Mothers, Down Syndrome and Personhood: An Ethnographic Study Set in Cape Town

Muneebah Dawson

DWSMUN001

AXL4401F

Supervisor: Kathleen McDougall

Synopsis

Although policies of the South African Basic Human Rights include people with disabilities, personhood is not

necessarily ascribed to the foetus as the foetuses in South Africa have no rights. Even though the law protects

people with disabilities including inclusion policies, in reality people with disabilities are not always welcomed in

mainstream society. Mothers may legally terminate their pregnancy up to the second trimester which is about 20

weeks on demand or for socio-economic reasons as well as if the foetus they carry is diagnosed as having Down

syndrome (DS) (Pickles, 2012). Such decisions may be made with very limited and biased information. For

instance, mothers may not be aware of the huge potential children with DS have for cognitive and social

development based on nutrition and education. Despite this negative context, many mothers make a decision to

carry foetuses diagnosed with DS to term, based on their beliefs in the inherent personhood of the foetus. Through

ethnographic enquiry based in Cape Town, this study will investigate the experiences of some mothers of babies

with DS, with a special focus on the mothers’ ideas about personhood both before and after the birth of their

children. The study seeks to provide information about what resources mothers had at their disposal in making the

decision.

Background Problem Statement

I was recently told a story by a mother of how doctors re-assured her, my participant, that she was carrying a

healthy foetus and no detection of DS was made; but the doctors were wrong as she gave birth to a baby with DS.

She and her husband suspected something was not right as they were unable to see their child for hours after giving

birth. Later that night the doctors confirmed that their daughter had DS and that more tests were going to be done

on their baby to confirm it. My participant confirmed that all she could do was cry. She was extremely angry at

the doctors for missing this crucial element of their baby’s health during pre-natal testing. Amniocentesis was not

even offered to her as all other tests were negative. My participant had no idea what it meant to have a baby with

DS and she expressed confusion and anger, however admitted that she was relieved that she was not put in the

position of having to decide whether to terminate her pregnancy or not even though she had expressed that

abortion would not be an option as religion played a big role in their family’s life. My participant asserted that

should they have known about the foetus with DS at an early stage they would have at least been better prepared.

Although their social circle was very supportive, they had received no support from any institution except

receiving a visit from a couple with a child with DS who were from the Down Syndrome Association to explain

what DS is and to share their experience. My participant researched DS independently. As per my participant, she

was carrying a little human being inside of her and the reason she would never have aborted is because she saw

her foetus as a person who is alive inside of her womb. Her body language during the interview suggested that it

was emotional speaking about her experience and expressed that her baby girl with DS positively changed their life

I am aware myself from my own family as well as from my experience as a facilitator that the personhood of

someone with DS can be regarded in multiple ways in multiple contexts. My own cousin with DS was so loved

within the family, but was hidden away from the world. And I am aware from my reading on nutrition and

cognitive development that it is possible for good nutrition and occupational therapy interventions to make a huge

difference to how children with DS develop. It is in this context that the proposed legislative change regarding the

legal personhood of a foetus seems both important and also not entirely adequate to what is so difficult to pin down

Even though South Africa is known to have the most progressive Basic Human Rights and equality policies,

including protecting people with disabilities and including reproductive rights; in reality these policies are not

followed through. At the very least, equality requires that no difference should be the foundation for any

discriminations such as; exclusion, marginalisation or stigma. Currently, common law only ascribes legal

subjectivity from birth. This means that children’s rights start once they are living independently from the mother,

outside the womb. Constitutional rights are not vested in the foetuses. This still makes it difficult for the foetuses

to be ascribed agency and personhood. According to the1997 South African Integrated National Disability Strategy

White Paper, studies were conducted and therefore demonstrated the realities that, majority of people living in

South Africa with a disability have not been included in mainstream societies. Due to this exclusion, people with

disabilities have had limited access to basic social, political and economic rights. In a South African context, this

makes for a challenging situation as there is still a prevalence of discrimination as mentioned, including class, race

and gender discrimination. It is in this context that mothers diagnosed as carrying foetuses with DS must make a

decision by 20 weeks as to whether to terminate the pregnancy, “for socio-economic reasons” (Pickles, 2012: 406).

