Mothers of Children with Down Syndrome: Meanings & Practices of MotherhoodEgeYAYLI AbstractYAZILACAKIntroductionInthis paper, I’d like to analyze practices of motherhood performed by women whohave children with down syndrome comparing one and other. I chose this subjectbecause for a big part of my life, I have dreamed of being a mother, but I havebeen doubtful about giving a birth to a disabled child both for myself and forhim/her.
I think, I have overthought this subject and I have decided that if Iwill have a chance to predict that I will have a disabled child, probably Iwill have an abortion. However, it is not that easy for me to decide and go onbecause there are women out there who have children with down syndrome and theyput themselves apart from other mothers. Some women had a chance to decide ifshe wanted a child with down syndrome and some did not. No matter what, all ofthem experience daily differences from other mothers that made me afraid.
Istarted my paper with literature review of relevant topics and then explained methodologyI used. As I finished these introductive parts, empiric findings will bediscussed regarding literature reviews in an order of women’s backgrounds,their way of explaining motherhood and differentiating their motherhoods, andfinally their attachments to their group of motherhood. At the end, conclusionpart and bibliography took part. Literature Review I find it crucial to define down syndrometo 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 ofdown syndrome are low muscle tone, short height, and a single deep crease atthe center of the palm. However, not every person with down syndrome shouldhave these characteristics at the same degree. Approximately, 1 baby in 700 hasdown syndrome however as mother’s age increases the probability of downsyndrome increases as well. The cause of the extra chromosome which causes downsyndrome is still unknown and the additional copy of the 21 can come fromeither 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 needto know these thoroughly. Both of them are genetic conditions which means theyrelate to the genes, but only 1% of all cases of down syndrome are hereditarywhich means passing from parent to child and this heredity occurs in”translocation” type of down syndrome. And lastly on down syndrome, it is acondition or a syndrome, not a disease.
Monica Cuskelly, Penny Hauser-Cram and Marcia Van Riper havewritten an article called “Families of children with Down syndrome: What weknow and what we need to know” and in their research on family functioning theyhave realized that majority of this research is conducted with mothers. Becausestill mothers of children with down syndrome take the primary role in childcaring, says Rebecca Stores et al. However, Hedov and colleagues found thatfathers of a child with down syndrome take a greater share of the child carethan the fathers of typical children.With the rising discussions on abortion, importance ofreasons laid about abortion has increased as well. All politicians from variousparties represent various ideologies have different and contradictory, even inthe same party, points of views on abortion. These claims include agitation ondisadvantaged situations, arguments about freedom, religious bases, moral ideasand so on. While this discussion goes on the government level, the society islooking for rational explanations for decisions made and the position thatgovernment takes. For example, in Havva Çaha’s article called “SelectiveAbortion: The New Face of Eugenics”, she represents the one side of thesociety.
She quotes on Sharp and Earle’s research as that in 1960’s abortionwas only made as a medical process under mandatory conditions, in 1970s it hasbecome a contraceptive and with theimprovements in prenatal screening tests, in 1990’s it has started to be a way to get rid of disabledchildren. According to Çorbac?o?lu and Yüksel, all over the world, in 56countries it is legal to have a voluntary abortion until the 12ndweek of the pregnancy. However, in the case of disability or diseases of the fetusor a threat to the mother’s health, it is extended up to second half of thepregnancy. Çaha argues, belief in modern medicine’s objectivity and doctors’ability to decide the best, increases the effect of the doctors and decreasesthe mother’s and family’s, on the decision whether have an abortion or not. Theidea of the prenatal screeningtests bring about freedom towomen, and current ideas on aesthetics, and body in the social field drivewomen to get rid of disabled babies and give support to eugenics.
According toFaden et al. mentioned in Çaha’s article again, some doctors oppose givingbirth to mental deficiency. Also, the reason lays behind women’s havingabortion in first 3 days after they have learned that they will have a disabledbaby, is doctors’ asserting that the delay by each dayincreases risks of an abortion.This leads to decisions made rapidly, says Masden. All of these supportcounter-abortion ideas historically and make some psychological assumptions asreasons of abortion. I think, Çaha has a narrow and incomprehensive point ofview, however she represents the society in a way.
