[nfb-db] nfb-db Digest, Adjusting and A Few Questions
Marsha Drenth
marsha.drenth at gmail.com
Fri Nov 1 16:29:09 UTC 2013
Cathy,
Thanks for the backing. I like to think that some of my social work classes are soaking in. LOL
I am interested in hearing more about the total immersion program you attended to learn ASL. Where was this program? How long were you there? Any details you would like to share, would be interesting.
Thanks,
Marsha drenth
Sent with my IPhone
On Oct 31, 2013, at 10:37 AM, Catherine Miller <guillcat at gmail.com> wrote:
> Doctors' staff are busy, and if they don't truly undeerstand what you need, they will brushhhhh you off. They are accustomed to knowing everything health-wise, but it will be up to you to teachh them about deaf-blindness. this is a tall order given your weakened emotionaal state brought on by the stresses of accepting the tremendous changes demanded by your senses during this time. An idea might be to send a letter explaining what your needs will be, making sure your dooctor reads it before your scheduled appointment.
>
> Congratulations on your decision to learn braille. I'm sure you knoow that it will open many new avenues of communication to you. It can be an arduous process, but try to read, learn, and practice everry single day to hasten the process. It will bring many rewards.
>
> I attended a total immersion program to learn ASL. All my teachers were Deaf.. Based on their prior experience, they urged me to learn the signs first, and to use tactile methods after I learned the signs. April, this waas a profound waste of time for three months of my life. I felt so stupiddbecause I could not follow the signs. They ddid not seem to realize I could see only movement. Finally I switched to tactile reception, and my learning rate became airborne. I had been standing on my head to see the signs, when all Ireally needed was a light touch of the fingers to assist my residual vision. Today I have lost more vision and mut rely totally on tactile; but my message is that no one knows better than you what you can and cannot see or hear.
>
> Finally, I want to address Marsha's disclaimer. I am a trained counselor, and everything she said is accu April: First I want to comment on your need to coommunicate optimally with your doctors. I urge you to embark on a new paradigm based in the assurance that you are totally within your rights to demand andd expect that your health care proffessionals are obligated to provide the form of communication that accommodates your individual needs. Visit your doctors with an advocate until you are strong enough to do it alone. Your advocate can be a good friend, a family member, or someone who understandds what your needs are, as long as it's someone you believe can stand behind you and not back down
>
> I'm sorry, but my software needs updating. It has switcheed the position of the first and last part of this email, and if I try to repair it, this email won't get sent. Know that we care, and that we are very glad you have found us here. We gain strength from your experience, April.. We hope you will continue to share with us.
>
> Cathy Miller.
>
> Sent from my iPad
>
>> On Oct 30, 2013, at 7:00 AM, nfb-db-request at nfbnet.org wrote:
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>> Today's Topics:
>>
>> 1. Re: montana convention (Marsha Drenth)
>> 2. Re: Adjusting, and a few questions (Marsha Drenth)
>> 3. Re: montana convention (maurice mines)
>> 4. Re: nfb-db Digest, Vol 57, Issue 12 (DELCINA M BROWN)
>> 5. Re: Adjusting, and a few questions (DELCINA M BROWN)
>> 6. Re: nfb-db Digest, Vol 57, Issue 12 (Sheila Leigland)
>> 7. Re: Adjusting, and a few questions (DELCINA M BROWN)
>> 8. Re: Adjusting, and a few questions (MemberService)
>> 9. un believable (heather albright)
>> 10. Re: nfb-db Digest, Vol 57, Issue 12 (DELCINA M BROWN)
>> 11. unbelievable (Janice Toothman)
>>
>>
>> ----------------------------------------------------------------------
>>
>> Message: 1
>> Date: Tue, 29 Oct 2013 16:22:05 -0400
>> From: Marsha Drenth <marsha.drenth at gmail.com>
>> To: NFB Deaf-Blind Division Mailing List <nfb-db at nfbnet.org>
>> Subject: Re: [nfb-db] montana convention
>> Message-ID: <A10D0778-4FA7-4972-B92E-CF5258689BBE at gmail.com>
>> Content-Type: text/plain; charset=us-ascii
>>
>> Sheila,
>> Congradulations on the new board position. I am happy to hear that the ICC presentation went well. But sorry to hear that you didn't get to formally gather a commiitee or division. It will all come in due time. Your on the right track though.
>>
>> This brings up another very good point, how many deafblind persons are on state boards? This would be an interesting fact to know. Have deafblind persons been excluded from the boards? I would hope not intentionally. And if we as deafblind persons can get on the state boards of affiliate would this increase our efforts. Of course I am not suggesting this just so we can increase the deafblind issues, but in general. Anyone who is elected to a board, must have the greater state affiliate in mind.
