Futile Care – Who's for the Blood and Gore?

Today the New York Times has a piece about the dilemmas of futile care.

What is futile care?

Glad you asked.

Futile care is essentially the idea that for many patients, there comes a point where medical treatment is useless, because it will not improve their condition. On its face, this seems reasonable, except for at least two points. One, we had better be careful about what we define as futile care. Why? Because, increasingly, feeding and hydration are being classified as medical treatments, ergo, they can be judged as medically futile and therefore withdrawn. Two, futile care arguments slip very easily into the realm of doing what’s cost effective. How so? Well, if there is an expensive medical intervention (and almost all medical interventions for these patients are expensive) wouldn’t the treatment be better utilized on someone who has a much better chance of getting better?

The NYT piece shows how biased the media has become when reporting on end-of-life issues, because it goes out of its way to tell us how awful and horrific end-of-life interventions can be.

The piece makes a stab at balance, noting that not all doctors think futile care is the way to go, and also acknowledges that sometimes it is more loved ones’ denial of the obvious, if painful reality. That’s fair enough – as far as it goes.

But read the opening sentence:

Aggressive treatment at the end of life — frantic CPR for a brain-dead accident victim, inserting a feeding tube in a dying Alzheimer’s patient — has become a staple of the health care debate. Critics argue that vast resources are squandered on care that is obviously futile.

No exactly nuanced, and it sets an unfortunate tone, especially entertaining the notion that it’s OK to starve Alzheimer’s people to death.

It goes downhill from there. Soon we are in the grimly grotesque world of a twenty-first century Frankenstein:

The subject of the first essay was a 2-year-old boy, severely brain-damaged from a birth defect. He was dead — his heart had stopped. His doctors and nurses knew that no matter how hard they might try to resuscitate him, they would never succeed. But they tried anyway; aggressively jamming large bore needles into his chest, pounding on him, applying paddles to shock his heart. One nurse was so upset she almost vomited.

Medically, this is accurate, I suppose. But you could couch open-heart surgery, drilling into a patient’s brain to relieve bleeding or even stitching up a gaping wound in exactly the same way – many medical interventions are gory, but that doesn't mean we don't do them. If we didn't, we'd never perform transplant surgery, amputations that save lives, or reattaching a severed limb, all interventions that are very often successful and for which patients are very grateful.

Later, in discussing CPR, the Times again prefers the gory option:

It’s a violent procedure, Dr. Helft said, “very invasive and disturbing.” Medical personnel press on a person’s chest with such force that they break ribs. They stab large bore needles into the chest to administer fluids and drugs. They shock the heart with bursts of electricity.

Well, not exactly. CPR does not necessarily mean ribs get broken. It's possible, and sometimes it happens, but suggesting that it's always the case is bunk. Emphasizing the gore betrays where the writer’s sentiments lie.

Here’s a further quote about that same little boy:

Dr. Helft explained why. “In a sense what it does is, it says that we are doing this procedure, using this procedure on the boy to benefit the family,” he said. “We are using this boy as a means to an end, an end unrelated to his own well-being. You will hear clinicians say this all the time: ‘Even though the patient is already gone, we are treating the family now.’ There are lots of other ways the family can be treated.”

OK, I see - the boy’s wellbeing was to be dead. That’s not a cynical observation. If you read much of the medical literature you can’t get away from the perception among many that death is a form of wellbeing over living and suffering.

Just like for your pet dog.

Let me be clear: There is clearly a time when reality means all medical efforts should cease. However, the trick is to know when to desist - and therein lies the judgment of the medicos, who are very far from perfect in what they can prognose.

The way they see it, however, Doctor Power should prevail.

Let’s look at the second reported case, DeeDee, an elderly woman with advanced Alzheimer’s disease who was subjected to “aggressive” resuscitation efforts and survived:

DeeDee was saved. She’s still demented, of course, and cared for round the clock by dedicated attendants.

See? What a waste of time, effort, and money. We still have to care for this demented woman around the clock, such a waste of energy and money.

Money spent on a demented old lady could have been better spent on people who are in their right mind.

Frightening.

“Finishing Off” Children with Disabilities

There’s a tabloid journalist in Russia making waves about lethal solutions for newborns (and others) with disabilities. Journalist Aleksandr Nikonov wrote an incendiary piece in a popular Russian tabloid, (caution, content may be offensive) Speed-Info, entitled Finish It Off, So It Doesn't Suffer.

As I say quite often here, I’m not sure why so many are surprised and outraged. Nikonov’s intent is no different than what the rest of the pro-death crowd say, just slightly more uncivilized.

