[blindkid] A Response

Wed Jul 16 03:13:22 UTC 2014

Hi Lalena,

I think your original post raised some good concerns and possible ideas for 
action.
I hope that you can move forward to implement some changes along with those 
who expressed a willingness and open mindedness to do so.

Its too bad you felt criticized about it. Your post was definitely 
respectful. As for Carlton's response, she was addressing the whole group, 
not just you. Many posts, for instance, can be interpreted as "us" versus 
"them".
I think her point was the discussion was getting heated and sometimes 
unproductive and hinted at toning it down.
True some may not understand or admit we need to be more inclusive. But 
that's going to happen in any group. I saw many listers be supportive and 
those are those to whom you should reach out to.

I think you have some valid concerns and I understand your reactions. Email 
is a hard medium to discuss hard and multi fascited issues so understandably 
your words may be misrepresented. But for all those that do that, there's 
lots of supportive people.

I hope you continue to find opportunities for your son and ways he can grow 
and learn with being blind. You might start him with small groups of kids 
and maybe one on one recreation where he can be taught hands-on. Activities 
such as swimming, yoga, running and  tandem cycling come to mind. He might 
even be able to start with a tricycle.
As long as he has some receptive language ability and does not mind being 
touched to learn the skill, I think its doable.
Good to hear you have a TR program in your area as this should help him stay 
busy.

The only thing I disagree with is you disliked the special issue on MD kids. 
Actually I liked the label because it was several articles grouped 
addressing MD and was labeled as such, and thus was easy to find. I do not 
see much wrong with highlighting a topic deserving of special attention; we 
have an issue on mobility, technology and low vision. One on MD simply 
highlights a special consideration of blindness just as we all use 
specialized technology or specialized mobility techniques.
There are articles sprinkled through the magazine as the editor indicated; 
just you may easily overlook them due to their labels.

Anyway, I hope you got some of the support and understanding you needed 
amidst the negative posts.

Sincerely,
Ashley

-----Original Message----- 
From: Lalena Fayre via blindkid
Sent: Tuesday, July 15, 2014 8:49 PM
To: blindkid at nfbnet.org
Subject: [blindkid] A Response

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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