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?

 

What constitutes dignity?

human-dignity
Photo:Trounce/Wikimedia Commons

When I was teaching the topic euphemistically referred to as “end of life issues” with my RE classes in school, I sometimes used to show them the Channel 4 documentary about the fight of Diane Pretty, a woman in the advanced stages of motor neurone disease, to be allowed to have her life ended by her husband without him having to fear prosecution.  The case went all the way up through the British legal system and finally to the European Court of Human Rights.  At every stage the judges upheld the status quo, refusing to legitimise euthanasia, and affirming that the right to self-determination does not extend to the right to choose when and how to end one’s life.

The problem with the documentary was that it made no attempt to be unbiased, but was unashamed propaganda for Diane Pretty’s point of view.  It was quite obvious that this distressed, depressed and vulnerable woman’s situation had been hijacked by a pro-euthanasia organisation which found her a handy promotional tool for its own agenda, and I tried to make that point to the students and get them to consider other points of view also.  When someone so despairs that she wants her life to end, she is not suffering from disability, she is suffering from depression, and the solution is not to confirm her despair but to treat her depression.

In particular, the documentary showed a scene of Mrs Pretty’s soiled incontinence pad being changed by a carer who came to the house especially for the purpose, and it cited this as evidence of a total loss of dignity.  I used to point out to students that I care for a disabled person who has to have carers come in every day to help with exactly this personal care task, and whose cheerful good spirits and sense of humour enable her to retain her dignity and humanity even while such intimate help is being given.  Loss of dignity is an attitude of mind, not an objective fact.

Now I am watching elderly relatives of mine also reaching a point where they are unable to carry out intimate personal care tasks for themselves, and having to rely on paid carers to assist them.  I think this takes far more mental adjustment for them than for someone who has been disabled all her life and has never known what it is not to be reliant on others for this kind of care.  Along with this goes a need to depend on others to provide meals, and the restriction of no longer being able to go out and socialise in the way that they used to.  One of them in particular was always ready, well into her eighties, to serve others by giving lifts in her car and I know that she feels it very keenly that she can not only no longer give other people lifts to meetings, but cannot get to those meetings herself.  And I believe that when our older generation reach this stage of life, it is absolutely vital that we do not present this to them as a loss of their dignity.

I think this is an error which even the church unwittingly falls into.  Ministry has traditionally been seen as a function of the physically able and intellectually gifted.  I recently came across an online forum where a young man was asking for help regarding a vocation to the Catholic priesthood.  It was clear from what he wrote that his spiritual journey had been leading him to this point for some time and he was longing to seek ordination, but was worried as to how his calling would be seen by the Church, since he was blind.  I was very saddened to read the responses – telling him, firstly on a practical level that he would be unable to celebrate and administer the Eucharist, and so would not be able to carry out the duties of a priest, and secondly, and more disturbingly, on a theological level that the priest represents Christ vicariously to the people, and so an imperfection such as blindness would incorrectly caricature Christ as imperfect and for this reason he could not consider a priestly vocation.  (I should point out that these were the opinions of the forum respondents, not an official position from the Church).

It is hard to enumerate the many levels on which this is both heresy and nonsense. Firstly, where is the priest who is devoid of imperfections and therefore represents Christ adequately?  I dearly loved my philosophy tutor when I was a student, an elderly Jesuit priest who was bent nearly double and in constant pain from ankylosing spondylitis and who had a penchant for risqué jokes.  Coming as I did from an ultra-conservative evangelical background, he did more than anyone else for my spiritual formation in my late teens and early twenties, opening my eyes to profound ways of relating to God in contemplation and silence and to the wideness and encompassing nature of the love and mercy of God.  The idea that any minister of God has no physical, psychological or spiritual imperfections and can therefore adequately reflect the perfect nature of Christ is nonsense.

Secondly, there are no duties that a blind priest could not be enabled to carry out with the right reasonable adjustments – the Bible and prayer book in Braille, a fellow-priest or altar server to show him where to stand, even a guide dog to lead him along the altar rail, why not?

