[blindkid] A Response

Sarah Thomas seacknit at gmail.com
Wed Jul 16 01:53:53 UTC 2014


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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