The King is in the house…. or not?

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

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

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

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

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

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

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

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

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

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

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

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

 

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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