I know where I’m going…

I wrote this for Through the Roof (www.throughtheroof.org) and it is reproduced here by kind permission.

John’s narrative of the Easter story differs from that of the other three Gospel writers in that it is a much more intimate portrayal, seen less from the standpoint of an observer, and more through the eyes of Jesus himself. John, as Jesus’ closest earthly friend, had ample opportunity to observe and listen to Jesus and to get a feel for how He Himself saw events. In particular, he records far more than the other writers of Jesus’ own words in the period leading up to His arrest.

John records how, at the last supper, Jesus took a towel and performed the function usually reserved for the lowest servant in the house – washing the feet of everyone present at the meal. And he prefixes the story with this interesting observation: “Jesus knew that the Father had put all things under his power, and that he had come from God and was returning to God.” The security that Jesus had in facing the cross came from knowing what authority He had, whose He was and where He was going.

John’s Gospel makes three references to a character who is overlooked by Jesus’ other biographers. His name is Nicodemus, and we first encounter him in chapter three. Nicodemus, a Pharisee and member of the Jewish ruling council, is fascinated by what he has heard of Jesus and wants to meet Him for himself. But, wary of being seen to associate with him, he cautiously visits him by night. “Rabbi,” he says, “we know that you are a teacher who has come from God. For no one could perform the signs you are doing if God were not with him.” – an admission which, at present, he lacks the courage to make in broad daylight or in earshot of the other Pharisees.

Jesus makes Nicodemus welcome, and has a serious conversation with him about the need to be born again, born of the Spirit, in order to be included in God’s kingdom. He gently teases him in a way people only do with someone they like: “You are Israel’s teacher, and do you not understand these things?” Nicodemus is forced to face the reality that, unlike Jesus, he does not yet know what authority he has, to whom he belongs, or where his destiny lies.

Nicodemus’ encounter with Jesus has a lasting impact on him. He not only retains his confidence in Jesus’ divine origin, but he begins to gain a boldness in defending Jesus to the religious leaders. When they denounce His teaching and berate the temple guards for not arresting Him in chapter 7 of John, Nicodemus risks (and receives) a rebuke by venturing to ask, ““Does our law condemn a man without first hearing him to find out what he has been doing?”

The final time we meet Nicodemus, he has flung caution to the winds. Jesus has been crucified, has died, and His body is about to be taken down from the cross for disposal. The normal fate of crucified remains is to be flung out into the valley of Hinnom, the place where the rubbish is burned. Nicodemus and Joseph of Arimathea boldly go to Pilate and demand the right to take care of Jesus’ body. Permission is granted, and in broad daylight, in front of all the Jewish and Roman officials who have been present to witness the crucifixion, they tenderly remove the body of Jesus, wrap it in strips of linen and Nicodemus applies seventy-five pounds of spices which he has brought with him for the purpose. It has been estimated that such a quantity of spices would have cost the equivalent of about £110,000 in today’s money.

Nicodemus is making a very bold and very public statement about his estimation of Jesus’ worth. What a journey this man has come from the timidity that had him scurrying furtively to Jesus at night. Somewhere along the way he has learned what authority he has, whose he is, and where his final destiny lies. This has not come through any intellectual process of reasoning, but simply through keeping company with Jesus, feeling the warmth of His appreciation and acceptance, and realising his worth in God’s eyes.

And what about us? We all arrive at adulthood hampered by things that make us insecure and uncertain of our identity, whether that is the result of a physical or learning disability we’ve grown up with, abuse or neglect in childhood, being the victim of school bullies, or even just the self-doubt and longing for acceptance that are part of the normal experience of adolescence.

From there we have a choice. We can either go through life hamstrung by these limitations that we or others have placed on us. Or, like Nicodemus, we can associate freely and regularly with Jesus, observing His confidence and security that come from knowing what the Father has given Him, His total acceptance and belonging to the Father, and His ultimate destiny in taking the full place the Father has reserved for Him.

So, this Easter, let’s not continue to dwell on the things that hold us back or make us feel inadequate. Instead, let’s be confident in our authority (for Jesus said, “All authority has been given to me… go in My name”), in whose we are (for Jesus said, “You did not choose Me but I chose you… I no longer call you servants… instead I have called you friends”) and where we are going, that our destiny is inextricably bound up with that of Jesus (for Jesus said, “I go to prepare a place for you, that where I am you may be also”). Armed with these three confidences we can face with complete trust in God anything that lies ahead, knowing as Nicodemus eventually did, that our allegiance to Jesus matters more than anything, and is worth any sacrifice of reputation or wealth.

As C.T. Studd said, when he gave up a glittering international cricket career and an inherited fortune to take the Gospel to parts of the world where Jesus was unknown, “If Jesus Christ be God and died for me, then no sacrifice is too great for me to make for Him.”

