‘In a hyper-competitive culture in which even baking a cake is a fight almost to the death… what does it mean to live a fulfilled life; to be fully human?’
This question was posed by actress and comedienne Sally Phillips in the lecture she gave for the Christian think tank Theos last week, entitled ‘Human Dignity, Different Lives and the Illusion of Choice’.
Sally had just been telling the audience about trying to teach her son Olly, who has Down Syndrome, how to crawl.
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.
All the other mothers were bemoaning the trials of their neuro-typical children, ‘Oh he’s into everything, keeps me up all night, such a pain, eats everything, won’t eat anything…’ Sally suddenly realised that far from being the great tragedy everyone had told her it was, having a son with Downs was actually a lot of fun. She was enjoying the experience of motherhood far more than they were.
Ask anyone what they want in life, and ‘to be happy’ will come high on the list. We all want, on balance, more pleasure than pain, more laughter than tears (unless they’re tears of laughter, of course). Yet at the same time, we don’t want it at the cost of our dignity, our privacy, our rationality.
Sally would be the first to admit that her life rarely looks dignified – ‘All my neighbours have seen me running down the street in my pants and “I am a crazy b*tch’” t-shirt’ – and yet she and her friends in the ‘Trisomy 21’ club see that their family members with Downs have something of far greater value: ‘He loves much, forgives quickly, laughs a lot. [He has] deep compassion and sensitivity to people.’
I love her positivity. If you were listing the characteristics you’d want in a friend, aren’t these exactly the sort of things you’d be looking for?
Yet when we see these traits in action, we shy away from the lack of inhibition, the lack of filter, the indignity.
Sally explained, ‘we lack the language to talk about these things to each other’. As a society, we value ‘the kind of rational data, analytical, scientific left hemisphere type of language’. As a result, we are ‘losing the ability to communicate with the right hemisphere, with art, with culture, with passion, with spirit.’
Those things aren’t productive, they can’t be measured and, for the most part, they don’t lend themselves to producing an income. In a cost-benefit analysis, fun tends to be subservient to function.
But in what Sally terms, ‘the topsy-turvy topology of the Kingdom of God’, our aptitudes and abilities are of far less importance than the simple fact of our existence. If you spend your life surrounded by able-bodied, neurotypical people, it is easy to slip into a value system built on ability. But step behind the waterfall for a moment and you begin to see a different reality:
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.
In fact, Sally admits, even Downs campaigners have often got this wrong. ‘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. … We can do jobs. We can get married.’ However, when she spoke recently to a group of parents and caregivers of people with profound and multiple learning disabilities (PMLD), she realised that again she was arguing for a life’s value to be measured by its contribution. Those parents and caregivers argued, ‘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.’
So back to dignity. Sally’s life, at least since Olly’s birth, has by most people’s standards, including her own, lacked dignity. It is undignified to have to teach your child to crawl by swinging him along in a towel. It is undignified to let it be known that you have needs and to accept the help of friends and strangers. And yet, it is extremely dignified to give help.
[After Olly was born,] 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. … My friend Di… stayed up all night trying to feed Olly 30mg of expressed milk. Harry Enfield, 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… which totally transformed feeding Olly. And when I went to pay for it 6 months later he had covered the bill.
All these people’s lives were enhanced by the fact that they were able to support a friend in need.
And Olly himself gives dignity to others by seeing friends where most of us would see only strangers or, worse, service providers. Because of him, Sally and her family are on hugging terms with their postman, and first name terms with ‘lots and lots’ of policemen. Olly loves without boundaries, just like Jesus.
This upside-down way of seeing the world is perfectly encapsulated by the cross. ‘The moment of the crucifixion… is the highest and the lowest moment for humanity at the same time. It is a descent and an ascent. The descent to freedom.’ The moment when Almighty God was least dignified was the moment at which he showed that humility is the path to glory, and at which he won for humanity the right to be accepted, not because of who we are and what we are able to do, but because of who he is and what he has done, once and for all.
In conclusion, Sally said,
I 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.
You can listen to the full lecture, and read the transcript, on the Theos website.