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 Bangkok Post:
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,