Although the foetus have no rights, according to Pickles (2010 and 2012), South Africa is moving towards a

proposed change in legislation which is to ascribe foetal personhood by including foetal rights under reproductive

rights however; in accordance with the rights of the mother.

My study will investigate that moment of mothers’ decision-making, through the experiences of moms choosing

to have babies diagnosed prenatally with Down syndrome. My initial reading suggests that to investigate this is to

investigate what we consider it is to be a person.

Context

According to the Down Syndrome Association outreach coordinator mothers who are carrying a foetus with DS

are being advised to abort as doctors are still describing DS in a negative light.

According to Rapp (1999), doctors advise patients to abort and describe the foetus with DS as being disabled and

assuming the future to be one of life long, total dependence on the mother with limited cognitive development and

limited life span rendering the child with DS as a burden rather than ‘special’. Personhood is therefore ascribed in

a negative light by medical practitioners.

The ways in which the personhood of foetuses has been understood have become particularly complex since the

advances made by reproductive technologies such as amniocentesis; foetal organ transplants; in vitro fertilization

and ultra sound scans (Franklin, 1991; Rapp, 1999; Pickles, 2010 & 2012; Wright. 2011; Ruel et al, 2013). It

serves to mention that, the production of reproductive technologies is, like all science, not always accurate. Indeed,

the sometimes ad hoc nature of the ‘objective’ diagnosis of DS and the context within which the diagnosis is made

calls for pertinent questions about the nature of the production of scientific/biomedical knowledge, and its claim to

absolute objectivity and fact. The social environment’s role in meaning-making in a DS pregnancy should not be

underestimated. The initial struggle of pain and acceptance in that a child with DS will never live a life in

accordance to how ‘normal’ lives are described by biomedical science and the stigma’s attached to DS such as

mongolism and mentally handicapped and although these struggles are real the evidence of the lives of those with

DS and kinship relationships develops positively is evident (Rapp, 1999 & 2007; Wright, 2010).

The term ‘Down Syndrome’ is a very recent way of categorising and knowing people with particular

characteristics. Down syndrome came to be defined scientifically as such only in the late 19th century. Down

syndrome was first described and named after a British physician in 1866; Dr. John Langdon Haydon Down who

was interested in mental retardation. Thus, Down syndrome inherited its name from Dr Down, not as a description

of ‘down-ness’. It was however not until 1959 that it was discovered that the cause of Down syndrome is due to an

extra chromosome 21. This means that human beings normally have 46 chromosomes however a child with DS has

47 which cause various health conditions such as including autism spectrum disorders, problems with hormones

and glands, hearing loss, vision problems, and heart abnormalities as well as distinct features such as decreased or

poor muscle tone, short neck, with excess skin at the back of the neck, flattened facial profile and nose, small head,

ears, and mouth with protruding tongue, upward slanting eyes, often with a skin fold that comes out from the

upper eyelid and covers the inner corner of the eye, white spots on the coloured part of the eye (called Brushfield sp

ots), wide, short hands with short fingers, a single, deep, crease across the palm of the hand and a deep groove

between the first and second toes. Although DS affects people in different ways and have various symptoms, no

one person will necessarily be affected by all of them. This is true of disability in general: disability analysts and

activists point out that a person’s experience of their disability can be intensified by a lack of facilities or

resources (so, for instance, someone in a wheelchair feels more disabled when there is no wheelchair access to a

building than they would if there were access)(McDougall et al, 2006). However, it is perhaps particularly true of

Down syndrome. For instance, without some sort of speech therapy, children with DS will have limited or no

speech and without physiotherapy from infancy stage mobility will be limited, causing a person with DS to feel

disabled.

