Monday, 22 December 2014

Autism - high versus low? Gee, no.


Extraordinary ideas happened before we understood more about autism.  One of the biggest ideas was that we could all fit into two neat sorts of autism; high functioning, and low functioning.  Depending on whether we could say some sentences and pass a standard IQ test, more or less.

We then had Autism Wars, with some parents clamouring to tell us that their child was Low Functioning and therefore nothing like autistic adults who can talk.  Those adults must be High Functioning, since they had speech, they said.  Lots of people got hurt in those debates.  We still see some happening.  Parents then wonder why autistic adults rarely help to explain about autism, to help those parents.
What I say here is a generalisation, since we’re all a bit different.  We know from the brain science that autism is about our brains being differently connected.  Wiring connects up in unusual ways.  The ‘common sense’ bit of the brain doesn’t function too well for most of us.  Half of us struggle with everyday tasks, whether we can speak or not.  Lots of the ‘low functioning’ people got really offended at being described like that.  Well, would you like being called ‘low functioning’?  The mistake was to think that they could not understand what was being said.  Most can.  In fact, now we have technology like iPads to help communication, it turns out that many of the ‘low functioning’ autistic folk are very intelligent.

We know that autistic brains seem to ‘overheat’ when under sensory and social overload, and need about an hour and a half of quiet to be able to cool down again (literally). We’re seeing this on the brain scans.  More research being done.  We know meltdowns/shutdowns may be connected to this – so autism may be more like epilepsy than temper tantrums or refusal to communicate.  Autistic folk have been blamed for so much that is totally out of our control, alas.
We also know that most of the ‘high functioning’ adults have profound difficulties with some areas of life.  We know that despite ‘being able to talk’ (about our specialised interests…), most are without good employment and have almost no good friends.  Most struggle to build relationships, and struggle to access human rights.  Most struggle to fill in and send off complex forms for benefits.  Some starve to death as a result, right here in the UK.  Most struggle to access noisy/busy sensory-overloading buildings, so cannot access healthcare, supermarkets and other essentials for daily living.  Most struggle with education, with transport.  Many are at great risk of bad outcomes from bullying and violence, from fraud and being conned into breaking laws for others. ("Go into that shop to get me that bottle of alcohol - no, you don't have to pay, it's free today...I'll be your friend if you do", etc. So easy to do with very literal people who expect others to say what's true).

So much for ‘high functioning’. 
Language is no good if you can’t use the right words, at the right time, to convey the right meaning, to the right person, in the right way, about the right things.  With the right eye contact and face expression and body language.  And we can’t.  Too much of our brain is super-fast on data and facts.  And super-slow on working out words for emotions at the right time.  We can feel the emotions...but the words won't arrive on time.  We can’t use or see body language very well.  We cannot pick out just one voice in a crowd.  Those bits of our brains are wired differently.  So we end up accidentally annoying everyone instead of communicating well.  We then get no help, and a lot of very angry people round us….whilst we sit in the middle, trying desperately to say the right thing, and failing.  It’s a world of fear and exhaustion for us ‘high functioning’ people.

Relationships?  Fail.  Job?  Nope.  Friendships?  No way.  Everything depends on timely, well phrased communication.  Just knowing long sentences isn’t it.
And…who decided there should only be two sorts in everyday autism descriptions?  Do they go around assessing people with visual impairment and deciding they can only be High Functioning Blind and Low Functioning Blind?  It’s a sliding scale of how much people can see, and different sorts of blindness.  So it is with autism.  What about wheelchair users?  Are they high functioning if they can speak, and low functioning if they can’t?  Of course not.   They're all wheelchair users with their own individual set of needs.  It’s baffling that this has happened for a brain connection condition like autism.

So, less of the insulting or misleading labels please.  None of us are ‘low functioning’.  None of us are ‘high functioning’ either.  All of us have areas of life in which we really really struggle.   Some have an additional learning disability or other disabilities that make life super-challenging.  I do.  I'm also faceblind, have arthritis, am recovering from cancer treatment.... etc.  Of course it’s more challenging if anyone, anywhere, has lots of disabilities at once.   That doesn’t make their autism ‘low functioning’.  Let’s work together to describe each person’s needs accurately, and get the right support to them and those around them.  That’s the right result.

 

Friday, 28 November 2014

Disability is a Moral Issue


I was told earlier this week that disability isn’t a main moral issue for the Church of England.  And that's why it’s not included in the big faith debates about diversity and the future of the church.

I’m going to disagree. 

I’ve worked for, and with, the Church of England for a very long time.  I’m the author of the main guidelines for autism for it.  I’m the co-author of the national domestic abuse policy for the church as well. I also work nationally and internationally with many faith leaders.   I’ve worked through moral issues around disability for a good few decades.  I’m autistic, faceblind, have arthritis and a spinal scoliosis, somewhat dyspraxic, have had crippling anxiety and periods of depression caused by life’s circumstances...and have had an interesting time with breast cancer.  Most of my friends and family are disabled.  It has been my honour to work with hundreds of fantastic disabled and non-disabled people, especially in churches and faith communities everywhere.  So I’ve a fair understanding of the issues.  I don’t pretend to speak for anyone but myself, but I can say what I’ve seen, heard, felt and been told over the years.
I'll start by saying there are many fantastic faith leaders and faith communities.  Caring, loving, gentle, generous places.  My own local church is one such.

