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The Independent Living Movement: Empowering People With Disabilities
and there were fifty of them:
"No otherwise qualified handicapped individual in the United States as defined in Section 7 shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance. "
Within the last decade words similar to these have been embodied in legislation in states, provinces, and countries around the world. They represent a shift of more than symbolic importance. They dramatise a change for all people with disabilities in our relationship to the larger society. They call for an end to our reliance on private goodwill and public charity. They call instead for a recognition of society's responsibilities and our own civil rights.
In its wake has come a movement with different names throughout the world: Disabled People's Movement; Handicapped Rights; (and for me, I like the name because of what it conveys) The Independent Living Movement.The Roots of the Independent Living Movement
Like all social movements it has its roots in several others and like many movements of the Post-World War II era, it focuses on a group who has felt disenfranchised, shut off, if not excluded from the mainstream of life.
From the Civil Rights Movement, the Independent Living Movement learned that rights without opportunity is meaningless; and so it also emphasised certain entitlements to education, income and medical assistance. It emphasised the need for affirmative action and recognised that oppression runs deep in society and thus coined the terms 'healthism' and 'handicappism' to rank with our other sins of age, sex and race.
The Consumer Movement has often been critical of the sovereignty of the professional. As you know, this sovereignty is especially true of the medical world. For instance, the United States Rehabilitation Act of 1973 no longer allows the professional counsellor to have the final work in case planning. Instead it provides for an individual written rehabilitation plan (IWRP) to be drawn up jointly by client and counsellor.
The Self Help or Mutual Aid Movement has long advocated that someone who has been 'there' is often the best source of support and help. This has been enshrined as one of the key services to Independent Living Centres, its peer counselling programs.
Those involved in the processes of 'self-care' have long criticised the increasing medical domination of many of life's problems. The Independent Living Movement both recognises the important storehouse of information that former patients have, and that much of chronic care can be better handled free of medical supervision. In fact, much of this medical presence, as in the supervision and training of personal care attendants, may be unnecessary, if not counterproductive.
And finally, there are the links to the Women's Movement. Like the Women's Self Help Movement, those in Independent Living could well have the same mother: 'Anatomy is not Destiny'. Women are struggling to reclaim their bodies from medicine. They question the growing medicalisation of their everyday lives. They criticise the necessity of labelling many of their conditions not only as medical, but then by definition something 'diseased' if not 'disabling' and thereby something to be controlled and gotten rid of (Boston Women's Health Book Collective 1985). The protest of those of us with disabilities is similar. So too are our realities. There is no denying that women menstruate and become menopausal, become pregnant and give birth. Similarly, we with disabilities do not deny that we have physical differences, be it a loss of vision, hearing, or mobility. But this does not mean we are thereby 'less thans'. The barriers to this realisation as well as to our full participation are rooted in myths, socially induced and socially maintained by some who wittingly or unwittingly have something to gain by keeping us in out places.
Thus whatever else our challenge is about, it is about power and its locus of control: who has the right to determine what about the quality of our lives.
In my remaining time I wish to analyse what some key quality-of-life issues look like from the Independent Living perspective.Independence -- Whose View?
The striving for independence is a hallmark of the rehabilitation literature (Crewe and Zola 1983). The key too often seems to be who is defining what is independence. Let me illustrate this with the physical condition I know most about: mobility. Most people with mobility problems have had to face the increased physical difficulty in doing things which once were easy. We have had to overcome much reluctance, fear, and even pain to use our muscles while our arms, legs, and even heads rebelled. And once we could reach certain physical goals -- take those steps, climb those stairs, scale that hill -- we were told explicitly that we must always do them in order to maintain out strength and independence.