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

Dave Webster dwebster125 at gmail.com
Tue Oct 15 21:04:02 UTC 2013


Hi Kaitie.  I'm Dave.  I currently am not attending school anywhere and am
not a student but in a few weeks here will be attending the Davidson program
for independence here at Junior blind out here in la.  I found this topic
interesting because my family has some particular beliefs about blindness
that are not true.  My ysister has actually told me that it sucks that I'm
blind.  My dad seems to think he knows what I need help with and don't need
help with.  An example would be when I moved into my place here in al hambra
he told me that I needed sighted help organizing my closet.  He believs that
blind people can do some things but that the majority of stuff we need
sighted help with.  I can't fault him for that because growing up we were
not part of the nfb.  He believes what he believs with all of his heart but
unfortunately he  and all of the others in my family were miss led.  In fact
when I was growing up, I didn't find this out until later but they had heard
about the nfb when I was growing up but they felt that it was jus ttoo
militant and too radical so they didn't want me to be apart of that so they
kept it from me on purpose.  When I went to the Louisiana center and they
found out that it was an nfb center they actually wanted to fly out there
and bring me back home.  The funny thing was that they had heard about that
center through friends but.  They just didn't realize it was an nfb center
so.  Hoever, I'm gladnow that I'm part of a chapter and am furthering the
great work  of the nfb.
-----Original Message-----
From: nabs-l [mailto:nabs-l-bounces at nfbnet.org] On Behalf Of Kaiti Shelton
Sent: Tuesday, October 15, 2013 1:01 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] Blindness is scary-how to teach otherwise while still
being compassionate

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

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