[Nebraska-senior-blind] NFB Seniors Division - Another story from our Blindness and Aging Literature Archive - Of Eggshells and A Living Room Rug

[Robert Leslie Newman]

Hi You All

 

This article comes from our NFB's flagship publication, The Braille Monitor;
July 2018 issue. And is authored by a name that you will see routinely
popping up on this list!

 

Of Eggshells and A Living Room Rug: Considering Informing the Senior Blind

by Lauren Merryfield

 

                From the Editor: We know that seniors comprise the largest
group of blind people in the United States, if not the world. Yet, compared
with other age groups of blind people, few pieces of literature exist to
give this group advice and support. 

Lauren Merryfield is a blind senior, and she shares encounters she has with
other seniors who have lost or are in the process of losing their sight and
how they and their families handled it. She tries to provide encouragement
and hope along with a few tricks and techniques to those she meets and
provides a senior's perspective of what vision loss and age can team up to
take from us. There's an old saying about old dogs and new tricks, but
Lauren is of the opinion that an old Federationist is a much different
creature. Here is what she says:

 

                In my intergenerational journey in life, I spend as much
time around people my age and older as I do with those much younger,
including those young enough to lie in my arms. I don't know how often
someone who is older will say to me, "I just don't see so good anymore."
They not only say it to me, but they will often let others know too.
Sometimes the person will rather quickly add, "But I'm not blind (or
visually impaired) like you." Making a distinction seems to be quite
important to them since they still identify as sighted. 

                Most people are not really informed enough to tell the
person that yes, they can still do most if not all of what they were doing
formerly. The person might need to learn new ways to do things, but the
people they say, "I just don't see so good anymore," to do not know any
better. 

                One lady I met on the train several years ago said her
family asked her not to cook anymore because one day she accidentally got
shells in the scrambled eggs. On another occasion she was informed that her
floors were dirty, and she had a dirty living room rug because she couldn't
see to guide her vacuum cleaner to get the dirt off. Believing that they
would find her home in shambles, they did not come over to visit very often
anymore. They assumed that the problem was blindness, when actually the
issue was that the woman had not been trained to function well as a blind
person because she was just in the process of losing her vision. Her family
thought that things would be a mess from now on, not allowing that she could
learn to adjust to being blind. 

                So, rather than banding together to learn how Mom could
learn alternative ways to continue cooking and cleaning, Grace's family
humiliated her by no longer allowing her to do so. Their blanket statement
was, "Mom, you're going blind. You can't expect to cook and clean anymore." 

                Almost afraid to ask, Grace nearly whispered, "Do you cook?
Do you clean your own home?" I told her that as a senior I don't do much
cooking now, and I have someone who comes in to clean; however, I did cook
and clean for many years. I explained that I could feel the heat of the
burner, I put pan handles to the side so they didn't stick out, I used
recipes in Braille or from the computer, and I labeled many items in
Braille. I further explained that I picked up my place by hand before
running the vacuum. I learned how to guide the vacuum so that I reached the
entire floor area, not missing spots as she said she did now. She said, "Oh!
You are so amazing." I explained that I was not a chef, just cooked on a
level commensurate with most average cooks. I was not a trained housekeeper,
so I probably did just an average job cleaning my place-nothing amazing.
However, I did inform her that there are blind chefs and blind
professional-level housekeepers out there. 

                Though there is an affiliate of the NFB in every state and
chapters in many local areas, and there are programs focusing on training
older blind people to adapt to blindness, often the information is not
readily available, and a helpful connection is not made. If those of us in
the NFB make a concerted effort to get the word out, many negative
experiences can be avoided when the person going blind gets proper
assistance. 

                One time I talked with an older man named Jeff. He used to
drive his grandkids out in the country and into the woods where they could
play. Sometimes they went down to the river to fish. When his vision started
to deteriorate, his children were afraid their own children would get hurt.
A tree could fall on them. They could fall in a hole. They'd get a fish hook
caught in their hand. They'd slip into the river and drown. The main point
was that Grandpa no longer had control of the situation; he could no longer
supervise his own grandchildren. It never occurred to them that those kinds
of things could happen to the children while supervised by a fully-sighted
person. They never considered that it would be important to let him find
other ways to take care of what his eyes could no longer do. 

                We hear quite often about the dreaded day when the car keys
are taken away from mom or dad because they can no longer see well enough to
drive or their memory is failing them. They often keep the vision-related
fears, worries, and pronouncements a secret to the rest of the family, their
friends and neighbors, and their pastor if they have one. Some families hide
their blind relative because they are ashamed.

                On the other hand, some people who are going blind do not
let their family and friends pull the rug out from under them. I met Pat, a
spunky eighty-some-year-old in a class I took not long ago. She said that
her family tried to short-change her life because of their fear. She said,
"They made my blindness all about them, when it is my blindness, not
theirs."

               She had taken the bus to class. Though rather slow, she was
learning Braille. Her kids had bought her a flip phone, but she went and
bought herself an iPhone. Although she struggled and struggled with it at
first, eventually she had it down. She figured out that the reason she
struggled so long was that in spite of herself, little fears kept creeping
in about, "Can I really learn this? What if I can't do this?" When she
noticed that I was using an iPhone, she proudly said, "Oh! I have one, too!
Looky here. Mine is just like yours." 

