Fearfully and Wonderfully Made

A teacher friend has asked me to go and talk to his year 11 class about why I don’t see disability as valid grounds for abortion. I hope my lesson will dispel some myths about life with a disability. I will tell them that I did not know that my daughter would be disabled (she wasn’t born with her disability, but became disabled at about 9 weeks old) but that even if I could have known in advance about her limitations, I would not have opted for an abortion, and that all my experience in the 30 years since confirms that opinion.

There are three main arguments which are usually put forward in support of abortion on the grounds of disability. These are firstly that it’s not fair on the parents to have such a burden placed on them, one which will disrupt their lives for the rest of their lives, secondly that it’s not fair on the siblings to have a brother or sister who takes the lion’s share of the attention, and thirdly that it’s not fair to bring a child into the world who is going to experience suffering, and be unable to attain the accomplishments their peers achieve. I will take these three arguments and try to give them a different perspective, one which the media seldom presents.

Has raising a disabled child been burdensome to our family? Has it had a great impact on our lives? Well of course it changed many things. Meals become difficult when a child has severe physical difficulties in swallowing food. Family relationships become strained when one person has difficulty in communicating with the other family members. Excursions become complicated once a wheelchair always has to be taken into account. You can’t wake up one sunny morning in the school holidays and decide to jump on a train for a family outing, because rail travel with a wheelchair is supposed to be booked forty-eight hours in advance. As Dan Batten once wrote in Disability Now, “Woe betide the disabled person who decides on a whim to go out for the day.” Exhaustion is a permanent companion when a child who can’t turn over in bed needs attention eight or ten times a night. All these things I will be realistic about.

But the big question is, has this ruined our lives? There’s no doubt that a child’s disability dominates family life. You look back over the decades and see a very different journey from the one you thought you were going to travel when you set out. But so what? All kinds of things make your life different from the one you had planned. Sickness, accident and bereavement can strike at any time. Statistically, in a class of thirty children, between three and four will end up as carers of disabled people, either their own children or older relatives. Some will already be young carers.

When my daughter was born, despite already having a two year old, I was a very self-centred twenty-five year old. My observation throughout life tells me that selfish people are generally more unhappy than unselfish ones. Having to put someone else’s needs always before my own has made me a very different person, but crucially it has made me a much happier one. When life is tough you learn to notice and appreciate the small joys you might otherwise overlook. I am amazed at how resourceful that rather helpless twenty-five year old has become. I no longer sweat the small stuff! Has having a disabled child ruined my life? No, it has made it harder and far, far richer.

How about the siblings? Their life is going to be disrupted if a brother or sister with high dependency needs comes into the family. There’s no way to avoid this, although a wise parent will grab with both hands every offer of help with the disabled child in order to maximize opportunity for one-to-one time with their other children. My daughter Ellen is the middle one of three. It’s true that when she was growing up relations with her older sister were strained for a time, and the disrupted nights took their toll. Her other sister is younger by nine years, and was not yet three when Ellen went to boarding school during the week, coming home only at weekends and school holidays. That made the strain on her less than on her older sister. Nevertheless, the three of them have grown up very close and affectionate, and although they will agree that their lives were perhaps harder than those of their peers, they too will agree that their lives were also richer. They learned patience, unselfishness, and how to find those diamonds of joy in days of hardship, qualities that will stand them in good stead for the rest of their lives.

Interestingly, I note that among my friends who have disabled children, many if not most of the siblings have ended up working in the caring professions – doctors, nurses, social workers, speech and language therapists, children’s charity workers and church ministers. Far from turning their backs on people with disabilities or other difficulties in life, their experiences have made them want to spend their lives among such people. So their childhood can’t have been all bad.

The issue of the disabled child’s suffering is a serious one, and something that can’t be made light of. The question is, how many people’s suffering is so bad that it would have been better if they had never been born? Disability is a vast spectrum, and when I ask those school students who favour abortion for disability, “Where would you draw the line?” the most common answers are that if the child will have a serious learning disability or be unable to walk, abortion would be acceptable. Ellen fits both these criteria. Although she has a few pockets of real intelligence, and reasonably good ability to communicate, she experiences the frustrations of severe autism, and has never been able to walk or even stand or sit unsupported.

