The King is in the house…. or not?

It’s been quite a while since my last post.  I haven’t given up on writing, nor have I abandoned my Wesley journey.  But all my available time has gone on writing my next book, which I hope to finish (at least the first draft) by the end of next month.  In the meantime, here is something I wrote for Through the Roof (www.throughtheroof.org) which is reproduced here by kind permission.

It was 1986.  My daughter was two and a half, but she looked more like a baby of 10-12 months – very tiny and not yet moving around or even sitting up.  She had started life at 2lbs 4 ½ ozs and had gone down to 1 lb 10 ozs before slowly clawing her way back to her birth weight over the next two months, and she was still chronically underweight.  At fifteen months old she had been diagnosed with cerebral palsy and an unknown degree of learning disability.  During the thirty months since her arrival I don’t think I’d ever had more than two consecutive hours’ sleep, and I was exhausted, scared and vulnerable.

And at that moment, a doctor pointed at my daughter and said to me, “You don’t have to be doing this, you know.  There are places these people can go.”  Even in my fragile state I was shocked and appalled.  The doctor had come to assess my daughter for disability benefits (Attendance and Mobility Allowance in those days) but after that remark I couldn’t get him out of the front door fast enough.

And here’s the problem we still have.  If you don’t know and love someone with a learning disability, or with profound and multiple disabilities, the message the world gives could be hard to resist. They are “these people”, a category, rather than unique individuals.  This is why we have a system that still sends young people with learning disabilities to Assessment and Treatment Units, sometimes hundreds of miles away from everyone they know and love.  Because “these people” are not like us, are they?  “They” don’t feel things the way we would feel them.  “These people” are not conscious of ill-treatment the way we would be, and they don’t miss happiness and love as we would.

This is how we have arrived at a situation where intellectually disabled people, most of whom don’t have life-shortening conditions, die on average 16 years younger than the rest of the population, because their healthcare needs are not taken seriously.  This is something of which, as a mother, I’m very aware, having batted my head against a brick wall for a long time in the effort to get appropriate medical treatment for my daughter, which I know very well that her non-disabled sisters would receive as a matter of course if they had her symptoms.

But if you know and love someone with a learning disability, you know they can’t be consigned to some homogenous category any more than, say, the freckled or the brown-eyed.  My daughter, now 33 years old, is a cheeky, humorous individual with a deep sense of justice, a fierce loyalty towards those she loves and an astonishing musical ability. She cannot be dismissed as one of “these people”.  As a MENCAP poster from the 1970s proclaimed, “We may not think as quickly, but we feel as deeply”.

Jesus never treated disabled people as a faceless, emotionless category.  Each one to Him was an exceptional individual commanding His full attention.  Study his interactions with the many disabled people to whom He ministered.  You will find He didn’t treat them all alike.  He tailored His approach to the unique needs of the unique individual before him.  He even told a story to demonstrate that without the presence of disabled people seated alongside everyone else at the table, His house is not full.  (Find it in Luke 14. 16-23)

Why did He say that?  I think the answer is found in Matthew 25. 31-46 and in Luke 9.48.  In the first of these passages Jesus lists all kinds of disadvantaged people – hungry, thirsty, estranged, unclothed, imprisoned.  And he says that how we treat them is how we are treating Him.  In Luke 9 He takes it a stage further – whoever welcomes even one little child in His name is welcoming not only Him but the One who sent Him, for the one who appears least among us is actually the one who is great.

So here is why, when people with physical and learning disabilities are absent from among us, the house is not full: because in excluding them, we are excluding Christ Himself.  He is the Head, the reigning King as described in Matthew 25, and yet He is not in the house.  When we hear scandalous stories of the appalling treatment of people with complex disabilities in Assessment and Treatment Units, the world has conditioned us to think, even subconsciously, that “these people” don’t feel or understand what is happening to them to the same degree that we would.  And yet Jesus affirms that what is being done to them is being done to Him.  It is felt as keenly as if He were the victim.

