Between Choice and Judgement: Parents with Intellectual Disabilities
Even if the choice of becoming a parent is a fundamental right as outlined in the United Nations’ Convention on the Rights of Persons with Disabilities (2006), parenthood can still be a challenging role for many people with intellectual disabilities.
The challenges come from the fact that parents with intellectual disabilities face more health problems and are more likely to live in deprived neighbourhoods, have low incomes and report low levels of social support. In addition, not only is it difficult for them to get access to proper support, they are also more often confronted by child protection services, resulting in a high rate of out of home placements. Furthermore, their choice to become a parent is regularly questioned and they are faced with persistent stigma about the quality of their parental functioning. Irrelevant of research outcomes, still, the majority of society is convinced that parents with intellectual disabilities should not be parent at all.
In this debate we highlight the stories of parents with an intellectual disability. Together with these parents, we will talk about the challenges they were facing when they chose parenthood and how they dealt with these challenges. We will bring in the perspective of looking at parenthood from the ableism lens, where the ‘perfect’ parent is one of abled body and mind. We will broaden the discussion to parenthood with disability more in general, as we will listen to the narrative of a researcher/mother who became disabled (paraplegia, wheelchair user) when her son was almost two years old. Finally, we will look at parenthood from a family quality of life perspective as we will share with the audience some take away messages.
Marja W. Hodes, PhD is a clinical, educational and family psychologist and head of the psychologists of the Dutch service organization ASVZ, department of family services. She has worked for the past 36 years with families headed by parents with intellectual disabilities. Together with her colleagues, she developed the toolkit “Talking About Children.” This toolkit supports future parents with intellectual disabilities to think carefully about the conseqences of having and raising a child. In 2010, she won a national award for this toolkit. With the money of this award, a website was built with free downloadable tools to support future parents. In addition to her clinical work, in 2008, she started scientific research concerning parenting by parents with intellectual disabilities at the VU Amsterdam. She developed the Video-Feedback Intervention to promote Positive Parenting for parents with Learning Difficulties (VIPP-LD). Regularly she advocates for parents with intellectual disabilities in court cases. She is the co-author of the chapter ‘The Choice of Becoming a Parent’ in the book entitled ‘Choice, Preference and Disability (2020). Marja is a board member and European representative of the Special Interest Research Group Parenting of IASSID.
Racheline, proud mum of 5 children.
Wijnanda, proud mum of 2 children.
Dr. Preethy Sarah Samuel is an Associate Professor of Occupational Therapy in Wayne State University, Detroit, MI, USA. Her many life hats include that of parent, teacher, researcher, writer, clinician, and disability advocate. She believes that family members are the best advocates for a person with an intellectual or developmental disability. They are the most crucial partners to any client-centred intervention developed for research or in the clinic. She longs to see service systems align to improve family well-being rather than training families to chase after health and disability services and professionals. To foster such a paradigm-shift the long-term goal of her research is focused on contributing to the development evidence-base of empowering family advocates to improve the quality of life of persons living with disabilities, particularly those from under-resourced backgrounds. One of the greatest challenges in measuring the efficacy of family empowerment is the scarcity of well-developed rigorous tools. Her research, therefore, focuses on the measurement of family quality of life which is a complex multi-dimensional social construct, particularly for racial/ethnic minorities from a low socio-economic status.
Dr. Marjorie Aunos, Ph.D. is an internationally renowned researcher, adjunct professor at two Canadian Universities and clinical psychologist. She was a Director of Professional Services within a health and social service agency in Montreal, Canada and founded an evidence-based program for parents with an intellectual disability that is nationally recognized and deemed as best and promising practice by accreditation Canada. Dr. Aunos is also the chair of the Parenting and Parents with Intellectual and Developmental Disabilities Special Interest Group (SIRG) of IASSIDD. As such, she is an associate-editor of the Journal of Policy and Practice in Intellectual Disability and was a co-editor on the double special issue on Parenting by persons with intellectual disabilities of the Journal of Applied research in Intellectual Disability. She has presented in numerous international conferences on the theme of parenting by persons with IDD and has published in various peer-reviewed journals. Furthermore, she has led several internationally-represented book chapters. The latest chapter was published in the book entitled Choice, Preference and Disability in 2020 and touched upon the Choice of becoming a parent. In this keynote, Marjorie’s interventions will be led by her knowledge of research and clinical practice, and then as a mother who became differently abled (paraplegia, wheelchair user) when her son was almost two years old. She will argue on the notions of parenting ability and capacity and how we are trained to perceive disability in our ableist world.
Geert Van Hove is Full Professor Disability Studies at Ghent University in Belgium. Together with a team of colleagues-researchers he is trying to capture the lived experiences of families and persons with all kind of labels. He is Director of Divergent, the Ghent University Center for Job coaching, and Director of Education of the Faculty of Psychology and Educational Sciences at Ghent University. At this moment he is preparing a collection of podcasts about Disability Studies and Human Rights. With these podcasts he wants to position story-telling as a way to learn from lived experiences about the impact of “une situation de handicap” on the lives of children, youngsters and adults with a label. Additionally Van Hove is working on a large research project about the way ‘local communities and their administration’ can become inclusive, welcoming and warm places for persons with disabilities in the Flemish speaking part of Belgium.