13 Visually Impaired Mothers
Description
This article is from the Essays on the topic of Women and Disability.
13 Visually Impaired Mothers
Visually Impaired Women as Mothers
by Ruth Bieber-Schut
Before I became a mother, my instincts and common sense told me
that raising a child would likely be the greatest challenge of my
life. After all, how often had I heard the phrase, "children are
a lot of work," and being legally blind certainly wasn't going to
help. So, when I became pregnant I tried to be
prepared. I bought season's tickets to the theatre because I knew
there would be less time to spend with my husband. Little did I
know that my husband was not interested in theatre, and I would
be too tired to care. I planned to attend a class at the
University towards my Master's degree, and although this turned
out to be a positive move, no one warned me about how difficult
it would be to squeeze the class in between breast feedings, or
how tricky it would be to complete assignments while caring for a
child who never seemed to sleep. I joined exercise classes and
post-natal support groups, only to find them virtually
impossible to get to. I plaintively warned my friends and
relatives that I would likely be needing extra support only to
find after the baby arrived that they were all busy and
committed to other responsibilities. Then, to top it all off, the
first year of our son's life was to be the most financially
devastating period that my husband and I had seen in almost eight
years of marriage.
By the time my baby was six months old, I was exhausted,
overwhelmed, and, quite simply, frazzled. The walls of our small
home seemed to close in on me, yet getting out with an infant
seemed to take more energy than I possessed. I was isolated and I
felt trapped. I wondered why I was finding motherhood so
difficult. Was it just me? Some kind of postpartum depression
perhaps? Did it have some-thing to do with the fact that I was
legally blind, or was it just that motherhood itself was
difficult?
In a desperate attempt to understand my plight, I called a local
rehabilitation agency for blind and visually impaired
individuals and made two inquiries: first, what if any support
services were available for legally blind parents; second, could
I obtain a list of visually impaired mothers who might be
interested in speaking with me.
Available support services consisted primarily of volunteers. I
did not take advantage of this service, however--mostly because I
was still too bewildered by my own situation to know exactly what
I would ask a volunteer to do.
Before long, however, I had accumulated a list of other mothers
with a visual impairment. I knew I had to reach out.
I began by calling each mother to request a personal interview. I
simply wanted to explore each woman's motherhood experience, and
to see if she had any words of wisdom for me. The
willingness was evident, but the process was arduous. All
mothers were, I discovered, if nothing else, busy people. By the
time I had completed only two interviews, I suspected that a
support group for visually impaired mothers would be of great
benefit to me and to others in my position. Needless to say, I
jumped at the opportunity when I was asked to lead such a group,
and the twelve sessions which we spent together over twelve weeks
were both enjoyable and enlightening.
I shouldn't have been surprised to discover that my experience
was not unique to me, nor was it solely due to the fact that I
was legally blind. On the other hand, it was not exactly like
every other mother's experience. As simple as this may sound, it
was an important revelation for me.
Description of group
There were nine group members, plus two interviewees who were not
a part of the group. Nine of these women were homemakers while
two worked outside the home, one of whom was myself. The ages of
our children ranged from months in utero to sixteen years, with
the majority being of pre-school age. Each mother had between one
and three children. The marital status of the women ranged from
single parent, to common-law, to married, to divorced. All of
their partners, save one, were or had been sighted. In one case,
the married couple were both totally
blind. Visual loss for each woman was of varying degrees: no
light perception, light perception only, legal blindness (an
acuity of 20/200 or less in the best eye after all possible
correction, or a visual field of less than 20ø), or low vision
(an acuity of greater than 20/200). The women also experienced
different eye conditions: juvenile macular degeneration,
retinopathy of prematurity, retinitis pigmentosa, glaucoma,
diabetic retinopathy, and detached retinas. Although several of
the women had hereditary eye conditions, none of their children
were visually impaired.
The support group met weekly for twelve sessions on Friday
mornings from 10:00 a.m. to twelve noon. The program was
sponsored by and located at a local rehabilitation agency which
was easily accessed by all forms of local transportation. The
centre provided transportation for those women who needed it, a
babysitting service at the centre while the mothers met, a
spacious and comfortable meeting area, as well as coffee and
muffins after each formal session. All of these concessions were
greatly appreciated and, in my opinion, added significantly to
the success of the group.
A college student who was using the centre for a practicum
experience assisted in the organization and ongoing maintenance
of the group.
Each two hour session consisted of one-and-a-half hours of
structured discussion followed by one-half hour of socialization
with coffee and snacks. I was responsible for choosing a theme
for each week and leading the discussions which ensued. Because
my approach was phenomenological in nature, it was critical that
similarities as well as differences in opinions be embraced and
that each woman was able to share her experience comfortably.
Topics of discussion included: child-rearing, issues of safety,
asking for help, mobility, social support and myths, prenatal and
hospital care, and, finally, the ups and downs of mothering. To
round things off, we invited a father who was totally blind to
attend one of the sessions to share his story. As his
children were all young adults and he had been their primary
caretaker, he too had a wealth of information which he presented
with candid humour.
