[Blindtlk] Fw: [blind-family] More research new
Mike Freeman
k7uij at panix.com
Tue Mar 6 09:05:28 CST 2007
Diane:
Lorraine is most definitely not in a wheelchair and is sighted -- not
that it matters. Maurine Pranghofer of Minnesota is in a wheelchair and
is blind though I haven't seen her at NFB conventions for a while.
Mike
----- Original Message -----
From: "Graves, Diane" <dgraves at crc.in.gov>
To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
Sent: Tuesday, March 06, 2007 6:41 AM
Subject: Re: [Blindtlk] Fw: [blind-family] More research new
Good Morning to All,
Several points I would like to make.
First of all, I definitely understand where Steve is coming from, and I
think he has a very healthy perspective. He isn't saying the
convenience of sight wouldn't be nice, if he could have it without going
broke or taking anything away from those who are important to him, or
without taking extreme physical risk that might threaten the quality of
his life. He is already living a quality life, and he is comfortable
and happy with that life. I see nothing wrong with that or
condescending in that perspective at all.
For instance, I wouldn't mind being rich and never again having to worry
about budgeting to pay bills either. But I'm simply not willing to
throw the megabucks away that some of my coworkers do on the lottery
tickets, just on the off chance that it might happen.
I am blind due to retinoblastoma, which, for those who may not know, is
a cancer of the retina. As a result of this, I had to have some
radiation therapy as a baby which caused some facial deformities.
Technology is much kinder today, but back then, it was a pretty blunt
instrument. The end result was that my eyes and that part of my face
are not very attractive to look at. I have had some cosmetic surgery,
but it still hasn't given me a completely "normal" appearance. As we
know, though physical appearance may not be important to many of us, it
is extremely important to the sighted. Thus, I wanted to fully correct
the problem.
I bring this up, because, in consulting with a cosmetic surgeon some
years ago, he indicated that there were some additional things that
could conceivably be done, but the reconstruction of the bone involved
going in and moving the brain around and manipulating the brain in that
area, which, of course, carries some sizable risks.
What did I do? I considered all of this, the pros and the cons, and
elected to forego this risky procedure and wear the dark glasses to aid
with my appearance. Would I like to be able to get rid of the glasses
and not be repulsive to those who look at me? Yes I would, but I'm not
willing to risk my current capabilities and functionality in order to
achieve this.
Secondly, I do think we need to be careful when chiding others for not
having the same level of confidence and positive perspective as we do.
(Again, I'm not talking about Steve's comments here. I understand Steve
perfectly.) However, others have been more abrasive.
We have to remember that the majority of us have the perspectives we do
because we have had positive role models, and parents who expected us to
live normal lives an so many other positive tools to work with.
It doesn't sound to me like Jenn has had much family support at all,
and, though she has known other blind people through the NFB, it doesn't
sound like she has known any other successful blind wheelchair bount
people.
I do know that there are some in the NFB, although I don't know them
personally or don't' know who they are, but maybe we can get that
information for you Jen.
I may be wrong on this point, but isn't' Lorraine Rovig in a wheelchair,
or wasn't she at one time? Does anyone know. It seems like I have
heard someone talking about her being in a chair and using a cane.
Jenn, is it possible you might be able to get out of Rhode Island where
the services are so "crummy," and maybe go to the Louisiana Center, or
one of our other NFB training centers where they might be able to help
with the mobility issues?
Anyway, I think everyone's situation is different, and all factors need
to be considered.
Diane Graves
Civil Rights Specialist
Indiana Civil Rights Commission
Alternative Dispute Resolutions Unit
317-232-2647
"Attitude is a little thing that makes a big difference."--Winston
Churchill
Confidentiality Notice: This E-mail transmission may contain
confidential and/or legally privileged information intended only for the
individual or entity(ies) named in the E-mail address. If you are not
the intended recipient, be advised that any unauthorized disclosure,
copying, distribution, or acting in reliance upon the contents of this
E-mail is strictly prohibited. If you have received this E-mail
transmission in error, please reply to sender to arrange for the return
and proper delivery of the transmission. Subsequently, delete the
message from your system immediately.
