[blindkid] A Response

Jill Fass jillfass at gmail.com
Wed Jul 16 01:22:19 UTC 2014


What is vanilla blind? Never heard of it before a few days ago.




On Tuesday, July 15, 2014, 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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