[nfb-db] affiliate president's survey of deaf-blind

Tue Jul 16 13:48:46 UTC 2013

Hi all.
I am going to choose to believe that the higher ups within the
organization simply aren't educated on what an SSP is and does. There
is even some confusion within the deaf-blind community itself as to
the appropriate roles of an SSP.
As was already said, the role of an SSP is to help garner
independence, not to encourage dependence. Meaning, that the SSP sort
of acts as an interpreter and provides environmental information that
cannot otherwise be gathered through the loss of both hearing and
vision. Another common role is to do some sort of interpreting either
via voiceover, CART, ASL, or any other form of communication
facilitation that needs to occur.
One example I have is when I had a friend I work with serve as an SSP
for me when my hearing aids weren't working. I have the sign language
vocabulary of an 18 month old, but I can still speak and I can
obviously write. So my SSP went to an appointment with me and provided
me with environmental information about the area I was in and also
typed what was being said to me with a Bluetooth keyboard connected to
my iPhone, which also had my braille display connected to it. She was,
in no way whatsoever involved in the decision making process of this
appointment, but simply acted as my eyes and ears.
I think what blind people, as well as deaf people, generally  fail to
realize, is that they often compensate for the loss of one sense by
simply paying more attention to the others. Can't see a car coming? No
problem, just listen for it. Can't hear someone talking to you? Learn
to lip read. But we, as deaf-blind people, have a much more
challenging task of compensating for the loss of sensory information
because we lack varying amounts of 2 senses.
Anyway, sorry for the long email, but I hope this sort of clarifies things.