-----Original Message-----
From: blindtlk-bounces at nfbnet.org [mailto:blindtlk-bounces at nfbnet.org]
On Behalf Of jaber37837 at cox.net
Sent: Monday, March 05, 2007 4:16 PM
To: NFBnet Blind Talk Mailing List
Subject: Re: [Blindtlk] Fw: [blind-family] More research new
Thanks Cindy, but I've had someone help me with the cane. Her suggestion
was
that I get a chair with a one-armed geer on it. I did that, but it
doesn't
help-I almost broke my hand trying to use it. I live in Rhode Island
where
the services are really crummy. I've tried using the cane, but there's
always the anxiety of going the wrong way, which happens more often then
not; also For reasons I won't get into here, I don't trust anyone I
don't
know, so asking someone for help is not something I will do unless I
know
the person. I can't get an electric chair because it's too heavy to put
in
the car if I go somewhere in the car with someone (it's hard enough to
get
someone to take me out somewhere with the regular chair), and it's too
expensive to be taking the bus all the time.
I know, all this sounds like fixable excuses...it's just all too much.
I don't expect anyone to understand...nobody does.
I go to church every week, but I've got to ask someone from church to
pick
me up because there's no bus service on Sundays where I live and even if
there were, the bus doesn't go to that area. I just feel like a total
burden
to everybody there, even though I know most of them would be more than
willing to pick me up to go to a dance or dinner or something.
Anyway...
Jen
----- Original Message -----
From: "Cindy Handel" <cindy425 at verizon.net>
To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
Sent: Monday, March 05, 2007 3:48 PM
Subject: Re: [Blindtlk] Fw: [blind-family] More research new
> Jen,
>
> Have you ever considered that you might need some help in learning to
> use
> a
> cane or dog with your wheelchair? If you had that instruction, maybe
you
> wouldn't feel so anxious and it would enable you to get out of your
house
> more often.What state do you live in? Maybe someone on the list knows
of
> an
> instructor who could help you with this.
>
> Cindy
> ----- Original Message -----
> From: <jaber37837 at cox.net>
> To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
> Sent: Monday, March 05, 2007 3:31 PM
> Subject: Re: [Blindtlk] Fw: [blind-family] More research new
>
>
> Well, I can't go anywhere because I can't see where I'm going. I'm in
> a wheelchair as well, so it's very difficult for me to use the cane to
> get where I've got to go. Plus, it gives me all kinds of anxiety. I
> spend my whole day in the house, in my room because I can't navigate
> anywhere without having anxiety attacks. Once in a while I go out, but
> I've got to have someone with me, and that's almost always impossible
> because I don't have anyone to go with me. When I take the bus to the
> NFB meetings, the driver has to push me in the building and into the
> room where the meeting is held because I'm just too anxious. So no, I
> don't have to have sight good enough
> to drive a car, but I need enough sight to drive my chair, and not get
> injured in the process.
>
> As far as getting married goes, well it's true that there are plenty
> of blind people who are married, but I have the other disability to
> deal with too. I'm not saying there isn't anyone in the world that
> wouldn't be willing to marry me, but the odds are not in my favor. Who
> wants to deal with someone who can't walk and can't see and can't seem
> to function like a normal human being no matter how hard she tries? So
> far, nobody.
>
> I had 2100/20 vision in one eye before I went blind. I enjoyed seeing
> the sun everyday, I felt lucky to be able to see everything. Now I
> can't see anything, and at least for me, it's put all these obstacles
> in my way and I'm just too anxious and overwhelmed to deal with it.
> Sorry if I sound like I'm whining, but that's just the way it is for
> me, and nothing will change it until I can see something again.
>
> Before anyone says I need professional help, I see a counselor, and
> it's
> not
> helping.
>
> Jen
> Message -----
> From: "Cindy Handel" <cindy425 at verizon.net>
> To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
> Sent: Monday, March 05, 2007 2:54 PM
> Subject: Re: [Blindtlk] Fw: [blind-family] More research new
>
>
>> Jen,
>>
>> I have to admit that I don't quite understand your desire to see
>> where you're going. If you don't want to be able to see well enough
>> to drive a car or read a standard print book, what are you really
>> gaining? Additionally, you say that you can't live without being able
>> to see where you're going? Excuse me if this sounds rude, but what
>> are you doing now?
