Vera Just Needs a Ramp - Nothing Fancy

Late last week the Washington Post ran a story about the plight of people with disabilities in Russia.

Here’s the context:

Vera Samykina is an A student in all subjects who just completed ninth grade, a significant marker in Russian education . . . Samykina, 17, is determined to finish high school in two years and then pursue a university degree in English. She has never been inside a regular classroom, however. Most of her education occurs in her cramped Moscow apartment. Samykina has cerebral palsy, and until she was 15, tutors came to her house three times a week for a couple of hours to instruct her in her various subjects. For the past two years, she has been taught over the Internet by specialists in each subject.

Unfortunately, I’ve read these stories hundreds of times. Someone with a disability who has to fight hefty odds just to do things that the rest of us take for granted.

And the problems for people with disabilities, even in such a relatively developed country like Russia, are still quite elementary: lack of access, exclusion from school, treated differently because of their disability, etc.

The piece explains that even simple access issues are ignored, such as wheelchair ramps. Vera’s family has to physically drag her wheel chair up the 3 flights of stairs to their apartment. They have been unsuccessful in getting authorities to build a simple ramp.

Makes me want to grab a few 2 by 4s, saw, hammer, and nails, and head over to Moscow and take care of business.

Perhaps it’s time for a disability organization equivalent of Habitat for Humanity, building access and physically supportive structures for people with disabilities.

Offers, anyone?

Dangerously Stupid Professional Behavior

This is not an entry I wanted to write.

Gabriel’s dead, and nothing anyone can say or do will change that.

He didn’t need to die, and I don’t think it’s too much of a stretch to say that he died because of his disability.

He also died because so-called “professionals” engaged in egregiously stupid behavior.

As Canada’s Gazette reported this morning, 9 year-old Gabriel was autistic. Garden variety, it seems, with outbursts of inappropriate or loud behavior, or as the report noted, “He could be difficult to handle and easily agitated.” But not violent.

Gabriel had a classroom outburst last April the 17^th. He got loud, and apparently didn’t comply with his teachers’ warnings to desist.

Nothing unusual there.

BUT, folks, here’s where the usualness of a child with autism engaging in autistic behavior took a dark turn:

When Gabriel continued to behave inappropriately, one teacher took him to the corner of the classroom and rolled him tightly in a weighted blanket.

An accepted intervention in Canada, apparently. With the heavy blanket wrapping him tight, and with only his feet exposed, Gabriel was suffocated to death.

I’m sorry, am I missing something? A weighted blanket?

The report goes on to inform readers that, yes, folks, a weighted blanket is an effective intervention for children with autism.

Don’t believe it, not for a second.

Just read the sanctimonious responses of the apparatchiks justifying the use of this barbaric intervention:

When used under the guidance of an occupational therapist, weighted blankets can be calming for autistic children, said Kathleen Provost, executive director of the Autism Society of Canada.

"They have a therapeutic use and can be relaxing," she said.

Many autistic children respond positively to sensory stimulation like touch, massage and weighted blankets.

Occupational therapists have found sensory stimulation is soothing to autistic kids and sometimes produces better results than medication.

Although teachers at Marie Rivier had received training and guidelines from occupational therapists about how to use weighted blankets, the rules were not followed the day Gabriel died, the coroner's report said.

Forgive my British heritage showing: Absolute balderdash.

The whole rationale for this violence involves so much quackery that I don’t know where to begin.

One: Any physical restraint is, by definition, not therapeutic – it’s a safety measure. It should be done very rarely, and then only under extraordinarily controlled conditions. I can’t think of any way that tightly wrapping and covering an agitated child has any legitimacy whatsoever.

Two: If the Autism Society of Canada sees this as an acceptable intervention, they should rename themselves the Crackpot Autism Society of Canada. Immediately.

Three: The sensory stimulation angle: it’s much beloved by physical and occupational therapists but is absolutely unsupported by empirical evidence. Acting professionally on this idea is like flapping one’s arms and believing that at some point you’ll be able to fly.

Four: Perhaps the scariest part of the report is the solemn observation made by officials that this intervention is OK as long as implementation rules are followed.

