Me + Disability Studies = Love at First Sight

So, why am I interested in disability studies and activism?

For most of my adult life, I have had chronic ill health.  At first, I didn’t really understand what was happening to me, and kept assuming I would get better.  Eventually I realized that I wouldn’t get better, and I even stopped expecting a diagnosis.

As you can imagine, being a young ill person, with no satisfactory diagnosis, was very frustrating and upsetting.  I wrote a few years ago about what it was like to live without a diagnosis.  I did not expect my life to go this way and I did not know how to cope.  My illness affected my ability to work; and I still don’t really know how to talk about it. I find writing about it to be much easier.

In 2007 I went to my first WisCon, a feminist science fiction convention.  In the packed of registration materials, there was a handout on the convention’s disability access policies. Reading this handout was a revelation.  I realized that I was a disabled person, and that this space welcomed me as such.  Simple accommodations such as water service in every room, a designated quiet space, signage and maps identifying the bathrooms, and ways to manage stress, were designed as if they had me in mind.  Rules for etiquette were clear and logical.  Me plus disability studies equaled love at first sight!

Like other social justice movements, disability studies tells you that it’s OK to come as you are.  That you are welcome and valuable as yourself.  You don’t have to try harder, or struggle to be someone else.

I decided I just had to learn more about the Access Team at WisCon and get involved.  I befriended Jesse the K, who eventually handed over the reins to me, and now I am the Access Chair.

WisCon is known for being a leader in accessibility; we hope to keep it that way.  I want other people to be able to fall in love with disability studies the way I have; I want other folks to feel welcome in our space whether they are disabled or not; and I want other conventions, conferences, and events to adopt similar policies.

 

Masked vs. Blind

(The following is a re-post, with edits; orginally posted at access-fandom.dreamwidth.org)

I first started using “masked” instead of “blind” when I worked on a scientific study where some blind people were participants.  It was simply the policy of our research group, and I went along with it.   Blind is both a medical term and an identity category, and therefore it means a lot of things already; “masked” is more respectful and we used it in place of “double blind study” for example. This was before I got into disability politics, maybe around 2005.

Other scientists were doing this as well.  Searching for “masked study” on PubMed (a medical and scientfic journal database) reveals a few such articles as this one, from 1998, by Justice et al; “Does Masking Article Identity Improve Peer Review Quality?”. The Article is free at JAMA. 

So, this language has been in use for some time in journals, but has not widely taken over.

A few years later I met my friend Jesse the K, who convinced me to stop using “blind” as a metaphor entirely.

Here is some background reading:
Kestrell: What Good writers Still Get Wrong about Blind People
Kate Nepveu, panel writeup: I’m not your metaphor: Explaining Oppression with Analogies
Jesse the K: I’m not Colorblind, I’m Totally Blind!

Jesse says: “Blindness doesn’t endow one with greater spiritual insight nor better hearing than sighted people…”

This is key. The whole idea of a “blind” study is that it makes a scientist less biased. But it’s the built in ignorance of the drug or intervention being used that makes the scientist less biased. It’s a way to build safety into a study. It has nothing do with sight in particular: it has to do with knowledge, and sequestering knowledge. In the case of reviewing, it’s the ignorance of who the author is.  In the case of an audition or application, it is the ignorance of the identity of the performer or applicant.

The stereotype of blindness, of blind people, being perpetuated here is that they are purer, less biased, more forgiving of flaws, better judges of data and of character. They can’t be, you know, just people. Once again, disabled people aren’t given the benefit of being full human beings, of having full moral character.

“Masked” is preferable because it is a separate term that evokes temporarily putting on and taking off of a mask, for the purpose of doing a study or review, or of judging an application or audition. A mask could cover up one’s identity, make one seem like someone else, or no one at all: it gives the idea of being anonymous. For reviewing in particular, this metaphor works very well: what if the manuscript was submitted by Anonymous? A person in a mask. It’s not that the reviewer is “blind”–a stereotype of someone pure and unbiased, it’s that the submitter is wearing a mask.

Your thoughts here are welcome.