Blog recommendation: Smart Ass Cripple on being "A Burden to Society"

There's new blog entry from Mike Ervin at Smart Ass Cripple. 

The Smart Ass is no dummy.  All of the Republicans vying to be president are talking about the sacrifices that must be made by Americans - except for the gazillionaires who have millions stashed away in Switzerland, the Caymans, and other sheltering locales, 

Mike - or Smart Ass - can read the writing on the wall, tell which way the wind is blowing and any number of other clichés that tell him he's just leading way too cushy a life - and much of it on the public dollar.  So in his latest blog, Smart Ass Cripple attempts to crunch the numbers and see what it would take to make him less of a burden on society.

For your education and entertainment, here's the beginning of "A Burden to Society":

Every time I take a leak, it costs the state of Illinois 38 cents. The state pays $11.50 per hour to the people I hire to help me take a leak. That’s about 19 cents a minute. I guesstimate that on average, each leak takes about two minutes, from unzip to zip. If I leak four times daily, on average, that’s $1.52. Extrapolate that out over a year and that’s $554!

Each time I sit on the crapper, that’s about 20 minutes. So that carries a price tag of $3.80 a day or $1387 a year. That’s $1941 of taxpayer money eaten up by one man’s bodily functions!

And that doesn’t even count all the other stuff my workers do for me, such as putting on my pants ($208 a year), brushing my teeth, ($244) and making my armpit smell like a cool sea breeze ($226).

There’s no doubt about it. The numbers don’t lie. I am a burden to society.

IMO, this piece gets even better from this point on.  But you'll have to go to the site to read the rest.  So please go and read the rest of this essay here. --Stephen Drake

The Onion: Brain-Dead Teen, Limited to Texting and Rolling Eyes, to be Euthanized (SATIRE)

I love The Onion.

I'm pretty sure that the writers aren't taking a position on euthanasia here, but doing what satirists do best; they've taken a well-known, overused, emotionally manipulative and predictable script - and then twisted the context.

I apologize for the lack of captioning, but I couldn't pass this up. If there's a good transcriptionist reading this, I promise you gratitude and credit if you want to transcribe this and send the transcript for posting.

So - for those of you who've followed NDY and enjoy satire, enjoy the video. For pro-euthanasia advocates who've checked in to see what we're up to, prepare to be offended by the video story below.

Brain-Dead Teen, Only Capable Of Rolling Eyes And Texting, To Be Euthanized

Update on Philadelphia Transplant Denial to Girl with Developmental Disabilities

I'm happy to share updates on the apparent case of disability bias in a situation involving the denial of a transplant to girl with developmental disabilities, which we reported on earlier this month. 

First, I received this email message from the managers of wolfhirschhorn.org on January 26:

Hello wolfhirschhorn.org followers:

Over the course of the last week, there have been new updates on the situation 
with Mia and the Rivera's status with CHOP. Over the weekend, a meeting took 
place between a number of the key leaders of CHOP, the Rivera's and 
wolfhirschhorn.org. The purpose of the meeting was to get an understanding of 
the chain of events that led to the "Brick Walls" posting. The meeting lasted a 
little over 90 minutes and the Rivera's had an opportunity to tell their side of 
the story and the related concerns about Mia's needs and how CHOP handled the 
situation. CHOP agreed that the system is broken and that they are taking steps 
to fix the process. In addition to addressing Mia and the next steps with her 
transplant discussions, a few suggestions were made to CHOP about their 
involvement in a more macro view of awareness around transplant rights for the 
disabled, and public and medical community education around the "mentally 
retarded" phrase. CHOP agreed to follow up and communicate their action items by 
the end of this week.

Mia and the Rivera's are planning a visit to CHOP in the near future to 
determine CHOP's role in her transplant and her on-going medical care. Once that 
meeting takes place, we will issue a statement on the status of Mia, her care, 
and CHOP's involvement moving forward.

To keep up to date on details of this story, LIKE us on Facebook 
(https://www.facebook.com/wolfhirschhornawareness) and follow us on Twitter 
(@wolf_hirschhorn).

