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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.

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There have been various reports recently about a new test for Down’s syndrome that could be offered to pregnant women by the NHS within a few months. Unlike the tests used at present (amniocentesis and chorionic villus sampling), the new techniques are non-invasive and low risk; they work by analysing DNA from the foetus in the mother’s blood. The company Sequenom has already introduced such tests in the United States. [See, for example, Mark Henderson’s report in The Times, 29 Oct 2011, p3]

In itself, there is nothing morally wrong with pre-natal diagnostic testing, and it can bring a number of benefits. It can help parents to come to terms with a child’s disabilities early on; to prepare (psychologically and practically) for the birth of their child; and in some cases it can alert parents and doctors to the medical support and intervention that might be needed after the birth, and even before it. So there can be good reasons for parents to choose to have different kinds of pre-natal tests.

But the reality is that in most cases (about 90%), a diagnosis of Down’s syndrome in pregnancy becomes not a means to support the unborn child but a reason to abort it. So anyone with a concern for the unborn child, and anyone aware of the various psychological and social pressures on parents to choose to abort their Down’s syndrome child, might feel justifiable unease and even alarm at the advent of this new test. It’s not to be anti-science or anti-progress; it’s to recognise that some scientific advances can bring more harm than good when they are used without moral discrimination.

The reality is that eugenic screening and termination has become an accepted and largely unquestioned part of the British moral landscape, ever since disability became one of the grounds for abortion. It’s one example of how a change in law doesn’t just reflect the mores of a culture, but it actually helps to reshape them. It is now socially acceptable in Britain to think and say that people with Down’s syndrome have no right to be born, and consequently no right to live, simply on the grounds of their disability. (Eugenics: ‘the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics’; Oxford Dictionaries.) The intention of the parents or of the medical establishment may not be strictly eugenic (there are many complicated reasons why parents make these choices); but the background assumptions of a culture which is at ease with selective abortion on the grounds of disability are surely eugenic, in that such a culture has already decided that a certain category of human beings does not have the same dignity or rights as others, and that their exclusion will not harm the common good.

Isn’t it strange that this unacknowledged acceptance of eugenics sits side by side with an increasing social abhorrence of any form of prejudice against disabled people. In the same month that this test was publicised in the British media, which will allow more efficient screening for Down’s syndrome and probably lead to further abortions, Ricky Gervais is vilified for using the word ‘mong’ as a term of abuse, because of its associations (via ‘mongoloid’) with people with Down’s syndrome. (See Joe Public’s Guardian blog here.)

In 2001 the Disability Rights Commission was brave enough to put into words the very obvious link between the disability clauses of the 1967 Abortion Act and public prejudice against disabled people (much to the annoyance of Polly Toynbee):

The Section [1(1)d] is offensive to many people; it reinforces negative stereotypes of disability and there is substantial support for the view that to permit terminations at any point during a pregnancy on the ground of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equally.

In common with a wide range of disability and other organisations, the DRC believes the context in which parents choose whether to have a child should be one in which disability and non-disability are valued equally.

Here are Betsy Hart’s thoughtful comments on the testing issue [people in the US prefer ‘Down syndrome’ to ‘Down’s syndrome’; see the explanation here]:

The vast majority of instances of Down syndrome occur in babies carried by women 35 and younger, but that age group has historically been less likely to get tested. Now a simple and accurate blood test for this condition can be safely and routinely administered to virtually anyone who wants it as long as a doctor authorizes it.

So for the math: If more than 90 percent of women who find out they are pregnant with a baby with Down syndrome abort, does this mean we might eventually have almost no babies born with Down syndrome? Will we have gotten rid of a supposedly “undesired” human condition by getting rid of the people themselves who carry it?

And what does that do to the rest of us? I am the first to admit that I’m not signed up on any “adopt a baby with Down syndrome” list. I also didn’t sign up on the “raising four children on my own” list. We never know what challenges life is going to present. Accordingly, what a false sense of security a “no Down syndrome” test result can give parents.

