If my family had listened to the doctors . . .

Slideshow

I wouldn’t be able to tell you my story:

Never take ‘no’ for an answer

by Terrie Lincoln

If my family had listened to the doctors 12 years ago, I wouldn’t be able to tell you my story.

My name is Terrie Lincoln and I am a 31 year old quadriplegic. I live in Rochester, New York and work as a Systems Advocate at the Regional Center for Independent Living. I have a degree in social services and a bachelor’s degree in public administration. I am currently working on my master’s in social work.

At the age of 19, I had an automobile accident. They had to use the Jaws of Life to free me from the wreck and rush me to the hospital. After I got there, my family and friends learned I severed my spine and broke my neck. At that moment I had no idea what was wrong with me, since I was in shock and slipping in and out of a coma.

I was air-lifted to a nearby hospital in West Virginia a few hours later. The doctors then told my parents they were going to do emergency surgery on my neck — a neck fusion. They had to put a plate in my neck. The doctors also told my parents while I was being prepped that there was no way I could survive a broken neck. They said nobody lives with a broken neck. My Mom said: “We’ll see about that.”

The surgery turned out well and I started recuperating. While I was lying in the hospital bed that did not rotate because they did not want to injure me more, the doctors would come in and ask my mom if she was ready to pull the plug on me. “Why would I want to do that?” she would ask? The doctors answered, “What kind of life will she have— she won’t. She won’t be able to dance, walk, work, have a social life, or be independent.”

Read Terrie’s full story.

Pennsylvania: Another Reporter Takes a Deeper Look at Elderly Homicide-Suicides

media coverage, mercy killing, Our News & Commentary Blog, Pennsylvania, research, suicide-homicide

Last September, this blog discussed an article from a Pennsylvania newspaper that took a thoughtful, in-depth look at the tragically growing trend of elderly homicide/suicides.  When that story was written, there had been three such cases in the state since June of that year.

The number is now up to at least 6 in the last year.  Terrie Morgan-Besecker takes another in-depth look at elderly homicide/suicides and interviews a number of people about the larger picture (including me) to get beyond the ‘mercy killing’ theme that dominates the coverage of these tragedies.

An excerpt that includes a bit from my interview is below.  From The Abington Journal, here is a sample of ‘Loved to Death‘:

But researchers who have studied murder-suicides among the elderly say they’re troubled by society’s tendency to view such deaths as mercy killings.

“One of the concerns is you don’t want to make it sound like it’s a viable thing to do,” said Sonia Salari, a professor in the Department of Family and Consumer Studies at the University of Utah. “If we romanticize it, it makes it sound like it’s OK.”

Statistics regarding the number of elderly murder-suicides committed each year are difficult to come by, as no agency specifically tracks that category of deaths, Salari said.

In a 2005 study, Salari analyzed 225 intimate partner murder-suicides involving couples where either the victim or perpetrator was at least age 60. She gathered the data from news reports, police reports and obituaries published from 1999 to 2005.

The research showed that in 55 percent of the cases, health issues – involving either the victim or perpetrator – were cited as a contributing factor. Approximately 7.5 percent of the victims had some sort of dementia.
Compassion or murder?

Salari said that, while she sympathizes with survivors who view the deaths as an act of compassion, society cannot lose sight of the fact that a person’s life was taken, often without their consent.

“Some people don’t consider it domestic violence, but we need to see it as that,” she said. “You have two deaths … Most of the time the victim is not in on the plan.”

Stephen Drake, a spokesman for Not Dead Yet, a nonprofit group that opposes assisted suicide laws, also expressed concern over how murder-suicides among the elderly are viewed.

“These are acts usually of desperation, not compassion,” he said. “These are people who are feeling depressed or overwhelmed. It’s often a consequence of an emotional crisis.”

