The Only Parent in the Neighbourhood:
Mothering and Women with Disabilities
(PDF downloadable format)
In truth, our society is not adequately supportive of any parent. There is not real training for parenthood, so the reality comes as a surprise to most of us. Parenthood is the hardest job anyone will ever have. Yet the physically limited parent may be the only parent in the neighbourhood toward whom the community directs its anxiety about the difficulties of the job. Joann Lemaistre, "Parenting", With The Power Of Each Breath
As Lemaistre indicates, surviving as a woman who has both children
and a disability in a society that sees our disabilities before
it sees our womanhood requires ingenuity and strong surviVal skills. However, a discussion of the issue of parenting for women
with disAbilities must be broader than a simple discussion of
such skills. The means of coping must be discussed and the women
who have done it must be celebrated other issues must also be
discussed: the right to choose whether to have a child or not;
the right to adopt; the right to have disabilities and keep our
children; the right to community support in our mothering.
This
position paper is based on the results of DAWN Canada's 1988 survey
of women with disAbilities. The project included the distribution
of 1,200 questionnaires, which were returned by 245 women with
a variety of disabilities and meetings with approximately fifty
of the respondents from the
Reproductive
Rights:
In
the first two papers in this series, "Who Do We Think We Are:
Self-Image And Women with disAbilities"
and "Beating The 'Odds': Violence And Women with disAbilities"
(both Ridington 1989) we mentioned the
urgent need for truly accessible sex education materials and birth
control information. Our sexual relationships should be ones that
we choose, out of our own needs and desires. They can not be so
if we have been denied information about sexuality. Similarly,
a choice to be a parent must be an informed choice.
We
must have access to appropriate birth control information and
materials so that our pregnancies can be planned and chosen. Beyond
that, should birth control fail, we must --like all women --have
the right to terminate a pregnancy when we decide that
abortion is necessary.
For
women with disAbilities, the term "reproductive rights" encompasses
more than the right of access to birth control and the right of
choice. It also includes the right not to have fetuses taken from
us against our will, and the right to retain our wombs, our ovaries,
our fallopian tubes.
It
includes the right not to have our bodies used as a testing ground
for unproven contraceptives and questionable new reproductive
technologies, and the right not to be injected with harmful hormones
that disrupt our normal bodily functions in order to "simplify"
caring for us.1
Medical
science uses us as the objects of tests, but it also strives to
keep us from replicating ourselves. Practitioners seek to interrupt
pregnancies which could perpetuate us; they seek to destroy what
we have created, if it is formed in our image. New reproductive
technologies have simplified the identification of foetuses with disAbilities; our society's concept that disability
is abnormal and undesirable has created an expectation that identification
must result in elimination. We would reiterate the question disabled
activist Marsha Saxton posed to conference examining the concept
of a "handicapped-free society": "why should
a pre-natal screening revealing a disabled foetus be automatically followed by a systemic abortion?" (see Barile 1988). Certainly, we should be informed about all available
medical tests, and told the results of all the tests we choose
to undergo. We should also be put in contact with parents of children
who have the same disability and with existing support groups.
We can then consider all this information when making our decisions.
As
feminists, we know that a woman's right to control her body is
fundamental to women's equality. Yet other feminists have been
slow to support the right of women with disAbilities to control
our bodies. Perhaps now that chorionic villi sampling (cvs)
can be used to detect the sex of the foetus in the first trimester, making abortion for the purposes of sexual
selection possible, feminists will come to understand the issue
from our perspective. For it is not women on our own who are choosing to abort foetuses that will become female infants. According to a doctor who performs such tests and appeared on CBC-Radio's
Cross-. Country Checkup, on
Some
"reproductive technologies" may be new, but forced sterilization
is not. As Anne Finger points out, compulsory and coerced sterilization
of the disabled began in the late 19th century. Its most enthusiastic
practitioners were the Nazis. (Finger 1985: 294-297). Women with mobility impairments and
those of us who have epilepsy and other neurological disorders
have been sterilized. So have individuals who are deaf: they were
seen as "incomplete" humans because they "had no language."2
Sterilization
of women with disAbilities remains a common medical procedure.
It is a manifestation of the attitude that persons with disAbilities
are asexual, or should be. (see Ridington 1989a) we lose our
right to choose when our reproductive organs can be removed at
the will of caregivers, lawyers, parents, or medical practitioners.
In
the interviews conducted with women with disAbilities during the
summer of 1988, several women told of their pain at having had
their right to parent removed. A young woman i will call "Shirley" lost that right when she was only seventeen.
She has cerebral palsy and uses a wheelchair. She is in her mid
twenties, well-groomed, articulate and attractive. She loves babies.
She would like to have her own children, but has had a hysterectomy.
During the interview, she said, "i would
adopt if the right man came along." he came along once and they
planned marriage. He was killed in a motorcycle accident four
years ago. She has not met his like again. The hysterectomy was
done when Shirley was living in a group home. At the time, her
menstrual flow was very heavy. They put her on six different kinds
of hormones but nothing worked so then they removed her uterus.
Shirley
would love to work in a day-care, but has been told that her disability
precludes it; she can't lift children. But she does look after
the children of friends ranging from small babies to a hyperactive
eight-year old. She told us a long story about a friend whose
wife had left him with a very small infant while she went away
for the weekend. Within hours, he was pounding on Shirley's door
asking for help. She went home with him, warming the cold, damp
baby under her shawl on the way. She found clean diapers, blankets
and food, and had both father and baby calmed down in short order.
Shirley
talked of caring for children with the same enthusiasm and caring
that a poet or a fine craftsperson has when she speaks of her
work. It was obvious that it was what she would choose to do,
above all else. But she grew up with a disability, and went to
a special school within a children's hospital. She had learned
to be compliant, and to accept the verdicts of physicians. Shirley
was just entering womanhood when her womb was taken from her.