As is clear from the above, Down syndrome is a condition that must be understood in terms of personhood. The

decision to carry a foetus diagnosed with DS; depend on legal definitions of personhood as well as on medical

understandings of personhood and the mother’s own understandings. DS is also a condition that is experienced in

very individual ways by different people. Just as DS is experienced in highly individual ways, mothers’

perceptions of their child’s DS, is shaped by a complex mix of technologies, medical knowledge, and social

beliefs and so on.

In the broadest terms, personhood is described as the state of being a person. This state has in Western philosophy

been understood as one related to being rational and individual. For instance sixth-century philosopher Boethius,

who equated a person with “an individual substance of a rational nature” (Singer, 1994 as cited in Farah & Heberle

in, 2007:37). The implications of associating personhood with rationality and individuality are far-reaching. This

suggests that every human being who is unable to rationalise such as people with mental disabilities or people

who is in a ‘vegetable’ state are not persons. This definition is problematic. In a South African legal context,

personhood is described as being static and a person with legal rights (Pickles, 2010 & 2012). Farah and Heberlein

(2007) cites various definitions of personhood in relation to characterising a person in the description of the

person

being, ‘normal’ and its full awareness of themselves however I find some of the definitions problematic. None of

the definitions describe a person with a ‘disability’ such as DS or someone that is deaf or someone born with no

arms. Does this assume people with disabilities such as the child with DS as non-person? What constitutes as a

person or a non-person?

Personhood can be described in many ways. In the cases of people with DS, personhood gets described

differently: there is the personhood of ‘the physical features such as the protruding tongue, similar shape face,

squint eyes, weight and height’ (Wright, 2010 & Rapp, 1999 & 2007). There is the personhood of ‘disabilities’: so,

for example the extra chromosome 21, and the slow cognitive development of the person with DS are understood

to define what makes someone the person they are. Then there is the personhood of affect. People with DS are

often understood at being very loving and very lovable – more so than so-called ‘normal’ people (Hamlition & Sag

miller, 2013). This aspect of personhood is best understood in relation to its opposite, as described in Silverman’s

(2012) book Understanding Autism. Here Silverman shows how autism is understood as a disorder of love:

sometimes mothers have been blamed for causing autism through not loving enough, but more commonly, autistic

children are seen as difficult to love and as having difficulty in expressing love (whether true or false). Silverman

describes the constellation of personhood in affect; social emotions. Dumit (2004) also describes personhood as

understood today in terms of appropriate and inappropriate affect. In the ethnography Picturing Personhood, Dumit

describes how scientists try to create pictures of emotional states (like depression) in the brain through brain scans. Positron

emission tomography (PET) gives three different descriptions of three kinds of humans that correspond to the 3

kinds of brain-types; schizophrenics, depressed and normal (Dumit, 2004: 6). Dumit (2010:8) critics this however

and describes the PET scan as having “powerful semiotics of what counts as normal… normal does not

necessarily mean healthy [or without illness, even someone who do not have a named illness such as someone

with cancer or DS has experienced a cold or the flu or chicken pox therefore no one is free of illness]”. Personhood

located in the brain takes a look at how people are being framed as a disease; the sick self and the healthy self. Dum

it (2010:8) cites Canguilheim (1978) in saying that normal has been derived by “…an average population, as a

typical member, as an ideal type”. In the case of children with DS, the foetus with DS is ascribed ‘abnormality’

and ‘ill health’. What is ‘normal’, ‘healthy’ and ‘unhealthy’? As Dumit puts it “…normality can be a variety of

things” (2010:8)

