[nfb-db] Fwd: [Nfbnet-members-list] National Federation of the Blind Comments on Belgian Euthanasia of Deaf Men Losing Sight

[Steve Jacobson]

Scott,

Okay, I'm willing to let the social services agencies off the hook on this based upon what you have said.  <smile>  It also seems 
clear that this was not a sudden decision.  However, I still feel that as an organization, we are more or less obligated to 
respond to the story that the public is likely to see.  If the impression is given by some media that their course of action was 
due to being blind and loosing one's hearing, we have to try to convey that there are options that can make those disabilities 
something one can live with.  I don't see it as our responsibility to say "Well, it isn't just being blind and deaf that 
influenced their decision," because that really doesn't deal with some of the impression left.  While I can respect their decision 
as an individual, I don't think it would be appropriate for us as an organization to endorse their decision given current law and 
practices here in the United States.  

While I am not certain I would have inserted a request for donations, a great deal of what we do is to try to change the 
perception of blindness, including blind persons with hearing loss, to get people to feel that loosing one's eyesight does not 
mean that life has to be miserable and 
hopeless.  Therefore, I don't see how you can say that donations would have nothing to do with this story.  It may be less 
relevant to the facts of the full story, but it is very relevant to the less detailed versions.  I understand and respect that we 
may just disagree.

Best regards,

Steve Jacobson

On Wed, 16 Jan 2013 12:35:30 -0500, Scott Davert wrote:

>Hi Steven.
>First, my comments also have to do with the press release that was
>originally posted. I cannot believe NFB would put something out like
>that, talking about how tragic this was, followed by a paragraph
>asking for the support of the education of blind children. Not
>deaf-blind children, by the way, which was what this story was
>supposedly about. In fact, I don't feel that the story itself has
>anything to do with the request for financial support for this reason.
>As to my research, here's a quote from their surviving brother,
>further indicating that this was not something the brothers were
>forced in to:
>
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.

>The article further states:
>"Mr Verbessem said his twin brothers were going blind with glaucoma and
>that Eddy had a deformed spine and had recently undergone heart
>surgery."
>SO, from this article, we can determine this isn't only about
>deaf-blindness. It's about other medical conditions as well. The
>article I'm quoting is at:
>http://endtimebibleprophecy.wordpress.com/tag/two-deaf-twins/
>Other articles also have quotes from their doctor saying they had
>"other severe medical problems". One such article is in the Brittish
>paper the Daily telegraph, and here's another article siting these
>issues:
>http://news.nationalpost.com/2013/01/14/deaf-twins-killed-by-legal-euthanasia-had-to-search-two-years-before-they-found-someone-
who-would-do-it/
>The second article says that they also had to search 2 years to find a
>hospital that was willing to go along with this. It was obviously
>something the brothers had plenty of time to think about, talk with
>friends and family, and then carry out their decision. This was no
>knee jerk reaction. I understand some of the psychological
>ramifications and struggles one must go through when experiencing a
>sensory loss both from the perspective of someone doing it, and also
>from the perspective of the field of counseling. I think in most
>western societies, we're advanced enough to understand that a knee
>jerk reaction to kill oneself wouldn't be permited. However, when the
>choice is conscious and the process well thought through as appears to
>be the case here, I don't see an issue. We have to respect their
>decision. It is, after all, their lives.
>On the other hand, one cannot help but be disgusted by the media who,
>in most cases, overlooked the other issues the twins had. Most of the
>focus was placed on the loss of sight. From the quoted articles above,
>plus my talking to someone who knew them, I feel safe in my conclusion
>about this.