Thirdly, a priest who has himself overcome more difficulties in life than many of his congregation, who has learned to depend on God in the hard times, and who has faced head-on the hard questions about human suffering and the sovereignty of God and has emerged with his faith strengthened, has a wealth of spiritual riches to offer his congregation.

Fourthly, who says that Christ was devoid of imperfections, or at least of vulnerabilities?  During His years in the carpenters’ shop, do you think He never slipped and gashed His arm with a chisel, or hit His thumb with a hammer?  We are told that He was tested in all points as we are, yet was without sin.  So in all likelihood he did hit His thumb, but didn’t let rip with a volley of expletives!

But more than that, vulnerability, weakness and what today’s society considers indignity was His intention and plan for His human existence.  When God first put in an appearance on the earth, He was not wearing a stitch of clothing, and had no control of His bladder and bowel, dependent on His parents to keep Him clean.  I once read that evangelicals, while affirming their belief in the dual (human and divine) nature of Jesus, are nonetheless guilty of a sort of unconscious Docetism that tries to gloss over the reality of His humanity, as if it were somehow irreverent to think of Him as really sharing all that human frailty entails.  But in the baby of Bethlehem we are confronted by God in a dirty nappy, crying for a feed.  And He ended His life in vulnerability, hanging exposed and naked before a mocking crowd, unable even to wipe away the blood and sweat that ran down His face.

If we as the Church are to be truly the Body of Christ then everything that His body did when He was on earth, we are to do, too.  Of course that means developing a disciplined prayer life, feeding the hungry, ministering and loving.  But it also means unashamedly accepting frailty, vulnerability and the need to receive the assistance of others to do things we would rather do ourselves.  We must not, at all costs, allow the elderly and disabled members of the Body to believe that their loss of ability and their growing dependence entails a loss of dignity, lessens their contribution or their value in the life of the Church or makes them less Christ-like.  The very reverse is true.  As we will be singing in a couple of weeks’ time, “He was little, weak helpless; tears and smiles like us He knew.”

Let’s affirm to our elderly members, our disabled members, our weaker and more vulnerable members, “In your patient acceptance of the frailty of your body, we see a reflection of Jesus.  In your need to turn to others for assistance, we see the humility of God.  In learning from you, we feel like those early disciples, sitting at Jesus’ feet to learn from Him.  And in serving you, we feel the privilege as deeply as if Christ Himself were in front of us, accepting our service.”

 

Lord Shinkwin’s Abortion (disability equality) bill.

Did you know Lord Shinkwin has introduced a bill to bring the time limit for abortions on the grounds of disability into line with the time limit for all other abortions? He sees it, rightly in my view, as a matter of disability discrimination. You can read my summary at http://www.throughtheroof.org/summary-of-briefing-on-lord-shinkwins-disability-abortion-equality-bill/ with a link to my full briefing if you’re interested in a more detailed analysis.

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.

Sunday School rota? On your bike!

You’re wondering why she was less than enthusiastic when you asked her to take her turn on the Sunday school rota. After all, she wants her children to participate in your children’s ministry.  Surely the least she can do is take her turn.  Some people have no commitment.

Here’s why she didn’t respond as you wanted.

6am:  Eight month old starts crying.  She goes in to him.  He’s choking on mucus, his cheeks pale and lips blue.  She puts him wearily over her knees (it’s been a long night), tilts him head down and begins to tap all over his chest.  Her now expert ears can hear which areas are congested.  She concentrates her efforts over those areas, tapping to loosen the congestion.  She turns him over and does the same over his back.  Then she takes out the suction equipment, tries to hold him steady and keep him calm while she passes the tube down his nose and sucks out the mucus she has managed to loosen.  Gradually the colour flows back into his lips and cheeks and she sighs with relief.

6.30am: She prepares his milk and sits down to feed him. His sucking and swallowing mechanisms have been affected by the cerebral palsy and it takes an hour and a quarter to persuade the bottle down him.  She prays the two year old won’t wake before the feed is finished.  Finally she squeezes the last of the bottle into his mouth, and as he finishes it she hears the sound of bouncing on the cot mattress and a chirpy voice shouts, “Mama!”

