ONE IN TEN
A PUBLICATION OF REHABILITATION INTERNATIONAL/UNICEF COLLABORATION ON CHILDHOOD DISABILITIES
VOLUME 17 - 1997
(English Version)
Girls & Women with Disability: Issues & Initiatives
This issue reports on the needs of women with disabilities and their right to motherhood. Two international events in 1997, the International Leadership Forum for Women with Disabilities and the First International Conference for Parents with Disabilities, brought into focus how all cultures challenge the rights of people with disabilities to raise children. The following articles examine this situation from distinct cultural perspectives and conclude that disabled women can parent as well as other women, but need community acceptance rather than opposition. A secondary theme is that women with disabilities are taking initiatives to reduce the isolation of and discrimination against disabled girls. These initiatives are low or no cost and can be easily adapted to any culture in any country, depending only on the creativity and personal experience of the educator.
IN THIS ISSUE:
" Girls and Women with Disability: A Global Overview - page 2
" Situation of Parents with Disabilities and Their Families in Zimbabwe
- page 4
" Native American Communities - A More Inclusive Society? - page 6
" The Right to Maternity - page 8
" Role Models: Planting Seeds of Positive Possibilities - page 11
" Low Cost-High Impact Public Education Activities with Children - page
12
" Resources Concerning Girls & Women - page 13
Girls and Women with Disability: A Global Overview
By: Nora Groce, Ph.D.
Medical Anthropologist, Yale University, School of Public Health
This paper is based on an article from The Journal of Disability Policy Studies (Vol. 8).
Over the past decade, there has been increasing recognition that women and girls with disability face discrimination on two fronts. Not only do pejorative social attitudes towards those with disability limit their options and opportunities in life, but the second class status of females in most societies further restricts what they are entitled to, even within programs specifically targeted towards those with disability. For these reasons, women and girls with disabilities are often said to face double discrimination.
Health Care & Survival
World-wide, girls and women are at increased risk of becoming disabled,
and once disabled, they are likely to live the remainder of their lives sicker,
poorer and more socially isolated than either men with disabilities or than
non-disabled women. These risks even precede birth. Girls born into poverty
are at increased risk of being disabled, because they are more likely to be
born to undernourished mothers, to live and work in more physically dangerous
environments, to have less to eat and to receive poorer quality medical care
or no medical care at all.
In societies where preference is given to boys, particularly in poorer households,
families may be slower to expend limited household income on food and medicine
for an ailing daughter than for a son. For example, parents may be tempted
to wait for a few days longer to buy expensive
antibiotics for a daughter's earache than for a son's, turning a simple ear
infection into a permanent hearing loss. A mother with several young children
may be less willing to walk to the next village to ensure that a daughter
receives a timely polio immunisation than would be the case if a son were
involved.
Where a daughter is already disabled, such practices may be more pronounced,
placing female children with a disabling condition at even greater risk for
severe illnesses, becoming multiply disabled or dying. For example, census
data in Nepal indicates that the distribution of individuals with "lower
limb" disability is 12% in males, compared to 5.9% in females. As almost
all lower limb disability in this population is attributable to polio, which
affects males and females in equal numbers, the imbalance in gender distribution
reflects higher mortality rates in female survivors, not higher prevalence
rates of polio in males.
Compounding these factors are risks incurred by specific cultural practices
faced by females alone. For example, in many areas of sub-Saharan Africa,
female circumcision in girls from 6 to 12 can lead to severe and chronic disabling
pelvic and urinary tract problems and mobility impairments. The operation
itself, usually performed by local practitioners with unsterilised equipment,
places girls at greatly increased risk for a number of infectious diseases,
including HIV/AIDS. This practice can also lead to disabling infections and
injuries for both mother and child during childbirth.
A girl or woman with a disability is much less likely to receive adequate
rehabilitative care than a man with a disability of the same age and socio-economic
background. In many places, where rehabilitation services have been established
in the aftermath of a regional or civil war, services are restricted specifically
to male veterans, even though conflicts and landmines take a particularly
high toll on girls and women who gather firewood, draw water and work the
fields. Where services exist, facilities are often located in cities and require
stays of weeks or months. In societies where it is considered improper for
a girl or a woman to travel alone or to live away from the supervision of
her male relatives, attendance at such centres or female participation in
such programs may be very rare.
Not only are girls at increased risk of becoming disabled, but once a disability
has occurred, virtually every other expected social role is significantly
altered.
Education
Girls with disability are routinely confined to their homes by families
who fear public disgrace or physical harm to their daughter should her disability
status become known. Education for girls and women with disability, even in
countries where female education is now accepted as the norm, is strikingly
low. Furthermore the education of a girl with a disability is often disrupted
more frequently and ended at a younger age than is the case for her non-disabled
peers. Recent UNESCO studies and studies from the World Blind Union estimate
that the world-wide literacy rate
for girls and women with disabilities in developing countries hovers near
1%.