Update on my petition

Support is growing!
We now have well over 400 signatures on this petition. There is much ignorance about learning disability, but disabled young people have exactly the same right to life as their non-disabled peers. I remember a poster campaign run by Mencap when I was in my teens, with the slogan “We may not think as quickly but we feel as deeply.” Please will you help me to share this campaign and encourage your friends to sign too? We owe it to some of the most vulnerable members of our society to defend their interests. Whether or not you’re religious, I’m sure most of us can endorse these sentiments from the Bible: Speak out in order to judge with righteousness and to defend the needy and the poor.

http://www.change.org/en-GB/petitions/health-secretary-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives

There’s a word for it

I wrote this for Through the Roof (www.throughtheroof.org) and it is reproduced here by kind permission.

At my church this year we’re studying the Gospel of John. Taking a year over it means we have the opportunity to explore the book in some depth, and I am enjoying spending a couple of weeks over a chapter.

Matthew, Mark and Luke told the story of Jesus. They filled their Gospels with details of His circumstances, the stories He told and the miracles He performed. They presented Him and let the facts speak for themselves, so that people could draw their own conclusions about His divinity. Matthew, in his eagerness to present a clear picture of Jesus as the Messiah – The One who is promised – packs in as many stories as he can in as few words as possible, often giving only the sketchiest outline of an incident, or even perhaps conflating two episodes into one.

John, by contrast, is less interested in presenting a multitude of facts than in interpreting Jesus to us. He comments a good deal more on the narrative, and he offers us the sayings of Jesus at considerable length, especially in chapters 14 – 17. And in the opening of his Gospel, He is concerned to present God as the creator and Jesus as the re-creator.

John’s Gospel begins, as we all know, with “In the beginning was the Word.” I have been thinking about some of what John had in mind by calling Jesus “the Word”. Just as “in the beginning” God spoke “let there be…” and the physical world was created, in the beginning of His new creation God spoke a Word which would recreate all that had been damaged in the Fall when humans rebelled against God.

Jesus, He tells us, is the Word who is from the beginning, the Word who is with God and indeed is God. Or in other words, Jesus represents what God most longs to say to us. And if we have ears to hear, each of us will hear that Word spoken to us. We will not all hear the same thing, for as at the Day of Pentecost, each of us hears the Word in his or her own language.

The prisoner hears, “free”. Those imprisoned by circumstances or by the words and actions of others can still know the true freedom that Christ brings. The dead hears, “life”. Whether the spiritually dead who receive life as they open their ears and hearts to Jesus, or the literally dead who are promised resurrection bodies. The rejected person hears, “chosen”. The despised person hears, “valued”.

The blind person hears, “light”. That might happen literally, like the man in John 9 who was blind from birth until Jesus gave him the gift of sight. Or it might happen, as it did for Fanny Crosby who never saw in this life, but could still pen the words, “Visions of rapture burst on my sight.”

The deaf person hears, “song”. Again, there are examples where that has happened very literally in response to God’s healing touch; but other examples where a lack of physical hearing has led to a great sensitivity in hearing God.

The child hears, “come”. The hater hears, “forgiven”. The troubled person hears, “peace”. The fearful person hears, “hope”. The broken-hearted person hears, “joy”. The cynic hears, “truth”. The betrayed person hears, “faithful”. The person who believes herself ugly hears, “beautiful”. The weak person hears, “strong”. The poor person hears, “rich”.
The one who cannot walk hears, “leap, leap like a deer”! Some may do so here and now, like the man in Acts 3 who was healed and went walking, leaping and praising God. Others may not see that in this life. But, like the little girl who was repeatedly told to sit down, and eventually sat down grudgingly with the words “I’m sitting down on the outside, but I’m standing up on the inside!” many of my wheelchair-using friends have already heard a word from Jesus, an invitation to dance, and are dancing on the inside.

I would like to encourage you to take some time in stillness to read through the opening verses of John’s Gospel and in the silence ask God what is His word to you right now. And remember that whatever He says to you, it doesn’t come in the form of a disembodied word, but it is Jesus, who is the Word of God, who comes to you Himself.

Please consider signing and sharing my petition

I’ve started the petition “Health Secretary: Stop asking families of disabled young people to discuss Do Not Resuscitate Directives.” and need your help to get it off the ground.

 Will you take 30 seconds to sign it right now? Here’s the link:

http://www.change.org/en-GB/petitions/the-government-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives

 Here’s why it’s important:

 I have 2 daughters who are neurotypical – they are physically able and their intellectual function and social understanding are unimpaired. I also have a daughter who has multiple disabilities. She is a cheerful young woman with a great sense of humour, wonderful musical ability and everyone who works with her falls in love with her. She is a much loved and very valued member of our family. Because she lives in a residential care home, I attend an annual review to assess her progress and ascertain that her care plan remains appropriate. And every year I am asked (I’m told it’s a requirement of the local authority and the NHS) to discuss whether Do Not Resuscitate should be written on her medical notes. She is 30 years old, and although disabled, she is in very good health. She lacks the mental capacity to understand and take a decision about this matter herself. She has exactly the same sort of life expectancy as her non-disabled sisters. No one would ask them to consider refusing resuscitation. I find it offensive that society assumes that disabled young people have such poor quality of life that they should not be given proper care if they become ill. It is the ultimate disability discrimination, giving the message that if someone’s life is different and more limited than average, he or she is disposable. Please sign my petition to tell the government that disabled people’s lives are as valuable as non-disabled lives, and end this practice of requiring families to discuss Do Not Resuscitate directives.

