Lost in Translation
by Mike Higgins
reprinted from Coalition Magazine
--- A Briton objects to America's takeover of the language of disability --
"Personal assistance" and "independent living" feel middle class and alienating.
The establishment in the 1970s of the first Center for Independent Living, in Berkeley, California, was an important landmark for our movement internationally. We have however since then transplanted the term Centre for Independent Living and other associated terms like personal assistant from the U.S. into the U.K. Disabled PeopleŐs Movement.
There is a danger that Independent Living could develop into a profession just as exclusive and excluding as other professions such as social work. Oppression, as the Black People's Movement has discovered, can be all the more effective if practiced by Uncle Tom rather than the person standing — yes, I mean standing — behind her or him.
There is nothing wrong with wanting to achieve personal liberation, but for this to be in any way meaningful, it needs to go beyond our own front door — if we are lucky enough to have one.
Terms such as integrated and, more recently, inclusive, have begun to appear in the titles of CILs, as alternatives to independent.
It is certainly worth remark in passing that anyone can change their language without having to disturb their practice very much. I note that Disability Doncaster has renamed itself Doncaster Centre for Inclusive Living. So far as I am aware, the same old wine is still in the new bottle. If it quacks like a duck, and flies like a duck, the fact that it might call itself a swan will probably fool very few of us.
My central theme here is the adoption of fresh, chosen terminology to describe and define new concepts such as the acquisition by Disabled People of a freedom and empowerment, which is supposedly implied by terms such as independence. My concern is the relevance to most disabled people of the language we employ — especially those who are marginalized by and from Disabled Peoples' organizations, or who have very little contact with the Disabled People's Movement.
In an email discussion by the Direct Action Network (DAN), a contributor asked, "What is the best term to describe the assistance my son needs to live his life?" She felt discomfort with terms such as personal assistant especially when needing a term (other than parent) to define the role in which she provides him with support in public settings. My view was, and is, that PA implies a secretarial relationship. It's the term most commonly adopted by, say, senior managers to describe the person who watches their back, takes their calls, administers their office, keeps at bay those who might intrude on their very busy and important lives.
This image isn't one with which, I would argue, most disabled people can identify. Most of us are not senior managers. Most of us are in fact in poverty and not doing paid work at all.
Likewise the term independent living for me conjures up an impression of someone who feels little or no need for mutual support. The notion of independence I have is one of separation from others rather than one of a collective or mutual reliance. The term independence, when applied to countries, clearly implies separation from other countries which may have oppressed a nation or ethnic group within a nation. It is poles apart from interdependence and even further away from the notion and philosophy of inclusion.
The value of difference
Segregation is taking people out of society and locking them up, either literally or metaphorically. Integration is saying, "Okay then, you can be part of our society, but on our terms." Integration labors under the mistaken belief that treating everyone the same is equivalent to treating people equally. Integration takes no account whatsoever of the differences between people. Integration doesn't value people for those differences, rather it says, "Despite who you are we will let you in. But you will just have to sink or swim. We're not changing anything about the way we do things — even if the way we do things is exclusive, negative and damaging."
I am no means precious about the following terms. I have no fixed idea about what the preferred language should be, but I do have some thoughts. Inclusion seems to me to be about valuing people, celebrating difference and diversity and respecting one another. For personal assistant, I prefer the term support worker as I feel this best defines the type of assistance I employ at home and at work.
Personal assistance and independent living feel middle-class and alienating. They imply to me a lifestyle and mindset which is outside of and alien to the experience of most disabled people. If we are genuinely to spread our movement and the ideas which underpin it into mass popular acceptance and, via this means, to achieve the liberation and empowerment of disabled people, we should use language which attracts and includes rather than excludes.
An irreversible, radical shift
Fundamentally, how do we with independence and personal assistance find an echo amongst the mass of disabled people? How do we ensure that the notions about which we campaign and proselytize — inclusion, support, choice, and empowerment — do not remain the preserve of a handful of privileged, informed, articulate, white, middle-class disabled people?
To build and sustain a mass movement of Disabled People and our allies, one that will really bring about a fundamental, irreversible and radical shift in the lives of all Disabled People and our families, we need to ensure that the entire, diverse, and vibrant activity of the Disabled community is focused upon battling for our full and equal inclusion. Nothing else will do. No piecemeal, halfway house compromises with organizations for us rather than by us can set about achieving our liberation with determination, vigilance, urgency and zeal.
Living in an inclusive society isnŐt about wanting my own slice of their bland, boring and tasteless cake so I can say I'm independent. ItŐs about baking a whole new, rich, and multi-flavored cake where Disabled people are vital ingredients.