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  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.