Would the doctor who made her barren at the beginning of her reproductive
years have sterilized a non-disabled teen-ager who had the same
symptoms?
"Janet"
also lost her right to parent, not at the hands of doctors, but
at the fists of her ex-husband. He beat her when she was pregnant.
When i worked at
It's
been called the "poor man's abortion." like Shirley, Janet was
still in her teens when she became sterile.
I lost the only child i had a chance of having. He was still within me after five
months. Then my husband was abusing and battering me around. When
it came to the baby, i carried it for
almost five months, and then it died. It was dead inside me. .., i could never have kids, and i was told this right from the time i was 20 on. And to me, it's always been painful, like. When
mother's day comes around. If you are told at 19 that you
can't have kids for the rest of your life, it just throws a cold
damper on your insides. I have the pain every now and again of
realizing i can't have kids. .. For my own gratification, knowing the
hell i went through. ..its not that i don't feel complete, i just feel the hurt and the pain of not being able to be
a mum. (from transcript of meeting with
a group of women with disAbilities)
Adoption:
When i talked with Janet and her group, her friends suggested that
she adopt. "whether it is natural or
adoption, you can still be a mother." but Janet had tried that
route, and been denied that possible avenue to motherhood as well.
I found out i cannot because i am on a disability
pension and they will not allow it. ..they will not allow my husband and i to have
a [foster] child in the home because of the very same reason.
You have to have a working income and "a good home environment."
(from same transcript)
Janet
has a disability that she terms "brain damage" as the result of
a bus accident in her early teens. Perhaps the adoption agency
saw that as a barrierto good parenting. We know that other women with disAbilities
have had difficulties in adopting. Those that have been successful
have been told they would only be given a child who is disabled.
We are concerned about the number of children with disAbilities
who are not placed in permanent homes. In many cases, restrictions
on giving out medical histories make adoption difficult or impossible.
We would urge that such restriction be lifted.
However,
we believe that the decision to parent a child who may have special
needs should be up to the adoptive mother, rather than the agency.
If the agency is concerned that the prospective mother's disability
may cause her difficulty in parenting, it would seem logical that
they give her a child they consider easy to parent. It is that
they Value children with disAbilities less, or are simply glad
to get rid of "difficult" children?
In
recent years, some people with disAbilities --generally couples
in "stable marriages" --have been successful in adopting, with
no restrictions as to whether the child has or does not have a
disability. Valerie Richardson, who is mobility impaired, and
her husband tom, who has epilepsy and haemoplegia,
spoke at the "parenting" workshop during the 1988 conference of
the Alberta Committee of Disabled Citizens (ACDC). They have an
adopted son, now four, and are applying to adopt a daughter. They
found a friendly social worker and were given some help from the
government. Unfortunately, it was cut off after the first year.
Still, the
Surely,
applicants who seek to adopt children should be judged on their
ability to give a child a caring home. Disability should be reason
for providing any necessary support services to adoptive parents.
It should not be a reason for refusing them a child.
Pregnancy:
For
those of us who choose to become pregnant, and are successful
in conceiving, pregnancy can be an affirmation of womanhood. Donna Hyler described her feelings in her
article in With The Power Of Each
Breath: A Disabled Woman’s Anthology.
...the possibility that i might be pregnant awakened in me a growing sense of joy
that i had never before felt. A previously
dormant part of me spiritual, physical and psychological was heralding
its existence and making friends with the rest of me. (Hyler 1985: 280)
Pregnancy
can bring back a pride in our bodies that has been negated. It
also can be problematic. Girls with disAbilities and adolescents
who become disabled frequently are told not to expect to become
mothers. When they find out that motherhood is impending, they
may doubt their ability to bear a child, and to parent her. There
are few role models and fewer support systems. Friends, relatives
and health professionals may be critical and overly solicitous.
Megan Kirshbaum, executive director of a support group for parents
with disAbilities in
...some
of the most successful relationships with medical providers involved
a kind of collaboration in which the woman's knowledge of her
own body and functioning was acknowledged and respected."
(Kirshbaum 1988: 9)
We are, after all, the authorities on the workings of the bodies we live in, but this is not recognized in most doctor patient relationships. Physicians who can collaborate as Kirshbaum suggests are great allies; unfortunately, they are rare. Many doctors may have difficulty dealing with women who are both pregnant and disabled. We blur their categories. Physicians lack models for dealing with us. Many have a hard time saying, "i don't know how to deal with this, but I'll try to find out as much as i can and help you as best i can." their lack of knowledge may trigger insecurities, which become expressed in authoritarian behaviours. Their dogmatism then reinforces our own doubts about our abilities to mother. Rather than deal with us honestly, they may urge us to abort, or be unsympathetic. "Ruth", who is post-polio, told me of her pregnancy. When she needed an emergency caesarean, her doctor accused her of "wanting the easy way out." she went on to have two healthy boys, and to be a foster mother to 13 kids.
Although
a new "female procedures chair system" is being manufactured, 3, most gynecological examining tables are not designed
for use by women who are mobility impaired. Transferring on to
them is difficult, and sometimes dangerous.4 maternity
wards may be full of hurdles: transferring to the trolleys that
carry patients into the labour room;
getting access to the baby in a lying-in arrangement; using an
inaccessible washroom. Kirshbaum tells of a pregnant paraplegic woman who was asked
to stand for "just a minute" on a scale, and of interference with
the role of an interpreter during labour.
(Kirshbaum 1988:9) although proportionately we may well spend
more time in them than non-disAbled womens hospital facilities are not designed with women with disAbilities
in mind.