>>
>> I'm sorry that you haven't found the right person to marry, since
>> that's
>> a
>> desire. But, I don't believe this has anything to do with your lack
of
>> sight. There are plenty of blind people who are married, both to
other
>> blind people and to sighted people. So, even if you should gain some
>> vision, sometime in the future, it's not a guarantee that you'll
suddenly
>> find the love of your life.
>>
>> I'm interested in your thoughts on my questions.
>>
>> Cindy
>> ----- Original Message -----
>> From: <jaber37837 at cox.net>
>> To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
>> Sent: Monday, March 05, 2007 2:39 PM
>> Subject: Re: [Blindtlk] Fw: [blind-family] More research new
>>
>>
>> I can understand your point, but my situation is a bit different.
>>
>> I wouldn't have anything done unless there was a high success rate,
>> and then I wouldn't have to pay for it because I have Medicade. That
>> might not be an
>> option someday, but personally for me, having to file for bankruptcy
is
>> well
>> worth getting some sight back. I don't want perfect vision, I just
want
>> to
>> be able to see where I'm going. I can live with not being able to
read a
>> standard print book or even not being able to drive a car, but I
cannot
>> live
>> with not being able to see what's in front of me. It's different for
me;
>> I
>> don't have children, I don't have a job, and I'm not married (being
blind
>> has a lot to do with that), so I've got nothing to lose. I too have
been
>> hearing about all the progress being made in the retinal implant etc,
and
>> I'm getting sick of hearing my doctor talk about it; I'm always
saying,
>> "So
>> when is it going to happen?" and I keep getting the same answer,
"It's
>> not
>> talked about, it's privately funded" etc, I've heard it will be
available
>> in
>> five years yadayadoyada, but I just have to keep hoping every time I
go
>> to
>> the doctors that he might just say, "it's time." I won't hear that
for a
>> while, but I'm always hoping.
>>
>> Jen
>> ----- Original Message -----
>> From: "Steve Jacobson" <steve.jacobson at visi.com>
>> To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
>> Sent: Monday, March 05, 2007 2:16 PM
>> Subject: Re: [Blindtlk] Fw: [blind-family] More research new
>>
>>
>>> Kathy and others,
>>>
>>> Please humor me just a bit. Let's take a practical look at this.
>>> If there were no risks and no costs, and there were no
>>> complications, I would consider such a
>>> procedure even though I have always been blind. However, that's not
>>> what
>>> the choice will likely be. I would not, for instance, strap myself
>>> financially for the rest of
>>> my life for the kind of vision that might allow me to read headlines
or
>>> see some movement. If I can't pay for it and since I have already
been
>>> working and paying my
>>> own way for thirty years, is there a benefit to society to pay to
have
>>> my
>>> vision restored? What happens to my kids if something goes wrong
and I
>>> am
>>> no longer able
>>> to work after the surgery, infection or other complications for
example.
>>> There may be honest differences of opinions as to what vision
>>> restoration
>>> is worth, but some
>>> of the difference is whether one is truly looking at the impact.
Would
>>> one pay a million dollars to get their vision back? Probably, until
one
>>> starts thinking about the
>>> payments one would have to make for the rest of their lives and the
>>> impact
>>> it might have on one's family. In most cases, getting one's vision
back
>>> won't increase
>>> one's earning power enough to make the payments.
>>>
>>> I think that researchers often don't put a price on this type of
>>> thing and can't understand it when a lot of us don't just jump up
>>> and down with joy
>>> at the prospect of
>>> getting ones vision back, but when you start thinking about it and
you
>>> start to read about the limitations that might exist, then one
begins to
>>> think about the pros and
>>> cons.
