[nabs-l] How can NFB better include people with multiple disabilities?

[Kaiti Shelton]

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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-- 
Kaiti