Wheelchair user who was shouted down at health care reform town hall meeting in NJ speaks out

From AAPD's Justice for All (JFA) Activist blog:

from the JFA Moderator: The following is a Guest Column written by Marianne Hoynes who was heckled and booed while trying to speak at a health care town hall.


We who need health care reform are real people, really suffering
by Marianne Hoynes

A couple of weeks ago, I in my wheelchair went to a NJ town hall meeting to learn more about the new health care bill. I thought this would be a good time to share with my congressman what it is like to be sick in America today.

I am on disability. I have been diagnosed with Rheumatoid Arthritis and Sjogren's Syndrome, two auto immune diseases, where my body sees my healthy connective and mucous tissue, mistakes them as unhealthy, and attacks them, causing irreversible damage. I spend half my day in a wheelchair because of degenerative disk disease.

The stress of living with chronic illness, waking up every morning in severe pain day after day, can drain me of hope. The financial stress added to that is almost unbearable. My disease is all but invisible, so I have to get expensive imaging tests to track its progress. Some medications are a thousand dollars plus a month.

Knowing every day, that I am the reason my family is being driven from middle class into poverty because of the cost of my health care , is a huge burden to bear.

We who need health care reform are real people, really suffering.

To my dismay, I entered a room filled with a screaming, angry mob, whose purpose was to shout down anyone who wanted to speak. My sense of right was stronger than my fear of sharing something personal and painful about my life in front of these bullies. They were not going to stop me from saying what I had to say.

I started with the terrible story of Kitty Genovese, murdered in the streets of NY in front of 38 witnesses, calling out for help, as they turned their backs on her. This was later defined as the "bystander effect"; a social phenomenon where individuals will not offer someone help during an emergency while others are present. The greater the number of bystanders, the less likely they are to offer assistance. New Yorkers earned a bad reputation of being cold and uncaring.

This seemed a fitting analogy to the tens of millions of Americans who are being driven into poverty and homelessness because of catastrophic illness, while the world watches. What happens to the least of us in our society defines who we are as a nation. We were so ashamed to hear that story of Kitty Genovese. We as a society need to have more shame over how we treat the sick, physically and mentally challenged in this country. This could happen to any of you.

When I got sick, the health care and pharmaceutical industries strapped me on like a feed bag, and began sucking me dry of everything I worked hard for in my life. There is no regulation, no one to protect me from this extortion, no one to help me until I and my family become destitute and have to take charity, welfare, food stamps.

Reasonable health care is a basic human right in every developed nation in the world. Americans are the only ones who do not see it that way.

This country needs to see health care as a basic human right, not a privilege. And make no mistake, the world is watching. We, once a revered Superpower, are now becoming known as a nation who profits from its most vulnerable population, and treats its sick as a financial commodity, feeding from us until we are destitute. We need to allow our sick and disabled to live with some dignity, afford needed medication and treatment, much as we did once for our elderly. Anything less is inhumane.