[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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