>>
>> Marsha drenth
>> Sent with my IPhone
>>
>>> On Oct 29, 2013, at 2:18 PM, Sheila Leigland <sleigland at bresnan.net> wrote:
>>>
>>> Hi a gentleman from I can connect spoke via skype at our state convention and the presentation was excellent. I have also been elected to the board and am second vice president so I'm hoping to influence and encourage positive feedback in our state concerning deaf blind issues.I didn't get to speak about forming a committee about these issues but hope to be able to bring this before the board sometime in the near distant future.
>>>
>>> _______________________________________________
>>> nfb-db mailing list
>>> nfb-db at nfbnet.org
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>>
>>
>> ------------------------------
>>
>> Message: 2
>> Date: Tue, 29 Oct 2013 16:40:20 -0400
>> From: Marsha Drenth <marsha.drenth at gmail.com>
>> To: NFB Deaf-Blind Division Mailing List <nfb-db at nfbnet.org>
>> Subject: Re: [nfb-db] Adjusting, and a few questions
>> Message-ID: <C57D6EB0-F39B-4D88-8EA4-A0FBF119E529 at gmail.com>
>> Content-Type: text/plain; charset="us-ascii"
>>
>> April,
>> I don't have an answer for the doctor forms part of your post. I do want to responde to your post about your denial of your hearing and vision loss.
>> The loss of any sense can be hard, some of us deal with it in different ways. When a person deals with the loss of two senses, it is doubly hard. Its a griving process, and denial is one of those stages.
>> In my experience, taking action, getting involved, meeting others, learning, helps the process along. The reason I say this is, again in my experience, over the last two years I have lost 80percent of my hearing. I was blind all of my life. I swing back and forth from being absolutely frustrated to sad to acceptance. Getting involved, learning new skills, talking to others, asking questions, taking action, all give your mind, body and soul something else to work on. And even if that means one or two days you have to force the issue, of just getting out of bed, or getting out of the house, or making a call, or learning a new skill. Of course a counselor who is trained in mental health and the adjustment of disability, can also help.
>> Your not the only onw in denial, in lossing your vision or your hearing. I know many other deafblind persons who struggle with this on a daily basis, some shut themselves into a house, others do something about, and then a majority of us, are some where in the middle.
>> I wish I had some great words of wisdom, its a one day at time thing.
>> I am sure if you keeping on posting about this, you will find that your not alone. Which can help that denial too.
>>
>> Here is my disclaimer, I am not a counselor, but a social worker. So my advice above is not official.
>>
>>
>>
>> Marsha drenth
>> Sent with my IPhone
>>
>>> On Oct 29, 2013, at 3:23 PM, April Brown <aprilbrownwrite at gmail.com> wrote:
>>>
>>> Hello,
>>>
>>> Until a year ago, I mostly ignored my low hearing. I've worn a hearing aid for years. A year ago, my vision suddenly failed drastically. Obviously, it was never good to begin with either, and I never did learn to read lips. I still don't have an official diagnosis or prognosis.
>>>
>>> Both of these issues have caused me issues in the past. Even as my vision fails, and my eye hurts constantly, I still comprehend better by seeing and reading. I intend to learn Braille in January. (Novemeber is a busy month for writers, and December is busy with in laws).
>>>
>>> Many, many years ago, in college, I attempted to take a sign language course. I didn't learn a thing. All I ever saw was motion, and nothing that made sense. At the time, I blamed it on the stress of my life. Now, I'm not so sure it was just stress. Still, I wish I had learned!
>>>
>>> In the meantime, and in the future, how do I convince doctors, and other professionals, that an email is better than trying to comprehend a phone conversation?
>>>
>>> To go along with another thread or two, a few times I asked for help on a blind list I had the "I can call you and talk you though it" response. Which is great, except, I don't really comprehend well on the phone, even from people I know. Especially if there is any background sound. I do appreciate the sentiment.
>>>
>>> I'm still very new in this situation, and yes, I'm partially still in denial, I'm sure.
>>>
>>> Thanks,
>>>
>>> April Brown
>>>
>>>
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>> ------------------------------
>>
>> Message: 3
>> Date: Tue, 29 Oct 2013 14:10:24 -0700
>> From: maurice mines <kd0iko at icloud.com>
>> To: NFB Deaf-Blind Division Mailing List <nfb-db at nfbnet.org>
>> Subject: Re: [nfb-db] montana convention
>> Message-ID: <2194663A-3DCE-4D37-A143-85D514B81EA8 at icloud.com>
>> Content-Type: text/plain; charset=us-ascii
>>
>> Graduations. Hope everything goes well for you in the future.
>>
>>
>> Sincerely Maurice Mines. Phone 360-524-0791. Work/school email, maurice.mines at pcc.edu.
>>> On Oct 29, 2013, at 11:18 AM, Sheila Leigland <sleigland at bresnan.net> wrote:
>>>
>>> Hi a gentleman from I can connect spoke via skype at our state convention and the presentation was excellent. I have also been elected to the board and am second vice president so I'm hoping to influence and encourage positive feedback in our state concerning deaf blind issues.I didn't get to speak about forming a committee about these issues but hope to be able to bring this before the board sometime in the near distant future.
