[nabs-l] How can NFB better include peoplewithmultipledisabilities?

Beth Taurasi denverqueen1107 at comcast.net
Wed Apr 2 04:22:15 UTC 2014


Good ranting, Kaiti.  As someone who could fall under the thing 
Desiree described, someone whose parents get guardianship because 
they're sighted and "healthy", I had contemplated suicide because 
of that guardianship.  Because of that, my parents tried to take 
me off MySpace, but they will not take me off Facebook.  I am 
currently working to get a case against them because the 
guardianship is way too broad, and it affects lots of my man to 
woman relationships.  Currently, my relationship with my friend 
Blake, a guy from Arizona, is rocky, but yet deep down, I wish I 
could swoop Blake up and take him back here to Denver.  But alas, 
the guardianship prevents us from marrying.  To say that such 
persons are "nonpersons" or in the case of Orwell's 1984 
"unpersons" is wrong.  The way to say it in Newspeak would be 
complicated, and if such a newspeak word was invented, it would 
sound harsh.
Beth

 ----- Original Message -----
From: Kaiti Shelton <crazy4clarinet104 at gmail.com
To: National Association of Blind Students mailing list 
<nabs-l at nfbnet.org
Date sent: Tue, 1 Apr 2014 22:30:32 -0400
Subject: Re: [nabs-l] How can NFB better include 
peoplewithmultipledisabilities?

Hello all,

In answer to Carly's question about connections between the 
blind, (we
may call them "just blind" for the purposes of this 
conversation), and
those with blindness and other disabilities, or other 
disabilities
without blindness, I think organizational relationships are the
starting point to working interpersonally.  Much like the NFB is 
a
huge group of blind people, and is often used as a catalyst for
working interpersonally to accomplish tasks, other groups are the
same.  If we want to work interpersonally with the deaf, persay, 
then
we need to go where the deaf are and start forming relationships 
with
that group.  Once repore is established, people from the various
organizations can work interpersonally.  Darian might have 
phrased it
better than I did, but it's the same sort of view.

I was admittedly not around for that episode that Desiree 
described,
but I'm really sad to hear that it happened.  Especially since, 
as
Arielle pointed out, there are some pretty out there groups like 
the
car one.  I mean, it's okay for people to get together and 
discuss
cars that we can't even drive (yet at least), so their discussion 
is
purely based on mechanical and aesthetic knowledge of the cars 
rather
than a personal user experience, but a support group for blind 
people
who are seen as a minority for another reason is not okay?  To 
me,
that just doesn't make sense.

I'm not particularly religious, and probably would label myself 
as
unitarian even though I was raised catholic if I had to label 
myself
at all, so I realize my personal views on things of that nature 
are
more liberal than the views of others.  However, conservatives 
aren't
always going to be happy, just as liberals aren't, and it is 
important
that we compromise.  I was not under the impression that the NFB 
had
any religious affiliation, and even remember asking someone what
Invocation was, because I really didn't know the term.  Even in 
this
light, why is Christianity made such a prevalent part of 
convention?
What about those who practice Islam, Judism, or anything else?  I
would hate for a majority faction within the NFB to shun double
minority members, because after all, we're all minorities in the
greater world, so to pretend that those who are different from us 
are
less valuable or don't deserve the right to organize a group to 
suit
their unique set of needs or circumstances doesn't seem right.
Sorry for the rant.

On 4/1/14, melissa R Green <lissa1531 at gmail.com> wrote:
 Arielle once again.  You are so right!  I also hope that will 
never happen
 again.
 Another way to look at this is, many devisions get started and 
then they
 just fall by the waist side.  Noone will keep it going.  IMO the 
devisions
 are started by people that have to be in the spotlight and be 
the darling of

 the Federation and the devision suffers.  The same happens with 
chapters and

 state devisions.  Then everyone is shaking their head and 
wondering what
 happened and why this person didn't work out.  I could give 
examples of
 backing the wrong person.
 Finally, I always felt badly for those children who were born 
and grew up in

 the federation.  They have a lot of pressure on them to be the 
darling of
 the federation.  Have a blessed day.
 Best Wishes
 Melissa R. Green and Pj

 ----- Original Message -----
 From: "Arielle Silverman" <arielle71 at gmail.com
 To: "National Association of Blind Students mailing list"
 <nabs-l at nfbnet.org
 Sent: Tuesday, April 01, 2014 5:37 PM
 Subject: Re: [nabs-l] How can NFB better include people
 withmultipledisabilities?