One reason why many disabled girls and women are rarely educated is because
their families or societies do not see a need for their education. There is
often little expectation that a girl with a disability will live independently
or will marry and establish a household of her own. As one often does not
become a full adult in the eyes of the community until marriage, lack of marriage
keeps many disabled females forever in the status of dependent child. (This
does not mean that many girls and women with disability do not establish relationships,
become sexually active or bear children, only that their activity is often
not acknowledged by the societies in which they live).
Employment
Although employment statistics for girls and women with disabilities are strikingly low, (according to the United Nations, perhaps only 25% of women with disabilities are in the workforce), this does not mean that most of these women do not work, only that this work is often not acknowledged by the communities in which they live. Many girls and women contribute significantly to the economic well being of their households, cooking, cleaning, watching children, assembling piece work that will be brought to market by others, and doing the hundreds of chores that make families, villages and societies run. Their contributions are often overlooked by economic planners, their communities and even their own families. This does not mean they do not contribute, only that their contributions often go unnoticed. In addition to their contributions to their own households, millions of girls and women with disability around the world help support themselves and their families by begging. Millions more, unable to support themselves in any other manner and isolated from family, community and societies support systems available to non-disabled women, are forced to turn to prostitution.
Abuse
Married or single, girls and women with disabilities are at greater risk
for physical, verbal and emotional abuse than non-disabled females in the
same households. Although statistics on this are notoriously inaccurate, it
is now believed that girls and women with disability face abuse at at least
twice the rate of their non-disabled peers. Furthermore, there is often a
prevailing social more that in effect states that a female with a disability
should be willing to put up with a greater amount of abuse than an non-disabled
women, because she is "lucky" to get any man.
Moreover, to truly understand the issues faced by women and girls with disability
around the world, it is important to recognise the fact that problems they
face are complex. The life of a women or a girl with a disability will be
affected by the social and economic class into which she is born, her marital
status or potential marital status, her family's social networks, her level
of education and the specific type of disability she may have. A disabled
daughter of a wealthy family may be surrounded by a supportive family and
family servants. A daughter of a poor family in the same community with an
identical type of disability, may find herself a street beggar at an early
age.
Conclusion
The future for girls and women with disability is still cloudy. Major health,
education and development initiatives that target girls and women all too
often overlook those who have a disability. Many of the local, national, and
international organisations that address disability issues tend to reach men,
but spend disappointingly little time or attention on the unique psychological,
social, economic and cultural issues that complicate and restrict the lives
of girls and women who suffer from a double discrimination against disability
and gender.
Situation of Parents with Disabilities and their Families in Zimbabwe
"In the first place, a disabled woman is not expected to have children, for obvious reasons. But what is rather surprising is the fact that it is usually non disabled men who are responsible for impregnating disabled women. They do not want to be seen with disabled women during the day, but at night we are women all the same! Such is the hypocrisy we encounter as disabled women."
by Lizzy Longshaw
Women's Group Co-ordinator
National Council of Disabled Persons of Zimbabwe
The most accurate words that can be used to describe a typical parent with
a disability in Zimbabwe are: illiterate, desperate, marginalised, pathetic,
ignored, unemployed, and poorest of the poor. A typical disabled parent I
am talking about is a woman with a trail of four, five or six young children
whose age difference is no more than two years. Usually, there is no responsible
father to help provide for the welfare of the children; she has to take care
of the children herself, that is providing them with food, clothing, shelter,
medical care, and all the comfort the children require.
It is not common to come across disabled fathers who are single parents and
have the responsibility to take care of their children. Such is the situation
of parents with disabilities in Zimbabwe.
Situation in Africa
The population of Zimbabwe is approximately 11 million people and according
to WHO estimates there is therefore not less than one million people with
disabilities in the country. The population of women is not less than 52%,
which means that there are more women with disabilities than males in Zimbabwe.
Perhaps this is the picture in the whole of Africa.
In the African tradition, disability is generally viewed as a curse, a punishment
from the ancestral spirits or God; this is a punishment for wrongs committed
by one's parents. The birth of a disabled child is therefore not usually welcomed
in a typical African family. A family with a disabled member is usually isolated
by the community, in the same way that the family isolates their disabled
family member. It is therefore common to find parents hiding away their disabled
children and in the process they end up failing to go to school; they cannot
play or mix with other children. In adulthood they become the worst victims
of ignorance, poverty, disease, discrimination and a whole range of negative
attitudes they become isolated from the general social systems and/or practices.
Attitudes Towards Parenting
Having said all this, we need to look at how this affects child bearing,
and how a woman who gets pregnant is perceived by the people around her.
