[nabs-l] How can NFB better include people with multipledisabilities?
Beth Taurasi
denverqueen1107 at comcast.net
Tue Apr 1 09:43:21 UTC 2014
Hey, Kaiti. Since I had mental illness diagnosed officially at
nineteen, I had experienced some music therapy. I so wish I had
become a music therapist myself, I wish I could give back to the
disabled and so on. However, there's requirements that I could
have never surpassed at Florida State, which later got sued for
the inaccessible core curriculum and so on. WE know all about
it.
Beth
----- Original Message -----
From: Kaiti Shelton <crazy4clarinet104 at gmail.com
To: jsoro620 at gmail.com, National Association of Blind Students
mailing list <nabs-l at nfbnet.org
Date sent: Tue, 1 Apr 2014 04:12:27 -0400
Subject: Re: [nabs-l] How can NFB better include people with
multipledisabilities?
Hi all,
This is a great topic to converse about, and one I feel strongly
about
as someone who is going into a rehabilitation field.
I have noticed for a long time that the NFB philosophy seems to
be
boxed in. That is, when we talk about it in our conventions, it
is
always framed as "The philosophy of blindness," when really, it
is
something anyone with any disability can follow. I've said that
I'm
going to strive to teach it to my music therapy patients, whether
they
are fighting cancer, adjusting to an acquired disability, or are
otherwise chronically ill. Misunderstanding and misconceptions
aren't
just the problem with blindness, they're the problems with
anything
that is outside of the "norm," and I think we're doing wrong if
we box
it in to just talking about blindness. It does a great
disservice to
those with other disabilities who could benefit from it, as well
as
those who are blind with a comorbid disability.
I am set to give a talk about visual impairment to an intro to
music
therapy class next week, as they are finishing a chapter in the
textbook about sensory disorders and disabilities. Having read
that
book for that class last year, I know there are some things the
book
got right, and some things that I disagree with. It will be
challenging for me to correct the misconceptions the first year
students have been taught, but that is the same challenge deaf
people
face, and people with Autism Spectrum Disorders face, and people
with
mental illness face. I think that, although as the National
Federation of the Blind we don't necessarily have a right to try
to
gain as much expertese on these other things as blindness per
keeping
relevant, but we can realize that our philosophy and ideals can
be
bigger than blindness, and can be even further reaching.
I had a talk with a deaf guy last semester. He came to speak to
music
therapy club about deafness, and taught us some sign language.
Since
I couldn't see what he was signing, I was unable to grasp a lot
of
what he taught. Classmates next to me tried to help position my
hands, but they were busy trying to do the signs themselves.
I'll
admit that the communication barrier between the speaker and I
made me
a little frustrated, so after the meeting I went up to him and
explained my situation. I said that I had an interest in
learning
sign language so I could communicate with deaf people, but didn't
know
how to logistically pull it off. He taught me how to sign,
"Sorry, I
can't see you," so that I could first tell the deaf person I was
blind
(I didn't have my cane folded out when I was sitting at a desk
for the
presentation, so since he didn't see it he didn't know). Then he
thought a bit about how the deaf person would be able to
communicate
with me, since if they were unable to speak themselves pen and
paper
wouldn't work. The best he could tell me was that the finger
spelling
would do the job, but at least I would be able to do the signing,
which is more efficient. He said that would show the deaf person
I
had taken the time to learn how to communicate with them, even if
they
couldn't easily communicate with me, and at least I wouldn't have
the
frustration of tediously fingerspelling myself. It was cool,
because
afterwards he took a real interest in my notetaker and the
braille
display. It would be so cool if there weren't those separations
between people with disabilities, and we could all work for a
common
goal.
I know at conventions some deafblind people feel kind of left
out,
because all these blind people are whizzing past them and they
can
easily get disoriented in the crowds. I think helping the
deafblind
is a great start, but we do need to consider other disabilities,
and
combinations of disabilities with blindness as well. I don't
know if
I have an answer to how this can happen yet, but I think a big
chunk
of it is practicing what we preach. If we want sighted people to
know
the truth about blind people, and treat us as equals, we need to
do
the same for the deaf, those with Autism Spectrum Disorders and
Developmental Disorders, and those with mental illness.
Just my two cents worth... curious to see what others think.
On 3/31/14, Joe <jsoro620 at gmail.com> wrote:
Don't worry. My week is chaotic, so short post. One thing the
guide dog
division has done that I find neat is that they've become a
tangible
resource to fellow guide dog users. The way I understand it, you
can call a
hotline and get concrete assistance with advocacy, training
referrals, etc.
Perhaps mental health could be addressed in a similar fashion.
Peer
assistance could go a long way, because after all, who is going
to be in a
better position to help than someone who's been there?
--
Twitter: @ScribblingJoe
Visit my blog:
http://joeorozco.com/blog
-----Original Message-----
From: nabs-l [mailto:nabs-l-bounces at nfbnet.org] On Behalf Of
Beth Taurasi
Sent: Monday, March 31, 2014 7:32 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] How can NFB better include people with
multiple
disabilities?
On one hand, being dual disabled, blind and mentally ill, can
mean that
your
family can shelter you a lot and tell you you can't run for a
leadership
position. That's not right, and I think we need to do some
educational
campaigns that say that yes, we can lead. Alll this talk of
academic
excellence could lead to people being left out: people with
Turner's
Syndrome, Down's Syndrome, etc. Both have limits and one has an
educational
impairment along with it. We need to educate the people about
mental
illness in that it does not cause people to go "psychotic"
twenty-four hours a day, seven days a week. No, it does not
mean we are
all
experiencing delusional thoughts of grandeur. My parents
thought I was
delusional and placed me under a guardianship due to that and
their lack of
knowledge and understanding of the disorders I was diagnosed
with at 17 and
later at 19. There would've been better ideas on solving the
problems, but
with little knowledge, parents make decisions that aren't always
the best,
such as guardianship or incapacitation or placement in a group
home that
won't allow the person to talk with his/her friends.
Beth
On 3/31/2014 3:53 PM, Arielle Silverman wrote:
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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