[blindkid] NFB and Independence

[melissa R Green]

very well said Arielle.

Melissa R Green and Pj
Failure is not fatal, but failure to change might be



----- Original Message ----- 
From: "Arielle Silverman via blindkid" <blindkid at nfbnet.org>
To: "Sarah Thomas" <seacknit at gmail.com>; "Blind Kid Mailing List,(for 
parents of blind children)" <blindkid at nfbnet.org>
Sent: Monday, July 14, 2014 6:10 PM
Subject: [blindkid] NFB and Independence


Hi all,

In reading Lalena's point about the NFB's position on independence, I
would point out former President Jernigan's article titled "the nature
of independence" that is a prominent part of NFB literature. In it,
Jernigan describes times in his own life when he uses sighted
assistance, or assistance in general,
to get things done. While I will not claim that all NFB members have
the exact same view of independence, I know many NFB members,
including myself, who utilize assistance at times--including in the
airport. Providing a 1:1 aide isn't necessary for all blind kids, but
it could very well be needed for some kids--usually not because of
blindness (and I think a properly trained blind person could
competently assist a blind multi-disabled child in participating, so
it's not a "visual guide" that's needed, just a guide). It is truly
unfortunate if our members openly criticize parents for their choices,
and that is not something we should tolerate as an organization. But
please know that the inappropriate actions of a few individual members
should not represent the NFB or NOPBC as  a whole in its response to
the needs of multi-disabled members.

