Over the weekend, news came out of Belgium of a grim and bizarre new “twist” in that Country’s euthanasia practice. According to reports, two 45-year-old twins were killed by lethal injection per their request (AKA “euthanized”). They were both deaf and it’s said they were both gradually losing their vision.
From ABC News:
Two deaf twin brothers in Belgium were euthanized by their doctor after realizing they were going blind and would be unable to see each other ever again, their physician says.
The 45-year-old men, whose names have not been made public, were legally put to death by lethal injection at the Brussels University Hospital in Jette, on Dec. 14.
The men, who were born deaf, had a cup of coffee and said goodbye to other family members before walking into hospital room together to die, their doctor told Belgian television station RTL.
“They were very happy. It was a relief to see the end of their suffering,” said Dr. David Dufour.
“They had a cup of coffee in the hall. It went well and a rich conversation. Then the separation from their parents and brother was very serene and beautiful,” he said. “At the last there was a little wave of their hands and then they were gone,”
I used the ABC report for an important reason; reporter Russell Goldman looks to be the only reporter who has correctly stated that “suffering” – not pain – is an important criterion for “eligibility” for euthanasia, although he does err in implying that it’s “unique” to see non-terminally ill people qualify for euthanasia in Belgium:
The brothers are unique in that their illness was not terminal. Belgian law, however, allows doctors to euthanize “suffering” patients who are both mentally sound, over 18 and want to die.
Right now, there’s conflicting information coming out in pieces in various news articles. I fully expect to revisit this as (I hope) individuals and organizations in the deaf, blind, and deaf-blind communities react.
There’s a pretty strong response from deaf-blind advocate, speaker and blogger “Coco,” who is pretty clear that this was not only a bad thing for the two men who were killed, but for other deaf, blind and deaf-blind people. She writes a blog titled “Tactile The World” and her latest post is here:
I have not blogged in a while, life took its course. However, this topic is tragically urgent, something has to be addressed and discussed in the worldwide Deafblind community.
Two twins, both Deaf men, from Putte, Belgium (30 miles from Brussels) won the legal right to be euthanized (put to death legally by Belgian doctors) after citing their unbearable burden of going blind.
The Bangkok Post reported this and it became widespread, and then a French Belgian newspaper L’Avenir.net made their rounds about this story. Just now the Telegraph has written a more detailed article.
The twins, both shoemakers, had an unidentified eye disease that would take their sight in a few years (Usher Syndrome???) and at 45 years old, they requested the agreement of Belgian doctors despite not being diagnosed with a terminal illness or a physical disease. They were approved because it was “an unbearable suffering”….
She goes on to talk about response:
I wonder if the inevitable outcome of this tragedy would mean that more and more Deafblind, and other disabled people who don’t have a terminal illness or a physical disease, would follow suit and opt for ‘mercy killing’ and euthanasia because they have this conviction that they are, in theory, dying as a person when they think that the most vital sense is diminishing? Would this lead to an unnecessary ‘self-massacre’ of Deafblind people who, in their depressed state, think they aren’t able?
I am curious what Feviado, and the Belgian French/Flemish Deafblind community is going to do about this?
My strong suggestion is for those Db in Belgium to take a stand on this, denounce the euthanasia of Deafblind people, talk to newspapers and television about how Deafblind are able to do things granted Belgian government provides access and funding for Deafblind support services.
I agree with Coco – the Deaf-blind organization in Belgium should speak out on this. In fact, I think it would be a big mistake for organizations and individuals outside of Belgium not to speak out about this double-killing. Otherwise, the discussion will be dominated by Belgian euthanasia apologists, euthanasia advocates of all stripes, and bioethicists talking out the “problem” of “extreme” cases. And then everyone will forget – until the next and more extreme killing comes along.
Please visit and read the entire original blog – “Belgian Deafblind Twins Euthanized!” and read the comments, which so far are in agreement with the points she’s made.
What would Helen Keller do?