Here’s why Gabriel died: Because incompetent teachers, therapists, and administrators were sucked into a half-baked and completely unsupported intervention masquerading as state-of-the-art professional practice in dealing with children with autism.

Gabriel would have been better off, and alive, had he and his family avoided the “highly qualified” professional version of the Keystone Cops.

When Disability is a Death Sentence - Literally

In the most accurate sense of what disability means, skin color is not often an issue that jumps out at us from the news media. While we still live, unfortunately, in a world where skin color can often lead to prejudice, oppression, and even abuse, these evils are rarely provoked because of "skin color disability."

However, there is at least one instance where skin color does mean disability in the medical sense: Albinism. People with albinism inherit a genetic disorder characterized by the presence of little, if any, melanin and other skin pigmentation in their skin. They are especially susceptible to severe skin damage; most often skin cancer from exposure to the sun. Many have characteristic vision problems.

A medical disability, no question.

However, albinism is often also a difficult social disability in societies where physical appearance can mean the difference between being included or excluded based on a person’s physical characteristics.

Such is the case in Africa and many other developing countries, where people with albinism are seen, depending on who you are talking to, as either a curse or a blessing. Either way, Africans with albinism lose.

Yesterdays New York Times carried a heartbreaking story from Tanzania documenting the increased murder of Tanzanians with albinism because their body parts are prized for witchcraft potions.

Disability as death sentence.

Literally.

Difficult enough that you live in a part of the world where your life expectancy is pitifully short (even by African standards) because there’s no money for sunscreen lotion (to say nothing of no education on how to manage the condition).

Difficult enough that your very visible medical condition marks you not as a human being, but often as the ingredient of some allegedly magic brew.

Difficult enough that you are an economic prize – but only after you have been mutilated or killed for your precious body parts.

Hats off to the Tanzanian Government, which has acknowledged the problem. They’ve taken some very aggressive steps to combat this horror – police protection, and the appointment of a person with albinism to the national government, for example.

The Tanzanians could go much further, though. 

How about the Tanzanian Government continues its good-faith efforts by signing the newly ratified UN Convention on the Rights of People with Disabilities? This ground-breaking international human rights agreement was meant to address exactly this kind of disregard for human dignity.

Let's hope it does so.

This sad and horrific story, at the very least, reminds us that we obviously have much work to do wherever disability prejudice is found.

Disability Dust-Up in Beijing

Well, well, well.

A day or two ago, London’s Times reported that official, but curious, Chinese attitudes towards people with disabilities have surfaced in the run-up to this summer’s Olympics, and, perhaps more unfortunately, for the World Paralympics also scheduled for Beijing in September.

It turns out that the official Olympic guide for both events, “Skills for helping the disabled,” distributed to 100,000 Chinese volunteers, contains a curious mix of plain old prejudice and plain old ignorance.

Let’s take the prejudice first. The Times reported that the Guide notes that:

"Some physically disabled are isolated, unsocial, and introspective. They can be stubborn and controlling; they may be sensitive and struggle with trust issues. Sometimes they are overly protective of themselves, especially if called “crippled” or “paralysed” "

People with disabilities are also a “special group” with “unique personalities and ways of thinking.”

Well, where to start? Watch out!! They’re different!! They’re separate from those of us without disabilities!! Be careful!! Caution!! Caution!! Run away!! Run away!!

Great PR message, don’t you think?

Of course, as we all know, those without disabilities are never isolated, unsocial, and introspective, and don’t have, thank goodness, unique personalities and ways of thinking.

Phew! Glad we got that straight.

Other observations are just plain ignorant. How about:

“They show no differences in sensation, reaction, memorisation and thinking mechanism from other people, but they might have unusual personalities because of disfigurement and disability.”

Wrong again. Some people with disabilities do, indeed, have differences from the norm in terms of sensation, memorization, and cognitive skill. Just exactly what an “unusual” personality is, and how you get it because you have a “disfigurement” or a “disability” is beyond me.

But hey, there’s hope!!! The Guide opines this little gem:

“Disabled people can be mentally healthy.”

Nah!! You sure?? Who knew?

All is not lost, however, The Guide also takes a stab at some quasi-accurate statements, such as:

"When you make eye contact, do not fuss or show unusual curiosity. Never stare at their disfigurement. A patronising or condescending attitude will be easily sensed, even for a brain-damaged patient."

