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WOMEN WITH DISABILITIES: Parenting and Reproduction.

Multiple narratives constitute ideas of motherhood and childhood. These emerge from the diverse experiences of parenting. However, in popular culture, there is a tendency to idealise and naturalise parenting into a one-size-fits-all category, often accompanied by the image of a young, non-disabled woman as a parent. Any attempt to disrupt this idealized notion, and make visible the complexities that accompany both motherhood and childhood, remains a challenge. Women with disabilities have played an important role in disrupting this singular narrative.

Over the past decades, the emergence of LGBT, disability, intersex, and sex workers' rights movements has contributed to the emergence of a counter-narrative that challenges some of the stereotypes associated with parenting, in particular, motherhood. This has been accompanied by the rapid advancement of technologies for assisted reproduction. These technologies have served to profoundly alter the mechanics of reproduction and, in the words of Adria Shwartz, "... shaken the very foundations of our notions of motherhood ... the naturalness of the reproductive process has been dramatically altered ... the associative link between women, fertility and motherhood is being eroded, if not broken, in the laboratory."

According to the 2011 Census of India, of the total population of persons with disabilities (21 million or 2.1% of the total population) close to half report being unmarried. Unsurprisingly, the percentage of women with disabilities that report being unmarried is more than that of men. In India, where the marriage market is segmented by many parameters such as caste, religion, and ethnicity, to name a few that serve as selection or exclusionary criteria, it is not hard to see why disability would constitute an important parameter. An online matrimonial site conducted a survey in 2011 (1) about young people's views on marriage and suitable partners. The survey confirms that ableism continues to be an important parameter in the selection of a marital partner. In the survey, 59% women and 48% men said they will not marry anyone with a physical disability. About 34% women and 37% men said it would depend on the situation and extent of the disability. Only 7% women and 15% men said that they would marry someone with a physical disability.

In India, marriage remains the primary institution through which young people realise their romantic and sexual aspirations. Young people with disabilities are no exception. In response to the need for them to find partners, niche matrimonial sites such as Wanted Umbrella, India's first match-making and matrimonial site for the differently abled, has been launched. A second site that is increasingly accessed by women with disabilities is Inclov. Technology-based solutions such as these have helped to open up spaces for young people with disabilities to meet people, although these spaces are contingent on English language proficiency and access to technology. However, technology does create opportunities to disrupt the "isolation" and "alienation" that young people with disabilities often experience in forging relationships.

Many disabled people's organisations (DPOs), like the Delhi Foundation of Deaf Women have emerged as viable third parties where gatherings are organised with young people with disabilities to meet and explore marriage alliances. In addition, many state governments in India have introduced cash transfer schemes that provide incentives to people who marry a person with a disability. This scheme has had a mixed response from the disability community with some criticising it as further stigmatising those with disabilities. Others believe that the scheme can help empower those with disabilities, particularly women.

Marriage remains the key axis within which most people, including those with disabilities, realise their aspirations with regard to parenting. Women with disabilities face severe limitations in negotiating the right to marry. This has consequences for related decisions on child bearing and parenting.

The other fault line that profoundly impacts on the decision of women with disabilities to reproduce is the domain of laws. A wide spectrum of laws limits the legal capacity, autonomy, and choice of women with disabilities, particularly those with intellectual and pyscho-social disabilities. The decision to reproduce or not is important to analyse through the prism of consent. Carole Vance, a noted U.S. academic, has written extensively on the role of consent as an important part of sexual interactions and notes that though there are complexities with regard to always being able to determine if a person's sexual interaction is consensual, the standard of consent has become widely accepted and enshrined in laws. However, for women with disabilities, consent standards still remain a widely debated issue and many national laws often include a disability exception when guaranteeing women's right to choose.

Two examples from India demonstrate how the standard of consent remains undermined for women with disabilities. In the first case, the Supreme Court of India, some years ago, (2) upheld the right of a girl with intellectual disability to give birth to a child. Some, including many from the disability rights movement, perceived this to be a welcome judgement. However, in reading the fine print of the language of the judgement, others highlighted the fact that the Court's decision was based on an interpretation of the rights of the child and not necessarily the rights of the woman. To quote Shruti Pandey, women's and human rights activist, as cited in an article by Mahabal, "If the [Supreme Court of India] has said this woman wants to go ahead with the pregnancy, in principle I would support the decision. Every woman, including women with mental disabilities, has a right to bear children. But if the court says it is the right of the child to be born/not to be killed, and so the pregnancy must go on, that is hugely problematic." In the same article Mahabal talks about a much-criticised incident in India during the 1990s when hysterectomy was performed on 17 mentally challenged girls below 18 years. The girls were lodged in a mental health institution. In this instance, the state government took a unilateral decision to control the girls' reproductive rights. The professionals involved in doing this did not perceive this as a gross violation of human rights, but rather justified their actions as having been done in the best interests of the girls. When it comes to the reproductive decision-making of women with disabilities it is evident that Courts and the State play an intrusive role; often hidden behind the protectionist discourse is a complete disregard for the right to consent of women with disabilities.