 You can sign my petition by clicking here. http://www.change.org/en-GB/petitions/the-government-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives

 Thanks!

Of God and Gardening

Spring is on the way and I am starting to think about my garden again. This is still a steep learning curve. Until two years ago I had never gardened in my life, but suddenly I had a garden all of my own, and I wanted to make it both beautiful and productive.

The flowers I’ve grown have been lovely. The first year I planted some annuals – sweet peas, petunias and nicotiana – and some perennials – lilies, alstromeiria and polyanthus. Last year I grew snapdragons, which were colourful well into winter, and bright red salvias. Last autumn I planted violas and more polyanthus as well as some dianthus. They are coming on well, and I’m going to have a colourful display by the Spring.

I’ve had some spectacular successes – two summers and autumns in a row I’ve eaten home-grown runner beans three times a week. Last winter my onions (grown from seed) didn’t do much but I had a constant supply of parsnips and Brussels sprouts. This winter my onions (grown from sets) have been abundant, and the parsnips just keep coming, bigger than any I’ve ever seen in the shops, but my cauliflowers didn’t yield one edible plant. Encouraged by last year’s success with carrots, I planted twice as many and am still harvesting them. My tomato plants last year were spectacular, with tens of pounds of fruit. The sweetcorn I planted did ok, but I hadn’t realised it was going to take eight weeks for the seeds to start germinating. This year I will sow them much earlier and expect to get a bigger crop. I’ll forget the caulis and go back to growing Brussels sprouts.

Some of my runner beans became too large and stringy to eat, so I saved them for seed. This week I found them in the cupboard, and they set me thinking. Come February I shall get out my polytunnels and start sowing. I shall look at those bean seeds – too many for the available space – and begin to select the ones I want to plant.

And that’s what started me thinking. I’m not a determinist. I don’t believe we’re a collection of genes programmed to behave in ways beyond our conscious control. I’m not sure I’m totally an open theist either, although I’m part way there. Open theism suggests that the future is not predestined, or even foreknown by God, but that, since He gives us free will, He is open to us choosing any of a number of possibilities. A bit like me with my bean seeds. How well my beans crop next year will depend on which seeds I select. I’ll make the best choice I can based on how healthy the seeds appear, but the final crop will be somewhat different from what it would have been if I’d selected different seeds.

Perhaps determinism, predestination and open theism all forget that God is not subject to linear time. Richard Dawkins asserts that God cannot be omnipotent, because if He already foreknows what will happen, then He can’t change it. I think what all these theories forget is that God is eternal, and so is not trapped in linear time in the way that we are. He can both leave my choices totally open to my free will, and know what I will choose because even though to me that choice (and its consequences) remain in an unknown future, to God every moment of my life is eternally now.

So, just as with my runner beans, I can choose what I am going to sow. I can look at what grew in my past, good and bad, and select the seeds of my future. I can choose either to sow more of the same and allow my past to go on replicating itself in a kind of spiritual Groundhog Day where I can never escape the pain of my own bad choices and the trauma of what others have done to me. Or I can choose to select the good seeds – however small and insignificant they may seem by comparison, like a carrot seed compared to a runner bean seed – and propagate and nurture those things.

My future is not fixed and unalterable, neither by deterministic genes nor by a predestinationary God. God is not so threatened by my choices that He has to keep a tight rein of control on them. He promises to bless me with a future and a hope. I might sow a few bad seeds and take a few detours on the way there. But as soon as I decide to look at the blessings, rather than the traumas, in my past and sow from them into my future, I can map out for myself a future that radiates with promise and hope. It feels like a waste to throw some seeds into the bin. But if (like my cauliflowers ) they hold disappointment and unfruitfulness, it’s better to let them go and sow the things that will blossom and nourish me.

I have been betrayed, abused and let down. But I have also been blessed, nurtured and cherished. It’s up to me which of those I want to replicate into my future. I am choosing to consign some seeds to the bin and sow those things which will reap a harvest that can nourish me and those around me. God isn’t determining which I will do; He is leaving the future genuinely open to me, with real choices, not imaginary ones. It’s true that I don’t know what the future holds but I know the one who holds the future. But at the same time it’s also true that the future will be what I make it, and that the abundance and variety of the fruit I harvest in my life will depend on the seeds I choose to sow today.

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.