Accessibility and Archives: “Consider the Astronaut”
In this, the sixth in a sequence of blogposts around disability and inclusion from the Accessibility working group of ARA’s Diversity and Inclusion Allies, Philip Milnes-Smith shares the perspectives of Audrey King, who contracted Polio as a child which left her unable to user her arms and legs. In 2008, she was contributor to the first (and, so far, the only) Canadian Disability History exhibit planned from an activist perspective. This blogpost is drawn, with her permission, from some of her unpublished presentations.
All too often, the perspectives of disabled people are missing from archives. Even if we have the records of a hospital, asylum, charity or school that existed because of disabled people, it is the voice of the non-disabled that gets handed on to posterity. For them it was obvious that the problems lay in the ‘lacks’ and ‘deficiencies’ of the disabled person, rather than limitations imposed by the environment and the attitudes of others.
Having qualified as a rehabilitation psychologist, Audrey was able to model for her patients the possibility that disabled people could earn a livelihood. An advocate for the Independent Living Movement in Canada, she helped found services for other disabled people in Ontario.
She offers us the metaphor of the disabled person as an astronaut, needing additional packages of support to survive and thrive in an environment not designed for their needs:
“The astronaut can't even sustain his body's need for oxygen. He actually requires "life support" systems for his very survival. Yet, who would label an astronaut 'disabled,' 'deficient,' or in need of intensive medical attention?”
“Yet, when you think about him in that environment, you realize he is in fact, severely disabled. He cannot walk properly unless he wears special boots to keep his feet on the ground in that weightless outer space environment. he can't feed himself unless he learns to coordinate his hand to mouth movements. He requires specially prepared food… The astronaut can't even sustain his body's need for oxygen...
Rather, It is the environment that is considered and perceived as "hostile, alien, incompatible with life, and definitely not accommodating to the astronaut's physiological requirements."
The medical model philosophy with its science-based reductionist insistence on categorizing, measuring, evaluating and researching, carries the authority - and also the necessary resources which overwhelmingly drive our support systems for those who are dependent on others in their daily lives.”
Time and again, however, those whom Charity and Medical Model thinking empowered to make decisions about disabled people have misjudged their capacity:
“Ed Roberts [1939-1995], a totally quadriplegic respirator-dependent man… [who became] Coordinator of Rehabilitation Services for the State of California and a founding member of Disabled People’s International. His oft-repeated phrase… is “vegetables of the world unite”. Why? Because when he became ill as a child his parents were told he would be better off dead because he would only ever be a vegetable!”
“[M]y parents were told not to worry about educating me because I would never amount to anything or be able to get a job. Surgeries to improve hand function were never suggested until I was the top student in Grade 12 and considered to be “worth it”. Even today - When people admire some of the gadgets I have developed or ways I have altered my clothes to improve independence, I am frequently asked "Who thought that up for you?" “
When considering how accessible our premises and events are, it is too easy to ignore the role played by the records themselves What will disabled users think and feel if the only records of people like them in our care, or those which we choose to share, suggest that they would be better off dead, or portray them not as fully human deserving of equal rights, but pitiable burdens on their families and unsustainable costs to the economy? Have we been assuming that any such gaps in our collections do not matter because, according to our prejudices, their lives have simply contributed too little? Might active collecting have a role in diversifying the perspectives of disability that reach posterity?
“Not everyone with a disability, of course, learns or accepts the negative way society sees us, and the degree of disability often has little to do with our self-image, although most people think otherwise. I have several friends for example who cannot do anything physically for themselves, except use a highly adapted computer and direct others in assisting them to accomplish their activities of daily living. Both have severe athetoid spastic cerebral palsy and speech impairments. One is totally dependent on an electronic speech box but she paints, is happily married via the Internet and loves her body and self so much she has painted herself nude. These are “healthy” people who have a good sense of “well-being” “
I don’t at all want to suggest that the only disabled lives worth sampling are inspirational “super-crips”. However, I do encourage readers to reflect on how fortunate they would feel were they to be offered the opportunity to appraise, catalogue and publicise the personal papers of an astronaut.
Audrey’s great little book There’s Lint in Your Bellybutton, described as a Disabled fable concludes with “a few of the idiosyncratic space age fantasies of persons with disabilities”. The final suggestion is “a totally accepting world where all of us regardless of our differences or how we get around, feel like we belong!!!” What might need to change in our archive sector for this aspiration to be realised?
Contributions to this series are welcomed, particularly if you are working with records of Disabled people or with Disabled people. If you are interested, in the first instance, please email diversityandinclusion@archives.org.uk .