Danny's People, page 15
I was too distraught to explain all this at the time, and Lee stayed quiet and supportive through my tears. He never mentioned sending Danny away again.
Instead, he did something glorious.
He became one of Danny’s care team.
At the point when Lee decided he could face being an estate agent no longer, work with Danny was waiting for him. Not only would he do the home run from school every afternoon (freeing up some time for me to pursue charity and research commitments), but also he would be on hand to assist with what had by then become a ghastly daily routine. This involved administering rectal enemas as the only way to alleviate Danny’s constipation and his pain, and it needed at least two people, because understandably Danny fought to avoid the restraint and the gross intrusion.
Danny always forgave us afterwards, with a return of smiles and good cheer, happy with the relief that the enema usually brought. And he became very attached to Lee, often burying his head in Lee’s chest in order to receive soothing head massages, or stretching his legs over Lee’s lap as they sat together on a sofa.
We devised a traffic-lights system. Whenever I was on my own with Danny, Lee agreed to have his phone on at all times of the day and night. If I texted ‘Green’, it meant all was well. If I texted ‘Yellow’ it meant ‘we might need you to get in the car and come and help us any minute now’. ‘Red’ meant ‘whatever you’re doing, stop it now and get here ASAP’. He lived fifteen minutes away, and so I knew – and Nick knew – that however bad things were, help would soon be at hand.
As if all this wasn’t lucky enough, Lee gave us two more gifts.
He decided I needed a partner, and found one for me. I could see no hope of ever meeting someone who would find anything attractive about a depleted, autism- and GI-dysfunction-obsessed fifty-year-old woman. A woman whose life revolved around a delightful but chronically unwell and sometimes-violent young man. A woman whose nights were usually disrupted, and who on her nights off was usually exhausted.
Lee decided to take matters into his own hands. He set up a Guardian Soulmates profile for me,* gave me an alias, wrote the blurb about me and selected a photo (for only interested parties to see). When I had one week left of the month’s trial, and had done nothing, followed up no one, Lee came round one evening, forced me to choose five potential dates, and suggested wording which I was persuaded to email to all five. I was sceptical but helpless in the face of his concern and his determination. He would later explain to Nick and Amanda that he bullied me into it.
Of the five we picked out, there was one who seemed way out of my league but who Lee had already decided was my best bet. It was not just this man’s physical appearance – though that was nice; it was the things he had written in his profile and the way he expressed himself. It seemed he was warm and kind and enthusiastic and creative. He was looking for someone who would share weekends with him and his teenage sons.
‘Well that’s not going to work for a start,’ I protested. ‘Danny and I won’t be able to share weekends with two teenage boys.’
‘Never mind, it’s just a bit of fun.’
‘But he lives in Enfield. That’s quite far.’ It was on the very edge of the ten-mile radius that Lee felt was the maximum realistic range.
‘Just send him an email, and then ring him.’
*
Sometime in the late spring of 2009 you could have found me sitting in a gastropub in East Finchley, feeling fed up. I was exhausted after a gruelling night with Danny, who had been in pain from 4 a.m. I resented wasting my time on this venture, and sent a grumpy text to Lee.
My date had texted me to say he was running late. Yeah yeah. But something in the final ‘don’t go away!’ made me smile. Still grumpy and bored, I nevertheless sat and waited.
And then at long last, in he walked.
Within weeks, I was telling people excitedly about Adrian – his warmth, his energy, his originality. Nor did he appear to be disconcerted by any of my backstory, and I was thoroughly bemused.
He met Danny, and although Danny didn’t immediately warm to him, he didn’t push him away either.
There is one night that stands out in my memory as pivotal. Adrian had emerged from the bedroom dressed and with shoes on at 3 a.m., passing me on the landing by Danny’s door where I was sitting, waiting for the painkillers to calm him down.
‘Are you leaving?’ I asked, numbly assuming that this was one 3 a.m. disruption too many.
‘No of course not,’ he laughed. ‘I’m going downstairs to make you a cup of tea.’
In early September, I met Adrian’s two sons, Jamie and Josh – where else but at the Emirates? A friendly football match seemed as good a place as any for a first meeting. Minimum conversation, mutual entertainment, but enough scope for checking each other out.
The moment I saw Jamie and Josh standing with their dad at Arsenal Underground station, I recognised them as older versions of the sweet little boys I had seen in photos at Adrian’s home. It was as if I already knew them. I approached and they each gave me a hug, and I felt a cautious stirring of belief that this whole thing might, just, in some way or another, work.
*
Lee pulled off something my mother would later describe as a ‘miracle’ in finding Adrian, Jamie and Josh. And yet there is even more of Lee in the story of Danny and me that I want to explain.
It was Lee’s ability to see Danny in all his loveliness, and to know Danny’s strengths, that made him my soul brother. Lee took the time to discover in Danny the qualities that so many other people could not be bothered to find, or perhaps were too scared to uncover.
He did this in his singular way.
