Exploring How Sickle Cell Disease Impacts the Selection of Romantic Partner and Reproductive Decision Making of Adults with Sickle Cell Disease Living in The United Kingdom

This thesis is an empirical exploration of how Sickle Cell Disease (SCD) impacts the partner selection and reproductive decision making of adults with SCD living in the United Kingdom. Its impact on status disclosure and moral responsibility of the study population will also be elucidated.
Drawing on qualitative interviews of 23 adults with SCD in the UK, I used the concepts of Embodied Risk, Social Model of Disability and Social Model of Relational Disability to explore and describe how embodying SCD impacts the lives of these individuals as they select partners for long term relationships and exercise agencies to make reproductive decisions.
For study strategy, the participants were recruited from the target population as the experts since they are the ‘experiencers’ of the phenomenon being studied, to ensure that the research makes their voices heard rather than the voices of ‘Outsiders’ who are not embodied with SCD nor its burdens.
I situate this analysis within a wider context of normal/abnormal, health/illness dichotomy created by the medical hegemonic culture that seeks to eliminate SCD from society while probably unintentionally neglecting the social, political and psychological oppressions of the target population.
I argue that the impact of SCD on partner selection, reproductive decision making, status disclosure and moral responsibility of these adults living in the UK offers an understanding of the level of stereotyping, marginalization, discrimination and stigmatization this target group are subjected to as inaccurate genetic information is flung into society ‘unhinged’. The life course of these people whose bodies happen not to fit into culturally accepted norm for romantic partnership and reproduction are thereby ‘disrupted’.
Findings reveal the widespread psycho-emotional disablism experienced by the participants and the ‘complex invisible works’ they perform as they struggle to find partners with whom to form romantic relationships and possibly parent children. These ‘works’ or ‘labours’ in their romantic spaces are embedded in the oppressive and partial information of the popular culture. This thesis brings to light these difficulties faced by people living with SCD, the restriction and isolation they experienced as they try to make family, bringing chaos and disruption to their life-pathways. The genetic screening result of the SCD-affected individual becomes defined and understood, not just as a biological phenomenon assumed by the NHS but by damaging consequences within the social domains of life. It is hoped that the thesis will contribute to the deconstruction of the inaccurate narratives of genetic information perpetuated by the dis/uninformed powers in the public forums that label SCD-affected persons as unsuitable for romantic partnerships and reproduction.