They are the words you never want to hear. During your ultrasound, the sonographer or doctor looks up at you with a worried expression and says, “I think there may be something wrong”. Or as your child is finally born and you reach for your baby, you notice that the midwife looks worried. Faye says, By the time they told me, I knew something was wrong. When he looked at me and said he was so sorry, I just started crying. I couldn’t even tell (my husband on the phone) what was wrong. I couldn’t even think. I didn’t know what to do. When your baby is found to have an abnormality, everything changes.

Parents experience many feelings at such a time. There will be shock and bewilderment, and many feel guilty because they feel they are in some way responsible for what has happened. Some are angry because it seems so unfair. Others are ashamed that there is something wrong with their child, and do not want anyone to know. And so there may be silence, stigma and taboos that mean they can’t even talk about it. Inevitably, there is unbelievable sadness.

During one of my pregnancies I was told that our baby might develop some problems, and it was recommended that I have an abortion. My doctor knew me well enough not to spend a whole lot of time on it, but all of a sudden our lives seemed out of our control. At no time did my husband and I consider abortion, but boy, did we pray! We prayed that God would give us the strength to cope with whatever happened, but we also prayed for a healthy baby. All parents have expectations and hopes for their children and it is difficult when these are threatened. I have never been so aware of God’s sovereignty as during that pregnancy.

Birth defects are a major cause of suffering and death in young children, causing significant emotional and financial cost for the families involved. With the advent of widespread prenatal screening for congenital abnormalities, more parents than ever are finding themselves in the unbearable situation of hearing that there is something wrong with their child and there is no treatment available to fix it, not even in this modern day and age. As I found out, the medical recommendation for an unborn child who has something wrong can often be to terminate the pregnancy.

But do we have to? Are there options? How should Christians respond when they discover their child has a disability? In his experience, neonatologist John Wyatt has discovered that in an abnormal pregnancy there is nearly always an alternative better than abortion.[1] Another neonatologist, John Whitehall, in his experience has found two factors that compound the misery for patients who proceed to abortion. First, the abnormality in the baby often seems worse in the mind than to the eye; second, the burden of guilt and grief in the mind from the abortion may be heavier than bearing the disability in the child.

Whitehall recalls:

It is terrible to watch people concluding that a lesion in the unborn baby is too great to bear, then to witness them bonding with a corpse not nearly as disfigured as imagined and later to hear of repeated visits to the social workers. To one poor mother, the cleft lip turned out to be insignificant in the overall beauty of the now lifeless face. That baby was dressed and undressed almost daily (a little suit of blue, as I recall)… For months, the mother rang the hospital seeking reassurance.[2]

Grief can return to parents on birthdays and upon catching sight of a child living with the condition for which theirs was terminated.

How can we help those who find themselves confronted with a diagnosis of fetal abnormality? How can we help them avoid this aching regret?

I think there are two areas that need to be addressed: what are the biblical principles that help us think about disability, and what are the practical things that help? In this chapter, I will explore these questions and also look at our response as a society to the disabled who live among us.

Theology

How can it happen that an almighty and loving God allows an unborn baby to develop an abnormality? Is it an accident? Are the parents being punished? The Bible teaches us that God reigns in the universe and that his will is the final cause of all things. The chance that a pregnancy will end in miscarriage is 1 in 4; the chance of a baby being born with an abnormality of some kind is 1 in 30; and the chance of a baby being born with a serious physical or intellectual handicap is 1 in 50.[3] How can this be? Can God allow this to happen?

Yes, he can: “I form light and create darkness, I make well-being and create calamity, I am the Lord, who does all these things” (Isa 45:7). Furthermore, although we are still made in the image of God, this image has been corrupted through the Fall and now we all live in a broken world where bad things happen, people get sick, and ultimately, we all die. We groan along with the creation as we long for a new and liberated creation (Rom 8:22-23). Yet the Lord remains sovereign.

In our study of Psalm 139 (in chapter 3), we have seen how carefully God makes us. He doesn’t make mistakes. When Moses tried to get out of speaking to Pharaoh, and he told God he did not have the skill, God replied, “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?” (Exod 4:11). This is unexpected. You get the feeling that you may be looking at the issue of disability the wrong way.