Please read the rest of the article here.  –Stephen Drake

‘Second Thoughts’ Director John Kelly in Boston Globe Article on Assisted Suicide Referendum

advocacy, assisted suicide, boston globe, disability activists, john kelly, Massachusetts, media bias, media coverage, Our News & Commentary Blog, referendum, Second Thoughts

Yesterday’s (April 29) edition of the Boston Globe featured a long article about some of the issues and players central to November elections in Massachusetts when voters will decide whether or not to legalize assisted suicide in their state.

The good news is that John Kelly, director of Second Thoughts – people with disabilities opposed to legalization of assisted suicide – is one of the people featured in the article.  The bad news is that, in line with the general pro-assisted suicide slant of the article, he’s given little actual space in the article in which to articulate the disability rights community’s opposition to legalization of assisted suicide.  Below is a great picture the ran of John, followed by his comments in the article:

Opposition extends well beyond the church pews, though, with some self-described liberals, doctors, and specialists in end-of-life care mobilizing against it. A number of them object on moral grounds, believing suicide is wrong and doctors should never abet it; others fear that the sick will be misdiagnosed and end their lives prematurely. “Assisted suicide sounds good in a world where we have perfect knowledge,” says John Kelly, a longtime disability rights advocate in the state who’s helping organize opposition. “It’s impossible to forecast accurately how long someone has to live.”

The reporter – Scott Helman – didn’t even mention that John is the director of an organization that opposes legalization, which to most readers will translates as meaning John Kelly is only representing himself in this article and in this issue.

Similarly, the longest passages given over to individuals are to proponents of assisted suicides – and perhaps more importantly – their stories.  Stories tend to stick with readers longer than policy analysis – on either side of this debate.

Also, and most harmful to disability activists in this political fight, when Helman invokes Kevorkian’s name he omits mentioning that most of Kevorkian’s body count consisted of non-terminally ill women with chronic conditions and disabilities.  That piece of information makes the insistence of disability activists that we be part of this debate a lot more comprehensible to the general public.

I’m hoping John can write sometime this week with some reactions and reflections on this experience and how to better fight this uphill battle in the media – the same uphill battle we’ve all been fighting on a national level for over 15 years.  –Stephen Drake

To read the whole article, you can access either this link or this one.

NDY President Diane Coleman in DC with ADAPT! (Fighting for Medicaid)

ADAPT, civil disobedience, diane coleman, disability activists, Medicaid, Noah Wyle, Our News & Commentary Blog

This week the NDY blog will once again feature a mix of the usual NDY-related topics but also bring news of the current Spring Action of ADAPT in Washington, DC.  Here’s a slightly edited intro to ADAPT and NDY’s relationship to ADAPT and the policies ADAPT advocates for:

First and foremost, NDY is a disability rights group – and without ADAPT’s example and longstanding leadership on disability rights issues, NDY might not exist at all.  Second, NDY’s concerns aren’t limited to opposing legalization of assisted suicide and euthanasia.  We oppose any policies or practices that threaten the lives of people with disabilities.  And make no mistake – the proposed cuts to Medicaid – under the laughable guise of “shared sacrifice” represent a big threat to the lives and welfare of people with disabilities of all ages.

NDY’s president and founder Diane Coleman is with ADAPT this week.  I’m still here holding down the NDY fort while she’s away.

Here’s a little you should know about ADAPT’s mission this week:

PEOPLE WITH DISABILITIES ARRIVE IN DC TO FIGHT FOR REAL MEDICAID REFORM

Washington, DC—ADAPT, the national disability rights action group known for its direct action tactics, will take the nation’s capitol by storm with a three-day series of actions Monday April 23 through Wednesday April 25. The actions will highlight the failure of the Federal government to protect community based services for very low income people with disabilities who rely on Medicaid. Adding to the Medicaid budget crisis throughout the fifty states, the Supreme Court’s consideration of the constitutionality of the Affordable Care Act is creating unprecedented tension over the fate of millions of Americans with disabilities.

“The public presence of advocates for Medicare and Social Security is extremely visible, but the voice of people with disabilities who need Medicaid services has been often overshadowed at the federal level,” said Bob Kafka of ADAPT of Texas. “We are here to make it plain to Congress and the administration that we want action, not just words.”

