[Blindtlk] Medical Professionals misconceptions about blindness Was Non 24, Sleep Problems, and how our blindness weighs in

[S L Johnson]

Hello:

I think we all could go on forever about how the medical profession 
misunderstands the blind.  I don't know how many times over the years I have 
heard medical professions tell me I should not be living alone because I am 
blind.  Once when I was hospitalized the doctor assigned to me just kept 
saying "you are blind".  She said this every time she entered my room.  I 
got so mad I finally answered "yes, I have known that since I was born so, 
now let's get to talking about how  you are going to treat my medical 
problems".  She was a foreign doctor who had the attitude that anyone blind 
needed to be where someone could take care of them.  When I informed my own 
primary care doctor of this she made it quite clear that I was the most 
independent person she knew.  We then went to the patient advocate and 
insisted on a new doctor.

When I lived in Buffalo NY, I was employed at the Center For Independent 
Living.  We had training sessions with the University of Buffalo medical 
school teaching them what it was like to be blind,deaf have a physical or 
learning disability.  For the blind, we had glasses that would mimic 
different kinds of vision loss.  We had on display many adaptive aids and 
showed how they were used.  We blindfolded them and had them walk with us 
sighted guide, taught them how to guide us, show us to seats and get us 
through the examination process. We discussed the need for their staff to 
read all forms to us.  We recommended they allow patients to bring recorders 
to appointments if they needed to remember medical advice or treatment 
instructions.  I was the one who showed them about Braille, a long white 
cane and using a guide dog.  One year after I had suffered a serious back 
injury leaving me in a wheelchair, I showed them how a blind person in a 
wheelchair could use a cane or guide dog to still get around independently. 
They had known me for several years by then but were shocked at my 
independence in a wheelchair with the help of my golden retriever guide dog. 
The professors and students were always grateful for this wealth of 
knowledge that is not normally part of their education.  It is obvious from 
this discussion that much more education is needed.

Sandra
-----Original Message----- 
From: Sherry Gomes via blindtlk
Sent: Monday, January 11, 2016 9:16 PM
To: 'Blind Talk Mailing List'
Cc: Sherry Gomes
Subject: Re: [Blindtlk] Non 24, Sleep Problems,and how our blindness weighs 
in

I used to work in admission at Guide dogs for the Blind. We received many
calls from newly blind adults whose eye doctors told them to "go get a guide
dog". These blind adults had received no training, many never left their
home, they couldn't even walk down their sidewalk on their own. But their
doctors, who are in the business of sight, had no idea what to do with them
or how to advise them, so they'd just tell them to go get a dog. I had some
of the most emotional, on both sides, conversations with these people, who
were distraught and desperate. I'd give them advice, tell them where to get
assistance in their area, rehab agencies and such, emphasize the importance
of O&M training, tell them about the NFB even giving them the contact info
of their state affiliate if I could find it quickly enough. I knew GDB had
done a huge campaign to ophthalmologists, with brochures and stories, trying
to teach the docs that they can't just tell people to go get a dog. And I'm
sure the Federation has done that kind of thing too, trying to educate the
professionals. We still have a long way to go. sometimes, I'd get off those
calls and have to get up and take a walk for a few minutes and thank my
lucky stars for my incredible parents. Once in a while, some of those
callers came back, after getting blindness training and mobility and all,
but often they never called us back anyway. I still remember some of those
calls and hope those people got their training and are now living happy full
lives, running around with their long white canes, or with dogs from
somewhere if they prefer. But I certainly wanted to call every eye doctor
who told them to get a dog, and give them a good verbal shake up!