She rises to go and as she stands up with him in her arms, he suddenly vomits the entire feed all over her. She puts him, now yelling furiously, onto the changing mat and goes to let his big sister out of the cot before going to shower and change her clothes.  All the while his hungry cries grow more and more frantic, and the bright eyed toddler is darting in and out of the shower fully clothed.  She wraps herself in a towel and wonders which task is more urgent – to change him out of his sodden, vomit-covered clothes, or to get his shivering sister out of her soaking pyjamas.

She compromises, wrapping a dry towel round the toddler before changing and washing the baby. He is still yelling with hunger, so she makes up another bottle and painstakingly feeds it to him again.  At some point her husband leaves for work.  She vaguely hears his goodbye and feels guilty that she hasn’t spoken to him this morning.

9am: Finally, two and a half hours after it started, the baby’s feed is finished, and this time he keeps it down. He can’t sit unsupported but fortunately he’s still tiny enough to fit in the bouncing cradle, so she sits him there and goes to undress, dry and clothe his sister.  She sits her in the high chair while she at last goes to get out of the towel she’s been wrapped in since her shower and get herself dressed, to an accompaniment of, “Mama! Bek-bek” over and over from the two-year-old.

9.15am: She starts mixing some ready-brek for the toddler to eat. She’s just about to put the bowl in front of her when a glance at the baby tells her that he’s not breathing.  His eyes are rolling and his lips are blue.  She lands the bowl of breakfast on the counter and drops to the floor beside him.  She pinches his ribs to try and stimulate his breathing.  “Not today,” she prays.  “Please don’t let today be one of those days when I have to dash up to the hospital and have him put in oxygen.”

She flicks the sole of his foot with her thumbnail, and to her relief he gasps and begins breathing again. She stays there, watching him, until she is satisfied that the rhythm of his breathing is back to normal, and the hungry crying of the toddler is so insistent that she can no longer ignore it.

9.30am: She returns to the bowl of ready-brek which has now gone cold. Unable to suppress the tears any longer, she sobs as she scrapes it into the bin and begins again preparing a fresh bowl.

9.45am: She finally manages to set a bowl of breakfast in front of the toddler who tucks into it hungrily. The doorbell rings.  Drat!  She has forgotten about the health visitor appointment.  She goes and lets her in.  The health visitor surveys the scene in the kitchen and looks at her watch.  “It’s ten to ten,” she remarks.  “It’s very late to be giving Sonia her breakfast.  I’m sure she must have been awake for a few hours by now.  You can see how hungry she is, it’s hardly touching the sides as it goes down.  You must try to be a bit more organised and feed her earlier than this.”

“I musn’t cry,” she tells herself. “Not in front of the health visitor.  She’ll think I’m not coping.”  She bites her lip and looks out of the window.

The health visitor is taking out her scales.  She lifts the baby from the bouncing cradle and weighs him.  She tuts and shakes her head.  “He’s lost four ounces again this week,” she says.  “If this carries on he’s going to have to be readmitted to hospital with failure to thrive.  You are going to have to try to get more feed down him.”

“I feed him six times a day,” she thinks. “It takes two and a half hours every time.  Where does she think I’m going to find more than fifteen hours in my day to get more food down him?”  The health visitor is talking at her, but she isn’t hearing it.  All she can hear is the fear clutching at her heart.  “I must do better, or they’ll take my babies away.”

Suddenly the health visitor stiffens. She snatches the baby up.  “Does this happen often?” she asks.

Once again, he’s blue and not breathing. She takes her son from the woman and once again flicks the soles of his feet.  He gasps and starts breathing again.  “Yes,” she replies, “It happens six or eight times every twenty-four hours, day and night.”

“You’re obviously not keeping his chest clear enough,” the health visitor replies. You will have to step up the physio and suction regime.  You must make sure to do it before every feed.”  In another minute she’s gone, sweeping out of the door, leaving in her wake the unspoken terror of having the children removed.