Parenting, and in particular motherhood, is linked to the dominant narrative of being a protector and caregiver. What constitutes the capacity to look after a child is subjective, though laws are often used to define and interpret this in ways that mirror the dominant societal discourse about a parent-child relationship and more importantly, what it takes to be a "good mother."

In the case of women with disabilities the need to address their right to parenting and reproduction needs to be looked at as a continuum and how society and law play a profound role in placing constraints through their life cycle. To elaborate further, decisions about the right to parent for those with disabilities take place in childhood (at the time of puberty) often as part of a series of protectionist measures and can often take the extreme form such as sterilisation and hysterectomy. In its more benign form it manifests in the way families, caregivers, and other institutions "permanently" infantilise women with disabilities and accord no recognition to their evolving sexuality.

This final segment takes us back to where this article began in highlighting the diverse ways technology is altering choices around reproduction. The accelerated pace of technology proliferation as well as its diffusion into the everyday lives of women needs to be understood both in terms of its liberatory potential for women with disabilities as well as the profound dilemmas that they pose. Pre-natal testing is one of the most contested sites where this dilemma manifests. The increasing possibility of being able to screen for various disabilities can result in undue pressure on women with disabilities to undergo prenatal testing during the course of their pregnancies. Judging the quality of the foetus remains strongly embedded within a medical discourse. Even as access to abortion remains restricted and abortion itself stigmatised, access to disability-selective abortions remains normalized and encouraged by providers. The idea that a woman with a disability cannot be a "good mother" and caregiver remains strongly entrenched as a societal norm. Families and caregivers deploy a raft of protectionist measures, from the more benign confinement within the home to the more extreme hysterectomy and sterilization, based on a belief that women with disabilities are incapable of providing consent and pregnancy can only be the result of non-consensual sex, an act of violence. It is worth pointing out that this can vary depending on the type of disability.

In discussing reproduction and parenting for women with disabilities the idea is not to reify their desire to parent. It is important to note that not all women, including women with disabilities, want to reproduce and embrace motherhood. Women's choice to undergo an abortion, be a surrogate, or hand over new-born children for adoption, reflect the complex ways women view reproduction and motherhood.

The continuum of experiences of women with disabilities through childhood and adulthood as mediated by society, law and institutions--some of which have been addressed in this article--remains both a complex and contested domain that mediates the experience of reproduction and parenting of women with disabilities. The one thing that can transform these experiences is to constantly seek to advance a framework and understanding of consent that recognizes the agency of all women and enables them to exercise their rights.

By Rupsa Mallik

Director, Programmes & Innovation, CREA

Email: rmallik@creaworld.org

Twitter: @RupsaMallik

Notes & References

(1.) Meenakshi Sinhal, "Disability Limits Marriage Choices: Online Survey," The Times of India, May 11, 2011, http://timesofindia.indiatimes.com/india/Disability-limits-marriagechoices-Online-survey/articleshow/8245445.cms.

(2.) Kamayani Bali Mahabal, "Abortion Laws Grey Zone: Retarded Mothers," India Together, August 14, 2009, http://www.indiatogether.org/mtpcase-women.

Census of India. "Measurement of Disability through Census. National Experiences: India." Office of the Registrar General and Census Commissioner, India, 2009. https://unstats.un.org/unsd/demographic-social/meetings/2016/bangkokdisability-measurement-and-statistics/ Session-6/India.pdf.

Mahabal, Kamayani Bali. "Abortion Laws Grey Zone: Retarded Mothers." India Together, August 14, 2009. http://www.indiatogether.org/mtpcase-women.

Shwartz, Adria. "Taking the Nature out of Mother" in Representations of Motherhood, edited by Bassin, D, Honey, M. et. al. New Haven: Yale University Press. 1994.

Sinhal, Meenakshi. "Disability Limits Marriage Choices: Online Survey." The Times of India. May 11, 2011. http://timesofindia.indiatimes.com/india/Disability-limitsmarriage-choices-Online-survey/articleshow/8245445.cms.

Vance, Carole. "Interrogating Consent." Global Dialogue on Decriminalisation, Choice and Consent. Organised by Creating Resourced for Empowerment in Action (CREA). Rockefeller Foundation Bellagio Center, Italy. (October 22-24 2014). http://www.creaworld.org/sites/default/files/Global_Dialogue_on_Decriminalisation.pdf.
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Title Annotation:spotlight
Author:Mallik, Rupsa
Publication:Arrows For Change
Geographic Code:9INDI
Date:Dec 1, 2017
Words:1809
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