We Are Not Children, We Are Not Slaves: Living With a Brain Injury- Part I

Discrimination denies people what they deserve – their freedom.

I have lived with a brain injury for nearly 20 years and have worked in the field for nearly 15 of those years. Raised in a civil rights family I am very much an advocate for every individual’s right to be who they are, in safety, with equality, in the world they live in. When I talk with survivors of brain injuries in this state and others, the number one complaint I hear is They treat us like we are children. Tragically this is true.

My injury was sustained when I was held-up and shot in the head at point blank range in 1984.

The dehumanization of people with brain injuries (of people with disabilities) is epidemic in scope. In too many instances those who live with brain injuries are treated by health care providers as chattel. Living things used to make money for the greedy. No matter how you hold this truth up to the light, it is a form of slavery: emotional, spiritual and physical slavery.

My state, New York State, offers what in common parlance here is referred to as the Medicaid Waiver. The waiver is a form of Medicaid reimbursement for healthcare providers who offer services to people with brain injuries who live in the community. While the lives of many brain injury survivors has improved as a result, the lives of many on the waiver have been turned into a form of community-based incarceration.

This is not a situation that calls for broad brush strokes. There are waiver providers in this state who, in my view, do an extraordinary job. The Cortland Community Re-Entry Program in Cortland and Living Resources in Albany are two superb providers. Others, like the Albany-based Belvedere Brain Injury Program is not even close to its website’s claim that it is “the Capital District’s leading traumatic brain injury community rehabilitation program”. An arrogant and unfounded claim if ever there was one.

to be cont’d


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