10am:  She realises that she’s had nothing to eat or drink yet today.  She cleans the toddler from breakfast and puts her in the playpen with a selection of toys and books.  The baby starts whining, an expression of pain on his face as he tries in vain to stretch his arm far enough to get his fist into his mouth.  She puts on a calming CD and makes a cup of coffee.  She drinks the coffee and washes up the breakfast.

10.30am:  It’s time for the baby’s next feed.  She makes up the bottle and, mindful of the health visitor’s words, tries her very best to get it all down him.  An hour and a quarter of trying to persuade the milk into his mouth with a finger under his chin and tickling his throat to get him to swallow it.  His sister sits throwing books out of the play pen.  Mama endeavours to read them to her, all the while using both hands to try to feed him, breaking off periodically to turn a page.  The bottle is very nearly finished, but no, it’s too good to be true.  He vomits all he has taken, all over himself, herself, the carpet and the book she’s trying to read.  His big sister, seeing her story disappear under a floodtide of milk, sets up a loud wail.  Mama hands her three biscuits, which she hopes will distract her for long enough, mops up the book and carpet and takes him upstairs to bath and change him before changing out of her own soiled clothes.

12 noon: Clearly he is too congested to feed, so she again does his chest physio and suction and then makes up another bottle.

1.30pm: The 10.30am feed is finally finished, and a hungry toddler is demanding lunch. She puts the baby back into his bouncing cradle, and he immediately falls asleep.  She makes a sandwich and segments a satsuma.  She sits big sister in the high chair with a cup of juice and the plate of lunch.  She thinks about making herself a sandwich; maybe today she will get a chance for some lunch while he sleeps.  She reaches for the bread bag, and then realises that she can no longer hear his snuffly breathing.  Turning, she sees his lips are again blue and the motion of his chest has stopped.  She starts again to pinch his ribs, and this time he begins to breathe again with no further action on her part.

2pm: As far as the toddler is concerned, lunchtime is over and she is demanding to get down. Setting her on the floor, she forgets any idea of her own lunch and spends half an hour playing with stickle bricks and helping to tuck up a doll in the toy pram.

2.30: With the health visitor’s words ringing in her ears, she wakes up the baby and does his physio and suction in the hope that the next feed will stay down and he will keep breathing. Big sister has had a taste of mama’s attention, and is not going to relinquish it lightly.  She waits until mama is preparing his next bottle, then puts her hand in her baby brother’s face and pushes hard.  Baby starts to scream as loudly as his damaged lungs will allow.  She tries to keep her patience.  “No,” she says firmly, “you mustn’t hurt him.  That’s not kind.”  And she continues to make up his bottle.  She turns round in time to see his sister slap him, and this time patience goes out of the window.  “How do you like it?” she screams as she slaps her back.  Now both children are wailing, and it’s her fault.

3pm: She settles down to feed him, but big sister has had more than enough of baby brother hogging the limelight. She hurls a stickle brick at his head.  Dumping him on the floor, mama grabs her unceremoniously and carries her up to bed.  A quick nappy change – tinged as ever with guilt that she really should have started potty training by now – and she almost flings her into the cot, throws the quilt over her and runs back downstairs.  The indignant cries don’t last too long, and soon big sister is asleep.

4.15pm:  Baby has just thrown up his feed all over her again when the doorbell rings.  It’s her house group leader, arriving with a meal she’s cooked for her.  She accepts it gratefully.  For once she won’t have to send husband to the Chinese as soon as he gets in from work.  House group leader takes one look at mama and baby, both covered in regurgitated milk.  “I’ll sort him out, you go and get changed.”  Thankfully she leaves him to be washed and changed and goes and gets into her third outfit of the day.  The washing basket is overflowing, so she carries a load downstairs and puts the machine on.

4.30pm:  Housegroup leader brings the baby back and rocks him while mama prepares another bottle.  She looks her up and down, standing by the sink measuring the milk powder.  “You’ve lost an awful lot of weight,” she remarks.  “Are you eating properly?  You’re not depressed are you?”