 I too was at the NFB convention when the LGBT group wasn't able 
to
 announce its meetings. I'm disappointed this happened, 
especially the
 symbolic exclusion it represented, and hope never to see 
something
 like that again as long as I am part of the Federation. I 
completely
 understand the leadership's desire not to have a division for 
every
 special interest. However, we need clearer and more evenhanded
 criteria about what should constitute a division. It doesn't 
make
 sense to allow a division for car enthusiasts with its own 
annual
 activities and then not even allow an LGBT group to advertise 
informal
 meet-ups. We can't try to say we don't want LGBT because it's 
too
 politically controversial and then have religious invocations at 
all
 the general sessions. Has the general membership ever even been 
polled
 about whether to keep having these religious invocations? In 
other
 words, unless we want to be in an organization that reflects the
 president's or the board's interests and political views alone, 
we
 really need to have some transparency about how divisions are 
formed
 and what kinds of characteristics are meaningful enough to 
justify
 forming a division. Furthermore, as Darian pointed out, a 
well-run
 group can probably be just as effective without a lot of the 
hassle
 associated with keeping up a division. I know at least some of 
the
 folks in the LGBT group would have been totally happy with just 
a
 group, not a full division, but even that wasn't supported.

 Arielle

 On 4/1/14, melissa R Green <lissa1531 at gmail.com> wrote:
 what a good topic.  I know that there is a blind rollers list.  
But the
 devision never came into being.  I think that the committee of 
the under
 served is supposed to address these issues.  However this is not
 occurring.

 I agree that nfb has a primary focus of blindness.  Yet, we are 
a diverse
 population.  So I believe that the nfb needs to become more 
diverse.  I
 also

 believe that the leadership are going by their assumptions that 
if they
 have

 a devision dedicated to a certain grou that it will not do 
anything to
 assist blind people.  For example, years ago, a group came 
together and
 wanted to form a devision for blind gay bisexual and 
transgendered
 people.
 I was at the convention when doctor Maurer was reading the 
announcement
 and

 then he ripped it up in the middle of reading it.  Many people 
left the
 federation because they felt that they were not wanted and that 
the
 leadership assumed that it would be a devision strictly for 
social
 purposes.

 Many people are hopeful that the new president will bring many 
more
 changes

 and lots of diversity to the federation.  I am going to wait and 
see what
 happens.
 Have a blessed day.
 Best Wishes
 Melissa R. Green and Pj

 ----- Original Message -----
 From: "Arielle Silverman" <arielle71 at gmail.com
 To: "National Association of Blind Students mailing list"
 <nabs-l at nfbnet.org
 Sent: Monday, March 31, 2014 3:53 PM
 Subject: [nabs-l] How can NFB better include people with
 multipledisabilities?