Clearly, Russian tabloid journalism is short on subtlety, as is the 700,000-an-issue Speed-Info, with its copious photo layouts of scantily clad women and other lowbrow schlock. In this regard, we could simply ignore Nikonov’s message. However, tabloid sensationalism influences public opinion just as any other form of publication does – perhaps even more so.

Let’s begin with Nikonov’s own words of the title. Newborns with disabilities are suffering; therefore they should be finished off. Also, these newborns are its - not baby boys or girls, or even newborn humans, they are nonhuman. Harsh? Yes, but exactly the same sentiment that many Western countries are swallowing. (The Netherlands routinely kills disabled newborns as well as the elderly and the infirm. Scotland is talking about assisted suicide for children. Dignitas in Switzerland will help do you in for a fee. Canada’s medical community increasingly calls for the legalization of assisted suicide. The pro-death crowd in the US isn’t happy that only several states have already legalized assisted killing – they want more).

Nikonov hasn't learned the Western trick of making killing much more acceptable when it's prettified. The pro-death crowd would recoil in horror at the description of finishing people off. Instead, they talk about euthanasia, aid in dying, dying with dignity - making the ugly beautiful. Most people don’t like ugly, but they do like beautiful. It’s simply a matter of lying often enough that the lie becomes desirable truth.

However, the pretty-talking pro-death crowd is really down with Nikonov, because any way you slice it, finishing off is the intent of assisted suicide and euthanasia, warm fuzzy terminology notwithstanding.

Here’s what Nikonov said in a Radio Free Liberty interview:

Parents, in particular parents, should be free to decide the fate of their own offspring. If you want to bring up a child with Down syndrome, you can do it. But if you don’t, you can euthanize him. Why is prenatal abortion legal and post-natal abortion is not?

Well, he’s got a point: If we feel free to allow and legalize the abortion of unborn children with Down syndrome and other “defects,” as we have done, then why not allow and legalize killing after birth?

Logically, there should be no difference. At least Nikonov is consistent – kill - sorry, finish off children with disabilities wherever you find them, unborn and born.

Lest we ignore Nikonov, remember that he’s saying exactly what others in highly elevated university endowed chairs at prestigious universities are saying. For one, Peter Singer has noted that:

In any case, the position taken here does not imply that it would be better that no people born with severe disabilities should survive; it implies only that the parents of such infants should be able to make this decision. (Practical Ethics, 1999, p. 189).

I think post-natal abortion is way too pretty.

For the sake of honesty and transparency, I’m with Nikonov’s approach.

Call it what it is: Finishing off children with disabilities for their own and everyone else’s good.

For Frances Inglis and Her Supporters, Murder is Merciful Love

Frances Inglis, a UK mother who attempted to kill her severely medically disabled son, and then slipped past nurses a second time to finally dispatch him, has been convicted of murder and sentenced to life in prison.

The comments on my previous post about Inglis are overwhelmingly sympathetic to her actions. Frightening.

I think we are in very dangerous waters when the pro-death lobby has twisted public opinion to where cold-blooded murder is viewed by many as an act of love and motherly concern.

I am not kidding, wish I were.

Here’s one person’s take:

I am disgusted with these selfish people who insist that all life should be maintained, no matter the cost to the person who is actually living with the injury/disease.

Oh, I get it. There comes a point when you are severely disabled beyond which you should not live.

Here’s another:

If you were Thomas Inglis, and you were living this way, how long would you like to do that. One year, five years, 20 years?

Reminds me of the doctor’s line in a Nazi propaganda film pushing euthanasia: “Would you, if you were a cripple, want to vegetate forever?”

How about this justification:

Yes, she sounds a bit mad. As you or I might be too, given a year and a half of the horror she had lived through.

Poor Frances, so tormented that, why, of course, murder was the obvious solution – ends Thomas’ “suffering” from his nonresponsive state, and ends Frances’ suffering of having to put up with him.

Sounds like a deal to me.

And one more excerpt from the comments to my previous post, which, I think, is the epitome of upside down thinking:

She needs our compassion, not this ugly political posturing. What exactly are the tenets of a civilized society, does anyone remember?

Ah, I get it. Compassion for a murderer so intent on killing her offspring that when she at first did not succeed, she persisted until she did.

Better still: It’s actually “civilized” to kill the medically vulnerable and defenseless and uncivilized to care for them instead.

