Who gives a damn about intellectually disabled people and their families? Care-less spaces personified in the case of LB

Abstract

On 5 October 2015 the inquest into Connor Sparrowhawk’s death began. A young autistic man, aged 18, died in the bath on 4 July 2013. He had a seizure. The rolling tweets from @LBInquest are harrowing to say the least. Unimaginable torture for Sara and Richard (his mother and step-father), as well as his siblings and others caring. Comments from the inquest such as ‘I felt that Connor should be checked on every 5 or 10 minutes when he was in the bath because of his epilepsy’ and ‘ensuring someone was outside the door when he was bathing was basic nursing care’ sound all the alarm bells for lack of care, because allegedly this did not happen. Clearly there was no one person looking out for him when he needed it the most. On 16 October 2015 the inquest jury found Connor’s death was contributed by neglect. This article will explore the absence of care in a care-less system.

Keywords:

• care
• care-less spaces
• Connor Sparrowhawk
• death
• family
• intellectual disability
• LB

I recall when I worked in supported living that a resident was refused a bath if there was no additional staff member to sit outside the bathroom in the case of those with epilepsy. However, this is not just about whether there was anyone outside the bathroom listening out for unusual splashing noises, albeit critical in the case for the life and death of Connor. This one case is just one of many where care-less spaces exist and infect our very humanity. Death is physically and emotionally beyond words, but here I try to deliver a narrative.

On 4 July 2013 Sara posted on the day of Connor’s death (commonly known as LB – laughing boy): ‘LB died this morning. In the bath. In the unit. He would be pleased the CID are involved’. And the day after, she posted:

I made sounds at the hospital yesterday I never expected to make. Or even knew I could make. Sounds of keening, howling, inconsolable, incomprehensible grief, sorrow, despair and darkness. Our beautiful, hilarious, exceptional dude was found unconscious in the bath in the unit before a planned trip […]. The psychiatrist from the unit who called me at work around 10am to say that LB had been taken to hospital, gave no steer he was pretty much dead. I asked her (as an anxiety induced after thought) if he was conscious when he left the unit in the ambulance. She said they’d cleared his airway but he hadn’t regained consciousness. She made no suggestion I should urgently go to the hospital or that I should go with someone. It was a care less call. […]. I arrived at the hospital twenty or so minutes later, with a work colleague who (so, so kindly) insisted on coming with me. I was immediately faced with a LB has a ‘dead heart only kept alive by a ventilator’ story. This news generated my, to that point, unknown sounds. I hugged him while he died. Unspeakable horror. Agonising pain. […] We are now in a space I can’t describe. […] I can’t move beyond wondering how a hospital unit, with only four or five patients, who made such a fucking fuss about asking LB’s permission for us to visit on a daily basis, could let him die in the bath. (Ryan 2013; emphasis added)

This physical and emotional reaction to the death of someone so close is not uncommon, as Ribbens McCarthy states in relation to being told of her husband’s imminent death:

At this point I felt as if someone had lobbed an axe into my chest and that I was then expected to carry on walking around in the world with an axe in my chest and tears pouring down my face. (2013, 190)

This absolutely highlights how we understand suffering. Frank (2001, 355) explains that loss and suffering (whether present or anticipated) is an ‘instance of no-thing, an absence of what was missed and now is no longer recoverable and the absence of what we fear will never be’. Bureaucratic processes cannot manage this suffering; bureaucratic processes are care-less. Yet we need them to be care-full, ethical and humane to make change.

Returning to Connor, we ought to assume he was in a caring and care-full space. He was ‘in care’ after all. It seemed he was not, as evidenced here by Sara in a reflection on her blog:

The problems here don’t lie with learning disabled people not having ‘voices’. They lie with people not listening. Not understanding. And not caring. […] I don’t think people will really start to care properly until they see learning disabled people as full and valued members of society. At a micro level, LB (laughing boy) was valued. There has been an enormous response to his death which has been a source of some comfort. People seem genuinely upset and angered by what happened to him. A happening in which he had no ‘choice’ or ‘voice’, or other crap like that. This upset and anger has come about because people got to know him as a person, as a funny young man who had a refreshing approach to life. […] People said for years said I should write about LB; he was such a hilarious dude. I started this blog partly as a way of recording these funny stories. I didn’t anticipate it would be widely read. Or that it would take such a terrible, terrible direction. […] Not every dude like LB will have someone to write their story (if they can’t do it themselves). We need to find other ways of making people care. Of accepting and celebrating learning disabled people as fully human And then maybe the government wouldn’t baulk at the ‘cost’ of setting up a review board to investigate how and why these deaths are occurring. But then, of course, they probably wouldn’t happen with such regularity. (Ryan 2013)

I can, in an instant, feel the enormity of carelessness, lack of care and how voices that are real representations of people are missing, or indeed talked about in an utterly meaningless way. Connor, had no part to play in his own death, and existed within a care-less space, where emotional, practical and socio-political damage was executed. Tragic as this is, what Sara is asking, or rather stating, in her blog is ‘who will speak up for intellectually disabled people if m(o)thers do not?’ We all have to!