“No,” she wants to reply, “I’m not depressed. I’ve just been told that my baby will never walk and may not have the intelligence to learn any speech, I can’t find the time to be a proper mother to my toddler, and the health visitor thinks I’m not looking after them well enough, so I’m terrified she’s going to take them into care.  What have I got to be depressed about?”  But it’s too much effort, and she sits down without a word, takes the baby from her and painstakingly feeds him again.  House group leader can’t wait the remaining hour that it takes to finish his feed, so she says her goodbyes and leaves.

5.30pm: It’s tempting to leave toddler to sleep, but she won’t sleep tonight if she sleeps too long now, so she puts baby back in his bouncing cradle and wakes up his sister. She cuddles her on the sofa as she comes to, and is just about to read her a story when she sees he’s going blue again.  She deposits a wailing toddler on the sofa and bends over baby, pinching his ribs and flicking his feet until his breathing starts again.  “One day,” she thinks, “I just won’t get to him in time.”  Right at the moment she can’t decide whether that would be a good thing or a bad thing.  She’s still bending over him so she doesn’t see the story book coming until it hits her on the back of the head.

She picks up the miscreant, carries her out to the hall and sits her on the naughty step, telling her she can jolly well stay there until she learns to behave. Then she sits on the sofa and sobs.  A little voice says, “I sorry mama,” and she relents and brings her back in.

“Let’s have a drink,” she says, and goes to make a cup of juice and a mug of coffee and pops the house group leader’s meal in the oven to warm up. Then, cuddling her little girl, she manages half an hour of story reading until it’s time to tap the baby’s chest and bring out the suction machine again.

6:30pm:   She dishes up some of the dinner for the two-year-old, and mashes a teaspoonful through the sieve for the baby.  With baited breath she starts his bottle feed.  Husband arrives home half way through and frowns at the books and toys strewn all over the floor.  Thankfully baby keeps his bottle feed down this time.  She takes a spoonful of the pureed dinner and gently pushes it to his mouth.   As soon as the spoon touches his tongue he starts to gag, and before she knows it he has vomited an entire feed over them both again.  Husband sees to toddler’s bedtime while she cleans and changes baby and gets into her fourth set of clothes of the day.

8pm: She finishes baby’s feed and gets him to bed. The baby monitor is on and she can hear his grunting breaths.  She dishes up a meal that must have been nice before it became dried up and burnt around the edges.  She is halfway through when they both hear the grunting stop.  “I’ll go,” says husband, and he runs upstairs to flick baby’s feet until breathing resumes.  He comes back and finishes his now cold, dried-up dinner.

9pm: The phone rings. It’s mother-in-law.  She wants to know, since it’s been such a beautiful day, whether mama managed to take the children out for a walk.  The fresh air would do baby’s chest a power of good.  She lets husband take the call.

9.30pm: Together they load the dishwasher. She empties the washing machine and puts the clothes on the airer.  The basket is overflowing again, so she brings the next load down and re-sets the washing machine.

10pm:  Baby is sleeping peacefully, but remembering the health visitor’s words, she wakes him up to do his chest physio and suction.   She prepares his bottle and husband offers to feed him so she can get some sleep.  She changes into her night clothes and climbs into bed.  A guilty voice at the back of her head is telling her that she hasn’t prayed or read her Bible today, and that she can’t really expect God’s help with her children if she doesn’t have time for Him.  But she’s so tired that she falls asleep in the act of reaching out for her Bible and only half-rouses when husband comes in to change out of his vomit-covered clothes.

12.30am:  Suddenly she’s wide awake.  She tries to work out why.  Then she realises.  She can’t hear the grunting that tells her he’s still breathing.  She’s out of bed like a shot.  She pinches his chest.  Nothing.  She flicks his feet.  How long has he been like this?  She has no idea.  Frantically she pinches his arm, hoping to make him cry.  Finally she begins the mouth-to-mouth technique the hospital taught her.  He begins to breathe again, very shallow breaths.  His lips remain blue.   Her husband is already on the phone to house group leader.  She’s there to babysit the toddler in ten minutes and they jump into the car.  Fortunately the hospital isn’t far away, and before long he’s in an oxygen mask.