When we see churches that are oblivious to the number of people in their communities who have these complex or multiple disabilities, and who are making no attempt to reach out to them or include them, the King is not present in the house.  But how can we evangelise “these people”?  “They” wouldn’t understand the Gospel, would they?  Some of them are too restricted in their understanding to know what sin is, let alone to see their need of a Saviour.  And so we exclude “these people” and in so doing the house is not full, and the King is not in the house.

But the Gospel is still the power of God to salvation for everyone who believes.  The word translated “everyone who believes” is the Greek word pisteuonti.  It does not carry the sense we have come to ascribe to the word believe, of an intellectual assent to a set of propositions.  Rather it means to have confidence in and entrust oneself to something or someone.  And this is a matter not of the head but of the heart, and therefore it is as possible for someone who is severely intellectually challenged as it is for any of us.  I think of the lady who shares the same care home as my daughter.  She has no speech and communicates everything by a mixture of happy squeals, anguished screams and facial expression.  It is hard to tell how much she understands of anything beyond her daily routines.  And yet the peace and happiness she displays when she goes to church speaks volumes about both the welcome she receives there and the reality of her encounter with Christ.

So why are our churches not reaching out to the individual families and the care homes in our communities where precious individuals with severe intellectual disabilities live?  Why are we not training ourselves in ways of communicating with this audience?  Why are we not hammering on the doors of these dreadful Assessment and Treatment Units and offering chaplaincy services, off-site activities and a regular welcome in church to their residents?  Why are we not building up trustful relationships in which these individuals can tell us, or we can begin to discern, if they are suffering ill-treatment?  Is the King languishing outside His house, unnoticed by those within?

 

Pastoral care of families with disabled children

My last post was a fictionalised account of what life is like with a severely disabled child. But I don’t want to leave it on that note, as real as it is.  I would like to explain how my church got me through those years when my children all lived at home and I was juggling all their needs when one of them had complex multiple disabilities.

When my daughter was born, three months prematurely and fighting for her life, two things happened immediately.  One was that a lady in the church organised a 24 hour prayer chain, so that at every hour of every day and every night, someone in the church was praying for us.  We felt it.  We were borne along on the strength of those prayers, and of the God who answered them.  The second thing was that the amazing ladies of our church swung into action and arranged a meals rota, so that when I came home from the hospital each evening I didn’t have to cook.

Over time, other things began to happen too.  If I could have my time again I would probably do things differently.  But I didn’t know if my precious baby was going to live or not, and I wanted to spend as much time with her as I could.  Additionally, I wanted to breastfeed her.  This had never been done before with a 27-week baby at our local hospital and the doctors encouraged me, as they wanted to know if it was possible.  This meant I had to go in at least every morning and evening to feed her, and I had to express enough milk for the nurses to give her when I wasn’t there.

With hindsight, I would perhaps have gone in every other day and had alternate days to devote more time to my toddler, who definitely suffered from being passed from pillar to post.  But it’s easy to say that now, given that my baby survived and grew to adulthood.  If she hadn’t made it, I’m sure I would never have regretted the time I spent with her.  And as for the feeding, it turned out that because of the cerebral palsy she couldn’t suck from a bottle, and if I hadn’t breastfed her she might well have ended up permanently tube fed.

People from my church stepped up and offered to look after my toddler each morning – one lady had her 3 mornings a week for 3 months because she felt it was important for her to have consistency of care.  Other people babysat each evening so that once the toddler was in bed we could go back to the hospital.

As time went on and I became more exhausted, people from church would appear on my doorstep and whisk my laundry basket away and bring it back washed, dried and ironed.  And when finally my daughter came home, aged 3 months, with all the breathing and feeding problems described in my story, the same lady that had organised the 24 hour prayer now organised a rota so that I had people from church coming in every day and doing all the household chores, leaving me free just to look after my children.  After having the nurses look after my daughter for 3 months, I didn’t want help with her, I wanted to be able to do everything for her myself.  And so the ladies from church came in and cooked, cleaned, laundered, vacuumed, ironed and changed the beds, leaving me able to do all the mummy stuff.