Pregnancy
may exacerbate our disabilities. For example, multiple sclerosis,
which generally becomes apparent in young adulthood, often involves
bladder problems. Pregnancy puts strain on the bladder. The result
can be toxemia. "llz," who also participated in our interviews, had two
small children and was pregnant with a third when her ms manifested
itself. She became extremely toxic and gained sixty pounds. She
was in and out of hospital for the last six months of her pregnancy.
The pregnancy went on for ten months. She is Catholic, and wanted
more children. She decided it was too risky.
Making
mothering accessible:
Eighty-eight
of the 245 women who returned our questionnaires indicated that
they have children. Not all of them had been disabled at the time
that their children were born. Thirty-eight women, or 43% of the
responding mothers, gave birth (or adopted) before they became
disabled. Nine had children both before their disability became
apparent and after. Forty-one (47%) became mothers while they
had a disability.
The
highest number (31) were mothers of two children. Twenty-eight had
one, and twenty were mothers of three. Mothers of many children
responded as well. Three women had four, two had five, and there
was the mother of six. Most respondents were mothers of children
already grown; 78 children were listed in the over eighteen years category. Only 9 of the children listed were still pre-schoolers,
and thirty-five were of school age. This does not mean that women
with disAbilities are no longer having children. In fact, the
likelihood that we will parent probably is increasing. As Megan Kirshbaum points out, the fact that
young adults with disAbilities are: ...integrating into the community,
forming relationships, becoming sexually active, expecting a full
life [is] leading to a rapid increase in the number of disabled
parents." (Kirshbaum 1988:9)
The
fact that our respondents are more likely to be mothers of older
children in all likelihood reflects the fact that young mothers
with disAbilities are over-burdened. They have no time to get
involved with disabled consumers' associations and organizations
of women with disAbilities. These organizations were a primary
source of names for the distribution of questionnaire.
The
mothers who did respond had not found motherhood easy. Question
fifteen of our questionnaire asked "were any of the following
a problem when you were raising your children" and listed six
items. The percentage of mothers who answered, "yes" for each item is as follows (many mothers checked more
than one item):
- Housing
25%
- Transportation
for yourself 36%
- Transportation
for children 25%
- Child
care 33%
- Household
tasks 32%
-
Lack of social/medical workers who understood your situation 33%
Because
there is a dearth of information, of resources and of support
services, each new parent has had to resolve her problems on her
own. Val Richardson adopted her child and then found that the
manufacturers of baby gear have not yet realized that parents
with disAbilities exist. She designed an appropriate crib, and
had a tray built onto her wheelchair to facilitate feeding and
diaper changing. Parents notice that their children adjust to
their parents' disabilities very early. As Val Richardson said
in her workshop, "
We
do get through it, but resources would certainly make it easier.
"Patsy", a mother of two, is mobility impaired and lacks upper
body strength. She is very competent; I met her in her office
where she manages a centre for people with disAbilities. But she
had a hard time when her children were little. She could not carry
them. She had no knowledge of any support system and no awareness
of how to deal with the babies; "I just groped through myself."
she went on to say:
I was scared to be alone with the
babies until they were walking, then when they were I couldn't
get things like cleaning supplies out of the way, so I could never
leave them alone, had to watch them 24 hours a day. A man would
never understand. With the first one, I felt extremely burdened,
then guilty. By the second child, I had a better attitude. But
the support simply isn't there for disabled mothers. (from notes of interview)
Despite
the lack of resources, we not only survive, but find creative
and effective solutions. "liz"
also encountered problems as a mother of three when she developed
MS. She began to lose her sight, "but never in both eyes at once
until later." she found that "carrying the kids was hard." child
care was another problem, as was transportation. She could not
drive because of her eyes. Her husband drove her places when he
could but she had to do a lot of things when he was not home.
Like many of our respondents, she relied on her children for help,
and then felt guilty about it. In her words, "the six-year old
looked after the house and the 3 year old and the dog. I had to
work on letting them still be kids."
Like
Valerie, liz invented solutions. In the winter,
she made the girls red parkas so she could see them easily against
the snow. Her problem is a common one. It is difficult to keep
track of active children when you cannot see them clearly, or
when you cannot run after them. Children of two learn that they
can outrun a wheelchair. They sense that their mum cannot find
them if they sneak into dark corners. When it suits their purposes,
they take advantage. For this reason, the pre-school years can
be the most difficult.
Gail,
who developed ms at sixteen, found that things got more difficult
when her daughter got too heavy for her to lift.
I went through the pregnancy, no problem at all. In fact for the first two years I was able to carry her around, it was a normal situation. It was just when she was turning about 3 and a half, 4 years old, I was finding it more of a problem. My balance started going; that was my problem from the beginning but it started to be a little more than usual seriousness. She was taking swimming lessons from about 4 months old, but after she was about 3 and a half years old I could not continue on because I didn't feel safe with her. I couldn't lift her up, I was always afraid of falling over. In fact I did do that a couple of times, fell over on top of her. And that wasn't in swimming, that was just getting out of the car and walking up to the bank. ...I guess I was relieved in a way, she still held together even though I fell on her, she took it in stride. (from transcript of tape of interview)
Lack
of knowledge and information forces parents to develop their own
ways of coping. Fortunately, we seem to be brilliantly adept at
doing that. It seems that our children are also resourceful. They
follow our lead, and the process becomes reciprocal.
