses of autism spectrum, ADD, ADHD, dyslexia as separate groups of clusters of experiences, based on divergent aetiologies. (I don’t claim any expertise and am happy to be challenged). Progressive movements that have emerged seem to have different politics around labelling in consequence. The category of “mental illness” is critiqued as scientifically invalid (as the film demonstrated – there is no evidence that it is a brain disease), demoralising, oppressive and increasing of the stigma and discrimination. I would not call myself ill or disordered even though I experience fluctuating states of emotional and mental distress.

    My understanding of experiences labelled as ADD, ADHD, Autism, dyslexia etc. is that they are evidenced to be attributed to the brain, and atypical or divergent ways of processing information. There seems to be less doubt about the biological cause of them (or?). I’ve read some wonderful blogs of people identified with the neurodiversity movement, who call themselves proudly autistic (I haven’t found much around ADD yet) and stand by their label as a marker of both their diversity and the communication of disability caused by environments not poised or educated to honour said diversity (which you wrote beautifully of at the end).

    Maybe there is no one way to approach and justify the label then?

    That said, I’m not sure if I’m creating an unnecessary further separation and I am aware that identity politics are a murky ground. I’ll continue to think with you on this issue.

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