No, I am sorry–you are now a burden to society
By Constance Laymon
Who "Interprets the Primacy of the Visual and Contemplates Reintegrating the Past."
How to begin . . . Bluntly in tune with societal stereotypes? On May 31 or June 1, 1984, I broke my neck losing sensation, mobility, functionality, sexuality – I was left confined to a wheelchair. I was half a woman now – after all, I could not walk – let alone writhe around, standing on the top of my head in bed, [I never was considered a “Marrying Girl” as an Italian friend points out – There are girls that you marry and those you do not . . .] After my injury a very mean acquaintance referred to me as a Dead Fuck. I cried because I believed the reference. My body was not mine – it was other – it was irrevocably broken.
I was broken, in the context of Medical Model, relegated to the categorization of life-long patient, Handicapped, needing to be taken care of. Productivity? No, I am sorry – you are now a burden to society, was the overwhelming message I received. You are now relegated to abject poverty with all the other SSI recipients poor enough to meet Medicaid's eligibility criteria. What a shame, a waste – a tragedy . . . I was pitied. I pitied myself. I hated myself, or the parts of me that were no longer me but abnormal and freakish. I would never be pretty again. How can a girl be pretty with gnarled hands, atrophied legs, a crooked back and scars? [Just how pretty was I before? Define pretty.] Mirrors were the ultimate enemy: Unfortunately, eyes acted as mirrors more telling than any glass refracted reflection. Why me? As if I had any control over any aspect of my injury . . .
Why not me? I was born May 31 or June 1, 1984, beginning a journey of self-discovery, self-definition and rage. It began with rage against the physical changes, those that facilitated the emotional and mental turmoil. Eventually the rage shifted, re-focusing on a society that was busy defining me with negative connotations without pausing to look at me – the me I was discovering for the first time in my life – the me that was Mind and Body – not just Body – not just sex. This Body had obvious limitations but these were irrelevant to overall Quality of Life and self-worth.
Disability equated to financial eligibility – access to education. I discovered education to be the most potent form of empowerment. I could love me because I began to critically question the culture's criterion for acceptance – they made no sense. I could not walk. So what. I could roll from place to place. Who set the standards to valorize the locomotion of walking? Could I still love and care for people, places, things? Yes. Could I interact in a substantial, meaningful way with larger culture? Yes. Could I reason and consider deep questions – questioning the questions as well as the answers? As never before. Was disability the problem or was it really a skewed perception of disability?
As my studies progressed, my perspective began to move away from the culturally accepted stereotypes to an egocentric definition of disability, that actually seemed to fit every person alive since humans are mortal and prone to illness, disease, trauma and most logically – the inevitable aging process. I found that every time I left my home I taught others to consider a critical approach toward disability issues. In the context of my written work, I had always focused on Creative Writing as an expression but I began to shift toward a Theoretical stance. I wanted to theorize disability through its social construction. I craved a reinstatement of autonomy, and began to investigate the larger Disability Rights movement, in particular, two major aspects: the Independent Living Philosophy and Consumer Directed Personal Assistance.
The Independent Living Movement
The Independent Living Movement is a grassroots, consumer driven philosophy born in California over a decade ago. In May 1996, I attended the World Institute on Disability’s [WID] Personal Assistance Conference and the annual National Council on Independent Living [NCIL] Conference in Washington, D.C. These activities were shocking given the broad range of people with disabilities who were actively proliferating positive change and solid Civil Rights for People with Disabilities not only in the United States, but for the World. As a person who obtained a disability, I began my first seventeen years of life in the dominant, privileged sector of our culture – as I met and conversed with individuals with congenital disabilities, I realized that there was an artificial hierarchy separating our groups – lending a valuation to those who obtained a disability rather than being born with one, though both groups were generally devalued by larger culture. Another startling issue was the regional attitudes toward people with disabilities within the United States. The Southern States in particular, severely devalued people with disabilities and in the context of autonomy, many states did not offer Personal Assistance as an option through their Medicaid programs, rather, limiting the only option open – Institutionalization within Nursing Homes. I never thought I would end up saying, Damn, I'm glad that I was injured in New York State.
I began my involvement with the Consumer Directed Personal Assistance Movement in February of 1996 when the Capital District Center for Independence hired me as the Consumer Directed Personal Assistance Program [CDPAP] Coordinator. CDPAP is a movement away from medicalization and paternalism in Personal Assistance [generally referred to as Home Care because persons with disabilities are considered homebound, as well as in need of care that is not self-facilitated, Case Managers, Nurses, Home Health Aides and Personal Care Aides take care of persons with disabilities, rather than assist consumers who Self-Direct their own lives.] This Medicaid program allows Medicaid Eligible participants to Recruit, Hire, Train, Supervise and Fire the Personal Assistants who work with them. Tasks are self-defined, time issues are self-defined and the responsibilities and choices are self-defined by the consumer. I was laid off from my position by the Center for Independence in June 1996 due to financial difficulties within the organization. I continued working in a volunteer capacity, eventually Incorporating a separate Not-for-Profit Organization to facilitate CDPAP within the Greater Capital Region. I currently serve as the Acting Executive Director of Consumer Directed Choices [on a volunteer basis as well until the Medicaid funding begins so the Board of Directors can hire an Executive Director.] In the context of autonomy, Personal Assistance is the DNA of independence for the majority of people with disabilities. I am driven to delve into the devaluation of Care with its burdensome connotation to theorize Personal Assistance as a natural, integral result of a disabling condition. Whether or not a task is performed by an individual is irrelevant. Why should it matter that someone needs to assist me with dressing every morning? Who cares as long as I am dressed?
I obviously have a holistic project semi-mapped out that I intend to pursue for the rest of my life.
Constance Laymon can be reached at firstname.lastname@example.org
Visit Constance's web site: The Tyranny of Materiality
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