Mothers I will have an abortion. However, it is

Mothers of Children with Down Syndrome:                   

Meanings & Practices of Motherhood

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Ege
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Abstract

YAZILACAK

Introduction

In
this paper, I’d like to analyze practices of motherhood performed by women who
have children with down syndrome comparing one and other. I chose this subject
because for a big part of my life, I have dreamed of being a mother, but I have
been doubtful about giving a birth to a disabled child both for myself and for
him/her. I think, I have overthought this subject and I have decided that if I
will have a chance to predict that I will have a disabled child, probably I
will have an abortion. However, it is not that easy for me to decide and go on
because there are women out there who have children with down syndrome and they
put themselves apart from other mothers. Some women had a chance to decide if
she wanted a child with down syndrome and some did not. No matter what, all of
them experience daily differences from other mothers that made me afraid.

I
started my paper with literature review of relevant topics and then explained methodology
I used. As I finished these introductive parts, empiric findings will be
discussed regarding literature reviews in an order of women’s backgrounds,
their way of explaining motherhood and differentiating their motherhoods, and
finally their attachments to their group of motherhood. At the end, conclusion
part and bibliography took part.

Literature Review

            I find it crucial to define down syndrome
to have a brief information before we start, what it is and what it is not.
According to National Down Syndrome Society (NDSS), down syndrome occurs when an individual has an extra, full or partial,
copy of chromosome 21. Also, NDSS adds some common physical characteristics of
down syndrome are low muscle tone, short height, and a single deep crease at
the center of the palm. However, not every person with down syndrome should
have these characteristics at the same degree. Approximately, 1 baby in 700 has
down syndrome however as mother’s age increases the probability of down
syndrome increases as well. The cause of the extra chromosome which causes down
syndrome is still unknown and the additional copy of the 21 can come from
either the father or the mother. There are 3 types of down syndrome called
“trisomy 21”, “mosaicism” and “translocation”; but I do not think that we need
to know these thoroughly. Both of them are genetic conditions which means they
relate to the genes, but only 1% of all cases of down syndrome are hereditary
which means passing from parent to child and this heredity occurs in
“translocation” type of down syndrome. And lastly on down syndrome, it is a
condition or a syndrome, not a disease.

Monica Cuskelly, Penny Hauser-Cram and Marcia Van Riper have
written an article called “Families of children with Down syndrome: What we
know and what we need to know” and in their research on family functioning they
have realized that majority of this research is conducted with mothers. Because
still mothers of children with down syndrome take the primary role in child
caring, says Rebecca Stores et al. However, Hedov and colleagues found that
fathers of a child with down syndrome take a greater share of the child care
than the fathers of typical children.

With the rising discussions on abortion, importance of
reasons laid about abortion has increased as well. All politicians from various
parties represent various ideologies have different and contradictory, even in
the same party, points of views on abortion. These claims include agitation on
disadvantaged situations, arguments about freedom, religious bases, moral ideas
and so on. While this discussion goes on the government level, the society is
looking for rational explanations for decisions made and the position that
government takes. For example, in Havva Çaha’s article called “Selective
Abortion: The New Face of Eugenics”, she represents the one side of the
society. She quotes on Sharp and Earle’s research as that in 1960’s abortion
was only made as a medical process under mandatory conditions, in 1970s it has
become a contraceptive and with the
improvements in prenatal screening tests, in 1990’s it has started to be a way to get rid of disabled
children. According to Çorbac?o?lu and Yüksel, all over the world, in 56
countries it is legal to have a voluntary abortion until the 12nd
week of the pregnancy. However, in the case of disability or diseases of the fetus
or a threat to the mother’s health, it is extended up to second half of the
pregnancy. Çaha argues, belief in modern medicine’s objectivity and doctors’
ability to decide the best, increases the effect of the doctors and decreases
the mother’s and family’s, on the decision whether have an abortion or not. The
idea of the prenatal screening
tests bring about freedom to
women, and current ideas on aesthetics, and body in the social field drive
women to get rid of disabled babies and give support to eugenics. According to
Faden et al. mentioned in Çaha’s article again, some doctors oppose giving
birth to mental deficiency. Also, the reason lays behind women’s having
abortion in first 3 days after they have learned that they will have a disabled
baby, is doctors’ asserting that the delay by each day
increases risks of an abortion.
This leads to decisions made rapidly, says Masden. All of these support
counter-abortion ideas historically and make some psychological assumptions as
reasons of abortion. I think, Çaha has a narrow and incomprehensive point of
view, however she represents the society in a way. There is an NGO called “The
Food Movement (G?da Hareketi)”, it has published a new with a title “Pregnants,
Attention to the ‘Murder Test'” which share same ideas with Çaha.