“My state is relying on Federal Medicaid dollars to shore up services that are seriously at risk from a projected $2.7 billion cut to the state’s Medicaid budget,” said Rahnee Patrick of Chicago ADAPT. “These services include things like durable medical equipment such as wheelchairs, which both I and my husband need. They include pharmaceuticals. They include transplants. Everything is at stake. “

Added Marsha Katz of Montana ADAPT, “Cutting or changing Medicaid without thoughtful reform has very real life or death consequences for people with disabilities and people who are aging who live on fixed incomes that are significantly below the poverty level.   Washington should be putting our tax dollars into cost-saving community based services, not costly nursing homes and institutions. The time has come to get real about how we spend Medicaid dollars. Medicaid really does matter.”

“When Congress’ idea of Medicaid ‘reform’ is creating block grants to the states, that demonstrates a real lack of political responsibility to ensure that vital services and supports reach the people who most need them,” said Patrick. “Block grants create a lack of accountability in spending because every state will administer Medicaid differently. We need to make sure that Medicaid dollars go to support the people who need Medicaid.”

Hundreds of activists from across the nation will participate in these actions, many of whom currently rely on Medicaid for their independence, health and safety.

People in and outside the disability community probably want to know that actor Noah Wyle (ER, Falling Skies) is marching with ADAPT this week (I hear he was arrested today along with ADAPT activists).

Below is a picture of Noah Wyle sitting on the left, next to Diane Coleman, who has a tight grip on her coffee:

If you want to follow this week’s actions in DC, here are the ways you can follow and look for opportunities to help our warriors in DC:

1. “Like” the National Adapt group page on Facebook. The page “Nationaladapt
Freeourpeople” is no longer working so we are asking all our Facebook friends to “like” the National Adapt Group Page instead. You can find it at: http://www.facebook.com/NationalAdapt.The top cities with more then 10 people each people “liking” this page are: Austin, Chicago and Philadelphia! Recruit your friends to “like” our page so your city can join this elite list. Austin leads the way with 26 “likes.”

2. Follow the Twitter account @nationaladapt. If you do not have Twitter, you can still read our messages by visiting www.twitter.com/nationaladpt and refreshing the page every so often to see the latest news. We are proud to report that we have 3,165 people following the Nationaladapt tweets from all over the world. Be prepared for a thunderstorm of tweets through Thursday morning. We plan to kick some butt. Photos live from the site will also be posted via Twitter.

And of course, daily reports are available from the ADAPT Action Report compiled by Tim Wheat of Boulder ADAPT, which can be found at http://www.adapt.org/freeourpeople/2012/.
Daily reports are often posted very late at night or in the mornings and they have some good eyewitness reports.

BE ON THE LOOKOUT for Twitter or Facebook messages from us asking you to take action by making phone calls or letters. In the past, you have been so helpful by blitzing our targets with messages when asked—we will need your help again. Even though the physical action is happening here in DC, ADAPT actions are really about everyone taking action everywhere. You are with us, from Seattle to El Paso to Miami to New Hampshire.

One more thing:

On Sunday, ADAPT had a FunRun to raise funds for ADAPT.  Diane Coleman was a runner and it’s not too late to pledge or to donate a flat amount.  I, since I’m in Rochester, am listed as a ‘virtual runner’ meaning I was there in spirit.  You can support ADAPT and NDY through a donation to my ADAPT page as well.  The links are below:

Diane Coleman’s FunRun Donation/Sponsor Page

Stephen Drake’s ‘Virtual Runner’ Donation/Sponsor Page

ADDENDUM – Diane Coleman was one of the over 100 ADAPT activists arrested today!

Dr. Phil: Promoting Killing People with Cognitive Disabilities – And a Close Encounter in 2002

Annette Corriveau, Carol Carr, Dr. Phil, euthanasia, Geoffrey Fieger, mercy killing, murder, Our News & Commentary Blog, Phil McGraw, promoting murder

The first time I ever heard of Dr. Phil McGraw was in the late summer of 2002 when I got a call from one of his producers.