Oh, she was already deaf and blind since infancy and knew, all those years ago, that she could have a good life. Her parents were not poor. She grew up to be a Socialist and activist for labor and peace. Howard Zinn wrote about her as a Socialist. She gave speeches. I heard one on the radio. (That apparently did not put to rest the ugly phrase “deaf and dumb” that still persists in media and our society today.) Helen Keller’s history has been whitewashed to the stereotype of disabled as courageous victim, helped by her teacher, Mrs. Sullivan – viz the U.S. postage stamp, the play and film “The Miracle Worker”. A website by/of women and our achievements omits her politics.
I can’t speak for people in Belgium.
What are we, the disabled, worth anywhere or here? The story sparks the fears of the ablebodied and urges us to considering “suffering” as a ticket to die. Will “they” help us suffer (more)?
I am very sad about this. I am hard of hearing, and explored becoming a teacher of deaf students at one time. What the healthy and fairly young twins needed was love and support. It would be normal to experience depression after receiving the diagnosis. However, an ethical doctor would realize this and offer to refer them to therapists and home health aids, not offer to kill them. And what is wrong with the parents and brother who just quietly said so long to them and watched them walk off to their deaths? They should have been crying and begging them not to go, and offering their love to them.
They were adults, not children. Their family could not stand in their way.
And you being hard of hearing =/= being deafblind. I’d wager that most able-bodied people could cope just fine with being hard of hearing, but deafblindness is an entirely different story. Let’s not go around telling others what they should be capable of dealing with with no personal experience to back up our assertions.
I never said that being hard of hearing is the same as being deaf and blind. Maybe you should follow your own advice as far as, “telling others what they should be capable of dealing with with no personal experience to back up our assertions.”
You’re all heart.
Oh, and if you bothered reading you’d know that they had numerous illnesses that already factored heavily in their decision to euthanize themselves. Those weren’t just two healthy people who happened to be deaf and going blind.
We *did* know that. And there’s more than one post here regarding the twins. Here’s the thing – on the one hand their “choice” is defended on the basis of competence and autonomy. But the decision to euthanize them at their request is defended on the basis of compassion and paternalism. Paternalism because only a doctor can make sure the killing is painless and free of complications. There are *lots* of non-disabled and physically healthy people who want to end their lives. Unless they’re talked out of it, they’ll make attempts to kill themselves. Most fail – and may or may not try again.
Proponents of assisted suicide and euthanasia constantly avoid answering the question of why old, ill and disabled people “deserve” help to kill themselves, but that society must try to prevent to suicides of young, healthy, nondisabled people. Unless we give assistance to *everyone* it isn’t about autonomy – it’s bigotry.
Ms. Aronson’s comment, above, struck a chord with me that is reverberating still. She states:
“What are we, the disabled, worth anywhere or here? The story sparks the fears of the ablebodied and urges us to considering “suffering” as a ticket to die. Will “they” help us suffer (more)?”
As the cost of healthcare increases, I believe the pressure upon us, the disabled, to Go Away will increase as well. “They” will continue to tell us how our lives have been “negatively impacted” by our disabilities. And we will continue to fight and to live our lives with gusto. If suffering is the key here, then *implied* suffering will be the measuring stick used to judge me as a person with multiple disabilities? Because I take medication for chronic pain, will some doctor whose job it is to save the insurance companies money *libel* me as “suffering” and suggest my “euthanasia” because my pain will grow worse over time?
I’m still reeling from the knowledge that *oncoming* blindness can be sanctioned as positive criteria for so-called “euthanasia.”
I am MORE that my “suffering!” And I am *worth* more than my pain!
Thank you, Kayla Rigney.
(Note to techies: My ability to comment would be helped by an edit function, easier to review and catch my errors; my main disabling illness, CFS/ME has cognitive “stuff”… And I’m never “the only one”.)
I had wanted to go on, in the original comment, but good sense limited me, to explain what I meant by my wondering if the medical workers and general (ignorant) society would continue to make us suffer more than our disabilities by continuing to put obstacles in our way? Some of these obstacles are to our getting decent/good medical care, psychological pressure to have us decide to end care and die; curb-cuts/ramps into buildings, accessible toilets; affordable housing that’s wheelchair accessible, some of which goes under enforcement of existing laws, such as the ADA, Americans With Disabilities Act.