For example, while on holiday in the USA, Lee inexplicably decided to have an enema, ‘out of curiosity’. I didn’t ask for more details, but suffice it to say that the experience caused him to think anew how amazing and long-suffering Danny was, at that time when rectal enemas were part of his daily routine.
Then Lee trained to do voluntary work for the charity Kith & Kids.† During the training, an exercise required volunteers to try to communicate with one another without recourse to words or pictures. They could gesture, but they were not allowed to write or talk or draw. Lee was awestruck by the challenge; it was so very hard. And then he thought of the skill with which Danny had learned to convey his needs and express himself without these tools that most of us take for granted.
‘Danny, you’re a genius,’ he exclaimed when he next saw him.
Another time, Lee had a knee operation and lay awake overnight in his hospital bed thinking of Danny. The general anaesthetic still in Lee’s system was making it impossible for him to pass urine; his bladder muscles weren’t working properly, however much he sensed the need and willed some relief. He was reminded of the fact that Danny’s intestinal and bladder muscles suffer similar malfunction.
‘That man’s a giant, a fucking giant,’ he said to me when we talked about it a few days later. He added: ‘Where would we all be without him?’
Yes indeed, where? Lee was capturing the spirit of Danny’s family, and all the support staff and teachers who have fallen in love with Danny over his lifetime. People who see Danny’s ability to forgive, to move on, to greet the new moment without bitterness about the past. I can only wonder at this luminosity of spirit in him, be awed and admiring and proud and grateful.
There are other gems from Lee, too, texts which I savour.
‘Danny is better than any of them, you realise when you get to know him …’
And then:
‘But it takes time.’
This is true, I believe, of most autistic people and people with profound intellectual and communication disabilities. In a world where rapid-fire conversation or easy banter are keys to mutual entertainment, not many people trouble to take the time to see value in people who offer different qualities. I believe that in not doing so, they lose out on a potentially rich area of human connection, humour, warmth and discovery.
Another text from Lee contained Happy Birthday wishes ‘to the biggest man I know’.
And perhaps my favourite, as a PS in a text about the uniqueness of Danny’s different way of being:
‘You can stuff neurotypical up your arse.’
_______
* Soulmates was the Guardian’s online dating service. It closed in 2020 after fifteen years.
† Kith & Kids (www.kithandkids.org.uk) provides activities, opportunities, information and support for people with a learning disability or autism, their parents and siblings.
Part 5
THE BIG QUESTIONS
‘To wish simultaneously to celebrate a type of person and bring about their extinction is quite a moral juggling act.’
Simon Jarrett, Community Living
The rapid pace of change that had been a feature of previous years showed no sign of slowing down in the years that followed. We would gain, and lose, people we needed and loved. My hoped-for time for studying and writing would face setbacks. And we were heading for a crisis.
31
HELEN KEELER AND EUGENICS
Just as I was starting to study for my doctorate, along came a book entitled The Ethics of Autism, written by Deborah Barnbaum.1 When I saw the title, I wondered if I would have anything novel to say – maybe Barnbaum had covered all the ground already. Dipping in, I quickly realised it was scholarly and in many respects authoritative, steeped in academic references, citing the works of psychologists and philosophers. Should I just give up?
In fact, a closer read of her book had precisely the opposite effect. It was exactly what I needed to get going, because I reacted so strongly against it. It was a necessary springboard, giving me the impetus to plunge in at the deep end, no longer fearful or cowed.
I disagreed with her on several points. First, she based her concept of autism almost exclusively on the idea that autistic people do not possess theory of mind.2 This was despite the fact that successor theories had by then become every bit as, or more, persuasive,3 and that in any case she herself acknowledged later in the book that not all autistic people do lack theory of mind.4 She then argued that this notion of autism meant autistic people were not fully part of the ‘moral community’ – even though this concept is a deeply ambiguous and contested area within moral philosophy. And lastly, on the basis of her assertions, she proposed that prospective parents should aim to avoid having autistic children. This might be possible if, for example, technologies ever become available to identify, and then reject, so-called ‘at risk’ eggs, sperm, embryos or foetuses in relation to autism.
Here, then, was Barnbaum apparently flirting with eugenics – the removal from the human gene pool of certain characteristics that are deemed to be harmful or redundant. I am open to the idea that there may be specific areas of genetic exploration that are truly valuable, even though the history of the eugenics movement is entirely repulsive. There is at least a discussion to be had about the potential of eliminating or editing genes that contribute to Huntington’s or Tay-Sachs disease, or specific types of cancer.
But Barnbaum’s suggestion of eugenics with regard to autism, not just as a choice for parents but as an active moral obligation, was astonishing to me. Her assertion relied heavily on the work of another philosopher, Joel Feinberg, who had written about the rights of children to ‘an open future’.5 Barnbaum argued that autistic children were incapable of exercising this right, because, she said, the absence of theory of mind closed off important opportunities, such as mutual and reciprocal relationships. This was despite many criticisms not only of the ‘absent theory of mind’ idea, but also of Feinberg’s position.6 For whose future is more ‘open’ – that of a child born in poverty, in a war zone, in a totalitarian state, or that of an autistic or learning-disabled child born in a wealthy country with a relatively advanced welfare system? There are multiple situations in which people have no opportunity to choose the circumstances of their lives, and whose options for autonomy and liberty once they become adults are severely constrained. Does this oblige every potential parent in such situations to stop having children? No: in my opinion, it does not.
