Thursday 17 August 2017

Let's talk about Harmful Ablesplaining and Autism

Ablesplaining.  In which some non-disabled people tell disabled people about what disability is and isn't.  About what we should and should not be feeling, or experiencing, as disabled people. Presenting themselves as The Experts.  Talking over the top of our experiences, discounting them, minimising them.  Presenting us as weak, incompetent, malicious or otherwise if we say that their explanations are not correct, or their conduct is dangerous or inappropriate.

A few months ago, I went to a conference about disability.  It was held in a well respected centre.  A well known author was the conference leader.  This leader is not disabled.  They have an autistic person in their family.  There is no need for names here, because this is a situation where I and others talked directly to the group concerned, and are working to sort it out. It is one example out of many, from my own experiences, and that of many others.

For several hours, we were told incorrect or negative things about autism/disability.  Using the autistic young person's photo and name.  Without their permission, it seems.  Disabled people were described by a participant as 'evil'.  That went unchallenged by the leader. The sensory environment was hell for some of us, when a simple bit of alteration could have sorted it out.

I soon became non-verbal and in a fairly 'shut-down' state.  Other autistic individuals in the room were likewise distressed or angry.

It took me a week to get myself OK again.
It took one of the other disabled participants more than a week, and they were physically ill during much of that from the stress.

When we raised our concerns with the chief of the well-respected centre, we were told that there were a variety of opinions, and some enjoyed it.  

It's not OK.

There is never a need to put solely a non-disabled person on stage to 'ablesplain' disability to disabled people.  One should look for respectful co-working.  One should find disabled people to be the experts also.

There is never a need to present incorrect information to an audience, and then describe it as a different point of view.  No, it's just incorrect.

There is never a need to run a disability conference without taking account of good, clear, existing materials on how to make it disability-accessible for most people.  No hearing loop.  No large print. Flickering overhead lighting.  Why? Those are basics.  Absolute basics.

"Oh, those disabled people are just looking to make trouble".  No, we're looking to be able to survive from one day to the next, without being made ill.  Able to go home and look after our families, many of whom also live with various disabilities.  And we'd like to pay a good sum of money for something we learn from, and benefit from.  Not something which floors us.

Quite simple, really.

There are plenty of allies out there.  People who are not disabled, but who are respectful.  Who ask.  Who listen.  Who learn.  I am hugely honoured to share life with them.  People who share the stage with us.  People who use their own voice to amplify ours, to point to us, to include us.

But goodness me, there's some attitudes out there that belong in the distant past.  

If you are running any sort of disability conference, who are your speakers?  Are they disabled?  Are they working with people who are, in really respectful ways?  Are they doing/arranging a proper check of environment, to make sure the basics are there?  Are they checking that individual needs beyond those basics have been considered?

It's not good enough to say 'Well, other people enjoyed it', if many of your disabled participants are left ill and in distress.  At all.

Thank you for listening.

The photo shows a white middle aged man in a red sweater, saying, "I'm no expert, like you are, but let me explain in any case".

Saturday 12 August 2017

Inclusion - a core Christian value - guest blog by Bishop John Pritchard

The Church at its best is a place where all are welcome, nobody is perfect, and everyone is gifted. I know it doesn’t always seem that way but that’s only to say that Christians, not surprisingly, fail to live like their Leader (‘I love your Christ,’ said Gandhi, ‘but I hate your Christians. Your Christians are so unlike your Christ.’) 

But let’s stick with the vision. The Church tries to live in the spirit of this piece of doggerel: 

He drew a circle that shut me out,
heretic, rebel, a thing to flout.
But Love and I had the wit to win.
We drew a circle that took him in.

Churches aim to be places where anyone at any stage on or off the spiritual journey can feel at home and know they’ll be taken seriously, whether devout believer or someone putting the smallest toe in the water of faith. If the church becomes a gated community it has ceased to follow Jesus’ unfailing practice of inclusion and has instead become a sect - which is what happens to any group that sets up tight boundaries of admission and acceptable behaviour. 

The former Archbishop of Canterbury, Michael Ramsey, wrote: ‘The glory of Christianity is its claim that small things really matter and that the small company, the very few, the one man, the one woman, the one child, are of infinite worth…. The infinite worth of one is the key to the Christian understanding of many.’