>>>
>>> _______________________________________________
>>> nfb-db mailing list
>>> nfb-db at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org
>>
>>
>>
>>
>> ------------------------------
>>
>> Message: 4
>> Date: Tue, 29 Oct 2013 21:57:04 -0400
>> From: "DELCINA M BROWN" <delcenia at prodigy.net>
>> To: "Tracie Inman" <tracieinman at yahoo.com>, "NFB Deaf-Blind Division
>> Mailing List" <nfb-db at nfbnet.org>
>> Subject: Re: [nfb-db] nfb-db Digest, Vol 57, Issue 12
>> Message-ID: <BF7663D5797C4F738B20EA261C31AE88 at johne38069127c>
>> Content-Type: text/plain; charset="utf-8"
>>
>> First, let me introduce my self. My name is Delcenia Brown and I am a member of the National Federation of the blind of Cleveland, Ohio. I am new to this mailing list. Therefore alot of you I do not know and alot of abbreviation I do not know. It will be nice if sometimes some of you would spell out what you are talking about and it would be nice to know what state you are in.
>>
>> ?
>>
>> Tracy, I understand and appreciate what you are saying, your identity does not change because of your situation or how you handle certain settings. Taking advantage of what you have left is understandable. I am greatful for what little hearing and vision I have left. I also take advantage of that by reading with a CCTV when I can and using a fm system or pocket talker at the appropriate time.
>>
>> ?
>>
>> At the same time I wish someone had taken the time to teach me braille, sign language when I was younger. Now as I grow older and have other obstacles it is a struggle to learn braille. I still have no one to teach me sign language. So, yes, reminding Randy, that there are some deafblind that are hard of hearing and do not sign was a gentle response.
>>
>> ?
>>
>> Just recently, I have posted a notice asking if anyone in my state share my interests and got no response. However my state president does share my interest and I believe at the state convention which is to be held November 1 thru 3, 2013, the agenda does include information about the I can connect program.
>>
>> ?
>>
>> Now, the downside of things. I have completed my application and it was approved. I have had my assessment and I believe all of the equipment has been ordered based on messages that I have received. However, I still have not actually recieve anything as of today. This process started back in March or April. I am grateful for the possibility of obtaining the equipment, it is frustrating that it has taken so long and no one is returning my call.
>>
>>
>>
>> I gladly get on board!
>>
>> Delcenia
>>
>>
>>
>> ----- Original Message -----
>> From: Tracie Inman
>> To: nfb-db at nfbnet.org
>> Sent: Tuesday, October 29, 2013 9:06 AM
>> Subject: Re: [nfb-db] nfb-db Digest, Vol 57, Issue 12
>>
>>
>>
>>
>> Hi Randy: I hope you're doing well and AADB is growing stronger under your leadership. I wish you all the best always. Just a gentle reminder my friend that many many Deaf - Blind are hard of hearing (non sign speaking) blind folks. Randy, indeed since getting the two C.I.'s I'm guilty of using voice, Assisted listening devices and voice interpreters as opposed to using my signing, using interpreters, etc. I have switched to English. My excuses has been that my vision is going "bye bye" and depending on tactile scares me. In time, that may be my only option but for now I'm surrounded by hearing family and friends so I've gotten into a "comfort zone" with the success of my C.I.'s. What I'm trying to say here is, remember that, just because you might not observe the folks signing doesn't mean they're not Deaf-blind.
>> All the folks in the NFB Deaf-Blind division who are promoting ICC are Deaf-Blind. In fact, every one assigned to Operation Outreach (our outreach project to raise awareness of the ICC and the Deaf-Blind community requesting ALL 50 affiliates and the D.C. affiliate to form committees for the Deaf-Blind in their individual committee) - including our mutual friend Marsha drenth are Deaf-Blind.
>> Speaking of, hey Scott if you want to help please contact me or Joe Naulty. We could always use more helping hands. We got two projects going on at the moment and probably will start a third. You know about Operation Outreach. We've also started a committee on SSP issues. If you want to help us, we can always use another helping hand. I do believe the Deaf-Blind division is working harder than it ever has before. I dare to say that we've accomplished more in the last few months than we have in many years. The latest announcement we heard was that Scott Labarre (affiliate President of Colorado and a National NFB Board Member) has agreed to set up a Deaf-Blind Issues committee in the Colorado affiliate. We also heard that the President of the Alaska affiliate is Deaf-Blind. So climb abaord the NFB DB Express and lets get chugging along on this exciting adventure raising awareness of Deaf-Blind issues, ICC, and the need for SSP's. All are welcome aboard.
>>
>>
>> Best Wishes,
>> Tracie Inman
>> NFB Deaf-Blind Division
>> First Vice President
>> tracieinman at yahoo.com
>>
>>
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>>
>>
>> On Tuesday, October 29, 2013 8:08 AM, "nfb-db-request at nfbnet.org" <nfb-db-request at nfbnet.org> wrote:
>>
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