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.

Scarcity versus Abundance

One cool thing I learned from disability activism (and my friend Jesse the K) is the idea of scarcity vs. abundance. This concept is yet another one that helps me make sense of my daily life.

For instance, when I go to get groceries I often bring my own bags. The store gives 5 cents credit for each bag and it’s better for the planet; the bags are easier to carry than store bags; they are neat ones that my mom makes; etc. The problem is, the cashiers seem to shift from an abundance mentality (limitless plastic bags) to a scarcity mentality (only 3 bags that I brought). And even though I say to them, use plastic for whatever doesn’t fit, they seem to take pride in saying, “Oh, I think I can make it all fit into your bags!” So then they load up my tote bags and make them super heavy and difficult to carry. I haven’t yet figured out a solution to this, except bringing a huge amount of bags with my every time (even though I’m not sure how much I will buy), or teaching/training the baggers little by little not to over load my bags. This store is not designed in a way that would let me bag the groceries myself. I’m sure I look able bodied to them, like someone who would have no trouble lifting really heavy bags.

In terms of disability, abundance does us much better than scarcity: let’s believe that there can be enough elevators, enough pain medication, enough time to get where we need to go (and to rest), enough access to medical care, enough support from our friends and loved ones. More than enough.

I believe in abundance.

Second Shift for the Sick

I love language. One of the benefits of reading blogs is that I’ve learned words and phrases that have opened up my world and helped me understand my own life. I’ve learned how language can be empowering or disempowering. One such empowering phrase: The second shift for the sick.

This phrase refers to all the work one does when one has a chronic illness. Self-care can be a full time job; this applies whether one works a traditional job or not.

Some examples of things that take up time and energy in this second shift:
Multiple trips to doctor’s appointments, including specialists and physical therapy, and any alternative therapies such as acupuncture.
Trips to the pharmacy.
Filling up pill keepers and setting pill alarms.
Phone calls to arrange appointments and transportation.
All the waiting in reception rooms, on hold, and in line.

Resting. This is its own category. You might be saying, what is so hard about resting? Isn’t that a good thing? Well, for me anyway, resting so much is inconvenient. Sometimes the need for sleep or the need to sit down hits me like a brick, I need to do it now, even if I’m in the middle of a work day or out running errands. The need for rest can lead to frequently cancelled social plans. Rest can also be boring, especially when one is laid low by pain, because concentration is difficult.

Each chronically ill person probably has their own example of other “second shift” work. If you are on a restricted diet, that diet most likely involves a massive amount of work to plan and prepare, for instance. Keeping a journal of symptoms, something which is recommended for people with migraines, IBS, and other chronic illnesses, is often daily work.  You might need to do specific physical therapy exercises, maintain a CPAP machine, or check your blood sugar.

All of this work takes time and energy, and for the chronically ill, energy is often in extremely limited supply.

Amandadaw at FWD described it this way:

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

All of this logistical work is uncompensated; indeed, it is expensive. While chronic illness may reduce one’s earning power due to pain, fatigue, and other impairments, the financial costs of being ill are sometimes hidden. In addition to co-pays for medical expenses, chronically ill people may have to pay for things such as:
-transportation to and from appointments
-over the counter medications
-assistive technology such as braces, canes, mouth guards, special shoes, etc
-ice packs
-Special foods such as gluten-free items

Some will say that it’s only fair that those who are using medical services more should be paying the increased cost in the form of co-pays, etc. But it seems to me that this is a disability tax, a fee for being ill.

Discovering the phrase “second shift for the sick” was empowering for me because it gave me a way to recognize all the little things I’m doing as work, work that other people don’t have to do, work that is costing me money and energy.  Learning about women’s work and emotional work were similar processes.  I have high expectations for myself, many of which are expectations I had for myself as an able-bodied person.  Adjusting my expectations as an ill person has been a difficult process, and something that has helped has been learning about the value of different kinds of work.