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.

 

 

What price a child’s life?

Today marks the first anniversary of the day when pictures of a drowned toddler shocked Europe and somehow brought to people’s consciousness that the people flocking in desperation to our shores are not swarms or hordes or any of the other disgraceful words our politicians and the media have used to describe them, but precious individuals, many of them tiny children.  What has happened since then?  Not a lot.  Lord Dubs has made valiant attempts to get our government to face its responsibility to the unaccompanied children around our borders, especially those who have the legal right to rejoin family in the UK.  But all he has succeeded in eliciting is empty words from politicians who, although they are supposed to be public servants, have no conscience whatsoever about forsaking their legal and moral duty, and ought to be ashamed of themselves.

Today is also the day when many leaders of different faiths in this country came together with members of their congregations to gather in central London and protest about this lack of action.  They handed to Amber Rudd, the Home Secretary, a list of the names of 387 children who are stuck in Calais despite being eligible for asylum in the UK.  Some have perished trying to get here on lorries, a tragedy as well as a moral evil when they have the right to come here safely and legally.  I have made two trips to Calais and seen the appalling sub-human conditions for myself.  I would have been more often if family caring responsibilities had permitted.  But if I cannot go, at least I can add my voice of protest to the growing chorus of those who want to see this country do the right thing and welcome the refugees in keeping with its long and proud traditions which the current generation of politicians appear to have forgotten.

Once upon a time a purportedly Christian regime waged war against Europe’s Muslims in the Balkans.  In Kosovo the onslaught was particularly ferocious, and large numbers of ethnic Albanians living there were forced to flee and seek sanctuary elsewhere in Europe.  As a result of this, Europe’s leaders got together and decided they should have a plan in case there should ever be another large influx of people into the countries of the EU.  The outcome was EUR-Lex – l33124, a directive allowing for temporary protection in the event of a mass influx of displaced persons.  This piece of legislation provided that if ever there should be another mass influx of displaced persons into the EU, they should be distributed fairly between the EU countries and given temporary protection and shelter, and only once this had been done would the process of establishing their refugee status begin.  Those found to be genuine refugees would then be given asylum until it was safe for them to return home, and those who did not have a genuine asylum claim would be deported.  Problem solved.  Or would have been, at least in the interim, had not the EU decided to tear up its own law book, disregard the directive that had been put in place for exactly this eventuality, and watch as thousands upon thousands of people in need of temporary shelter perished in the seas around our coasts.  What, we could ask, is the point of the EU if it can simply disregard its own laws when it happens to feel like it?

Another proposal was subsequently put forward, I’m not sure by whom.  Perhaps it came from the UNHCR, I don’t know.  This was a suggestion that people should be allowed to apply for asylum at any EU embassy anywhere in the world. Their claims could be processed while they were in situ, and if successful they could travel safely and legally to the country that had accepted them.  This would actually have reduced the numbers of people arriving in Europe, because those whose claims were rejected would realise it was pointless to travel to Europe because they would simply be deported on arrival.  Such a simple idea, and one that would have saved thousands of lives.  So why was it not implemented?  Why would our politicians rather that our shores were awash with hapless corpses than that genuine refugees be given asylum?  I can find no answer that doesn’t involve insanity.

Other measures would also have made a difference.  Daesh is buying and selling weapons, exporting illegally-gotten oil and running a racket in human trafficking, especially sex slaves.  Somewhere in the world there are banks laundering all the tainted proceeds of this of this activity.  They should be pursued, prosecuted, closed down and their assets seized.  And war can happen only when an area is flooded with arms.  If we had an international agreement to stop selling arms to the region, or to anyone who would sell them on to the region, the conflict would burn itself out for lack of fuel.  So why are these very obvious measures not implemented?

