Sally Phillips, actress, comedienne and campaigner, at Theos’ annual lecture 2019 ‘Human Dignity, Different Lives & the Illusions of Choice’.
You can listen to the audio recording of Sally’s talk here.
TRANSCRIPT
Good evening everybody. My name is Sally Phillips and I have attended not one, not two, but three clown schools. First rule of clown school: Nobody talks about clown school. Second rule of clown school: The clown always says ‘yes’.
Yes, that’s led me into quite a few difficult situations in the past. The clown always says ‘yes’ because it is believed, and I believe this also to be true, that our ridiculous, naked, awful–lovely humanity is best revealed when we are really truly out of our depth and trying to style it out. That moment when we stand on the chair and we reach for the biscuit tin on a high shelf and miss and fall in the bin.
My name is Sally Phillips and tonight I shall be performing my one–woman Muppet Christmas Carol. Sorry, wrong night. I shall be speaking to you about…what does it say? Human dignity, Different Lives and the Illusion of Choice.
Olly stories
I’m going to begin this story at the very beginning, the beginning of the story that started the journey that has led us here, with the birth of my son Oliver who has Downs Syndrome. It was August 2004. It was the best of times and the worst of times. The moment of diagnosis 10 days after his birth, the doctor said I’m sorry and the midwife cried. We got Olly home and he wasn’t feeling very well, and my mother was weeping in the corner, going ‘We’ll get him there, somehow we’ll get him to walk.’ My brother James was incredibly kind, he said ‘don’t for goodness sake go on the internet.’ But my friends and family gathered round.
It felt like we were the tiniest country in the world inside the walls of our top floor flat in Swiss Cottage. My father only used to let people in who he said had a visa. My brothers played team tag coming in and out. My friend Jess turned up, as she has done in the middle of every single challenge in my life, with Oliver’s army on CD. She said, ‘Don’t worry about it, we lesbians know what it’s like to be an outsider. The lesbians will have his back.’ And she wasn’t lying, there is a platoon of lesbians ready to come and support Olly through every single challenge he will encounter and there’s no army I would rather have with me.
My friend Di, who again has been there, stayed up all night trying to feed Olly 30mg of express milk. Harry Enfield, who I had done a film with, who I barely knew honestly, turned up at the front door with a briefcase. Inside that was a hospital breast pump which he had rented himself from behind John Lewis on Oxford Street. And he said, ‘Oh I love Down Syndrome babies’ and turned up with this expresser and said ‘Oh you might need this,’ which totally transformed feeding Olly. And when I went to pay for it 6 months later he had covered the bill. So I was milked by Stavros. Kind of weird. I remember my husband, who was just in shock, stood by the kitchen sink, washing up for about three months. Another silver lining.
We all reacted as if it were a tragedy. The representative from our church who turned up sat wordlessly on the sofa while we served him sugary tea for his shock. The NHS who offer termination to birth backpedal the moment your child is born, it’s called the twice told tale, and say that he is just a normal baby and not needing assistance whatsoever. People ran up to me in the street and gave us a – has anyone seen that thing ‘Holland’? Don’t give that to people. It’s a thing where it says you are booked to go on holiday to Italy and you’ve waited your whole life to go to Italy but your plane is diverted to Holland and you’re gutted. But after a while in Holland, for some reason you can’t leave this thing, after a while in Holland you discover it’s got things that are appealing like, I don’t know, sex shops.
Really nobody said anything terribly positive, the feeling was this was really going to ruin our life. Apart from a Jewish couple in our NCT group. Vicky, who had a legendary milk supply and was able to feed her son from across the room, She said in our culture we call babies with Down Syndrome ‘Mitzvahs’. Mitzvah means a blessing.
It was the best of times and the worst of times. It was what theology calls a Kairos moment. Kairos means a crisis with hope. Kairos moments are completely democratic, they happen to everyone, rich and poor, black and white, disabled and able bodied. I think even our dog Teddy has had a Kairos moment after swallowing a pepperami wrapper necessitating thousands of pounds of vet’s treatments. He’s a changed dog. Not wiser. But he’s different, humbler.
A Kairos moment is a scene change in your life, when the lights go out. It feels like your life seems to collapse around you and really there’s nothing to do in those moments, you just have to sit there in the dark until the lights come back on again to illuminate an entirely different set for the next act of your life.