In the first place, a disabled woman is not expected to have children, for
obvious reasons. But what is rather surprising is the fact that it is usually
non disabled men who are responsible for supposed to be an unquestioned right
for every disabled woman and man. When a disabled woman gets pregnant the
first people to ask questions are the health authorities, i.e. doctors, nurses,
etc. They don't seem to understand that we also need families perhaps this
is the reason for the lack of appropriate facilities for women with disabilities
in maternity wards in most of our hospitals in Zimbabwe.
During the early days, weeks and months of pregnancy, family members are not
usually supportive of their disabled daughters' situation. It is considered
unpalatable for a woman with a disability in a family to become pregnant,
let alone getting married. After the birth of her child, a disabled mother
struggles to raise her child in an environment which is more harsh than supportive.
She is often treated as if she is less worthy, and someone who is looked down
upon at and pitied.
Development Programme
In the organisation that I work for, I am the Co-ordinator of a development
programme for women with disabilities. It is through my day to day interaction
with especially disabled mothers that I have grown to know their total situation.
We have a number of activities that we are running through the programme that
I co-ordinate to empower women with disabilities. These activities are first
and foremost aimed at building confidence in women with disabilities so that
they are able to take up the challenges that face them. They build the confidence
to confront negative attitudes towards disability and their total situation.
Seminars, conferences and workshops are organised at which women are encouraged
to discuss their problems and difficulties among themselves and programme
facilitators help to guide them through these processes.
We have adult literacy and skills training activities to help these women
learn to read and write and prepare them for participation in income generating
activities. Indeed, there are mothers with disabilities who have now improved
the quality of their lives through self reliance activities that we are promoting.
Given adequate resources many more can enjoy economic empowerment. They are
trained in how to lobby and advocate for their rights and how to network and
build alliances with other women and groups in similar situations.
On the policy making front, we are lobbying with government for affirmative
action programmes and laws to promote and protect the rights of women with
disabilities.
We are confident that with the passage of time the situations of mothers,
if not all parents, with disabilities in Zimbabwe will improve.
Native American Communities - A More Inclusive Society?
I had difficulties during both of my pregnancies and found myself breaking new ground for my obstetrician in dealing with spina bifida and pregnancy. I felt a lack of acceptance and had more questions from those individuals outside my family and my community. People could not understand why I would want to "add to my burden" or "make it harder on myself".
By LaDonna Fowler
The Rural Institute on Disability, Montana, USA.
Introduction
I am an enrolled member of the Fort Belknap reservation in north-eastern
Montana but I presently reside on the Flathead Reservation. My father is an
Assiniboine (Nakota) and Santee Sioux (Dakota). My mother was Turtle Mountain
Chippewa (Anishinabe). I am the youngest of my brothers and sisters. I still
have three sisters and two brothers living (there were eleven of us).
I presently work for the Rural Institute on Disabilities at the University
of Montana for the Native American Community Programs which include the American
Indian Choices Project and the American Indian Disability Legislation Project.
I am the Project Director for both programs.
Family Life
I was born with spina bifida and was not given much hope for survival by
the medical profession. Fortunately for me, my parents sought help. My father
met a Shriner and found out about the free services for children with disabilities
(then known as crippled children). We lived hundreds of miles from the nearest
centre, but my folks always scraped the money together to get me to my appointments.
My early life was spent having corrective surgery for club foot and major
hip operations that were pretty much experimental at the time. I was away
from home for months at a time and learned my own survival skills combined
with the many things that my Mom taught me. My mom and I were very close and
she passed on many of her beliefs in order to make me strong in spirit and
beliefs.
Expectations for me were really no different than for anyone else in the family.
I did things in a different way and had to ask for help but I was very independent.
Looking back, I believe that the belief in myself and what I could do was
a message that I heard and saw from my family. I had no idea that I was a
child with a disability because we saw it more as just health problems that
had to be dealt with.
One memory that really stands out was when I was in the seventh grade and
had a disagreement with some of the popular girls. I stood up for whatever
was the "right thing" and can still hear these girls saying, "...you
sure do think a lot of yourself." My response was, "...I know who
I am and if that is thinking a lot of myself, then I guess I do." I can
remember telling my mom about the conversation and she repeated that I had
to know who I was and that I had a purpose for being here and it was my job
to find out what that purpose was and not listen to anyone saying things to
dissuade me. I think that this was the first time that I realised that others
might see me in a different light. Their attitude and statements were a surprise
to me at the time.
Adolescence
There was a distinct difference between what I was told (or not told) at
Shriners and what I was told at home. At Shriners we were not told anything
about sexuality or what to expect as adolescents looking towards adulthood.
Yet at home our mother told me and my sisters the facts about our bodies and
there was never a lack of expectation that I would not proceed in life as
my sisters had (marriage, children, etc.).
I had boyfriends, and was even engaged to be married just before graduation.
My parents both talked to me about how hard relationships and marriage can
be at an early age. They wanted me to have more skills by going to school
so that I could take care of myself. I reconsidered the marriage proposal
shortly after graduation and went onto school.
