A story no less beautiful

Compelling and at times difficult to watch, Best Interests raises a topic that rarely gets airtime: parenting a disabled child. In this instance the daughter, Marnie, has a rare form of muscular dystrophy and her life expectancy is limited. Sensitively written by Jack Thorne, a long-time campaigner for disability rights, the programme has wider ramifications.  

While its main focus is Marnie's best interests, it encapsulates much more and raises many questions: What is a meaningful life? How do we conceptualise a person's best interests? Who to trust and what are peoples' motivations? Who has capacity and who doesn't? How do different people grieve and face their worst nightmare? How deep is ableism interweaved in society? It also beautifully illustrates the tension between keeping hope alive and the agonising recognition of reality.

Although my son does not have a life-limiting condition (not to the severity that Marnie does),  there were many aspects to which I could relate as a parent carer. The daily struggles for many families are portrayed with searing accuracy: the fight for services, feeling unsure who to trust, experiencing decisions made out of sight and with no input from you, the difficulties when different family members are on different pages, feeling guilty that you cannot do more to help your child. Disempowerment, exhaustion and isolation are common. 'I learnt to put my shoulder down and just keep charging', says Sharon Horgan's character Nicci.

Families who had been through a similar process were consulted on the programme, which adds poignancy to the array of responses: ranging from anger, denial, despair, resignation, withdrawal to using drugs or alcohol to cope. In fact, these are many of the traditional responses to 'grief' which can all add to the complex dynamics between family members and professionals. The guilt of taking time for yourself, the exhaustion that sometimes erupts into anger in response to people's thoughtless or sometimes just everyday responses to an extraordinary situation.

Several themes stood out for me as a parent of a disabled child. Firstly, the comment in court about 'prioritising' people during the pandemic, which reflects the increased number of 'Do Not Resuscitate' notices that were placed on disabled people. This makes explicit the often implicit assumptions and ableism that exists in society, and illustrates how this can negatively impact trust.

Secondly, the sheer level of feeling 'on edge' that the parents, and family as a whole, experience. From the crashing down from the fun of a break away at the start to the repeated emergency calls. Many of the family carers I have spoken to, in my research and beyond, describe this level of anxiety/stress on a daily basis, even when their child does not have a life limiting condition. The programme captures this reality so well.

The third point that has stayed with me is the beauty of the relationship between siblings. A whole array of emotions are captured from hate, love, anger, sorrow, jealousy and yearning. Relationships between siblings are so key and can be at risk of being neglected – the whole focus being on the disabled child or child-parent relationship.

It is also testament to the programme that although there is plenty of drama, no one is a villain. All are doing their 'job' and embracing their role including the ethics committee that do not consult with the parents before making their decision. Many of the professionals come across well – sensitively breaking bad news, relating in a human way to the family, making the parents feel heard and understanding the enormity of the experience. But no one can make the diagnosis disappear.  

Hopefully, for those families whose lives are represented in this drama seeing a story that mirrors their lives, in some way, can be helpful in honouring their experiences. For those who don't know the realities of parenting a disabled child, it may help raise awareness and greater understanding of difference.

To conclude, I quote the words of the professional to the parents who first diagnosed Marnie: 'There are many beautiful stories in this life, please don't assume that Marnie's story will be any less beautiful. It will just be different and you have to adapt to that difference. You''ll find such joy if you do'.

• Dr Joanna Griffin is a parent carer, Counselling Psychologist and Assistant Professor at the University of Warwick. She is author of the book 'Day by Day: Emotional Wellbeing in Parents of Disabled Children and runs Affinity Hub, which signposts to emotional support for parent carers.