Baroness Jane Campbell of Surbiton was on Desert Island Discs recently. You can listen here.
She was born with a degenerative condition and her parents were told she would not survive infancy. Now in her mid-fifties and a cross-bench peer, she’s spent her adult life campaigning for equality for disabled people and was one of the leading voices behind the Disability Discrimination Act of 1995.
There were some fascinating insights about living with a serious disability, and what it means for her as a person, and for society.
She was asked about the loss of privacy that comes through needing the help of a carer for everyday life. She said (I’m paraphrasing, and writing from memory) that privacy is not just about physical space, but much more about preserving your interior privacy – keeping that inner space you need for yourself, one that can never be taken from you, whatever is happening on the outside.
And then this got her speaking more generally about the experience of having a number of people over many years help her and care for her. It gives you an insight, she said, into what people are really like, much more than if you were on ‘equal’ terms with them in your physical abilities. You are ‘being cared for’, and someone is coming into your private space, but being in a position of ‘carer’ exposes not just you to them but also them to you in a way that wouldn’t normally happen in everyday society. You see the reality of the person they are through the way they treat you.
I’m reading into her comments a little more than she actually said, but I think it is justified. She was saying, in effect, that your lack of autonomy, which might seem to isolate you and put you at a distance from the autonomous development of relationships that usually takes place, in fact allows a degree of communion between persons, of vulnerability, insight and even intimacy, that wouldn’t be possible otherwise. You see more and share more because of the relationship of need and dependence. Autonomy isn’t the only way in which people can freely share their lives with each other and be brought into a profound relationship. Autonomy, in other words, doesn’t define you as a person.
Pope John Paul II touched on these questions in his Encyclical Evangelium Vitae:
[There is a] mentality which carries the concept of subjectivity to an extreme and even distorts it, and recognizes as a subject of rights only the person who enjoys full or at least incipient autonomy and who emerges from a state of total dependence on others. But how can we reconcile this approach with the exaltation of man as a being who is “not to be used”? The theory of human rights is based precisely on the affirmation that the human person, unlike animals and things, cannot be subjected to domination by others.
We must also mention the mentality which tends to equate personal dignity with the capacity for verbal and explicit, or at least perceptible, communication. It is clear that on the basis of these presuppositions there is no place in the world for anyone who, like the unborn or the dying, is a weak element in the social structure, or for anyone who appears completely at the mercy of others and radically dependent on them, and can only communicate through the silent language of a profound sharing of affection […].
At another level, the roots of the contradiction between the solemn affirmation of human rights and their tragic denial in practice lies in a notion of freedom which exalts the isolated individual in an absolute way, and gives no place to solidarity, to openness to others and service of them. [Para 19]
And in the following paragraph [20] he continues:
This view of freedom leads to a serious distortion of life in society. If the promotion of the self is understood in terms of absolute autonomy, people inevitably reach the point of rejecting one another. Everyone else is considered an enemy from whom one has to defend oneself.
Thus society becomes a mass of individuals placed side by side, but without any mutual bonds. Each one wishes to assert himself independently of the other and in fact intends to make his own interests prevail. Still, in the face of other people’s analogous interests, some kind of compromise must be found, if one wants a society in which the maximum possible freedom is guaranteed to each individual.
In this way, any reference to common values and to a truth absolutely binding on everyone is lost, and social life ventures on to the shifting sands of complete relativism. At that point, everything is negotiable, everything is open to bargaining: even the first of the fundamental rights, the right to life.
I’m not saying that Baroness Campbell would agree with all this – I’m just following my own train of thought from Desert Island Discs to Pope John Paul II.
Another lovely story that came across later in the programme was this: She said that as a child with a severe disability, nevertheless her parents loved her with an unconditional love, and never tired of telling her that she was beautiful; and this knowledge of their love and of her beauty has sustained her throughout her life and given her the courage and confidence to overcome the huge difficulties she has faced. I like the two sides of this, equally important but sometimes separated from each other: being loved by another – a subjective reality; and being beautiful – an objective or a transcendent reality. Your dignity, your worth, your goodness, your beauty: in the eyes of another (because they happen to be there), and in the eyes of God (because he made you to be who you are). For the common good, and for the rights of each individual, society needs both the subjective and the objective affirmations of human worth.
Bridges and Tangents 
I heard this twice over. It was brilliant.
She said it was a privilege for her to have people caring for her all her life. She turned it on its head, It gave her understanding of them. She saw her life and disability as a gift which she would not change. She liked to persuade people that there is another way to live and be Loved not inferior as carer and cared for each bringing gifts and privileges to each other.