Today - January 31 - the Philadelphia Inquirer reports more good news:

The parents of 3-year-old Amelia Rivera, the disabled girl who was initially rejected for a kidney transplant at Children's Hospital of Philadelphia, now say the hospital is willing to consider such an operation.

The Riveras said they met with medical personnel at the hospital for one hour Friday, after which they were given instructions on how to proceed with a possible transplant - including how to have family members tested as potential donors.

Chrissy and Joseph Rivera said they were not told whether their daughter, who goes by the nickname Mia, would be medically eligible. But the couple, of Stratford, Camden County, said Monday that they saw the meeting last week as a step forward from what happened earlier this month.

"As of now, we're taking this as a positive sign," Chrissy Rivera said.

Read the rest of the article here.

This is good news.  I don't know if we'll ever know the full story.  Maybe this was a case of one doctor's bigotry - or his really really bad communication skills (both are plausible, IMO).  In any case, the current discussions being reported are more in line with the accounts that many individuals have shared regarding their overwhelmingly positive experiences at Children's Hospital of Philadelphia.  It looks like things are working their way toward a satisfying conclusion.  --Stephen Drake

Former "Medical Director" of Final Exit Network Profiled in Wash. Post, Live Chat Monday 2:00 pm ET

Readers of this blog are familiar with the Final Exit Network (FEN), the assisted suicide vigilante cult that has gotten into legal trouble in two states over the roles members of FEN played in facilitating the suicides of a man in Georgia and a woman in Arizona.

The common denominator in both cases is the (now ex) "medical director" of FEN, Lawrence Egbert.  The Washington Post profiled him in the Lifestyle section of its magazine last week.  The Washington Post is also hosting a live chat with Egbert on its site today - January 23 - at 2:00 pm ET.

I just want to share an excerpt from the Post's profile on Egbert, with some comment.  I'll provide info to access the live chat for those who are interested at the end of this post.

From the profile:

About John Celmer, the person "assisted" by FEN in Georgia:

At various times, Sue Celmer said, he was taking Chantix to try to quit smoking, and taking oxycodone or applying morphine patches to manage his constant pain. “Anybody who takes that many drugs is in no position to make decisions about their lives,” she said. “He was like a drowning man, and they saw it as a grand opportunity to promote their agenda and drown him.”

Sue and John Celmer had lived separately for years, but were still close.  A couple of things might have tweaked some kind of red flag for Egbert if he was really into anything other than rubber-stamping applications - Chantix is a drug used to quit smoking; why would someone serious about killing themselves be trying to quit smoking?  And then there's the Chantix, a medication used to aid people in quitting smoking.  Even at the time of Celmer's "application" to FEN, both depression and thoughts of suicide were known to be possible, albeit allegedly rare, side effects of taking that medication.  Since then, it turns out the risks aren't so rare.  Just last November, researchers reported that Chantix was anything but a "safe" drug:

The new study relies on adverse events from the FDA's Adverse Event Reporting System from 1998 through September 2010. They analyzed 3,249 reports of serious self-injury or depression linked to Chantix (varenicline), GlaxoSmithKline's Zyban (bupropion) antidepressant that was approved for smoking cessation and nicotine replacement products.

They found that 2,925 cases, or 90 percent, of suicidal behavior or depression reported to the FDA were related to Chantix, even though the drug was only approved for four of the nearly 13 years of data included in the study.

Granted, this data wasn't available at the time of Celmer's "application" to FEN, but the possibility that Celmer's wish to commit suicide was medication-induced was something anyone other than a zealot would have considered.

In the profile, Egbert denies he's a "true believer" aka "zealot," but the approval rate he claims to have to his credit - almost everyone - is far higher than the claims Kevorkian made.  While impossible to substantiate, Kevorkian claimed he only aided a small percentage of those who contacted him.

Egbert is a quieter and politer man than Kevorkian, and people (like the reporter at the Washington Post) are less likely to brand him a zealot?

But what is it that marks someone as a zealot?  Their manners and demeanor?  Or their actions?

I vote for actions - and by that standard both Egbert and Kevorkian more than qualify as zealots and fanatics, even if one of them is soft-spoken and polite.

