Defining normality by comparing a disabled person with someone in a similar situation is a questionable approach, says David Hewitt
“It was the fourth of July yesterday and Phillip wanted us to go up on the roof of the barn and watch the fireworks... So we all climbed the ladder, and he carried the girls up one at a time. Alice is four and Grace is already one and walking everywhere she can. She is always on the go. She is saying words like ‘dada’ and ‘mum’. It is a warm night outside. The stars are shining and the moon is a crescent in the sky above me.”
I want to say something about the idea of ‘normality’ and the way its use can deprive people of protection they would otherwise have enjoyed.
Where someone who lacks capacity is confined to a hospital or care home in their own best interests, they may be eligible for the deprivation of liberty safeguards (DoLS). These ensure that the case receives independent scrutiny, and they give the person concerned a right of legal challenge (see ‘Purpose alone can no longer determine if there is a deprivation of liberty’, Solicitors Journal 156/15, 17 April 2012).
As their name suggests, however, the DoLS only apply where a person’s confinement amounts to deprivation of liberty. The courts are taking an increasingly narrow view of what that means.
We have been told, for example, that a man with cerebral palsy and Down’s syndrome does not fit the bill, even though his life is controlled by a local authority, he lives in a care home, he can’t leave without an escort, and (because he eats his incontinence pads) he is often put in a one-piece ‘body suit’ and subjected to an intrusive ‘finger sweep’ of his mouth. The Court of Appeal said all this is ‘normal’ for someone like him (Cheshire West and Chester Council v P  EWCA Civ 1257).
Lord Justice Munby, indeed, said that, to decide whether someone is deprived of liberty, his circumstances “should be compared with those of someone of similar age and capabilities, affected by the same condition or suffering the same inherent mental and physical disabilities and limitations”. The aim, he said, “is to consider the kind of lives people like the person would normally expect to lead”.
To put it bluntly, you are judged according to your peers, against other people with a learning disability, for example, if you happen to have a learning disability. And if what is being done to you is pretty much what is done to them, there is no deprivation of liberty in either case.
But reasoning of that kind is surely deeply dubious. Focusing on the disabled individual, and on other people ‘like’ him, seems to lose sight of all objectivity; to abandon the idea that there are common standards – common liberties, we might say, or common protections – that are available to everyone.
For me, there is something questionable about the whole issue of ‘normality’. Things are often not at all what they seem.
Life seen from the outside
“I close my eyes and as Phillip takes Alice and I take Nancy’s hand and we walk out together into the sunshine, I can feel it – the sun – warm on my face. There is an old picnic table and bench out here. And Phillip and Nancy say that we can have barbecues out here and be a real family. I am really looking forward to having a family and doing things again. I have been cooped up for so long. There’s an old dresser out here, too, and on it is a cute little guinea pig in a cage... I show him to Alice and she starts to laugh and rub her nose in his soft fur.”
This and the first passage were written by the Jaycee Lee Dugard. She was the American girl who was kidnapped at the age of 11 and didn’t emerge for 18 years. The ‘Phillip’ she mentions is Phillip Garrido, who imprisoned Jaycee in his backyard for much of that time and regularly raped her. Jaycee bore him two children, the first when she was 14 years old. Last year, Garrido pleaded guilty to kidnapping Jaycee and sexually assaulting her, and he was sentenced to 431 years’ imprisonment. The ‘Nancy’ mentioned is Garrido’s wife. She was gaoled for helping him.
These passages are from Jaycee’s memoir of her captivity (A Stolen Life, Simon & Schuster, 2011). Of the long years spent in that miserable backyard, she says: “I grew used to all kinds of things” and then: “Only distance and time have revealed what life was like there and what life looks like from the outside.”
We should refuse to accept the notion that ‘normality’ can in some way dissolve the bonds of confinement; that what is ‘normal’ is not, and can never be, deprivation of liberty. That notion creates differential safeguards, it accords the sick and the vulnerable inferior protection and second-class liberty, and it fails to recognise that, as Jaycee Dugard tells us, life can look very different when seen from outside.