Old Testament scholar Kirk Patston has had personal and professional experience of disability. He wrote an insightful passage about a Creator who allows the inexplicable to appear in this world:

When the Lord addressed Job he… spoke of his rights and powers as Creator, urging Job to think about the wild and wonderfully diverse world he created. The world includes creatures like ostriches, of whom the Lord says:

She lays her eggs on the ground

and lets them warm in the sand,

unmindful that a foot may crush them,

that some wild animal may trample them.

She treats her young harshly,

As if they were not hers;

She cares not that her labour was in vain,

For God did not endow her with wisdom

Or give her a share of good sense.

Yet when she spreads her feathers to run,

She laughs at horse and rider. (Job 39:14-18)

In this passage and the ones that surround it, God seems to be delighting in his own capacity to create diversity, even if it seems inefficient or puzzling from a human point of view. I find this liberating when I want to see disability as an unfair tragedy or to see my children or myself as victims in a random, cruel game. There is One who stands behind disability who knows what he is doing.[4]

He adds that when it comes to being wise, we are all disabled.

We can find this hard to accept because we are so conditioned by our society that it is difficult to truly believe disability is meant to be part of this world. We are used to having what we want, when we want it. No-one plans to have a disabled baby. How do we adjust to this unexpected news? How can we find the faith to hold on to our God?

Sarah Williams, who was told that her unborn child would probably die at birth, refused an abortion but then pondered with her husband how they could cope with the remainder of a difficult pregnancy and then watch their daughter die. Principles, however sound they might be, were simply not enough to give us the capacity to go on. They stopped short, leaving a great wide chasm of pain. She believes that God himself spoke to her in her distress: Here is a sick and dying child. Will you love it for me and care for it until it dies?[5] It is only through God’s grace that such sacrifice is possible.

It can help to go back to basics and consider the suffering Saviour hanging from a cross:

…a man of sorrows, and acquainted with grief…

he was pierced for our transgressions;

he was crushed for our iniquities;

upon him was the chastisement that brought us peace,

and with his wounds we are healed. (Isa 53:3, 5)

But remembering Jesus does not mean that we will not grieve our losses. Sometimes all we can say is, “I believe; help my unbelief!” (Mark 9:24).

In the Old Testament, deformed humans were not permitted to present sacrifices to God (Lev 21:17-23), and deformed animals were not to be sacrificed (Lev 22:18-25). Patston notes that, since the sacrificial system was concerned with sin and atonement, this practice set up an implicit connection between disability and sin.[6] Furthermore, when the prophets wished to condemn behaviour, they often used ‘disability rhetoric’, imagining the audience as blind and deaf (e.g. Isa 42:18-20, 43:8), thus further reinforcing the link between sin and disability.[7]

Of course, Jesus has replaced the sacrificial system with his own sinless death in our place. During his life on earth, he broke the Mosaic taboos regarding the treatment of the ‘other’, for example by touching lepers (Matt 8:3) and the dead (Matt 9:25). Furthermore, he denied the close link between sin and disability when he healed a man born blind (John 9:1-7) and, in fact, specifically included the disabled in his vision of the kingdom of God as a great banquet (Luke 14:21). It is interesting that he himself was depicted in prophecy as unattractive to men and carrying infirmity (Isa 53:2-4). God’s own divine power is made perfect in weakness (2 Cor 12:9).

This is the God who sacrificed himself on a cross to save us, who loved us and sent his Son as an atoning sacrifice for our sins. This is the God who loves us so much that he does not leave us as we are, but allows us to grow to maturity through suffering (Jas 1:2-4). How do you know you’ve had an encounter with God? Ask Jacob—you limp (Gen 32:24-31).

We have already discussed (in chapter 3) the doctrine of man made in the image of God (Gen 1:27). Man’s dignity is not based on his abilities or his characteristics, but is derived from the God in whose image he is made. In biblical thought, as each human life has unique dignity because of the divine image, so each life has an incalculable and incommensurable value. Each human being is an irreplaceable masterpiece of God’s creation. Each child is a gift of God to its parents. How can we say some are gifts while others should never be born? God does not make mistakes.