Don’t ask me—about the brain-damaged part, I mean.

This in a country with about 83 million people with some form of disability.

To be fair, the report also acknowledges that while the Guide is spectacularly clumsy, the effort to recognize people with disabilities is a major step forward for the Chinese. Also, on the legal front, there's some progress, as Chinadaily.com reported last month.

OK. They better work hard—they’ve got a very long way to go.

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.

Well Deserved Celebration in the UN General Assembly

Monday’s celebration at the UN was all that it should have been. As I noted last week, we gathered to celebrate the adoption into force of the Convention of the Rights of Persons with Disabilities (CRPD).

The General Assembly was alive with as diverse a group of people as you’re ever likely to see: Not only were they diverse in terms of their ethnicity, gender, national affiliation, political stripe, and dress. They also steered wheelchairs and wielded white canes. There were silent (but often highly animated) sign-language conversations. Personal caregivers hovered when needed, but slipped quietly out of sight when they weren’t. The documents table groaned under a mountain of books and handouts in Braille.

Promptly at 1.15, Akiko Ito, Chief of the Secretariat of the Convention on the Rights of Persons with Disabilities, called the event to order.

Highlights included the address of UN Secretary-General Ban Ki-Moon and that of UN Deputy High Commissioner for Human Rights, Ms. Kyung-wha Kang.

Other messages were delivered by H.R.H. Prince Ra’ad Bin Zeid (Jordan), Ms. Vivian Fernández de Torríjos, (First Lady, Panama), and Ms. Sue Van der Merwe, (Deputy Minister, Foreign Affairs, South Africa).

Other high-level officials from Mexico, Hungary, Bangladesh, Spain, as well as several from international disability organizations, also participated.

An exciting, energizing day.

Now it’s time to roll up our sleeves and to turn CRPD from an international agreement into and international reality-–in every one of the 192 countries that call the UN home.

UN Takes on Disability Worldwide

After expending enormous amounts of energy and time (since 1982), there will be a lot of backslapping and celebration at the United Nations this coming Monday.

And for good reason:

In a two-hour ceremony to be headlined by UN Secretary General Ban-Ki Moon, the UN will celebrate the formal adoption of the Convention on the Rights of Persons with Disabilities.

A big deal? You bet.

Here’s why. The Convention is regarded as the first new human rights treaty of this century, and is the definitive international document protecting the rights of people with disabilities around the world – all 650 million of them.

Remember, we in the developed world often assume that the rights of people with disabilities are protected. That’s true – but often only to a point, as I’ve pointed out here many times.

However, in most places in the world, people with disabilities are denied even the most basic human rights of survival, nourishment, care, education, and a host of other things that we take for granted.

Perhaps a few facts will help:

• Eighty per cent of persons with disabilities live in developing countries
  
• 20 per cent of the world's poorest people have some kind of disability, and tend to be regarded in their own communities as the most disadvantaged
  
• Women and girls with disabilities are particularly vulnerable to abuse
  
• Ninety per cent of children with disabilities in developing countries do not attend school
  
• The global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities
  
• For every child killed in warfare, three are injured and acquire a permanent form of disability
  
• Persons with disabilities are more likely to be victims of violence or rape and less likely to obtain police intervention, legal protection, or preventive care.
  

I think, then, that Secretary General Moon is right when he notes that: 

“It is a historic moment in our quest for realization of the universal human rights for all persons, creating a fully inclusive society for all.”

Added my colleague Akiko Ito, Chief of the Secretariat of the Convention on the Rights of Persons with Disabilities and the UN Focal Point on Disability:

“It had been argued that persons with disabilities were covered by existing human rights treaties, but the reality was very different. Persons with disabilities have routinely suffered discrimination in the job market, in schools and in receiving public services.  This Convention will make sure that these people will no longer be ignored.”

Signatory countries to the convention pledge to enact their own disability laws and measures to improve disability rights while simultaneously beginning to eliminate discriminatory legislation, customs, and other practices that negatively impact their citizens with disabilities.

I’ll be in the General Assembly audience to add my congratulations.

