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

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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.

 

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.

The best and worst of the NHS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Church – what did Jesus have in mind?

My church, having just sold its building in response to a call from God to “walk out to walk on” is in the middle of a conversation about how to be Church in a radically new way.  We want to bring the kingdom of God to bear on the society in which we find ourselves, but to do it in a way that, while retaining the things God has built into us over the years, does not seek to hold on to any of the external trappings of what we have created, of the church we have built perhaps in our own image rather than looking like the Body of Christ.  That conversation is ongoing, and we are still at the place of having buried the seed of the past without knowing exactly what the harvest will look like which springs up in its place.

Jesus had a few specifics in mind when He dreamed of what His church would be.  The details, He left to us to fill in, with cultural variations and allowances for differences of temperament.  But there were a few non-negotiables.

One was that it would be a body of people with the power to bind or to loose certain things in heaven and on earth.  (Matthew 18. 18)  This can be interpreted in different ways, and certainly it refers to our authority in a spiritual realm.  But I think it also has much to do with our interactions with each other, coming, as it does, in the middle of a passage where Jesus sets out how we are to forgive and reconcile our differences.

In particular, I wonder do we loose, or release, the disabled members of our churches?  Do we set them free to be everything God has called them to be?  Do we give them permission to be our teachers, our pastors, our soul-deep friends?  Or do we bind and restrict them?  Do we hold them back, keep them in their place and expect too little of them?  Could it be that in placing restrictions on people here on earth in our churches we are binding them in some heavenly sense, hindering them from developing spiritually into all that God intended when He created them?

Secondly, Jesus made it clear that reaching out to disabled people and drawing them in to be part of the church was an essential element of the Great Commission which He left as a mandate for the church to fulfil.  In Luke 14. 16-24 He gave an analogy of the Church as a banquet to which all are invited, but not all are willing to come. The invitation is rejected by the landed gentry, the respected businessmen, the young and attractive, but accepted by those who cannot see or walk, in order, said Jesus “that my house may be full”.  The Lausanne Committee for World Evangelization estimates that between 90% and 95% of disabled people die without ever getting to hear the Gospel; and yet Jesus says that without them His house is not full.  Surely, whatever church looks like, it has to be intentional about inviting disabled people to play their full part.

But perhaps the most radical thing we could do in shaping the church is to take note of Jesus’ words in Luke 9.48.  I travel to quite a few churches these days, speaking about disability.  The churches who invite us are great churches, keen to be more pro-active in fully integrating disabled people into all aspects of church life.  But there’s something I’ve noticed about most of the churches I encounter (actually most of the churches I’ve ever had anything to do with, including the one I’m a part of and the ones I grew up in).

There’s a kind of unspoken understanding that the people who matter in church are the bishop/priest/minister/pastor or whatever the person exercising oversight is called in any given denomination.  Then come the lay members who are really committed, the eldership or diaconate, those who volunteer to run the church’s activities or take on lay pastoral roles such as visiting ill or elderly members.  Next in importance are the busy people, those with families, who don’t contribute so much because of other commitments, but nevertheless are loyal and turn up most weeks on Sunday.  And the ones who are given least weight are the ones who are seen as contributing nothing – maybe homeless people who wander in looking for warmth on a wintry Sunday morning, addicts or those whose lives are chaotic, refugees who haven’t yet learned the language, and people with profound learning disabilities.

But in Luke 9.48 Jesus says these words: “It is the one who is least among you all who is the greatest.”  I wonder how church would look if we really took that seriously?  If the ones who are relegated to having the least say in church life were put at the centre, with their needs, gifts, vision and ideas seen as the crucial focus around which we design how we do church?

We see Jesus do this again and again – He abandons a busy schedule to touch a leper whom no one else will touch.  He breaks off in mid-stride to come over and speak to a blind beggar whom everyone else is shushing.  He sees his disciples squabbling and selects a small child as the example of the kind of spirit they should display (in a culture where no one pays any attention at all to the opinions or actions of children).  He strikes up a conversation with a woman who is alone because no one else will associate with her, and confides in her the information that He is the Messiah, before He has made this revelation to anyone else.  He interrupts a ministry trip with his disciples to extend compassion to a widowed mother whose only son has died, at a time when widows are the lowest in the social pecking order.

The pattern is so striking and so often repeated that it’s impossible to avoid the conclusion that Jesus really meant what he said in a very literal sense – that those who are considered to be the least among us are, for Him, the greatest ones in the Kingdom, the ones who become central to all that God wants to bring about in the world.  I wonder how our churches would look if we used that as our model?

Open letter to the new Work and Pensions Secretary

On 20th March I wrote to the new Work and Pensions Secretary. I was particularly concerned by the appointment of a man who laboured under the misapprehension that in voting to cut £30 a week from people too sick and disabled to work, he had in fact voted for a cut to the benefits of people who are capable of work.  I was not writing as a political militant but as a concerned mother whose daughter is being adversely affected by the casual, uncaring policies of a government which would rather not have its attention drawn to the pain it is inflicting.  Since he has not yet deigned to reply to my email (and nor has my own MP, Sir Gerald Howarth, to whom I also copied it) I have decided to publish it here as an open letter.

Dear Mr Crabb,

Congratulations on your appointment as the new Work and Pensions Secretary.

I would like to draw your attention to an anomaly and an injustice in both the working of your department and the way it is presented to the public.  Mr Osborne has been able to claim to have increased spending on disability benefits by £1bn.  This is not really true.  If, as in this claim by Mr Osborne, only DLA/PIP is included in this figure, it is possible to claim a cash increase, although in real terms this represents a decrease when inflation is taken into account.  But if all those who were moved from Incapacity Benefit to ESA are included there has been a very real fall in the amount of benefits paid to disabled people.  Cutting a further £30 a week from ESA for new claimants is only going to make this worse, and is based on the illogical assumption that if someone is too disabled to work, adding starvation to their disability will make them suddenly recover enough to get a job.

But much of the spending allocated to disability is being wasted in a manner which is both profligate and discriminatory.  People who have congenital, incurable, degenerative conditions and who were awarded DLA indefinitely, are having to go through the stress and humiliation of a reassessment.  For the second time in a year I am being asked to prove to your department that my daughter has not suddenly miraculously recovered from her congenital quadriplegic cerebral palsy, autism, learning disability and partial sight.  Apart from the immense waste of the time I have to devote to this and the distress caused to my daughter who has no understanding at all of the system, I cannot imagine how much your department is wasting on this ridiculous and futile exercise – money which might, with a little creativity and forethought, have been spent on improving the already very dificult lives of disabled people.

Along with the rhetoric in the media which portrays disabled people as skivers and benefit scroungers there has been a 213% increase in reported disability hate crime, with the unreported figure believed to be far higher, according to the Crown Prosecution Service.  The government has always pretended to distance itself from the language used in the media, but who can forget Mr Osborne’s disgraceful remark about the shift worker “leaving home in the dark hours of the early morning who looks up at the closed blinds of their next door neighbour sleeping off a life on benefits”?  As a result of unthinking, prejudiced remarks of this kind, people severely disabled by reason of conditions such as Myalgic Encephalomyelitis, Fibromyalgia or terminal cancer who cannot bear the glare of broad daylight have found themselves stigmatised and abused.

It is time to end this dreadful persecution of disabled people, and to ask what are their real needs, and how can these be met?  And it is long past time, as Mr Duncan Smith so belatedly recognised, to stop raiding the pockets of disabled people to line the pockets of the well-off.

I hope that as you begin your new job you will take these points into consideration.

Yours sincerely,

Rosamund Bayes