;In the face of the media, truth will never prevail. Truth will always be tucked in a faraway corner, while the most ‘sensible’, ‘convenient’ story will make the top headlines and people will believe whatever is flashed in neon signs than the underlying truth in black and white.
The twins from Belgium that were granted the right to be euthanized and succumbed to lethal injection on December 14 had a story to tell, but all the world saw was the reasoning behind their deaths as attributed to solely being Deaf and going blind. Actually, Eddie and Marc Verbessem had a much more complicated, indepth story to tell from the grave, but will anyone listen? Is the reason of going blind surely justifiable for their deaths, the world wants to know, but the media continues to carbon copy the first initial reports that they chose death over going blind, and THAT story continues to be copied over and over again.
Not here. Not on my blog. I will explain in summary what REALLY went on behind the hospital curtains, with the Verbessem twins and their doctors but leave you to read several articles for more indepth information. It’s just a shame that the real story isn’t making the circuits out there.
The first wave of reactions on the Verbessem twins’ deaths were varied. Some sighted people said they would have done the same thing, if they had lost their hearing and sight. Even Deaf folk would go as far as to say that if they were going blind and lost their vital sense, it’s curtain time on their lives. They would willingly give up fast – and say that the brothers were in the right to end their life just because they were going blind. Many Deafblind people were aghast, shocked, saddened over the loss of ‘one of their own’. and even some shared they felt that the world was having an unkind glimpse into the depressing darkness of the lives of Deafblind people and now the pity was a heavy mountain onto them instead of the world cheering for them and forging ahead with ideas and plans and policy for a better quality of life. Instead, the Verbeseem twins’ deaths cast a heavy shadow over us. Would we be encouraged to do the same or our lives compared to their isolating and depressing life? We had just started to break through the glass ceiling which is the notion that 1. Helen Keller is the ONLY leader for the Deafblind in past, present and future, and 2. Deafblind people aren’t able to the extremes.
Truth is, the part about the depression and the isolation of the Deafblind twins is real. I have seen it myself. I have lived it myself. I have travelled to the most accessible urban city for Deafblind people in the world and see that the Nirvana of the Deafblind has not been reached; I have worked in Nigeria and Nepal – two of the world’s worst places for a Deafblind person to even be alive in and the cloud of isolation and depression is just so heavy. Technology equipment that would morph Deafblind people to a higher level of independent living is just too expensive (thanks, Consumerism) and not many local or state level governments would dole out funds to cover the costs, thus Deafblind people live without that necessary means to survive society and choose the dark safety of their homes instead of venturing out with their government-covered technology that will stay a dream unless the government decides that Deafblind people are actually first class citizens, not second class. There are a very, very few independent skills training centres in the world for Deafblind people – most notably the Canadian Helen Keller Centre in Toronto, Canada; Helen Keller National Centre in Long Island, New York, United States, and a few small service centres in Europe. Most hearing-blind services provide basic training in Braille, Cane and specialized computer lessons but usually don’t go beyond teaching Tactile with Sign Language or Home/Independent Living skills (cooking, cleaning, daily chores, how to do errands with a sighted guide and Deafblind community immersion). There needs to be more of those latter, so that Deafblind people would be more likely to adapt to the ever-changing society and keep up with the times. Only if we were viewed as very able individuals with only loss of hearing and sight, not a piece of flesh that can be moved around like a puppet, a mind no one else thinks is worth pouring knowledge and the latest news into, a misfit that isn’t fit for any society.
There are many, many successful Deafblind leaders around the world, you would be AMAZED at the number of individuals who have overcome so many barriers and challenges to achieve system change, to spread inspiration, to educate society and the Deafblind themselves of their abilities and not the lack of, and write books, establish organizations, have a career that is just like any other sighted person given the Deafblind person is given the tools needed. I wonder if the Deafblind Verbessem twins know of all the above – the education that was available, the Deafblind community in Belgium around them, the tools that were out there for them to keenly acquire so that their fears of going blind would be soothed with their own amazement and comfort? We will not really know, unless they have written a book, a journal or spoken with someone who can verify that they know of this, or didn’t.
But really, let’s get to the point. Whether they knew or didn’t know about what was actually available to them once they went blind is kind of moot now. Yes, they were anguished about going blind, but the real story was hidden from us and we were led through a sea of emotions and believing to be what was printed before our eyes (and our fingers, to those Braille readers in respect). Deafblind people believed that the brothers chose this way out because they were going blind, sighted people believed that as well but with the notion that it must be so terrible to go blind.
But Marc and Eddie chose the right to die because one of them had a respiratory problem that had him sleeping upright (oh that’s not comfortable! I had a heartburn problem for a week and had to sleep upright and it drove me mad!) and the other had spinal cord damage and could not walk in ease (I have sciatica and it drove me even madder if I couldn’t walk with grace and just riddled in pain)… so there is actually a somber, revealing story behind the brothers’ decision to end their life. Dying because of their imminent blindness was SENSATIONALIZED, but now that the true story has made it out there, will that be popular as well or lost in the mainstream of many overlapping stories and drifted off to nonexistentalism?
What the Deafblind community of the world can do is rise up, unite, EDUCATE the world of our abilities, FIGHT for our right to a better quality of life, CHANGE laws, society rules and our mindset about how we should live. The world needs to stop pitying us, spoonfeeding us, patting us on the head and whispering behind our backs that our live is destined to be a big nothing because oh dear, we can’t hear or see (nothing or partially, it depends on who you know in the Deafblind community)
We need to throw out that outdated theory that the brothers died solely because they were going blind, and go ahead with sharing the true facts of the story.
I respect their wish to die, may they rest in peace.
However, for the love of the Deafblind still living, please don’t see this as an opportunity to start a TREND in suicides or euthanizations of Deafblind babies, children and adults. We need to stand up strong and make our lives better by fighting for it.
Now I will share the links below and I’ll add more as I am fed more and more revealing stories about Marc and Eddie.
*I identify myself as a Deafblind person, because I am part of a worldwide Deafblind community. If people want to know specifically how I am blind, I have Usher Syndrome and am completely blind in one eye, and slowly losing sight in the left enough for me to see a circle that can expose faces or small areas. One doesn’t have to be completely blind to be indentified as a Deafblind person – they can be legally, partially or completely blind and Deaf. However, it is up to the person with partial or legal blindness to continue saying they are Deaf, and not Deafblind. A complicated blog for another time.
The Deaf Capital – op/ed
Feel free to send me any more articles with links in the comments below.