My daughter’s cerebral palsy wasn’t diagnosed until she was 15 months old.  One of the church leaders knew that we had an appointment at which we would be given details about the reasons for her failure to pass the normal milestones.  He put the date of the appointment in his diary, and the next morning he was on my doorstep at 9 o’clock to find out what we had been told and to let me have a good cry and to pray with me.

As the years went on my daughter was in and out of hospital frequently, and each time, this wonderful church machine swung into action again.  I don’t know how I would have managed without them.  My pastor’s wife came round to help three times a week for months on end with two of her own little ones in tow and just served me unstintingly.  My life passed in a blur of my daughter’s health crises, and I clutched at these lifelines gratefully.

At one stage we lived in one local authority and my daughter went to school in another, and during the school holidays both of them washed their hands of her and neither would provide physiotherapy.  She couldn’t survive the 6 weeks’ summer holiday without any physiotherapy, and it was an added burden on me having to carry out the demanding regimes every day.  And so a physiotherapist in the church got a few willing people together and taught them the physiotherapy exercises that were needed.  Then they took it in turns to come in and carry out her exercises each day throughout the holidays, giving me the time to sit and play and read with my eldest daughter.

Eventually baby number 3 was on the way, and in an effort not to have a third very premature baby, I spent 5 months more or less on bed rest, and in and out of hospital.  My mother came to stay as often as possible, but whenever she wasn’t there, the church swung into action again to fill her shoes.  One lady in particular whose house backed onto my back garden said I could phone her whenever my daughter needed the toilet, and she would come round and lift her out of her wheelchair, onto the toilet and back into her chair again, as I was not allowed to do any lifting.  She kept this up throughout my entire pregnancy.

That particular lady’s husband also came round every Monday evening for four years to pray for our daughter, until a change of job meant he could no longer do it.  It was from this time onwards that she began to learn to talk, defying the doctors’ prediction that she probably didn’t have the intelligence ever to learn any speech.  I am convinced that was an answer to his prayers.

When my daughter reached her teens, despite her learning disability, she began to be able to express, in her own simple way, a faith in and love for Jesus.  We spoke to our pastors about the things that she said, and they agreed that if this was her confession of faith, there was no reason why she shouldn’t be baptised.  She was enthusiastic when we asked her if she would like this, and so a day came when a couple of strong men lifted her out of her wheelchair and into the baptistry where her father and one of the pastors were waiting to baptise her.

When she was 29 her father died very suddenly after a short illness.  The pastor came round to minister to the family, and also to help us plan the funeral.  He included her very much in these discussions, never talking down to her or assuming that because of her learning disability she wouldn’t understand or be able to participate.  He offered her an opportunity to choose one of the hymns for the funeral, and she chose “Jesus is the name we honour”.

Now she is in her thirties, living in a residential care home close by, and comes with me to church every Sunday.  She remains a much loved member of the church, and is helped to participate, even sometimes being invited to choose what we will sing in the worship.

I know that people in the church still pray for us, and though our needs have changed and I don’t need the kind of practical help that was such a lifeline when she was small, the church continues to embrace us and is an ongoing source of support.

So, if anyone read the story I posted last time and wondered how a church should respond, this, my friends, is what pastoral care for a family with a disabled child looks like, and this is what love looks like.

The best and worst of the NHS

A&ED-G-Seamon [CC BY-SA 2.0 (http://creativecommons.org/licenses/by-sa/2.0)%5D, via Wikimedia Commons

Warning: this is a long post, but I feel the story needs to be told in its entirety.

The NHS has no bigger fan than I, and that’s why I support our junior doctors in their desperate fight to save our most treasured national asset from being stuffed into the trouser pockets of the Secretary of State for Health and his cronies.  Two of my daughters owe their lives to the NHS after being born prematurely.  And while it can have its faults (my ex-husband’s treatment while he was dying was utterly disgraceful) when I compare our lot with that of friends living in the USA I know how vital it is that we rescue this precious boon before it’s too late.  I have never had to beg friends to help fundraise for my child’s wheelchair.  I’ve never been threatened with having to sell my house to cover the costs of the local hospital having saved my spouse’s life.  I’ve never had to marshal all my friends to donate blood on my behalf because I hadn’t the means to pay the hospital back for the blood transfusions that had saved my life – all things which friends and family of mine in the USA have had to do.