>>>
>>> Another caveat to this whole thing that needs to be kept in mind is
>>> that some of us have been hearing about miraculous procedures for
>>> thirty years, and we start to
>>> get to the point where seeing is believing, if you will forgive the
play
>>> on words. Don't be too hard on those of us who might be both a
little
>>> skeptical and also realistic.
>>> Also don't misunderstand me, there is progress being made and some
sort
>>> of
>>> artificial vision is probably closer now than it was thirty years
ago,
>>> but
>>> the idea of driving
>>> down a freeway at 60 miles per hour totally depending upon an
electronic
>>> circuit that might be overloaded by something like a radar beam from
a
>>> police car scares
>>> me. I just don't think we'll see it happen real soon.
>>>
>>> Discussing what it might be worth to get vision and the
>>> complications associated with it is interesting. I would be curious
>>> to reactions to the above.
>>>
>>> On Mon, 05 Mar 2007 12:46:05 -0500, Kathy Davis wrote:
>>>
>>>>The point is that if medical advances are such that blind people can
>>>>see again, each person has the option to go for it or not.
>>>>Personally, I would go for it in an
>>> instant...How great it would be just to pop my key in to the
>>> ignition
>>> and
>>> just drive where ever I want whenever I want to do so. It would be
great
>>> to see the faces of
>>> my grandchildren. Like most of you, I totally accept my blindness
and am
>>> not one bit ashamed of it. It is a royal pain in the behind at times
>>> though. If you had a spinal
>>> cord injury and could take advantage of scientific advances that
would
>>> allow you to walk again, would you just say..."I am perfectly happy
not
>>> walking or standing
>>> so I want to stay this way?" I don't think so! If your blind child
could
>>> undergo a procedure that would allow your little one to see, would
you
>>> say..."no, it is respectable
>>> to be blind so I want my child to stay that way?"
>>>
>>>>Just some food for thought.
>>>
>>>>Kathy
>>>
>>>
>>>>>>> "Laurie Porter" <freespirit1 at tds.net> Thursday, March 01, 2007
>>>>>>> 10:28 PM >>>
>>>>I'm sure you'll agree that there will be lots of medical advances
>>>>using implants and other technologies. I find it an arrogant
>>>>assumption on Ray's part to assume that the only reason people would
>>>>take advantage of the opportunity to restore vision is because they
>>>>aren't comfortable with their
>>>>blindness. There is nothing wrong with desiring to see again. I lost
my
>>>>remaining sight somewhat recently, and I do imagine what it is like
to
>>>>see
>>>>agaiNI was blindd before and my attitude toward blindness has been
and
>>>>is
>>>>positive. In fact, it made me more prepared. I realized that I had
>>>>proved
>>>>to
>>>>myself that my complete loss of sight is not a tragedy, but merely
>>>>inconvenient at times. I had quite a bit of usable vision, but I've
>>>>always
>>>>considered myself blind. I used alternative techniques even when I
could
>>>>see. I read braille and always used my skills together with my
vision.
>>>>I've
>>>>never been ashamed of blindness, and I have never been ashamed of my
>>>>sight.
>>>
>>>>Now, for me, a rhetnal implant sounds pretty grizzly indeed and I
>>>>wouldn't consider it until it's been around for at least a decade or
>>>>so. I wouldn't
>>>>subject myself to invasive procedures that can be too risky. As for
the
>>>>sighted public being uncomfortable being blind, I still assert that
you
>>>>can
>>>>learn to be comfortable with your blindness and still have the
desire
>>>>to
>>>>see again.
>>>>----- Original Message -----
>>>>From: "Bonnie M Ainsworth" <cedarwoman1965 at neb.rr.com>
>>>>To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
>>>>Sent: Thursday, March 01, 2007 2:03 PM
>>>>Subject: Re: [Blindtlk] Fw: [blind-family] More research new
>>>
>>>
>>>>> Actually, I can understand why Ray said what he did. What about
>>>>> the
>>>>people
>>>>> who have never seen in their lives? I don't know how I would deal
>>>>> with
>>>>the
>>>>> idea of being thrown into a world in which I'd have to adjust to a
>>>>> whole
>>>>new
>>>>> lifestyle. I do have partial vision, but the thought of seeing
>>>>> fully
>>>>scares
>>>>> me. In all honesty, I feel more comfortable with the possibility
>>>>> of
>>>>losing
>>>>> my sight totally than seeing fully. I hope this makes sense.