-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Mark Tardif
via blindtlk
Sent: Monday, January 11, 2016 7:03 PM
To: S L Johnson <SLJohnson25 at comcast.net>; Blind Talk Mailing List
<blindtlk at nfbnet.org>
Cc: Mark Tardif <markspark at roadrunner.com>
Subject: Re: [Blindtlk] Non 24, Sleep Problems, and how our blindness weighs
in

Pardon me, but it sounds like your complex really sucks when considering the

needs of tenants.  I am lucky enough to have bought a treadmill which I keep

in my apartment, and the person who sold it to me worked with me and
developed tactile cues on the numbers and other buttons I would likely use.
By the way, Sandra and the rest of us, this leads to another problem with
uneducated so-called medical professionals who incidentally don't appear to
live in the real world that we inhabit.  My former girlfriend and I were
living together and had the same so-called doctor and I found out from my
friend that the doctor had told her I was "recalcitrient" about exercise and

that my girlfriend should "do her wifely duty" in getting me to exercise
more.  This, without knowing that I worked fulltime and that getting to a
gymn regularly was difficult because transportation in our town really
sucked, and that once I got there I would likely have to wrestle with touch
screen equipment.  This was kind of the last straw with her and I quickly
found a real doctor, but I really was tempted to go after this witch-bitch
for what I perceived as ethical violations.  But it seemed easier to just
find another doctor.



Mark Tardif
Nuclear arms will not hold you.
-----Original Message----- 
From: S L Johnson via blindtlk
Sent: Monday, January 11, 2016 8:29 PM
To: Blind Talk Mailing List
Cc: S L Johnson
Subject: Re: [Blindtlk] Non 24, Sleep Problems,and how our blindness weighs
in

Bob,

I suppose a good exercise program could help regulate sleep.  You were very
lucky to have been exposed to physical activity.  I know I was not given the
chance once I lost all my vision.  I fought at least I could do gymnastics
and other things that could be done without sight but, my public school
refused.  After high school, I was not given access to the gym at my
college.  As many other blind adults, I cannot afford a gym membership.
Even if we do go to a gym, most of the equipment have touch screens and are
not accessible to the blind.  I live in a senior citizen housing
development.  We have an exercise room in the clubhouse.  Although when I
rented my house, I paid for the key card to allow me to enter, I have not
been able to operate any of the equipment.  The instructions are in a big
large print notebook for the low vision seniors and the equipment is all
touch screens.  I've tried to talk to management and the owners but they say
they do not have any way to give any access to anyone with no vision.  Oh,
by the way, all the house numbers and signs are in huge print and that is
supposed to meet accessibility requirements.  What about someone like me who
is totally blind?  There are not any tactile landmarks even allowing me to
know where I am in a maze of twisting winding sidewalks with no regular
corners or street crossings.  They even refused to obtain a talking sign so
I could find the crosswalk leading to the clubhouse.  So, now people can
stop wondering why so many blind people don't get enough exercise.  Now to
bring this back to sleep disorders, I know that a good exercise program
might help better regulate sleep but, it just isn't possible for most of us.
Sandra


-----Original Message----- 
From: Bob Hachey via blindtlk
Sent: Monday, January 11, 2016 8:00 PM
To: 'Blind Talk Mailing List'
Cc: Bob Hachey
Subject: Re: [Blindtlk] Non 24, Sleep Problems,and how our blindness weighs
in

Hello Chaim,
I hear you loud and clear about how badly the medical profession is in need
of educating when it come to dealing with us blind folks.
That is a shame about no gym class for something like two years of school. I
was very fortunate living in Reading Massachusetts. Our public school gym
teachers were very good about including me in gym classes. When the class
did things like Soccer, I lifted weights and ran the ttrakc with a student
volunteer. IN flag football, I played center, though it was hard to get the
hang of blocking an opponent. They put sounders on the basketball hoops and
I tried using a beep basketball but I had trouble trying to get the hang of
both sounds at once and tracking the ball.
I did calesthenics, gymnastics and wrestiling along with the group.
WE must be ever vigilant so as to ensure that all of our brothers and
sisters get proper physical education.
Bob Hachey


-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Chaim B.
Segal via blindtlk
Sent: Monday, January 11, 2016 6:54 PM
To: blindtlk at nfbnet.org
Cc: Chaim B. Segal
Subject: [Blindtlk] Non 24, Sleep Problems, and how our blindness weighs in

Hi Folks:

I have not posted on this list in a great number of months, as work duties
circumvented my opportunity to read as many messages from listserves as
before. I decided to start receiving mail from these nfbnet.org lists again,
because I think there is pertinent information out there I should be aware
of. Even if I end up running behind on digests, better to be informed.