Marriage and Parenting
I spent a lot of time experiencing life by going to school, working and occasionally
returning home to my family to help take care of my nieces and nephews. But
I always wanted to see what was happening off the reservation and would leave
again.
Then in 1983 I met my husband, Tracy, while we were both attending school
at Oklahoma State Tech in Okmulgee, Oklahoma. Our son was born in 1985 and
our daughter was born in 1986. Again, my family was very supportive of our
becoming parents. I had difficulties during both of my pregnancies and found
myself breaking new ground for my obstetrician in dealing with spina bifida
and pregnancy.
I felt a lack of acceptance and had more questions from those individuals
outside my family and my community. People could not understand why I would
want to "add to my burden" or "make it harder on myself".
I was too busy as a new mom to really listen to those type of comments.
My experience with my son was particularly memorable because he was our first
born and I had to figure out how to carry him in the wheelchair, to get him
around the house utilising a bassinet, a baby carrier and a stroller.
My most difficult times were when both of my children were toddlers. If you
have a mobility problem, then you tend to keep the kids close to you and teach
them early on that they can't run away from you. I laughed when I realise
that I had developed my mom's same deadly "look" that told my children
to stop and stay put!
Learning Tolerance
Our children have had the benefit of growing up with differences and learning
to tolerate all human beings. When other children would ask questions about
my wheelchair, my kids were the first to answer rather rudely until we worked
on some answers that were based on looking at how "big" the child
asking the question was and how much time we had to answer. Sometimes my daughter
would point out to other kids that she was able to ride with her Mom while
they had to walk beside their Mom.
My children are now 12 and 10 years old. Kyle just entered the 7th grade and
Andrea entered the 5th grade. There is one thing that my children will always
be and that is strong disability advocates. They check out accessibility for
restaurants, stores, and particularly bathrooms, to see if their Mom can get
in the door. They do help out more in assisting me but I never see it as a
burden to my children. They must learn to care for those around them in their
community, particularly the elders, and this teaches them more about utilising
an "us" perspective than a "me"one.
My Spirit Dances
Culturally, we attend pow-wows in the spring and summer. Our daughter dances
and our son is showing more interest in wanting to dance. Even though I cannot
join the circle to dance, we still participate by bringing the kids, camping
out, and attending the celebrations. I always tell my family that I let my
spirit dance and my daughter says that she dances for the people and for me.
I believe in the Native American communities we have a more inclusive society
and include people no matter what their abilities. In most Native American
languages there is no word for disability.
There are roles that we have in our families and our communities. My children
know that I work at a national level as a Native American disability advocate
and share me and my time helping others get services and education around
disability. But the bottom line when I get home from travel or commuting is
that I have a definite role as the hub of my family.
The Right to Maternity
By Rosangela Berman-Bieler
Event Coordinator, International Leadership Forum for Women with Disabilities.
Background
At age 19, in 1976, in Rio de Janeiro, Brazil, I had a car accident and became
quadriplegic. A year later, I got involved in the Disability Rights Movement,
advocating through a "patient's club" inside the Rehabilitation
Centre and from that point on, I became totally committed to the cause. Right
after the accident, I decided to restart college and got my degree in Social
Communications, majoring in Advertising and Journalism. I met my husband at
the University and studied with him for 4 years. Our daughter Mel is now a
beautiful 11 year old girl.
Pregnancy
We faced a major lack of information, mainly from doctors and rehabilitation
service providers. For example, I was the one who provided information to
my gynaecologist on spinal cord injury issues , such as how my urinary, circulatory
and other physiological systems functioned. The gynaecologists and obstetricians
didn't know much about disability and pregnancy and were not used to dealing
with it.
At the beginning of my pregnancy, we visited a prestigious rehabilitation
centre for Spinal Cord Injuries in Stoke Mandeville, England. I had heard
that Dr. Gutmann, the founder of that Centre, after World War II had conducted
some research on maternity and women with disabilities.
We brought to Brazil selected texts and translated them into Portuguese to
study with my doctor, who happened to be a woman. My husband and I decided
to do our part to keep the situation under control, partly because of how
much "panic" we felt from our doctor, who ended up becoming a close
friend of ours. To her "despair", I developed all the conditions
that can happen to a quadriplegic in that situation and that she didn't know
about such as chronic urinary infection, strong anaemia and so on.
However, I have friends with spinal cord injuries that had problem-free pregnancies
after their injuries. One of them had three children within a five year period.
During pregnancy even her chronic urinary infection disappeared and she always
felt in great shape.
Even with some of the tough moments during my pregnancy, I can still feel
the great pleasure of having generated inside my body a being, as a result
of my love towards my husband and for life itself.
