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Yearly Archives: 2015

BY ETHAN ELLIS
Advocate

Fall is the season for Disability Pride Parades. I’ve never been to one because the idea makes me uncomfortable, but this year I decided to go to the one in Trenton and take the family.

It would be a good experience for my son, Ethan James, who is valiantly coping with his schoolmates’ reaction to his having two parents with cerebral palsy. Janet and I would see old friends in the movement and I’d test my concerns experientially.

But I got sick at the last moment and we couldn’t go so I’ll have to sort out my concerns here where you get to watch and comment.

I get the impulse behind it. I was born with a disability and grew up believing something was wrong with me. That’s the message I got from most of the people I met: “Something’s wrong with you so it must be your fault.”

It took years to replace that shame with pride in myself and what I can and have accomplished.

I also understand that it might have been easier to get there if I had the support of others with disabilities, struggling with the same issue.

But now it’s me that I’m proud of, not my disability. Cerebral palsy is still a nuisance to an absolute barrier and everything in between, depending on the circumstances. The only thing about it from which I derive pride is my ability to overcome its limitations.

That’s quite different from the experience of those who celebrate Black Pride or Gay Pride.

They are celebrating aspects of their lives that elicit genuine pride no matter what others may think: belonging to great cultural tradition or celebrating a sexuality from which they are now free to derive guilt-free pleasure.

The other thing that bothers me about disability pride is its potential to divide, rather than unite.

While it may help some people overcome the stigma of growing up with a disability, it does little for most people who acquire
disabilities as adults and that’s most of us – 85 percent of us in fact.

I can’t imagine anyone being proud because they have arthritis or a heart condition or cancer, the top three causes of disability in this country.

Nor can I imagine it helping us unite politically with senior citizens, who make up more than half of people with disabilities here.

Finally, if you really think about it, there’s something really weird about a Disability Pride PARADE. Of all the things we can all do together with equal skill and grace, marching isn’t one of them.

While I don’t mind marching in protest or in support of something important to us all, I find the idea of putting the inabilities of some of us on display or excluding them altogether for a celebration, to be exclusionary and therefore disturbing.

Instead, why not pick a nice comfortable place and celebrate Disability Unity day or Disability Power Day? Inside the Statehouse can be real comfy.

BY ETHAN ELLIS

ADVOCATE

It started as a routine visit. Every three months I go to the cardiology group to have my pacemaker checked. The technician hooks me up to a machine that prints out some squiggly lines. He looks at them, nods and sends me home.
Not this time. He tore off the test results and disappeared, returning with the doctor in charge of testing. She started ordering more tests, a MUGA Scan and a stress test. I asked if anything was wrong since neither of them had told me anything. She said I had ‘extra heartbeats. “What does that mean?” I asked.
“It could be fatal,” she said, making an appointment to read me the results in three weeks. I was scared. I couldn’t wait that long so I talked the clerk into making it two. I tried to read the reactions of the technicians when they administered the tests but they’re trained not to give anything away so I had to wait another week for the doctor and my anxiety mounted.
“I have good news,” she said as she hastily scanned the test results, which she hadn’t read before. The MUGA scan was negative.”
“What about the stress test?” I asked.
“Oh, we haven’t read those results yet. I’ll call you if anything’s wrong.” Then she said, “Here’s a prescription,” scrawling something on her little blue pad.
A prescription? but you just said i was okay and you don’t even have all the results, I thought. “What’s it for?” I asked.
“It will make your heart work better. Goodbye.”
I got madder and madder on my way to the waiting room. By the time I got there, I couldn’t contain my rage. I began to complain to the receptionist about how I had just been treated. My voice carried and there were about twenty people waiting. They were all ears.
She disappeared and the doctor appeared in a flash and whisked me out of earshot, behind the doors to the treatment area. “If you’re willing to wait, we’ll stop what we’re doing and read the stress test.”
“Okay,” I said and went back to the waiting-room. Two and- a-half hours later, the doctor came out and told me the results of the stress test were fine. By then, the waiting room was almost empty. When I got home, I filed a complaint with the head of the cardiology group and the doctor was disciplined.
It doesn’t matter that I have a Master’s degree; it doesn’t matter that I helped draft the ADA; it doesn’t matter that I worked in New Jersey’s Senior Executive Service for over twenty years and stopped hanging up the awards I’ve received long since for lack of wall space.
I have a disability and nothing I’ve accomplished can overcome that stigma, that rejection by members of society who don’t know me. I’ll die with it…but I’ll die fighting to stop it.