With this kind of thinking, and I’ll wager it’s very widely shared, we are at the bottom of the slippery slope and teetering on the brink of descending into a bestial depravity where when people are suffering, different, a bother, or perhaps even if they just upset us, that they need to die.

This time it was Thomas in an unresponsive state.

Next time. . . well, fill in the blank.

The Burned Women: The Deliberate Manufacture of Disability

There are almost 700 million people in the world who have some form of disability. Disability comes in many forms and with a host of causes. Some causes are genetic; some are a result of disease or accident.

That should be enough.

But it isn’t, because in many parts of the world disability is actively and deliberately created.

Recently, a 2008 New York Times story about attacks on Pakistani women has resurfaced in several other contexts (warning: graphic images of disfigured women).

Some women are attacked because they have had the temerity to divorce their husbands (warning, graphic images of disfigured women); girls are attacked because they transgressed male-dominated notions that they should not get educated. Others are assaulted for no reason at all except that they are female.

As I reread the story, I wondered why we are so silent about the hundreds of thousands of women who are horribly disfigured by their husbands or other males with a cultural weapon of choice: acid.

Yes, acid.

The question of course, is why acid? Why is it almost always flung in women’s faces?

Three reasons, at least.

One, in many cultures, men matter way more than women, and the male sense of entitlement, including the entitlement to punish women, is reinforced by the rest of the society. Men are rarely held accountable for these horrific actions and generally they feel justified in committing these atrocities.

Two, disfiguring women’s faces is particularly cruel because in many cultures, people with disabilities are shunned, especially those who have very visible “defects.” What could be more vicious than deliberately creating visible defects like grotesquely maimed faces destroyed by acid? Missing ears. Gaping holes where noses or eyes used to be. Mottled skin literally melted into contorted masks of horror.

Three, in these same societies, women so destroyed are not only shunned because of their disfigurement, but their disabilities mean they will likely not be able to work to feed themselves and their families.

Their lives are shattered. They are deliberately manufactured outcasts.

Some are speaking out in some small way.

Many more of us need to do the same.

Speaking out Against the Pressure of Being Required to Die

Well, it didn’t take long in Britain.

It’s already a fact of life in the Netherlands.

Feeling that if you have a disability you should somehow feel guilty for not wanting to do yourself in, that is.

Good for Sue Garner-Jones. We need more people with disabilities like her to speak out, to join her and my friend Tony.

We, and they, need to speak out very, very loudly.

For 34 years, following an accident, Sue has been in a wheelchair, pretty much paralyzed from the neck down with only very limited use of her hands. She receives 24/7 care from her 72 year-old mother.

She’s done pretty well along the way. Sue has a PhD, is a part-time lecturer at Liverpool University, and helps out in her community by tutoring school children in English.

She’d had enough after reading about all the fawning press accounts of the assisted suicide of Daniel James. Dan, you’ll recall, was taken by his parents to Switzerland from England where the Swiss assisted suicide Nazis, Dignitas, were happy to help kill him.

Here’s part of what Sue said:

People make their own decisions about how to live their life. But there’s a lot of talk about bravery and courage for people who were opting out of living their lives. I didn’t like the inverse of that. To call this action ‘brave’, ‘courageous’ and ‘selfless’ implies that those of us who battle on are ‘cowardly’ and ‘selfish’, which is unfair and untrue.

Great point, Sue, but that’s what it’s soon coming to in the formerly glorious seat of Empire.

But it’s hardly news, unfortunately.

In the Netherlands, many elderly people carry identification or wear bracelets that read if I am hospitalized, do not euthanize me or I do not request assisted suicide. Not that it means much. There’s very strong evidence that each year in the Netherlands hundreds of people are snuffed out anyway, even if they have never talked about, considered, or requested assistance in dying.

In a nutshell, many people in the Netherlands feel the seeping pressure to get on with it and die – as a community service, of course. Now it's Britain's turn.

Have a disability? Choose "a loving, dignified, and easy death" – or else.

Can the US be far behind?

If you read this blog, you already know the answer.

Eugenic Researchers, Genetic Testing, and Eugenic Discrimination

Yesterday’s Washington Post ran a story that should give us great pause.

The piece reported on advances in genetic testing that make it easier to detect many more anomalies at earlier stages of pregnancy. I think we should be very aware that a primary aim of genetic testing is eugenic.

First, what the tests mean in the real world: Medical tests, including all genetic tests, are not perfect. 

At the level of the family, what this means is that for a percentage of those tested, the results will be wrong. That is, a percentage of terminations will be of children who actually do not have Down Syndrome, or any other genetic defect, for that matter.