Other Experiences
I have learned from some women with disabilities that they also encountered
lack of information and support for their parenthood. On a trip to Europe,
a disabled women asked me what I had to do to have my doctor's approval for
my pregnancy. I was surprised by the question and told her that I did not
ask for permission to get pregnant. I just did it like everybody else.
She told me the doctors there were very controlling and that disabled women
were even discouraged by their doctors towards maternity. We can assume this
happened because of the lack of information and prejudice of those doctors,
not on the basis of actual medical risk .
While in Europe, I also was told by a quadriplegic who was trying with his
wife to adopt a child, that they were facing all types of discrimination from
the court system because of his disability. The judges argued that he could
not be a good father because his wheelchair would keep the child from body
contact with him, and body contact was really important for the child's development.
Finally, after years fighting with the system, they adopted a baby-girl from
Latin America and are a very happy family now.
A Brazilian friend of mine who had post-polio syndrome and was pregnant, was
told by her doctor that in order for her not to take any risks she should
have a caesarean delivery and have her tubes tied right away in order to avoid
new pregnancies.
However she started feeling contractions unexpectedly, got to the emergency
department of the public hospital, had natural delivery and did not have her
tubes tied. Afterwards she had two more children by natural delivery and adopted
two other. This same woman always tells a funny story that took place when
she was close to having her third child: she was on crutches, already far
into her pregnancy and as she was taking a cab, the driver looked at her,
literally shocked and said out loud: "My God! Who was the crook who had
the nerve to do this to you !?!"
Attitudes and Stigma
All over the world, women with disabilities have to struggle against society's unawareness and stigmas such as:
o disabled women don't have sexual desires;
o disabled women are not capable of having sexual relationships;
o disabled women can't generate children, at least not healthy ones;
o disabled women are sick, fragile and should not expose themselves or take
risks with pregnancy;
o disabled women cannot raise children by themselves.
We have to struggle in our daily lives to make society realise that we are
women with the same instincts and rights as others. We also have to constantly
educate the doctors who should be our allies and unfortunately sometimes happen
to be our strongest obstacle in the process of the development of social awareness
and inclusion in society.
Acknowledging that in some cases women have real health or life risks when
getting pregnant, unfortunately in many situations they are actually facing
discrimination and lack of information from doctors and society.
Regarding doctors, this probably still happens because of the outdated mentality
of some schools of medicine that still generate graduates encouraged to consider
their clients as fragile patients, completely dependent on their knowledge
to survive.
Therefore, people with permanent disabilities are rarely treated as people
who simply are in a different situation, retaining their rights, their physical,
social and sexual integrity. Instead, they are viewed as permanently sick
and incapable of making their own decisions and leading their own lives.
Motherhood
My relationship with my daughter when she was born was something full of beauty
and strong emotions but difficulties as well, since she was as much as a dependent
being as I was, in many aspects. However, in her case I was the one who was
supposed to fulfill her needs such as: giving her a bath, changing her diapers
and clothes, waking up in the middle of the night when she cried, running
to save her from an emergency situation, feeding her with my own hands and
so on. I could not do it myself when she was a little baby.
It was a very hard experience for me because I had to share my motherhood
with other people. On the other hand, we always had a very strong emotional
and affectionate relationship as mother and daughter, that was and will always
be irreplaceable for both of us. I have learned that being able to be operationally
efficient with a child is easily replaceable.
I always tried to do as much as I could by myself and when I couldn't I would
be close by or actively orienting my husband or my attendant on what and how
to do it.
Well, now that she is almost a teenager, I am really happy with the results.
I think my daughter has a healthy image of her mother, an image of a mother
who is there for her, a regular mom, as everybody else's mom. Last month,
in school, her English teacher asked the students to describe a person in
detail. She could have picked anyone but she chose to describe me:
"Rosangela Berman-Bieler is my mom. She has dark brown hair and light brown eyes. She loves to talk to her friends and family. My mom wears glasses and always has lipstick on. She always wears earrings no matter where she is. One thing my mom has that most people don't is a wheelchair. She was in a car accident when she was almost nineteen. Everyone thinks it is sad but she does not care. She is happy the way she is. My mom is a very caring person. She has a good humour and loves to laugh. She is a very nice person, too. But on the other side of the story she can be a pain. She, as you probably know, is like any other mother, some times pretty nice and some times pretty mean. But of course, I love her."
Analogy with Working Mothers
In many aspects, when she was little, my daughter had the "mother-provider"
image distributed among a few close people. I don't know if this situation
made her the independent person she is today or if it only reinforced her
personal traits as an individual. It is likely that many children of people
with severe disabilities or even of mothers who work full time, have these
same characteristics.
The analogy with the working mothers might seem initially hard to perceive,
but it is comparable in a lot of ways.
A woman with severe disability who decides to have or adopt a baby, is comparable
to a working woman who theoretically does not have enough quantitative time
to dedicate to her child. However maternity has to be more than physical or
time availability only. It is a relationship based on affection and responsibility,
in which qualitative availability is what really makes a difference.
