[nabs-l] Blindness is scary-how to teach otherwise while still being compassionate

Tue Oct 15 20:00:40 UTC 2013

Hi all,

These ideas are very interesting, and I really appreciate the feedback.

As Sandra identified, it was kind of shocking for me too-even though I
didn't think of it in that way till after I read her email and thought
about it.  No one likes to hear their friend has any significant
health issue, but the fact that blindness is involved really stands
out to me.  I think Arielle and Julie were spot on; I tried to
empathize but now I'm not totally sure I can really.  I mean, I did
have a really bad fear of blindness/going totally blind when I was
about 12 or 13, but I think that was because as a child I didn't quite
understand my circumstances.  I think that understanding that a risk
of losing vision did not mean I would lose vision, and even if I did I
could continue what I usually do with some more modifications.  Once I
began hanging out with other blind people my age and met positive role
models, I was able to adjust and know that if I were to go blind the
next day I would have the skills and knowledge to help me continue
with life, even though I would have to make some adjustments.

I was thinking of comparing vision loss to other senses and what I
would feel like if I lost functioning of a limb or something.  Having
not learned adaptive techniques as a child, I can see how a sighted
person would have no clue how to pick up and move on after going
blind.  Even simple questions like, "How will I feed myself?" can seem
like mountains rather than molehills to them.  Things like cooking,
sorting laundry, and traveling around a college campus could seem even
more difficult or frustrating.

I talked to a psychologist I know about it today, and he brought up
some very good points that I as a person with a congenital condition
did not think of, even though I sort of went through it as a teenager.
 He said that the unfair position people with disabilities are placed
in is that their lives are seen as tragic, and their disability is
something to be mourned.  Obviously those with disabilities know they
can lead productive lies in spite of the stereotypes, but a person who
acquires a disability has a much harder time adjusting because they
have grown up seeing people with disabilities as those who should be
pittied.  Even if they meet a few people with disabilities who are
really independent, they might not change their stereotypical view.
E.G, my friend/roommate describes me as "High functioning" because I
am the first blind person she's met, and although she does not have a
blind person who is less independent to really compare me to or bass
that assumption off of, she perceives me that way because of the
stereotypical, helpless/bumbling blind person.  Really, I just use
alternative techniques to do the same things she and my other roommate
do.  I also told him about a comment she made that bothered me a bit;
she was saying how happy she was that she probably wouldn't go blind,
and there was a comment from a family member of her's on facebook that
said something like, "The devel will not win this," so I was kind of
taken aback.  He said he could see how that, as her friend, I might
think "Does that make a statement of what she thinks of me/my life?,"
but the reality of it is that things are just going to seem a lot
scarrier to her, and even more so to her family members who have not
met me or another blind person because they just don't know.  I know
she doesn't mean to come across that way, but she did not grow up with
the same perceptions of people with disabilities as I or any of us on
this list did.  So, it does seem weird to me that I am called
"High-functioning" rather than independent, or that I would see a
comment that condemns blindness so strongly, but that is because I had
a supportive family, the NFB, and friends who were either interested
in things like braille and my technology or didn't say anything about
my blindness at all.  I mentioned that I felt bad for being caught off
guard by these things, but the guy I spoke to said that as someone who
has lived their life in a given way, hearing that your life is bad
when you don't feel it is can naturally be a little perturbing.
Changing perceptions of people with disabilities is what consumer
organizations like the NFB are trying to do, and I've done that at
least a little by showing her by example that blindness does not
indefinitely mean helplessness or dependence.

Someone off-list suggested I should see about taking her to an NFB
function.  I am not going to try this avenue for a while, as right now
she is not ready for that kind of thing, and even afterwards I don't
know if going to a meeting full of blind people would make her feel
awkward.  She knows I go to chapter meetings, so if the time and
conditions are right, and she wants to go some time in the future,
then taking her with me to a chapter meeting might be good.  I have a
feeling that it will be a pretty good period of time before I can even
bring that subject up to her, and even then I'll just have to play it
by ear and see what she wants to do and how the treatment is going.

The good news is that this is treatable.  (She found out she does have
it but she's already on a treatment plan), so hopefully no further
damage will occur.  And if it does then my other roommate and I will
be there for her.  On the plus, she took an interest in braille last
night which she has never done before, so we were able to geek out
over it for a while and she seemed to like it.