Megan Kirshbaum and her organization, "through the looking glass,"
have studied and videotaped the interaction of parents with disAbilities
and their infants during the babies' first year. They seek to
"describe the dance between disabled mother and infant --the mutuality,
reciprocity as it occurs in caretaking and play." (1988: 10) for
example, their videotapes show the co-operation between a mother
with paraplegia and her baby. The mother's problems with balance
meant that she had to lift him with one hand; at one month of
age, he would adapt by curling up like a kitten and remaining
very still during the lift." as time progressed, the co-operation
intensified. Kirshbaum and her co-workers also found that infants were
more patient with their disabled parent than with other caregivers
(1988: 11).
Having
access to such information is vital. We need to know how other
mothers and children have choreographed their "dance". At present,
there is no compendium of knowledge that can help us when we are
struggling. The dance is redeveloped step by step as each new
mother comes on stage.
Communities
and governments provide few resources. In most regions of the
country, some services exist for parents of children with disAbilities.
Yet there is little awareness that people with disAbilities are
also parents.
Child
care is expensive, and the best care is very expensive indeed.
Many good centres require parent involvement, and no parents want to
leave their child in a centre they have not examined carefully.
We have all heard or read reports about children who are abused
and neglected by caregivers; we do not want that to happen to
our child. However, many centres are inaccessible. Few provide accessible transportation
to enable mothers to accompany their children. Child care activists
have only begun to address the needs of parents of children with
disAbilities. The concerns of parents who themselves have disabilities
were not mentioned during the Canadian Day Care Advocacy Association's
1988 conference. 5
The
"neighbourhood hub" model, which was mentioned during that
conference, 6 is one that with input from mothers who
have disabilities could provide a good resource. It combines a
child care centre with a library, a drop-in centre, a toy library,
a newsletter, and conferences and workshops. Videotapes like those
made at "through the looking glass" and other information could
be included in the library. Infant-care items adapted for specific
needs could be rented or traded there. If made physically accessible,
and with information provided in all necessary formats, the "neighbourhood hub" could be a source of information and relief.
At
present, community services used by most parents - community centres,
family drop-ins, swimming pools and parks, or even schools --may
present barriers to parents in wheelchairs or parents who use
guide-dogs and canes. Most of us cope, struggling by ourselves
or relying on friends and relatives. Some, like liz,
have supportive spouses.
Even
where services exist, many mothers cannot get to them. As Rawnie Dunn points out in her "discussion paper on parenting", (1988:
6) transit services for the disabled may not allow small children
on board. This makes it impossible for mothers with disAbilities
to take their infants and toddlers with them, even when a child
requires a medical check-up. In parenting, as in so many things,
it is not our disabilities that create difficulties; it is the
barriers presented by an inaccessible world.
The
resourcefulness and the endurance of mothers with disAbilities
illuminated the answers to another of our questions: "if you resolved
any of these problems, please take a minute to tell us how you
did this." one woman mentioned that she had started a mobility
bus and is still on the board that runs it. Others wrote:
I read as much as I could on the
subject, and experimented with various common sense solutions.
Practical experience from my work as a nurse came in handy, and
I helped with formation of a self-help group in the city.
I became aggressive and learned
how to vocalize my concerns and I became adapted to most situations.
Fortunately, I own and drive a
car. There have been times when I couldn't even open a car door
without severe pain, but I have persevered and managed to get
through the difficult times. I have refused to give in to the
disease and try to live an active life, not matter how severe
the pain and the desire to give in to it. (mother of two school-age children; she has arthritis)
I insisted that my child be provided
transportation from kindergarten to day-care even though seats
were reserved for social service clients -- stubbornness on my
part.
Many
mentioned the help they got from their kids. Married women on
the whole seemed to find it easier. They generally had more money;
some of them could hire help. One "adapted living - house,
car, homemaker help." three learned to drive and bought cars (one
of them was planning to leave, but waited until she had her license).
Some married mothers spoke of the help and support they received
from their spouses. Yet there were more whom,
despite the presence of a partner, gave answers that indicated
they resolved things on their own. One answered, "made special
arrangements with playschool, hired my own, never did solve it,"
one stated simply, "they grew up, thank god."
Although
women who were in relationships were generally less poor than
single mothers, some women found marriage a financial impediment.
Wives are seen as dependents by many government social services,
so wives of men who are themselves on pensions or in low-paying
jobs suffer. One woman is struggling to make her house accessible,
but lacks money:
I have made a few' renovations
for access when I could get money together for it. Husband's income
is too high to qualify for help -- no disability pension - catch 22 situation."
Some
women became resigned, and stopped seeking assistance. "
I didn't do tasks I was unable to do," one wrote, and another
just "did what we could with what was available --used neighours and friends or did without." some were forced to give up for a
while:
I left home and went to an institution
in 1981 because township would no longer pay for my homemaker
attendant to come in and my husband at the time worked 3 shifts.
.. I could not be left alone.
(this respondent is now remarried, and living at home.)
For others, the struggle continues; " I'm still trying, still fighting with
While I found no ideal solutions
to above problems, I managed to make arrangements. ..hired domestic help, relying on friends, mate, public transportation,
taxis ...the hardest part is finding someone (anyone) who understands
enough to really help one cope. Perhaps this is simply asking
too much? Sometimes the solution must come from inner strength.
Single
Parenting:
Mothering isn't easy; single parenting hardly ever is. Mothering with a disability is always difficult, and single parenting when you have a disability is tough indeed. Yet over half of the mothers in our sample (48/88) are, or have been, single parents? Their problems are the same as those of women who are partnered, but they are more likely to be exacerbated by poverty.
As graph 1: "Income Level Of
Mothers By Relationship Status" (see Appendix A) shows,
similar numbers of single parents and mothers who are partnered
have low incomes. In both groups, ten women report incomes under
$5,000. However, graph 2: "Source Of
Income Of Mothers By Relationship Status" (see Appendix
B) shows that 25% of partnered mothers are supported by their
spouses and the total family income in many cases may be higher.
