Siebers’ article mentioned Cheryl Marie Wade, a disabled performance artist whose Disability Culture Rap I had earlier found on YouTube (part 1, part 2). The video intercuts archival footage and (some very graphic) images with contemporary disabled performers, the song message is clear – that society’s attitude is the historical reason for disability, and activism is the only way for the disabled to subvert societal ignorance and empower themselves. A still from the video clip:
The video is at once celebratory and activist in nature; the subjects are not portrayed as objects of pity or contempt, but are encouraged to engage with their disabilities and perform. A refrain that is repeated in the video: “[disability culture] is about naming and claiming who we are“, while another verse claims “It’s more about poverty and oppression than wilted muscles and milky eyes.”
Wade says that she uses rap as a vehicle for activism since “...it grabs people in a way that speeches don’t. Poetry, music, reaches into people and holds them in a way that talking to you doesn’t.”
“I want my art to be so good that someone who doesn’t give a damn about disability comes to see me because I’m good, and goes away with a new consciousness about disabled people.”
This is surely what all artists and performers want – for people to attend the show because it’s good, not for any reasons of politics or solidarity. This is probably more so for artists with disabilities – trying to break free from the ‘disabled artist’ label. Her poem Not a Reason to Die deals with the concept of eugenics, and is darkly vivid, with marvellous rhythm and structure:
I’m trickster coyote in a gnarly-bone suit
I’m a fate worse than death in shit-kickin’ boots
I’m the nightmare booga you flirt with in dreams
‘Cause I emphatically demonstrate: It ain’t what it seems
I’m a whisper, I’m a heartbeat, I’m “that accident,” and goodbye
One thing I am not is a reason to die.
Wade is an activist who pulls no punches when it comes to telling it like it is – cynically and angrily. She developed rheumatoid arthritis in childhood, and speaks openly of the agonies she suffered as a result of treatment procedures and medical intervention. She was at Stanford Children’s hospital, which is regarded as one of the best in the world, but since it is close to Stanford University she says she was treated like a guinea pig:
“I was put on some medications that were very strong, a thing called chloroquine that turned my hair white and bleached out the pigment of my skin so that I got sunburned very badly and things like that. It changed some of the structure of my retinas, which is why I’m going blind now.”
She expresses bitterness towards the medical system she sees as having let her down: “Doctor is God on earth. And if doctors say this will help your child who is in pain, you do it.” She harbours no ill feeling towards her parents for having subjected her to treatment.
“It’s fix it or bury it, and I wasn’t going to die, so the thing was, “We have to fix it.” And then when I couldn’t be fixed, I was a failure. I was dropped like a hot potato from the medical system.”
In an extended interview, she also talks of sexual abuse she suffered at the hands of her father, and of her mother’s denial and eccentric way of dealing with her daughter’s disability: “And she says to me, “You know, it’s probably a good thing that you became disabled, because I just would have been so worried, because you were so beautiful.” I looked at her, and I said, “Mom, when did I die?” That was the end of the conversation. I said, “When did I die?” You know it was like, “Ok. I was, huh? I guess I cease to exist at some point.””
A lot of her work is graphic and deals with issues surrounding pain and humiliation, the language is strong, the stance is aggressive, in your face:
It Ain’t Exactly Sexy. . .
To put it bluntly — because this need is as blunt as it gets — we must have our asses cleaned after we shit and pee. Or we have others’ fingers inserted in our rectums to assist shitting. Or we have tubes of plastic inserted inside us to assist peeing or we have re-routed anuses and pissers so we do it all into bags attached to our bodies. . . .
If we are ever to be really at home in the world and in ourselves, then we must say these things out loud. And we must say them with real language. So they are understood as the everyday necessity and struggle they are.
. . . If our shame tells us that our needs lack dignity, that we lack dignity, then the next thing we hear our shame say is that it is more dignified to die than to live with these basic needs that take away our privacy and seem like such a burden.
Her work is cathartic, and I think that she speaks for many of those who are unable to speak for themselves, or who choose not to do it with such frankness. In a poetry reading session, Wade speaks of her personal struggles and anger, covering a whole gamut of emotional experiences and responses to disability. One of the key ideas she has is ‘naming it’; she uses words like cripple and deformity almost like swear words. The point she is trying to make through most of her work is that by naming or labelling something, we have somehow dismissed it, and I think this goes back to the concept of the social construction of disability and the Foucauldian premise that something must be represented before it can exist. If those semantic structures are challenged, can the socially-constructed disabled body be reclaimed as valid as opposed to invalid?
“I’ll be damned if I’ll let anyone judge this life as not quality. Thousands of non-disabled people would be very fortunate to have my life.”
On art, she muses: “art is to rev up the masses, to rev up the troops, to inspire the troops“, and then she builds on her idea: “The other part of what art can do in terms of the movement, is that it can take the movement places that the movement can’t get to, like on the stage, where your middle-class people who don’t want to know about disability, who don’t care about it, don’t want to hear political speeches, will come into a theatre and be taken into another world. If that world is created with power, beauty, poignancy, humanity, they cannot deny it. I think really good theatre can do that. Hopefully, really good film can do that. Really good music–any of it that comes from disability experience can help bring the movement and the world of disability, which the movement is certainly a part of, into places where it doesn’t normally get to go.” So the arts provide Wade not only with a performative means of expression, but a platform on which to share her ideas and experiences; one where she is guaranteed an audience, rather than just soap boxing or blogging.
I have since found that Wade died in 2013. In an obituary on New Mobility website:
Cheryl Marie Wade — “The Queen Mother of Gnarly” — an acclaimed playwright, poet, performer, filmmaker and disability rights activist, died at her Berkeley, Calif., home on August 21, 2013, due to complications of rheumatoid arthritis. She was 65.