P.S:  Julie, I have heard of that documentary.  Rest assured I will
not let her get ahold of it.  :)

On 10/15/13, Bobbi Pompey <pompey2010 at yahoo.com> wrote:
> Hello, I've had low vision my whole life but it's progressively getting
> worse, so I can relate a little bit. I honestly don't think there is much
> that can be said to "cheer her up". I am well aware of the countless
> abilities of blind people. But, I still sit up crying sometimes at the
> thought that I could be blind one day.
>
> My advice would be to support her and realize blindness is a hard thing to
> wrap your head around, and if you are religious, pray for her.
>
> Best of luck
>
> Bobbi A. L. Pompey
> (336) 988-6375
> pompey2010 at yahoo.com
> http://pompey2050.wix.com/bobbi-pompey
>
>> On Oct 14, 2013, at 11:44 PM, Julie McGinnity <kaybaycar at gmail.com>
>> wrote:
>>
>> Hi Kaiti and all,
>>
>> This is very interesting.  I have been thinking about this lately due
>> to a film that was shown here last week on this very topic.  I don't
>> know how many of you have seen the film Going Blind, a documentary
>> about how people deal with losing their sight, but I would not
>> recommend it for someone who might be losing vision.  I won't go into
>> all the details(I could fill pages with my opinions on the film), but
>> it got me thinking about the level of panic sighted people must
>> experience when they are losing their vision.
>>
>> Yes, we know that they can do just about anything they've done before
>> losing their sight, but sight is a part of them, a strong part of
>> them.  Many of us who have grown up not seeing or with limited vision
>> are used to being unable to see pictures, facial expressions, and
>> films--and let's not even talk about driving.  Imagine losing your
>> hearing or your sense of touch in your fingers.  On a smaller scale,
>> think about what would happen if you broke your hand or wrist.
>> Reading braille, writing, and using a cane/dog would be extremely
>> difficult for a long period of time.  Many of us rely on our hearing
>> for navigation and getting information.  Losing that would be
>> devastating to us, even though we know we could manage.  Knowing
>> something mentally and truly understanding it are two different
>> things.
>>
>> I would be very interested to hear from someone who lost their sight
>> later in life but then embraced NFB philosophy.  How would this change
>> the grieving process?  How can we(those of us who have always been
>> blind) better understand what it's like to lose sight as an adult?
>>
>> Kaiti, I think the best thing you can do is be there for her and
>> answer any questions she may have.  I could be wrong about this, but I
>> think it's difficult for those of us who have lived with blindness all
>> our lives to understand and empathize with those who are full of fear
>> at the prospect of losing their vision.  After all, we've lived very
>> productive lives without vision.  But I think that these two
>> experiences represent two sides of the same coin.
>>
>>
>>
>>> On 10/14/13, Arielle Silverman <arielle71 at gmail.com> wrote:
>>> Hi Kaiti and all,
>>>
>>> I think this is an excellent question and an issue we all deal with as
>>> NFB members. We often meet folks who are losing vision and try to
>>> offer them  support and resources. Sometimes it can be hard for us who
>>> are used to blindness to understand what they are experiencing. I know
>>> that I have offered information and resources to people who contact me
>>> about their moms or dads losing sight, and they tell me that their
>>> parent does not want the information because he/she is too depressed
>>> or scared to deal with it yet. This is a little hard for me to
>>> empathize with, as someone who has been totally blind my whole life.
>>> Usually what I try to do is work with the person and answer whatever
>>> questions they ask me, but don't preach to them or tell them about
>>> things unless they want to know. For example, sometimes I come across
>>> folks who don't want to use canes but are losing vision and would
>>> clearly benefit from using a cane. I don't nag them about using a cane
>>> unless they specifically say that they are having trouble getting
>>> around or identifying their blindness to others, at which point I
>>> casually suggest that a cane might help with those difficulties they
>>> are having. I want to give them information and feedback but also
>>> respect their choices and their feelings about the situation.
>>> I would suggest that you can just be a supportive friend and listen to
>>> her concerns and emotional expressions. If she asks you how you do
>>> things, you can share techniques with her and point her to other blind
>>> role models, but that may not be something she is interested in yet.
>>>
>>> Best,
>>> Arielle
>>>
>>>> On 10/14/13, Sandra Gayer <sandragayer7 at gmail.com> wrote:
>>>> Hello Kaiti,
>>>> It sounds as though you're having a tough time emotionally yourself.
>>>> Your friend won't be thinking rationally at this stage because of her
>>>> fear of the unknown ahead of her. It doesn't matter that the chances
>>>> of her losing her sight are remote, the fact is, there's still a
>>>> chance and she's trying to prepare herself mentally for that. The best
>>>> thing you can do is be there for her, listen to her worries and fears