The lights came back on for me on the bus about nine months later. I was on the bus with some other mothers, I had Olly in a sling. I’d spent the morning trying to swing him around the flat in a hand towel trying to teach him how to crawl because you have to teach everything. We’d had a real laugh. Olly had been really killing himself laughing and so had I and it had been a hilarious disaster and lots of fun. And on the bus I heard these other mothers complaining, saying ‘Oh he’s into everything, keeps me up all night, such a pain, eats everything, won’t eat anything’. And I had this flash that I was enjoying this a whole lot more than they are. And that was the beginning of understanding what theologians call the topsy turvy topology of the Kingdom of God. I just think we are particularly bad at knowing what are advantages and what are disadvantages. And these Kairos moments can act as Rosetta Stones, to teach us to properly or to better understand what’s actually happening.
But it didn’t make any sense that I would think that my life was better because we all knew my life was much, much worse, was basically ruined. I was never going to be able to leave my home again or work again and I was going to have a terrible life of deprivation and miserableness. Because in a hyper–competitive culture in which even baking a cake is a fight almost to the death, I’m thinking of Bake Off, Olly of course falls well short of the mark. The absolute joy issues a challenge – what does it then mean to live a fulfilled life, to be fully human?
Stephen Unwin, playwright and academic, calls learning disability the last socially acceptable prejudice. Seems a bit punchy until you look at how difficult a place the UK is for people with Learning Disabilities. I’m just going to skid through the stats because I know that people don’t really take them in, but I’ll just give you a few examples.
Learning difficulty as policy crisis
People with disabilities are hit throughout life by unjust policies. We can begin – they don’t have the same right to life as everyone else. While the termination cut off for babies without a disability is 24 weeks, for those with disability including Downs Syndrome, cleft palate, hare lip, it is up to and including labour. It is my view that women carrying Down Syndrome pregnancies are encouraged to terminate by the machinery of screening, it’s called Pathway dependency. While abortion providers have successfully campaigned for and won increased care for women choosing termination, still no care pathway exists for women choosing to continue a Down Syndrome pregnancy, you’re basically left on your own.
An expensive new screen has been rolled out on the NHS at the cost of around £400 per woman. This is thought to be worth the money even though the advertising standards authority said that this test has been mis–sold. They’ve oversold the benefits, there is really only a very tiny benefit to the public. In a time of austerity the government has thought it is worthwhile to roll this out at the cost of £400 per woman. The result of rolling that test out is, in places where it is out already, we think the birth rate of Down Syndrome has gone down 30%. We knew this was going to happen, we think the manufacturers knew this was going to happen, the government knew this was going to happen, but they simply didn’t care. If we were screening for sexuality or race there would be an enormous outcry. But there has been absolutely nothing, really. It’s been barely covered in the papers.
Why does it matter if the Down Syndrome population is reduced? I think lots of reasons. Obviously for us it means fewer friends and potential wives for our children. It also means there is less incentive to invest in education and improved health care and job opportunities and the specific kind of support that our people need. I also think it is a sad indictment of society where the things that the people with Down Syndrome offer are not valued, can be thrown away so easily.
People with Down Syndrome are happy with their lives, they are being healthier, living longer, getting jobs, Emmy’s in Tommy’s case, or he was certainly nominated. All the studies show that families love their Down Syndrome member, people with Down Syndrome are happy with their lives. Siblings are happy and love their family member and the only different between people with siblings who are special needs than without is that those siblings are more likely to go into professions that benefit the rest of society – nurses, doctors, psychotherapists.
Yet two weeks ago Matt Hancock announced with glee that he envisages a future in which we will prenatally genome sequence every foetus to identify more and more and more differences. If Down Syndrome is the canary in the mine as it is often called, initially by Prof Tom Shakespeare in the 90s, who then in our world will be welcome?
Although nobody wants to be called eugenic, if individual decisions now are made within a system and in a context which is biased and overwhelmingly carries them towards certain outcomes on the discovery of difference, then the end result is the same as if you had coerced them in the first place.
Avoidable deaths
So that’s birth. At the end of life, there are, at current reckoning, around 3 avoidable deaths per day of people with learning difficulties within the NHS, from lack of funds, lack of education, lack of care.