There is an NGO called “TheFood 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 StephenWilkinson’s article called “Prenatal Screening, Reproductive Choice, And PublicHealth”, he has a more comprehensive angle but narrower subject which isprenatal screening and its aim. First, he starts defining two views, Pure Choiceview and Public Health Pluralism view. Former claims that there is only asingle aim which is providing choice when latter claims improving populationhealth, improving maternal and fetal health, reducing future health and socialwelfare costs and respecting autonomy, in practicable conditions requiringvalid consent and in appropriate conditions providing choice are the aims ofprenatal screening. For me the very interesting part ofthis comparison was saying, especially Public Health approach is vulnerable tothe criticism because of the concern aboutprenatal screening and abortion to select out disability.
However, he says thatthere is not much difference in these views regarding negative attitudes todisability, because prenatal screening system either aims to reduce theprevalence of disability or to provide choice will end up in abortion. Withwhatever concern, if given a choice it is known that most people will choose toavoid disability. He strengthens is theory with an example from UK on downsyndrome, saying that it has been reported that 90% of down syndrome diagnosesend in abortion.
He argues that, unless the value given to women is changed, itwould be same with the same in potential sex testing in early pregnancyscenario because the society is sexist, and it is about the message sent. Hehandles this subject as a matter of society, not the government actually andpresents the concern that gathers all of these articles’ relevance to mysubject: “One of the main concerns about using prenatal screening and abortionto ‘select out’ disability is that it is allegedly eugenic and sends out anunacceptably negative message to and about people with disabilities.” Hecontinues with Tom Shakespeare’s words claiming that prenatal diagnosis may beseen as a discrimination against disabled people, because it has a message ofthat it would be better if they were not born too. It definitely suggestsnegative views towards disabled people.
In my opinion, Shakespeare says thatthese discussions are not about just born-to-be children but also affectexisting disabled people’s lives and their environments and according to me,these are the most vital factors in their lives. As ClaudiaMalacrida defines in her article called “Bodily Practices as Vehicles for Dehumanizationin an Institution for Mental Defectives”, dehumanization is a process ofattributing less human or non-human features to members of a group. For me,”members of a group” must be underlined because it creates artificial stratasby differentiating.
This attribution permits normally not acceptable treatmentstowards dehumanized individuals. Until this time, I tried to explain someapproaches that objectifies disabled people, including people with downsyndrome, as they do not have any autonomy and even as they do not or shouldnot exist at all.My starting point of this research paper was my assumptionthat not theories in themselves but objectifying and dehumanizing approaches,in brief their environments’ approaches including father of the child, towards theirchildren with down syndrome affects their mothers’ understandings of theirmotherhoods, their practices and their attachments to other mothers. Method I have used narrative analysis byconducting interviews to fully understand the way women’s creating their ownmeanings about motherhood. I have conducted face-to-face and recordedinterviews with 4 women who have children with down syndrome. The averageduration of the interviews was around 40 minutes, which is way below from whatI expected. All of the interviews occurred at the association which I succeededto get in touch and helped me to find my interviewees. Due to the limited timeand inability to leave the city in that time period, no matter how much Iwanted, I was not able to interview mothers from different cities, even thoughI aimed to find my interviewees from different associations, only one of themwas eager to meet my need.
All interviews were conducted based on the principleof confidentiality and all interviewees signed a consent form which I preparedand informs interviewees about recording and expects voluntariness especially.Since, I do not want to reveal my interviewees’ names, I will use pseudonymsthat I assigned each of them popular names when they have born. I had difficulties in leading thewomen to deepen their narratives, my aim was to ask less questions and mostlylisten what they narrate.
However, I could not think that they do not have muchto say since they have got used to their lives. I guess, questions that I haveprepared were not enough to lead them to depth. Regarding this issue, I shouldhave give myself more time to rearrange my questions after every interview butunfortunately, 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 hademotional intensity, however it did not last long and not caused any distancebetween us. 1. Get to Know Mothers: Their BackgroundsTülaywas my first interviewee.
She has born in 1962 in Tunceli and she is 55 yearsold. She is primary school graduate and barely knows how to read and write. Shehas 5 children, one of them is with down syndrome and she calls her son withdown 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 shehas talked with a doctor and the doctor has persuaded her to look after herchild saying no one will look after him except you.