The median income for both groups of mothers is between $10,000
and $15,000 and eleven of these women have incomes of over $20,000.
Only 30 of the 40 mothers in relationships answered the question
on income; only one single mother did not report her income.
Seventeen
single mothers (36%) have incomes of under $10,000 and 25 (53%)
earn less than $15,000. Only 17% earn over $20,000. This group
of mothers, which includes widows, separated and divorced women,
and never married women, support themselves and, in many cases,
their children, on their low incomes.
When
asked to give their main source of income, many women note more
than one category. For this reason, the information contained
in graph 2 is based on a higher number that used for graph 1.
Fifty-six answers were given by the 20 mothers living with a partner
and 53 were received from single women. This basis, 20% of single
mothers work full-time while only 12.5% of partnered mothers do.
Fifty-eight percent of the single mothers (31 of the 47) rely
to some extent on government
Assistance (pensions, welfare benefits,
etc.), while only 23% of mothers who are in a relationship receive
government payments. Out of 35 divorced and separated
mothers, only 3 receive support payments from a former spouse.
One widow survives on insurance payments.
The
single mothers cope with poverty and with other difficulties.
They get very few support services from governments or from their
communities. In their replies to our question, "if you resolved
any of these problems, please take a
Minute
to tell us how you did this," single mothers proved Lemaistre's point: communities and governments do little to help parents with
disAbilities meet challenges, "yet the physically limited parent
may be the only parent in the neighbourhood toward whom the community directs its anxiety about the difficulties
of the job."
Self-will and determination to
stay active and I was able to accomplish [as] many projects as I possibly could.
I relied on myself, it was difficult. (single mother of 5, mobility impaired)
Re: housing --not resolved; just
continued to pay 1/2 to 3/4 of monthly income for housing while
raising my children alone. Re: child care; my parents looked after
children from divorce for five years; then I packed their lunches
and phoned them after school at home daily to check up on them.
Emergencies
are the dread of every mother. For women who have restricted mobility
and live alone with their children, they are a nightmare. In 1985, i interviewed a young mother i called "melody" for an article that appeared in Resoures For Research (Ridington: 1985).
She told me about the night her youngest child had acute bronchitis,
and needed hospitalization.
I
was just out of the rehab centre. I had no money, couldn't afford
an ambulance. I had my mum's car outside, because I'd been being
chauffeured around in it, but it didn't have hand controls. But i had to get her to the hospital. I
carried her over my shoulder, balancing her while i tried to crutch my way to the car. You can imagine me trying to
put her in the car, trying to get the door open with her and my
crutches, and my no-good hands. Then i drove with my feet on the controls, but no real idea of how much i was pressing on the accelerator. I
was scared stiff somebody was going to drive right through me.
But i got her there.
Housing
that is livable, affordable and accessible is a problem for all
people with disAbilities. There isn't enough of it. For single
mothers, it can be an insurmountable problem.
Many
apartments that are supposedly accessible have only one accessible
bedroom. How does a mother in a chair reach her children to tuck
them in? To take their temperature or clean
up their vomit? Or to get them out in
an emergency?
Melody lives in a so-called "handicapped"
suite with her two daughters. She explained why the suite didn't
meet her needs:
There is an assumption that disabled
people will live only with an aide. A spouse, a relative, or kids
-you're not expected to have those. And the garbage, the laundry
rooms, the fire doors are all-inaccessible. When you're holding
a small child, it's hard to hold one of those heavy doors and
push your chair through. There's a three or four inch step up
to the laundry room, and you have to open the door with a key.
So I can do only laundry if Terri [her daughter] is around. (Ridington 1985)
Many
of us require services, like medical specialists and rehabilitation centres, that are only available
in the cities. As housing in major cities becomes more and more
expensive, choices become fewer and fewer. The trend to "user
pay" philosophies and privatization of social services is making
it still more difficult to get access to resources. No wonder
many mothers spoke of survival rather than resolution.
Help with my son was never available
so he had a hard childhood.
I
really didn't [resolve], just had to struggle with the situation.
Never! Long term care threatened
to take my child away; also said he had to quit boy scouts to
look after me. L.T.C. would not let homemakers cook, clean or
wash for him (he was eleven).
Kept seeking assistance through
various agencies. Live the best I can under any
condition; close my eyes to the rest.
Several
sent a succinct message; "I struggled until the kids grew up",
or "I survived as best I could."
Single parents who are native or members of "visible minority" groups
as well as having disabilities, may feel the "anxiety of the community"
most directly. Edna coffin is a native woman with a
mobility impairment. She was a single parent for several
years. Her "demographics" are the kind that
seem to push social workers' buttons. In a workshop on
parenting at the
Such
stories are common; cases where single mothers with disAbilities
received thoughtful support are not. Some single mothers got involved
with agencies that could help, or formed their own groups when
none existed. "I solved [my] housing problem by getting involved
with Ontario Housing." wrote one;
From
another, "I lobbied and organized for housing access."
Some
didn't make it; others had very difficult times indeed. One woman
answered, "My sister adopted my son." Another stated, "I was in
a mental hospital for a nervous breakdown for a while."
Coping
with Violence:
More
than half of the single mothers with disAbilities who responded
to our survey not only had to deal with problems of transportation,
accommodation, child care and the like; they had to deal with
the residue of violence in their own lives and in the lives of
their children. We did not ask women who were separated or divorced
why their marriage broke up. Our data, however, allowed us to
compare the rates of violence experienced by mothers when compared
to women who had never parented. We found the rate of violence
for all mothers (40 out of 88, or 45%) to be somewhat higher than
the overall rate of reported violence for all respondents (40%).