Respectfully,
Arielle

On 7/13/14, Sarah Thomas via blindkid <blindkid at nfbnet.org> wrote:
> You begin with a legitimate observation and then draw a conclusion that is
> way off base. I simply do not understand why you have a problem with
> successful blind people.  People from all walks of life have struggles and
> when they find ways to overcome those struggles, sharing their success and
> strategies is useful information for people with similar struggles.
> Providing examples that blindness does not mean incompetence is very 
> useful
> to the blindness community and humanity at large.  The NFB has fought for
> access to education, access to public facilities and is currently fighting
> for equal wages for people in sheltered workshops.  Those initiatives 
> affect
> all blind people--not just super smart ones.
>
> You say your child has a great school environment and you wouldn't have it
> any other way.  You say that your child has access to a recreation program
> for developmentally disabled kids and that the staff is open to listening 
> to
> ways to accommodate your child.  You are lucky.  I've been through many 18
> hour long IEP meetings just trying to get my son braille and/or accessible
> materials that he is legally entitled to. Schools have willfully denied 
> him
> access to an education. I've seen him rejected by programs for able bodied
> kids and disabled kids because he is "vanilla blind."  I can't arrange my
> life to live in the San Francisco Bay area so I looked for an organization
> that addressed some of the issues I faced as the parent of a blind child.
> NOPBC and NFB have helped my son and me with some(not all) of the issues 
> we
> have faced.  I don't expect them to solve all my problems and I've given
> back to the organization.  I do understand that parenting a child with
> multiple disabilities is very difficult but just because my child is 
> vanilla
> blind doesn't mean I don't face additional challenges that make my free 
> time
> precious.  Do I understand all of the challenges you face? No.  You seem 
> to
> think my life is easy--hubris.
>
> I'd be way more sympathetic to your plea if you asked for a way to add 
> more
> content for multiply disabled kids and offered some ideas about how this
> could be done than I am with your position that it is NOPBC's 
> responsibility
> to provide you content you want.  Like Holly said, we aren't experts in
> multiple disabilities.  Why is it my responsibility to go learn about your
> problems and provide you with information tailored to your needs?  What I
> see happening at NOPBC is people coming together to share their struggles
> and successes; people trying to raise the bar for blind kids.  Maybe you
> could offer to be a moderator for a parents of kids with multiple
> disabilities list.  Several people have said that they are members of 
> NOPBC
> and are parents of kids with additional disabilities.  Maybe you could
> nominate your son's teacher for teacher of the year.  The teacher who wins
> gets a trip to the convention and addresses the NOPBC.  People could learn
> about educating kids with with multiple disabilities.  Anything useful and
> educational would be an improvement over the attitude that "you owe me
> something and if you don't do it my way, you are wrong."
>
> I don't like everything that the NFB and NOPBC does.  I don't agree with
> everything that the groups say and do.  I take the useful parts and 
> discard
> those that don't work for me.  Waiting for or demanding that the
> organization change to suit my needs and opinions would be fruitless.
>
> Sally Thomas
>
>
> On Jul 14, 2014, at 6:51 AM, Lalena Fayre via blindkid 
> <blindkid at nfbnet.org>
> wrote:
>
>> Ashley -
>> I couldn't agree more with your day. The workshops and focus of the NFB
>> is
>> on the bright stars who go on to university and graduate school. I know
>> some of that is necessary because some blind people would never see a
>> highly educated, professionally successful blind person in their life.
>> But
>> I think they go over board and that attitude is spilling over to the
>> NOPBC.
>>
>> I'm all for self-advocacy as well as demanding accessibility and
>> accommodations, BUT too often the attitude is that this accessibility and
>> accommodations MUST result in total independent access. If things like a
>> visual guide or visual assistance is provided then it's a failure. Worse
>> the person who lacks the skills is seen as less successful as well. It's
>> like if you can't walk through the airport without visual assistance you
>> aren't a fully independent blind person. This attitude drives me nuts.
>>
>> When this attitude is applied to a parent/child situation it's so
>> painful.
>> I'm all for children being age appropriately independent but if a child
>> can't be then visual guide and/or assistance should be provided and the
>> child and parent shouldn't be looked down upon if they need this. Full
>> integration isn't always possible for some mild to severe disability
>> children who happen to be blind.
>>
>> My son does have severe disabilities for sure. I often say if he was just
>> blind this would be a cake walk. LOL He is biologically now 11 and is
>> developing at his own pace which is currently about 3 (but will change as
>> he grows). The city I live has a specialized recreation program for
>> developmentally delayed individuals. He does go to this in the summer but
>> the challenge there is the counselors don't know how to work with a blind
>> child. The good news is they are willing to be educated and quickly learn
>> that blindness doesn't hold him back.
>>
>> I would like to find a therapeutic rec program run by one of the blind
>> organizations around here. (I live in the SF Bay Area). They are great
>> for
>> blind and mild developmental disabilities. But can't accommodate more
>> modertate to severe disabilities. As other parents have said, I have to
>> pick and choose where my son can participate. I really do wish there were
>> more opportunities for him to be involved in programming for Blind kids.
>> But as you've said, that's for the superstars.
>> Lalena
>>
>> On Sat, Jul 12, 2014 at 10:44 PM, Ashley Bramlett
>> <bookwormahb at earthlink.net
>>> wrote:
>>
>>> Lalena,
>>> I'm sorry to hear you feel so isolated. As I said, I do agree nfb needs
>>> to
>>> address multiple disabilities more. I agree all the focus is on normal
>>> developing kids.
>>> I'm actually the child and my parents are the parents, btw.
>>> My dad also felt not all needs were addressed. And, no I have no other
>>> diagnosis, but we feel I'm LD in some respects and spatial deficits are
>>> here too.
>>>
>>> I've been lucky to graduate college given the rampant inaccessibility of
>>> software these days.
>>>
>>> My dad felt and still feels that NFb only has workshops for the bright
>>> stars who go to college and often grad school.
>>> Its as if blind kids have to do all this stuff and make straight A's to
>>> be
>>> normal.
>>> What about the kids who are lucky to make it through community college?
>>> NFb has no place for them, but some cannot, due to a variety of reasons
>>> ranging from academic deficits to advocacy skills to blindness deficits
>>> to
>>> simply failure to be accomodated.
>>> I know some kids who only got through community college, and no they're
>>> not nfb.