I want to give one example, while I remember. In NYC, the Mayor Bloomberg is hostile to poor people and to people with disabilities, and old people (although, at last media coverage, his own mother was 99 years old and his administration has cut Meals-on-Wheels food delivery programs to homebound ill/elders, delivering fewer hot meals and requiring people to have microwave ovens so the frozen meals left for weekend can be reheated, instead of continued delivery hot meals daily on the weekend…, closing senior centers, as well as day care centers for preschool children)…His Taxi and Limousine Commission has approved a new taxi cab for the fleet of public “yellow” cabs that is NOT wheelchair accessible. The people who want to be able to ride in a wheelchair accessible taxi cab went to court, sued to be able to hail an accessible cab on the street, like in London, Boston, Los Angeles, to name a few cities that have them. In lower courts, the disabled cab riders won the law suit. I was elated. In my rare trips out, I would be able to go into a taxi cab without having to transfer from my wheelchair and haul my weak self into a cab; many many others can not transfer. My wheelchair gets bounced around in the trunk. I worry. My husband, also older, has to lift it or ask driver to help get the wheelchair in and out of the taxi cab trunk. I only do it on the ride away and we stroll back home, spouse pushing my wheelchair.
Recently, the highest court in NY State, reversed the lower courts’ decisions and said that public accomodation (sic) under the ADA did not extend to public taxi cabs = mayor Bloomberg wins, disabled wheelchair users who can’t use mass transit (like me), or NYC paratransit (like me) are screwed, legally. And the rest of the public has choice of yellow cab.
One of the “games” our society plays, is to trivialize disability on the one hand, e.g. my own two main ones: CFS/ME and allergic asthma, every asthma attack is potentially life threatening – and
on the other hand, encourage “assisted suicide” -e.g. Kevorkian’s #35 was a nurse who had CFS and was “afraid of becoming a burden on her family”, had two small children, was depressed, “if she got worse” (and Stephen Drake has noted that her husband was physically abusive). Re asthma: I remember when the NYC Commissioner of Education, Richard Green, died of an asthma attack one May spring pollen evening,circa 1990, his death was blamed on him, Commissioner Green, for not going to the hospital soon enough. He died with his head on the air conditioner – asthma can “turn on a dime”. NYC has been planting flowering trees for decades, instead of the old kinds: maples, oak because “the flowering trees have smaller leaves which won’t clog sewer drains on the street”, unfortunately they flower twice a year. NYC either has few regulations on new building and renovation materials, including no regs on drills to have dust catchers, so children and adults with asthma suffer the environmental pollution as NYC undergoes massive renovation of buildings, cheaper than tearing them down. People can pay rent while living in dust, smells – noticed and suffered first by people with lung diseases, and landlords have continuity of money flow.
You mention that you have pain. You could write a whole blog entry on how doctors fear patient addiction when giving treatment for pain, and/or gov’t penalty, so it’s often inadequate to control the pain.
There are people who are disabled in nursing homes because there’s no wheelchair accessible apartments for them to move into. Nursing homes are a big industry, the whole system of insurance is biased toward the industry, rather than independence. Since the supply of new disabled/old is plentiful (people don’t have money or desire to get their disabled relatives attendant care at home,gov’t money goes to the incarceration industry, nursing homes- that’s the bias), there’s not much incentive to keeping folks “inside” alive….
I can easily see it from the other direction (and for what it’s worth, yes, I have a disability myself). In a country and culture in which there exists a ‘right to die,’ it represents the ultimate choice. This was not done TO these two men; they decided it for themselves. Who am I to say their suffering doesn’t ‘qualify?’ There are many health conditions I would personally not like to have to see through to the end, if I had the choice. Whether or not this is one of them for me doesn’t matter; nor does it matter that other DB people are leading happy, successful, worthwhile lives. Clearly this was it for them, and THEY made THEIR choice.
First of all “right to die” is an area which euthanasia proponents have been trying to broaden – with some success. The “right to die” has traditionally dealt with the right to refuse life-extending or sustaining medical treatments. Those are established rights in this country.