            In Stephen
Wilkinson’s article called “Prenatal Screening, Reproductive Choice, And Public
Health”, he has a more comprehensive angle but narrower subject which is
prenatal screening and its aim. First, he starts defining two views, Pure Choice
view and Public Health Pluralism view. Former claims that there is only a
single aim which is providing choice when latter claims improving population
health, improving maternal and fetal health, reducing future health and social
welfare costs and respecting autonomy, in practicable conditions requiring
valid consent and in appropriate conditions providing choice are the aims of
prenatal screening. For me the very interesting part of
this comparison was saying, especially Public Health approach is vulnerable to
the criticism because of the concern about
prenatal screening and abortion to select out disability. However, he says that
there is not much difference in these views regarding negative attitudes to
disability, because prenatal screening system either aims to reduce the
prevalence of disability or to provide choice will end up in abortion. With
whatever concern, if given a choice it is known that most people will choose to
avoid disability. He strengthens is theory with an example from UK on down
syndrome, saying that it has been reported that 90% of down syndrome diagnoses
end in abortion. He argues that, unless the value given to women is changed, it
would be same with the same in potential sex testing in early pregnancy
scenario because the society is sexist, and it is about the message sent. He
handles this subject as a matter of society, not the government actually and
presents the concern that gathers all of these articles’ relevance to my
subject: “One of the main concerns about using prenatal screening and abortion
to ‘select out’ disability is that it is allegedly eugenic and sends out an
unacceptably negative message to and about people with disabilities.” He
continues with Tom Shakespeare’s words claiming that prenatal diagnosis may be
seen as a discrimination against disabled people, because it has a message of
that it would be better if they were not born too. It definitely suggests
negative views towards disabled people. In my opinion, Shakespeare says that
these discussions are not about just born-to-be children but also affect
existing disabled people’s lives and their environments and according to me,
these are the most vital factors in their lives.

            As Claudia
Malacrida defines in her article called “Bodily Practices as Vehicles for Dehumanization
in an Institution for Mental Defectives”, dehumanization is a process of
attributing less human or non-human features to members of a group. For me,
“members of a group” must be underlined because it creates artificial stratas
by differentiating. This attribution permits normally not acceptable treatments
towards dehumanized individuals. Until this time, I tried to explain some
approaches that objectifies disabled people, including people with down
syndrome, as they do not have any autonomy and even as they do not or should
not exist at all.

My starting point of this research paper was my assumption
that not theories in themselves but objectifying and dehumanizing approaches,
in brief their environments’ approaches including father of the child, towards their
children with down syndrome affects their mothers’ understandings of their
motherhoods, their practices and their attachments to other mothers.

Method

            I have used narrative analysis by
conducting interviews to fully understand the way women’s creating their own
meanings about motherhood. I have conducted face-to-face and recorded
interviews with 4 women who have children with down syndrome. The average
duration of the interviews was around 40 minutes, which is way below from what
I expected. All of the interviews occurred at the association which I succeeded
to get in touch and helped me to find my interviewees. Due to the limited time
and inability to leave the city in that time period, no matter how much I
wanted, I was not able to interview mothers from different cities, even though
I aimed to find my interviewees from different associations, only one of them
was eager to meet my need. All interviews were conducted based on the principle
of confidentiality and all interviewees signed a consent form which I prepared
and informs interviewees about recording and expects voluntariness especially.
Since, I do not want to reveal my interviewees’ names, I will use pseudonyms
that I assigned each of them popular names when they have born.

            I had difficulties in leading the
women to deepen their narratives, my aim was to ask less questions and mostly
listen what they narrate. However, I could not think that they do not have much
to say since they have got used to their lives. I guess, questions that I have
prepared were not enough to lead them to depth. Regarding this issue, I should
have give myself more time to rearrange my questions after every interview but
unfortunately, I did not. I had concerns before my interviews about hurting my interviewees’
feelings or causing sadness somehow, maybe by just reminding. One of them had
emotional intensity, however it did not last long and not caused any distance
between us.

1.   
Get to Know Mothers: Their Backgrounds

Tülay
was my first interviewee. She has born in 1962 in Tunceli and she is 55 years
old. She is primary school graduate and barely knows how to read and write. She
has 5 children, one of them is with down syndrome and she calls her son with
down syndrome “sick” and he is 25 years old. She has found out his “situation”
when he has born, and she reject and let go for about 2 months but after she
has talked with a doctor and the doctor has persuaded her to look after her
child saying no one will look after him except you. Also, her child has serious
diseases about thyroids called toxic goiter which causes anger and he has to
use sedatives. She is a divorced mother for 5 years, and their financial
situation is not well. She defines herself “poor” (“dü?kün”). Her mother and
father have passed away about 10 years ago. She has not worked ever. In a regular
day, she says “I am dealing at home”. She gets up, prepares and feeds her son,
then she sends him off to the school and she looks after her grandson while she
tidies up and prepare food for her grandson and son, and finally he comes back
from the school.