BY ETHAN ELLIS
ADVOCATE

The first Congressional hearing on the ADA was held on Sept. 27, 1988. That morning, 150
of us New Jerseyans boarded a train to Washington, D.C. along with other people with disabilities.

With the state and U.S. flags unfurled, we marched to the Hart Senate Office Building, led by a motorcycle escort. Sen. Tom Harkin, chairing the hearing, said, “I’ve been handed a note saying there are 60 people here from New Jersey.” “Hell no. There are 150 of us,” came the reply. C-SPAN documented it.

Justin Dart met 200 New Jerseyans on his 50-state tour pro- moting the ADA the following spring.
That summer he called to ask if I could get New Jersey’s Senators to support the bill. Colleen Fraser and I organized a bus trip to see Sens. Bradley and Lautenberg. They were on the bill when we got home.

When Pres. Bush refused to sign the bill, 200 of us marched to the White House for a candle-light vigil in the rain. Our songs kept Barbara up until George agreed to sign it. On July 27, 1990, 5,000 Americans, including a large N.J. contingent at- tended the signing on the White House lawn.

A year later, we celebrated at Liberty State Park. It rained so only 900 came, including Gov. Florio. The sun came out when he spoke.

But in 2005, Monday Morning, the largest group of cross- disability activists in New Jersey refused to celebrate. Instead, we carried the ADA in a coffin through downtown Trenton and buried it in a city park. We were ahead of our time.

The 2010 Harris poll found that 62 percent thought they were worse off since the ADA passed. Only 26 percent said they were better off.

Me? My life has been more comfortable. My wife and I eat at more (but not all) restaurants, attend more (but not all) plays and concerts, travel on more planes and trains (but not all) with less hassle and delays.

I was lucky. My parents, both educators, educated me when I was denied a public education. They taught me that I was as good as my non-disabled peers. As a result, I’ve been able to make a good living.

The periactin with dis- abilities, who average less than $18,000 a year, live at or below the poverty line and can’t afford most of the benefits of the ADA or the lawyers needed to enforce it.

After the ADA, law-makers failed to take the necessary next step to guarantee basic human rights to Americans with dis- abilities including the right to food and shelter; to medical care; to education and to a job, to stay out of poverty or equivalent benefits if they can’t work.

All Americans must have these rights. There is more than enough wealth in this society to guarantee them, but until all have them, people with disabilities won’t.

Until then, the promise we once saw in the ADA can not be fulfilled.

By ETHAN ELLIS

ADVOCATE

 

In 2001, while Executive of the New Jersey Developmental Disabilities Council, I began to teach a class on disability policy at the School of Public Health at The University of Medicine and Dentistry of New Jersey  (UMDNJ), now part of Rutgers University.

As a disability advocate, I had testified before five Congressional committees and participated in numerous public hearings conducted by the N.J. legislature. I had even drafted legislation passed by both bodies and served on the Task Force that drafted the transportation section of the ADA.

I knew a lot about disability policy but not about public health and I was about to lecture a bunch of graduate students who did. I rushed to Amazon and ordered a couple of books to cover my ignorance.

The work of one man stuck with me after my panic subsided. Richard Wilkinson, an English epidemiologist, had studied the impact of wealth on public health since 1973 and had found statistical evidence that the public health of a nation depended on the size of the gap between its richest and poorest residents, not on their average wealth.

Thus the Japanese were healthier than their richer American counterparts because the gap between rich and poor there was smaller. They lived longer, had lower infant and maternal death rates, less teen pregnancies, and lower rates of most diseases.

And this wasn’t just true of the Japanese. It was true of all the other developed countries with a smaller wealth gap than the United States, and that meant all of them because the gap here is largest and has grown much larger since Wilkinson first published his research.

Although he didn’t make a point of it, one thing in Wilkinson’s research. struck me where  I live. All of his results had implications for disability policy. High maternal death rates and teen pregnancies as well as high rates of the illnesses he studied were associated with high rates of disability. I knew that from my work as staff director of the Delaware Task Force on Disability Prevention (1988-89). Was there a direct cause and effect relationship? I waited for more data.

It came in 2007, when Wilkinson and his partner, Kate Pickett, published “The Spirit Level: Why Greater Equality Makes Societies Stronger.” In it, they summarized the research on the causal relationship between public health and other social problems that had been done since Wilkinson first published. In every instance, there was a cause and effect relationship between income inequality and social ills in developed countries.

The United States, where the gap between rich and poor is by far the largest, has the highest rates of child abuse, drug and alcohol addiction, juvenile delinquency, violence, crime, incarceration, homelessness, air and water pollution as well as discrimination, and police and civilian violence against racial, ethnic and LGBT minority groups, women and people with disabilities.