Sure, the new test is just a tool, after all. If used to prepare expectant parents for a baby with Down syndrome so they can learn about the condition before their little one enters the world, great. Maybe they can be assured that life expectancies and outcomes for children with Down syndrome are so much better now.

Early intervention for cognitive development and surgical and other treatments for physical impairments have fundamentally and positively changed the playing field for babies born with Down syndrome today.

But how many minds will change when they have this information? We live in a supposedly humane and tolerant age. I question that. Not when we apparently still have so little tolerance for humanity that might be a little different.

I don’t doubt (and I know from the experience of parents themselves) what a huge shock and a huge challenge it can be when parents discover that their unborn child might have a disability. That’s one reason why it’s so heartening to read various personal stories that have come into the media in the light of the publicity about these new tests; above all from parents who might not have been particularly pro-life, but have had a kind of conversion through learning to love and value their disabled children in ways they never imagined would have been possible at first. Bonnie Rochman reports:

For Amy Julia Becker, who has written a book about life with her daughter, Penny, who has Down syndrome, coming to terms with her daughter’s intellectual limitations has taken time. “I went to Princeton, I graduated Phi Beta Kappa, I have always been smart,” she says. “I didn’t realize how much I assumed I’d have a daughter just like me. Having Penny really challenged me to rethink what it means to be a whole and full human being.”

In her book, A Good and Perfect Gift, Becker transcribes a journal entry written soon after Penny was born: “Can she live a full life without without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”

But many expectant parents don’t feel that way. Up to 90% of women who know in advance of a Down syndrome diagnosis choose to end the pregnancy, according to the few studies that have tracked this. The new test is not being marketed only to women who would end a Down syndrome pregnancy, say advocates of testing. Mothers who plan to have the baby may also want to know ahead of time in order to prepare emotionally and medically; half of infants with Down syndrome, for example, are born with heart defects. “I don’t think it’s all search-and-destroy,” says Canick. “That is an awful way of looking at this.”

But parents of children with Down syndrome are skeptical of the intent of early screening. “There is a real disconnect between hospitals, administrators and OB/GYN doctors’ understanding of what has changed for children with Down syndrome over the years,” says Howard, whose daughter, Lydia, starts conversations with strangers and cracks jokes in her inclusive preschool. “There was encouragement to get screened with the understanding that I would terminate because that’s what most people do.”

It’s true that mothers who learn soon after delivery that their babies have Down syndrome describe being overwhelmed with sorrow and disbelief on what they’d presumed would a joyous day. Howard cried every day for nine months after Lydia was born. Perkins McLaughlin says it took her eight hours after her C-section to muster the nerve to go visit her daughter, Gracie, in the neonatal intensive care unit. “There are people out there who feel the test is great,” says Perkins McLaughlin. “In some ways, it is great. But it is scary too. Will more people terminate because it’s earlier in the pregnancy and why not just try again? I don’t know what I would have done if I had found out at 10 weeks.”

Gracie is now 3 1/2. In the two years since Perkins McLaughin, now 44, has served as a parent mentor for the Massachusetts Down Syndrome Congress, she’s told the dozen or so conflicted pregnant women who have contacted her that Gracie is bright: she started signing at six months and had accumulated 100 signs by age 2, prompting her grandmother to ask, Are you sure she has Down syndrome? She loves music, dancing and her older brother and sister. Perkins McLaughin tells them how Gracie has added perspective to her life, softening her Type-A edges. “She’s not going to do quantum physics, but I don’t do quantum physics,” says Perkins McLaughin. “Gracie has showed me in a profound way that I am not in control of everything. I have a bumper sticker that says, Grace Happens.”

I wonder if serious reflection on ‘disablist’ prejudices and disability rights in this country will eventually lead us to reconsider the inherently eugenic abortion laws we have at present.