>>>> and try and comfort her. In short, what you're already doing.
>>>>
>>>> It would do you no harm to clear your mind of all this sometimes, take
>>>> a mental break from it.
>>>> Very best wishes,
>>>> Sandra.
>>>>
>>>>> On 10/14/13, Kaiti Shelton <crazy4clarinet104 at gmail.com> wrote:
>>>>> Hi all,
>>>>>
>>>>> I am confronted with an interesting situation.  A very close friend of
>>>>> mine may/may not have a neurological proglem which, if left untreated,
>>>>> could cause damage to the optic nerve and therefore blindness.  I'm
>>>>> trying to be a good friend and be supportive, because what she's going
>>>>> through is definitely not comfortable or easy by any means, but she
>>>>> doesn't even have the test results or know of a treatment plan and
>>>>> she's already thinking about the what ifs associated with going blind.
>>>>>
>>>>> It's really difficult, because I realize that it is scary to think
>>>>> about; I probably would not be a happy camper if my vision drastically
>>>>> changed, and that's even with the knowledge that it could do so in a
>>>>> way that would further limit the sight I have/make me totally blind at
>>>>> any time if the right thing were to go wrong having been drilled into
>>>>> me since childhood.  I would imagine that discomfort/annoyance would
>>>>> be at least ten-fold for a person who has spent nearly two decades as
>>>>> a sighted person, with little to no contact with a blind person until
>>>>> they met me in college.  Yet, I feel somewhat awkward because I know
>>>>> that blindness is not the worst thing that could happen to a person by
>>>>> far, and that I've shown her by example that one does not need sight
>>>>> to do well in school, to cook and clean around an apartment, to have a
>>>>> job, or to be successful in general.  I realize that seeing someone
>>>>> else do things differently and imagining yourself have to do them a
>>>>> different way is terrifying too, if I had to suddenly switch to using
>>>>> a foreign language or sign language to speak I'd definitely be
>>>>> freaking about the ramifications of being out of the loop, and perhaps
>>>>> that is what this is like a bit.
>>>>>
>>>>> I'm just trying to think of ways that I can be supportive while still
>>>>> showing her that even if the worst does happen, things can be
>>>>> done---just differently.  I feel like that is one of the best ways I
>>>>> can be supportive, because I have the knowledge about the subject that
>>>>> others around her do not, and since blindness has such a bad
>>>>> connotation, it is possible that those who don't know much about it
>>>>> are not helping the situation by panicking themselves.  I'm trying to
>>>>> be empathetic as well, because although I have lost vision in chunks,
>>>>> I am probably the only person she knows who has experienced any form
>>>>> of vision loss, and there was a time in my younger teen years when I
>>>>> was terrified of losing all of my vision in which I had to put
>>>>> blindness into perspective and realize that much worse could happen to
>>>>> a person, too.
>>>>>
>>>>> So far I've been telling her to not freak about it is she doesn't even
>>>>> have test results yet, which I realize is much easier said than done
>>>>> but I thought it was the best I could do.  I've also reminded her that
>>>>> even if she does have this condition there are treatment plans which
>>>>> could prevent vision loss, so even if she were to receive the
>>>>> diagnosis it is not a death sentence for her sight.  I do not know
>>>>> what else I could do at this point but remind her of those things,
>>>>> since the rationalization seems to help for a while once she thinks
>>>>> through it.
>>>>>
>>>>> I would love to hear from people who have had similar experiences
>>>>> and/or lost sight later in life.  If you are the latter and you knew
>>>>> there was a possibility of blindness before it happened what specific
>>>>> aspects about blindness bothered you the most?  What, if anything, did
>>>>> others do that made you feel a little better about the situation?
>>>>> What do you wish others would have done to help you?  What would you
>>>>> suggest I do to help my friend?  Did contact with other blind people
>>>>> help you durring that time?  (The thing I'm worried about is her
>>>>> saying, "Well you can't empathize because you don't know what it's
>>>>> like," because in terms of having the sudden shock I do not, but
>>>>> everything else I do).  Any thoughts?
>>>>> --
>>>>> Kaiti
>>>>>
>>>>> _______________________________________________
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>>>>
>>>>
>>>> --
>>>> Soprano Singer
>>>> www.sandragayer.com
>>>>
>>>> Broadcast Presenter
>>>>
>>>> www.insightradio.co.uk/music-box.html
>>>>
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>>
>> --
>> Julie McG
>> National Association of Guide dog Users board member,  National
>> Federation of the Blind performing arts division secretary,
>> Missouri Association of Guide dog Users President,
>> and Guiding Eyes for the Blind graduate 2008
>> "For God so loved the world that he gave his only Son, so that
>> everyone who believes in him may not perish but may have eternal
>> life."
>> John 3:16
>>
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-- 
Kaiti