2.30am:  Husband goes home to get some sleep and she sits beside the cot and lets the nurse feed him, mop up the vomit and feed him again.  She spends the rest of the night sitting in a chair beside his cot.

6am:  The chest physio and suction routine begins again, this time under the scrutiny of a paediatric nurse.

6.30am:  Time to feed him again.  The nurse frowns.  She takes over the feed, and it doesn’t take her long to realise there’s nothing wrong with mama’s technique.  This baby has big problems sucking and swallowing.

9am: The 6.30am feed is at last finished. With the extra oxygen he’s a good colour.  It’s Saturday, so husband brings toddler in to the ward.

10am: Time for physio and suction again.

10.30am:  The doctor does a ward round and discharges him, but they can’t go yet because it’s time for his next feed.

1pm:  The 10.30am feed is finally finished and they can at last go home.  Roll on Sunday morning.  That hour when they’re in children’s ministry is the only break she ever gets from her little ones.

And that’s why she doesn’t want to be on your Sunday School rota.

 

 

#MeBeforeEuthanasia

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I have just been to see the film Me Before You.  Truth to tell, I didn’t really want to see it.  But I believe it needs to be challenged, by the more people the better, and I didn’t feel I had the right to challenge it without first going to see it.  This film peddles the same dreary misinformation about disability as Million Dollar Baby, in whose footsteps it firmly treads.  It’s a well-made, well-acted film, which makes it all the more dangerous by making its message seem plausible and unquestionable.

The story is of a fabulously rich and very athletic young man who is paralysed in a freak road accident.  Despite having everything that money can buy to make his life easier, the adoring love of his parents, and the wonder and delight of a young woman who comes into his life as a carer/companion and enables him once again to experience a truly vibrant love, he decides to commit suicide because, well, that’s how much disability sucks, isn’t it?

Let’s get the just-plain-silly bits out of the way first of all.  When Louise, the young companion, peels back Will’s bed sheets, it reveals an improbably muscular torso and arms for someone who has been a quadriplegic for two years.  Miraculously, the disabled man’s bodily functions suspend themselves unless his male carer is present, so the love of his life never has to deal with a bag of urine or a soiled pad.  And, having repeatedly nursed my own quadriparetic daughter through many a bout of pneumonia, to see him lying in hospital, at death’s door from pneumonia, his skin a rudely healthy pink, made me want to laugh out loud, and underlined the fact that this is a film made by non-disabled people, for non-disabled people, both of whom have no idea of the real magnitude of the problems presented by severe disability, nor of the heights of triumph of which the human spirit is capable.

Perhaps the best way I can show the effect of this film is to ask you to imagine a film in which a black person living in a largely white community (and played by a white actor “blacking up”) concludes that his life is so unlike that of the white people around him that he would be better off dead, and obligingly commits suicide, leaving a large amount of money to someone who is thus conveniently enabled to leave a life of poverty and restriction in order to better herself.  Of course Hollywood would never make such a film – there would be outrage at such dehumanising and belittling of someone for their ethnicity, and quite rightly too.

But apparently Hollywood has no such qualms about a non-disabled actor “cripping up” to tell us that if you lose the physical abilities you once had, nothing – not even the vibrant and devoted love of a person full of life and zest – can ever make your life worth living again.  While this is not seen as acceptable based on ethnicity, gender, sexual orientation or any other trait, disability is placed into another category and it is apparently tolerable to diminish the value of disabled people’s lives to the point where they should consider themselves better off dead.

Why, in the twenty-first century, is such an idea even countenanced?  The messages of this film seem to be:

1.  If your current boyfriend is enough of an ass you might even fall for a cripple.
2.  Even the strongest of human spirits is not indomitable enough to weather a terrible storm and wait for life to feel better again.
3.  Needing assistance with bodily functions robs you of all your human dignity and leaves you with no hope but to find “dignity in dying”.