People with a learning disability die on average 16 years younger than people without a learning disability. I won’t go into why, I can tell you afterwards if you’re interested. We’ve known about this for 20 years but the government has taken little action. In their report Death by Indifference Mencap alleged that the NHS was responsible for ‘institutional discrimination’.
3 examples close to me: Connor Sparrowhawk, a young man with a learning disability, died of an epileptic seizure while bathing unsupervised in an NHS hospital in 2013. A subsequent review found that there was a widespread failure to investigate and learn from his death at the Southern Health NHS Foundation Trust where he had been receiving care.
The inquest of Richard Handley, a young man who had Down’s syndrome found “gross [and] very significant failures” at almost every stage of his care. The coroner Peter Dean wrote that the multiple omissions of care created an extreme and tragic situation that led to a death from constipation. His abdomen was, one doctor noted, the size of that of a woman who was 40 weeks’ pregnant.
Most recently Oliver McGowan, 18, from Bristol, was being treated for a seizure at the city’s Southmead Hospital in 2016 when he was given olanzapine to sedate him, a drug to which he had a known intolerance for and which both he and his parents requested repeatedly he was not given.
The Learning Disabilities Mortality Review (LeDeR) programme was established in 2015 to learn from cases like these. When LeDeR released its second annual report in May 2018, 1311 deaths of people with a learning disability were reported between Nov 2016–2017 but with only 103 initial reviews. Less than 10% of this target.
Health inequalities for people with disabilities are scandalous and simply not a priority.
What happens in the middle of life?
Successive governments seem to have turned the welfare system upside down and just let go. Last November, the UN’s special rapporteur on extreme poverty and human rights, Professor Philip Alston, said the UK government had inflicted “great misery” on disabled people and other marginalized groups, with ministers in a state of “denial” about the impact of their policies.
The previous year, the UN committee on the rights of persons with disabilities told the UK government to make more than 80 improvements to the ways its laws and policies affect disabled people’s human rights.
And in 2016, the same committee said the UK government was guilty of “grave and systematic violations” of three key sections of the UN Convention on the Rights of Persons with Disabilities, most of them caused by ministers at the Department for Work and Pensions.
What about education, special education? It’s pretty bleak there too I’m afraid. Permanent exclusions have increased to 7,720 in 2016/2017, I don’t have more recent figures than that I’m afraid. Temporary exclusions have gone up to 381,865, pupils with SEN support at a rate of 6x higher than of those without.
All of this is happening in a culture in which media messages about people with disabilities are negative and stigmatizing. In the last month there was a Times headline about special needs. ‘Pupils lose out as £400,000 siphoned off into special needs.’ Which is obviously forgetting that people with special needs are pupils and that it benefits everybody. In a culture where costing the state as little as possible has become a moral value anyone dependent is stigmatised.
In her fantastic book ‘Crippled’ commentator Frances Ryan shows how from social care to the benefits system, politicians and media alike have made the case that Britain’s 12 million disabled people are a drain on the public purse. She tells the story of a paralyzed man forced to crawl down the stairs because the council wouldn’t provide accessible housing; a malnourished woman sleeping in her wheelchair; and a young girl with bipolar forced to turn to sex work to survive. Ryan charts how in recent years the public attitude towards disabled people has transformed from compassion to contempt: from society’s most vulnerable to benefit cheats. And nobody really cares.
I have a zoologist friend who loves frogs. She actually spent 6 months in the Amazon rainforest trying to work out, as far as we could tell, which are the world’s most deadly toads you can safely smoke. She loves frogs and she says how amphibians are doing is much more important than how the great charismatic animals are doing, lions and pandas and things. She says it’s impossible for herpetologists to get people’s attention. She says people are only interested in what she calls cute crack, like sloths and pandas, they want a big head to body ratio, big eyes and a lot of fur. We bond about how we just cannot get attention for the things that really matter. People really don’t care.
The truth is that we are the fifth richest society in the world and we can afford to support disabled adults and children and their families in decent living conditions, so why do we swallow this lie so readily? What if independence isn’t all that. I have an actor friend – unrelated, he plays a lot of paedophiles, he says the job of acting is making love for that person possible which I thought was just so amazing – anyway he said what do you want for Olly? I said ‘I dream he’ll have a wife, a house, a job and a dog, I dream he’ll be able to live independently.’ He said, ‘What and be like me, who’s alone in a beautiful house in Bloomsbury with wonderful art?’ But he’s very, very lonely. What if clown school was onto something? What if it is through our vulnerabilities and failures that we shine most brightly?