Second, what the tests mean at a societal level: Genetic in-utero testing unambiguously seeks to separate the genetically normal from the genetically defective. As the tests become more sophisticated, more subtle genetic differences will become apparent.

That means, inevitably, that we will increasingly separate a larger and larger group of people into a variety of genetically defective categories. Furthermore, the genetically different will be increasingly segregated, in whatever way, from those who are genetically similar.

Genetic discrimination. Genetic segregation. For more pregnant mothers, destruction of their pregnancies based on genetic makeup, nothing more, nothing less.

It’s already happening.

Example: Genetic discrimination of Down Syndrome children. The vast majority of Down Syndrome pregnancies are terminated, exclusively and only because they are (a) genetically different, and (b) because that difference is overwhelmingly seen as negative and undesirable. Parents are heavily, and routinely, pressured to terminate the pregnancy. There’s very little evidence that the doom and gloom is balanced by other realistic, but not necessarily negative information. 

Who are the people making the case for genetic difference being negative, undesirable, and therefore worthy or termination?

Why, the medical professionals and genetic researchers of course.

Enter Arthur L. Beaudet, of Baylor's Department of Molecular and Human Genetics, who opined in the Post article that these tests are “ready for prime time:”

For people who want the best possible prenatal diagnosis and want the maximum information, this is the best option.

Here’s what we can be sure of: What Beaudet is saying is that these tests provide the most accurate test for rooting out genetic anomalies.

Because that’s exactly what they want to do – get rid of the genetically different.

Don’t believe me? Listen to the good Dr. Beaudet:

Some of these disorders are quite burdensome. They require lifelong nursing care. In some cases these children never walk, never talk, never feed themselves . . . It can have a major impact on the family. People say, 'I wish you had given me the opportunity to know ahead of time. It's really destroyed our lives.' That's why women want to know.

This is a nakedly eugenic position.

Not even a show of pretense.

If you are genetically different, then you are a burden. Your quality of life will be bad. Your family will have to deal with you, what a hassle. You will have destroyed your family’s lives by you, yourself, being alive.

The good doctor is, I’m sure a distinguished professional in his field. Here’s a list of some other people distinguished in their fields, who thought eugenics was just fine:

Helen Keller, Alfred Nobel, Margaret Sanger, Adolf Hitler, Alexander Graham Bell, Woodrow Wilson, H. G. Wells, Winston Churchill, George Bernard Shaw.

Just to name a few. 

Ah, the Brave New World. I can’t wait . . .

The Baroness Who Thinks People are Animals

For people who aren’t sure what all this “Culture of Death” talk means, let me share a little of what’s happening in Britain right now.

Meet Baroness Mary Warnock.

She’s a prominent British public figure who says things that sound quite outlandish. If you were a casual observer, there’s a good chance that you’d dismiss her as pretty nutty.

Big mistake.

Baroness W says what she means, and she means what she says. There’s a big chunk of the population, in Britain and elsewhere, who think she’s spot-on.

Here’s some background: Baroness W is a former headmistress, commission chair, and perfectly sane woman.

Her passion is undeniable.

Her ideas are dangerous.

She’s always had a pro-death outlook. Years ago, after initially coming out against euthanasia, she changed her mind, supposedly because she saw the benefit of euthanasia after the family doctor euthanized her husband.

Nice.

Let’s also remember that this is the same Lady Warnock who, a while back, made the case for parents paying for their infants’ care, including for life support equipment, if those infants were judged as having little to no chance of leading healthy lives.

Several weeks ago, Lady W was at it again.

Here are some gems reported in the Times of London:

"I'm absolutely, fully in agreement with the argument that if pain is insufferable, then someone should be given help to die, but I feel there's a wider argument that if somebody absolutely, desperately wants to die because they're a burden to their family, or the state, then I think they too should be allowed to die.

"Actually I've just written an article called 'A Duty to Die?' for a Norwegian periodical. I wrote it really suggesting that there's nothing wrong with feeling you ought to do so for the sake of others as well as yourself."

"I think that's the way the future will go, putting it rather brutally, you'd be licensing people to put others down."

Just to review, Lady Warnock believes the following groups should be candidates for assisted suicide or euthanasia, or to use her chilling term for being “put down:”

(a) people experiencing insufferable pain

(b) those who absolutely want to die because they’re a burden to their family or the state, and

(c) those who feel they ought to die for their sake and for the sake of others.

This is a very large group of people identified by sweeping, undefined, and deliberately vague criteria.

