Lucy Howard reviews a new book by a disabled author, Susan Nussbaum.
Good Kings Bad Kings tells the story of daily life in a care home for young disabled people, the Illinois Learning and Life Skills Centre (ILLC). This story is told from the perspectives of a range of characters, including the residents (or ‘inmates’ as they wryly call themselves), the staff who work there, and the staff at Whitney-Palm Health Solutions, the organisation that runs ILLC (and many other care homes) and ‘recruits’ residents.
The book is arranged in short chapters, each told in the first person by one of these characters, and told in their own voice, which is an effective way of showcasing their personalities. While it can be complicated, at least at first, to remember who’s who and where they fit in the story, it is a clever concept as it enables the reader to engage with the characters instantly, consider all the different viewpoints and perspectives, understand how care homes operate, and see how conflicts arise. Although Good Kings Bad Kings is fiction, it could sadly also be seen as non-fiction, as events in the lives of the residents have been all too familiar in real-life cases over recent years across the US and the UK.
Situations that are unflinchingly portrayed in the novel include shocking physical and mental abuse, from staff constantly swearing and shouting at the residents, hitting them and putting them down, to one of the young girls, Mia, being repeatedly raped by one of her carers – but she is too scared to say anything to anyone for fear she won’t be believed. The lack of freedom and privacy is also a constant theme. Residents share rooms and have every second of their day mapped out for them. Those who have manual wheelchairs should, by law, have powered chairs, but are not given them, because, as Joanne (the only disabled staff member) points out, it would give them more autonomy, and keeping them immobile ‘makes it easier on the staff.’ The effects of funding cuts mean staff shortages and restrictions in a place where there is already a chronic lack of vital assistance and care, and where the young residents have a low quality of life. Many of these residents have already come from difficult backgrounds, such as broken families and being passed around from foster home to foster home, and at ILLC they are reduced to strict mealtimes and bedtimes, statistics…’amount of air breathed, blinks per hour’… a regime of invisibility.
Things many of us take for granted are impossible for them like buying a takeaway; enjoying a beer; going to the cinema. They dream of these and of getting their own homes, of being more independent. It is a big irony that a place that is supposed to care for them, help them, and ensure that their futures are as bright as possible, is where they are at their most vulnerable. Despite the sombre subject matter, the novel is very readable and engaging, and its constant dark humour proves effective in driving the point home and exposing gaping flaws in care systems. When Whitney-Palm calls an emergency meeting after a spate of deaths in their facilities, its manager suggests sending out a press release in which they state that a certain number of deaths are to be reasonably expected in situations like this. The PR guy asks, ‘How many deaths are reasonable? Is there a number? The manager replies: ‘However many of them have died. That’s the number.’ This is Susan Nussbaum’s first novel, and it is an assured debut.
As well as being disabled herself, her background in writing plays with a focus on disability and social injustices, and her work in the disability field, including helping young people with disabilities, gives her all the knowledge, experience and power that is essential for the success of a book like this. She describes herself as a ‘genuine crip writer.’ There are glimmers of hope, as seen in the staff who are the ‘good kings’ and want to make a positive difference, and conquer the abusive and indifferent ‘bad kings’ (and it would have been good to see more of them). It is also a joyous moment when the residents decide enough is enough and empower themselves to make their voices finally heard. But this is largely a damning and all-too-true indictment of how disabled people are treated when in supposed ‘care,’ and it should be read by anyone who has anything to do with the care of disabled people – and by everyone else too.
Good Kings Bad Kings by Susan Nussbaum is published by Oneworld. It will be available in paperback from 6 March priced £8.99