Prenatal and hospital care
Most of the women agreed that prenatal classes and information
was of the utmost importance. The more information the better was
the main conclusion, especially given the potentially
vulnerable situation of having a baby in a hospital. Group
members acknowledged that we had come a long way since the days
of flat operating tables and stirrups, but, for the most part,
the medical model remains intact. In the stories told there were
examples of nurses and doctors who were all too ready to take
charge of a women in labour, never mind a woman in labour who
could not see.
Most participants agreed with one woman who stated:
. . . the prenatal classes were just that, too little. We got to
see pregnancy, labour and delivery, but suddenly, there we were--
the mother of a child and you were supposed to know what to do.
Somehow it was supposed to be all natural and normal, never mind
that you couldn't see and that you'd never had a baby before. You
were simply a mother and your instincts were supposed to take
over.
Breast-feeding, in particular, seemed to be one of the most
frustrating and hopeless obstacles for many of the mothers in our
group. It became apparent to all of us that mothers and babies
didn't automatically know the ins and outs of nursing. To make
matters worse, there seems to be a major visual component in the
breast-feeding process. It was one thing to not know what to do,
it was another to not be able to see and not know what to do.
Heaven help you if you had an infant who refused to latch on. The
stress could be enormous.
That, in fact, was my own experience. Only sheer determination
and the supportive knowledge of a breast-feeding consultant after
I came home from the hospital led me to success. I knew then that
if I had another child, I would ensure breast-feeding support
before the baby was born, as well as in the hospital and at home
if necessary.
Many of the women in our group ended up bottle-feeding their
babies due to a lack of support and out of total frustration.
Some women carried residual anger over this issue months and even
years after their babies were born. Breast-feeding, they felt,
would have been better nutritionally, and a potentially
marvellous way of tactually bonding with their babies.
In my experience, not informing people about my legal blindness
has only led to confusion. As a teenager I made a career of
hiding my disability from my peers. The misunderstandings which
that led to, in the end, hurt me more than anyone else. Since
then I have opted to inform others about my disability. I have
noticed this aids in easing tension and avoiding
misunderstandings.
This decision is supported by the hospital experience of some of
the other visually impaired mothers. One woman who was partially
sighted, and did not inform the hospital staff ahead of time or
communicate her ability to them, was not allowed to hold her
first-born child unless the husband was there. Another woman, who
had night blindness but could see well during the day, was
accused of being lazy during the wee hours when she asked for
assistance with her baby. A third woman, whose vision had
deteriorated since her first baby was born, was given inadequate
help from the nursing staff after the birth of her second baby.
As usual, they thought she was an experienced second-time mom,
and did not know that she was in fact coping with and adjusting
to her decreasing vision. Another woman, who was diabetic and had
a propensity for premature births, found herself at one point
surrounded by a multitude of specialists, all of whom she felt
she had to educate regarding her unique situation. Her experience
seemed to sum it all up: "some medical professionals were
helpful, and some were not. . .just like anywhere else." What was
critical, we concluded, was that this woman had
educated herself about what she needed, and had learned to
communicate those needs to others when appropriate.
Asking for help
Asking for help was possibly the most arduous aspect of my early
motherhood experience. My independence had suddenly been
challenged and the list of requests seemed endless. Like so many
others, I had bought into the patriarchal myth that "doing it
yourself" was better. I had not yet understood that, in fact,
independence itself was a myth. Instead, like countless other
women with a disability, I felt I had to prove my worth. When
sighted individuals would long ago have asked for help, I would
still be struggling to show the world that I could do it on my
own.
Then I found myself responsible for another little life, and
doing it all myself no longer made sense. It wasn't safe, and it
certainly wasn't practical. Asking for help did not come easily
to me. There were days when I resented my dependency so deeply
that I likened my situation to that of a beggar on the street
corner--only I felt obliged to be polite and forever grateful.
The state of constant indebtedness to others only increased my
resentment. I frequently vowed that if my sight ever returned I
would never ask anyone to do anything for me again.
One mother who had been totally blind all her life expressed
minimal concern about requiring and seeking assistance. She
seemed to be well aware of her own personal strengths and needs,
and cared little about what others thought of her competencies as
a blind person. In my estimation, she possessed two of the most
critical components necessary for successful living: solid ego
boundaries and a solid support network. Reliable friends and
family members did not hesitate to lend a hand when necessary,
and her identity was not threatened by their assistance. It is
possible that because she had been totally blind from birth she
was unencumbered by the personal crises which occur as a result
of sudden or gradual vision loss. In any case, the message is
clear. Motherhood under any circumstances is not meant to be
endured alone and, as blind mothers, it is important to
understand our need for connection.
If friends and relatives are not readily available, the
following sources of support come highly recommended by various
group members: local churches, community associations, community
health services, post-partum support groups, neighbourhood
coops, parenting groups--or, form your own group like ours
through a local rehabilitation centre. Many of the services used
by the mothers were free of charge and supported by volunteers.
Paid services should also not be overlooked--a full-time nanny, a
day care, or a qualified babysitter who comes in to one's home
for two hours once each week.