Watch out, Put-Them-Down-Mary might be after someone you know.

Disability as Death Sentence in Nepal

I’ve talked before about cultural aspects of disability.

Some cultures view disability as just another characteristic on the continuum of human diversity. Other cultures, unfortunately, view any form of disability as negative and something to be avoided.

I’ve also addressed the idea that for many people with disabilities, where they happen to live can often be the difference between getting all kinds of help and advocacy and other places where, exclusively because of their disability, they are ignored, oppressed, abused, and yes, even killed.

The grim list of horrors is almost endless.

When cultural prejudice and a hostile geographical location intersect, having a disability can be a death sentence.

Like in Nepal.

Nepalese with disabilities are below the bottom of the social pecking order. They are abused, ostracized, neglected, segregated.

I could try to tell you their story, but, instead, want you to listen to the story of Ramah, and others, whose existence literally depends on the kindness of strangers.

Deborah Strong works in Nepal. She lives in Katmandu. She moves among Nepal’s citizens in villages, towns, and deep in the jungle.

It was Deborah who, several years ago, saved Ramah from certain death, from a murder planned simply to rid the village of someone with a disability.

Disability in Nepal, out of sight, out of mind.

Let’s start to change that.

Words to Learn From: I Have Come to Live Before I Die

The guy in the photo with me is my dear friend Tony. Tony is terminally ill with Motor Neuron Disease. Nothing much moves anymore, except his face muscles and the muscles allowing him to breathe.

His mind is crystal clear. Sharp.

Tony has been in hospice for 6 years, outliving every other patient around him. He has to be fed, bathed, toileted, moved, dressed. He relies on others to assist him 24/7.

If ever there was a case for why we should allow euthanasia based on the “quality” of life, Tony should be euthanasia’s poster boy. But that would be a big mistake, because Tony made a decision way back right after he learned his diagnosis – that living was important, not dying.

While I was in South Africa recently, we spent some time talking about his condition and his thoughts. He is a resolute and realistic man. He’s decided what will happen when he can no longer breathe.

But that’s not yet. He is not, by any stretch, yearning for death.

That’s not all. Not the half of it. He has produced two very impressive DVDs educating people about his condition. He routinely teaches batches of medical students, nurses, and other support personnel about his condition from his personal point of view.

There is a steady stream of visitors, often bringing his favorite goodies.

He follows world affairs very closely. He likes to sit in his chair and have a cocktail or two. He is articulate. His jokes are funny, his humor dry, and, occasionally, quite dark.

But not sinister.

He’s writing an autobiography. He read me excerpts. It’s charming, funny, and embodies not a wisp of bitterness. I’ll bet he’ll finish it. He wants his book to be a testament to Tony the person, no holds barred. Or as he puts it,  “the good, the bad, and the ugly.”

He considers himself a fortunate man, all said and done.

If you ever want to see another side of someone with a severe disability, look at the photo.

This is not how the pro-euthanasia crowd wants things to be.

In a major piece in Johannesburg’s Star newspaper last June here’s how Tony described moving to hospice:

“I Have Come to Live Before I Die”

Take that, pro-euthanasia advocates. 

Not a Good Time to Have a Disability in South Africa

I know South Africa very well – I’m a South African. My father’s family arrived in South Africa generations before the US became an independent country.

Today, I weep for my homeland, because South Africa is drenched in African blood. If you can stomach it, it's not difficult to find photos of the unspeakable violence all over the web.

Long-simmering ethnic animosity has seen dozens of people beaten, stoned, burned, shot, and stabbed to death. Thousands are seriously injured. Tens of thousands more are displaced, fleeing their homes ahead of marauding gangs whose chief aim is murder, followed by the usual accoutrements of looting and rape.

Why?

Because the murderers are stoning, beating, burning, shooting, and stabbing people they see as different.

Here’s how it works: If you’re a South African African, no problem. Not a South African African? Watch out.

This horrific thuggery is being aimed at refugees who have fled other parts of Africa in the hopes of making a life for themselves in “the New South Africa” as its often fondly called. Now, they are paying a terrible, unjust price for that hope of a better life.

My birthplace, Johannesburg, has been scene of most of the carnage. Thousands are flocking to churches and police stations for protection.

As the bloodlust rises to fever pitch, the most vulnerable are among the first to succumb to rock, flame, gun, or machete—especially Africans with disabilities. They’re easy prey to satisfy that bloodlust of difference, you see.

Read on.