For more information about Down’s syndrome, see the Down’s Syndrome Association website here.

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What do you think of these ten tips? They are entitled ‘How to work better’, but I think they make a great set of rules for life. If I could follow just one or two of them for just a few minutes each day, I would be a lot further down the road to self-enlightenment and general well-being.

It’s interesting where I found them. I went to Tate Modern this week to see the Gauguin exhibition, and I entered by the staff entrance round the back, because I was visiting with someone who uses a wheelchair, and this is the temporary entrance for disabled visitors. And these ten rules were displayed for the staff as they went to work each day, not on a scruffy sheet of A4 pinned to the door, but on a huge 5 foot poster stuck on the wall next to the lift. Impressive! And the staff were unfailingly courteous.

In case you can’t read the image, or want to paste them elsewhere, here they are in plain text:

HOW TO WORK BETTER

  1. Do one thing at a time
  2. Know the problem
  3. Learn to listen
  4. Learn to ask questions
  5. Distinguish sense from nonsense
  6. Accept change as inevitable
  7. Admit mistakes
  8. Say it simple
  9. Be calm
  10. Smile

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British attitudes to disability are so contradictory (following on from the last post).

On the one hand, things are getting better for those with disabilities in Britain. There is better access to buildings and public spaces, stronger legislation against discrimination, and more integration in ordinary sociaty generally of those who are disabled. And, of course (this gives me another excuse to refer to my groundbreaking post about traffic management), there are fewer pavement curbs – at least in Kensington and Chelsea.

Two examples caught my attention recently. There was an article in the Times on Tuesday (I can’t link to it because of the paywall!) about media preparations for the Paralympics. It points out how much interest there has been in the Paralympics over the last few years, and how people with disabilities are much more present in the mainstream media than they used to be, e.g. as presenters and not just as guests.

And last week I had a tour of a newly constructed hall of residence at Leeds Trinity University College. The facilities were really impressive. Not only were there rooms for wheelchair users and the physically disabled, but these rooms were integrated into the sets for able-bodied students.

So your own room has all the facilities you would expect (accessible bathroom, accessible wardrobe, etc.), as well as some wonderful features that I never would have anticipated, like two spyholes in the door – one at about 5 feet for those who are standing, and one at about 3 feet for those using wheelchairs. And the shared kitchen that you use with other students has an extra cooking hob and an extra sink, both designed so that they are at the right height for someone using a wheelchair, and – equally important – enough space for you to get your knees underneath them.

These are all positive signs about how British society is becoming more inclusive and more open to those who live with disability.

On the other hand, if you are an unborn child and you have a disability, you can be aborted simply for the fact that you have this disability.

Even the Disability Rights Commission (which merged into the Equality and Human Rights Commission in 2007), which you wouldn’t expect to comment on abortion law, recognised this contradiction. It wrote that the section of the Abortion Act concerned with disability:

is offensive to many people; it reinforces negative stereotypes of disability; and there is substantial support for the view that to permit terminations at any point during a pregnancy on the ground of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equally…the DRC believes the context in which parents choose whether to have a child should be one in which disability and non-disability are valued equally.

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There are other kinds of healing that take place in Lourdes (see earlier post here), not least the healing of the relationship between those who are sick or disabled and those who are in good health.

I’ve always thought that the greatest miracle in Lourdes is the fact that you can go into a bar in a wheelchair or on a stretcher and order a beer without getting any strange looks from the staff or the other customers.

In one sense, the sick and disabled are given special treatment: special care in the hotels and hospitals, special places in the religious services, etc. But the really impressive aspect of Lourdes is that in the ordinary cultural life of the town – shops, bars, restaurants, cinemas – there is absolutely no distinction made between the sick and the healthy. They are all, equally, part of the same society.

In many ways attitudes to sickness and disability are getting better in Britain. But there are all sorts of contradictions, and I think this needs another post…

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