Furthermore, as the people of God, we are aware of a glorious future awaiting us after this life—so glorious that “the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God” (Rom 8:18-19). In the new earth, there will be no more suffering (Rev 21:4).

Stanley Hauerwas questions why it is that we try so hard in this life to avoid suffering altogether. While not suggesting that every form of pain and suffering should be viewed as good, he considers what sort of people we should be:

…so that certain forms of suffering are not denied but accepted as part and parcel of our existence as moral agents. In viewing our life narrowly as a matter of purposes and accomplishments, we may miss our actual need for suffering, even apparently purposeless or actively destructive suffering. The issue is not whether retarded children can serve a human good, but whether we should be the kind of people, the kind of parents and community, that can receive, even welcome, them into our midst in a manner that allows them to flourish.[8]

He further suggests that “We rightly try to avoid unnecessary suffering, but it also seems that we are never quite what we should be until we recognize the necessity and inevitability of suffering in our lives”.[9] We live in a society where individuality and self-possession are valued. But are humans really like that? Hauerwas argues that the reason the disabled are so profoundly threatening to us is because not only do they seem to accept they are not self-sufficient, but also “they expose our own fear of weakness and dependence on others”.[10] In fact, the disabled offer us an opportunity to remember how dependent we really are on the suffering God of the cross.[11]

But this teaching may be too hard for parents at the time of diagnosis.

Support during a time of crisis

When parents learn that their child has a problem or is at risk of developmental impairment, they are thrown into turmoil. This is a paralyzing experience. During the period of indecision, those in the supporting role need to acknowledge that it’s really, really hard.

Jonathan Morris, a maternal-fetal medicine specialist who has counselled many parents in this situation, stresses that during this crisis, parents need time—time to talk, time to make decisions. Time is needed to adjust to the anxiety that every parent feels when their child is found to have something wrong with them. They need to deal with disappointed dreams—dreams each of us has as we (rightly) hope for the wellbeing of our children. Anger is not uncommon. Grief and waves of sadness can wash over them. Where there is a definite diagnosis, doctors can outline all the available options, but if the diagnosis is indefinite then it will be harder.

Parents also need information about their child’s situation. Wide consultation to get a variety of views is important. It works best if they can talk to someone with whom they already have a relationship. Annette says, I spoke to my doctors, but I wanted to talk about it to others too. I found it very difficult when people didn’t refer to it—it was the biggest single decision I had to make and as such I wanted interest and concern, whatever it was. I didn’t want it just to be ignored.

Parents need to spend time gathering information before making decisions. Medical input regarding the options is important. Often those who make the initial diagnosis have a limited understanding of the precise lifelong implications of that diagnosis. Parents need accurate information about what is known about the problem, what treatment options are available, and what can be expected throughout the pregnancy and after the birth. Such information can only be obtained from a wide range of medical and paramedical experts.

It is also important to put parents in touch with people who know what’s really involved in having a child with the same diagnosis—people who have had a similarly affected child and so have firsthand knowledge. This can be done through linkage with individuals or by contacting a patient support group. Talking it through with people who had experience of what was involved were the most valuable discussions, remembers Will.

Patient support groups can function face-to-face or online. Different resources will be available according to which disease is the focus, and where parents live. Parents may need assistance to know which disease organization is relevant to their child’s diagnosis; rarer diseases are generally under the umbrella of a more common but related disease. As well as giving social and emotional support, these organizations usually have information regarding what practical and financial resources are available in the community.[12]

It can be extremely liberating to talk to someone who has been in the same place and understands what it is like. Because of the prejudice against the disabled, some people just can’t even picture what life would look like with a disabled child in the family, and often are reassured by an opportunity to talk to a parent who is familiar with the lifestyle. Those who have had the experience often express their surprise at the joys involved. There’s no way I would ever want to change her, said Senator Sue Boyce of her daughter, who has Down syndrome. She regrets the increase in abortions for children with this genetic variation: It is my view that the world is a much poorer place without people with Down syndrome.[13]

