[blindkid] blindkid Digest, Vol 123, Issue 24

[Lalena Fayre]

The issues of change or unhappiness happens in all groups as one point or
another. I too have said countless times for people to get involved and
advocate for change, work towards a solution, form a subcommittee or
working group. Sometimes it works and many times it doesn't work. The
reasons are many. Some, as are just complainers. But I don't think that is
the majority.

Most don't know how to organize a group of people to make a change. They
speak up about an issue to the leadership because obviously the leaders
know how to affect change. They are seeking guidance, not a brush off to go
start a committee yourself. They are asking their leadership to listen and
look at a situation differently noting that their might be a kink in the
armor of the group. Leaders worth their salt will be grateful to have
instilled enough trust in their membership to bring a problem to light
versus planning a rebellion and taking half the membership with them. Yes,
that is rather Machiavellian and I exaggerate. *LOL* But my point is that
dissention isn't BAD and it shouldn't be pushed aside with a "go form a
subcommittee" response.

The last option I think applies to a lot of special needs parents. I'm
frankly far too tired to work on a national subcommittee or working group.
I can't do it. I am a single parent, I work part-time because of the needs
of my sons, I have very few resources to care for him and honestly the hour
or maybe 90 minutes I get a day to myself, I want to be able to have some
respite. Yes, part of that is reading here and inputting where I can. Of
course. But I just can't do more than that. And it's not because I'm a
complainer and I expect the NFB to do it. It's because I'm realistic about
what one person can handle.

Finally, as an organization, I think we need to be willing to pick up the
slack for those in the trenches of heavy parenting. There are parents who
are further down the road from me who can spend time, create some
organization and research, who can share their stories. I'm grateful to
them. Some day I too will be further down the road with my parenting, I
will be able to share my story and lift others up. (though I do share and
lift up others when I can) But in the meantime I would hope that the
response wouldn't be "you should form a committee".

I look forward to sharing input when I can with the working group that has
formed from this discussion.
Lalena

 ----- 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 Fri, Jul 18, 2014 at 2:35 PM, Lalena Fayre <lalenas at gmail.com> wrote:

> Hi Arielle -
> I firmly believe there is a disconnect for some members of the NFB
> regarding independence and the usage of "sighted-guide." I have listened to
> and read the speech by Dr. Jernigan. It's a wonderful speech actually and
> he is right. Unfortunately though, there are many who have never heard that
> speech or have a misguided notion that using assistance (blind or sighted)
> means you aren't an independent blind person.  I have had blind friends who
> have tremendous guilt because they feel more comfortable utilizing a guide
> (sighted or blind) through an airport, across major streets, in shopping
> malls or other heavily trafficked, echo chambers. When we talk about the
> guilt part of it comes from the message that successful blind people don't
> need assistance. Sadly, this extreme also influences those kids who need
> assistance or are learning the skills. I agree that providing 1:1
> assistance isn't necessarily for all blind children and that if it is
> needed it's usually due to other factors beyond blindness.
>
> You are right in that the inappropriate actions of few isn't
> representative of the whole but when these actions happen at conventions or
> meetings it's hard to give the organization the benefit of the doubt.
> Lalena
>
> ----- 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: Monday, July 14, 2014 6:10 PM
> Subject: [blindkid] NFB and Independence
>
>
> Hi all,
>
> In reading Lalena's point about the NFB's position on independence, I
> would point out former President Jernigan's article titled "the nature
> of independence" that is a prominent part of NFB literature. In it,
> Jernigan describes times in his own life when he uses sighted
> assistance, or assistance in general,
> to get things done. While I will not claim that all NFB members have
> the exact same view of independence, I know many NFB members,
> including myself, who utilize assistance at times--including in the
> airport. Providing a 1:1 aide isn't necessary for all blind kids, but
> it could very well be needed for some kids--usually not because of
> blindness (and I think a properly trained blind person could
> competently assist a blind multi-disabled child in participating, so
> it's not a "visual guide" that's needed, just a guide). It is truly
> unfortunate if our members openly criticize parents for their choices,
> and that is not something we should tolerate as an organization. But
> please know that the inappropriate actions of a few individual members
> should not represent the NFB or NOPBC as  a whole in its response to
> the needs of multi-disabled members.
>
> Respectfully,
> Arielle
>