In how mothers think about the personhood of the foetus there is much of the complexity described above. For

instance, the personhood ascribed by the mother before finding out about DS and after, may change, and so too the

personhood ascribed by the mother after she saw her first scan may change (Mitchell, 2001). There is also the

personhood of the social; personhood is ascribed by the broader social environment, outside the mother-child/

foetus with DS dyad, to the foetus or child with DS; kinship. Sahlins (2013) defines kinship as the ‘mutuality of

being’ in that kinship is not necessarily blood relations, as it is the relationships between people, bodies, and

emotions. Sahlins (2013) demonstrates that mutuality of being is the symbol of the relationships between people

that gives one a sense of belonging and is therefore not necessarily a biological connection of ‘blood ties’. Kinship

does not only start after birth as some cultures develop kinship with the foetus through sexual relations and

procreation so that the notions of birth prove meaningful and that there is a high dependency on kinship rather

than kinship depending on birth. In the case of DS, this means that in some cultures the relation with reproduction

and the foetus is dependent on relations with the social thereby ascribing personhood differently. Personhood and

kinship is thus cultural and socially constructed.

Research Question

What do mothers of a foetus or child with Down syndrome understand about personhood and health that

influenced their decision to carry their prenatally diagnosed child with Down syndrome to term? Teasing out this

broader question a bit more, at what point did mothers’ consider their foetuses as persons. Was this only after

birth or before? Was it a stable category? Personhood as previously mentioned is not static and personhood can be

ascribed in multiples of ways therefore proving not to be stable. The various types of personhood ascribed by the

mother can be affected and influenced by

biomedical science, religious beliefs, kinship ties and social stigmas causing personhood to be in a constant flux.

What resources did mothers have access to that influenced their decision? This last question responds to the

suggestion in the reading that multiple factors influence mothers’ understanding of personhood as well as their

beliefs about the foetus. I am interested to find out what the social contact between the maternal mother, her

family and broader environment is towards the foetus with Down syndrome. Further, what education on DS and

reproductive technologies are readily available to pregnant mothers carrying a foetus diagnosed with Down

syndrome? In contemporary periods reproductive technologies have advanced immensely. This gives doctors a

chance to be able to see signs of abnormalities, and parents the chance to be able to see real-time images of their

foetus. This in turn allow for particular processes of creating and allowing kinship, forming‘ normative’ social

bonds and processes of ascribing personhood to the foetus. Access to reproductive technologies and information

could result in ascribing personhood due to real-time foetal imagery which could positively impact the future of the

child with DS through an improved kinship relations with the mother as she views real time images of her ‘baby’

creating an awareness of her living foetus. The way in which ultrasound scanning and the information it produces

is managed by the doctor affects how the mother perceives the personhood of the foetus. This could perhaps hint

at a new line of enquiries into the ethical practice of medical doctors. As the movie Dakota’s Pride – A New

Parents Search for Positive News and Hope on Down syndrome show that biomedical science and the state

continuously paint a negative future for families and children with DS (Hamlition & Sagmiller, 2013). The whole

process of pre-natal testing as a diagnostic tool for DS is thus inseparable from the confusion and chaos it creates

in the lived realities of the lives of those affected. As such, I wish to pose another question; will the understanding

of personhood and its associated diagnosis of DS prove different to the mother-foetus/ child dyad should a more

positive interpretation of the future of the child with DS be given by medical science/ doctors? It is a known fact

that given the chance, there are children with DS that can drive cars; that are employed as actors, motivational

speakers and that even marry, living ‘normal’ lives (Hamlition & Sagmiller, 2013). Why is it then, that objective

biomedical science and technological fact, in the context of giving incorrect diagnosis of DS as in my interview as

mentioned above, is not questioned?