 Hi all,

 I'd like to start a separate thread to address an important 
issue
 that's come up recently. It's clear that more and more blind 
folks
 today also have other disabilities. For several reasons, the 
number of
 blind people with additional disabilities is likely to increase, 
and
 more than that, the number of blind people with additional
 disabilities who are getting educated and involved in advocacy 
is
 likely to increase. I do think that, for the most part, the NFB
 centers do a good job of tailoring training to the needs that 
people
 with other disabilities may have, but I also think that we as an
 organization have far to go in order to truly appreciate the
 contributions of all blind people. I think it's particularly 
true when
 we think about including people with intellectual disabilities 
and
 mental illnesses. These kinds of conditions are stigmatized in
 general, but especially since our leadership has tended to be 
highly
 educated and to stress academic excellence and consistent effort 
from
 the leadership, I can see how folks who have intellectual
 disabilities, mental illnesses or chronic health conditions can 
feel
 left out. I've known some blind folks who had trouble holding 
down
 leadership positions in the NFB due to the ups and downs of 
mental
 illnesses, for example, but who are still incredibly creative 
and
 passionate people with a lot of good ideas that are getting 
lost.
 Further, as several folks have pointed out, people with multiple
 disabilities can experience difficulties related to getting
 employment, education, etc. that the NFB hasn't really been able 
to
 help them with.
 I agree that NFB can't be expert about all disabilities, just
 blindness, but I think there is a definite place for more 
divisions
 and groups within the NFB that focus on other conditions. There 
is a
 deaf-blind division, but I have not heard many great things 
about its
 effectiveness. I have heard about efforts to possibly start a
 blind-rollers division, and it makes sense to me that blind 
wheelchair
 users might have unique concerns they'd want to discuss with 
each
 other. But to my knowledge such a division has not been formed. 
I
 would love to see a division for blind people with mental health
 conditions. This is a huge segment of our population, and there 
are
 probably unique concerns there. I am not sure if such divisions 
don't
 exist because the national leadership opposes them or if there 
just
 hasn't been enough interest or momentum to get them going. But I 
think
 having such divisions could help folks who have additional
 disabilities obtain leadership positions within the 
organization, and
 also to provide a vehicle for collective action and education 
about
 issues affecting these groups specifically, even if the NFB as a 
whole
 should just focus on blindness. I hope that makes sense. I would 
be
 interested in other suggestions from you about how members with
 multiple disabilities can feel more valued. While there is 
something
 to be said for going ahead and running for leadership positions 
in
 order to change things, change also needs to come from the
 organization as a whole if folks with multiple disabilities are 
going
 to be elected and welcomed in these positions.

 Best,
 Arielle

 On 3/31/14, Steve Jacobson <steve.jacobson at visi.com> wrote:
 Joe and others,

 It is not my position that anything said about the NFB that is 
negative
 is
 wrong.  Organizations are made up of
 human beings and we are not perfect so our creations are not 
likely
 going

 to
 be perfect.  Still, some of what one
 person may seem as wrong  isn't so much a matter of right or 
wrong as
 perspective and opinion.  We embarked a good
 while back now on an expansion that has resulted in the need to 
raise
 more
 funds than we used to have to raise.  I
 do not think I am alone among NFB supporters in recognizing that 
this is
 a
 risk.  When you look at our budget and
 that of the ACB and then compare legislative successes as you 
did, Joe,
 it
 is certainly clear that legislative
 successes are not
 proportional to one's budget.  Whether I completely agree with
 legislation
 ACB passes or not, I recognize that the
 ACB has made contributions.  However, I have felt for some time 
and I
 feel
 particularly more so now that our
 problems can't be solved by legislation alone.  Let's take
 accessibility,
 for example.  There is a lot of emphasis
 on getting more legislation passed that will force software to 
be
 accessible, for example.  I happen to believe
 this is necessary, but it isn't going to make everything better 
for us,
 particularly on the job, all by itself.
 If we are going to make any serious gains, we need to understand 
the
 limits
 of current technology and explore ways
 of getting information that is new.  I am not one who got all 
excited
 about
 being able to drive a car, although I
 certainly hope that blind people can do that at some point.  
However, I
 got
 very excited about the fact that as a
 result of looking at the problem, we experimented with a number 
of ways
 of
 getting information that had not been
 explored before.  A significant portion of our budget went into 
the KNFB
 reader.  At the time, it was something
 nobody was doing, and it was a moving experience when I held up 
a KNFB
 reader to the lists of registered people at
 a national convention that were just hanging from a crossbar and 
have it
 start to read the content.  There have
 probably been over a thousand kids who have attended science 
camps of
 one
 kind or another through our efforts.  We
 have been able to sponsor other gatherings as well for blind 
lawyers,
 teachers, and major players in the
 technology field.  We couldn't have done any of this in the 80's 
or
 90's,
 and much of this would not have been
 done even now if we hadn't tried it.