Our society judges the vast majority of suicidal wishes as unjustified. That’s why, in the vast majority of cases, there is no talk of honoring the “choice” of someone who wants to kill him or herself. There is no justification – outside of ablist bigotry – to provide “assistance” in committing suicide that is denied all other suicidal people.
But in Belgium, that assistance is not denied other people. Which was my point; they made a choice that is equally open to other members of their society. If they had been offered that assistance in a society like the US, where it is not offered to others – that would have been ablist bigotry.
You need to do more research. Assistance is offered – so far – *only* to people “suffering” from some condition which has no cure or prospect of improvement – or words very much like that, given translation difficulties. That means, that *assistance* is only offered to old, ill and disabled people. Young, healthy, nondisabled people are seen as valuable and their suicides as tragedies to prevent.
Perfect reply Stephen. I’d like to add the (my) word, “disabilophobia” – the fear of disability and the fear and hatred of people with disabilities is a factor, as well.
You hit the nail on the head with that one Stephen. I am also deeply disturbed that they are now trying to pass laws through that would allow them to euthinize children with the parents’ consent. That is sick.
I meant euthanize.
All this fear mongering about how this will coerce disabled people killing themselves is quite honestly, stupid, without merit and self-serving. Because of this unfounded fear that disabled people will be sent to death panels, people such this blogger and the idiots commenting above me are in full opposition of a person’s right to make a decision to continue or end their own life. Should we also oppose abortion because women can be coerced into having one for all the wrong reasons? Just because there is a potential for a basic right to be abused it doesn’t mean that it shouldn’t be made available at all. Yes, deafblind people can lead productive and fulfilling lives. And some do, but others don’t. Portraying severe disabilities as minor inconveniences you can get around is as troubling as treating it like a form of eternal damnation. There are people who can’t cope, and feel like failures because they haven’t met the level of success achieved by Helen Keller or some other person famous for surmounting the limitations of their disabilities.
The reactions towards this story by disability groups reveal their own ignorance and selfishness. You don’t know that these men weren’t made aware of all the options for deafblind people. You don’t even realize that the fact that the had to jump through hoops to have their request met for years meant that it was not a decision that was made on the fly. You don’t understand that they had other illnesses/disabilities that would have made life even harder for them than for you average deafblind person. You also don’t know that they used a unique form of sign language understandable only amongst themselves and their closest relatives. So certain forms of communication that can only be available to deafblind individuals (like textile signing) would not have been possible to learn if they never learned standardized sign language.
The selfishness of disability rights advocates is as equally alarming as the lack of empathy from able-bodied people. It seems people in general simply can’t wrap their minds around the concept of people living for themselves and not for others. I am all for disabled individuals being afforded equal rights, and the dignity of being treated like a normal human being but let’s not kid ourselves here and pretend that disabilities are like skin color and sexual orientation. Whether you want to admit it or not a disability does diminish your quality of life, and depending on the disability and its degree the quality of life can be merely tolerable at best. Being deaf AND blind, two disabilities that are challenges on their own require utmost mental strength, a great support system and luck in being able to access specialized equipment/training to make life as a deafblind person with some degree of independence even mildly enjoyable. It is not a challenge that everyone is cut out to overcome, especially since not ever disabled person’s circumstance is ideal for it. There is a great deal of privilege in expecting everyone to just deal with it if it happens to them. And most of that attitude (as examplified in the comments above me) come from people who don’t know what it’s like to live in a world of total darkness and silence yet feel compelled to actively stand in the way of these brothers’ choice because they think every situation is exactly like their own. Absolutely ignorant and mind boggling.
Well, “G,” whoever you are, it appears that you are the only ignorant one commenting here. And at least we have the guts the use our names. What the hell makes YOU such an expert on the twins, or any other disability rights issue?
Please check your spelling and grammar. And “examplified” isn’t even a word. No one ever said, “just deal with it,” when referring to disabilities.
If you cannot understand why the twins should have been offered compassion, empathy, and support, instead of being euthanized, I’m afraid your own ability to empathize is nonexistent.
Throwing in the red herring argument about abortion was pathetic, as were the ad hominem attacks.