This may all seem rather abstract, a bit like the ‘angels on a pinhead’ theological arguments of the Middle Ages that heralded disenchantment with the church. And some suggest that genomic research will never be able to actualise this hypothetical situation because there are so many genes and environmental factors implicated in autism.
But these arguments are not mere indulgences and imaginings. Eugenics, I discovered in 2009, was already alive and kicking in the UK with regard to autism. And I had the privilege of meeting one of the stars of the story in this regard: Helen Keeler. I would devote a section of my doctoral thesis to the questions she raised.
*
Helen came to my attention because she wanted to tell the world about her experience when trying to become an egg donor, in order to help couples who were struggling to conceive. She had been rejected by four fertility clinics in England, because one of her children had Asperger syndrome. Presumably the clinics in question considered it too risky even to offer the choice to prospective parents. And this was despite the overall shortage of eggs. The message of this decision was that it is better to be childless than to have an autistic child, and that it is better that fewer children are born than that a new, autistic child is born. They also denied prospective parents the opportunity to reach their own, autonomous decision about any apparent risk involved. I do not know if the clinic professionals truly believed that non-existence is preferable to autistic existence, but regardless of any intention, the impact was the same.
The notion of ‘risk’ is fundamental here, and – I believe – we are often deeply inconsistent about the risks we take, and the calculations we unconsciously make about contrasting probabilities. When it comes to antenatal choice and reproductive technologies, we seem to live in a deeply risk-averse society. In the UK we are permitted to abort on the grounds of disability even into late pregnancy – when the foetus is capable of, but denied the opportunity for, independent life.
The Down syndrome (DS) population is at the forefront of this situation, because the condition can be detected antenatally. In the UK ninety percent of DS foetuses are aborted, and campaigners point out that terminations happen in pregnancies as far advanced as thirty-seven weeks. Iceland – not known as an illiberal country – has gone even further, such that only two or three children with DS are born each year. This is despite the fact that many DS people have fulfilling lives and achieve similar milestones to genetically typical people, are loved and celebrated equally, and inspire others every bit as much or perhaps more. While I do not discount the fact that there is an enormous range of experience within DS, I challenge the idea that decisions should be based only on the negative possibilities.*
It seems that when it comes to DS, the thinking of prospective parents – and of the medical profession that advises them – is dominated by worst-case scenarios.7 The greater-than-average chance of profound intellectual disability, early dementia and heart problems overrides everything else there is to know about a potential DS person and the life they might lead, the love they may experience, the joy and the reward.
How many parents would decide, or be actively steered, to terminate because their potential child might have a very serious car accident, or suffer at school from bullying and exam pressure (Danny was spared both of these), or acquire a drug habit (Danny is protected from access to all but prescribed drugs), and in adulthood suffer from deep job dissatisfaction or demoralising unemployment (Danny is under no pressure to earn a living) – the relatively commonly occurring problems faced by people without identifiable chromosomal differences? (Danny is also free from worry about climate change and he doesn’t dread another Trump presidency.)
So Helen Keeler raised important questions about antenatal selection and the use of reproductive technology, even at a time when it was becoming more widely acknowledged that there may be strengths and advantages in Asperger syndrome. Famous autistics such as Greta Thunberg, and UK celebrities such as Chris Packham and Christine McGuinness, have helped shift public consciousness further since then. But little has happened to affect dominant views with regard to the expendability of learning-disabled lives.
Until the 1970s, the default treatment of people with a learning disability was to separate them from their families from infancy and to deny them an education. Even recently it has been considered appropriate to let them die instead of resuscitating them in the event of a heart attack.8
Yet this raises all kinds of questions about our values in society, and it also requires us to address whether distinctions should be made with regard to our attitudes to autism. It suggests that an autistic person is tolerated and even welcomed and celebrated on condition that they have a talent or a skill. But woe betide the autistic person whose achievements are too subtle or personal to be more widely understood, even if they inspire love in others.
We do not place such burdens on neurotypical persons to justify themselves before birth. We do not say we might try to prevent their existence on our planet unless they can demonstrate that they have something useful or attractive to offer. We accept that NT people will vary; we know it can be random as to how people turn out. But when it comes to divergence from the ‘normal’, it seems we find it acceptable to draw the line, to stop placing equal value on their (potential) life.
All the while, the message is that some lives are in a sense valid and can be seen as fully human and with full ‘personhood’, but that other lives (including those with severe cognitive disabilities) are not valid – they are not true persons in the fullest sense. Some philosophers have articulated this quite clearly.9 They argue that people with profound cognitive disabilities do not have full personhood, and/or that their moral status is no different from that of animals.
