Born Deaf, Going Blind, Choosing to Die

Marc and Eddy Verbessem were born deaf.  When the two brothers learned they were going blind, they chose to end their life at the age of 45.  A doctor assisted them.  The story can be found in more detail here:

Marc and Eddy Verbessem, Deaf Belgian Twins, Euthanized After Starting to Turn Blind

Deaf Belgium Twins Euthanized

Deaf Twins' Brother Speaks Out

The two brothers lived in Belgium, one of three countries which legalizes euthanasia. According to the news sources, the brothers communicated with "home signs" which could only be understood by each other and their close family members.  The doctor is quoted as saying the two brothers had a "rich conversation" before the lethal injection took place.

It took the brothers nearly two years to have their request to die granted through the courts.

The twins lived together in their own place and had jobs as cobblers. In the Deaf Capital Blog, John D. Walker shares more details about their other physical conditions in his post, The Belgium Twins, Enthunasia and the Myth.  I can't presume to gauge their "suffering," which is a criteria for euthanisia.  Looking back on my life, there were several times during my teen years when I thought the suffering was too great at times and I had thoughts of wanting to get away from this life. I grew up hard of hearing, but it was the kind of hard of hearing that cut me off from people in many ways. The sounds which came through my brain were very scrambled. I depended heavily on lip reading to get by. Group conversations were a nightmare and next to impossible to follow. I couldn't use the phone to call my friends. In a school full of peers, there were times I felt very, very alone.  I had always measured myself against people with normal hearing and continually felt I came up short. I was thankful for the friends who saw past the inabilities and focused on the abilities.  I measured my self-worth by those very friends who told me, yes, I mattered. Then I became deaf, and if I thought it was bad before, it was really bad for a while.

What saved me was two things-- one, I transferred to a college where I was surrounded by deaf and hard of hearing people who had a very different outlook on what it meant to be deaf/hard of hearing; and two, I woke up one morning and had an epiphany: I could continue to be miserable or become the best possible deaf person I could be.

I chose the latter, which made all the difference.  Even today, I still have my struggles with communication, but becoming deaf turned out to be the greatest blessing in my life.

A few years after I had become deaf, I met a deaf blind artist who sketched my portrait one night as I volunteered in her art class. The other artists had normal sight and hearing. But what Fran Preston saw with her limited vision sketched a beautiful me, far more beautiful than what the sighted artists created. Then I met Barb-- who communicated with signs in the palm of her hand. I ended up visiting her weekly, signing into her palm as we walked the neighborhood training her new service dog on long walks. I described the flowers we stopped to smell them-- and there was pure joy on her face as she took it all in. I soaked in that joy.

I worry about this story of the twins; how will it affect the young deaf folks who are slowly losing their vision to Usher's Syndrome-- where is their hope after reading this? My friend Sue has two boys who are facing this challenge. Where are their idols-- the ones who are climbing mountains, like Heidi Zimmer is? We need those stories more now than ever.  Collectively, as a society, we need to examine our beliefs about people with disabilities and the messages we have out there.  Take a moment to get to know Kathy Buckley, Chad Hymas, Kyle Maynard, Sean Stephenson, Stephen Hawking and Nic Vujicic --  can you imagine the world without their presence?

The twins' story makes me sad. Really sad.  Forty-five years old with so much life ahead of them.

 

 

 

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