A 2011 publication reported on 284 interviews with people affected by Down syndrome, conducted in order to collect information to pass on to expectant parents. The people with Down syndrome encouraged parents to love their babies with Down syndrome, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share hopes and dreams similar to people without Down syndrome. Overall, the overwhelming majority of people with Down syndrome surveyed indicated they live happy and fulfilling lives.[14]

Even if life is hard for parents caring for a disabled child, it does not mean they regret the opportunity to have the experience. Susan Riggs’s son, Hugo, was born with Pelizaeus-Merzbacher disease, which left him severely physically and intellectually disabled. He was expected to die in early childhood. I believe these kids are sent to you for a reason, and a life’s a life whether it’s one trapped in a body like his or one that runs riot like his two sisters. Her husband, Ben, agrees: I don’t view Hugo as anything other than my first son and I’m very attached to him. Ben has spent many hours holding Hugo, preparing as best as he can for his son’s death.[15]

Research supports the benefits of making these links with those who have firsthand experience:

Surveys of women undergoing amniocentesis have shown that 62% say they would abort for sex-chromosome abnormalities, and 57% for blindness or paralysis of the legs. Yet only 20% of parents who have children with cystic fibrosis would consider abortion for CF. Clearly, having a personal relationship with an afflicted individual can summon up a host of nurturing instincts that do not come into play in a theoretical deliberation. It is interesting to note that these same parents of children with CF would be far more willing to abort for disorders they had no personal experience with. A similar pattern has been reported in parents of children with Down syndrome.[16]

Sometimes the parents need to be given the vocabulary to talk about what is happening. For example, what do you say to your other children? They will know something is wrong even if you say nothing. Be aware that they may feel responsible. Talk to them at their level of understanding, and listen to them to discover their questions. And again, how do you tell the mothers at school that your baby will die when it is born? How do you deal with all the well-wishers when you know your baby will not be normal? How do you cope with all the people who go quiet when they hear the news? Normally when a couple find they are having a baby, everyone is happy for them and congratulations pour in. When you have a disabled baby, no-one calls.

Support services are often attached to hospital units and may be able to provide support and counselling during this stage. It is very important that anyone involved with counselling does not put pressure on the couple either to keep or abort the baby. The parents are the ones who will have to live with this decision, and they have to know why they made the choice they did. Don and his partner found out that their baby had a problem that meant that she would die at birth. They were offered an abortion. It is undoubtedly the most difficult thing and decision I have ever made in my life, the reason being that I could not see any clear-cut right or wrong, and it was really only the two of us who could make the decision. Giving the parents time limits is a form of coercion that should be avoided. Even though many people aim to have an abortion before the point at which the baby’s birth and death needs to be recorded (often 20 weeks, though it depends on where you are), it is more important to make sure you make the right decision than try to meet any deadlines. This is an important decision and there is no rush. It’s a matter of life or death.

Choices

The options for the parents to consider are whether they will:

• abort the baby
• continue the pregnancy and prepare to take care of the baby
• look into palliative care if the baby is not expected to live long
• give the baby up for adoption.

If the parents decide to keep the baby then they will need ongoing physical, emotional and spiritual support. Caring for a disabled child is challenging. Nadia says, I kept asking myself why. I will never have an answer. But I feel that I learnt to rely on God more to get me through.[18]

You can pray for them, but don’t tell them that God would only let this happen to a strong Christian—it takes away their freedom to tell you how hard it is sometimes.

Abortion for fetal abnormality

Many couples make the decision to abort a baby after they find out that there is an abnormality. This suggests that regardless of whether the parents want a baby, they have decided they don’t want this baby.

