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 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.

        I am currently a second year doctoral student in the English Department here at the University at Albany.

        Ever since I was a child I have always considered myself a deep thinker.  Three weeks before my High School graduation, I fell off a cliff, injuring my brain, breaking my neck, arm and sustaining multiple internal injuries.  I was seventeen.  After a period of adjustment I moved from Cooperstown, NY to the Capital Region.  As a quadriplegic, I have, by default, been trust into systems – Social Security, Social Services, Vocational Rehabilitation etc.  Since this injury, I became quite adept at evaluating a given system, learning its tenets and then maximizing what I personally need from it.

        When I began my college career in 1988 at Schenectady County Community College, I was uncertain of my niche and pursued a degree in Humanities and Social Sciences.  One fact was glaringly clear – education was the strongest form of empowerment and esteem that I had ever experienced.  I transferred to the University at Albany and majored in English with a minor in Philosophy – I was extremely attracted to the critical thinking aspect of these disciplines.  I finished my BA in 1993 and applied to Albany Law School.  I subsequently discovered that I was born with a hole in my heart and underwent Open Heart Surgery in 1994.  After this experience, I contemplated my future and had serious reservations about entering into the field of Law – I knew I was an academic and an intellectual.  I immediately took my GREs and applied for the graduate program in English.  The department accepted me as a Masters student for the Fall of 1995.

        In early 1996, while working on my Masters Degree, the Capital District Center for Independence hired me to facilitate a break through program recently put into New York State Law.  The Consumer Directed Personal Assistance Program was a new paradigm of home care that shattered the medical model of disability – offering responsibility and autonomy for those individuals deemed self-directing.  Due to administrative difficulties at the Center for Independence, the organization laid me off so I continued my position as a volunteer.  I built the infrastructure of the program within five local counties and in January 1997 incorporated a nonprofit organization to eventually take over the program:  Consumer Directed Choices, Inc.

        I made the transition into the English Department's doctoral program beginning in September 1999 and also began an assistantship.  I taught during the Fall 2000 semester and am currently teaching a class as well.  In June 2000 The Center for Independence hired me as a consultant to move Consumer Directed Choices forward into operational status.  I still directed the current program and began building the new organization's infrastructure.  Academically, through the advise of my advisor, Dr. Ronald Bosco, I began to research the option of a Supporting Field within the English program.  I chose Public Administration and took two classes during the Fall 2000 semester:  Cultural Analysis of Organizations and Issues in Not-for-Profit Management.  After beginning the classes and continuing to build Consumer Directed Choices, I began to feel more alive than I had in some time.  I had been narrowing my focus and was quite interested in the cultural bias toward institutionalization, especially within Public Policy viz a viz Medicaid.  Along that plane, home care aspects of the traditional agency model, when contrasted with the Consumer Directed model were sites of inquiry and theorizing.  When I discussed these thoughts with peers the response usually was:  What does that have to do with English Studies?  Even though I felt these subjects were relevant to English Studies, I felt the discipline had possibly offered me what it could and I was happy with what I discovered within Public Administration.  To combine my theoretical expertise with research approaches will be a novel and thrilling direction for me to take.  I have thought further regarding my focus and my goal is to use my experiences as both a user and administrator of the Consumer Directed paradigm, and as an academic to forge an implementation plan for MiCASSA, the Medicaid Community Attendant Services and Supports Act, Senate Bill 1935, proposed Federal Legislation that would end institutionalization bias.

         I obtained special permission through the English Department to take Public Administration courses this semester while maintaining my teaching and funding.  I have met with both Norma Riccucci and Frank Thompson regarding this “shift,” with both offering advise and support.  Through their advisement, I am currently enrolled in three relevant courses:  PUB 506, Implementation and Impact; PAD 675s, Public Policy Advocacy and POS 521, The American Political System.  I intend to work within the Public Administration field “Politics and Administration” applying these five classes toward my field.  I will take my core beginning September 2001 and will complete the field course work after those classes and the comprehensive exam.

        I look forward to working with the department.  If you need additional information, please contact me right away.