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People with disabilities want autonomy and freedom at end of life

A powerful guest commentary by Michael Martignetti, suffering from Friedrich’s ataxia, a horrible neuromuscular degenerative disease.

Mr. Martignetti writes:  “I co-founded the Ataxia Support Group in Boston in 2000, so I know the ravages of this disease, what awaits me at the end of my life, and it will not be pretty. Friedreich’s ataxia causes: 1) the spinal cord and peripheral nerves degenerate, 2) diabetes in some people, and 3) various forms of heart disease, including heart enlargement and cardiac failure.  That is why I testified last September before the Massachusetts Joint Public Health Committee in favor of the End of Life Options Act (H.1194/S.1225) that lawmakers plan to reintroduce in January…. If this legislation becomes law, I do not know if I would use this end-of-life care option if my condition becomes terminal. But I do know that I would want the option to make that decision.”

He concludes, “As a person living with a disability, I want the same autonomy and freedom as anyone else to make my own healthcare decisions at the end of life.”

Read the full text, published September 28, 2018, at lexington.wickedlocal.com,

2018-10-04T20:22:06+00:00October 4th, 2018|