Undoubtedly she has experienced more suffering in her life than her sisters. She had her first major orthopaedic operation at about twenty months old, and although I am starting to lose count, I believe she’s had over thirty operations since. I have always stayed with her while she is anaesthetised (apart from one life-threatening operation where I couldn’t bring myself to do it and my husband stood in for me) and even now after all these years I still go and cry in the chapel once she disappears into the operating theatre and the doors close behind her. And when life becomes too unbearable, she often resorts to self-harm, a frantic attempt to replace the unmanageable emotional pain with a manageable physical one.

I was at first told that Ellen lacked the intelligence ever to learn any speech. So the day (at about the age of 7) when she shouted “Shut your face!” at her sister who was annoying her, I cried with joy because it was so completely appropriate in context. She clearly understood the situation and was able to articulate an apt response. She has developed a fascination for many things – music (her ability and understanding is amazing); mechanical things (especially hand dryers, the technical workings of which she can explain very clearly); transport, especially railways, and clocks which strike. These simple pleasures give her more joy than most of us get from a fortnight’s holiday in the sun!

She has also developed a terrific sense of humour. I remember when the speech therapist decided to work on “why” and “because” questions. She handed a doll’s vest to her assistant and asked, “Could you wear this?” “No,” said the assistant. “Why?” asked the therapist. “Because it’s too small,” the assistant replied. They went all round the table with the doll’s vest, asking each child the same question, and each child repeated the answer they’d heard. Until they reached Ellen. “Could you wear this, Ellen?” asked the therapist. “Yes,” said Ellen with a cheeky grin, and put it on her head!

Perhaps at this point it’s worth saying that I have no time for the kind of sentimental nonsense that says God needed a special person to raise a special child and that’s why He chose me, etc., etc. I don’t believe God is the author of disability, but I do believe He brings good out of everything, just as He did for Joseph in Egypt. So I would be lying if I said Ellen hadn’t suffered a great deal. But the flip side of this is that when the smallest achievement costs an unbelievable effort, yet she determinedly persists until she has mastered whatever it is, she experiences an ecstasy of delight that most of us would envy. Her lows are lower, but her highs are higher, than most people’s. Perhaps that’s a way of saying that she lives more fully and is more truly human than the rest of us.

But once I have put these three arguments to the class I will explain that there are two still more powerful reasons why I believe that disability is no reason for abortion. Firstly, abortion is the ultimate form of disability discrimination. We now, quite rightly, have equality laws that preclude shops, educational establishments, places of entertainment or of worship, modes of transport, etc., from discriminating against anybody on the grounds of disability. So why is it considered acceptable to eliminate people before birth on the grounds of their disability? You do not have to be a person of faith to understand this. It’s not a matter of religion, charity, or even simply of morality. It’s a matter of justice. In any case, what would such a policy achieve? It’s a fact that only about 17% of disabled people are born with their disabilities, so even if every single one of them had been aborted, 83% of disabled people would remain. Once we accept that the unborn are unacceptable as members of society if they don’t conform to our ideal of physical or intellectual perfection, it’s a chillingly small step towards the conclusion that burdensome disabled people ought to opt for euthanasia. I could at this point invoke examples of disabled high-achievers such as Dame Tanni Grey-Thompson, Professor Stephen Hawking or the amazingly talented musician, Stevie Wonder. But I won’t. Because every disabled person, even those whose herculean efforts result in achievements that seem very small to us, is of infinite worth.

And that brings me to my most important point. The Bible affirms that we are of incalculable worth because we are made in God’s own image. David expressed it in Psalm 139 by saying that we are “fearfully and wonderfully made”. The Bible knows of no exceptions to this, and nor do I. Every single one of us is the dearly-beloved of our Father in heaven. And just as my daughter’s disabilities haven’t made me, as her mother, enjoy her company and conversation any less, or love her any less than her sisters, nor does He value those of us who are blessed with a full set of working limbs and an absence of invisible disabilities more than those whose limitations appear greater. In fact, when you read the beatitudes, Jesus placed those with the greatest apparent disadvantages in life in the place of most importance in the Kingdom of God.

So I hope that my lesson will give these young people a different perspective on a subject they may never have considered very deeply. And I hope that, should any of them ever find themselves facing the terrible choice of whether to abort a foetus which they have been told has some kind of disability, they will choose life, and all the hardship and joy, tears and fulness of raising the fearful and wonderful little person God has given them.

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