After evaluating this experience, I really believe that maternity does not
only serve the purpose of generating or adopting a child but the one of raising
someone towards happiness.
Rights and Responsibilities
Disabled women or even women who cannot dedicate a long amount of their daily
hours to their child should not allow others to take their role as mothers
just because they believe they could not do it on their own.
I know some women, thinking that they cannot provide adequate assistance,
let others make all the decisions for them. In a paternalistic society as
in Latin America, for instance, this is a very common situation among family
members, and when you give away your responsibilities you are also giving
away your rights. As a consequence, the child loses a mom too.
Maternity is part of being a woman. It is a combination of biological feeling,
skills and talents. It is a commitment towards life and love that only women
can provide to the world.
If you are a disabled woman, coming from any culture of the world, who has
the desire to have or adopt a child, go ahead. It is also your own right.
Of course you, as an adult and a responsible person, have to be in control
of this decision, and evaluate when it is a medical risk. Don't leave this
decision for somebody else to make or for society to judge. Take for yourself
the very enjoyable responsibility of exercising all of your human and social
roles.
Role Models: Planting Seeds of Positive Possibilities
by Harilyn Rousso, Executive Director, Disability Unlimited Consulting Services,
NY, USA.
At age 22, just by coincidence, I was being interviewed for a job by a woman
economist with cerebral palsy. She was one of the few adult women with a disability
that I had ever met. It was such a shock-like looking in the mirror! There
in front of me was everything society had taught me was not possible: a woman
with my disability who was succeeding in a man's profession, who was married,
who was in a position of influence in society.
Powerful Effects
Since then, I have spent much of my professional life creating projects that offer role models to young women and girls with disabilities because I know what a powerful effect this had on my life. But, I also know how much more valuable this would have been if it had happened when I was 10 or 12 or in early adolescence, when most girls begin envisioning their future.
Success by Whose Definition?
Because it is difficult to identify women with disabilities who are succeeding
by traditional societal definitions, there are few opportunities for disabled
girls to meet role models or someone who can mentor them. In general, the
strongest role model or mentor for a young person is someone who has confronted
and successfully addressed similar experiences or sources of oppression. Because
disabled girls are more isolated from social situations and less likely to
have access to jobs or responsibilities outside the home than other girls
their age, they rarely encounter role models or the mentoring experience.
For the most part, they will not find positive mirrors of themselves in the
mass media, among the successful adults they will meet, or even among older
relatives who often act as examples or mentors for non-disabled girls. And
most media images of women with disabilities reinforce negative stereotypes.
Create Opportunities
So, I believe it is critical to create these opportunities for young disabled girls to meet and interact with disabled women. There are several advantages: the women can plant the seeds of positive possibilities in the minds of the girls-they are real life examples of their futures. The girls will have the chance to ask questions about their own situations in an accepting atmosphere. Additionally, if the opportunity for exchange takes place within a group, disabled girls can also profit greatly from comparing information and opinions with each other. An added benefit is that the mentors learn from the girls, so mentoring enriches the lives of both generations.
Forceful but Narrow Messages
Most young women and girls need to be encouraged not to disassociate from their disability, but instead to recognize and embrace it as an acceptable part of themselves that may be a source of barriers and challenges to overcome, but can also be a source of strength and pride. Society and the media bombard us with forceful but narrow messages on what womanhood is. These emphasize unreachable standards of physical perfection and beauty. All women, disabled or not, are harmed by these limiting messages, but those of us with disabilities are particularly likely to be devalued and marginalised. We need strong counter-balances to these images and other sources of information and validation to accept ourselves as we are.
Initiatives Needed
Therefore, it is all the more important that disabled women take the initiative
to reach out to girls with disabilities where ever they may be-schools, clubs,
associations, churches, etc. Additionally, it is crucial since not all disabled
girls can be reached directly, that mass media begin including examples of
successful women with disabilities.
We need to greatly expand the network of disabled women and disabled girls
in order to ensure our survival and success in an often unwelcoming world.
Low Cost-High Impact Public Education Activities with Children
by Kathy Martinez, Director, International Division, World Institute on Disability
Introducing the concept of disability to non-disabled children and disabled children through the schools is an example of a no or low cost-high impact activity. More and more disabled women are utilising this approach to achieve two important objectives: acting as role models for the disabled children and presenting disability information in a non-threatening and positive way to the non-disabled children. In this way, all children are given the chance to see disabled adults in a position of authority and discussing disability concepts and realities on a down-to-earth, factual level.
No Low Expectations
Neither disabled nor non-disabled young children have the low expectations around disability that most adults do. In the projects I have been involved in, if you show them other ways of communicating messages, such as Braille or sign language, they take it in stride and are frequently enthusiastic about learning what they see as just new modes of expression. It is from adults that children gradually absorb the typically low expectations of people with disabilities, the assumptions that because people do not walk or see or hear in the same way as others, they cannot think or do much.
