Historical views about disabled people’s rights to reproduce and rear children originate from beliefs that consider disabled persons to exist outside the boundaries of reproduction.
These views have strongly influenced the dearth of information, policy and services relating to disabled parenting, indicating an unspoken assumption that disability and parenting are incompatible. Disabled persons are challenged by society’s refusal to recognise them as potential parents and functional family units, with the greatest of concerns revolving around their ability to raise a child and their presumed incompetence.
Cases where children are taken away from disabled parents because they are deemed unfit, sometimes with legal procedures starting prenatally, have been reported. Moreover, care and health professionals as well as the family court system are known to operate from the deficit model of disability.
Such a model reflects their view of disabled persons as inappropriate and incompetent for the role of parenting. Disabled parents are seen as offering a not ‘good-enough’ type of parenting, falling short of the ideal parenting benchmarks, with parents with intellectual disability perceived even more negatively.
The United Nations Convention on the Rights of Persons with Disabilities, which Malta ratified in 2012, asserts the right of persons with disability to found a family and to have access to age-appropriate information, reproductive and family-planning education. It also states: “In no case shall a child be separated from the parents on the basis of a disability of either the child or one or both of the parents.”
Moreover, the national disability policy makes direct reference to sexuality and parenthood. The policy confirms that “persons with disability have the right to form intimate relationships and raise families”. Further measures in the national disability policy relate to the training of professionals to ensure that support is given to persons with disability to fulfil their roles as parents effectively.
In light of the above, it is thus crucial to speak to disabled parents themselves about their experiences. Listening to the voices of disabled parents exposes gaps in policies and practices that ignore them and impinge upon their parenting experiences.
Through a memorandum of understanding between the Faculty for Social Well-being at the University of Malta and Aġenzija Sapport, an action research project was carried out, aimed at hearing the voices of disabled parents in order to inform future policy and practice.
Disabled parents are seen as offering a not ‘good-enough’ type of parenting
Recommendations that emerged from the research conducted with parents included the need for support services, for sensitivity and awareness-training, especially among health and care professionals, and for further accessibility.
Contrary to public perception, international research has shown how disabled persons are capable of being good parents and that they tend to show remarkable resilience in finding ways of overcoming impairment-related barriers.
Nevertheless, these parents may need support. This is often provided by the extended family but state support is now also available through Aġenzija Sapport’s newly set up Family Unit. This unit aims at supporting parents in acquiring parenting skills as well as providing other services that will give disabled parents equal opportunities in their parenting role.
The national strategic policy for positive parenting refers to Aġenzija Sapport as the entity that offers support to disabled parents so that they can have a more positive parenting experience. For this reason, this project included both first-hand research with disabled parents as well as training of professionals.
This training targeted sex education that allows persons with disability to make informed choices about parenting. The sex education resources that were explored have been used in foreign contexts for quite some time. Some of these interactive resources have been created specifically to be used with persons with intellectual disability. To complement this training material, Aġenzija Sapport purchased specific resources, such as the Real Care Baby, an infant simulator that gives a real life experience of caring for an infant.
Among other recommendations that emerged from this research project was the training of professionals in the use of competence-based assessments and in the delivery of evidence-based parenting skills training programmes, which address the specific needs of parents with disability, especially those with intellectual disability. This training will be carried out later this year by an internationally renowned expert in the field.
Julia Farrugia Portelli is Minister for Inclusion and Social Well-being.
Claire Azzopardi Lane is the deputy dean of the Faculty for Social Well-being and head of the Department of Disability Studies.