You can access the live chat here at 2:00 pm ET.  --Stephen Drake

Georgia: Response Letters to op-ed by Final Exit Network (FEN) president Wendell Stephenson

On January 7, the Atlanta Journal-Constitution published an op-ed by Wendell Stephenson, current president of the Final Exit Network (FEN).  "Ensuring death with dignity" is no longer freely available at the AJC site, but the same essay was published in December last year in the Metrowest Daily News and can still be read here.

It's the usual conflation of terminal illness with chronic illness, sensationalist language describing FEN members and supporters as victims of oppression, etc.  This blog will probably be revisiting Stephenson's piece in the near future.

In the meantime, his op-ed drew some strong reactions that were published in the letters section of the AJC on January 15.  There were three letters - the first one agreeing with Stephenson and the following letters  disagreeing with him.  The letters can all be found on this page.

The first of the two taking issue with Stephenson and his op-ed was written by Eleanor Smith, a long-time disability rights leader and activist who is the founder of Concrete Change, an international network whose goal is to make all new homes visitable.  Her letter:

Right-to-die argument blurs a key distinction

“Ensuring death with dignity” (Opinion, Jan. 7) blurs the distinction between the freedom to end one’s own life, which cannot be denied, and the freedom to have others end one’s life, which endangers the lives of people less valued by society.

The elderly couple referred to in this column chose to inform their assisted-living facility of their intention to starve themselves to death (which the administration, unsurprisingly, could not support). They could have chosen instead to check out of the institution for a short stay with their children. I suspect organizational (rather than personal) advice led to this public confrontation.

Older and/or disabled people can be expensive to support. It is reprehensible to select them as the population encouraged to die before their time — rather than supporting them to live and making them feel welcome in the world.


Eleanor Smith, Decatur

The next letter was from Jennifer Hale, executive director, the Georgia Hospice and Palliative Care Organization.  Her letter:

Final Exit leader’s essay ‘inherently misleading’

The piece by Wendell Stephenson of the Final Exit Network attempting to link the philosophy of hastened death and assisted suicide — or, as he terms it, “self-deliverance” — with the ideals of dignity at the end of life provided through state-licensed and federally certified hospice care providers is absolutely wrong, inherently misleading and seems mildly predatory from my perspective (“Ensuring death with dignity,” Opinion, Jan. 7).

At the Georgia Hospice and Palliative Care Organization, it is our mission to provide education, information and advocacy to the public and to providers of end-of-life care to raise awareness of the options available to every person and improve on the quality of that care. Nowhere on the Final Exit Network’s website could I find where there was any support for families.

The couple mentioned in this piece made a decision about how they wished to spend the end of their lives. Hospice did not help them make this decision and did not help them carry it out. Hospice helped them return to their family’s residence and provided them with physical and emotional support and ongoing bereavement care for the family.


Jennifer Hale, executive director, the Georgia Hospice and Palliative Care Organization

Hale's letter opens with a strong and harsh assessment of both Stephenson and the Final Exit Network.

It's too bad that her concluding words contain a glaring contradiction of her claim that hospice played no role in helping the couple in question "carry out" their death through starvation and dehydration.  When she says that hospice gave the couple "physical and emotional support," that means they facilitated the process - at least to the extent that they made the couple as comfortable as possible and as free from the more unpleasant sensations of starvation and dehydration as they could manage.  That is a lot of help.  Similarly, I have concerns that "ongoing bereavement care for the family" means helping everyone in the family feel OK with themselves for their own sanction and support of the couple's long suicide through starvation and dehydration.  That, too, is a lot of help.

Maybe Ms. Hale could take a second stab at clarifying what hospice is and is not.  Because this last couple of sentences didn't help me at all.  --Stephen Drake

Philadelphia: Young Girl Being Denied Transplant Because Her "Retardation" Doesn't Make Her "Worthy"

Recently, Diane Coleman wrote about new proposals to increase the pool of donor organs, and that have particularly disturbing ramifications in terms of the care and treatment of newly disabled individuals.  We already know that organ transplant teams are more than willing to obtain organs from individuals with long-term disabilities, as highlighted by the case of Ruben Navarro.  Even though a jury found no crime was committed in his death, the chaos and disregard for medical protocol associated with his final hours should embarrass any medical facility.