Research Methods

In terms of my own research I found Rapp’s (1999) and Franklin’s (1991) ethnographic accounts of the social

history of the lives of the maternal mothers of the DS foetus and how the maternal mothers and families feel about

this pregnancy in their literature most influential, and appropriate to my research topic on DS. My intention is to

model Rapp’s (1999 & 2007) and Franklin’s (1991) ethnographic approach to the ‘social life of things’. Rapp demo

nstrates how class, race, religion, sexuality, age, language and ethnicity differently alter biomedical scientific

genetic knowledge into social and cultural knowledge [in understanding the different ways personhood can be

ascribed]. What I draw from Franklin is the necessity to consider every living part and its biological make up, in

understanding the ontology of the foetus as evidence in the construction of personhood.

I will draw on Moll’s (2002) theory of science and culture to reframe such issues as the disability-illness

distinction, subject-object relations, boundaries, difference, situatedness, and foetal ontology; not specific to DS

though. Moll complicates the notion of a single diagnoses and ‘the body as a whole’ as her narratives convinces

one that there is no single whole living body by referring to popular knowledge. In the same sense Moll’s

argument eradicates the ‘know how’ of what goes on in a single body, complicating the knowledge of such

populations and how these “problems are framed, bodies are shaped, and lives are pushed and pulled into one

shape or another” (2002: 184). She leads me to ask ‘what is the truth in medical diagnosis anyway?’ I am greatly

influenced by Moll’s (2002) subjective writing style as it is critical to ethnography to demonstrating one’s own

voice.

Setting and Interlocutors

The study will be located in Cape Town, where the DS Association is located. There will not be a fixed setting,

such as an institutional space. Instead I propose meeting with mothers at their homes, where I can also observe

their interactions with their children. Given the time constraints for this

project and my need to allow enough time to win enough trust from my interlocutors to speak about quite sensitive

matters, I anticipate engaging with not more than 4 mothers. My participants reside in the following areas

respectively:

Gordons Bay, an area known to attract tourists, set alongside the mountains where the Steenbras dam is located;

here the mother who is from a ‘white’ family who is married and from a privileged background with easy access

to resources who is not only dealing with her child having DS but at the same time her child has been diagnosed

with Leukaemia.

Blue Downs and Delft, both suburbs part of the Oosterberg sub-region of the city and is located on the Cape Flats.

One mother is a ‘colored’ Muslim woman, married, from a middle class family and the other is ‘black’ single

woman, from a more underprivileged background with limited access to resources.

My preliminary attempts at negotiating participation from moms have been with the help of the Down syndrome

Association’s (DSSA). In achieving this I have gained access to my research participants through the DSSA

outreach co-ordinator. In accordance to DSSA policies, my initial point of access to my research participants as I

am obliged to do is to meet with my participants at a group discussion regarding the intention of my research. This

discussion will take place on the premises of DSSA in Bellville.

Interviews

Semi-structured interviewing would be my primary methodological tool notwithstanding the observed interaction a

dditional to interviewing. I plan on spending a minimum of 3 days with each participant. To accurately compare

what my participants are saying and feeling about decision-making compared to what they have been doing about

what they are saying they have decided, I will conduct interviews with my 4 participants. The aim of the interview

is my attempt to look at the relation between the social and, how and if government assists in anyway with

educating women who has a foetus or child with DS on pre-natal care. Furthermore, I would like to know how my

participants understand Down syndrome and personhood.

Participant observation

In order for my participants to feel comfortable with my presence I will feel content in creating rapport by merely

chatting casually. I will demonstrate my helpfulness and professional competence in offering to assist with daily

social activities to alleviate the mothers’ workload. I will offer to assist with daily tasks and activities as well as

interacting with their babies with DS - anything to get the space familiar with my presence. I intend to offer a free

service to night nurse for them during my research as part of my observation whilst providing the family with some

relief and hope that my expertise in this regard will help me gain trust and confidence in building friendship. In

return I hope to acquire valuable subjective data in relation to ethnographic accounts of my participants lived

realities compared to the bio-medically presumed life of the mother and, the child with DS.

Policy Review

I also have intentions of interviewing a woman from the South African Down syndrome association who has a son

with DS about public policies on DS which will include any type of support from government or/ and medical

institutions. I intend to independently search for documentation on policies around DS if there are and more so to

follow up on any progress with foetal rights policies in South Africa.