First, she had to explain to me just who “Dr.Phil” was.  By now, anyone reading this knows his history with Oprah and his trajectory into his own show, so I don’t have to go over that part.

Once the producer got over that part, she got to the point of her call.  The show would start airing soon and they were planning and taping the first shows.  They planned to do a show on Carol Carr, who, in June of 2002, had walked into the nursing home where her two sons resided in Griffin, Georgia.  She went to the room that they shared and shot both men dead.  Both men had Huntington’s disease. Michael Randy Scott was 42 and Andy Byron Scott was 41.

What they planned for the show, she explained, was to hold a sort of ‘mock trial’ for Carol Carr.  They would have ‘experts’ debate the pros and cons of treating her shooting of her sons as a murder vs. exonerating her as having performed an act of mercy.

They already had their ‘experts’ lined up, but didn’t say (so far as I can recall) who they were.  What she wanted from me was to get one person from Not Dead Yet to show up to be in the audience for the taping – where, they would probably get to ask one question or make one statement.

After getting her office phone number, I told her I’d see what I could do and went to discuss the issue with Diane Coleman.

To make a long story short, we were faced with trying to get someone from the Los Angeles area to commit to go with very little warning. That individual would then be faced with trying to arrange transportation to the show – not an easy thing in the LA area for the chair-users we knew.   It seemed like an awful lot of work to ask of someone else – a commitment which would eat up a significant portion of their day – for the possibility they might get to ask one question or make one statement.  This in the context of a show that looked rigged to go very much against people with disabilities.

We reached the conclusion that the best thing was to refuse to cooperate with the show.

I called the producer back and explained that we decided not to even try to get someone to the show and started to explain why.  We believed the show was a bad idea, plain and simple.  They were going to have some ‘experts’ on a stage – none of whom knew anything about supports for people with disabilities or how disabled people can have a great quality of life with supports – and discuss whether the killing of Michael and Andy Scott were “real” murders.  I explained that there was a nationwide trend for the murders of disabled people to be treated as insignificant, compared to other deadly incidents of domestic violence.  Further, it was clear that the pattern didn’t result so much from sympathy for the killer as it did from devaluing and objectification of the victims.

I said it was offensive to put the worth of the lives of disabled people on trial as an entertainment exercise.

She disagreed with the characterization.  I assured her that we would be willing to issue a national press release as soon as we watched the episode (which I had no doubt would meet our expectations).

In the end, the show never aired – which means, I guess, that they never actually did that show.

Maybe the threat of a press release and negative publicity resulted in the decision not to go with the show.  But I suspect that if it was anything I said at the time that actually had an impact it was near the end of the conversation.

I had gone back to the issue that the idea of debating the value of disabled lives for entertainment was offensive and she told me that she didn’t think it was.  I told her, that as a white male, when black women tell me a certain portrayal of them is offensive I trust and respect their evaluations over the assurances of other white males that there’s no problem.  After a slight pause, she responded quietly with, “well, I am a black woman and I know what you mean.”  The call closed with my promise that I’d keep a lookout for the particular show when the Dr. Phil Show started airing.  After two months of watching the TV schedule diligently, I gave up and figured they just didn’t do it.

Well, that was then – Dr. Phil has been on the air for almost ten years.  And he’s shown a tendency to jump on headlines and to exploit breaking human interest stories – and the people at the center of them with enthusiasm. You can check out the Wikipedia entry on “Dr. Phil” to see a series of his greatest hits – accusations of unethical conduct, and various other not-so-nice things – most having to do with the good doctor having done something involving the exploitation of a situation or someone’s personal trauma to boost his show, his ratings and his ‘brand.’  This MSNBC news story about accusations of exploiting Britney Spears’ very public emotional meltdown(s) back in 2008 is also very informative about the “ethical grounding” of good ol’ Dr. Phil.