                I met Dr. Tom, as people called him, while waiting for a
baseball game to begin. He had seen my husband and me and decided to come
over to talk. He said he was a retired doctor, and at first his family
tended to think his life was "pretty much over." He said he had been an
independent thinker and doer all his life, and that wasn't stopping now.

               Dr. Tom figured out how to use public transportation; he
began receiving talking books from the Library of Congress; he continued
going to the gym, going out to movies, and he still loved to fish. When he
noticed that he was trying to look at something, he purposefully stopped
himself, thinking, "Now how can I do that with my eyes closed?" Often he
figured out an alternative on his own. He told me, "If you look for ways you
can't do something, then you can't. If you look for ways that you can do
something, you can." He said he went by that kind of rule throughout his
practice as a physician, and that wasn't changing now. 

                Much depends on the circumstances around the oncoming
blindness such as other medical or health issues, level of pain, becoming
easily flustered or being doggedly determined, the support systems around
them or lack thereof, whether the person is alone with their blindness or if
others are around in their lives. 

                Donna, a lady I met on the train, began talking to me
because she had a sister, Jackie, whose marriage was in trouble because the
husband, Don (still sighted) could not deal with his wife going blind. He
said that, "The lights went out in her life, and she's not the same person I
married." He resented driving her places, reading the mail to her, and
describing shows on the TV that were not audio-described. He felt like he
was doing so much for her, but she wasn't doing anything in return. I asked
him what his wife did to pass her time. He said she still knitted, read
Braille books, fixed their meals, washed their clothes, and kept the
furniture nice and clean, including making the bed. "She didn't do
anything?" I asked incredulously. I reminded him that those things Jackie
was still doing were ways she was contributing to her family.

               There is now an epidemic of younger families alienating their
parents and grandparents. Quite often, these older family members do not
even know their grandchildren anymore. Dr. Joshua Coleman, an expert in this
psychological phenomenon, holds weekly webinars for parents and grandparents
who have been shoved out of their younger family members' busy lives. 

                The hurtfulness of this is compounded when a parent or
grandparent loses their vision. They are put out to an even further pasture
than they were already in. These families do not want to be inconvenienced
by their older family members. They don't want to feel obligated to help.
The idea of their family member gaining independence rarely occurs to them.
They feel better if the older blind person is in some type of facility,
receiving assistance from outside the family, no matter how expensive it is.
Though in the past, grandma or grandpa would live with the younger family or
switch back and forth between them, now expensive retirement centers are so
full that there are waitlists to get in. 

                Nearly everyone I've met or heard about who has gone from
fully sighted to blind seems to agree that going blind is difficult, scary,
and sad. They mention how the blindness affects their family life and how
life in general is now more difficult. Many of them do not identify as
"blind" strongly enough to join us in the NFB. Some say, "Maybe I will when
I lose the rest of my vision." Often they allow their lives to be more
difficult, scary, and sad than they need to be. 

                Because of the lack of a connection between seniors losing
their vision and those of us who know about blindness, it is good for us to
have print information available for sighted families and friends. However,
it is also important for us to have accessible information available to
those in the NFB who lose vision when they become older. The transition can
be made much more smoothly this way. 

                Then there are multiple disabilities that sometimes scramble
our minds and bodies like the eggs with shells in them. Although we may know
how to function well as a blind person, managing other disabilities can be
difficult for us. Because the NFB focuses on blindness, some older blind
people continue to focus only on blindness, avoiding or ignoring the onset
of other disabilities. As one who has dealt with multiple disabilities all
my life, one of the most difficult issues is not the disabilities, but the
confusion around them. Many people assume that whatever bothersome thing
happens is automatically blindness-related, as if blindness runs our lives. 

                If I fall, it is said to be because I am blind. Some will
say, "I would fall too if I couldn't see." I explain that I lost my balance
because I was dizzy or my knee buckled under me. When I drop something on
the floor, someone is likely to say, "I would drop things too if I couldn't
see." I answer that it wasn't blindness that dropped the item; my fingers
let go of it. For me, as is the case with other blind people, blindness is
no reason not to get out. Blindness is not as limiting as some other
disabilities. Blindness does not cause pain, though some conditions causing
blindness are painful. Blindness does not cause weakness, dizziness, low
stamina, chronic infections, leg problems, heart problems, and so on. Though
we may have learned how to function quite well as blind people, we may be
less successful in managing other disabilities as they come into our lives
due to the lack of appropriate information. That's when we need to use the
problem-solving skills and alternative techniques we already know to find
new ways to continue our lives as multi-disabled blind people. This is still
a work in progress for me. 

                This is not the time for others to abandon us because we
don't measure up anymore. This is the time when we may actually need more
companionship and support. This is the time when we might need more
understanding, sympathy, empathy, kindness, and patience. 

                We say that the NFB is a family. Families have their younger
members who come along, however, we also have older members. We need to make
sure that they are not put out to pasture and left there to flounder. We
need to include them as much as possible and, in some cases, allow them to
include themselves. Instead of focusing on what we have lost, we need people
around who support our dignity, diversity, and value. We need to honor our
older blind, those who have not joined us yet, and those who have been
around for years. Let us make sure those scrambled eggs have no sharp shells
of unkindness in them. For we all matter. We are all equally valuable. Let
us acknowledge and honor the Federationist in all of us, for it is still
there. The senior blind want to live the lives they want as much as our
younger members do.

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