And that’s the key to the message of this film.  There is a highly lucrative business in persuading people to believe that assisted dying affords more dignity than assisted living.  Of course it is far cheaper for health insurers in the US and the NHS in the UK to kill someone than to provide for their lifelong care.  But is that any reason to keep pushing this message into the public consciousness?  As John Donne pointed out, every man’s death diminishes me – and if he dies because he has been given the message that his life is not worth living, I am diminished already by the devaluing of his life.

I am not seeking to underplay the intense grief of someone who has led an active life and suddenly becomes disabled.  And I know at first hand the grief of a parent whose child becomes disabled – enormous enough when it happens, as in my daughter’s case, at only 9 weeks old, and probably heightened all the more when the child has led an active, athletic life before becoming disabled.  But that is only the beginning of a long story, and this film tries to make it the end.  I cannot say it often enough or loudly enough:  if someone is suicidal, he isn’t suffering from disability, he’s suffering from depression, and the solution is not to kill him, but to treat his mental health.

By contrast, while I was on holiday in France, I went to see a film called Un Homme à La Hauteur.  The story is of Diane, a tall, blonde and beautiful lawyer who loses her mobile phone.  The phone is found by a stranger, Alexandre, who discovers her landline number in the contacts and calls her.  He is amusing and personable, and she likes the sound of him enough to agree to meet him for dinner so that he can return her phone.  When she arrives at the restaurant, Alexandre turns out to be a highly respected and successful architect with drop-dead gorgeous looks… and four feet six inches tall.

She falls for his engaging personality, and friendship inevitably turns to romance.  The rest of the film is about the obstacles they face in getting friends, family and society at large to accept the reality of their love.  Together they overcome prejudice, including in their own hearts, and surmounting the many difficulties, love triumphs.

The film isn’t perfect.  Once again, a deeply unpleasant ex is lurking in the background, perhaps to suggest that if your ex is enough of an ass you might even fall for a dwarf –one of two things that I would say it has in common with Me Before You.  The other is that a small-statured actor was not used to play the part.  Surely they have actors of short height in France?  But the point about Un Homme à La Hauteur is that it doesn’t locate the problem in the small-statured man, but in the attitudes of those around him.  He is given the full dignity of any other human person.

The film doesn’t even treat him with kid gloves – in one scene he piles up a stack of furniture and climbs on it to reach something on the top of a cupboard.  The pile of furniture falls away and he is left hanging by his hands and chin.  His rival walks in and asks, “Traction?” (the word being the same in English and French).  “Laughing at” is not off-limits in a film for a non-disabled character, and should not be off-limits for a disabled one, if everyone is to receive equality of treatment.  But we are more often “laughing with” the character, and so the balance is the same as it would be for almost any lead character in a rom-com.

But crucially, the film does not belittle or dehumanise him for being different from those around him.  I accept that there is a world of difference between being a physically able, active person of short stature and being paralysed; the two films are not presenting exactly the same issue.  But one of them is telling us that a severely disabled life is not worth living, even when unlimited love and untold wealth remove as many as possible of the societal obstacles to living a good life, whereas the other is affirming that we, society, are the problem; the obstacles and prejudices are of our making and it is for us to remove them.

Every time a Hollywood film includes a non-disabled actor playing a disabled character, whose life is portrayed as no longer worth living (I read that there have now been 30 such storylines in major films, someone has apparently been keeping count) the vile message is again rammed home to the worried well that disability makes life no longer worth living, that disabled lives are, in fact worthless, and the best thing “these people” can do is go and kill themselves, preferably leaving a fortune so that someone benefits by their death.

As a mother it’s heartbreaking to be told again and again by this indirect means that my daughter is a burden, that she should not go on living (see here if you think I’m exaggerating that).  As a result people look at her and see only the disability.  But the fierce and loyal love, the exuberant joy and cracking sense of humour that she displays have enriched our lives so much that we are infinitely happier to meet the demands of her care than we would be to have to mourn her passing.  Disabled lives do matter.  They matter as much as everybody else’s.  It’s as much an outrage when a politician mocks a disabled journalist as when he belittles Islam and its adherents.  We need an outcry of voices against this poisonous propaganda, and it’s heartening to see the growing momentum behind the #MeBeforeEuthanasia hashtag on Twitter.