Also, her child has seriousdiseases about thyroids called toxic goiter which causes anger and he has touse sedatives. She is a divorced mother for 5 years, and their financialsituation is not well. She defines herself “poor” (“dü?kün”). Her mother andfather have passed away about 10 years ago. She has not worked ever. In a regularday, 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 shetidies up and prepare food for her grandson and son, and finally he comes backfrom the school. Arifewas my second interviewee. She has born in 1974 in ?stanbul and she is 43 yearsold. She is secondary school dropout. She has 3 children and the eldest is withdown 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 marriedwhen she was 23.
They have learned their son’s being with down syndrome afterbirth when he got sick in his first 40 days and she says that when they heardit, “it was like world falling apart, while I was expecting healthy child.” Shementions her son as “handsome, not like children with down syndrome” andcontinues “Doctors said maybe it has not affected his intelligence, but it didnot happen as such.” He does not have any diseases.
Arife’s family’s financialsituation is well and she says we are fine. She had worked when she was singlebut now, she cannot work baceuse she has to take care of her son. In a regularday, she gets her children up and clothe them neatly, she stresses neat, makethem have breakfast then she drops her healthy children to school and sends ofher other son to school and gets busy with household chores prepares food andchildren come back home then her husband comes home. She says, “Then we spendtime like a normal family”. Her dream for his son is his starting to speak morefrequently because she says, “There are sudden deaths and I want him to livegood.”Naimewas my third interviewee.
She has born in 1951 in ?stanbul and she is 67 yearsold. She has a bachelor’s degree and in my opinion, she has a very brillianthistory 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 hewas 1 years old by chance when they went to hospital for measles vaccine. Shesays that some children with down syndrome has physical characteristics, but myson did not have any. She has a different story, she says “One of my foreignfriends told me that in their country they make some tests to women who arepregnant at late age.
I say I am well educated but I did not have any ideaabout down syndrome, for example. We were going to the best doctors, the besthospitals but my doctor who has been chairman for lots of times said that thereis not anything like that and showing ultrasound results told us that our worryis meaningless” She has worked until his son’s first age then when they foundout, she quitted. She says that she was a social person before, then sheisolated herself from the society with the trauma. She is still with herchild’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 lovessleep so much. Then in a big hurry I clothe him even though he knows how todress 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 doingtheir duties, sometimes meeting friends, sometimes housework. They miss himwithin day, when he comes back they eat fruits he looks at magazines andlistens to music. Then dinner and tea after dinner while watching comedy TVshows. 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.
Aysunwas my fourth and last interviewee. She has born in 1970 in Tokat but she hadto change her birth date to 1966 to get married in 1983, she is biologically47, legally 51 years old. She has not gone to school ever, but she has learnthow to read and write with her son. She has 2 children and one of them is withdown syndrome. She calls herself “mother of a disabled”, her “disabled” son is29 years old. She is married for 34 years.
Both she and her husband areretired, and she defines their financial situation as “middle-class”. They havelearned that he is with down syndrome when he was 4. She also has a differentstory actually here. She was living with her mother-in-law in village and herhusband was working in ?stanbul.
She says, “my son got sick frequently, but youcannot take him to hospital by yourself at that time, you need permission.” Atlast one day, when he was 1, she took her son to the hospital with herfather-in-law and sister-in-law. There, doctor said that he is a child withdown syndrome to the father-in-law privately, but he did not tell anyone untilrecently. When her son kept getting sick and she saw their neighbor’s son atthe same age, she persisted her husband to “take them beside” and then theyhave moved to ?stanbul and took their child to ÇAPA whom they heard even in thevillage. Then, they have learned that their son is with down syndrome. He hasthyroid issues. In a regular day, Aysun gives her son his pills for thyroidthen he gets up, dresses, was his face, tidies his bed while she prepares thebreakfast then they have breakfast and then he opens his computer and watchesmovies, he has a certain amount of time. When that time ends, he starts playingwith his puzzle, he never loafs around, she says.
At that time, she doeshousework, and finally at evening her husband comes back to home and they sittogether and drink tea. She says that “My wish for future, may he not suffer myloss. I dream I wake up one morning and see my son ‘turned into’ normal.2. Meaning and Practices of Motherhood 3.