But there is one area where the NHS is letting us down badly – specifically, letting down one group of patients, but ultimately letting society down, too, by teaching us not to value or esteem the worth of this particular sector of our community.  I am talking about patients with learning disabilities.  In over 32 years of parenting someone with a learning disability, I’ve seen the best and worst of treatment meted out.  I’ve seen orthopaedic surgeons whose eyes light up at the chance of getting another operation under their belt in the race to become the acknowledged expert in that procedure.  And I’ve seen orthopaedic surgeons patiently, over a number of appointments, taking the time to get to know my child really well and make the best informed judgement that they can about what is really in her interests, including at times deciding not to operate.  I’ve seen planned appointments done so well that everything possible was put in place to mitigate my child’s fear and anxiety in the unfamiliar and terrifying situation that she found herself.  I’ve seen consultants fight with every weapon at their disposal to stop a social worker forcing through a decision that would undermine my child’s medical treatment.  I will forever be grateful to our local ophthalmologist who moved heaven and earth to save my daughter’s sight, and to the orthopaedic surgeon who took the trouble to learn her “trigger” words and avoid using them in front of her, leading to highly entertaining conversations about a “sharp pointy thing” to avoid using the word injection!

But my experience also bears out the stories that we hear again and again from families, that when their family member with a learning disability presents with a medical emergency, the system lets them down, partly because of a lack of training of A&E doctors and partly because of a culture that devalues the lives of people with learning disabilities.  The shocking statistic has recently been revealed that people with intellectual disabilities are three times as likely as the rest of us to die prematurely from preventable causes, and that hospitals are refusing to investigate these deaths.  I am regularly invited to write “do not resuscitate” on my daughter’s medical notes, something I have never been asked to do for her sisters whose general health and life expectancy is the same as hers, but who have no disabilities.  (See https://www.change.org/p/health-secretary-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives).

One of the features of autism is an inability to cope with change, and often the response to this is an autistic meltdown, sometimes accompanied by self-harm, which can lead to a medical emergency.  Autistic people in mid-meltdown are generally treated as if they are having a tantrum and ought to stop the behaviour at once.  But what is little understood is that when an autistic person is having a meltdown, it is not something she is doing, but something that is happening to her.  Brain scans have shown that an autistic person in mid-meltdown displays the same electrical brain activity as someone in the middle of an epileptic seizure.  They can no more control what they are doing than the seizure patient.  Yet I have heard care staff refuse to sympathise with meltdown injuries because “it’s her own fault” – something they would never say about an epilepsy patient who fell and sustained a head injury during a seizure.

The first time I realised my daughter was blind in one eye was when she developed a cataract which suddenly appeared over the course of a fortnight.  She had recently changed school and was now boarding away from home and came home at weekends, a major life change which an autistic child would find exceptionally hard to deal with.  Frequently, during the course of a meltdown she would punch herself in the eyes, often resulting in extreme swelling of the eyeball.  Because she continued to drive herself competently in her powered wheelchair, no one realised that she had lost the sight of her right eye.  When the cataract developed, she was passed from the doctors near our home to the doctors near her school and back again until finally, after a lot of shouting on my part, she was seen at a hospital near her school.  Examination revealed that her retina had obviously been detached for a long time, and she had probably had no sight in that eye for months, if not years.  It was decided, correctly, I believe, not to remove the cataract as this would now be a purely cosmetic procedure.

Ten years later, in the course of struggling to adapt to change, with leaving college and moving permanently into a care home just five minutes from home, she again blinded herself, this time in her one remaining sighted eye.  I rushed her to A&E.  Incredibly, the doctors weren’t interested.  I’m convinced that anyone else presenting with a detached retina in their only sighted eye would have been admitted and operated on within twenty-four to forty-eight hours.  No amount of pleading on my part made anyone in the A&E department treat this as an emergency, even though it was obvious that she could see nothing at all, even familiar objects held quite close to her, and was beyond terrified at being plunged into this world of darkness.  It was December 9th.  In the end I was sent away with an outpatient appointment for the end of January.