I’ll tell you a bit more about Olly. Olly doesn’t hold a grudge. He remembers everyone’s name and birthday. He loves much, delights in everyone’s achievements as if they were his own, he builds community around him wherever he goes, he treats everyone the same and breakdances when I buy ice–cream. Olly has taught me how to make people feel valued. Olly asks me every morning how I slept, every day when I get in how my day was. He remembers everybody’s birthday. He treats everyone the same. We are on hugging terms with our postman. We run at each other like old friends. His name’s Oliver, that’s how we got chatting.
What Down Syndrome is like
I asked my Team Trisomy 21, that’s another name for Down Syndrome, some of the reasons they love their family members. Here are some of the things they said:
–She values everyone equally.
–What you see is what you get.
–He loves much, forgives quickly, laughs a lot.
–She is always ready to wipe your slate clean.
–His sense of humour and his taste in music…
–His deep compassion and sensitivity to people
–Enthusiasm!
–Her positivity
–Unquestionably the comedy value of Ava’s honest reflections on life and her unfiltered questioning of those around her… she’s the funniest person I know… sometimes intentionally
–For me it’s Hazel’s uniqueness. She knows what she wants and she’s nobody’s fool.
–The joy she finds in everything she does
–His existence!
And my favourite – accompanied by a picture of a ten year old boy dressed as one of the sisters from Frozen – Ted lives in the now. This particular now, he was Ana.
I can see people’s brows furrow often when I tell them particulars of our lives.
Sometimes it feels like we are living everyone’s worst case scenario, we are living behind a waterfall, separated from people by rushing water and we’re only visible to each other wobbly and wet.
But they say that the disability club is one that nobody wants to join but once you do you realise all the best people in the world are in it with you. Our lives are harder as you’ve heard, but they are also indescribably richer. We have more joy. We have an abundantly varied life.
Simon Barnes wrote an article for Mencap, he’s a sports writer for the Times so he goes to all the finals. He said ‘People envy me my job, they envy me my beautiful wife, they envy me my pile in the country, but they should envy me my Eddie’, his son with Down Syndrome.
Olly has democratised my life. I lived quite a rarefied life, my father worked for British Airways, we lived abroad in an ex pat community. I went to boarding school, then I went to Oxford and then I went into comedy which is open to all walks of life, Oxford and Cambridge! And Olly has taken me through the back of the cupboard into Narnia, he’s given me access to a whole other world that I find a lot more interesting than Oxford and boarding school and the ambassadors reception.
We had some neighbours move in the bottom of our garden. They had twins, Olly wanted to befriend them. I did not want to befriend them, I don’t want to know my neighbours at all. No thanks, I have enough friends, life is hard enough! Small talk, very bad at small talk. Anyway, the Down Syndrome handbook says people with Down Syndrome can’t climb very well. Olly didn’t get that memo. He just went over and over. We put anti–slip paint on, we built the fence higher, we were considering barbed wire! I would come down in the morning at 6am and he would be sat in their garden in just his pants. It was so humiliating! It was awful, just going ‘I’m so sorry, so sorry’ but over time I came to understand that actually these people were very nice, very understanding, and now in the summer we put a ladder up over the fence and the kids come and go. Olly tears down barriers between me and my neighbours.
He’s hilarious. He finds it hard to stop eating. We used to call him the brownie fairy, he used to come down in the night and eat all the brownies. So we stopped making brownies. He then got really into ice–cream, he used to come down in the middle of the night and eat all the ice cream in the house. So we hid the ice cream. Now he’s hit puberty we’re calling him the Pornography fairy. But there’s a silver lining to that too! When he hit puberty he ran into my room and went ‘Mum look, a bush! I’ve got a bush!’ We went to Brighton pier with his brothers and we all won these cuddly toys with tufts and we call them bushes. But my other two boys are not worried about puberty. He has just taken away the shame there, it’s embarrassing but it makes you think why were we so ashamed of that anyway? I mean this happens to everyone. What is that social construct that we can’t talk about it?