"The Kids Project"
I was involved with "The Keys to Introducing Disability to Society (Kids) Project" for several years and highly recommend its approach of demonstrating through the schools that disabled people can be average, productive adults. We used games, stories and short discussions and activities to demonstrate what life with a disability is like on a basic level.
"Mystery of Disability"
As soon as we had dealt with the "mystery of disability" (how do you do this, why can't you do that?), the children were ready to interact with us as any other people-they were not fixated on the disability itself as adults often are. The Kids Project gave them a safe and entertaining space to ask questions, and to try out some technical aids and "survival strategies."
Create Positive Images
I would encourage more women with disabilities, as well as men, to participate
in or create projects that help to create positive images and impressions
of disabled people. It is not necessary to spend a lot of money-with my cane,
a Braille writer and a couple children's books with both Braille and print,
I have worked with dozens of classes over the years.
I also take time to go to special schools or classes where I am invited to
speak to groups of blind girls and boys about all the different jobs they
might do later on.
It is so important for disabled women to take action so that future generations
of children are not burdened with today's negative images.
Resources Concerning Disabled Women & Girls
Parenting
? Books and periodicals to help blind parents raise children and to help either blind or sighted parents raise blind children are available in English from the National Federation of the Blind, 1800 Johnson St., Baltimore, MD 21230 USA; tel 410 659-9314. Examples include Future Reflections, the NFB magazine for parents of blind children, and Twin Visions, a series of children's books in both print & Braille to enable either sighted or blind parents to read aloud to their children.
? A variety of resources for families with disabilities is available from Through the Looking Glass, 2198 Sixth St., Suite 100, Berkeley, CA 94710 USA; tel 510 848 1112; fax 510 848 4445; e-mail: TLG@lookingglass.org. In 1997, TLG held its first international conference for parents with disabilities and their families in October 1997. Examples of its publications and resources include: Adaptive Parenting Equipment: Ideabook 1; Mother to Be: a Guide to Pregnancy & Birth for Women with Disabilities; Mother Father Deaf: Living between Sound & Silence; A Guide to the Adoption Option for Prospective Mothers with Disabilities & their Partners; and Challenges & Strategies of Disabled Parents: Findings from a National Survey. TLG resources include a database dealing with family & disability issues; a bibliography of related books & videos; and staff who can provide technical advice & support on parenting with a disability.
? TechnoBraille is a new technique which enables Braille to be applied to paper using plastic paint to form the dots, invented by Technology Tree Co. Ltd., in Korea. This technique reduces the bulkiness of Brailled books and is easily applied to paper which already has print text. An example is shown beside, children's books which feature print & Braille text, enabling blind and sighted adults and children to read these books together. Information: Chung-Hwan, Kim, President, Technology Tree, Hanil B/D 6th Fl., 296-10, Ulgiro 3-ka, Chung-ku, Seoul, Korea; tel 2 278 1670; fax 2 278 1675.
Developing Countries & Community-Based Programs
? Where Women Have No Doctor by A. August Burns, Ronnie Lovich, Jane Maxwell & Katharine Shapiro, published 1997 by the Hesperian Foundation, 2796 Middlefield Rd., Palo Alto CA 94306 USA. This comprehensive text of 32 chapters, available for $17, instructs women how to identify common medical problems and outlines various treatments. The book also contains information about pregnancy, birth, violence against women and aspects of disability.
? Loud, Proud & Passionate: Including Women with Disabilities in International Development Programs, edited by Cindy Lewis & Susan Sygall, published 1997 by Mobility International USA, P.O. Box 10767, Eugene, OR 97440 USA. Available for $45, a first-of-its kind book documenting the experiences of development organisations and agencies which have worked to include women with disabilities, as well as profiling particular disabled women who are organising for social change in poor countries.
? We Can Make It: Stories of Disabled Women in Developing Countries, edited by Susan Epstein, published 1997 by International Labour Organisation, CH-1211, Geneva 22, Switzerland. A 50 page booklet, available for $13.50, recounting the stories of 25 disabled women from Asia, Africa and Latin America.
? Information about projects & research related to the role of women and community-based rehabilitation is available from the International Centre for Advancement of CBR, 146 Stuart St., LaSalle Bldg., Room 235, Queen's University, Kingston, Ontario, Canada K7L 3N6; tel 613 545 6881; fax 613 545 6882; e-mail: icacbr@post.queensu.ca
? Information about projects in the Philippines involving disabled women in cbr is available from Carmen Reyes Zubiaga, Technical Advisor & Acting Executive Director, Disability Resource Center, P.O. Box 877, UNV-UNDP Phnom Penh, Kingdom of Cambodia; fax 368549; e-mail: ncdp@forum.org.kh
Violence
? A new study on the connections between domestic violence & economic growth in Latin American nations was released in 1997 by the Inter-American Development Bank, 1300 New York Ave., N.W., Washington D.C. USA. Tel. 1 202 623 2846. Fax. 1 202 623 1402.
