Belgian Deafblind Twins Euthanized!

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”….

Makes me wonder if the doctors consulted with the only Flemish Deafblind organization, “Feviado”, or if the twins were aware that there is another side to the Deafblind life – where there are accessible technologies, tactile lessons, Feviado….? Were the twins properly consulted?

This horrifies me. Yes, many Deaf people with degenerating retinal diseases become clinically depressed, withdraw themselves from society, find no solace in becoming blind and sometimes consider suicide. Deaf communities are mostly unintentionally ignorant, making their clubs, organizations and gatherings unaccessible to Deafblind people, thus making Deaf -turned- Deafblind people even more depressed and isolated.

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 gave a lecture in Ghent, Belgium, the first weekend of December (13 days before the men died) and I strongly encouraged the Belgian Deafblind community to come together and build a strong foundation, start more gatherings, become role models for those Deafblind who think it’s the end of the world, and to BELIEVE in their abilities.

Now is the time.

As we mourn the loss of the Deafblind twins, we must take action to save lives and change them for the better, and instill HOPE for a better quality life for thousands and thousands of Deafblind around the world.

There is one English version of the story in the Bangkok Post and the Telegraph,  and the French version in the L’Avenir.

The Telegraph

http://www.telegraph.co.uk/news/worldnews/europe/belgium/9798778/Belgian-identical-twins-in-unique-mercy-killing.html

The Bangkok Post:

http://www.bangkokpost.com/breakingnews/330499/twins-allowed-to-commit-suicide

The L’Avenir

http://www.lavenir.net/article/detail.aspx?articleid=DMF20130112_00254599

Please post comments below, what you think and suggestions for the Belgian Deafblind Community as I am sure they will be reading the comments.

In sorrow and hope,

Coco

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30 Responses to Belgian Deafblind Twins Euthanized!

  1. Dr. John Bosco Conama says:

    Maartje,

    A good blog…however I do think it is an issue for the Deaf community and society in general as well. From where I stand here, I can see there is a danger of the slippery slope towards a situation known as a liberal eugenics. Liberal eugenics emphasises the individual right to decide what s/he wants to do with their bodies and the persistent emphasis on this individual right obscures or masks the agenda of liberal eugenics agenda – absolving the society of its responsibilities of accommodating the human diversity.

    Granted, the Deaf community may not be as accommodating for Deaf-blind people but I feel it is beside the point in this affair.

    JBC

  2. Dr. John Bosco Conama says:

    Excuse me — I was alerted to this error — this blog should be addressed to Coco….not M?aartje – apologise all around…… my mistake….

  3. Joanna delargy says:

    My sincere thoughts to the twin men! How limited they have knew that other DB people can live in this world with help from the guides and mobility sticks, everyday living after the training in the place! When I mentioned to Bjarne, my husband, that the twin men died from euthanasia, he exclaimed “oh no! what stupid doctors allowed them to die just because they were afraid of going blind! What about me! They should have see me how I live in my DB world!” Yes He hated the thought of going blind but he lives for now with CI to benefit from the loss of his eyesight in later on!
    Joanna

  4. Hi Coco,

    I read your article.

    I am Arnaud Balard, a Deaf usher artist. I live in Belgium during 10 years.

    I read also the comment of Martje, and of course I am agree. Behind the liberty of choice by the citizens, society mask his own responsabilty of taking part of all of his citizens.

    It’s the same when a deaf baby born and is very early screening.After nothing is ready to help parents with the deaf baby….and society let them “choosing” te best for their baby.
    We all know that hearing parents couldn’t decide because information is not clear.

    “Mask the responsability of society”…it’s perfectly said. Thanks Martje.

    Arnaud.

  5. Tina H says:

    This makes me sick. What kind of a weak, pathetic society do we live in that we can’t even lend a supportive hand to those with special challenges, but instead kill them? How stupid are we? Any one of us at anytime, can be disabled and God forbid you get some hairbrained doctor that agrees you should be killed. These men didn’t elect to kill themselves. They were mentally ill, as well as deaf, so they weren’t in their right mind, don’t believe the lies. The day we start killing people because they aren’t perfect is the day you better say hello to the next Hitler run society. You who support euthanasia are stupid sheep. Led to the slaughter.

  6. Ed K. says:

    CoCo, I agree with you completely. Were these men never exposed to a deaf-blind community? They were not terminally ill, they were simply depressed and with the proper encouragement they could have adapted and recovered from their depression. This is really a horrible story on so many levels!

    • deafprofile says:

      Considering most DB people I know- these twins were sharing a journey. They had more than enough to give it a fighting chance. I do not see the grounds that made this legally possible. The medical code is to do no harm in whatever they practice. Not only did the Drs agree to end the twins lives on a feeble bias, they also agreed to harm the DB community by stating that being DB is classified as unbearable suffering. This example will spread misconceptons in the minds of others. The medical code was not excercised fully, that much is plain.