I’ll also say this with confidence:  A good few Christians tend to force disabled people into one of many artificial and often-horrific roles.  I’ve been put into each of these by some Christians.

As sinner who is being punished by God, and therefore deserves their disability.

As a person who is lacking in faith.  After all, “If you had enough faith, you’d be cured, wouldn’t you...”.  And if they lack faith, they'd better leave the church before their faithlessness contaminates others...

As a person who must trust God and therefore does not need pills, potions, surgery etc.  How many have been made very ill by this kind of thinking?

As a person who is beset by evil spirits who need to be driven out of them by exorcism or ritual.    One group sat on the child to drive out the demons.  They died.  Yes, a Christian group did that.  Here in this country, yes.

As a person to whom God has given the special privilege of suffering for others.  Suffering is seen by some as an especially good thing, to be encouraged and prolonged  - a sort of sacrifice on behalf of others.  Especially good to suffer a lot in the lead-up to death, apparently.  Hmm.  I think not.

In the case of autism or learning disability, quite often the person is seen as ‘an angel’, a special virginal character who is some sort of spirit child, not a real person with wants and needs.  A person to be kept ‘on a pedestal’ and not allowed a life of their own.

As a burden on the church; someone unable to be of any good use to them, who is just a cost to their time and money.  Eyes roll at the very thought that they would be allowed in.

As a danger to the congregation; someone who may act in ways too dangerous to include them.  (Disabled people are no more likely to be dangerous than anyone else, in fact).

As easy targets for bullying and abuse by some.  We’re only just bringing some of the cases into the light.  They do not make for easy reading.

Against this patchy backdrop of theological drought and moral bankruptcy,  a few of the debates:   Pregnant with a baby who has a disability and will suffer intense pain and hasty death?  Some Christians want the parents to consider the unborn baby’s soul, or be told they are murderers.

Want to get married as someone with a learning disability?  Some Christians want to be able to say whether that can happen in a church or not.  ‘People like them can’t have sex, surely!  Yuk!” (to quote something I heard).

Want to get Confirmed, and you are autistic or have a learning disability?  Some Christians want to have a say in whether you can understand God well enough, or whether they can turn you away at the door.

LGBTI issues?  30% of autistic people self-identify as part of that group.   That’s about 300,000 in the country.  We’re not talking about one or two people.  How’s that for a big impact on the debate around LGBTI and the church.  Oh wait, we’re not allowed to contribute to most of it, because...autistic.

These are moral and ethical issues.  These are huge, profound issues.  Not least for the millions of disabled people who are routinely and thoughtlessly excluded from church.  14% of the population are disabled.   Not people in care homes; people right there as your next door neighbours.  People who want to attend weddings and funerals alongside others.  People who want to be at the church fete and the concert.  People who want to be friends and colleagues, workers and volunteers.  People who want to be Priests and leaders.

What is our response as a church?   Not even half of our churches have a simple hearing loop to allow those with hearing aids to join in, for example.   Big print hymn book?  Not even half have that.  It costs a tenner.  What’s going on here?  That's not 'too expensive', that sort of thing.  It's not that.

Jesus spent his whole Ministry around, and with, disabled people.  Arguably he had at least one disabled follower whom he never cured.  He was so respectful of them.

We know that disabled people offer amazing diversity of talent, love, prayer, friendship, finance, gifts – in fact all the very same things that all people offer to a church.   We know that many have insights and experiences that add hugely to our understanding of God and of our faith.  We know that in Jesus’s parable about the man who invited the rich to his banquet and found they didn’t want to go... the people were told to go and get the disabled folk off the streets and give them a full banquet instead.  Not a crust of bread bounced off their forehead as they stand outside in the  street.   Invited in to the full banquet. 
Where is our full banquet for disabled folk right now?  It’s certainly in some of our churches.  But what of the others?  

Is it enough to say, “Disability is not a main moral issue” and to remove it from current discussions around diversity or the future of the church?  I do not believe that it is.  It is certainly true that very few disabled people are allowed to serve God.  And those who wear the vestments of Priesthood wield extraordinary power over who gets through those church doors.  One doesn’t have to sit in a pew, alone in that aisle, ignored by the congregation and the Vicar, for long ...before understanding that ‘All are welcome’ is a very hollow promise indeed in some of our churches.  Many are fabulous, of course.  Don’t get me wrong – I am honoured to have many wonderful Priests as good friends.  But there are others who patrol their church gates like guards who see us as the enemy of God.  It's soul-destroying stuff.  Quite literally.

So how we do create that listening, welcoming, learning environment we need – in our theological colleges, in our congregations, in our home groups and our outreach?