I fear the answer lies in some of our politicians and their close allies being so tied up in the banks in question and in the armaments manufacturers that they would rather protect their own assets than save human lives.  I am not pointing the finger at any politician in particular.  I have no way of knowing who is or isn’t implicated.  But I do know this: politicians who are regular attenders at church and who call themselves Christians should remember the words of the Christ they claim to follow:  “Whoever receives one such little child in my name receives me”.  And, “It would be better to have a millstone hung around one’s neck and be thrown into the sea, than to offend one of these little ones.”

On the Kindness of Strangers

We took a family trip away last weekend – myself, my youngest daughter and my middle daughter who, as regular readers of this blog will know, has complex multiple disabilities.  We had a great time, but it was made even better by the kindness of two strangers. I don’t suppose I will ever see them again, and I have no way of letting them know what a difference they made, so the next best thing I can do is send my thanks out into cyber-space.

The first time was when we were in a seaside arcade.  Normally this would be a very challenging environment for my daughter to cope with, but she had spotted an arcade machine with a model of Big Ben in the middle and with the Big Ben chimes playing, and the Big Ben chimes are one of her very favourite things in all the world.  So she asked to go into the arcade.  It was hot, noisy and crowded, with flashing lights everywhere you looked.  But my daughter was able to shut these things out, as she was single-mindedly focused on the Big Ben machine.

We stood by the machine and found a few 2ps for her to feed into it.  The lady standing at the next section of the machine had a win, and along with her 2p pieces out came a tacky, cheap keyring which consisted of a tiny skateboard with flashing red and blue lights in it.  She turned to us and asked if my daughter would like it, before handing it to her.  My daughter put it on her lap and turned it over with her one good hand, closely examining it.  She then picked it up and held it to her ear to see if it made any noise.  She was so absorbed in it that all our prompts to thank the lady fell on deaf ears and we had to say thank you on her behalf.  Finding that it didn’t make a noise, she put it down on her lap and turned her attention back to the Big Ben machine.  The lady turned and walked away, probably thinking that her gift had not been as well appreciated as she would have liked.

I wish she could have seen my daughter a little later, away from the hot and noisy arcade.  She examined the keyring again and discovered a switch on the bottom.  She was able to manipulate it with her thumb, and found that she she could turn the red and blue lights on and off at will.  This fascinated her, and she sat for quite some time happily switching them on and off, and then took it home with her after the weekend.

I wish I could let that lady know how much pleasure it eventually gave her, and that I was grateful for her generosity.

The second incident came the next day.  We had taken my daughter swimming, and with the help of the poolside hoist, we were lifting her out of the pool, I in the pool seeing her safely up out of the water, and my youngest daughter on the poolside to receive her as she came up.  Once she was safely in my youngest daughter’s hands, I turned and walked to the pool steps and climbed up out of the water.  By the time I returned to where the hoist was situated, my daughter had been lowered into her wheelchair, still with the hoist sling around her, and my youngest daughter was attempting to remove the sling, but she was not alone.  A passing lady had come over to see if she could help, but, wonder of wonders, instead of asking one of us if she could lend a hand, as most people would have done, she walked right up to my daughter in her wheelchair and asked her if she would allow her to help us get her out of the sling.  My daughter nodded enthusiastically, unused to being addressed by strangers.  Between the three of us we got her out of the sling and comfortable in her wheelchair, and then our kind helper disappeared before we had a chance to say more than a fleeting thank you.

But if I could speak to that lady again, I would like to tell her how very much it meant to see someone approach my daughter and address her as the intelligent human being that she is, instead of talking over her to us.  It was heartwarming and sadly rare to see a stranger respect her dignity in that way, and left all of us with a warm inner glow.

So, to those two people whose actions touched our hearts last weekend, I would like to say a heartfelt thank you, and God bless you.

#MeBeforeEuthanasia

tablets

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.

 

All you need is love

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

I love the way that Jesus approached people, as recorded in the Gospels. He didn’t overthrow convention just for the sake of it, but nor did He allow Himself to be bound by convention when love demanded a different way.

