[Ohio-talk] Advice for helping others cope with vision loss

Thu Oct 17 16:40:13 UTC 2013

Dear Kaiti,

It is early days for your roommate. She is going to have to adjust to this
spectacular loss. She knows full well that you deal with the situation
without thinking twice about it, but at this point that probably  just makes
things harder for her. You are going to have to be patient. Grab the family
if you can to warn against pity-motivated helpfulness. You want to build a
support community that is understanding but confident in her ultimate
ability to cope.

I am worried about the headaches and the carrying limits. These strike me as
potentially more limiting. I would concentrate on trying to work out coping
mechanisms for these troubles. This is not easy for you, but you are bound
to be good for her in the long run.

Good luck,
Barbara

-----Original Message-----
From: Ohio-talk [mailto:ohio-talk-bounces at nfbnet.org] On Behalf Of Kaiti
Shelton
Sent: Thursday, October 17, 2013 10:29 AM
To: NFB of Ohio Announcement and Discussion List
Subject: [Ohio-talk] Advice for helping others cope with vision loss

Hi all, 

I'm asking for advice, because I have very little experience with this.  My
friend and roommate, due to some odd medical circumstances, was diagnosed
legally blind last weekend.  She still has the vast majority of her vision,
(she lost some peripheral, but not enough to lose her driving priviledges).
Nevertheless, the diagnosis has her freaking about about the potential for
going blind some day in the future.  She is on treatment now so it's
possible that her vision won't decrease further at all.  She's so upset
about it though that she's fixating on it rather than the other neurological
symptoms associated with her condition, which are effecting things like her
ability to concentrate , and her ability to walk long distances and lift
things above a certain weight is compromised by the treatment she is on.
She also gets really bad, migraine-level headaches, which are so painful
that they'll take her out of commission from whatever she's doing.  

My other roommate and I are a bit unsure of how to handle this.  The other
roommate is sighted, but had a grandparent who went blind later in life and
still managed to be independent.  Both she and I know blindness is not the
worst thing that could happen to a person, and are far more concerned with
the other symptoms than the vision.  We feel for her circumstances, but
we're caught in the middle because even my roommate knows blindness is not
really something to be pittied from seeing her grandparent pick up and
continue after losing sight.  But, The roommate who was diagnosed did not
know a single blind person before she met me, and although I have shown her
I personally don't fit the poor, helpless blind person stereotype, she still
perceives blind people at large in that way.  (For example, rather than
independent she calls me "high functioning" and has a tendency to help at
times because she thinks it's what I need).  I don't really talk about
things like blindness philosophy with my roommates, so I didn't place much
of an emphasis on really teaching otherwise.  I might have said things here
and there about how I'm not as independent as some other blind people, or
that a lot of other people are independent too, but I never really dispelled
the myth that I was extraordinarily high-functioning for being blind, or
that other people were not lower in functioning because of their blindness.
I just figured that I should do what I normally do, politely deal with the
unwanted helping, and go on with the hope that I would be a good example.  I
really did not give it a lot of thought beyond that.      

First I tried to empathize with her, but I am finding that as a congenitally
blind person, it is difficult for me to really empathize because I have
grown up with my parents always being honest about my vision, the potential
for total blindness at some point, and positive role models to show me that
should that happen I can still lead a fully happy and productive life.  My
parents also worked to develop blindness skills I can use, and as an adult I
have even taught myself a few adaptive techniques to pick up where my mom
and dad left off.  But, I do not understand the sudden shock of receiving a
diagnosis later in life, nor do I not have the slightest idea of how I would
continue should something happen to my vision, as I have needed to make
changes to accommodate decreases before.  I also realize that seeing someone
else use adaptive techniques is far different from imagining yourself doing
them.  I can understand that she might be thinking, "How will I match my
clothes?," or "how will I cook?," even though she sees me do both things and
others on a daily basis.  These things might seem like relatively small
things to me as I know systems for dealing with them, but to someone who
doesn't know they could seem like impossible tasks to perform without sight.

This has been especially weird for me, as she has been condemning blindness
so strongly the past few days.  I know that her experience is totally
different, as she has had full sight to this point in her life and has those
negative perceptions to go off of, but I have trouble separating her woe
statements from statements about me or blind people in general.  I do not
want her to continue pittying herself, nor do I want to force positive
philosophy on her because she isn't ready for it.  This is still very new
for her and I know I need to give her some time to work through some of
these issues on her own.  However, I also feel that if she really does have
these very strong, negative feelings about blindness, that the sooner she
gets rid of them the better she'll be should further vision loss occur.  I
feel like the longer she believes blindness is to be pittied, the more
likely it is that she will feel that she is to be pittied, and that will not
make coping with her condition any better.  It doesn't help that the family,
in their ignorance, seems to be pittying her as well.  As we know, that is
probably the last thing she needs, which is why I think giving her a
positive view of blindness will be really important.    

Any thoughts on how to find a happy medium?

Kaiti Shelton

University of Dayton---2016

Music Therapy Major, Psychology Minor, Clarinet

Advocates for Sexual Assault Prevention (ASAP), Vice president

Ohio Association of Blind Students, Secretary

NFB Community Service Group, Service Project Committee Chair

Sigma Alpha Iota-Delta Sigma, Usher Coordinator

UD Music Therapy Club

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