People Magazine’s Spin on Our Current Dr. Death

You know you’ve reached celebrity status when you get a spread in People Magazine. You really have to work at getting page time if you’re not a behaviorally challenged starlet or in the midst of a celebrity divorce or marriage.

Enter Dr. Hootan Roozrokh. Remember him? He was the subject of my Doctor Power commentary on April 7^th. The good doctor needed organs, but Ruben Navarro just wouldn’t die so that Roozkrokh could get them. So Roozrokh did his energetic best to help Ruben along by repeatedly pumping him full of morphine and Ativan.

It took eight hours before Ruben “frothing at the mouth and shivering” (as a witness nurse told police) finally succumbed.

Now, here’s the part that concerns me about the People piece.

First, the title: Did a Doctor Speed a Patient’s Death?

As if there’s a mystery here.

No mystery at all, in my opinion. Every report on this case unequivocally points to the fact that Dr. Roozrokh repeatedly pumped Ruben full of fatal doses of drugs after Ruben kept breathing without a ventilator. What other conclusion could there be than that Dr. Roozkroh was speeding death? He certainly wasn’t waiting for it to occur naturally, and he sure as heck wasn’t trying to prolong Ruben’s life.

Second, the red “grabber box” above the People headline reads “Organ Donation.” The piece spends a lot of time handwringing that what happened to Ruben might translate into fewer people wanting to donate their organs.

Well, duh.

Let’s see: You want to donate your organs at some point but you’re afraid that some overenthusiastic transplant harvester won’t have the patience to wait for you to actually be dead. Or Dr. Harvester might actually expend amazing amounts of energy just to “help you along.” Afraid sounds reasonable to me.

Anyone who still thinks organ donation is always such a great idea needs to read Wesley Smith’s Culture of Death. It’s enough to set the organ donation idea back a hundred years. Perhaps it should.

Predictably, People soft-pedaled the real issue here:

Ruben was killed by a medical doctor because he would be more use dead than alive. Ruben was killed because he couldn’t defend himself or his rights as a human being. Ruben was killed because his mother was pressured, repeatedly, to permit organ harvesting.

That’s where we are, folks.

Have a severe disability? Unable to assert your rights? Don’t worry, Doctor Power can help.

The medical harvesters await.

The Forgotten German Holocaust Against People with Disabiities

It’s about time.

Reuters reported a little while ago that the town of Brandenburg, Germany, was to open a center commemorating the 9,000 or so people with disabilities murdered there just before and during the first few years of WWII.

When most of us think of the Holocaust, we recall ghastly black and white footage of emaciated corpses at Belsen, Birkenau, and Auschwitz and the anguished cry of “We must never forget.”

Rightly so.

But we have forgotten the dirty little secret of six other names: Brandenburg, Sonnerstein, Bernburg, Hadamar, Grafeneck, Hartheim.

You see, the Holocaust, as most people understand it, wouldn’t have taken the form it did had it not been for these locales.

I’ll bet you probably haven’t heard of these six places. Please remember them, always. They are the names of six institutions that housed a wide array of people with some form of disability – from those with severe and profound disabilities to those who had fairly minor medical conditions such as epilepsy. These places of social charity were hijacked by Nazi thugs and turned from havens of comfort and safety to death chambers.

The death program even had a name. Aktion T4, Hitler called it.

First major challenge: How to kill these people?

They tried a number of ways. Shooting patients in the back of the head (too messy). Tying a bunch of patients together and blowing them up with dynamite (way too messy). Poisoning (too slow). Starvation (way too slow).

What to do?

Why, gas, of course. No mess. Easier to disguise as something legitimate.

How about gassing disguised as showering? Sound familiar?

We’ll never know how many died, but we can account for about 70,000 deaths from recovered records. I’d bet there were many thousands more.

So now you know where the gas chambers of Dachau, Majdanek, and Buchenwald came from. Some of the unsavory characters that worked the chambers in the institutions graduated to more impressive death-making in the concentration camps.

In Aktion T4, disability was a death sentence. Later, in the concentration camps, it was being Jewish, or being gay, or being a gypsy.

Same tune, different words.

The whole story is here at Useless Eaters.

