[blindkid] A Response

Fri Jul 18 01:48:31 UTC 2014

I couldn't agree more!

Thank you, 
Lynda
Isaac's mom

> On Jul 17, 2014, at 6:30 PM, melissa R Green via blindkid <blindkid at nfbnet.org> wrote:
> 
> I think that your aproach arielle is done in many facits of the NFB.  We 
> just don't hear about it.  It also could be that people don't want to take 
> on that responsibility of organizing groups, or they will compalin and 
> expect the Nfb to do it.
> 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: Tuesday, July 15, 2014 8:10 PM
> Subject: Re: [blindkid] A Response
> 
> 
> Hi all,
> 
> I have a brief comment again based on my experience with NFB's
> student division. When I was president of that division, folks
> approached me about a need to address needs specific to
> non-traditional students or to high school students. These are
> important subsets of the blind student population who felt the general
> NABS programming didn't always address their needs. My response was
> always to encourage such individuals to head up a committee or working
> group within NABS. I didn't see this as victim blaming. Instead, I saw
> it as an opportunity to empower people to synthesize information and
> advocate for non-traditional or high school students. I didn't think
> it would be appropriate for me, as a young graduate student, to
> pretend to be an expert on non-traditional or high school issues;
> instead, I wanted to empower members of those groups to step up and
> work on identifying the content they wanted to see featured in NABS,
> to organize their own meetings, etc. I think the NOPBC discussion is
> similar. When people suggest that parents of multi-disabled children
> help generate programs, I think this is meant as an acknowledgment
> that you are the experts on raising a blind child with additional
> disabilities and that you know best what kind of content would be
> appropriate. It's passing the power, not passing the responsibility or
> the blame, in my opinion. I have seen several members of the NOPBC
> leadership stand up and say they are ready and willing to lend their
> support. I have also seen Debbie describe several Future Reflections
> articles, featuring children with MD, sprinkled throughout the general
> issues of the magazine. I look forward to watching more progress
> happen in this area.
> 
> Best,
> Arielle
> 
>> On 7/15/14, Sarah Thomas via blindkid <blindkid at nfbnet.org> wrote:
>> My attraction to the NOPBC came about because the organization rarely uses
>> "experts" to inform parents about how to raise a blind child.  Instead,
>> parents who have been through the learning process volunteer to share 
>> their
>> experiences--techniques that worked and those that didn't.  They volunteer
>> their time to write articles, put on workshops and do a myriad of other
>> things that keep the information flowing.  There have been several people
>> who have stepped up to offer to work harder on issues relating to kids 
>> with
>> multiple disabilities.  It sounds like you have managed to do a lot of 
>> good
>> things for your son.  There are lots of ways you can share this 
>> information
>> and help other parents who may feel disenfranchised.
>> 
>> Sally Thomas
>> On Jul 16, 2014, at 8:49 AM, Lalena Fayre via blindkid 
>> <blindkid at nfbnet.org>
>> wrote:
>> 
>>> Because I was criticized for not providing an appropriate new title to my
>>> message so it would make sense, I just decided to create a new message.
>>> Anything to lessen combativeness is appropriate.
>>> 
>>> I want to point out a few things first.
>>> 
>>> 1. I have never said I have anything against successful blind people.
>>> Quite
>>> the contrary. I was married to a successful blind person for 13 years. I
>>> have met many successful blind people. I have absolutely nothing against
>>> a
>>> successful person.
>>> 
>>> 2. I don't think it's easy for the average person who has little
>>> knowledge
>>> of the blind to raise a "vanilla blind" child. Again, quite the contrary.
>>> I
>>> went into the adoption of my blind, MD son with no fear of blindness and
>>> few of the fears of him not being successful due to his blindness. In the
>>> school district I really encourage parents with a low-vision or blind
>>> child
>>> with positive philosophy. But I also understand that it's a grieving
>>> process that most parent's go through. But don't think that some how I
>>> believe you have it "easy". It's different, not easy.
>>> 
>>> The whole reason I wrote original isn't about getting specific help for
>>> my
>>> son. There is no burning question that I have regarding him. If there was
>>> I
>>> would ask the specific questions that I wanted help with. The whole
>>> reason
>>> I wrote was multifold:
>>> 
>>> 1. to point out that I don't see stories of kids like mine, who are blind
>>> with multiple disabilities. Yes, I read the special edition of Future
>>> Reflections with much interest. I lamented that these types of articles
>>> weren't sprinkled through out various editions. By making it a special
>>> edition it makes it seem like blind child with other disabilities are the
>>> minority when they aren't.
>>> 
>>> 2. to point out how the voices of the blind/MD parents are quieter and
>>> perhaps someone else feels as I do that no one else understands the sheer
