Shunning, Shaming, Renaming is a moving piece by Rachel Cohen-Rottenburg about the power of reclaiming your identity while navigating disability and ostracism. I recommend you read it now.
There seems to be a desire on the part of abled people to try to balance the unpleasantness of disability with a belief that it somehow confers gifts equal or exceeding the burden of illness. There seems to be a tendency to conflate a person’s mental illness and their gifts, whatever those are, as though the former caused the latter, as though they were inseparable.
There’s also a tendency to say that adversity brings enlightenment – often true – and that therefore adversity is, in itself, a positive thing, even when that takes the form of being severely disabled. Even when that takes the form of being suicidal. People want to believe that misfortune bears gifts. Worse still is when these sentiments are expressed with envy.
I have a big problem with that.
The fact that I can bring beauty and goodness out of badness is something beautiful and good about me, not beautiful and good about badness. It is a skill I developed out of necessity – if I had not, I would get nothing out of it. If you must fight bears, it’s good to learn to use their hides and bones as armor and weapons. Better still is not having to fight bears.
Now this excellent quote from Rachel’s article, which articulates something for me that I have long fought to explain. Now this quote, which allows me to see the part of the problem that had been hidden in shadow: this assumption that disability comes with valuable prizes at the bottom of the box removes my agency:
When the anger rose, I was determined to turn the language of deficit and disorder and brokenness into the language of blessing. If the “experts” said that people like me were hyperfocused on our obsessions, I said that I was passionate about the things I loved. If they said that we had splinter skills, I said that I had talents. If they said that we had deficits, I spoke of brilliant adaptations.
I reclaimed, and renamed, and rejustified my existence.
And suddenly, I realized that it was all wrong. Because ultimately, this reclamation project wrote me out of its script altogether. I was no longer talking about myself. I was talking about the gifts of Asperger’s.
My analytical mind, my focus, my visual acuity, my way with words, my musical talent, my passion for justice, my honesty, my sensitivity, my gentleness: these had always been my gifts. Not the gifts of Asperger’s. My gifts. But they were no longer mine. All those precious moments of pride and work and love and family that had made up the fabric of my life had been stolen from me and made the fabric of a construct I had never named.
The gifts of Asperger’s. The gifts of an abstraction, of a word that a stranger had created.
My creativity, my sensitivity, my ability to empathize, to articulate complex ideas, my gift with words, these gifts are powerful. They are without a doubt mingled with my disabilities. But aren’t these my gifts?
They did not come from my illness. The process of dealing with my illness has taught me powerful lessons which have helped me help other people. But my illness itself did not do that – I did that. I’m the one who fought. I’m the one who carved a path. My illness did not carve it for me, I did not simply walk effortlessly into understanding. I had to fight my illness to get it. And I have to fight my illness to use that understanding to help others. I have to fight my illness to use the gifts some people say it gives me. How can these be gifts bestowed by my illness? My illness is not a gift.
Some people may feel differently about their disabilities and challenges. If so, I am glad for them. I think that’s really cool. People are amazing. Our relationships with ourselves, how we see ourselves, is so variable. Two people with the same condition can feel completely different about it. There’s a quiet understanding among disabled people that each person gets to define their own experience, they get to define how they relate to their illness. My experience of bipolar is not going to be the same as another person’s. I relate to my anxiety in a unique way.
For me, my disability is not a positive thing. It is a dangerous thing that I must fight over and over, lest it consume me. There are positive aspects to it – the hypomania can be quite wonderful – but those aspects are rare, and do not redeem the negative.
I do not want people taking me out of the equation. Just as I do not want people assuming that my illness prevents me from being gifted, I do not want people assuming that without my illness I would not have any gifts. Both assumptions do me no service.
My illness has played and will continue to play a role in the development of my gifts, my skills. Because it is a prime shaper of my day to day life, it shapes my abilities quite profoundly. It is not, however, all that goes into the making of me.
To say that taking away my illness would make me other than who I am is, in the strictest sense, true. But to say that taking it away would lessen me, that I do not agree with.
I am lessened by the inability to work due to anxiety or depression. I am lessened by my inability to spend more time with the people I love because I cannot tolerate leaving the house very often. Seriously. those things diminish my life, and I do what I do in spite of them. To imply that the illness that causes those things is somehow a gift because I am also creative and insightful is cruel: there’s plenty of people who can do what I do who aren’t crazy. I somehow doubt they feel that they are missing anything.
Respecting my illness and what it does to me is necessary. Respecting me and my gifts, apart from my illness, is necessary, too. Mental illness is part of who I am, but it is not what makes me extraordinary.
I spend a lot of time trying to navigate that line between acknowledging my limits and letting my illness define me. Muddying things by conflating my gifts with my illness doesn’t help clarify anything.