Check it out, it’ll help you remember those six not-concentration-camps-but-formerly-caring-institutional names.

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?

Doctor Power

At a recent international conference, I happened to be seated next to one of the presenters shortly after his erudite talk. His talk presented a scholarly and highly nuanced analysis and decision framework based on his understanding of the relevant philosophical and ethical literatures around death and dying. What was most intriguing for me was the part of his framework identifying who should be making these end-of life decisions.

Let's just say that the word doctor appeared much more often than words like patient, family, next of kin, spouse, or parent.

I engaged this distinguished ethicist and philosopher about his clear conclusion that, in most of his presented stages of decision-making, the doctor held full sway. I raised the concern of “doctor power” in light of how euthanasia in the Netherlands (and many other places, I’m sure) is often recommended (and carried out) by doctors without the permission of the patient -- or anyone else, for that matter.

Let’s just say he squirmed a little, and insisted that something got lost in the translation (he delivered his presentation in Italian, I heard the translated English version).

I don’t think so.

Let me be clear: Many physicians are a blessing to their patients, as they should be. However, only the truly naïve will believe that there are no doctors for whom euthanasia is an accepted, justifiable, and ethical practice.

In this day and age where the medical profession pretty much sees the “do no harm” part of the Hippocratic Oath as a quaint throw-back to a bygone era, and where, increasingly, medical decisions are economic decisions above all else, is it unreasonable to suppose that doctors everywhere, including in the US, sometimes act on their conviction that euthanasia is permissible without anyone’s permission?

Well, no. 

Doctor Power is here to stay. Remember Dr. Hootan Roozrokh?

No? Well, here’s what the Los Angeles Times story reported a little more than a year ago:

SAN LUIS OBISPO -- No one in the courtroom Wednesday suggested that Ruben Navarro could have avoided death for long.

But whether the severely retarded, comatose 25-year-old was nudged into it by an  impatient transplant surgeon is at the core of a legal proceeding unprecedented in the  United States.

Dr. Hootan Roozrokh, 34, has been charged with three felonies in Navarro's 2006 death. His case is being watched intently by medical professionals and ethicists across the country who fear that a conviction will discourage prospective organ donors and their families. . . .

At issue was whether Roozrokh, a San Francisco specialist on leave from Kaiser Permanente, improperly administered massive doses of morphine and Ativan, an antianxiety drug, in order to speed Navarro's death.

Doctor Power. Pure and simple.

Roozroh decided. Ruben died.

Ruben had been pumped so full of morphine and Ativan that when he finally succumbed, his organs were useless for transplantation.

Want to read about Hospital Power? Check out Annie’s story. I’ll have more to say about Annie later.

Maybe it’s time to find out how really well you know your doctor.

Couldn’t hurt to check……….

 

It’s Terri’s Day

Dear Terri,

Like most of the world, I met you on my TV screen.

You appeared, silent, wide-eyed, smiling, moving, and living. But I didn’t see you as much as I wanted to, because you were often lost in a jumble of breaking news items, pundits, and politicians. Lots of them.

I kept looking for you.

I kept looking for you because in the entire hubbub, you were what really mattered. Your severe disability didn’t matter, your humanness did. Whether you were supposed to be doing this or that didn’t really matter to me either, your being alive did.

While I was looking for you, I saw other things.

I saw your mom and dad, broken-hearted, desperate, resolute, teaching us what it really means to have hope. Their hope wasn’t found in making your disability go away, it wasn’t even in fighting the many ideological and political battles that threatened to overwhelm them.

Their hope was in loving and caring for you, as good parents will always try to do.

I saw your sister Suzanne. More in the background than your mom and dad, but always, always there. Concerned, devastated, but stalwart, never deserting you or the rest of her family.

I watched your brother, Bobby. Talking to anyone who would listen, reaching out to whoever wished to be supportive. An unassuming man, so very thoughtful, so very kind. I watched as Bobby taught us how to fight the good fight. He fearlessly defended you and all the good that comes from caring deeply for the least among us.

Again, I looked, but now I couldn’t see you on my TV screen any more.

You were gone from us. They had starved and dehydrated you to death.

You had been banished from the loving touch of mom and dad, from Bobby and Suzanne’s hugs.

