[blindkid] A Response

[Lalena Fayre]

Agreed, in some ways it could serve as a mission statement. However, it was
a response to many messages and discussions that have stemmed from my
original amd subsequent messages. Thus the reason I had to point out the
portions which I felt were not accurate of the discussikn held.
 On Jul 15, 2014 6:17 PM, "Lynda Zwinger" <lyndaz918 at gmail.com> wrote:

> My impression was that Carlton's beautiful, loving, and thought-provoking
> post was not intended as a point by point answer to any single post or
> person and rightly so.
>
> It is a stellar piece of writing and could function as our mission
> statement, in my opinion. The conversation had progressed and morphed as
> all sincere discussion always does. And that post advanced it both
> analytically and philosophically.
>
> Thank you Carlton, for your leadership and your love.
>
> Xoxo
> Lynda
> Isaac's mom (and fellow Oxford comma advocate :)
>
> > On Jul 15, 2014, at 5:49 PM, 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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