He’s got a different logic. I asked him what he wanted to be when he grew up and he said ‘fat’. I said ‘no Olly, not fat! You want to be healthy!’ He said ‘I want to be fat because then I’ll have eaten a lot of birthday cake’. He loves birthday cake but he also means that then he’ll have had a long and happy life.
Olly has taught me a new kind of comedy. What’s a fisherman’s name? Dave. He’s taught me that your relationship with each other matters a lot more than whether the jokes are funny. There’s such a deep joy in this, the jokes that only he can tell to only us, his team. They build our community, our common language. They tear down barriers.
At one stage it would take me half an hour to get Olly’s shoes on him every morning. I don’t work out much but I did a lot of resistance training if you know what I mean. Olly and I have done some hardcore relating. It was the best of times, it was the worst of times. But the paradox is that we are closer for that. We’re soldered together. Our love bonds have been forged in the fire.
It’s humiliating being the parent of somebody with special needs. I have a social worker, who I need. We are on first name terms with lots and lots of policemen. All my neighbours have seen me running down the street in my pants and ‘I am a crazy bitch’ t–shirt that was given to me by a Danish fashion designer, a gift I only wear in bed.
That the value of this is so hard to explain to other people makes perfect sense to me, that this should be so precious, is partly because of clown school. And partly because of my faith. Clown school teaches that accepting your own ridiculousness is a sort of glorious freedom. My faith teaches me that when I am weak then I am strong. As St Therese of Lisieux said, the areas when I know I fail (I’m paraphrasing) and repent and ask for help, are paradoxically the areas where I am strongest.
We lack the language
Now I meant at this point to talk about mythos and logos because I want to say that we lack the language to talk about these things to each other. But unfortunately I just haven’t done the research. So you could maybe deal with that later Elizabeth! But it’s my understanding that logos is the kind of rational data, analytical, scientific left hemisphere type of language. And mythos is not that. It’s on the right side of your brain. And value of these experiences are better described with this right hemisphere, spiritual language. Elizabeth, you can talk about Ian McGilchrist.
The point is, this academic believes the brain prioritises the left type of language, we see that, that’s more compelling. I believe that our society has been going through a period of losing the ability to communicate with the right hemisphere, with art, with culture, with passion, with spirit. That’s partly to do with not having faith in the public arena. The dismissal of this has a catastrophic effect on public discourse. I’m going to come back to this at the end.
Others dismiss our testimony
We find in disability world that people totally dismiss our testimony. We tell them that our lives are good and they say that’s not true. They don’t believe us, they don’t hear us, they tell us that we’re lying to force women to have babies. This must be an adaptive coping strategy, false consciousness. People cannot imagine what we say is true. Or rather, if they do imagine the lives of people with disabilities they imagine them in a bad way. They don’t look at the evidence or hear the testimony. It feels like we are being gas lit by the government.
Why are people so resistant? There is fundamental, dominant idea that pain is to be avoided at all costs and therefore disability must be crap. We have a deeply rooted cultural belief that the point of our lives is what we are capable of doing.
You are what you can do
Life, we think, is about contribution. Our achievements, our jobs, having a partner or family. We are slaves to the cost benefit analysis in all things, because the prevailing political language of our age is Utilitarianism, another thing I know very little about.
Utilitarianism was a philosophy introduced by a strange man called Jeremy Bentham who loved measuring things, particularly consequences, and thought you could calculate happiness. As you may know, his desiccated body now sits down there at University College London, offering amusement and disgust to generations of students.
Bentham reckoned that you could make your moral decisions based on how many people would be made happy by the result. If 19 people were made happy by course of action A, and 18 by course of action B, then you should choose Action A. From where I’m standing you only have to look at Brexit and Trump to see the flaw in this argument.
The takeover by stealth of Utilitarian thinking means that we are now a people that thinks the idea of society having winners and losers is inevitable. We measure everything from the number of steps we take to the length of our sleep and how many seven year olds can spell the word ‘turnip’.
As a result, we are losing the ability to talk about the things that cannot be measured. And if the world is governed according to the edict “what gets measured gets done”, we may be neglecting some of the most important things about being human. Like love.
You’re probably thinking ‘I’m not a utilitarian’. Even if you’re not utilitarian, think of what you mean by justice. Usually you mean fairness, you get back what you put in. It is unjust not to be paid what you are worth. I’m just thinking of the BBC gender pay gap.