For example, when the synagogue leader came to plead with Him to heal his daughter, Jesus treated him with the respect due to someone in his position, stopped what He was doing and went with him. But when a woman touched His cloak in search of healing and tried to slink away unnoticed, He knew how important it was to affirm her, to show her that she mattered to Him, and to commend her faith. And so the synagogue leader was kept waiting; the deference due to his position was placed below the dignity of a mere woman, and a woman who was an outcast at that.

When Jesus was welcomed into the home of Lazarus and his two sisters at Bethany, He not only indicated that He didn’t consider a woman’s place to be in the kitchen, but He even encouraged the women to sit at His feet to listen and learn as equals with the men, something no other rabbi would ever have countenanced doing.

When the paralysed man was lowered through the roof down to where Jesus stood, the whole crowd waited expectantly for Jesus to pronounce words of healing, but at first he didn’t do so; He began by addressing him with a word which the New Testament writers translated into the Greek as “ἁνθρωπη” (“anthrope”) – a word denoting “human being”. In front of the whole crowd, Jesus affirmed the paralysed man’s full humanity. Next He spoke of forgiveness of sins, a prerogative that belonged to God alone, and only once that supremely important business was dealt with did He turn His attention to the physical cure the man was seeking.

When His disciples were criticised for picking and eating grain on the Sabbath, He pointed out that the Sabbath was supposed to be something people benefited from, not the other way round. When His disciples came and told Him the Pharisees had been offended by something He said, He dismissed them as blind guides trying to lead others, and falling into a ditch. When, in the middle of His sermon, someone shouted out, asking Him to settle a dispute, He didn’t tell them to either sit down and shut up or leave. Instead, He used the interruption as an opportunity to address the problem of materialism.

It wasn’t that He had no time for tradition, position or custom, but simply that these things always had to give place to whatever His Father wanted Him to do, which was always to love in some practical, life-transforming way.

As churches we can perhaps be too wedded to our conventions to see when God is doing something different. I heard a while ago about a young autistic man who called out three times in church, “Jesus is Lord!” and after the third time, his family were asked to remove him. That kind of exuberant shouting in the middle of the worship or the sermon didn’t fit with that particular church’s convention of how Sunday service should be conducted. As a result, a family felt sidelined and rejected. I can’t imagine anyone going away from an encounter with Jesus feeling like that.

By contrast, on a recent Sunday morning my church was meeting in an unfamiliar building, with not the usual person leading the meeting, and instead of starting with singing, we began with an activity focused on helping the children to think about how God speaks to them. For my autistic daughter, Ellen, this was a lot of change to process all in one go. Eventually she couldn’t contain herself any longer, and leaning forward in her wheelchair and pointing at the speaker, she shouted, “Excuse me, man! Excuse me, man!” As soon as he looked her way, she continued, “There will be worship songs!”

No one asked us to leave, no one tried to quiet Ellen, or tutted at me for not keeping her under better control. Instead, the speaker said, “We’ll see, let’s finish this activity first and then we can talk about that.” And once the activity was over, and we started to move into something else, another member of the congregation stood up and said, “I want to respond to what Ellen said to us at the beginning, and while we’re doing this, I’m going to go and sit at the piano and play some worship songs.” And he did so, with the result that the morning’s activity, which for once didn’t involve singing, was able to proceed as planned, but Ellen’s need to hear some worship music was also met.

In my last blog post I put out a plea for us to learn from the Master Himself how to approach our disabled brothers and sisters. And here, I believe is another way we can learn from Him. Conventions can be important. They can ensure that events run smoothly, that people are respected, that order is maintained. But they should never override the supreme command which Jesus left us, to love one another. We’re not called to go round rubbishing people’s traditions or ways of doing things, but whenever there’s a conflict between doing things the way we’ve always done them or making room to give love to someone, especially to a disabled person whose needs may differ from other people’s, love should always triumph, just as it did in the ministry of Jesus.

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.