 So what's my point, I'm not saying anything new, you know all 
this.  My
 point is that a lot of this is about risks
 and perspectives.  We won't know for a long time if some of 
these
 efforts
 will make a difference.  Frankly, I am a
 believer that one learns almost as much from what doesn't work 
as one
 learns
 from what does, because if you make a
 mistake you can eliminate or refine that approach.  Will some of 
those
 thousand kids get into math or science
 because of what we did?  Is the OCR in the new HIMS product a 
little
 better
 because of what we did with the KNFB
 reader?  Will we see a really good reader on the iPhone?  Might 
we ever
 see
 a reader that could use artificial
 intelligence to interpret software on a computer screen instead 
of
 having

 to
 educate every person who writes
 software?  Will some of our efforts mean that there might be a 
way for
 us

 to
 control the Google self-driving cars
 because of some of the work we did on our own car?  I hope that 
at least
 some of the answers are yes, but at this
 point I can't really say.  What I do know is that the smaller 
dynamic
 grass
 roots organization that we were in the
 80's couldn't have had any affect on some of what I've listed 
above, nor
 was
 it the right time for that.  But it
 also means that we change.  Not only do we change, but we make 
mistakes
 as
 we adjust to change.  Joe, what you see
 as a downward spiral, I see as the challenges of change.  I'm 
not
 satisfied
 to say that it has to be that way,
 though.  We can and must learn how to do better, as individuals 
and as
 an
 organization.

 Joe, I think you are right that getting training at one of our 
centers
 won't
 miraculously make life better, and
 the marketing does sometimes imply that.  However, you are wrong 
to draw
 conclusions about such training based
 upon the marketing.  Discussing and exploring the uncertainties 
and
 challenges of seeking employment as a blind
 person is a big part of what is addressed at BLIND Incorporated 
here in
 Minnesota and I assume by our other
 centers.  Some of the point of such training is to encourage the 
idea
 that
 you have to have a set of tools to
 approach a given situation and not just one tool.  Still, we 
have to do
 more
 than run people through training.
 This is true of any single aspectof our challenges, though.  
Legislating
 that software must be accessible and that
 one cannot discriminate based upon a disability was and is still 
needed,
 but
 it won't matter much if we don't have
 training.  Legislation and even training won't matter all that 
much if
 we
 don't get a good basic education.
 Requiring that school districts teach braille won't fix that 
problem if
 there are no braille instructors in a
 given area.  You can't pick any one thing out and say that it 
can lead
 to
 success by itself, and you can't see any
 given issue as completely standing on its own.

 I feel that we are in a better position as an organization to 
impact the
 complex challenges we face with a larger
 budget than we were.  However, it is more important than ever 
that we
 understand where we are going and how our
 philosophy fits in.  The question of what can we change to 
address the
 challenges of the world and what do we need
 the world to change is more important than ever, and I don't see 
anyone
 asking questions like that outside of this
 organization.  With our strengths and our failings, I think our
 understanding of asking for help and looking for
 our own solutions is what has set us apart in my mind, and while 
it is
 risky, I think that branching out is a risk
 worth taking to try to have a wider impact.  We need the help of 
all
 members, though, to handle change.

 Best regards,

 Steve Jacobson



 On Sun, 30 Mar 2014 12:57:22 -0600, Jamie Principato wrote:

Arielle,
That was a very thoughtful and politically sensitive response.

Joe,
I am pleased to see I am not alone in making these observations 
furring
 my
 own relationship with the NFB. while I
 deeply respect the organization's history and truly appreciate 
the raw
 potential the organization has moving
 forward, the passion I joined with back in high school has 
turned to
 cautious cynicism. I don't think this
 perspective is bad, though. I think the NFB desperately needs 
members
 who
 can see past the smoke and mirrors of
 PR, and who are willing to discuss issues of blindness and 
politics in a
 no-nonsense way that isn't always easy to
 hear. It is a shame though when those of us less willing to toe 
the line
 and
 pander to those with political power
 are treated with hostility by some at the national level, and 
more still
 within our local chapters.