>Scott

>On 1/16/13, Beth Koenig <bethko at gmail.com> wrote:
>> The way this was reported in mainstream media over the internet made it
>> seem like the only issue was blindness. This is not good. Many people do
>> not understand blindness and need education. This story mentioned nothing
>> about pain or other disorders and it was spread all over the internet.This
>> is really bad, people who are losing their sight might think that it is ok
>> to die over it instead of getting the education needed. Others might assume
>> that deaf people losing their vision want to die only for that reason. I
>> know pain and quality of life is an issue and it's good that they have that
>> option in Belgem for those that need it.
>> However, the way this was presented we now have to fight the negative image
>> of blindness that may have resulted. This article is the one prospective
>> that most people reading it will ever have on the issue and there fore we
>> must respond to that prospective.
>> Thanks,
>> Beth Koenig
>> On Jan 16, 2013 6:29 AM, "Scott Davert" <scottdavert at gmail.com> wrote:
>>
>>> Hello all.
>>> As is always the case, there is a lot more to the story. As it turns
>>> out, one of the twins could only sleep while sitting up, and the other
>>> had significant spinal issues to the point where he could barrily
>>> walk. Also, both were having greater difficulty eating and also were
>>> having trouble keeping pain medication down. They were supposedly in a
>>> great deal of physical pain. Why does NFB not report this as well? In
>>> fact, their orriginal statement is how awful it is, and the next
>>> paragraph they're asking for donations. I'm a bit shocked that it was
>>> done that way, and also disturbed by the fact that this was not
>>> researched better.
>>>  Whether you agree with the fact that the twins came to the decision
>>> they did, it's best to do a bit of your own research and then draw
>>> your conclusions, as the leaders of this organization have clearly not
>>> done. All the blindness and deaf-blindness organizations are focusing
>>> on the deaf-blind part of this, even though there is much more to the
>>> story. I believe this is why the World Federation of the deaf-blind
>>> has not released a statement on this yet. They're gathering all the
>>> facts and they realize there is more to this isssue than just
>>> deaf-blindness.
>>> However, while on the topic of education, it's certainly an important
>>> topic to spread. Parts of even Belgium do not have a deaf-blind
>>> organization. The French part of the country does not have such
>>> associations as the Flemish part, and I suspect part of the education
>>> issue may sstemm from the difference in languages. I know France has a
>>> deaf-blind association, and perhaps the French part of the country
>>> should reach out to them, but I have no idea beyond these facts as to
>>> what is going on over there. I'm also not sure if the twin brothers
>>> were residing in the Flemish or French part of Belgium.
>>>
>>> Scott
>>>
>>> On 1/16/13, Marsha Drenth <marsha.drenth at gmail.com> wrote:
>>> > Janice,
>>> >
>>> > I saw this. Its sad, very very sad. I understand that people have the
>>> right
>>> > to do what they please with there own lives. But I imagine that those
>>> > individuals have no clue what a DB person could do. Do they not know of
>>> > Helen Keller? Its like me, because I am losing my hearing, I am going
>>> > to
>>> go
>>> > and kill myself, which I am not going to do. Yes we all have
>>> > challenges.
>>> And
>>> > maybe those men don't know what or how to deal with the challenges.
>>> > This
>>> is
>>> > where education is needed. I agree completely and totally!
>>> >
>>> > Marsha drenth
>>> > Sent with my IPhone
>>> > http://adventureswith2feet4paws.blogspot.com
>>> >
>>> > On Jan 16, 2013, at 8:14 AM, Janice Toothman <
>>> janice.toothman at verizon.net>
>>> > wrote:
>>> >
>>> >> I am shocked and saddened my this news. This emphasizes the need for
>>> >> education on deaf-blindness.
>>> >> Janice
>>> >>
>>> >>
>>> >> -------- Original Message --------
>>> >> Subject:     [Nfbnet-members-list] National Federation of the Blind
>>> Comments
>>> >> on Belgian Euthanasia of Deaf Men Losing Sight
>>> >> Date:        Tue, 15 Jan 2013 21:00:33 -0600
>>> >> From:        David Andrews <dandrews at visi.com>
>>> >> To:  nfbnet-members-list at nfbnet.org
>>> >>
>>> >>
>>> >> FOR IMMEDIATE RELEASE
>>> >>
>>> >> CONTACT:
>>> >> Chris Danielsen
>>> >> Director of Public Relations
>>> >> National Federation of the Blind
>>> >> (410) 659-9314, extension 2330
>>> >> (410) 262-1281 (Cell)
>>> >> cdanielsen at nfb.org
>>> >>
>>> >> National Federation of the Blind Comments on
>>> >> Belgian Euthanasia of Deaf Men Losing Sight
>>> >>
>>> >> Baltimore, Maryland (January 15, 2013): The National Federation of the
>>> >> Blind, the largest organization of blind people in the United States
>>> with
>>> >> over 50,000 members, including many deaf-blind individuals, commented
>>> >> today on the state-sanctioned death by lethal injection of deaf twins
>>> >> in
>>> >> Belgium.  Upon learning that they were also going blind, the deaf
>>> >> twins
>>> >> sought and were granted euthanasia.
>>> >>
>>> >> Dr. Marc Maurer, President of the National Federation of the Blind,
>>> said:
>>> >> 
This disturbing news from Belgium is       a stark example of the
>>> common,
>>> >> and in this case tragic, misunderstanding of disability and its
>>> >> consequences.  Adjustment to any disability is difficult, and
>>> >> deaf-blind
>>> >> people face their own particular challenges, but from at least the
>>> >> time
>>> of
>>> >> Helen Keller it has been known that these challenges can be met, and
>>> >> the
>>> >> technology and services available today have vastly improved prospects
>>> for
>>> >> the deaf-blind and others with disabilities.  That these men wanted to
>>> die
>>> >> is tragic; that the state sanctioned and aided their suicide is
>>> >> frightening.

>>> >>
>>> >>
>>> >> The National Federation of the Blind needs your support to ensure that
>>> >> blind children get an equal education, to connect blind veterans with
>>> the
>>> >> training and services they need, and to help seniors who are losing
>>> vision
>>> >> continue to live independent and fulfilling lives. To make a donation,
>>> >> please go to www.nfb.org.
>>> >>
>>> >>
>>> >>
>>> >> ###
>>> >>
>>> >>
>>> >> About the National Federation of the Blind
>>> >>
>>> >>
>>> >> The National Federation of the Blind (NFB) is the oldest, largest, and
>>> >> most influential nationwide membership organization of blind people in
>>> the
>>> >> United States.  Founded in 1940, the NFB advocates for the civil
>>> >> rights
>>> >> and equality of blind Americans, and develops innovative education,
>>> >> technology, and training programs to provide the blind and those who
>>> >> are
>>> >> losing vision with the tools they need to become independent and
>>> >> successful.  We need your support.  To make a donation, please go to
>>> >> www.nfb.org.
>>> >>
>>> >>
>>> >>
>>> >> <Attached Message Part>
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>>>
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