So I guess it wasn’t really all that surprising when Dr. Phil and his staff took notice of the controversy – and attention – garnered by Global News in Canada with its ‘Taking Mercy’ show which promoted the idea that parents should be able to kill their children who have intellectual disabilities.  The show centered around Annette Corriveau, who has two adult children who have a progressive genetic condition called Sanfilippo syndrome.  It aired on April 13, 2012.

Since, as usual, the main concern of Dr. Phil and his staff is providing programming that will grab attention, there was no honest exploration of ethical issues when he, in turn, had Annette Corriveau on his show.  In addition to Corriveau, he had Geoffrey Fieger – who not only defended Kevorkian, but also helped him pick out and eliminate ‘candidates’ for assisted suicide based on what he believed Kevorkian could get away with.  Fieger has never criticized any homicide labelled a ‘mercy killing’ that he’s been asked to comment on.  The third ‘guest’ was a woman identified only by her first name – ‘Ruthi’ – who is described as having four birth children and three step children; we’re also told that three of her children have ‘special needs’ and suffer from disorders.  She is appalled at the idea of killing people with intellectual disabilities.

The show opens with a brief intro of Corriveau. After that, we’re treated to an interview of her conducted by one of the producers while video from the ‘Taking Mercy’ show runs in the background.

Over the course of the opening (which takes over half of the show segment) we are shown and/or told the following:

  • Video shows Corriveau’s two children from childhood to recent pictures as adults.
  • Aside from the cognitive and physical disabilities developed as a result of the condition, much is made of the changes in their appearance as they got older (implying the ‘not normal’ appearance is also tragic).
  • She institutionalized them both when they were young.
  • She visits them every two months, but doesn’t touch them, because they don’t react to her.  We hear nothing about whether or not they react to staff people they see every day..

After that, Dr. Phil does a little back and forth with Corriveau, making mild protests about not knowing what they would want and how it’s different from withholding treatment.  He also says he wouldn’t want to live “like that.”

Next he goes to Geoffrey Fieger, who says what she wants is perfectly reasonable and merciful and that the law is stupid.  No one who knows anything about Fieger can be surprised by his take on this – not even Dr. Phil – but I suspect he invited Fieger on the show precisely because he knows what Fieger’s take will be.

Next he goes to ‘Ruthi.’  We don’t get to see any videos of Ruthi’s kids.  She might be an articulate advocate in other venues, but she’s been outmatched here.  Not only does the “I want to kill my kids” mom have the stage, but interruptions by Corriveau and Fieger eat up over half of the little time Ruthi has to voice her objections to what is being promoted that day.

Next – he asks for a show of hands from the audience – how many agree that Corriveau should be able to ‘mercifully’ kill her kids?  It’s no surprise that an audience that has sat through a presentation in which Corriveau’s honesty, compassion or motives are never questioned – and backed by a leading advocate of anything that gets called ‘mercy killing’ (Fieger) – about 90% of the audience back Corriveau.  By doing so, they’ve also written off the lives of anyone with a significant cognitive disability.  It’s a bad day for people with disabilities, but a great day for Dr. Phil – who loves great theater.

There’s a feature after every show called “Dr. Phil Uncensored.”  You can check the link and track down the one for the show “Deadly Consequences” – the obviously scripted interaction between Dr. Phil and his staff is pure bullshit from beginning to end regarding the ‘mercy killing’ segment.  They express surprise over the audience vote and congratulate themselves, saying that “all the arguments were brought to the table” and that  “we got both sides out”.  That’s just crap – they’re all too smart not to know they loaded the dice and ended up with exactly the show they planned on.  They’re just counting on audience gullibility.

This is a link to the main story site of “Deadly Consequences.”

As another person outraged about this said on Facebook, Dr. Phil really is no different – or better – than  Jerry Springer, who reigned for years as the exploitation circus king.  The difference between Dr. Phil and Springer is that Springer never seriously claimed to be ‘helping’ anyone.  Far too many of Dr. Phil’s fans think he’s some sort of kind professional, when in fact he’s just another self-promoting entrepeneur working hard to separate gullible people from their money.