[nabs-l] Introduction: T. Joseph and Jessica and All

[Carrie Gilmer]

Greetings Joseph and Jessica and all,

The NOPBC is creating new links and pages for our website. I have found that
early on for parents they find it beneficial and supportive to connect to
information about others with the same eye condition causes as their child.
I have had an unusually high (nearly a stampede) of families with children
who have albinism this past fall. In every case the families had been told
their child was either not "blind enough" to receive services at all beyond
some magnification or at least no Braille or cane services. Most of the
families had gotten previous information from NOAH which was very
discouraging towards Braille and cane use the use of the word blind. 

In creating pages for parents on similar eye conditions I am getting a
section on albinism. I am putting up "letters" to parents from people who
are already raising successfully (with non-visual techniques) a child with
albinism and blindness with low vision and also from people who have this
condition themselves. Additionally I have become aware of some of the unique
experiences to albinism with no pigment that those who have it experience
from the public. I hope either or both of you would consider writing a
personal feel "letter to a parent" (no longer than two pages)about your
experiences growing up and how you coped with these issues. If you are
interested please email me offlist at carrie.gilmer at gmail.com for details.

Any others: people who have gone through cancer treatments, prosthetic eyes,
eyes that have scarring and may have been teased from the appearance of the
eye, really any and all eye conditions that exist...including unknowns and
accident, I hope to have a page for each with personal experiences. If
anyone wishes to contribute please email me privately for more specific
details on how we want the letters written.

Sincerely,

 
 
Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc

-----Original Message-----
From: nabs-l-bounces at nfbnet.org [mailto:nabs-l-bounces at nfbnet.org] On Behalf
Of T. Joseph Carter
Sent: Thursday, January 01, 2009 9:59 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] Introduction

Jess,

Albinos officially rule, that's all I have to say on that subject.  *grin*

I've found the hard way that "visually impaired", particularly given a 
sunny day, meant that I wasn't terribly well prepared.  That's me though, 
I'm a little more sensitive to it than some.  Still, I was raised to be 
sighted, not blind, and when I couldn't see, I was usually afraid of the 
outcome.  Worse, I couldn't see a lot more than I ever wanted to admit, 
even to myself.

I found the NFB was largely willing to let me live in my delusion as long 
as I wanted to, but when I realized just how bad it was, they were the 
first and really the only support I had in my effort to do something about 
it.

I think there is much to be found in the Federation, though it's been my 
experience that I get out some function of what I put into this 
organization.  I've gotten more, to be sure, but an organization OF the 
blind cannot function without the blind who are its membership.

Welcome to the list, and hopefully to the organization as well.  We need 
more albinos to keep all of these pigmentationally typical people in line.

Joseph

On Thu, Jan 01, 2009 at 06:47:04PM -0500, Jessica Trask wrote:
> Hi everyone,
> I'm considering joining the National Federation of the Blind. I just  
> thought I would take a few minutes and introduce myself.
> My name is Jessica Trask. I'm a 28 year old female living in Watervliet  
> New York with my fiancee Christopher Reagan who is totally blind. I'm  
> visually impaired. Visual Impairment caused by Albinism. I'm currently  
> doing an Early Childhood Associates Degree through Ashworth University I 
> just started yesterday when I enrolled. I was involved with the American 
> Council for the Blind local chapter in my area as well as in Vermont and 
> Utah. I was also involved with the National Alliance of Blind students 
> which is the ACB'S student affiliate when I lived in Utah.
>
> -- 
> Jess
> Jessica Trask
>
> Email services provided by the System Access Mobile Network.  Visit  
> www.serotek.com to learn more about accessibility anywhere.
>
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