Ethical Considerations

I will be using the ethical guidelines and principles of conduct for Anthropologists for my initial ethical

considerations (Anthropology Southern Africa, 2005).

I. Protecting research participants from harm

Given the nature of my study, my participants; the mothers of the children with DS might bring up sensitive

information; they might have considered for a while aborting, and/or they may sometimes regret their decision not

to abort. They may have bad feelings about this. Given that the study is limited to only 4 people, they may be

recognisable to members of their social circle and to the DSSA people. It may be difficult therefore to disassociate

negative information from personal identifiers for informed readers.

I. Confidentiality

After giving it much thought, I have decided to deal with the above problem in three ways: through keeping open

the conversation about informed consent, through offering interlocutors the opportunity to work with me or to

revise that part of my work. This will allow me to give as much as I can, legitimate accounts of my own deep

rooted morals and ethical considerations about how to represent the truths I perceive in the field.

I. Informed consent

Although consent and the way in which consent is received is contestable and indeed contested, I will seek full

informed consent as well as written consent forms for all of my participants and any unplanned people I interact

with, during the course of my research. By signing a consent form this gives me, the researcher and my

participants’ confidence that the reason for my research is understood and that they agree to participate in it in

order to add valuable information in the creation of knowledge and understanding the realities surrounding DS. I

will explain my research thoroughly for the purpose of creating a good understanding of my research. I will also

take into consideration those who do not feel comfortable signing a document and instead verbally agree on the

way forward. I will regularly inform participants of their right to withdraw consent and refrain from further

participation should a participant become uncomfortable as this is a sensitive topic, keeping open the conversation

about informed consent and as I mentioned before allowing my participants to go on and off the record.

I. Vulnerable persons/groups

My research involves women who might be considered vulnerable. I will be mindful of their needs as well

refraining from intruding. Where vulnerability is demonstrated I will withhold any such information from

publication. I will ask permission to use the information they provide and whether or not my participants will

prefer me using pseudonyms or anonymity in my research study from the onset of my interaction with them in

applying the pseudo name in my notes as well. I will explain this from the onset of my research as part of

introducing my research to the mothers. I have further more drawn up a list of various crisis helpline contact

details as gesture of good faith in any event the need arises for any of my participants for any reason should they

feel the need to speak to someone professional.

I. Information dissemination, intellectual property and returns from research

It is my responsibility to ensure that I make my data available to my research participants. I will edit or make note

of any discrepancies after making sure they understand my data. I will so far as I can give any feedback from my

research back to the participants involved. As previously mentioned I will so far as I can collaborate with my

participants in finalising my research paper as well as provide each participant copies of my notes of the data I

compiled specific to each participant and final research thesis for their perusal.

I intend on being transparent with all of my data and intentions.

Wider significance and dissemination

The literature I have thus far reviewed has covered a range of areas around DS and how ‘meaning making’

through biomedical technology is formed. Rapp (1999 & 2007) and Franklin (1991) has dedicated their research

on the ethnographic accounts of women with a foetus/ or child with DS. The reason for my research is to draw in

on established knowledge of ‘personhood’ using Dumit’s (2004)

framework on ‘personhood’ and Rapp’s (1999 & 2007) framework on reproductive/ pre-natal technologies to shed

light on these contributions of understanding ‘personhood’ and showing the social significance technologies have

on ‘meaning making’ of the mother-foetus/ child with DS dyad. Furthermore, it aims at showing how the

availability of resources contributes to ascribing foetal ‘personhood’ to the foetus/ child with DS. This

contributing factor will hopefully have a positive and happy influence in the social environment surrounding the

foetus/ child with DS which will allow mothers and the broader public to better understand the needs of the child

with DS in the hope to enhancing the life and future of the child with DS.

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