You died before your time because some people thought you were too disabled to live, or, if you could have talked to us, that you would have told us that you didn’t want to live.

Not so.

You didn’t die because you wanted to.

You didn’t die because your family wanted you to go.

You died because the culture of death decreed that execution could be a loving act; that hubris grants the power to decide who lives and dies.

It is three years today since you succumbed to the mortal wounds inflicted by your enemies.

After these three years I looked again. You are everywhere. You help us soldier on.

There are many others like you. We will fight to protect them.

There are many families like yours. We will gather to support them.

There are many broken hearts. We will lovingly bind them.

There are many other tragic stories. We commit to telling them.

There are many adversaries. We commit to persuading them.

You are gone from our midst, but not our hearts -- not from our thoughts. Not from our hands. Not from our energy. Not from our determination.

Not from our smiles and not from our laughter.

Why We Must Always Remember Terri Schiavo

Three years ago, at 9.05 a.m., March 31st, 2005, Terri Schiavo was forced to succumb to the culture of death.

Perhaps one of the most disturbing aspects of this culture of death is its proponents' stomach-turning sanctimoniousness -- that death is good. Death is so good, in fact, that they'll obligate you to die of starvation and thirst. They'll deny you food and water because it's in your best interests. They, by golly, know what your best interests are.

That's why we need to remember Terri Schiavo -- as a polite way of thumbing our collective noses at the pious agents of death masquerading as paragons of light and love. There's nothing at all loving, or even decent, about deliberately allowing someone, whoever they are, and in whatever condition they may or may not be, to die of thirst.

Just think about that for a minute -- almost everywhere, deliberately allowing an animal to die of thirst and hunger would be considered cruelty -- as it should be. (Imagine what PETA would do!). But for Terri, and thousands like her, the playing field was different.

But alone, politely thumbing our noses isn't enough. Unless we remember Terri and her death, the playing field will continue to increasingly tilt against people with disabilities.

We must do more than remember -- we must get more involved.

There are many ways of speaking out. Speak out by helping us.

We could use your help here at the ISDB. Give us a call. I know Bobby Schindler at the Terri Schindler Schiavo Foundation could use your help. Give him a call. There's so much more we could do if we could rely on more hands, energy, and resources.

Think about it. It's a good way to remember Terri. 

Don't forget that Terri's Day is next Monday, March 31.

Don't forget. 

In remembering lies the seed for action and change.

David Cameron wants to be the next prime minister of the United Kingdom, so it’s tricky to judge whether his latest pronouncement Monday in London’s Daily Mail about people with disabilities is a political move or whether he really believes that people with disabilities, in his words, are defective.

Here’s what he said: Generally my approach is I want to improve the process of dealing with the genetic defects and diseases that cause so much suffering…When you have been for genetic counselling and had the answer it could be this or that it could be that, the idea of medical science advancing is not without its attractions.

At last, a new euphemism for getting rid of so-called imperfect people: improving the process of dealing with genetic defects, something which Cameron sees as an advance of medical science.

Two questions seem relevant to me.

First, why would Cameron go the defective route when his son, Ivan, has severe cerebral palsy and suffers from seizures? Ivan’s CP isn’t genetic, and was probably caused by any number of factors before or during birth. So, is Cameron making a distinction between genetic defects, which he thinks need to be “improved,” via attractive medical science advancement, and Ivan’s condition, which is not? Or, even worse, is Cameron implying that Ivan shouldn’t have been born?

Second, I think Cameron is throwing around the word defective too easily. Defective to whom? Many people Cameron would consider defective are, in other cultures, considered precious. Who decides the norms of defectiveness? Trying to reach a consensus on what is and is not a defect holds the potential for making distinctions I’d rather not consider. What other forms of defect might we invent to go along with people with disabilities? The Nazis considered Jews defective, as they did people with disabilities, including those, like Ivan, with CP and seizures. Might we, sometime in the future, consider brown eyes defective? Blond hair? Females?

Of course, we are far down the road of eliminating people with disabilities. We seem to have learned very little from the past.

Eugenics is alive and well in a country that not too many decades ago helped end the same idea and subsequent genocidal behavior that the loyal leader of the opposition now seems to support.