By Ing Lee
A book about people like me becoming parents
When I first saw the news on a disabled activist’s social media account, that this book was coming in February 2023, I was beyond excited. It is a collection of stories by disabled parents from the UK, USA, Canada and Australia. It includes accounts from parents with physical or intellectual disability, chronic illness, sensory impairment and who are neurodivergent.
I live with a neurological condition and now mobilise with a stick. Because of my reduced mobility, I did not feel confident that I could be a mother. What if I trip and fall on the baby? What if I cannot run after the baby outdoors? I started joining forums and support groups for parents with disabilities and read about the adaptions they make, for example, to the baby cot, baby carrier or pram, to enable them to carry out childcare activities. People often find comfort reading stories of others with similar health conditions. As a support group member for my condition told me, it makes one feel less alone.
Social disability model vs biomedical model
In medical school, clinicians are taught the social disability model versus the biomedical model. We are familiar with the concept that it is society and the environment’s lack of accommodation (e.g. not providing step free access) that disables and stops a person with disability from participating in society and fulfilling their potential; whilst in the biomedical model, the problem lies with the individual which needs to be fixed.1 The two concepts do not have to be mutually exclusive, and providing appropriate medical treatment can also be a form of social accommodation.1
Ableism and medical communication
However, ‘ableism’ was something new that I learnt from people with lived experience through MuM-PreDiCT’s research work, and from disabled activists that I follow. It is a system that values able bodied people.1 This book provides context to how this was experienced. A key theme is how communication needs to be sensitive, for example when parents with disabilities go for antenatal scans, or take their new baby for the hearing test screening.
Medical communication training taught us to soften the blow of a bad medical news with some prewarning, for example, ‘I am sorry to tell you that…’. However, in the context of announcing the screening finding that the baby has the same condition as the parents, if this was framed as bad news, or if the clinician implies that the parent may want to consider termination, then this is sending a signal to the parent that their lives are not valuable because of their condition or disability. Many disabled people, including myself, may have been / still on a long journey to reach self-acceptance, overcoming what the disabled activist coins as ‘internalised ableism’. Therefore, such comments, even if well-intentioned, can be upsetting.
The book also talks about when the relationship between parents and health and social care professionals can break down, such as when parents with disabilities are judged to be incapable of caring for a baby. Health and social care professionals are trained to provide honest information to enable people to make informed decisions, but such conversation has to be very sensitively handled.
In recent years, the medical curriculum has got better at training clinicians to be culturally sensitive and using inclusive language when providing care to people from the LGBTQ+ community. Perhaps it is time that language and care that is inclusive to disabled people should also be emphasised in medical training.
Proud to be disabled
I cried through some of the stories. Even though I am not a parent, this was a book about people like me, it validated some of my thoughts and feelings. It shared how these parents are proud of their disability and overcame many challenges to bring up their beautiful children. There were plenty of stories that were positive and uplifting. In one story, an entire school chose to learn sign language as a second language when they had new students who were children of deaf adults. If you are interested in gaining insights into the experience of disabled parents, do give this book a read!
References
1. Hunt J. Making space for disability studies within a structurally competent medical curriculum: reflections on long Covid. Medical Humanities 2023;49:105-116.