We
also compared violence experienced by women who were currently
in relationships with that experienced by those who had separated
and divorced for mothers who were in a relationship, the rate
of violence was 23%; the rate of abuse by a spouse was 13%. Mothers,
in contrast, had a 47% rate of abuse by a spouse. Overall, 64%
of them had experienced violence, whether by a spouse, a parent,
or someone else. Eleven
Women
listed more than one assailant. One mobility impaired mother of
two listed four assailants: parent, spouse, service provider and
caregiver. The rate increased for those who were not currently
in a relationship: almost two-thirds (30 out of 48, or 63%) have
divorced, separated, widowed or single (never-married) mothers
had experienced violence.
Regardless
of their relationship status, sixty-five percent of all the mothers
who reported violence (26/40) named a-spouse or ex-spouse as a
perpetrator. Divorced, single, remarried and widowed mothers all
had higher rates of spousal abuse than did women currently in
a relationship. But five mothers continued to live with a partner
or spouse who had perpetrated violence against them.
The high rate of abuse by spouses suggests that many mothers with disAbilities left --or were forced out of --violent relationships. Re-integrating a life after violence, even when the difficulties are not increased by the lack of resources for mothers with disAbilities, is an arduous task. Children who have known violence can be difficult to mother. In "beating the 'odds': violence and women with disAbilities", we met Clare who is blind. Her husband's sexual abuse of her two young daughters broke up the family. Clare is very poor and says she feels very isolated; "i have no real social life." the kids are now in school all day, but they still show signs of the abuse. The younger daughter is having petitmal seizures. She is in a "special" class, and feels a lot of stress -"she just blanks out, and she gets very high temperatures."
Isolation:
The
lack of social contacts and support that Clare lamented is a real
problem for many mothers with disAbilities. Mentioned
the need for community, for a chance to learn from those who have
passed along our path before us. Some mothers we have spoke
of another kind of isolation: they told us of estrangement imposed
on them by those we should be able to trust. Such neglect is a
form of psychological abuse. We can be isolated even when we are
surrounded by people, if they are insensitive and neglectful of
our needs.
Isolation
and despair led "Louise", a mother with ms and asthma, to try
to commit suicide three times. Her body, her home and her family
life were deteriorating. Improper medication had exacerbated her
disabilities to the point where she was "having seizures, talking
nonsense, feeling burning sensations," she went down to 62 pounds.
It was painful to eat; her bowels were so backed up "my feces
were up around my heart." she was paralyzed for two years, and
in bad shape for five. When she could no longer walk, she was
put on a couch in the basement; she spent years down there, in
a room with no windows. She felt very isolated and did not understand
why she was put there, "I don't know where my husband's head was."
her boys were afraid of her dying, "I don't know how the people
around me put up with
Her
children have been damaged by it all. Her 12 year old is "mentally
disturbed" and can't read yet. She is still in the marriage. Now
she is walking, struggling to keep her home care, and insisting
that the boys have a year off housework to make up for the years
when she had to rely on them for survival.
Children
as Helpers:
Mothers
spoke and wrote of their fears about the effects of their disabilities
on their children. They worried about being dependent on their
kids for care. They thought they were denying their children a
proper childhood. They were concerned that their children’s friends
would tease them about their "weird" mother. They wondered how
to deal with kids who felt responsible for the disability, as
many did.
The
question of whether it harms children to have to do more chores
than their peers is a moot one. Most parents at the ACDC parenting
workshop felt guilty about making demands on their children. Certainly,
kids must be allowed to be kids. They should have time for school
work, time to form friendships, time to lie on their bellies and
dream, if they want to do so. Childhood must not be denied them,
and they should not be used as servants and 24-hour attendants.
The presence of children should not be an excuse for social agencies
to refuse to provide needed help.
However,
if children know they are loved and that their efforts are appreciated,
it surely does no harm for them to learn early in life that others
must depend on them, and that they must take as well as give.
In a world were individualism and selfishness are seen as prerequisites
for "success", our children have greater opportunities to learn
to be responsive and responsible. In a world of hierarchy, we
can show them the need for the web of interconnectedness. These
are qualities that women traditionally Value, and rightly so.
They result in the non-hierarchical world view that Carol Gilligan
has described in her book, In A Different Voice(1982: 62-63).
Since relationships, when cast
in the image of hierarchy, appear inherently unstable and morally
problematic, their transposition into the image of web changes
an order of inequality into a structure of interconnection. ...the
experiences of inequality and interconnection, inherent in the
relation of parent and child, then give rise to the ethics of
justice and care, the ideals of human relationship-- the vision
that self and other will be treated as of equal worth, that despite
difference in power, things will be fair; the vision that everyone
will be responded to and included, that no one will be left alone
or hurt.
What
better vision to give our children, to allow them to grow into
the kind of human beings who can solve the social and environmental
problems that exist now and which will no doubt get more complex
as they mature?
Adolescence:
Mothers
with disAbilities may find their children's adolescence trying.
Most mothers do, and having a fifteen-year old six-footer tower
over your chair as you tell him he's grounded doesn't make it
easier. As "Susan" put it during our interview, "it is hard to
stand up to them when you're sitting down all the time." she has
a degenerative and genetic disability, and has been in a chair
for three years. Her daughter is solicitous, and wants to stay
home and help all the time: "I have to push her out into the world."
but her sons are different. They are struggling to come to terms
with the changes Susan's disability has made to their lives. She
remarked;
I truly think it is harder on them
than on me. I would like to find a support group for them. I think
a lot of it is that they are afraid they might get it. Right now
they've both been tested and they are all right. But that doesn't
mean they won't develop it somewhere down the line. There is no
test for the gene. They don't know enough about it."