Some liberal feminists reject the argument that antenatal screening expresses prejudice towards disability.[19] In particular, they argue that research into why women abort after a ‘positive’[20] prenatal diagnosis is complex, and that it is wrong to read desires and intent into the actions of individual women.[21] This is not to say there are no selfish or prejudiced women who abort simply because they do not like disabled people, or because they find it difficult to envisage fitting a disabled child into their lifestyle. However, these feminists argue that to deny the right to abortion because of fears of eugenics denies women the opportunity to abort because of inadequate governmental support systems.[22] Christians would not agree with this thinking, and even some feminists who are staunchly pro-choice oppose abortion for defect:

As Harvard University’s Ruth Hubbard has explained, “It is one thing to abort when we don’t want to be pregnant and quite another to want a baby, but to decide to abort this particular fetus we are carrying in hopes of coming up with a ‘better’ one next time”.[23]

We do well to hesitate in judging the motives of those who choose abortion. Aborting a previously desired child because of birth defects is rarely done easily or happily, and for many it is a difficult decision full of regret and pain.[24] However, as in all scenarios where abortion is considered, it is important that in this situation the parents are informed that they can choose to keep the baby.

Julie says, No-one actually said I had to end the pregnancy, but you know that’s what the experts think is best. Kay, on the other hand, was absolutely opposed to abortion and kept refusing to agree. It was so hard, everyone seemed to think I was crazy, and I had to keep saying it over and over. But once I was in the antenatal section, the doctors were much more supportive and they were much more encouraging about what would happen. Even the percentages changed. How many parents wish they could have kept their child, and how many didn’t realize it was a feasible option?

Alison Brookes discovered three factors that influence women’s decisions about whether to undertake prenatal diagnosis, as well as their use of the information made available by testing: the level of care a child will require, the level of care a woman feels confident to provide, and the level of care available for children with genetic conditions.[25]

In one way, the routine nature of antenatal testing can give parents a false sense of security. With all the tests offered, it is all too easy for prospective parents to forget that illness can befall a baby at any time during pregnancy and delivery, and after birth, and that the majority of birth defects are undetectable and unpreventable. It is well known that despite counselling, parents often take a negative prenatal screen test to mean there is nothing wrong with the child. Consequently, if the baby is found to have a problem late in pregnancy, or at birth, it may be all the more difficult for them to handle. Remember, there is no test that guarantees a healthy baby.

Deciding to terminate the pregnancy

There are different procedures in different places, and parents will need to ask questions, wherever they are, if they decide to end the pregnancy. They need to know the facts about the termination procedure itself, the inherent risks of having it (or not having it), their choices, the delivery method for the baby, time spent with the baby after delivery, legal requirements (postmortem, birth/death certificates, funeral arrangements), who can stay with them, and what they can expect afterwards.[26] They will need to know about the various options for collecting memories of the baby, and the emotional challenges that can be expected.[27]

Cases

I will look now at two hypothetical cases, in order to consider the options beyond abortion when a parent discovers in prenatal screening that their child has an abnormality. I will differentiate between lethal (incompatible with life) and non-lethal birth defects.

Case 1: A 31-year-old woman and her husband are told after her 18-week scan that the baby has anencephaly (congenital absence of the brain), a condition that is incompatible with life.

At first glance, it might appear that termination of pregnancy is the quickest and easiest way to help parents recover from the grief of finding that their child has a serious abnormality. However, research suggests this may not be the case. The decision to abort for genetic abnormality may have a more negative impact than abortion for non-medical reasons.[28] While abortion is sometimes presented as the only option when a fetus is diagnosed with a life-limiting condition, I would suggest that a perinatal hospice is a better option. In this scenario, the pregnancy is continued while plans are made for palliative care (comfort care) for the child at the time of birth. If one considers life in the context of eternity, 9 months instead of 90 years is of little significance. Continuing pregnancy is consistent with allowing life to be realized to its full—albeit only until birth in this case.

What will this look like?[29]

During the pregnancy

Sadly, I have had some experience supporting families in this situation. They need a lot of encouragement. From professionals they need accurate information and good communication. Specialist antenatal units are great if one is available. The family will need emotional support and the parents may want to record the pregnancy in some way, such as through a journal or through photographs.

It was weird, harrowing, to move through the months of the pregnancy knowing that the baby will die. I have heard of one couple who really enjoyed the pregnancy as the special time of their baby’s life—but we found it very challenging. At times, I wondered if abortion would have been a less protracted affair, even though we are glad we didn’t take that option.