? An overview of U.S. studies & projects on Domestic Violence & Women and Children with Disabilities by Paul B. Feuerstein was published in 1997 by the Milbank Memorial Fund, 645 Madison Ave., New York, NY 10022 USA.
? Fire in the House is a 314 page report of a regional conference on Determinants of Intra-Familial Violence and Strategies for its Elimination, held in Cambodia, organised by UNICEF & the Secretariat of State for Women's Affairs of Cambodia. Violence is interpreted as broadly as possible and includes information about many types of systemic gender discrimination as well, for example that in rural Bangladesh, studies showed malnutrition was found to be three times more common among girls than boys. Information is presented by authors from Sri Lanka, Japan, Cambodia, Malaysia, Papua New Guinea Philippines, India, Thailand, Bangladesh, and Vietnam. Report available from UNICEF/EAPRO, GAD/CEDC Unit, P.O. Box 2-154, 19 Phra Atit Road, Bangkok 10200, Thailand; tel 662 280-5931; fax 662 280-3563.
Videos
? A number of videos concerning leadership development of people with disabilities have been produced by Mobility International USA, P.O. Box 10767, Eugene, OR 97440 USA; tel 541 343 1284; fax 541 343 6812; e-mail: miusa@ipg.apc.org. Among recent productions are Visions and Voices, a 15 minute overview of the participation of women with disabilities in the UN 4th World Conference on Women, held in Beijing; Loud, Proud & Passionate, a 20 min. video on MIUSA's 1997 Women's Institute on Leadership and Disability and Emerging Leaders, documenting an international exchange and study visit among disabled and non-disabled youths from developed and developing countries.
?Disability and Motherhood is a 25 minute portrait of three women with different disabilities and their children. It explores both the adaptations they use to improve their parenting skills and the prejudice they encountre from the public about their decision to bear children. Available for $149 (purchase only) from Fanlight Productions, 47 Halifax St., Boston, MA, USA, 02130. Fax.:1 617 524 8838.
? Issues & Insights: a World Forum on Women with Disabilities, a two-part video documenting the 1997 International Leadership Forum for Women with Disabilities has been produced by Third Millennium Events, 711 Brent Road, Rockville, MD 20850 USA and will be ready for sale and distribution in early 1998. Information: tel 1 301 838 3031; fax 1 301 838 3029; e-mail: rbbieler@aol.com.
? An International Disability Film & Video Catalogue is being produced by Rehabilitation International and includes chapters on women's issues, disabled children and related topics. Will be available in 1998 from RI, 25 East 21st Street, New York, NY 10010, USA, Fax: 1 (212) 505-0871.
Periodicals
A Special Issue on Women & Girls of the International Rehabilitation Review was produced in 1997 and is available from Rehabilitation International, address above.
Public Education and the Disabled Girl Child
?The Silent Shout
Few public education and awareness materials concerning disability or concerning
the needs of the girl child include girls with disabilities. Therefore, their
needs remain unrecognised and they continue to be last in line to be enrolled
in schools or to receive rehabilitation services.
A model of public education materials inclusive of the disabled girl child
is "The Silent Shout," a new UNICEF film directed by Michael Sporn.
Both the film and the associated public education materials clearly show disabled
girls in school and at a rehabilitation clinic. The Silent Shout was produced
to help children learn about landmines and is part of a UNICEF integrated
strategy aimed at: promoting a ban on landmines; reducing injuries through
awareness; supporting de-mining programs; and rehabilitating children physically
and psycho-socially.
Of the estimated 2000 people killed or injured by landmines every month, 30
- 40% are children.
At left are some examples from the Silent Shout materials which include illustrations
of girls who have been injured by landmines and are now receiving services
to reintegrate them into their community.
For more information about the film or the UNICEF public education materials,
contact: UNICEF, Division of Communications, 3 UN Plaza, New York, NY 10017
USA. E-mail: pubdoc@unicef.org and web site: www.unicef.org
ONE IN TEN
Volume 17 - 1997
EDITOR
o Rosangela Berman-Bieler
GUEST EDITOR
o Kathy Martinez
REHABILITATION INTERNATIONAL/UNICEF
COLLABORATION ON CHILDHOOD DISABILITIES
o Gulbadan Habibi, Project Officer,
Child Protection Section, UNICEF
o Susan Parker, Secretary General, RI
UNICEF HOUSE
3 UN Plaza, New York, NY, 10017, USA, Fax: 1 (212) 824-6483
REHABILITATION INTERNATIONAL
25 East 21st Street, New York, NY 10010, USA, Fax: 1 (212) 505-0871