We are not caricatures of people, nor symbols of something broken.  We are real, living, breathing, laughing, joking, loving, caring friends, who live with a disability. 

It’s not enough for anyone to say that we don’t belong at the table, with that same full banquet.

Disability is a moral issue.   Let’s start talking about it more.

Thursday, 6 November 2014

Vulnerable Adults: Offering the love of God in safety? Or nervous claim-avoiding?


As a church, we are called to be Good News to all.  On that I think we all agree.  Bringing the love of Jesus within closer reach of each and every person.

Our Priests and teams serve their congregations with great care and faithfulness throughout the country.   Most do a truly excellent job, with limited resources and great effort.

We have polices on safeguarding, for example https://www.churchofengland.org/media/37405/promotingasafechurch.pdf

Here’s some extracts from it, about how to treat a Vulnerable adult.

“Helping in such a way as to maximize a person’s independence. People with additional needs can and do lead active and fulfilled lives but some may need support and resources to do so.

Always respecting the person and all their abilities. 

 Recognizing the choices people make even if they may appear risky.

 Giving people the highest level of privacy and confidentiality possible in the circumstances.

 Including everyone in decisions affecting their life.

 Creating an environment within the Church that can include everyone.”

 All good.

And now the not always so good. This for ordinary everyday meetings – not ones where someone has alleged abuse etc:

“Church workers should be aware of their language and behaviour. For example, innuendoes or compliments of a sexual nature are always inappropriate.
The place of the meeting, arrangement of the furniture and lighting, the  worker’s dress;
The balance of privacy for conversation with the opportunity for supervision  via open doors or windows in doors, another person nearby;
The physical distance between people determined by hospitality and respect, being aware that someone may have suffered abuse or harassment in the past;
Whether the circumstances suggest a professional or social interaction;
The propriety or danger of visiting or being visited alone, especially in the evening;
The personal safety and comfort of all participants;
Establishing at the outset the nature of the interview in respect to subject matter, confidentiality and duration;
The appropriateness of initiating or receiving any physical contact, for example gestures of comfort, which may be unwanted or misinterpreted.”

 Now if you’re a church worker, that might all sounds like a sensible plan.  After all, we don’t want any court cases, do we.

If you’re a Vulnerable adult, encountering this sort of , ‘I’m afraid to be ordinarily jokey with you like I am with everyone else; I need to make sure others have line of sight of us in case you  allege something’, guidance, it is horrible beyond words.    Trust me, it is.

 Absolutely no-one wants their church team members to be afraid of dealing with them.  To be wary of saying or doing normal everyday things.  To be reluctant to put out the safe and consensual hand of comfort on a shoulder that they would offer to anyone else.  To be talking about nothing more challenging than the state of the weather with you or the vague location of the last family holiday, in case the conversation is deemed too risky or too personal.  

How would you like to be singled out to have to talk about confidential matters in front of an audience, so the church worker can have witnesses?  Would you feel valued, or like a criminal?

I’ve had all of this in the past.  And actually it’s not OK at all.  I don’t want to be in a church that treats me as a walking court case waiting to happen.  I don’t want that for anyone else either.  Very blessed with many clergy friends who know how to be ordinary everyday friends.  Real good news.

AND behaving in overly formal ways does not stop one single actual predator from targeting even one vulnerable adult.  They don’t take any notice of the rules anyway.  They know every way round that. 

So, what is it we are trying to say to those who are every bit as loved by God as the others in church?  What message are we bringing to those who place their trust in our teams? 

Being watchful for predatory behaviour and able to act to help prevent it  – absolutely.

Not groping, or making rude sexual remarks to someone to embarrass them in some nasty way?  I agree.  But... what of when they are equal cheery partners in the most gentle of  ‘carry-on film’ style joke and are used to thinking of the other person as a friend, not as some formal Assessor of Their Christian Behaviour? 

Talking to us in Formal Vicar Voice about Appropriate Topics with an appropriate number of witnesses?  No thank you.  Jesus wouldn’t have done that.  I don’t want church leaders doing it either.  It’s not appropriate at all.  It's just demeaning for us.

Jesus wasn’t just talking to clergy when he said that he called us all his friends.  He meant adults who may be Vulnerable,  too.  So, be kind friends. No-one should pretend to offer caring, when all they’re offering in reality is minimisation of risk to themselves.

There’s a fine and important difference between those two things.  Think really carefully about which it is you want to demonstrate to those who may be Vulnerable.  Because we who are those Vulnerable Adults can tell the difference.  Honest we can.  And there’s no need for us to be in a church to receive formalised court-approved behaviours from those in charge.    That’s not what our faith is about.  It never was.

Do I want to make it easy for predators?  No, of course not.  Let me be quite clear on that.  I've spent a lifetime working very hard indeed to help very vulnerable people stay safe.

But turning all of our church friends into people often too scared to be with us does not make our lives safer.  It often leaves us more alone and more vulnerable than before. 
I hope that is understood.