  7. sflmac says:

    Yes I agreed, The Belgian parliament legalized euthanasia in late September 2002 but I see Belgian euthanasia law is a broad definition. DB Belgians need to speak up to clarification on euthanasia laws therefore Belgian parliament should revise this laws.

  8. Owl says:

    You are a horrible person. You deserve to be deafblind and see what it’s like. They didn’t ask to be born. They can’t be forced to live in this prison called life if they don’t want to. It’s SO cruel. If they need doctors to help die because they can’t do it themselves obviously, it’s their right, if a doctor is willing to do it. Only stupid Middle-Eastern Christian Hocus Pocus Christian beliefs think that death is “bad”. There’s nothing evil about death.

    • Spasticus Autisticus says:

      Coco IS Deafblind – I met her when she came to speak (sign) to other Deafblind people here in Australia. Most people reading this blog are also Deafblind. Deafblindness is tough, but it doesn’t have to be a prison.

      Read the post again. Depression amongst Deaf people losing their sight. “Deaf communities are mostly unintentionally ignorant, making their clubs, organizations and gatherings unaccessible to Deafblind people”. The existence of assistive technology, tactile sign language and a Belgian organisation for Deafblind people. The need for Deafblind services. Questioning if the twins (and their doctors) knew what was available.

      Too often, people get help to DIE with dignity, rather than help to LIVE with dignity. Too often, people don’t even know that life with dignity is possible.

    • sflmac says:

      Coco did not mention about moral issues. She talks about a support group for DB or going to blind in that country. You should read that blog again carefully. You stupid!

    • Owl, no, you ARE a horrible person. Coco simply pointed out that this was not *terminal* disease. It may be a horrible disease to some, but certainly not qualified enough to terminate one’s livelhood. The living conditions by these twins were caused by their family – they obviously ostracized them from reaching out to other DB or Deaf people in Belgium. Why do you think they live and work together? It was reported that they only knew rudimentary sign language with each other & their immediate family? Why? There ARE official sign languages in Belgium, France, Germany and so on. As far as I am concerned, this was an act of murder by their parents.

      R-

      • Carlita says:

        You know absolutely nothing about their families and how they impacted their decision, so fuck off with your judgments. Those were two grown men who fully understood the weight of their actions and were likely persuaded to seek alternatives to euthanasia, but they were clearly determined to not have to live with one more disability compounding the numerous other ailments they had. You’re horrible for infantilizing them and assuming you know better what’s good for two people whose situation you know nothing about than they do.

  9. Owl says:

    I’m so angry at your blog entry. Those twins died as a willingful adult decision. Respect the choice that they made. People like you force their choices on others and make others suffer. People like you built this horrible society where we are forced to live for countless years and suffer. Signed. A lonely, miserable, handicapped person who wishes he was dead but doesn’t qualify for euthanasia. Hates the breeders who gave him birth and didn’t think it’s cruel to give birth. Hates people against death for their own selfish little pleasure or because of brain-washed morals.

    • I’m sorry you’re in so much pain, Owl. You don’t have to be lonely, at least–there are a number of online communities for a range of disabilities. You can find people like you who know what you’re going through.

  10. Pingback: Belgium: “Double Euthanasia” of Deaf Twins Losing Vision and Reactions from a Deaf-Blind Blogger | Not Dead Yet

  11. Thank you for this post. I was so sad when I read about this, especially because these two men had each other and could have been a support to each other as they adapted to their new disability. I also immediately thought of one of my best friends, who is Deafblind (in addition to other disabilities), and thought, “Now here is one more hurdle she’ll have to deal with when people who believe that being Deafblind makes life worthless do not treat her with the respect and value she (and all of us) deserve.”

  12. Karyn says:

    I was so saddened to read about the decision these two men came too. I am not Belgian, but I have multiple progressive disabilities. When I began losing my eyesight (already deaf) there was a lot of heartache but I connected with a wonderful gal (http://pawpower4me.blogspot.com/) who was going deaf herself (already blind) There was no local help for me, just the support of this wonderful DB gal who changed my life for the better. I so wish these men had such a person to talk to before making this decision. It saddens me that they did not.
    I get that this is a personal decision where it is legal, but I wonder if this would have been their decision had they had a true glimpse into the life of a DB person.

  13. Bill T. says:

    Quotes from King Lear on bearing the affliction of blindness:

    Henceforth I’ll bear
    Affliction till it do cry out itself,
    “Enough, enough,” and die. (4.6.75)

    Men must endure
    Their going hence, even as their coming hither:
    Ripeness is all. (5.2.9)

  14. Hi Coco

    I had already posted about the twins’ euthanasia on the Toujours Vivant-Not Dead Yet facebook page. TV-NDY is a (bilingual French-English) canadian offshoot of Not Dead Yet in the United States and is a project of the Council of Canadians with Disabilities. I would like to ask permission to link to this blog entry, and translate it into French to post on our facebook page. Please let me know if this would be OK with you. You can email me at amy.hasbrouck@tv-ndy.ca. Thanks very much in advance.

