[Blindtlk] Fw: [blind-family] More research new
Graves, Diane
dgraves at crc.IN.gov
Tue Mar 6 12:47:40 CST 2007
I'm sorry Jenn. Apparently I was wrong about Lorraine, but I do know
that we have had blind, wheelchair bound members in the organization who
do travel independently. I'll do some checking, and see if I can get a
contact person who could tell you more about this.
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: Tuesday, March 06, 2007 11:35 AM
To: NFBnet Blind Talk Mailing List
Subject: Re: [Blindtlk] Fw: [blind-family] More research new
Hi Diane,
Thanks for your comments. You're right, I don't have family support. Not
that I want to bring more attention to myself or anything, but I really
don't have anyone to help me out. People try, I know, but sighted people
just don't get it because they get all bent out of shape when I try and
do
something that they think is impossible. I guess in a way, that's all
I've
been trying to get across. It may have sounded like a whining session.
For
some reason I just kind of went off the deep end when this topic was
started- sorry about that, I am a very emotional person.
I think it would be possible to go to Louisiana, although I would have a
lot
of things to consider. I do have medical supplies that are a necessity,
and
although I know it's not that difficult to transfer SSI from one state
to
another, I have to admit it's a bit overwhelming for me. Even if I just
stayed there for a few weeks, the medical supplies would still need to
be
shipped out. My parents don't want to be bothered; it's too much of a
hassle, and I can't go without the supplies. It's not impossible, just
not
really something my parents would be willing to do. There is the Carol
Center in Massachusetts; ORS did offer to have me go there, but again my
parents won't help me out. The state was only going to pay for me to go
for
about a month, so transferring SSI wouldn't be an issue. It's something
I
can look into, however until I'm actually living in my own apartment,
the
training won't really do me much good, and Lord only knows how long it
will
be until I move.
Who is this person you mentioned? It would be nice to talk to someone
who
knows from experience how it is.
Jen
----- 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 9:41 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
>
>
> --
> 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
More information about the blindtlk
mailing list