Arife
was my second interviewee. She has born in 1974 in ?stanbul and she is 43 years
old. She is secondary school dropout. She has 3 children and the eldest is with
down syndrome and he is 19 years old. She said “…and I have 2 healthy children”
about her children. She is married to the father of children and has married
when she was 23. They have learned their son’s being with down syndrome after
birth when he got sick in his first 40 days and she says that when they heard
it, “it was like world falling apart, while I was expecting healthy child.” She
mentions her son as “handsome, not like children with down syndrome” and
continues “Doctors said maybe it has not affected his intelligence, but it did
not happen as such.” He does not have any diseases. Arife’s family’s financial
situation is well and she says we are fine. She had worked when she was single
but now, she cannot work baceuse she has to take care of her son. In a regular
day, she gets her children up and clothe them neatly, she stresses neat, make
them have breakfast then she drops her healthy children to school and sends of
her other son to school and gets busy with household chores prepares food and
children come back home then her husband comes home. She says, “Then we spend
time like a normal family”. Her dream for his son is his starting to speak more
frequently because she says, “There are sudden deaths and I want him to live
good.”

Naime
was my third interviewee. She has born in 1951 in ?stanbul and she is 67 years
old. She has a bachelor’s degree and in my opinion, she has a very brilliant
history of education including international experiences that she is proud of.
She has only 1 child who is 32 years old, since she gave birth a little late.
She has also found out her son’s being with down syndrome after birth, when he
was 1 years old by chance when they went to hospital for measles vaccine. She
says that some children with down syndrome has physical characteristics, but my
son did not have any. She has a different story, she says “One of my foreign
friends told me that in their country they make some tests to women who are
pregnant at late age. I say I am well educated but I did not have any idea
about down syndrome, for example. We were going to the best doctors, the best
hospitals but my doctor who has been chairman for lots of times said that there
is not anything like that and showing ultrasound results told us that our worry
is meaningless” She has worked until his son’s first age then when they found
out, she quitted. She says that she was a social person before, then she
isolated herself from the society with the trauma. She is still with her
child’s father. In a regular day she gets up early and then wakes her son up,
she says it says half an hour to make him get outside the bed because he loves
sleep so much. Then in a big hurry I clothe him even though he knows how to
dress or bath. After breakfast he goes to school, “we sit at home like birds”
she says that they spend time while waiting him to come home. Sometimes doing
their duties, sometimes meeting friends, sometimes housework. They miss him
within day, when he comes back they eat fruits he looks at magazines and
listens to music. Then dinner and tea after dinner while watching comedy TV
shows. Her wish is to keep living like that but she knows that it is impossible.
“God bless, we will go like this as we can go”, she says.

Aysun
was my fourth and last interviewee. She has born in 1970 in Tokat but she had
to change her birth date to 1966 to get married in 1983, she is biologically
47, legally 51 years old. She has not gone to school ever, but she has learnt
how to read and write with her son. She has 2 children and one of them is with
down syndrome. She calls herself “mother of a disabled”, her “disabled” son is
29 years old. She is married for 34 years. Both she and her husband are
retired, and she defines their financial situation as “middle-class”. They have
learned that he is with down syndrome when he was 4. She also has a different
story actually here. She was living with her mother-in-law in village and her
husband was working in ?stanbul. She says, “my son got sick frequently, but you
cannot take him to hospital by yourself at that time, you need permission.” At
last one day, when he was 1, she took her son to the hospital with her
father-in-law and sister-in-law. There, doctor said that he is a child with
down syndrome to the father-in-law privately, but he did not tell anyone until
recently. When her son kept getting sick and she saw their neighbor’s son at
the same age, she persisted her husband to “take them beside” and then they
have moved to ?stanbul and took their child to ÇAPA whom they heard even in the
village. Then, they have learned that their son is with down syndrome. He has
thyroid issues. In a regular day, Aysun gives her son his pills for thyroid
then he gets up, dresses, was his face, tidies his bed while she prepares the
breakfast then they have breakfast and then he opens his computer and watches
movies, he has a certain amount of time. When that time ends, he starts playing
with his puzzle, he never loafs around, she says. At that time, she does
housework, and finally at evening her husband comes back to home and they sit
together and drink tea. She says that “My wish for future, may he not suffer my
loss. I dream I wake up one morning and see my son ‘turned into’ normal.

2.   
Meaning and Practices of Motherhood

 

3.   
Attachments

Conclusion

Bibliography