Scott

On 7/16/13, Danielle Burton <danielleburton94 at gmail.com> wrote:
> I don't think that the organization as a whole has that belief about
> deafblind people. however, there are always those few who will. I know for a
> fact that the director at BLIND, Inc. was concerned about the airline issue
> during resolutions because I was sitting with her because she was one of my
> mentors and she said it was an issue that needed to be worked on but the
> wording could have been better. So, I don't think the organization itself
> has this belief.
>
> Sent from my iPhone
>
> On Jul 16, 2013, at 8:53 AM, Sheila Leigland <sleigland at bresnan.net> wrote:
>
>> hi, I realize this isn't directly written to me but it makes me so sad.
>> Does the nfb really feel that way about those of us that have never gone
>> to an nfb center? I most certainly will call them on it if I find out that
>> this is their belief. I'm not going to allow anyone to inimply that I'm a
>> second class citizen for being deafblind any more than I will accept this
>> in the instance of fair wages for the disabled. If the nfb doesn't respect
>> my right to make choices for my life, then they aren't the right
>> organization for me to support.
>> On 7/15/2013 7:59 PM, Marsha Drenth wrote:
>>> Danielle,
>>> I am very glad to hear that mentors were so accomendating. I also think
>>> its great that you had fellow scholarship winners help. I am sure its a
>>> huge honor for you to have won a scholarship.
>>>
>>> I guess I am sstill a little leary. Here is the dilemna, the NFB promotes
>>> independence. How does a deafblind person who has to use the services of
>>> an SSP? does the NFB consider this as independent? In their defination, a
>>> deafblind person like that would not be independent, because that person
>>> was relying on the assistance of a SSP. Now I don't think it should be
>>> this way. See for some reason I am easily to say that because a person
>>> who has a moderator hearing loss, can still just be a blind person. But a
>>> person who is profoundly hearing impaired, is deafblind. In this case
>>> deafblind has a negative meaning. Because we are lower, we are not as
>>> independent, because we are not just a blind person, because we might
>>> need help from an SSP. Just like in any disablity group there are
>>> different levels. Blind persons who go to the NFB centers, are considered
>>> to be the upper level of blind people. Blind people who do not, of course
>>> then do not have the same training, or Ie Independence, whether
>>>  or not that person neds to go to a NFB center, but because of all that,
>>> that person is lower on the chain. Because a deafblind person has
>>> different abilities, needs to use different techniques, is not just a
>>> blind person, nor can go to a NFB center, that person is lower on the
>>> chain. Granted I am talking about those of us who are severely to
>>> profoundlly deaf, who need assistances more than just someone repeating
>>> speech. This same thing happens in the other disabled community. If you
>>> have one leg amputation, is considered to be more of a person, than a
>>> person who who must use a wheelchair because of a double amputation.
>>> Again, don't get me wrong, I do not think it should be this way. I am
>>> stating obversations, and my own opinion only. I think its these levels
>>> we should be breaking down.
>>>
>>> This is all way way beyound the fact that I won't ever win a scholarship,
>>> because again, in the eyes of the NFB I am not worthy.
>>>
>>> Marsha drenth
>>> Sent with my IPhone
>>>
>>> On Jul 15, 2013, at 8:28 PM, Danielle Burton <danielleburton94 at gmail.com>
>>> wrote:
>>>
>>>> Hi, Marsha. My name's Danielle burton. I'm one of the deaf-blind
>>>> scholarship winners. I'm not sure who the other one was unless they were
>>>> mistakenough and seen me a couple times. I am totally blind with mild
>>>> hearing loss in my left ear and moderate in my right. I wear hearing
>>>> aids for both ears. I do not use sign or an SSP but during Convention
>>>> sometimes my friend who was also a scholarship winner would have to
>>>> repeat what was being said because the speaker was too far away from me.
>>>> Also, when I was with my mentors I would explain that they needed to
>>>> stay close to me because I wouldn't hear them in crowds. They were all
>>>> very understanding and we would minstly stay in contact with each other
>>>> while using canes. They also made a point to find places that were
>>>> quieter to eat so that I could hear better.
>>>>
>>>> Sent from my iPhone
>>>>
>>>> On Jul 15, 2013, at 7:59 PM, Marsha Drenth <marsha.drenth at gmail.com>
>>>> wrote:
>>>>
>>>>> Janice,
>>>>> I am so very very hapy to hear about this. I remember hearing on the
>>>>> stream of the general session that Alaska, was deafblind. I also
>>>>> noticed that Dr. Mauer was not very nice in giving the ALaska person to
>>>>> respond. This made me mad. How inconsiderate. I know of 4
>>>>> federationists in my state who are DB, I know of other DB people, who
>>>>> are not NFB'ers too. I am glad that the search for more DB persons is
>>>>> being done. I am curious about the scholarship winners, who were the DB
>>>>> winners? How much or little hearing did they have? Did they need an
>>>>> SSp? I wonder if a person who was totally blind and deaf, who required
>>>>> an SSP would be given the chance to be a scholarship winner. I also
>>>>> wonder if there is some discimination in the scholarship process in
>>>>> this regard.
>>>>>
>>>>> Marsha drenth
>>>>> Sent with my IPhone
>>>>>
>>>>> On Jul 15, 2013, at 12:07 PM, Janice Toothman
>>>>> <janice.toothman at verizon.net> wrote:
>>>>>
>>>>>> Hi Everyone,
>>>>>> I wanted to let you know that the Deaf-Blind Division gave letters to
>>>>>> all 51 Affiliate president's or alternate delegates asking their
>>>>>> cooperation in identifying deaf-blind in their state.  We learned that
>>>>>> Alaska Affiliate president was Deaf-Blind and required an SSP to
>>>>>> during session to respond.  Also the Alternate Delegate for Delaware
>>>>>> was also Deaf-Blind.  There were several other states affiliate who
>>>>>> had spouses that were Deaf-Blind. Finally, two of the Nationally
>>>>>> Scholarship winners were Deaf-Blind.  While HKNC does compile a list
>>>>>> of Deaf-Blind in the United States, the division is specifically
>>>>>> looking for a Federationists, who are Deaf-Blind.
>>>>>> Janice
>>>>>>
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