Sent from my iPhone

 On Mar 30, 2014, at 12:00 PM, Arielle Silverman 
<arielle71 at gmail.com
 wrote:

 Hi Joe,

 Thanks for sharing your experiences. I have not been following 
the
 Braille Monitor that closely but I can understand what you are 
saying
 about the increased emphasis on fund-raising. I have also felt 
like
 the national convention is turning into more of a carnival with 
all
 the exhibitors and prizes being given away, and much of banquet 
that
 used to focus on philosophy and NFB spirit is now taken up with 
prize
 drawings and the like.
 To be fair, NFB was stronger financially when we joined than it 
is
 now, and I understand that some national programs have been cut 
due to
 a decrease in revenue from what used to be steady reliable 
income
 sources. So NFB may be pushing fund-raising more, but the 
alternative
 could be a loss of programs and resources.
 I have not heard of anyone being blatantly turned away or 
refused
 membership in an NFB chapter. If that ever happens it is truly
 shameful. I do think that sometimes prospective members choose 
not to
 join because they perceive hostility from the organization or 
judgment
 of their lifestyle choices. I think part of that is perception 
only,
 and part of it is reality. The NFB is stereotyped as a radical
 one-size-fits-all organization, and new members expecting to 
find that
 could be especially sensitive to cues of hostility. However, 
there
 probably is some real lack of acceptance among certain segments 
of the
 organization, which, again, is unfortunate. I will say that I am 
not
 the most graceful blind person and was relatively unskilled when 
I
 first joined, and I still felt completely accepted. But I know 
not all
 of us are so lucky. I would encourage prospective members who 
have a
 negative experience to try again in a different chapter or 
division
 and perhaps they will find acceptance there. But at the same 
time,
 this is something we need to be sensitive to in the 
organization.

 Arielle

 On 3/30/14, Michael Capelle <michael.capelle at frontier.com> 
wrote:
 Hello all.
 This is why I am not apart of any "blind movement."  I live my 
own
 life,
 live my own philosophy, ETC.  I do not believe in a one size 
fits all
 mentality, which is unfurtunately what the NFB does.
 Thanks.
 Mike

 -----Original Message-----
 From: RJ Sandefur
 Sent: Sunday, March 30, 2014 11:51 AM
 To: jsoro620 at gmail.com ; National Association of Blind Students
 mailing
 list
 Subject: Re: [nabs-l] Success and Why I Left the NFB

 Joe, I agree with you. I had to attend both college, and 
Seminary
 without
 the NFB's help, although it would have been nice to have a 
mentoor.
 RJ
 ----- Original Message -----
 From: "Joe" <jsoro620 at gmail.com
 To: "'National Association of Blind Students mailing list'"
 <nabs-l at nfbnet.org
 Sent: Sunday, March 30, 2014 12:25 PM
 Subject: [nabs-l] Success and Why I Left the NFB


 2006 was the last year I attended a national convention. While 
there
 I
 was
 caught up in the ra ra of the movement and felt glad to be in 
the
 company

 of
 so many people who could relate to the challenges that awaited 
me as
 a
 recent college graduate. I left convention, finished up my 
summer as
 a
 counselor in Iowa, and set off for DC to begin my business with 
the
 real
 world. I would never take away someone's enthusiasm from 
attending a
 national convention or Washington Seminar or one of the weekend
 leadership
 seminars in Baltimore. They are very well-suited to boost a 
person's
 spirit,
 but I believe too many people fall through the cracks when faced
 with
 reality outside of those infrequent gatherings.