Back home, I made frantic phone calls, trying to speak to the ophthalmologists’ secretaries, desperately trying to get someone to see that if this was left untreated for 7 weeks it would be too late to save her sight.  Finally, in desperation, I loaded her into the car and, together with her keyworker, drove to Moorfields eye hospital, only to be told that they could not see her because they were not equipped to operate on someone whose disabilities increased their risk for anaesthetic.  However, they did phone our local hospital and at last we were given an appointment for the following Monday.

That was when we met our wonderful local ophthalmology consultant who immediately grasped the urgency of the situation, admitted her as an emergency, and in a 3 hour operation delicately repaired and reattached her detached retina which was also torn in five or six places.  He has followed her up every six months since then, has removed a cataract from the eye which developed a couple of years later, and makes sure to see her frequently enough to pick up any problems at a very early stage should they begin to develop.  I cannot praise this consultant highly enough but what a contrast to the casual attitude in A&E which appeared to assume that sight does not matter if you’re already intellectually impaired.  The stress to a parent of realising that your child has become blind and no one thinks that it is important to try to restore her sight is unimaginable.

This month we’ve had a parallel experience.  About 5 weeks ago she suddenly started asking to go to the dentist – unheard of!  Because of her extreme fear of medical procedures she was reluctant to let the dentist look, but the dentist did manage to spot a gum abscess, and prescribed antibiotics.  Over the next week, her pain spiralled out of control, with a massive increase in self-harming behaviour.  The antibiotics were doubled, still with no effect.  At the next dental appointment the dentist could see the sepsis spreading, and warned that it could encroach on her eye (the sighted one).  Mild painkillers were prescribed.

A week later, another dental appointment.  This time the dentist could clearly see loose teeth, a sinus draining pus and an abscess. She took her temperature which registered at 40.  She got the care staff to take my daughter out so she could have a quiet word with me without alarming her, and explained that the loose teeth would have to be extracted and the gum cleaned out with antiseptic.  Obviously a patient who was too anxious even to let a dentist put a mirror in her mouth would have to have this done under general anaesthetic. She wrote a letter then and there, gave it to me and instructed me to go to A&E and hand the letter to the A&E doctor.  We duly showed up at A&E with my daughter quiet but highly anxious.  The young A&E doctor looked very uncertain as she surveyed this patient in the wheelchair with the odd way of talking and the unpredictable reactions.  She read the letter and attempted an examination which had to be abandoned because of my daughter’s reaction of extreme fear.  I explained that the high risk of self-harm included the risk of permanent blindness, as she had been hitting her eyes again.  The doctor said she had been able to see the draining sinus and loose teeth and added, in front of her, “We’ll have to take those teeth out.  I’m not sure if we can admit her now.  I think we’ll probably send her an outpatient appointment, I’ll go and see.”  Then she flounced out of the room, leaving those words “We’ll have to take those teeth out” sinking into my daughter’s consciousness.  Of course this possibility had never occurred to her. She didn’t know it was even possible to take teeth out.  And I had avoided telling her because I wanted to be able to explain the procedure to her in simple words at the last possible minute, to minimise her anxiety. We were left sitting in that room for an hour and a half with my daughter screaming, hitting, biting and scratching herself with a combination of terror and dental pain.  It took the two of us desperately working together to try and keep her safe.  At the end of that time, the doctor reappeared and told us to go to the pharmacy to collect another prescription for antibiotics which she would drop off there, and then to go home and await an outpatient appointment through the post.  Later the dentist phoned me and just could not believe that, despite her letter, her patient had not been admitted for urgent treatment.