This was Sara’s response in her blog, about the death of her son, but in another example of how mothers experience their position as a care-full or caring mother I turn to the work of Vorhaus (2016). He identifies Emily Kingsley’s ‘Welcome to Holland’, as Emily likens having a disabled child to landing in the wrong destination after booking, planning and packing for a trip to Italy. Emily, metaphorically, lands in Holland. Not what she expected, but says ‘if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland’ (Vorhaus 2016, 116). Vorhaus (2016) discusses this in some detail, but goes on to suggest that not all parents share Emily’s sentiment. Vorhaus starkly compares this with Cheryl Arvidson-Keating’s piece called ‘Welcome to Fucking Holland’. This is in response to her daughter who has significant and multiple impairments; the contrast in attitude is striking. Cheryl is discussing how little respite is available, and after a few days away without her daughter, she reflects:

I am so bloody tired of everything. Five child-free days in Toulouse was wonderful … Coming home and here I am again … all I want to do is escape, either physically, or in to my head… […] everything revolves around her […] I resent that I have a future that involves changing adult nappies and using a bath-lift and knackering my back lifting someone who doesn’t have muscle control. […] I resent the fact that my beautiful, clever, funny, amazing daughter, who I love so much it hurts, is not going to have the life that she should have had; and that we will not have the life we should have had with her. I resent the fact that our entire fucking life has been hijacked by one measly gene fragment that doesn’t even have the decency to be easily found. Welcome to fucking Holland. It’s shit here. (Vorhaus 2016, 117)

Vorhaus is making a point in contrasts, but also recognising that this life, a disabled life, the caring and care-full life, is hard and indeed often care-less. For the one caring as well as the intellectually disabled person. He also goes on to identify that Cheryl writes a retrospective piece about how she felt she had to go through that dark depressive place as she hit ‘rock bottom’ as a way of coming to terms with everything that goes on in mothering a profoundly disabled ‘child’. The point is that if Cheryl had been in a different caring space, when at her darkest moment, a different outcome might have occurred. The implication being that she might have taken her own life. Of course, this is unknowable, yet what we can know is that care-full spaces are always necessary, or tragic circumstances occur: they are needed for the mothers, fathers, siblings and for those caring. The National Health Service should know this? The socio-political sphere does know this.

Still, we are awaiting justice, humanity and caring. All of these quotes capture everyday life, but they also afford us a glimpse into the broader and more violent emotional, practical and socio-political caring spheres, or care-less spaces, around us (Rogers forthcoming). That is to say, not only do mothers and fathers with an intellectually disabled child have a deeply emotional response to their lived experiences, but the legal, moral and political systems also disturb, and can ultimately destroy lives without caring as they leak into the family, domestic sphere and more ‘private’ domain. I have found rhetoric within education and health discourses with regards to intellectually disabled people, and it seems the mother and others caring are amongst those who are ‘cared for’, apparently. Yet as it is the:

well-dressed businessman with his rights of autonomy; freedom, of contract; and presumption of innocence can be well advised by our law graduates. The exhausted mother of the disabled child, with little autonomy, freedom or innocence, cannot. She is an anomaly, outside the norm. Not even, perhaps, of particular interest to lawyers. After all she will not be able to pay any fees. Yet everyone cares. Everyone is cared for. (Herring 2013, 1; emphasis added)

So I reflect on Sara’s story here because her personal circumstances have touched many lives, and as someone who knows her as a fellow academic and a mother, it seems fitting to remember Connor, or LB as he was known.

From my reflection, and two years after Connor’s death, I viewed a video online posted by Sara. It was moving, celebratory and yet stark; stark in the telling of a care-less story about the meaningless death of a young man inhabiting a care-less space. Sara, Richard and Connor’s siblings, friends and others caring all reminisce. This painful but care-full narrative speaks volumes, and as Sara speaks for her LB she does so for all intellectually disabled people. She poignantly says in the video:

My beyond wildest dreams would be that – we are never going to achieve this in a million years – but would be that we didn’t even have to talk about learning disabled people, because, because there wouldn’t need to be that division, because everybody would have a right to live where they choose, everybody has an imagined future, and the distinction between being learning disabled and being non-learning disabled would become sort of irrelevant because it isn’t an issue. That, that I suppose is my wildest dream, but whether that will happen or not, I, I don’t know, so we’ll reach for the stars and see what happens. Coz I think Connor’s up there. (Ryan 2015)

This might seem too much to ask, but if we collectively do not reach for the stars, aim for a caring, care-full and humane society, then we do not have hope. After the current inquest into Connor Sparrowhawk’s death we might feel hopeless. I do not know. That said, we cannot – must not – stop trying to make changes within a care-less political system for intellectually disabled people.

Not all disabled people and their families suffer in the way I am discussing here. Yet we know suffering happens, and is needless. The suffering involved in losing a child is unimaginably hard to contemplate. Still, it happens. Notably, according to Wilkinson, suffering is not accepted:

as a normal and inevitable part of our human condition. This is because suffering hurts too much. The problem with suffering is that it involves us in far too much pain […] Suffering destroys our bodies, ruins our minds, and smashes our ‘spirit’. ((2005, 1; original emphasis)

Although within sociological debates suffering is often discussed in terms of social suffering, and frequently in relation to mass atrocities (Cohen 2001; Wilkinson 2005), it is not exclusively the case, because suffering is a ‘deeply personal experience’ (Wilkinson 2005, 16) so it can be difficult to understand socially. It also has the potential to damage every aspect of personhood. Certainly in dying, people suffer acute emotional pain and, as Wilkinson (2005, 17) suggests, suffering is ‘always against us’. Suffering might always feel care-less, but how we respond to it socially, ethically, politically, and collectively need not. Yes there are different caring issues, but when it comes to thinking about humanity and care we all want the same thing – to live in humane and care-full conditions.

Disclosure statement

No potential conflict of interest was reported by the author.