 To be fair, the organization is no different from any other
 nonprofit
 business. It needs money to sustain itself, and in turn it needs
 more
 members to help raise the money. Still, I found it rather
 disappointing
 that
 so much of the board meeting I tuned into listen to last summer 
was
 dominated by calls to raise money for this fund or that effort. 
I
 found
 it
 even sadder that a recent issue of the Braille Monitor, our 
monthly
 dose
 of
 inspiration, featured several articles just to the focus of
 generating
 more
 ways to drum up more financial support, but perhaps the most
 frustrating
 byproduct of this new NFB are the e-mails from so-called friends
 from
 whom

 I
 have not heard in years but boldly ask me to contribute to their 
NFB
 fundraising campaigns.

 In short, at some point the NFB embraced enterprise and forgot 
about
 the
 movement. Between 2006 and 2012 I went on to help lead 
development
 efforts
 for other nonprofits outside of the blindness field, also 
national
 in
 scope.
 They too made fundraising a priority, but it never felt like the
 top,
 or
 the
 only, priority. It gets tiresome when we focus on recruiting new
 blood
 and
 raising new money and forget about strengthening the members and
 resources
 we've already had.

 Nowadays I have the privilege of knowing some excellent blind
 professionals.
 I think they would do well in the NFB. They are smarter than I 
ever
 will
 be
 and have accomplished more than I may ever achieve, but they 
shun
 the
 organization because they were turned away or because they were
 never
 welcomed in the first place. It's something I should have kept 
in
 mind
 when
 I had my brief taste of leadership in the organization. I had 
too
 much
 of

 a
 mouth on me to ever be anyone's golden child, but I was reliable
 enough
 to
 get the job done. But, getting the job done should have really 
meant
 attracting and pulling in these men and women who could have 
made
 the
 NFB
 lots better, listening to new ideas, and most important, 
remaining
 true
 to
 the cause and not some multi-million-dollar institute we find
 ourselves
 incapable of sustaining.

 So, what does any of this have to do with the original post? I 
don't
 want

 it
 to ever be said I was a hypocrite. The leadership may as well 
know
 what
 I
 think of them, but more importantly, to the college kids on the
 verge
 of
 spreading their own wings, I want you to know the NFB banner 
will
 only
 guide
 your way so far. Take what's great about the organization and 
leave
 the
 political drama and marketing ploys behind. In the end it will 
be
 your
 own
 wits and talents that will earn your pay check. The NFB will 
never
 give
 you
 anything new. The philosophy merely helps you uncover what you
 always
 had

 to
 be successful. Anything could happen with the new NFB president, 
and
 I
 will
 be the first to retract my words if he is brave enough to 
reverse
 this
 downward spiral. You see, we no longer live in a world where the 
NFB
 is
 necessary for collective momentum. Technology has seen to that.
 Whether
 or
 not the movement sticks around largely depends on how badly we 
want
 it
 to
 exist.

 Is the ACB doing it any better? That's debatable, but you know 
what
 I've
 found from the people I've met on that side of the house? They 
seem
 happier,
 and that's something we can't seem to figure out in our camp. 
The
 few
 victories they celebrate they do with even less money. Let that 
be a
 lesson
 in financial management to you.

 I don't know what the hell I'm doing back here. I told myself I
 would
 never
 become one of those bitter former NFB members. My only goal was 
to
 provide
 different perspectives to the new generation of leaders coming 
up
 through
 the ranks. After all, if you never taste the real world, you 
have no
 business leading. That's like the teacher who teaches because 
they
 couldn't
 cut it, and believe it or not, I want to see more and more of 
you
 excel
 at
 whatever it is you want to do. The more of you there are, the
 greater
 our
 strength.

 Moving forward I reckon I'll keep my opinions to myself here 
lest I
 be
 the
 rotten apple that spoils the bunch, but in some lame attempt to
 answer
 the
 original question, my answer would be this:

 The characteristics of a successful blind person are humility to
 consume
 what they need to be successful, fortitude to turn away what 
will
 not,
 and
 wisdom to recognize the difference.

 Joe

 --
 Twitter: @ScribblingJoe

 Visit my blog:
 http://joeorozco.com/blog



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