[nabs-l] How can NFB better include peoplewithmultipledisabilities mental illness
Sam Nelson
nelsonsam68 at gmail.com
Wed Apr 2 19:44:54 UTC 2014
Hi everyone,
I'm not very much into the NFB in a lot of ways but one hundred percent
agree that there needs to be more connection between support/ services for
the blind and for those that have other disabilities along with blindness.
Personally I've seen this disconnect with blindness and mental illness. I
agree with everything Desiree said about therapists and them not
understanding how blindness impacts mental illnessor how mental illness
might affect blindness. I've also seen a lot of misunderstanding with
blindness profesionals not understanding how mental illness might interfere
with living on one's own getting a standard full time job ETC and so their
scope of services don't allow for anything outside what they perceive to be
normal.
I do want to give a shout out that I run an e-mail list called
blind-mentalhealth on yahoo. I've been running it since May and it is a very
close knit community and we all support each other day to day with these
struggles, providing encouragement and resources if possible and most of all
just our friendship.
Lastly I've heard of a center in NY that has the only psychiatric clinic
and daytreatment program for the blind. Does anyone know anthing about
this program? I've tried looking online everywhere for a contact person as
I'd be very curious to know more about the program and how they do things.
Sam
-----Original Message-----
From: nabs-l [mailto:nabs-l-bounces at nfbnet.org] On Behalf Of Beth Taurasi
Sent: Tuesday, April 01, 2014 11:22 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] How can NFB better include
peoplewithmultipledisabilities?
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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