Young
people who must confront the fact that a disability is genetic
may bear resentment; "what did you do to me, giving me this to
cope with?" Susan continued:
They have a lot of anger, because
their mother can't do so many things. They see the TV moms and
expect that, you know, bobbing around like Clare Huxtable,
law degree in one hand, vacuum in the other. It's not very real.
They want everything other teen-agers have, in families where
both parents are working. My husband is unemployed. They can't
understand why i can't go out and work.
They look in the paper and say, "hey mum, there’s a job for you."
but I have really low energy because of my disability. If I don't
feel good, they have to cook for themselves. They get mad. There
is no support; unless you can contact someone you know who's been
through it.
We
have to be very secure in our identities and in our parenting
skills to respond to our children's anger and their concerns without
feeling guilt or grief. Again, support groups and knowledge of
the way other parents have handled such situations would be helpful.
Again, such resources are rare.
Role
Models:
We
heard and read stories of success as well as the stories of struggle.
We talked to "Gail", who chose to leave her marriage because she
had outgrown it. She and her former husband share custody of their
daughter, and they have made it work very well. We talked about
her parenting during our interview. I felt admiration for the
way she had handled a situation that affects many families, and
is always difficult for children and parents. When she decided
to leave the relationship she said,
"Do whatever you want, you can
hate me, but don't do it in front of [daughter]." Because
I have a six year old daughter now. And I said, she is
our priority, we've got to focus on her, and never mind what problems
we have. I've found since then, as far as my ex goes, we get along
better now, we just couldn't live together. . Because
now we have that one focus, our daughter. She was there
when he moved out. In the truck and wherever they went, driving
to his place, which is maybe five minutes from where we live,
in a vicinity that is really familiar
to her. The thing that really pleases me is that our friends,
the majority of them, as far as the kids and such they sort of
continue on acting just like we had been before, except that [ex-husband]
doesn't live here. I think that helped a lot with my daughter,
the fact that they took it in stride. I talked to the day care
worker at the time, the fact that this was happening, that she
might have a bit of change in her reaction. And actually I was
told that the day after [her dad] moved out she was colouring by herself and very quiet, not too much mingling with the other
kids, but that was only for one day. She can phone him whenever
she wants, there's very good accessibility. There's no "no, you
can't come over this time." in fact she's with him now, his cousin's
getting married. (from transcript of
tape of interview)
Our
children can accept us, and will, if we accept ourselves. Fathers
with disAbilities who spoke during the ACDC workshop on parenting
worried about their children's reaction to their disabilities.
They grieved the loss of physical strength which they saw as being
necessary for interaction as a father. It may be the only role
model they know. One queried, "how do i deal with my kids when i can't play hockey with them?" he might have been reassured
had he read the results of Frances Buck's study which compared
the psychological health of children with fathers who had and
did not have disabilities. As cited by Rawnie Dunn, he might have buck found that 97% of the children with disabled
fathers reported that they had benefited from having a disabled
father. Many expressed appreciation that their fathers stayed
home and taught them patience, Values, coping skills, and sensitivity
to others. (Dunn 1988:2)
The
fathers who worry because they can't play sports have failed so
far to realize the infinite capacity of kids to adapt and to love.
Edna coffin is athletic, and spoke in the ACDC workshop about
how her kids were "surprised that other parents walked, and that
basketball was played without wheelchairs." Gail's MS has developed
to the point where walking is not always possible, and she recently
got a scooter. Her six-year old daughter loves it.
I know when i got this scooter here, she thought
it was the best thing since sliced bread. She ran off to the park
across the street and said, "my mum's really good now, she's got
a scooter, she can come now," and she was happy that I could come,
because for a short while before I got this, I wasn't able to
get across the street, I just couldn't. She wasn't held back,
but I couldn't go with her. So she was very pleased when I got
the scooter, she could ride on my lap. She's getting a little
taller now so its going to be not too much longer before she can't; I'm always
moving her head to the side so I can see around the corner. (from transcription of tape of interview)
The
Gifts We Grant Our Children:
As
we learn to cope, as we resolve our dilemmas, as we demand our
rights and the respect we should be accorded, we are giving our
children this knowledge as well, our children have opportunities to acquire skills that
are rare in the non-disabled populace. There are practical examples.
Mothers who are deaf told me of their children who are growing
up bilingual, learning American Sign Language (ASL) from their
mothers and spoken language from friends and television. Such
children grow up to be wonderful interpreters; many professional
signers are the children of a deaf parent.
Knowledge
of the complexity and diversity of the ways in which humans gain
and express knowledge, and communicate with each other is a gift
we are perhaps particularly able to give our children. Joann Lemaistre has made this point well.
To our children [parents with disAbilities] can give a zest for human contact and the examples of myriad ways in which it is possible to get going productively when the going gets very tough indeed. To have a hand in producing emotional resilience, compassion, and the willingness to set reasonable goals for oneself is a very fine expression of parental love. Joann Lemaistre (1985: 291)
DAWN Canada Mother's Caucus:
At
the "parenting workshop" co-sponsored by DAWN Canada, the Coalition Of Provincial Organizations Of The Handicapped
(COPOH) and the Canadian Association Of The Deaf (CAD)
Recommendations
The following resolutions brought forward from the parenting workshop held on March 25 -26, 1989 were carried unanimously at the annual general meeting of DAWN Canada on Monday, March 27, 1989:
- That DAWN Canada form a mother's caucus to review the issues identified by the parenting workshop and further develop specific proposals.
- That the mother's caucus act as a liaison with other national consumer groups on issues of concern to disabled mothers, especially those identified in specific recommendations of the parenting workshop.