>>>>> *SMILE*
>>>>>
>>>>> Bonnie Ainsworth
>>>>> Lincoln, NE USA
>>>>>
>>>>>
>>>>> ----- Original Message -----
>>>>> From: "Paul" <n7pzr at icehouse.net>
>>>>> To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
>>>>> Sent: Monday, February 19, 2007 8:48 PM
>>>>> Subject: Re: [Blindtlk] Fw: [blind-family] More research new
>>>>>
>>>>>
>>>>> Pardon me while I retch. What a stupid idea.
>>>>> Paul Whipple n7pzr
>>>>> Vice President Inland Empire Chapter
>>>>> of the National Federation of the Blind
>>>>> of Wa.
>>>>> phone 509/362/3148
>>>>> ----- Original Message -----
>>>>> From: "Ray Foret Jr." <rforetjr at bellsouth.net>
>>>>> To: "NFBnet Blind Talk Mailing List" <blindtlk at nfbnet.org>
>>>>> Sent: Saturday, February 17, 2007 9:01 PM
>>>>> Subject: Re: [Blindtlk] Fw: [blind-family] More research new
>>>>>
>>>>>
>>>>> No way!!! I don't want nor will have anything to do with such as
>>>>electronic
>>>>> eyes and things of that sort. To my way of thinking, these
>>>>>
>>>>> _______________________________________________
>>>>> blindtlk mailing list
>>>>> blindtlk at nfbnet.org
>>>>> http://www.nfbnet.org/mailman/listinfo/blindtlk
>>>
>>>
>>>>_______________________________________________
>>>>blindtlk mailing list
>>>>blindtlk at nfbnet.org http://www.nfbnet.org/mailman/listinfo/blindtlk
>>>>_______________________________________________
>>>>blindtlk mailing list
>>>>blindtlk at nfbnet.org
>>>>http://www.nfbnet.org/mailman/listinfo/blindtlk
>>>
>>>
>>>
>>> _______________________________________________
>>> blindtlk mailing list
>>> blindtlk at nfbnet.org
>>> http://www.nfbnet.org/mailman/listinfo/blindtlk
>>>
>>>
>>> --
>>> No virus found in this incoming message.
>>> Checked by AVG Free Edition.
>>> Version: 7.5.446 / Virus Database: 268.18.7/711 - Release Date:
3/5/2007
>>> 9:41 AM
>>>
>>
>> _______________________________________________
>> blindtlk mailing list
>> blindtlk at nfbnet.org
>> http://www.nfbnet.org/mailman/listinfo/blindtlk
>>
>>
>> _______________________________________________
>> blindtlk mailing list
>> blindtlk at nfbnet.org
>> http://www.nfbnet.org/mailman/listinfo/blindtlk
>>
>>
>> --
>> No virus found in this incoming message.
>> Checked by AVG Free Edition.
>> Version: 7.5.446 / Virus Database: 268.18.7/711 - Release Date:
3/5/2007
>> 9:41 AM
>>
>>
>
> _______________________________________________
> blindtlk mailing list
> blindtlk at nfbnet.org
> http://www.nfbnet.org/mailman/listinfo/blindtlk
>
>
> _______________________________________________
> blindtlk mailing list
> blindtlk at nfbnet.org
> http://www.nfbnet.org/mailman/listinfo/blindtlk
>
>
> --
> No virus found in this incoming message.
> Checked by AVG Free Edition.
> Version: 7.5.446 / Virus Database: 268.18.7/711 - Release Date:
3/5/2007
> 9:41 AM
>
>
_______________________________________________
blindtlk mailing list
blindtlk at nfbnet.org
http://www.nfbnet.org/mailman/listinfo/blindtlk
_______________________________________________
blindtlk mailing list
blindtlk at nfbnet.org
http://www.nfbnet.org/mailman/listinfo/blindtlk
More information about the blindtlk
mailing list