At the time of delivery

The pregnancy is continued until labour begins and birth occurs normally, in a supportive and comfortable setting.[30] It is helpful to have detailed discussions in advance so that the time between the birth and death of the child is used well. In my experience, parents who pursue this option have had the consolation of knowing they did all they could for their child as long as they were able, and the subsequent funerals have been a powerful witness to the value of human life.

Case 2: A 42-year-old woman is told that it is highly possible her fourth child will be born with Down syndrome.

When a non-lethal birth defect is diagnosed, parents face the challenge of life with a disabled child.

First, as a mother who was advised on grounds of fetal abnormality to abort a daughter who was subsequently born healthy, my first response is to remember the false positive rate! Sometimes doctors can get it wrong.

Second, we know that some birth defects regarded as indications for abortion can be treated successfully in the womb or after birth. The confusion in our society about the value of unborn human life is highlighted by the fact that—hypothetically speaking—in one operating theatre a 22-week-old child can be treated for a birth defect (such as hypoplastic left heart) with intrauterine surgery (surgery in the womb), while in the next operating theatre a 22-week-old child can be aborted because of exactly the same problem. Some evidence suggests that surgery performed in the womb may give better results than surgery after birth,[31] however, what can be treated this way is limited because maternal outcomes are not as good.[32]

Third, we know that many families with a disabled child have indeed been able to manage, and they—and many disabled adults—would assert that these lives can be worthwhile and satisfying.

During the pregnancy

It can be helpful to spend time during the pregnancy understanding more about what will happen at and after the birth. If the child is expected to need medical care, it may be possible to meet those who will be involved beforehand. Will the hospital be able to provide the appropriate care, or will a transfer be necessary? When will the baby be able to come home? It’s difficult to prepare parents before the birth of any baby, but information will help. Non-judgemental support will be needed before and after the birth.

~

Education may be needed to help parents understand what the disability entails. For example, Down syndrome is often considered an indication for abortion, and without counselling, many parents would not be aware that these children can attend school and live semi-independent lives. They tend to have happy dispositions and I am sure they are much loved by their families. Sadly, it often happens that these families struggle to get the help they need in terms of community support, and Christians should be alert to the need to improve available services.

An interesting report from the United Kingdom indicates that the number of children born with Down syndrome rose by about 15% between 2000 and 2006. According to the Down Syndrome Association, more parents now feel that life and society have improved for the people affected. Religious or pro-life beliefs were a deciding factor for only about a third of parents surveyed. Others said they had been influenced by personal acquaintance with people who had Down syndrome.[33]

Some of the most passionate objections to the discarding of disabled unborn babies come from those who are disabled themselves. They find it highly offensive that society should judge their lives to be not worth living.[34]

It is interesting to consider why we think that disabled children suffer. Do we really think they suffer so much from being disabled that they would be better off dead? Do we think they will suffer living in a world where they don’t fit in? Or are we concerned that we will suffer because of them?

In fact, the disabled do not necessarily suffer the way we imagine we would suffer if we were them.[35] Those who are born disabled may be aware that they cannot do what others do, but for someone born blind, sight is not missed in the same way that we, who are so dependent on sight, would miss it. Harriet Johnson explains:

…disability shapes all we are. Those disabled later in life adapt. We take constraints that no-one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.[36]

Perhaps our concern for any suffering the disabled might experience would be better directed at changing things in us and our world, than at ensuring they are never born.

Kathy McReynolds, from the Christian Institute on Disability, suggests that if the disabled do suffer, it is partly due to the marginalization and discrimination they encounter. She encourages us to discover human dignity within the brokenness of disability by acknowledging the source of human dignity: God himself, who has stamped his image on us.[38]

Perhaps our attitude towards disability and abortion is too much influenced by the way the issue is framed in our world: the language of ‘personhood’, competing rights, a problem to be solved by individuals, the need to justify our decisions and find reasons for allowing the disabled to be born in spite of their disability. This is not how God views the situation. The Bible teaches us to be a people who practise hospitality and provide for the needs of others. Jesus said:

“Then the King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.’ Then the righteous will answer him, saying, ‘Lord, when did we see you hungry and feed you, or thirsty and give you drink? And when did we see you a stranger and welcome you, or naked and clothe you? And when did we see you sick or in prison and visit you?’ And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me’.” (Matt 25:34-40)

Who is more vulnerable than an unborn child?