All of these social ills result in higher rates of disability.

Next month, I’ll look at why and what we can do about it.


BY ETHAN ELLIS
ADVOCATE



Have a disability? Want a job? Here’s what you’re up against. Only 27 percent of people with disabilities age 16 to 64 have jobs*; 37 percent of those who have jobs work part-time*; and they are paid 37 percent less than people with the same education who don’t have disabilities**.

Based on these numbers, only one-in-five of us have jobs and those of us who do, don’t get paid what we’re worth.

We share this low employment, under-employment, low wages and dodges that prevent us from getting employment benefits with a host of other groups including women, people of color, members of the LGBT community, and others who our country discriminates against and excludes.

It stacks the deck against us in our pursuit of happiness promised us in the Declaration of Independence.

Increasingly, it stacks the deck against anyone who is poor or middle-class, too. In the last 30 years, productivity of American workers has more than doubled but you wouldn’t know it by looking at their paychecks.

During that time, middle-class incomes have increased only 2 percent, while the working poor have lost 4 percent. Meanwhile, incomes of the rich and super-rich have increased four times.

This is no accident. It is the result of changes in government policies at the federal and state levels that have intentionally given tax breaks and other benefits to big corporations and wealthy individuals and incentives to businesses that move jobs overseas and hide the money they make in tax shelters in places like Ireland and the Cayman Islands.

These policy changes have been made in return for campaign contributions and other perks from those corporations and the wealthy.

Poor and middle-class folk like us pay for them with higher taxes, cuts in services, increased unemployment and loss of benefits.

In short, our government has been bought and most of us citizens no longer have any say. Our democracy is gone, sold out from under us.

Other groups are starting to unite in an effort to get our government back and re-democratize it. We must be part of that effort.

In fact, based on need, we should be leading it rather than lagging behind.

It is time to stop viewing our issues as unique to us and solvable by us and see them as part of the larger socio-economic and political picture that requires radical change if it is to truly include us. Until we do, relatively few of us will work and we will continue to be underpaid.

*U.S. Department of Labor, Bureau of Labor Statistics, 2014

**An Uneven Playing Field: The Lack of Equal Pay for People with Disabilities, American Institute for Research, 2014

By ETHAN ELLIS

ADVOCATE

New Jersey’s State Legislature is considering legislation that
would make it legal for you to kill yourself if you’re in enough pain. New York legislators are reportedly considering doing so, too.

It sounds very compassionate and many of the lawmakers believe it is. After all, who wants to spend their last days, weeks or months lying in bed writhing in pain?

And the idea may have special appeal to those of us who just acquired disabilities and don’t think life is worth living or who are already experiencing pain from the ones we have and dread feeling more. I know that dread because, at 81, I already hurt.

However, there’s more to this than meets the eye. Washington, Vermont and Oregon have passed such legislation and it has been a disaster.

Despite the many safeguards against abuse supposedly built into those laws, it has led to the early deaths of many of us who could have lived longer if given powerful painkillers already on the market.

Why?

This legislation is a matter of dollars and cents, not sense. Behind the scenes, its major supporters will benefit financially from ending the lives of people rendered helpless by needless pain, rather than allowing them to live out their natural lives with dignity by paying for the palliative care that would relieve that pain. They’re easy to identify – health insurance companies, hospitals and, in some states, those officials who control or influence their budgets.

If you doubt it, look behind the experience they often cite as successful in Oregon, where this all started. After the law, on which New Jersey’s bills, S 382 and A 2270 are based, was passed with quiet support from state officials, those same officials removed the strongest, most effective painkillers from the list of drugs eligible for CMS reimbursement, encouraging those in unbearable pain to kill themselves because otherwise reliable relief had been put beyond their reach. (To see more on Oregon’s horrors, see http://dredf.org/public-policy/assisted-suicide/oregon-physician-assisted-suicide-theory-vs-practice/.

These killers go from state to state searching for well-meaning lawmakers to introduce and support their murderous legislation. Then they enlist the help of existing pro-suicide groups like the old Hemlock Society or create their own front groups and fund them lavishly to lobby the legislators and conduct slick public relations campaigns to mislead an equally innocent public of the false mercy they’re preaching.

In New Jersey, A 2270 has already passed the Assembly and had its first Senate Committee hearing. While the bill’s lobbyists presented their testimony in person, we were made to submit ours in writing.

But thanks to some great organizing and help from friends, including DREDF and Not Dead Yet, we still outnumbered the killers and won the support of powerful Senators on the committee. But stay tuned.

We may still need your help to save your lives and ours.

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September 2018