Social Lives
Author: Mohamed Maalim – PhD Researcher, of the ALL Institute, Department of Psychology, Maynooth University
11th of July is celebrated as World Population day to highlight global issues on sexual and reproductive health and rights gender equality and the right to family life. Personally, as a husband and father to five children, am blessed and privileged to be able to exercise this fundamental human right to family life and family unity as enshrined in international and European human rights provisions. Many people, however, including people with disabilities, refugees, and others requiring international protection do not enjoy the right to adequate sexual and reproductive health in particular.
In this piece, I will discuss sexuality issues for people with disabilities from the perspectives of personal understanding and professional practice both as a research student and a registered Occupational Therapist. From an Occupational Therapy point of view, sexuality is considered an activity of daily living (ADL) by the American Association of Occupational Therapists. Occupational therapists may include sexuality as part of a routine evaluation of clients and address this area in occupational therapy interventions. Sexual activity and intimate social participation are part of meaningful occupational participation contributing to personal satisfaction while sharing intimate relationships may potentially impact one’s wellbeing and quality of life. Sexuality should not be misconstrued to mean only physical intimacy but as a holistic concept encompassing sexual activity, decisions, communication, identity, and choice.
Before I share my experiences on this topic it is important to remind ourselves that the fundamental right to sexual and reproductive health for all must come with strategic plans to make sure these rights are enjoyed. In particular, for people with disabilities, the Convention of Rights of Persons with Disabilities CRPD calls on State parties to ensure that effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood, and relationships, on an equal basis with others. Several articles of the CRPD including Article 9; accessibility, Article 16; protection from gender-based violence, Article 22; right to privacy, Article 23, address discrimination in all matters relating to marriage, family, parenthood, and relationships and Article 25, equal access to health services has specific mention of SRH and population-based public health programmes. Ensuring these rights requires our collective input as a society.
My personal experience on the discussion of sexuality is somewhat limited. In my household and community at large growing up, initiating discussion on issues of sexuality was something generally abhorred and seemingly constrained under the premise of private settings accompanied by low-toned and almost embarrassing exchanges. The perception that people with disabilities can also be sexual and need affection including intimate relationships was somewhat distant as their need for basic protection and welfare superseded everything. Fast forward into my professional life and suddenly, I was required as part of the job description to support my clients in achieving their independence goal including supporting their sexuality as an area of ADL. I do not, however, recollect taking any modules under professional training (except for a few slides on Sigmund Freud’s Psychosexual theory of development) to prepare me for the reality of dealing with sexuality as an area of support as required by my clients.
I had an opportunity to work in disability services primarily for children and adults with intellectual disabilities as well as with children with Autism. I would firstly mention that these services offer the best available quality services under very limited resources. I’ve, however, confronted situations where young persons with disabilities who exhibited ‘sexual’ behaviours were not accommodated holistically but rather dismissed as ‘challenging inappropriate behaviours’. These children’s sexuality in regard to their changing bodies and the innate requirement for sexual gratification was not adequately understood and addressed partly in fear of encouraging ‘unacceptable’ behaviours. The silence and lack of robust evidence-based strategies to support these young people’s sexuality correlated with poor quality of life because a lot of time and energy was being wasted in ineffective behaviour support plans that came short of addressing the underlying issue. This difficulty for the particular setting was, however, addressed better when the focus of interventions shifted to a person-centred practice model where the needs of the individual came first and the support, skills, and attitude of support staff shifted to include the holistic view of the person.
As a research student with a particular interest in Assistive Technology (AT) as an enabler of participation for people with disabilities and older persons in social, political, economic, and personal endeavours I need to reflect on the subject matter of sexuality and role of AT. I came across a publication recently which I would confess was a revelation for me which directed us to the fact that the WHO’s Assistive Product List (APL) did not consider any sexual AT as essential. The article, albeit acknowledging that the discussion on sexuality is a sensitive topic, nevertheless, suggests that sexual rehabilitation is being ignored even though the CRPD includes an article urging state parties to design and implement comprehensive rehabilitation services.
I would like to end this discussion by encouraging robust deliberations on the issue of sexuality for people with disabilities from all perspectives including people with lived experiences in attempt to promote an inclusive society as outlined by several human rights and other similar treaties, conventions, directives and appeals from a variety of civil societies.