In a way, some forms of Christianity, certainly the ones that I have been involved in, contribute to this too. The Low Anglican tradition that I love deeply teaches a transactional salvation. We are distinguished from animals by virtue of consciousness, self–reflection, moral capacity, the act of repentance. I have literally no idea if that is right or wrong but it does appear to be a kind of cost–benefit, quid pro quo.
If the point of our lives is what we are capable of doing then the implication must be that a human life lacking in the capacity for purposive action will be worthless, pointless. Those who are involved in the lives of people with disabilities disagree. Our insider experience tells us differently
Down Syndrome community justifying children’s lives
In the Down Syndrome community we have been campaigning hard to say we are not so different from other people. We do the same things. We can achieve purposive action. Tommy can act Hamlet. We can do jobs. We can get married. Why should we always have to justify children’s lives because we are so similar to you? Loads and loads of parent testimony books, really the sheer number of them express this deep frustration that we are trying to get across this message.
However I was speaking a couple of weeks ago at a conference for parents and care givers to people with profound and multiple learning disabilities (PMLD) who our mode of advocating has slightly annoyed. And they say exactly the same things as us, but they cannot argue on purposive action. Just like you, we don’t want to be repeatedly asked in hospital if we want them resuscitated. We don’t want to have to justify our family member’s existence every time we meet a doctor. Don’t slap a Do Not Resuscitate Notice on the end of the bed without asking. We say PMLD lives matter. We want to tell you that. And you look at us as if we are insane, but we think that the criteria of whether or not we are humans should not be something someone other than us gets to debate.
They say that the lives of our loved ones are valuable in and of themselves. Life is valuable in and of itself. Its goodness is not dependent on what can be achieved within it. Just because you can’t see the value doesn’t mean it isn’t there. I think this is a profound challenge to all of us, inside and outside of the church.
So who is wrong here?
My feeling is that Olly has been a spiritual guide for me. He has given me freedom from societal standards that were completely bogus. Why should not people further along that capacity line, people with fewer obvious capacities, why should they not be further along that spiritual chain? What if the meaning of our lives is nothing to do with what we do at all, and it’s all to do with surrender and acceptance and being peaceful in relationship and love?
Our feeling from disability world is that pursuing pleasure and avoiding pain are not the routes to a deep, relational and meaningful life. We sense that people are looking for a black and white answer: Is this better or worse? Good or bad? Is it? Is it though? Our lived experience is moving us towards a both/and understanding.
I think that is best summed up in fact by the cross, by the emblem of the cross, and I wish it was more socially acceptable to talk about the cross because it really does explain where we find ourselves. The moment of the crucifixion, which is within the tradition of Christianity but I believe useful outside it, the highest and the lowest moment for humanity at the same time. It is a descent and an ascent. The descent to freedom. And as with most deep truths it is more useful to us as a symbol than it is as literal truth, as history. As history it is a story, as a symbol it is a key to understanding.
Jesus hangs between a good thief and a bad one, between life and death, between divinity and mortality, a feminine soul in a masculine body, saying ‘OK it’s complicated and simple. We can get through it. Let me lead you to the rock that is higher.’
It’s not glorifying suffering or “being unrealistic” to say that meaningful lives can coexist with challenge and suffering. But it’s at this point that the truly beautiful flows.
Concluding message
I wanted to say one more thing. Our lives may not make sense but another story in the gospels that has really touched me and gives a good answer to what Jesus thought of Utilitarianism is the moment when he went to Simon’s house. He was not welcomed, his feet were not washed. He sat down and a woman, we believe Mary Magdalene, came in with a very expensive alabaster jar of perfume ointment. She began to weep and she began to wash his feet with her tears and dry his feet with her hair. And she broke that alabaster jar of perfume, which is all she had in the world, very valuable, and she anointed him.
Judas who was standing there told Jesus off. Judas says ‘this is such a waste – we could have sold the perfume and used the money for the poor’. Jesus says something along the lines of, ‘don’t scold her. What she has done is beautiful. It is beautiful and it will always be remembered’.
And I suppose I just want to encourage you to develop in yourselves that other way of seeing that can recognize this great beauty and explain it to others. Because I really think this is a key to freedom from this small, stats–ridden world we are currently living in. Thanks.
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