The following evening I received a call from the care home.  My daughter was completely beside herself with pain that was totally out of control.  She had destroyed her computer and was hitting herself so badly that they had no choice but to sedate her for her own safety – very much a last resort.  I contacted her GP who prescribed stronger pain killers – so strong, as it turned out, that my daughter couldn’t keep them down.  The next few days were a nightmare of trying to get enough paracetamol and ibuprofen down her to at least take the edge off the pain.  Her temperature hovered around 39-40.  The care home instituted a round-the-clock watch to try and prevent her self-harming.  Nonetheless, by the time the outpatient appointment came round five days later she presented in the clinic with black eyes from self-harm.  I pointed them out and described her history of severe self-harm.  The consultant confirmed the diagnosis of the dentist and A&E doctor (the care home staff had been getting her to practice opening her mouth wide, so though she wouldn’t let him near her, he still got a reasonable look).   The consultant agreed that this needed treating urgently but added that urgent meant weeks rather than days.  I pointed out the black eyes again, and warned him that if this was left for weeks she would in all probability be permanently blind before it was treated. He was unmoved.  Again the dentist phoned later in the day, and again was utterly incredulous that the patient hadn’t been admitted and treated as an emergency.

The appointment came for 2 weeks later, but in the meantime her pain and anxiety was so completely out of control it was becoming impossible to keep her safe, even with sedation, which had completely stopped having any effect.  On the Friday the care home manager phoned 111.  They contacted the GP who came to visit at lunchtime, then went away to phone the hospital and request immediate admission.  The oral surgery department promised to phone back.  The doctor waited at the surgery until 9pm but the call never came.  The manager called 111 again in the afternoon, and the on call GP rang back.  Again she contacted the hospital.  Again they promised to return the call but never did.  Finally the manager rang 111 again.  The on call GP spoke to the oral surgeon and explained the situation and the need for an immediate admission.  The oral surgeon was just going into theatre and said he would phone the care home as soon as he had finished.  I waited at the care home half the night for the call that never came, and finally went home and slept with my phone in my hand but it didn’t ring.  My daughter was given a sedative at 7pm because of the degree of self-harm, and finally fell asleep at 6am.

The next morning we again dialled 111.  We were told to take her to A&E at our local hospital.  We objected – as there was no maxillofacial department there, it would be pointless to go there with her.  We were told we must take her there.  The care home manager, who had given up her bank holiday Saturday off to try and sort this, came with me to A&E.  On arrival we were told there was no point having taken her there because there was no maxillofacial department and we replied, “We know.”  We were told to take her back to A&E at the hospital where she had already been seen.  The manager explained that she had already phoned them and been told the department was closed and no surgeons were present.  The nurse replied, “The department may be closed, but I guarantee there’s an on call oral surgeon available, and you need to take her there.”

At this point my patience completely ran out.  “Why would I take her there?”  I asked.  “Their maxillofacial team has made it abundantly clear they don’t give a toss about her.  Why would I trust them to operate on her?”  I suggested taking her to another nearby hospital which I knew had a maxillofacial department.  The nurse persuaded me that if we went to A&E there, they would ascertain that she had already been seen at another hospital and would refuse to treat her but insist on sending her back to the hospital that had already seen her.

Reluctantly we went back to A&E at the first hospital, where we were told that they probably wouldn’t treat it as an emergency and we would probably have to wait two weeks for the appointment we’d already been given.  I reiterated my fears that she would have blinded herself again by then, and that it was inconceivable that someone could be condemned to lose their sight just because no one would treat their oral pain and the sepsis which was, by now beginning to affect her ears and throat.  At this point, the care home manager added that as soon as the weekend was over she would be reporting the hospital to the CQC.  And suddenly – hey presto!  There was a space on the emergency list and she could be taken to theatre within the hour.

I’m sure it doesn’t take much imagination to realise that life with a disabled child is harder than life for other parents and doesn’t stop when your child grows up.  So I would like to know why families already under much greater stress than other families are constantly subjected to unbelievable additional stress at the hardest times of their lives.  And why is it acceptable to subject people with intellectual disabilities to suffering that no one else would be asked to put up with?  Imagine if you or I walked into the dentist with raging tooth pain, an abscess and spreading sepsis.  Do you imagine we would be told to suck it up for six weeks until someone could be bothered to treat us?  So why is that acceptable for someone just because they can’t be treated simply, in the dentist’s chair?