  15. Although I generally come down on the side of an individual’s right to choose assisted suicide, this case has a distinct difference, which I am afraid the general public will fail to see. It shows just how pervasive and entrenched the prejudices and misunformation about blindness runs. When the existence of a condition which requires the learning of new ways of doing things is comparable to having an incurable or intolerably physically painful disease, we should all take note of just how far there is to go in our efforts to re educate the general public — which is, after all, the major source of blindness and (I suspect) deafness. Are we going to allow parents to euthenize blind, deaf or deafblind children because of their misguided but strongly held beliefs about the futility of our lives? This is a wake-up call. If non-physically based pain is justification for assisted suicide, how soon will people struggling with depression ask for the same assistance?

  16. Deafblind Finn says:

    It is rather absurd some English-speaking person gets to determine for a European which is correct path to take. We don’t always share the same view of life as you do. Not everyone hold onto the agony of holding onto Judo-Christian values like you do. In fact, it is rather quite liberating to have control over one’s life and not to let anyone else tell each others what to do. The brothers chose what to do with their lives.

    Yes, it is sad that they ended their lives. However, everyone have different paths to take.

    • Your response is quite astonishing. It was their choice, no question about it. It was such a misguided one. Why? Because the deaf brothers were ostracized by their immediate family – why do you think they lived together and worked together? Think hard. So much for their noble choice. It was not a pure choice, it was a misguided choice.

      R-

      • Carlita says:

        There we go again with your condescension and infantilization. How do you know it was a misguided choice? Did you personally speak to them? Were you there when they made arrangements with their doctors? You know nothing about them, so shut up.

  17. Robert T. Sirvage says:

    They chose death because of life as engineered by human society is too unbearable for deafblind… It is like telling people living in forced labor camp, “you get to choose your life path, including ending your life, it’s okay.. “. It beg the question about our social responsibility to make sure that it is design to give fair chance in races of life for all. It cannot stop at individual’s wishes and intitatives because after all, we will bequeath it over to countless upcoming generations whose currently have no saying in any decision or choices we are making today…

    Today I wept for myself and the humanity

  18. AVM says:

    http://www.telegraph.co.uk/news/worldnews/europe/belgium/9801251/Euthanasia-twins-had-nothing-to-live-for.html

    A follow-up article says the twins had glaucoma and “could only communicate with special sign language understood by each other and their immediate family.” Maybe if they had been taught more than home sign they would’ve felt they had more options. Truly heartbreaking.

  19. DAW says:

    As is characteristic of the corporate media, only part of the story was released by several outlets, presumably in order to sensationalize the issue. However, I did find the following from one outlet which might help put things into perspective and presents another side on this issue, regardless of whatever your views on the issue might be:

    ‘…..This story has sparked heated debate and discussion online, as there are many who disagree with the decision of Marc and Eddy Verbessem. However, there are further details about the condition of the Verbessem twins that has been overlooked by many media outlets. A translation of information from their doctor, Dr. David Dufour, to De Standard provides additional insight.

    Dr. Dufour notes that the twins not only were deaf and going blind, but one had respiratory problems that meant he could only sleep upright. The other had spinal cord damage and could barely walk. Doctors were unable to improve their condition, and many medications could not be used because of their fragile eyesight. It had come to the point where they barely ate, and they had been begging for months to be allowed to die….’

  20. jayant says:

    Homo sapiens sapiens! do we deserve this biological classification. My father 80% gerontological deaf-blind at 89 is wiry & strong willed. I call him Jolly. My mother died before 6 months. The life goes on for him. Physically fit deaf-blind seeking euthanasia is sad comment on liberal accommodation of European Society, often destined at individual’s carnal gratification. Recently The Indian Supreme court ruled exactly the opposite. Never destroy that you can’t create! LIFE…

  21. Amy Tussing says:

    I was saddened to read this article. I work at the Virginia School for the Deaf and Blind as an intervener for students who are deaf-blind. We are fortunate to have some services and resources provided for our students. (There are still many barriers, and it is not a perfect world–but at least we try to provide the best access possible). It is apparent that these healthy men did not have enough support from their community when they chose this path and made this heart wrenching decision to be put under euthanasia. I do agree that a stand must be made, and Coco, you have been doing such a wonderful job of being such an advocate–educating people worldwide that being deaf-blind does not make you incapable or inferior. I am sorry that these men may have felt so hopeless like this. Perhaps in the near future, we may shed better light upon these tragedies and make a difference.

  22. Lawyer says:

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