When I think of the Non 24 issue, something entirely different comes to
mind. As was stated on this list a few days ago, many sighted people also
have sleep-related difficulties, which have nothing to do with blindness. My
own father, bless his memory, lost a job in his later days because he kept
falling asleep. Falling asleep on the job was the last straw which caused my
release from my previous job, but that was largely caused by stress on
account of a new order of rules-entirely different subject.

A good number of years ago, my older blind brother was diagnosed with sleep
apnea. To make a long story short, his doctor-ordered sleep study led to his
being prescribed a C-pap. Parenthetically, he was extremely overweight,
which may have been part of the cause of the sleep apnea.

I have been married, thank-God for six years and counting. Early on, I
discovered that my wife had an extremely serious problem with narcolepsy. I
don't want to make myself a laughing stock, but I'll say that she and I are
not exactly thin. I will spare unnecessary detail. I discovered on my own
that she had serious trouble breathing throughout the night, and was often
awaken by her gasping for air in her sleep. Recalling these symptoms from my
older brother, I took it upon myself to engineer her getting a referral for
a sleep study. Turned out, she also had sleep apnea. Like my brother, she
uses a C-pap, and has much more energy during the day. The sleep doctor (who
just retired) nearly insisted that she try Non 24. She and I were adamant
that this was not a matter of interest. Like a number of unfortunate sighted
folks out there, the guy was under the impression that blind people cannot
really move comfortably beyond their own space. He was, in fact, surprised
to find out how many  blind couples exist.  I am glad we had the opportunity
to set him straight. It bothers me that there is not a mandatory course in
disability awareness for doctors and nurses in medical and nursing school. I
think that anybody entering the medical field who may, at any point in their
career, treat a disabled person be notified concerning appropriate personal
etiquette in dealing with us.

I know that some of us bld do exercise and try to watch what we eat. Sadly,
a number of blind people don't. There are a number of reasons for this,
including in some cases fear among gym staff that we will get hurt on their
equipment, or their insurance does not allow it. My oldest (sighted) brother
pointed out that with a number of us not being able to see our own body
profile in the mirror, we don't realize how unhealthy we look in comparison
to other people around us. While he may have a valid point, my argument to
him is that from what I have heard, the majority of the US population is
indeed overweight. Be that as it may, you don't have to be overweight to
have sleep apnea. Maybe, a number of blind and sighted people alike have
sleep apnea, but are not being treated for it. Maybe a number of blind and
sighted people are not getting adequate exercise throughout the day and are
not eating right. Maybe, there are many factors involved.

I think that before doctors prescribe this "antidote", they ought to take a
person's daily factors into account. I also think that gyms, spas, and the
like, should be encouraged to run specials which encourage blind and
disabled folks to come and work out. I'll take it a step further. For those
blind people who attend regular mainstream school classes, there should be a
law which demands that any physical fitness instructor in a public
institution be given the means to include a blind or disabled student along
with the rest of the class.

On this note, I'll add one more comment. From mid way through my seventh
grade year through my freshman year, I received no gym instruction in my
local public school. Indeed, one reason I decided to attend the Ohio State
School For The Blind for high school was that I was told physical
instruction was taught there. During my sophomore year there, they did some
repairs on their gymnasium and there was a big ribbon-cutting ceremony. We
had been swimming in their pool in place of gym instruction. What happened
after the big fanfare? Some well-meaning folks decided that we had to have a
similar experience as sighted folks. So, they decided to teach us how to hit
a tennis ball with a tennis racket. It flopped! As soon as we were shown how
to do it and commanded to do so, the teacher(s) had to go show another blind
person the same thing. So, A would shove the ball out of his hand with the
racket, and have nothing to do until it could be retrieved. I felt it was a
complete waste. And, as  Mr. Robert Mills, one of the  best o&m instructors
in the country said, "This is a blind school! You students are blind! They
have a g d big beautiful gym! They should use it for what it is supposed to
be used for!"

Anyway, I'll be back tomorrow or next day on an entirely different subject.

Chaim

Chaim B. Segal
Contact Marketing Representative
Sinclair Community College
Dayton, Ohio

Every Man, woman, every boy and girl,
Let your love light shine, make a better world.

Daryl Hall And John Oates

Sent from my Braille Sense U2 Mini

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