We have been created for relationships, and God has given us Christian community. The Christian life is not intended to be one of isolation and self-containment. A problem that seems overwhelming for an individual can often be eased significantly by sharing it with a community of Christian brothers and sisters. I am encouraged when I hear of churches working together to help those caught in the dilemma of carrying an unwanted child, no matter why it is unwanted.

In this church, when a teenager has a baby that she cannot care for, the church baptizes the baby and gives him or her to an older couple in the church that has the time and wisdom to raise the child. That way, says the pastor, the couple can raise the teenage mother along with the baby. “That”, the pastor says, “is how we do it”.[39]

Our attitude to the disabled, or to any other ‘unwanted’ child, should be one of welcome; they give us an opportunity to express Christian hospitality. I am aware of many authors who assume that relieving suffering may necessitate the elimination of the sufferer.[40] How did we come to this?

As I write I am aware of how perverse my words will sound to some readers, but suffering is not the worst thing that can happen to you. In order to emulate our Lord Jesus, who gave himself for us, we will do what we can to ease the suffering of others, while also communicating the message, ‘It’s good that you are here’.

Longer-term support

If, as we have noted above, Jesus calls us to offer hospitality to the disabled, how can we support those who join our church communities? Because disability can last a lifetime, Christian communities will need to consciously and actively plan how to continue supporting disabled brothers and sisters; it is easy to grow lax when a need is ongoing. We are all members of the one body and we can be confident that we all have a part to play in the life of the church (1 Corinthians 12).

A list generated by those living with disability included the following practical tips that are worth considering if you want to help:

• Try to understand and provide a listening ear.
• Ask for prayer points and pray in an ongoing way.
• Give spiritual support (ministers have a key role in making contact with families, answering their questions as they seek to understand their position, and making sure the church does not forget their needs).
• Provide respite (offer to give the parents a break, or pay for a qualified carer if professional expertise is required).
• Provide home help (shopping, cooking and cleaning).
• Give financial support.
• Modify your church building so that no person with a disability is excluded (this may include building ramps, installing a hearing loop, providing special care for children so parents can attend a service).
• Reach out (invite the disabled to church and show your willingness to break down barriers, and make sure church functions are inclusive).
• Start a support group for those isolated by disability.
• Care for the siblings of the disabled.
• Take on an advocacy role to improve services for the disabled.[41]

Ruth and I have been Christians all of our married life and have found that our faith is the basis for coping with Alison day to day and for hoping for a life that is ultimately joyful and everlasting. We know that our resources are limited but that God’s are unlimited and we can always turn to him when life seems impossible. God doesn’t solve all of our problems and grant all our reasonable desires for Alison. She has not become ‘normal’ or shed her shocking behaviours. But there is help from our heavenly Father and there is eternal hope in the midst of all our joys, heartaches and suffering in the present life.[42]

~

Sometimes we feel dreadfully sad that we cannot have a conversation with William. This is something we truly long for. When we feel deep grief in our hearts that our son doesn’t relate to us in a way that we yearn for, we’re actually reminded of the grief that God feels for us, his children, to relate to him as we should. He, too, longs for us to talk to him.[43]

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I have spent the last two or three months feeling sad, heavy and dismayed by the idea that my child is going to struggle in life with his understanding and communication. But stopping to analyse the fears I have for him, I can see that I’m most afraid of other people’s reactions to him. I’m worried that he’ll be bullied, excluded, laughed at, tormented or just plain ignored. How do I know he will suffer these things? Because I know the tendency of my own heart, and I know my own sinful reactions to others who are different from me. At times, I have bullied, excluded, laughed at, tormented and just plain ignored people who were ‘imperfect’. And in doing so, I have shown my own imperfections, which are far more serious, far more deadly and far more vile than any physical or mental disability could ever be. The real human imperfection is the sinful, unloving heart that each one of us carries inside.[44]