My daughter is normally a joyful soul.  She has a fierce loyalty and devoted affection for her carers, family and fellow-residents.  She has a very witty sense of humour and is wonderfully gifted musically, including having perfect pitch.  She takes a keen interest in trains and hand dryers and can tell you a great deal about how they work and what are the differences between different brands and types.  To see this lovely young lady with her cheerful disposition reduced to a screaming heap of terror literally trying to bash her own eyes out with pain and distress is something no family should ever have to be put through.  But it is happening, every day, to people with learning disabilities.

As said at the beginning, the NHS can be brilliant at meeting the needs of disabled patients when the treatment is elective and carefully planned.  But we have to improve the management of emergencies for these patients.  Someone in the Clinical Commissioning Group has asked me to issue a formal complaint about the hospital.  I think that instead I’m going to offer to run training workshops for their A&E doctors in how to work with patients with learning disabilities.  Let’s hope they take me up on it.

 

Who are the disabled ones?

I wrote this for Through the Roof (http://www.throughtheroof.org/info-and-resources/articles/ros-blog/) and it is reproduced here by kind permission.

The day my second child was born, my world changed forever. She was thirteen weeks premature and the doctors had been warning me to expect her to be stillborn. Even if she was alive, they said, she wouldn’t cry, as her lungs would be too immature. Moments after she was born I heard her give a fairly powerful cry – it was, and remains, the most wonderful sound I’ve ever heard in my life.

Now began her long, hard fight to hold on to life. It was more than ten weeks before the doctors could tell us that she would live, and at least two years before we could say with confidence that her life was no longer in danger.

From her birth onwards our world was turned upside down. I wrestled with God over what was happening, as I came to grips with a world of sleepless nights, emergency resuscitations, failure to thrive, physiotherapy and low, low educational expectations. Things that my other daughters received by right (such as appropriate education) had to be fought for tooth and nail.

Again and again Ellen defied the prognosis and achieved things we had been told were beyond her. For example, we were told she hadn’t the intelligence to learn any speech and now at the age of 30 she can not only hold a conversation (on her own terms!) but has a reading age of 8. Nonetheless, her learning disabilities are considerable, and as a result much about the world remains puzzling, confusing and frightening to her.

One thing I observed as she grew up was the simplicity and yet the undoubted reality of her faith in God. Her music therapist at school (not as far as I know herself a committed Christian) remarked that Ellen was clearly developing her own faith and kept asking for songs about God’s love during their music therapy sessions – so she was becoming, in her own way, an evangelist, too! By her late teens she was clearly expressing in simple words her own faith in Jesus. We asked her if she would like to be baptised and she replied with a very enthusiastic “Yes!” So we found a couple of strong friends to carry her from her wheelchair to the baptistry and she was baptised at the age of 19.

This caused me to reflect on my own relationship with God. How often I needed my questions answered before I felt safe to trust Him; how I needed to be able to work out logical reasons for my faith along with my experience of God; how important it was to me to be able to explain exactly why I believed what I did. None of that was needed for Ellen. She constantly flung herself into the arms of her heavenly Father, certain that He was there and would hold her. She saw things that I, with all my theological study, could not see because my spiritual eyes were dim.

In 1 Corinthians 1.20, 25 and 27 Paul writes, “Where is the wise person? Where is the teacher of the law? Where is the philosopher of this age? Has not God made foolish the wisdom of the world?…. For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength…. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.”

Amos Yong wrote these words: “If people with intellectual disabilities represent the foolishness of the world, what hinders our viewing them as embodying the wisdom of God?”

I suspect that when the world is wound up and all things are made new, and we begin to find out what things in our lives were of eternal value, and what things have passed away with the temporal world, we will have to revise our whole view of disability. We who thought we had the advantages in life – the strong, the clever, the ones the world regards as gifted – will find that on a spiritual level we have been severely disabled compared to our brothers and sisters who lacked those intellectual giftings, but whose spiritual life is marked by abilities and giftings we never knew they possessed. In that day they will be our teachers, leading us from the place of our spiritual impoverishment on the long road to catch up with where they already are in their deep understanding of, and relationship with, God.