Navarro was a young man with cognitive disabilities.  At the time the story broke, I had one observation I shared on this blog that's very relevant in the immediate present:

Ruben Navarro would probably have been rejected out of hand as eligible for being a recipient if he had needed a transplant. It makes the circus of horrors accompanying the rush to make him a donor all the more appalling.

No one knows how many individuals with cognitive disabilities experience discrimination - even fatal discrimination - in the US medical system.  But every once in awhile, a disturbing example comes to light.  When we're lucky, it even comes to light in time for us to do something about it.

Rachel Cohen-Rottenberg was the first of several people on Facebook to call this to my attention.  Right now, the top article on wolfhirschhorn.org (a website devoted to families of individuals with Wolf-Hirschhorn syndrome) is titled Brick Walls.

The writer has a daughter, Amelia, with Wolf-Hirschhorn and the family has known for some time that Amilia's kidneys are failing and she will need a transplant.  They've had good medical support at Children's Hospital of Philadelphia (CHOP) up to this point. But things take a very bad and ugly turn at the meeting with the transplant team.  The story itself is long, and people should read it.  The excerpt below appears near the end of the article:

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”

I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

“And then who do I see?”

“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

They both get up and leave the room.

A couple more pieces of information are in order here.  First, the family plans on finding a living donor for Amelia.  They plan to have themselves tested for a tissue match and a number of people in their large family have also indicated willingness to be tested for compatibility. Also, although I wish I could say the doctor was breaking some kind of law in this instance, physicians are apparently given a lot of latitude when it comes to exercising anti-disability bigotry in the transplant arena.

So what can we do?

First, go and check out "Who deserves a kidney? CHOP says no kidney for Amelia" on the site titled "Kidneys and Eyes."  The woman who writes the blog has two children with disabilities who have both received kidney transplants. She provides several useful pieces of information in terms of taking some kind of action:

There's this link to a petition demanding that the transplant team at CHOP approve the kidney transplant that Amelia needs.

This same wonderful writer provided the following in regard to CHOP (link and excerpt from patient rights and contact info for CHOP):

CHOP PAtient’s Bill of Rights
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.

File a suggestion, complaint, or grievance by discussing with the clinic, unit, or department manager or other supervisory person, or by contacting The Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983), by e-mail at FamilyRelations@email.chop.edu, by fax at 267-426-6990, or by mail addressed to the Family Relations Office, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104.

PLEASE CIRCULATE WIDELY.  AT THIS TIME, DISABILITY ADVOCATES IN PHILADELPHIA COULD BE VERY HELPFUL IN PRESSURING THE HOSPITAL TO REVERSE COURSE.  --Stephen Drake

NDY President Diane Coleman's Letter to National Post re: Poll on Assisted Suicide

Last week, the National Post reported on a recent poll of Canadians in which 67% of the poll respondents indicated their support for legalized assisted suicide for people who are "terminally ill." 

NDY President Diane Coleman fired off a letter to the Post and it was published on Tuesday, January 6.  The link for the letters section is here.  Diane's letter is the first letter in the letter section labeled "Three votes against assisted suicide..."  Text of the letter below:

Tom Blackwell’s article reporting that 67% of Canadians poll in favor of assisted suicide is déjà vu all over again for readers in the United States. The superficial and often misleading poll questions on this topic produced similar statistics in a number of U.S. states over the years.

One superficial assumption is that there’s no meaningful distinction between suicide and assisted suicide — most people know that it could tip the scales if your doctor and family members agreed that it was time for you to go.

Another factor is that the phrase “physician-assisted suicide” implies that a trust-worthy doctor is the only assistant. However, the language of assisted suicide laws actually immunizes all potential suicide assistants from any type of liability, not just doctors.

And, finally, there’s a vague sense of comfort that safeguards can ensure that the process is voluntary. But even if the relatively flimsy protections leading up to the lethal prescription are assumed to be ironclad, once the lethal drugs are in ones home, the law does nothing to ensure that they are taken voluntarily.

All in all, a closer look at this complex issue raises so many doubts that only two of our 50 states have legalized the practice by ballot referendum, and no bill has made it through the scrutiny of a state legislature, even after 100 attempts.
Diane Coleman, president/CEO Not Dead Yet, Rochester, N.Y.