 

A Master-class in disability inclusion

This was originally written for Through the Roof (www.throughtheroof.org) and is reproduced here by kind permission.

“We had a problem at church on Sunday,” someone told me as we chatted at the Big Church Day Out. “A disabled lady in our church was disgruntled because she felt people were ignoring her.  But the thing is, we don’t always want to be swamping her with offers of help.  It’s difficult to get it right.”

I tried to make some suggestions as to how to strike the right balance, but I couldn’t help reflecting on her words after the event was over. On an earlier occasion, a lady had told me, “At church everyone just assumes that any time I ask for help or for prayer it must be something to do with my disability.  But one time I just wanted prayer because my mum had died, and no one gave me the opportunity to say so.”

So how do churches “get it right” for their disabled members? How do they give them enough assistance to participate fully, but not so much assistance that they feel singled out as Exhibit A?  How do they give them an opportunity to say what is really on their mind, and not just assume that it must be disability-related?  How do they enable disabled people to exercise their gifts fully for the blessing of the church?

In this, as in any area of church life, Jesus is the supreme role-model. In Mark 10. 46 – 52 we read,

As he was leaving Jericho with his disciples and a great crowd, Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside. And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!” And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.” And they called the blind man, saying to him, “Take heart. Get up; he is calling you.” And throwing off his cloak, he sprang up and came to Jesus. And Jesus said to him, “What do you want me to do for you?” And the blind man said to him, “Rabbi, let me recover my sight.” And Jesus said to him, “Go your way; your faith has made you well.” And immediately he recovered his sight and followed him on the way.

There are several things I notice in this story. Firstly, a blind beggar sitting by the roadside must have been quite noticeable, especially to Jesus whose mandate, according to Luke 4, was “to proclaim liberty to the captives and recovering of sight to the blind.”  Yet Jesus didn’t make a beeline for him, or draw attention to him in any way.

However, as soon as Bartimaeus learned that it was Jesus passing by, he immediately wanted to attract His attention, and began calling out to Him. And without hesitation, Jesus responded to his call.  We could learn much from this in churches – to treat disabled people just as we treat every other member, without drawing attention to any difference, yet ready at any moment to respond to a request from them.

Jesus did not respond by going to him, helping him to his feet and drawing very public attention to his disability. Instead, He allowed him the dignity of making his own way over, just as any other person would have done.  It would not have been necessary to give him that level of assistance since, as the story makes clear, he was capable of leaping to his feet, throwing off his cloak and making his own way to where he heard Jesus speaking.  We would do well to follow Jesus’ example of respecting people’s independence.

Once he was within speaking distance, Jesus asked him, “What do you want me to do for you?” Jesus’ mission was to heal, and yet He made no assumptions about what Bartimaeus wanted from Him.  Perhaps Bartimaeus might have perceived his own greatest need as loneliness, or financial hardship.  Jesus gave him the opportunity to articulate what he himself saw as his most pressing need.  Only when Bartimaeus replied, “Rabbi, let me recover my sight” did He heal him of his blindness.

And finally, Jesus continued to respect his autonomy after the healing. He didn’t direct him where to go, or tell him, “Now you have an amazing testimony, and it’s your duty to go around witnessing to what God has done.”  Instead, he left Bartimaeus to decide where to go and what to do.  Understandably, Bartimaeus’ decision was to follow Jesus.  Why wouldn’t he stay as close as possible to the one who had respected his dignity and given him the gift of healing?

In our churches, we can learn so much from this. We should be ready and available to help our disabled members, and we should create an atmosphere in which they feel able to reach out to us for whatever they need.  It’s not wrong to ask if help is needed, but it’s good first to give people the chance to decide whether to reach out for assistance.  We should give help where needed and respect independence where help is unnecessary.  We should not assume we know what the person needs, but give them the opportunity to express what it is they are looking for, and we should not assume what gifts they have and how they want to exercise them, but should give them the space and freedom to become all God wants them to be and to follow Jesus wherever He leads.