A final solution to the dilemma of asking for help involves a
change in attitude--namely, the acceptance of the reality of
interdependence rather than the patriarchal myth of
independence. We became convinced that we deserve to receive help
as much as give it, and that children are the
responsibility of all of society, not just their parents.
Orientation and mobility
Virtually all of the women in the support group felt that
getting from point A to point B was perhaps the most trying
challenge of their motherhood experience. As one woman
explained, mobility has always been difficult, and with a young
baby, it is just that much harder. Any mother probably has a
story or two of how frustrating it is to make it to a doctor's
appointment on time in the dead of winter with a two-month old
infant, never mind if you can't see.
In the not-too-distant past women commonly stayed home with their
children and connected more readily with other mothers in the
neighbourhood. Lately, however, mothers have more commonly chosen
to return to the work force out of personal desire and/or
necessity. This has resulted in a loss of community and a sense
of isolation for many of the mothers who have opted to remain at
home with their children. A greater loss of connection was felt
by those women who were further hampered by limitations such as
visual impairment and no ability to travel freely.
Members of the group suggested requesting assistance from
friends, relatives and/or volunteers; using special needs taxi
service; using the handibus service for individuals with
disabilities; using regular taxi service; pulling a stroller
while using a white cane rather than pushing it; and carrying the
baby in backpacks, Snugglies, slings. Also, babysitters allow for
important opportunities to get out without the
children. The most handy and least expensive form of travel for
me turned out to be the Snugglie. I always knew where my baby was
and my hands were free to manipulate a white cane. I also found
taxis to be convenient, especially for emergencies, but, of
course they could be very costly. In addition, when
travelling to an unfamiliar setting, orientation could be
daunting unless the driver was willing to assist. In most cases I
have found this to be of little concern if I communicated my
needs clearly to the dispatch as well as to the driver.
Finally, the expertise of an orientation and mobility instructor
for blind individuals should never be overlooked. These
individuals have received extensive training in the art of
mobility, and their expertise has been invaluable to countless
visually impaired individuals.
The ups and downs of motherhood
When asked what were the favourite and least favourite aspects of
mothering, group members mentioned elements common to mothers in
general. Some of these included watching the child grow, hearing
the child first say "momma," watching the child sleep, and
listening to the child's cheerful chatter first thing in the
morning. More negative topics also were common, such as not being
able to control the child's behaviour and not getting enough
sleep. Other comments were less universal and more unique to the
visually impaired mother. One woman, who could see
relatively well during the day but suffered from night
blindness, expressed frustration with her preschool daughter who
was skilled at sneaking into the living room in the evenings and
watching television with her mother when her mother thought she
was tucked away in her bed. Another more common concern was that
of not knowing how severely injured a child was after
all-too-common tumbles. One mother who was totally blind, and
whose child was an extremely agile climber, explained how her
daughter ran away from her whenever she hurt herself. This was,
needless to say, both frustrating and worrisome.
One of my personally least favourite aspects of mothering was not
being able to see my child's face. This came as somewhat of a
surprise to me because I had never really seen facial
expressions before. What I learned, though, was that how babies
look with their adorable faces and subtle little movements is one
of the few rewards a mother can receive for all the hard work.
This is especially true if the baby cries and fusses a lot, like
mine did. Like so many colicky babies, my son would fuss and fret
for several seconds, and then suddenly break out in a charming
grin, only to return back to fussing and fretting. I, of course,
could not see the smile, but only heard what
seemed to me incessant complaining. Other mothers were more
fortunate of course, and spoke of how much they enjoyed their
baby's giggles and googles and babbles. My child was a very early
talker, and this naturally was a great relief to me, but those
early months of parenting taught me to never
underestimate the impact of non-verbal communication.
Conclusion
Four and one-half years have gone by since my first son Eric was
born, and now he has a brother, Martin. In looking back at that
first motherhood experience, I now know that it was truly more
difficult than most, with my visual impairment an exacerbating
factor. I also believe, however, that mothers in general have
more in common with one another than we sometimes realize.
Typically, we are all unique individuals who do our best and
simply want the best for our children.
I am also convinced that motherhood is an experience to be
shared, and that the need for connection is paramount. However,
isolation and alienation for the contemporary mother has
threatened to become the norm. Reaching out to reclaim a sense of
community, in my opinion, must be seen as a priority--not only
for the sake of today's mothers and children, but also for the
sake of the future and well-being of our society.
Ruth Bieber-Schut received her Master of Education Degree with a
Specialization in Rehabilitation from the University of
Calgary in June 1990. She was an eight-year employee of the
Canadian National Institute for the Blind, Calgary Office, and
currently works with the Behaviour Support Team at the
University of Calgary. She is legally blind, and is a mother of
two sons.
She would like to thank the Canadian National Institute for the
Blind, Calgary Office, for making the support group possible, and
the Behaviour Support Team, University of Calgary for
secretarial and editing services. Finally, she would like to
extend warmest appreciation to the visually impaired mothers who
so freely shared of themselves.
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