The Future of Health Care in Connecticut: Paths to Equity and Good Health for All, April 25

Much of what influences health happens outside the doctor’s office. How can we build strong and meaningful links between the clinical care system and the communities where people live?
Wednesday, April 25, 9 a.m.-2 p.m., join the CT Health Foundation and a panel of experts to explore ways to improve health outcomes and ensure the health care system works for everyone, at the Connecticut Convention Center, 100 Columbus Blvd., Hartford. For information and to register, please contact the CT Health Foundation at (860) 724-1580, email: info@cthealth.org. Free but space is limited so please only register once. If you register and can’t attend, please let us know so we can give your ticket to someone else.

Guest speakers include Dr. David Williams, Norman Professor of Public Health, Harvard Chan School of Public Health; Dr. Soma Stout, Vice President, Institute for Health-care Improvement; Dr. Elisabeth Rosenthal, Editor-in-Chief, Kaiser Health News and author of An American Sickness: How Healthcare Became Big Businessand How You Can Take It Back.

Mary Johnson, March 29, 1922-Aug. 13, 2017

It is with great sadness that the Progressive Action Roundtable Planning Committee informs our readers that Mary Johnson, a founding member of PAR and leader, strategist and active participant in most of PAR’s committees, has passed on.

We dedicate this issue of our newsletter to Mary. Without her guidance, ideas for informing the public and each other of rallies and events, optimism in the struggle for justice and her persistence in fighting for people’s rights throughout the years, there may not have even been a Progressive Action Roundtable. We all owe so much to her.

Frank Panzarella, “Mary was the den mother for most of the New Haven activist community.”

Mary was directly active in many of the organizations that are PAR-affiliated. She was also active in most of New Haven’s progressive organizations. She most likely was a founding member of many.
She was a great political and personal influence on many. PAR encourages our readers to send in their reminiscences of her. In the words of Frank Panzarella, “Mary was the den mother for most of the New Haven activist community.”

A memorial is being planned for her with details upcoming.

In the News — Not Dead Yet and Second Thoughts Connecticut

by Elaine Kolb, Second Thoughts Connecticut

On Dec. 15, I submitted the following testimony to the New Jersey State Senate against a bill to legalize physician assisted suicide in that state:

My name is Elaine M. Kolb, member of Not Dead Yet and Second Thoughts Connecticut, and I am testifying against the assisted suicide bill, S382. Thirty-eight years ago, I was stabbed in the back, resulting in a spinal cord injury. Now, at 65, I am also officially old.

Sixteen years ago, at this time, my partner for eleven years, Patti Deak, was in the hospital. Weakened by chronic bronchitis, asthma, scoliosis, and a life-long neuro-muscular disease, she developed pneumonia and both of her lungs collapsed. Growing up with a disability, which relentlessly became more profound, Patti was told that she should expect to die young. She endured the insults and injuries of a culture which did not recognize her as a full citizen. Her whole life was a struggle for needed equipment, treatments and services. Remember, it was not until 1975, with the passage of the Education for All Handicapped Children’s Act, that public schools were required to even begin to attempt to include and teach children with disabilities.

Prejudice against people with disabilities of all ages continues to be extreme, sometimes deadly. Among those of us with long-term, visible disabilities, we share some terrifyingly common horror stories. Family, friends, even perfect strangers will say something like, “Oh, I could NEVER be as strong and brave as you are. If that happened to ME, I’d rather be dead.” Not a compliment. We experience insults, along with every kind of injury.

Patti Deak loved her life and our life together. So, when both lungs collapsed in December 1998, she decided that she was willing to go on a ventilator. Then we had to fight to get to pulmonary rehab at Gaylord Hospital, so she could come home. Sadly, she had further complications and went on hospice care. She died on March 10, 1999. She was forty. Patti Deak lived and died with dignity, with multiple disabilities, using a power wheelchair, hospital bed, Hoyer lift, hearing aids, and a ventilator.

When some non-disabled folks talk about “death with dignity,” they actually mean “death before disability” or “death before Depends.” With cut-backs in so many essential services, the message behind assisted suicide is that death is cost-effective. For those of us in danger of being denied what we need to live, “Compassion and Choice” feels more like “Contempt and Coercion.” We want to live with dignity and the recognition that our lives are beautiful and valuable and meaningful, just as we are.

Extend palliative care, hospice services, and end-of-life counseling. PLEASE do NOT pass assisted suicide in any form, including S382.

[NOTE: A similar bill will be presented again in the next Connecticut legislative session. Please contact your representatives to express your opposition. There will be more details in the February issue of PAR.]