People with disability tend not to have children due to social barriers rather than to their physical or intellectual impairment. Although parenting is supposedly based on a principle of equal citizenship rather than parental competence, parenting by people with disability is perceived negatively by sceptical family members, friends, health practitioners and complete strangers.

Parental experiences are further overshadowed by inter-related problems, such as low income, the risk of above-average health problems, ineffective professional support and social networks and negative public responses.

Women with disability as mothers

Disability rights advocates suggest that the politics of eugenics and anti-disability sentiments underline the repression of the sexuality and the reproductive rights of women with disability. While motherhood is a natural part of a woman’s identity, women with disability tend not to be accepted as having the status of motherhood, and are constrained by the community’s negative perceptions and assumptions.

Women with intellectual disability, in particular, tend not to be accepted as having an adult status. This leads to further disempowerment and isolation, compounded by the presumption of incapacity, both to consent to sexual relationships and to parenthood.

The ability to lead an autonomous life is mistaken for the competence of being a parent

The message given out by medical field professionals may also suggest that women with disability are not eligible for traditional, societal female roles. These women recount the lack of sensitivity that health professionals demonstrate towards their right to have a child, reinforcing beliefs that they are unable to adequately care for their children.

Medical choices concerning contraception and surgical irreversible methods, such as sterilisation, have been performed without the consent of these women, with the aim to protect them against ‘unwanted’ pregnancy.

The right of parents with disability to have a child is often overshadowed by the possibility that the child might carry a genetic condition which will result in a disability. The concern is often that women who suffer from a particular disability will produce a child with similar conditions.

United Nations Convention on the Rights of Persons with Disability

In October 2012, Malta ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which asserts the rights of disabled people to a family life. Article 23, Respect for home and the family, includes the following rights among others:

“To found a family . . . to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education.”

Yet, numerous times, people with disability find themselves in positions where choices over parenting are decisions that others make for them. In order to make informed choices about becoming a parent, knowledge of one’s fertility and control over sexual encounters is required.

Possible negative attitudes held by both family members and professionals not only influence the way women with disability see themselves, but also restrict necessary information they require.

In this way, their ability to make informed decisions related to their sexual lives and procreation is affected. Limited support during pregnancies, lack of support in the development of parenting skills and not being given social support are also among the experiences of women with disability.

Family support and appropriately responsive services are identified as critical to the development of a positive parenting context for people with disability. Yet, feelings of isolation, vulnerability and fear of losing the child are known to be a result of the disempowering effects of inadequate responses adopted by professionals and services.

Parenting adequacy is reported to focus mainly on the narrow societal concepts of care, which is equated with functional caring, although caring for an infant is a relatively short-lived phase in the life-long relationship between mother and child. Thus, when mothers are not able to fulfil a physical task related to child rearing, they are regarded as unable to function as parents.

Yet, despite the recognition of fundamental rights of people with disability, the ability to lead an autonomous life is mistaken for the competence of being a parent. Unfortunately, many women report a presumption of parental inadequacy from the initial contact with health and community services, with some reporting barriers even to take their newborn home from hospital.

As a result, women with disability tend to view interactions with community social services in a negative light, as they fear the removal of their children. Moreover, in a society rooted in both patriarchy and ableism, being a single mother and having a disability is reported to make women even more vulnerable.

The true experiences

Debbie’s experience reflects the narrow concept of motherhood just described. Born with a congenital disability and institutionalised since a very young age, she had a very different vision of her role as a mother.

Yet, lack of social structures that allow parents with disability to exercise their rights as parents put Debbie in a position where she signed off her son, David, for foster care.

Having no alternative, and in a very vulnerable state of health following childbirth (she spent three months in hospital), Debbie is now allocated a two-hour visiting bracket each week to bond with her son.

Debbie, who is a single mother, feels isolated and has been seeking support from local agencies and NGOs to fight for her rights as stated in the UNCRPD. Article 23 of the UNCRPD concludes:

. . . “In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents.”

Debbie, who has held a full time job for the last 18 years, has been denied the role of mother due to her mobility impairment, lack of accessible accommodation and lack of support.

In countries such as the UK, a nurturing assistant is employed to facilitate the mothering of a child in such circumstances as those Debbie was in. The role of the nurturing assistant is to help in the background rather than to actively interact with the baby.

Funding for such supporting roles is provided by the State. Such is the experience of disabled artist Alison Lapper, who lives with her son Paris in the UK. Alison, who has similar mobility impairments as Debbie, could rely on the professional and financial state support that enabled her to successfully take on her role as mother.

Corinne and Taina, on the other hand, are bringing up Corinne’s daughter, little Mariah, together. Corinne’s unplanned pregnancy took her family by surprise, and it was by no means an easy decision for the family to support Corinne.

However, notwithstanding the lack of financial and support services the family has encountered, Mariah, Corinne’s two-year-old daughter, is being brought up close to her mother.

However, had it not been for Corinne’s family, Mariah, who also has a developmental disability, would most likely have been removed from Corinne’s care, given that the parental coaching and support services required are currently unavailable.

While Taina, Corinne’s sister-in-law, gives Mariah and Corinne all the required support on a full-time basis, Corinne has been busy learning more about practical mothering, as well as working part-time to contribute actively to her family’s financial upkeep.

The failure to parent lies in inadequate support, rather than the disability

Corinne understands she has been lucky to find support from her family and is aware that, without it, she would have likely lost her daughter to child welfare services. Corinne concludes with a statement I’ve actually heard my own mother say about me:“...She is my blood, she is part of me, God forbid something happens to her.”

The need for support networks for parents with disability is underlined by the experiences of these two mothers. They confirm that failure to parent lies in inadequate support rather than the disability itself. Believing in the capabilities of parents with disability, and thus providing professional, constructive, flexible and co-ordinated assistance, has been proven to be the most successful of strategies. Recommendations lie in a person-centred, rights-based approach to meet the needs of women with disability.

The implementation of Article 23 of the UNCRPD, including sex education and family planning, together with adequate parenting training and support, will result in improved parenting outcomes for people with disability.