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‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

Posted Sep 06 2011 8:26pm

It is very interesting to see how disability is viewed in various cultures. Beyond academic interest, there is much we can all learn from each other. A recent paper looks at Down Syndrome and prenatal testing in Pakistan. The paper is ‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

To give you an idea of the study, here is the abstract:

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the ‘will of God’ was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more ‘scientific worldview’ of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.

65 people were given cards with a number of questions and asked to sort them into a grid provided:

The method requires participants to consider and respond to a set of statements (the Q-set) using a ranking technique (a Qsort). Responding to the statements allows participants to express their viewpoint on things already written or said about the topic.

Example statements are: “A person with Down Syndrome will always be dependent on others” and “Children with Down Syndrome can achieve a great deal”. How they are sorted is then analyzed.

Some of the participants were removed from analysis. Of those remaining, some were parents and some were professionals:

Five Q-sorts were excluded from the analysis (4 parents, 1 health professional) due to concerns that these individuals had not understood the sorting procedure. The final sample of 60 comprised 26 parents of children with DS (14 mothers and 12 fathers), 28 health professionals/researchers (14 females, 14 males) and 6 female psychologists. The parents of children with DS reported occupations within the following groups: government service, domestic service, tailoring, teaching and ‘business’.

After analysis, the authors grouped the responses into three “accounts” of how Down Syndrome is viewed:

Account 1: a child with DS is ‘the will of God’ and a valued human being
Account 2: a child with DS is ‘the will of god’ but a burden to their family
Account 3: a person with DS is a genetic anomaly in a stigmatizing society

Even though “account 1” is classifies a person with Down Syndrome as “the will of god and a valued human being”:

Almost half of the parents in Account 1 expressed favourable attitudes towards abortion for the condition despite relaying positive experiences with their affected child. In the original UK based study no participant who had a close family member with DS expressed such views (Bryant et al., 2006).

Accounts 1 and 2 are from a mix of parents and professionals. Account 3 is from six professionals (two male doctors, a female doctor, a female psychologist and two women in related professions.)

The authors begin their conclusion with:

The findings of this study support those of previous research, for example, the stigma associated with having a disabled child in a Pakistani community, the co-existence of theological and biomedical explanations for disability, and the rejection of abortion on religious grounds for some, but not all Muslims.

If you will allow me, I will pull a couple of sections from the paper without added comment:

The view expressed by Item 20 (‘To know someone with DS enriches our understanding of what it is to be human’) was endorsed consistently across accounts. Participants’ comments suggested belief in a ‘higher purpose’ for the existence of people with DS; for example, “[It] makes us realize the true worth of being a normal human being” (22: female doctor, Account 1); “It reminds me of the unpredictability that is strongly associated with human life. It teaches the original meaning of what a Man is” (9: female doctor, Account 2); “Because it is something that makes us feel thankful to God” (10: female health professional, Account 3).

and

The origins of the word Islam refer to the act of submitting to the will of God, and a belief in the will of Allah as the determinant of the life-course is commonly held by Muslims (Murata & Chittick, 1994). Most participants in this study, with the exception of some of those exemplifying Account 3, strongly endorsed the item ‘If you have a child with DS it is because God chose you’ although interpretations of the will of God differed by account. Participants in Account 1 believed that Allah ‘sent’ children with DS as a blessing to parents, to be a source of learning and a means to develop a positive acceptance of His will. Participants in Account 2 expressed the view that Allah sent such children as a trial so that parents might learn forbearance and acceptance of God’s will through difficulty and sorrow.

  1. Jon Brock:
    Fascinating stuff. I seem to remember reading somewhere that in some societies, people with Down syndrome were actually considered to *be* gods. Can anyone back me up on that?
  2. sharon:
    @ Jon Ive heard that about Autism, but not DS.
  3. usethebrainsgodgiveyou:
    Christians are very similar. Abortion of "defective fetus's" is common. There is a story I just love:
    "Rabbi, who sinned, this man or his parents, that he was born blind?” 3“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life."
    Life is life...we are all screwed up. And if you don't think you are, you are probably among the most severe. I have often wondered if God (whom I've never met in person) is more like a person with Down's than a wall street banker. After all, the good book says, "God is love".
  4. Leticia Velasquez:
    Jon, I have heard that people with Down syndrome were considered sacred in Orthodox Jewish tradition, and you can find two Renaissance religious paintings where people with Down syndrome are included: as the Christ Child in Andrea Mantegna's Madonna and Child in the Museum of Fine Arts in Boston, and as angels and shepherds in a Flemish Nativity at the Metropolitan Museum of Art in NYC. When I pointed out the Mantegna painting, the Museum of Fine Arts replied negatively, stating that "Christians would never portray Christ less than perfect,so that child does not have Down syndrome. A medical doctor who examined the painting had confirmed that the symptoms of Ds were present. See the article in "The New Atlantis".
  5. Liz Ditz:
    Jon, Uta Frith speculated that the Orthodox Russian tradition of "holy fools" might have included individuals with autism. See for example, essay by Darryl Treffert in WMS: http://www.wisconsinmedicalsociety.org/savant_syndrome/savant_articles/autistic_disorder

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