On Bill 5-382
December 8, 2014
By Norman A. Smith,
President, Board of Directors
Progressive Center for Independent Living
Thank you for the opportunity to testify on S-382. My name is Norman Smith, and I am president of the Progressive Center for Independent Living, which is a nonprofit that is staffed and administered by people with disabilities to advocate for people with disabilities. We serve Mercer and Hunterdon Counties.
I’m also here on behalf of Resources for Independent Living that serves Burlington, Cape May, Cumberland, and Salem Counties. I’m also representing the Alliance Center for Independence that serves Middlesex, Somerset, and Union Counties. All three of these New Jersey Centers for Independent Living have their policies set by people with disabilities and all three of these organizations are opposed to doctor-prescribed suicide as being dangerous to people with disabilities.
I’m here today because for the past 35 years of my life I have advocated for people with disabilities in New Jersey. I’m the co-founder of Project Freedom Inc., which as built nearly 500 apartments designed for people with disabilities in four counties. No less than five different New Jersey governors, Republican and Democrat, have appointed me to two state disability councils. I chaired NJ Statewide Independent Living Council for five years and was the vice chair of the NJ Developmental Disabilities Council for four years. My sole focus has been on issues impacting the lives of people with disabilities, but especially impacting people with severe disabilities and how society treats us.
I’m here as a New Jersey advocate because, frankly, this bill scares me as a person with a severe disability. It scares me because there is no protection in this bill against coercion or outright criminal behavior. As a person who has a speech impairment, I see no protection in the form of an outside third party to verify a person’s wishes. As a person who works with cognitively impaired people, I see no protection for them in this legislation. This bill is flawed; it is dangerous. It is bad medicine.
A personal story that may explain my fear: I have had the unfortunate experience of dealing with doctors in emergency rooms. Often I can see the look in their eyes: their cold look of indifference as they deal with my medical situation and my Cerebral Palsy. My life has no value to them because they see my disability first. “Better off dead than like that” is in their eyes.
But then I can see their attitude change as they learn that I’m married, that I have a six-year old son, and that I have a job with responsibilities. They discover that I have a life that they put value on.
These are the same people who will be sitting in judgment on whether to prescribe life-ending drugs based on the word of a caregiver. This judgment may be rendered regardless if the caregiver has a conflict of interest. It scares me, and it scares a lot of other people with disabilities in New Jersey. I am here speaking for those who cannot speak for themselves.
I may not have a medical degree, Mr. Chairman, but I do live the life as a person with a severe disability, a person looked down upon, a person who others think would be better off dead. This bill is dangerous, flawed, and very bad medicine. I ask the committee not to release it. Thank you!