- That DAWN Canada apply for and
administer a grant for a three to five year project that would
facilitate the resolution of the issues identified by the mother's
caucus/parenting workshop as prioritized, including:
- mother's support groups -information and referral
- technical aids and attendant services -access to daycare and other services -lobbying for increased funding -lobbying for improved legislation
This work may include activities such as:
- research
- position papers
- a resource handbook -community outreach worker(s) -travel
- advocacy work
(the mother's caucus was formed at the annual general meeting and' out of a possible six members, four positions were filled: two other positions were provisionally filled and three members of the mother's caucus were consequently elected to the DAWN Canada board of directors.)
Notes
- The most controversial tests and administration of harmful drugs involve Depo-Provera to women in institutions, and others. For information, contact the Canadian Coalition on Depo-Provera, c/o Health Sharing - 101 Niagra St. - Toronto, Ont. Finger's article (see references) is also good, but the discussion is framed in an American context. The history of the Depo-Provera issue is very different in Canada
- Roger Carter cited this and other examples of the 'Eugenics' arguments to sterelize individuals with disabilites during his presentation in the 'Parenting Workshop', Alberta Committee of Disabled Citizens, Edmonton, Alberta - September, 1988.
- The Midmark Corporation, Medical Products, Versailles, Ohio, USA 45380 - Manufactures a 'Female Procedures Chair' that is designed for easy transfer from a wheelchair, and adjusts to accomodate '98 out of 100 women'. See Cassady, June 'Chair for comfort and convenience' in Accent on Living Winter 1988. The chair costs $11,000 Canadian. Pat Israel of the DAWN Canada executive is working to get it placed in women's health centres in Ontario.
- In the first paper in this series, we described the problems encountered by one woman because of a fall off an examination table. See Ridington, 1989A: 22. See 'Proceedings, Child Care: Meet the Challenge' April 21-25, 1988, Ottawa, Ontario. Ottawa; Health and Welfare Canada.
- As note 3; Discussion of neighbourhood hub model is on p. 41.
- Thirty-eight of the responding mothers are currently living with parters or spouse; four had divorcd and are remarried; eight are widowed; three are single (never married); thirty-five are divorced or separated.
Acknowledgements
Thanks to all of the women with disabilities from across Canada who participated in our project by filling out a long and detailed questionnaire. Some of you needed assistance in getting through it and for that extra effort we are especially grateful to you. Thanks also to those of you who agreed to be interviewed in person and, in this way, enriched the project by sharing even more of your time and the details of your lives with us.
Jillian Ridington, Researcher, and Shirley Masuda, Project Coordinator, worked unceasingly and we owe them many thanks for their hard and creative work, without which this original research would not exist.
The graphs were made possible by C.A. Graham and Associates and Pacific National Vehicle Leasing, and for this we are grateful.
Special thanks is due to our funders, the Secretary of State Department's Disabled Persons Participation Program, Women's Program, and Promotion of Official Languages Branch, whose financial support made this project possible. We are particularly fortunate to have the constant support and encouragement of Glynis Ellerington, our Project Officer (DPPP).
And last but not least, to our angel who has supported us in many ways right from the beginning. THANKS!
Joan Meister
Chairperson
DAWN Canada
REFERENCES
BARILE,
MARIA G. "NEW REPRODUCTIVE TECHNOLOGY." PAPTER PREPARED FOR DAWN
DUNN,
RAWNIE. "DISCUSSION PAPTER FOR DELEGATES." PAPER PREPARED FOR DAWN
FINGER, ANNE. (1985) "CLAIMING ALL OF OUR BODIES: REPRODUCTIVE RIGHTS AND DISABILITY." IN SUSAN E. BROWNIE, DEBRA CONNERS, AND NANCI STERN, EDS. WITH THE POWER OF EACH BREATH: A DISABLED WOMEN’S ANTHOLOGY SAN FRANSICO; CLEISS PRESS. 284-291.
GILLIGAN,
CAROL. (1982) IN A DIFFERENT VOICE: PSYCHOLOGICAL THEORY AND
WOMEN’S DEVELOPMENT.
HYLER, DONNA. (1985) "TO CHOOSE A CHILD." IN SUSAN E. BROWNIE, DEBRA CONNERS, AND NANCI STERN, EDS. WITH THE POWER OF EACH BREATH: A DISABLED WOMEN’S ANTHOLOGY. SAN FRANSISCO; CLEISS PRESS. 280-284.
KIRSHBAUM, MEGAN. (1988) "PARENTS WITH PHYSICAL DISABILITIES AND THEIR BABIES." ZERO TO THREE VOL. 8 #5. (JUNE)
LEMAISTRE, JOANN (1985) "PARENTING" IN SUSAN E BROWNIE, DEBRA CONNERS, AND NANCI STERN, EDS. WITH THE POWER OF EACH BREATH: A DISABLED WOMEN’S ANTHOLOGY. SAN FRANSICO; CLEISS PRESS. 284-291
RIDINGTON,
JILLIAN (1985) "SINGLE-PARENTING IN A WHEELCHAIR: WHAT DO YOU
DO WITH A SICK KID WHEN YOU CAN’T AFFORD AN AMBULANCE AND YOU
CAN’T WALK." WOMEN AND DISABILITIES SPECIAL ISSUE: RESOURCES
FOR FEMINIST RESEARCH. VOL. 14 #1.
(1989A)
"WHO DO WE THINK WE ARE: SELF-IMAGE AND WOMEN WITH DISABILITIES"
(1989B)
"BEATING THE ODDS’: VIOLENCE AND WOMEN WITH DISABILITIES."
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DisAbled Women's Network Canada
Réseau d'action des femmes handicapées du Canada
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