>>> strengthen, challenge, and difficulty we face in not only racing a blind
>>> child (which is a challenge in and of itself) but a child with a scale
>>> from
>>> mild to severe other disabilities.
>>> 
>>> 3. to point out that as an organization we need to be aware of the
>>> weakest
>>> among us so we can work to strengthen us all.
>>> 
>>> When I read through Carlton's response I felt like I honestly don't
>>> really
>>> know how to communicate. Why? Well, let me break it down....
>>> 
>>> ----- Instead of hiding the hurt, we need to share these feelings – in as
>>> respectful a manner as possible. (Lashing out is not a fatal act, but it
>>> can cause others to feel defensive and end up slowing the healing we
>>> seek.)
>>> -----
>>> 
>>> Thus the reason I wrote my email. It was respectful but obviously it's
>>> been
>>> interpreted as lashing out and thus, that warrants the defensive feelings
>>> I've received.
>>> 
>>> ------ The most concerning portion of this communication, to my mind, has
>>> been the “us-versus-them” tone some of the conversations have taken.
>>> -----
>>> Perhaps it is the form, my poor choice of language, or some other factor
>>> but I never say this is an "us-versus-them". As I said earlier, one group
>>> doesn't have it easier than the other. However, it is different. And when
>>> the organization focuses predominantly on one over the other, that causes
>>> the "us-versus-them" attitude. When the issues of blind, MD-families
>>> warrants a "special" issue of Future Reflections, that sends the message
>>> that "these" are different than "us". We should be talking about all
>>> families. When an article is written by an expert, ask them to focus a
>>> 2-4
>>> paragraphs on the blind/MD-child or the blind-only child. This shows that
>>> both are considered.
>>> 
>>> ---- Apparently, some have criticized that my workshop, “Hands Off!”
>>> could
>>> be useful for all parents of all blind children. Exactly. That’s the
>>> idea.
>>> -----
>>> Yes, that is the idea. I wish the reverse could have been said for the
>>> non-blind/MD track. I've sit in countless workshops where the information
>>> is great but inapplicable to children with multiple disabilities. I've
>>> point blank asked how this technique could be adapted to suit all
>>> children,
>>> few have had answered. So in essence when I look at the workshops, I have
>>> to evaluate the like hood that this would be relevant to my child or if
>>> the
>>> speaker could answer questions about adaption.
>>> 
>>> Being hand's off is very important. You are right children are
>>> over-handled
>>> by adults and this is an issue that should be addressed particularly with
>>> "vanilla blind" children. But SOMETIMES MD-blind children need to have
>>> more
>>> handling by adults in order to be successful. Was this addressed in the
>>> seminar?
>>> 
>>> ---- Please note that the NOPBC is committed to continuing to offer
>>> workshops geared toward parents of children with multiple disabilities,
>>> including blindness/visual impairment. This commitment has been
>>> longstanding, and it will not waver. Our ability to improve in this area
>>> will be strengthened by a frank, constructive collaboration with parents
>>> of
>>> children with multiple disabilities, including blindness/visual
>>> impairment.
>>> Please do not accuse me of “victim blaming” because we have shown our
>>> commitment in this regard for many years.
>>> 
>>> I used the phrase "victim blaming" because many of the responses to my
>>> pointing out some of the areas that the NOPBC needs to shed more light on
>>> was that I should do it. It is my responsibility as a parent to a
>>> MD/blind
>>> child to create this focus within the NOPBC/NFB. This is removing any
>>> responsibility that the organization has to use their many resources and
>>> the wealth of professionals and street-proven parents, to give families
>>> who
>>> are struggling  a hand up. The message was very clearly that it is MY
>>> responsibility to lead the organization into this focus. THAT is victim
>>> blaming.
>>> 
>>> Also, I was then criticized because I have been an advocate for my son. I
>>> have used the knowledge and positive philosophy I have earned through my
>>> years in the NFB to encourage Braille exposure, even if he doesn't have
>>> the
>>> cognitive ability at this point to learn Braille, to have a white cane,
>>> to
>>> have an evaluation by the State blind school, to request that that team
>>> do
>>> a training for the remainder of his team, all of these things. The
>>> attitude
>>> was - well, you don't have any problems so what are you complaining
>>> about. I'm complaining because I know that not every family on this list
>>> who is facing raising a child who is blind or MD/blind has the gumption
>>> to
>>> say - "hey I need some support here."
>>> 
>>> The fact is I've been around the NFB awhile. I've seen the politics. I've
>>> seen the hushing of people who speak too loudly. I read through the many
>>> responses that misrepresented or misconstrued my words. And it just
>>> saddens
>>> me. Because the group of people who should understand are too busy with
>>> pride to express that maybe some things need to change.
>>> _______________________________________________
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>> 
>> 
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