>>>
>>> Where will these kids, now adults, find jobs? its as if the organization
>>> does not care.
>>>
>>> Not everyone can get a grad degree and be a professional. Not everyone
>>> is
>>> cut to be a lawyer, teacher, It professional, or counselor.
>>> And I could rant about the inaccessibility of entry level employment but
>>> I
>>> won't. If you even get that BA degree, you will find most entry level
>>> jobs
>>> are too visual like scheduling appointments is often not doable do to
>>> the
>>> software issues.
>>>
>>> Those kids who are the bright students tend to stay in NFB and be
>>> leaders
>>> in nabs.
>>> But, if you are below average, the organization does not have a place;
>>> not
>>> as a kid or adult.
>>>
>>> Laleana as for your specific situation, it sounds like a severe case. He
>>> acts 3 and he is 11 you say.
>>> Is there any recreation for kids with disabilities in your area? its
>>> called therapeutic recreation. we have a TR division where I live.
>>> They should have some activities he can do. You also might find a mentor
>>> for him through Best Buddies.
>>> In terms of socializing, I'm not sure as most kids will not play with a
>>> child who acts much younger.
>>> My only thought is to get him to play with other kids with disabilities
>>> if
>>> possible. For instance high functioning autistic kids might be a  good
>>> fit.
>>> I know some of them. they tend to do things a little slower and may be
>>> receptive to playing with him.
>>>
>>> All blind and low vision kids struggle with socialization; I had few
>>> friends growing up.
>>> I certainly cannot imagine  what its like for you and your son.
>>>
>>> HTH,
>>>
>>> Ashley
>>> -----Original Message----- From: Lalena Fayre via blindkid
>>> Sent: Saturday, July 12, 2014 7:01 PM
>>> To: Blind Kid Mailing List,(for parents of blind children)
>>> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
>>>
>>>
>>> First I have to admit, I'm struggling with how to reply to individual
>>> messages that posted on this list. So any tips on how to do that is
>>> great!
>>>
>>> At first I was going to let most of the well-intended messages slide by.
>>> I
>>> didn't want to explain in detail why many of the suggestions and
>>> thoughts
>>> are just wrong. Worse some of the responses were just so inaccurate
>>> about
>>> how the national organization responds. But with Barbara's response in
>>> particular (and many of you who sent me private messages) I just have to
>>> respond more.
>>>
>>> So my son has no visual acuity. He is totally blind. He was adopted at
>>> the
>>> age of 5. At that time he had a development level of a 3-6 month old
>>> children. We knew of his blindness and due to my ex being blind, our
>>> experience in NFB, my ex working at CCB, attending multiple conventions,
>>> etc, I had few fears of his blindness and didn't have the misconception
>>> that blindness would hold him back in any way.
>>>
>>> I agree that for some families it is very possible for a school district
>>> to
>>> discriminate against blind children and even more so against multiple
>>> handicap children who are also blind. This hasn't been the case with my
>>> son. He is in a Braille enriched environment. I wouldn't allow him to be
>>> otherwise.  I wanted my son to "play" with the Perkins brailler. I
>>> wanted
>>> him to use the old Library of Congress tape recorders. I wanted him to
>>> have
>>> a cane. So I am not going to jump on the NFB bandwagon that of course
>>> the
>>> educational system is against blind children and keeping them
>>> illiterate.
>>> And honestly that has nothing at all to do with my original post.
>>>
>>> My post is about the programs of the NOPBC and the NFB. My post is about
>>> the shadow the MAJORITY of multiple handicap blind children are kept in
>>> by
>>> the very advocacy group that should be shining a light on them. As
>>> multiple
>>> people have stated, the MAJORITY of blind children now have multiple
>>> handicaps yet as I said the majority of programs, conference seminars,
>>> conference child care, etc. is geared toward fully functioning blind
>>> children. I'm not saying that there is no benefit to the general
>>> seminars.
>>> But I can't tell you how frustrating it is to sit in a seminar about
>>> your
>>> child going to college, or increasing age appropriate independent
>>> travel,
>>> etc.. I might as well sit there and cry feeling as if no one understands
>>> what it's like to have an 11 year old who is developmentally 3. Where
>>> are
>>> seminars on long-term care for your child? Finding places where your
>>> heavily disabled child can have independence? Things along those lines.
>>>
>>> And I hear the response - the NOPBC is a volunteer group, start your own
>>> group, start your own activities, etc. But talk about victim blaming. I
>>> throw my hands up in exasperation because how in the world can I find
>>> time
>>> to do that when I need to provide 24-hour care for my child? How can I
>>> start another branch of NOPBC when I'm dealing with life as a parent to
>>> a
>>> 11 year old who is developmentally 3?
>>>
>>> I love my son and I advocate for my son like no one's business. I have
>>> barked up many trees and been the squeakiest wheel possible, and it's
>>> worked. There are strides that have been made but the social isolation
>>> is
>>> what kills me the most. It is that need to belong and feel as if I have
>>> people in my corner who understand what it's like on a daily basis.
>>>
>>> I don't want the stares or the "tsk tsk" response when I ask for 1:1
>>> assistance for my son to participate in activities to the best of his
>>> ability. I don't want someone to tell me that I should have my son in a
>>> quiet corner when he needs it but basically be ignored the rest of the
>>> time. I don't want the stares when I go to a NFB or NOPBC convention. I
>>> don't want my son to be looked down upon because he isn't a fully
>>> independent blind child. I don't want to hear the gasps when I ask if he
>>> can have 1:1 supervision and hand-over-hand assistance. I don't want to
>>> be
>>> lectured as if it's my attitude or lack of Foundation philosophy that is
>>> the problem. I don't want to be treated as if I'm just another "sighty"
>>> parent who doesn't understand blindness and thinks that blind people
>>> should
>>> be coddled.
>>>
>>> All of these things are wrong. Totally wrong. But based upon past
>>> experience and reading the organization's materials, the problem isn't
>>> that
>>> there is a blind spot (forgive the pun) in the organization, it's that
>>> there is a problem with me.
>>>
>>> I feel empowered that I'm not alone. That I'm not the only parent of a
>>> multi-disable blind child who has felt this scorn. And I don't think the
>>> solution is to just leave and make your own organization, I think the
>>> solution is for the national office to focus on issues of multiple
>>> disabilities and blindness.
>>>
>>> I'm sure I've angered some of you. Seemed like a ranting lunatic but
>>> well,
>>> I'm human and I hope that my rant might just dislodge this notion that
>>> I'm
>>> not educated on philosophy, unaware that this is a volunteer
>>> organization,
>>> or haven't read enough books yet.
>>>
>>> Peace and love.
>>>
>>>
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>
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