A good education and sex had been denied her early on and she fought for her human rights, the same rights that other were entitled to, including a joyous education and the right to choose physical intimacy with her beloved.
Her musical choices were pretty cool too, Fairport Convention A Bird Thats Caged and Johnny Crucendo Choices and Rights.
The worst time in her life was not any of her own physical struggles, it was when her beloved died and she lost her rock. In her lowest health moment her husband told the ‘carers’ do not treat her as you assume, she is no victim, and he produced a photo of her getting awarded her doctorate.
But what I remember most of all she proclaimed that just because she could not dance it doesn’t mean that she isn’t dancing in her head!
Brilliant.
I’m sure autonomy is over-rated. Even being financially dependent on someone is frowned upon these days (Cherie Blair recently talked about stay-at-home mums as if they were irresponsible). As Pope John Paul II seems to be saying – what a lonely world it would be if we really were all autonomous.
“For the common good, and for the rights of each individual, society needs both the subjective and the objective affirmations of human worth.”
I heard part of this programme whilst driving. I was struck by Baroness Campbells’ powerful words and the meaning that I ascribed to them. I was reminded of the phrase “Man is not an island” and of how interdependent we are upon each other.
It was, I thought, appropriate and poignant that this broadcast came in the same week where the case was heard of the man who was asking judges for the right to ask Doctors to end his own life.
Baroness Jane Campbell is an inspiration and a very great lady. She has also been very influential in the euthanasia debate.
My comments below are not intended to be political but to raise issues about what kind of culture of care and independence we should support in this country – although you can’t ignore the political issues in a state-run system.
I have two friends with cerebral palsy who are both concerned about these issues with regard to their own personal autonomy and independence, as well with regard to as the more general moral principles. I agree with what’s been said about the limits to autonomy in a truly human society but it’s important to remember that for disabled people control over their lives is essential to their human dignity as well as their wellbeing and, in some cases, survival.
One of my friends is a pioneer of independent living. He is completely physically dependent on paid carers, whom he recruits, employs and directs. He has lived in his own home and has run his own life very successfully for twenty years and is now really very worried (having experienced a local authority reassessment of his funding this year and some harrassment from a neighbour) that he will, as he puts it, ‘end up in a home’. That would be for him a form of imprisonment.
My general view is that a just and compassionate society should expend our shared resources to ensure that the weakest members of that society continue to live with as much independence, dignity and respect as possible. What is happening to many disabled people as local authorities review their budgets is, sadly, a scandal. I also know a couple of people who provide peripatetic social care to disabled or mentally ill people in their own homes and what they have told me about current standards of care is truly terrifying. I have also witnessed neglect and downright cruelty and sadism in my previous care career. So, yes, one can see that there are some human benefits to limited autonomy but there are also instances where voiceless and vulnerable people are completely at the mercy of an underfunded system which lacks compassion.
My other friend, who is more able but still has mobility and personal assistance needs, raised issues (completely out of the blue) about eugenics, abortion and euthanasia precisely with regard to disability. He is a Big Atheist (who also carries a picture of an icon of Our Lady and Jesus in his wallet…I have no idea why!) and is very far to the (hard) Left on all economic and political issues. However, consideration of disability issues in the light of what seems to be the new orthodoxy of matters of life and death has given him pause on the social/moral agenda. And given him a resulting political confusion!
I have only ever met one disabled person who said (at a very young age) that they wished they had never been born. A recent article in the Guardian entitled ‘I wish my mother had aborted me’ by Lynn Beisner (who is not disabled but feels that her mother’s life was so miserable and unhappy that she would have been better without a child) shocked me: less because of the content of the article, although it’s hard to read, and more because of the cool, ‘rational’, ‘intellectual’ tone of most of the comments – which agreed with the author. If this is the majority view of some of the ‘chattering classes’ in this country, then I do worry about the future.
Apologies for the rambling comment – I’d be very interested to see what you and what your readers think.
Thanks for the very thoughtful comments Claire. It’s good to put the practical/political reality next to the slightly abstract thoughts of the encyclical. I suppose there are two ‘fights’ going on. One to help disabled people to have as much support and autonomy as possible; the other to help society – which is all of us – realise that someone is no less a person for being disabled, or for having less autonomy, etc. The personal stories, like those of your two friends, often say a lot more than the theory. That’s partly why I like the radio programme so much.