Monday, January 14, 2013

Their names were Marc and Eddy.

In Brussels on December 14th, two deaf men were euthanized. They were real people who were sick with spinal problems, heart issues, glaucoma. They were deaf and yes, becoming blind. Being real, their situation's complex. We should be concerned and talking about this-yes. But let's not turn them into simplified poster children. From the UK Telegraph, eight hours ago:  
Neighbours and friends in the village of Putte said that the twins had to overcome strong resistance from their elderly parents to their demands for a mercy killing.
The twins were going against the national grain here. This wasn't something supported by their family or many doctors. They had to fight for support for their decision: 
...their local hospital refused to end their lives by lethal injection because doctors there did not accept that the twins were suffering unbearable pain, the criteria for legal euthanasia under Belgian law.
"There is a law but that is clearly open to various interpretations. If any blind or deaf are allowed to euthanise, we are far from home. I do not think this was what the legislation meant by 'unbearable suffering'," doctors at the first hospital said.
Note the phrase 'far from home.' That can be interpreted as 'far away from what was intended.' This was not the point of the law, to euthanize deafblind people. So I'm wondering what else is going on? 
Eventually the two brothers found doctors at Brussels University Hospital in Jette who accepted their argument that they were unable to bear the thought of not being able to see each other again.
Marc and Eddy were signers and did not likely have bad images of deafblind people. Their brother certainly did not. As the Telegraph reports:
Dirk Verbessem, the older brother of Marc and Eddy, had defended the decision of his brothers to die.
"Many will wonder why my brothers have opted for euthanasia because there are plenty of deaf and blind that have a 'normal' life," he said. "But my brothers trudged from one disease to another. They were really worn out."
Whoa! Blind and Deaf are categorised here as normal. Two things are targeted by the third brother as the true cause of Marc and Eddy's wish for an ending: diseases and psychic trauma as a result of these diseases. In this light, the glaucoma and blindness looks slightly different: it looks like the last straw. The one that broke the proverbial camel's back. And I wonder if there's other things we don't know about.
Mr. Verbessem said his twin brothers were going blind with glaucoma and that Eddy had a deformed spine and had recently undergone heart surgery.
I agree with having the right to euthanasia. Do I agree with *this* euthanasia? No. Well, not yet. Personally, I'm concerned about the psychological state of Marc and Eddy at the time they made the decision. I also note they were in their 40's–when men typically have a period of stress and self-assessment known as the mid-life crisis. I know people who've dealt with worse pain and wanted life: but this isn't a competition and numbers are the wrong way, I think, to look at it. And so is 'these deaf men... found out they were becoming blind and wanted to die.' The ... hides a lot. But ... doesn't look good in the news. 
To me, their obsession with dying was significant. Here's what I wonder:
-What counseling support and treatment did Marc and Eddy have? 
-Was it in their primary language?
-How long a period did it last? 
-Were their doctors apprised and informed of it?
I do know that local organizations for blindness like Ligue Braille were "surprised at the case." I worry that these guys were going through depression which led to obsession–something I've seen myself–and well, we don't know. Even in the US, Deaf people often struggle accessing psychological care. And sometimes that care can not be satisfactory or helpful for those who need it because of cultural and linguistic differences that complicate communication. I think counselling should have been part of this process. I'm not seeing any discussion of that in any of the articles.
I see people are saying right now How terrible, what a poor decision! If only they knew it was OK to be deafblind they wouldn't have made that decision! I think the story is showing a lot more dimensions than that. I want to give Marc and Eddy credit for being aware, from their lives and community, that being deafblind is a different state of existence, and not bad. I feel they definitely had a mountain fall on them and could only handle so much. I wonder how much support they had dealing with it. The media is focusing on the deafness and blindness. There's so much more here. There's Marc and Eddy. Some of the articles I've seen haven't even mentioned their names.

Note: The Limping Chicken also discussed this issue. 


Nadya said...

I have genetic glaucoma. I know that everybody's case is different, but I will say this: you don't just go blind from it overnight. There are eyedrops that you can take. There are lots of surgeries: SLT, trabeculectomy, canaloplasty, trabectome, etc. There are researchers working on optic nerve regeneration. Glaucoma is serious, but it is also definitely treatable. So, I agree with you that the issue is more complicated than the media has really portrayed it to be. Thank you for writing this article.

Webmus said...

I'm a Belgian woman with Usher Syndrome, this is a disease with deafness or hard of hearing and Retinitis pigmentosa. People with Retinitis Pigmentosa can also become blind slowly. I know people with Usher syndrome who are completely deaf and almost blind, enjoying their life. With ups & downs, just like every one....

I have to say I also enjoy my life, I have friends, a job,... trying to have a normal life like everyone, but with some adaptions & support. Just letting you all know I don't have any reason for euthanasia yet, because I'm still going on very well. I'm a healthly person, unless my hearing impairment and tunnel vision. In Belgium are many people who are deaf or hard of hearing & vision impaired or (almost) blind, who are happy, enjoy their life with some support. How you go on with your deafblindness also depends of your strength, to think positive. Not everyone is happy with it, there are people who are sad or depressed after the diagnosis, but they can go on well with the possibilties of acces for them. Ok being deafblind is not easy, it can be hard, but It remains possible to enjoy your life, but on another way.

When I heard that these twin-brothers did euthanasia because they were deaf and going blind, my first reaction was being shocked. How can being deaf & becoming blind be a reason for euthanasia? But then I began to wonder what could happen to make such a decision? Thinking about myself: with the hearing and sight loss I NOW have, I don't have any reason to wanna die. But If I should become more diseases or impairments, this could be an option. Just don't wanna be deaf & blind and ending in a wheelchair with unbearable pain e.g. If I once have the choice between dying right now by euthanasia or suffering for many more years or decenna, then I choose the euthanasia option. I've read now that they had more problems next to deafblindness: heart problems, psychically prolems (communicate with others is very hard if you can't see or hear). They were suffering a lot right now on the age of 45 and the life could go on for decennia: Is there anyone who like to grow old this way? Deaf + blind + other diseases + pain and suffering? So I understand these boys for their decision and I hope they are happy with it, wherever they are...

I also hope this will not influence other people who heard they have a disease that makes them deafblind. All what you need is the courage to go on, and there are many people to support you: family, friends, other people with the same problems...

ninefingers said...

Webmus, thank you for this reply. It was so sincere and meaningful. I have to admit it made me tear up a little.