South Africa’s Mail and Guardian reported that:

A marquee tent had been set up at the police station for mothers and children, but the children were complaining of hunger and cold. At about 2pm, a team from the Methodist Church arrived with boxes of apples and loaves of sliced bread and almost sparked a stampede. 

Scores of blind Zimbabwean beggars who had been brutalised and robbed by the mobs were being pushed aside by the hungry crowds.

The Times reported what happened to an African with severe communication impairments:

One victim was a deaf mute who was attacked outside the Central Methodist Church in Johannesburg. Known only as “Tarro,” the young man suffered a gash to his forehead at the hands of a mob. 

Medical student Herbert Nedi tended to him and said the bewildered Tarro, who could only write his name and could not provide a surname, did not know what was happening around him.“

It was clear he did not have a clue what they [the mob] were talking about. He doesn’t understand what is going on,” said Nedi, as Tarro held a cloth to his head.

Make no mistake. There are, and will be, many others.

Unable to walk.

Unable to run.

Unable to see.

Unable to hear.

Unable to comprehend the deadly blow of a rock.

Unable to stop the body blow of a bullet.

Unable to douse the searing heat of being burned alive.

Unable to understand the swish of the machete.

 

Pray for South Africa. Pray more for South Africans with disabilities.

Surviving with a Disability: Location, Location, Location

I was struck by the stark contrast of two international disability stories that emerged late last week.

London’s Daily Telegraph reported the story of Lali, born with craniofacial duplication:

An Indian baby born with two faces is doing well one month after her birth, doctors have said. Lali was born with two noses, two pairs of lips and two pairs of eyes - but only two ears. And while she may seem like an oddity to some, her proud parents think she is simply a God reincarnated…

Her parents. . . said their little girl was "a gift from God". Excited villagers claim she is the reincarnation of the Indian God Ganesha and celebrated her arrival with clapping, cheering and offerings of gifts and money.

The story continues:

Doctors who delivered the baby said she appeared to be in good health, and is leading a normal life with no breathing difficulties. They were initially uncertain whether the baby would have normal functions but say so far she is "doing well" and eating from both of her two mouths. She also opens and shuts all four eyes at the same time.

The second story, in its English version, appeared at LifeSiteNews:

Amalé is four years old. Like many other children, he went to school for the first time on Thursday, February 12th, in Brasilia. A Kamiurá Indian from Mato Grosso, Amalé attracted attention from the rest of the children because he was the only child who was without a uniform and a backpack. But Amalé stands out from the rest for a much more troubling reason. The little Indian is actually a survivor of his own history. 

After being born, November 21, 2003 at 7 am, he was buried alive by his mother, Kanui. She was carrying out a ritual prescribed by the cultural norms of the Kamaiurás, which require that children of unwed mothers be buried alive. To seal the fate of Amalé his grandparents walked on top of the mound.

The report continues:

Nobody heard even a cry from the child. Two hours after the ceremony, in a gesture of defiance against the whole tribe, his aunt Kamiru set out to disinter the baby. She recalls that his eyes and nose were bleeding profusely and that he first began to cry only eight hours later. The older Indians believe that Amalé only escaped death because that day the earth of the pit was mixed with numerous leaves and sticks, which could have created a small air bubble . . . 
The motives of infanticide vary from tribe to tribe, as do the methods used to kill the little ones. In addition to the children of single mothers, handicapped and mentally retarded children are also condemned to death. . . . The rituals of execution consist in burying alive, choking, or hanging the babies. Generally it is the mother herself who must execute the child, although there may be cases in which she can be helped by the father.

So there we have it. In India, disability is viewed as a blessing, in Brazil, a fatal curse. Both instances target the children through anthropological and cultural lenses.

I’ll leave cultural perceptions of disability until another time. What’s important here is to note that while any society has its views about disability, it’s only happenstance in many places that makes the difference between living with a disability and being killed because of it.

Where are we, culturally, in the US and the West in terms of how we view people with disabilities? I think we straddle an ever-widening chasm: on one hand, people with disabilities are more vocal, included, and supported than ever before. On the other hand, we are increasingly silencing those with disabilities who can’t speak or defend themselves through assisted suicide and euthanasia.

We may, as a society, not choose to worship someone with a disability as a god, but, as a society, are we very far from primitive Brazilian tribes who kill newborns because they have a disability?

In many ways, I think not. Some of our finest “bioethicists,” for example, think it’s just dandy to do away with newborns (and others) with disabilities because they are judged to have lesser worth than those without disabilities.

How will we decide the future? Thumbs up, or thumbs down?