You can see where this conviction comes from. It’s there in so many of the stories of Jesus whose radical inclusivity threatened the religious and political establishment of his day. Take his treatment of the ten lepers in Luke 17. The background of course was a very stratified society. The combination of Roman rule and Jewish culture had a profound impact on Palestinian society. The Roman Empire promised peace, security and a pay cheque at the end of the month - unless, of course, you were a slave, in which case you had virtually no rights. And unless you were a small farmer, who couldn't keep up with taxes and had to sell your land to wealthy landowners, and then were in their power. And unless you were a woman, in which case your duty was to marry by the age of fourteen and produce a clutch of children. After all, the first prayer in the Synagogue said 'Blessed art thou, O Lord, who has not made me a woman.'
So all was well in this society unless you were a slave, a small farmer, a woman – oh, or a Samaritan or a Gentile. This unfortunately put you beyond God's blessing, which was intended just for the Jewish people, as God had made abundantly clear in the forty years of arduous training in the desert and in the 'shock and awe' invasion of Canaan. God was a jealous God. So all was well, unless you were a slave, a small farmer, a woman, a Samaritan or a Gentile – or a tax collector (and so in the pay of the Romans and clearly taking a sizeable rake-off). That made you a hate-figure. And it didn't pay to be a prostitute, either, because you endangered the whole people before God. Even your tithes would not be accepted, so unclean were you to the righteous (= self-righteous). Otherwise all was well – except of course for the unclean, which meant lepers, women with normal or abnormal bodily emissions, women after childbirth, or anyone who had been in contact with a dead body. Oh, and those with mental illness and disabilities. 

By the way, there were a few others who had a problem with the settled social order, that is, the ten per cent of people who failed to show up on the radar at all – day labourers, beggars, outlaws and robbers (sorry about that). So all was well in this ordered imperial/Jewish society unless you were a slave, a small farmer, a woman, a Samaritan, a Gentile, a tax collector, a prostitute, unclean, mentally ill, disabled, a day labourer, a beggar, a robber or an outlaw. 

The glorious thing about Jesus was that he simply refused to play this game. He undermined it at every point, going out of his way to include all these social rejects and indeed to give them pride of place in the social demography of the Kingdom. Lepers were one such group. They kept their distance, living in colonies on the edge of towns, near the main routes so they could beg, but not so close that they would be offensive.

It often seems as if our society looks on people with physical disabilities or mental health problems either suspiciously (making fallacious links between, for example, autism and certain forms of anti-social behaviour) or, alternatively, condescendingly (as in ‘does he take sugar?’) Society doesn’t invite such people to its parties – they get left off our lists. But unerringly they’re drawn to Jesus. People who are excluded often recognise the one who ‘drew a circle that took them in.’

And so it was that the ten lepers made their way to Jesus. They knew that Jesus broke the rules that paralysed Palestinian society. He spoke to the wrong people (women, Samaritans, Gentiles, children, outcasts, foreigners, sinners) in the wrong places (parties, in the street, ordinary people’s houses) at the wrong times (the Sabbath for example) in the wrong way (without involving the priests). It was quite a charge sheet.

But these lepers were drawn to Jesus. They knew who would take them seriously. I dare say the Big Issue sellers have the same instinct. 

This time Jesus got at least one thing right and he told the lepers to go and get their healing signed off by the priests. Jesus was recognising that healing had a social dimension to it as well as a physical one. Indeed, being accepted as a full participating member of society is a profoundly healing experience. Desmond Tutu was just a child when he went to hospital with his mother. As they walked down a corridor a tall white priest who they didn’t know came towards them. They made space for him, but he raised his hat out of respect for Tutu’s mother. Young Desmond was amazed; he had never seen a white man show any respect for a black woman. It made a deep mark on him - the prophet of justice and freedom was being formed. As theologian Hans Kung said, ‘The Kingdom of God is a healed creation.’ Healing has a social dimension and the way we include those with differences of ethnicity, gender, sexuality, religion, mental or physical make up etc., is a crucial part of the healing of individuals and a decisive element of a healthy society.

Extraordinarily the lepers set off – even though they hadn’t yet been healed! It was only as they were heading for town that they found that their leprosy was clearing up. The thing was, they trusted Jesus. He had a connection with them that was deeper than conventional social mores. They knew they mattered to him and had a distinct identity and value. It was so much more than they usually got. 

Then there was another twist in the story. One of the (former) lepers peeled off and returned to Jesus and threw himself at Jesus’ feet to thank him. And this man, note, was a Samaritan and therefore doubly a reject. Proper Jews had nothing to do with Samaritans; they couldn’t even worship on the proper mountain for heaven’s sake! But here was this outcast coming back, the only one of the ten, because he realised that being healed was something deeper than merely being cured. He saw that wholeness was different from fixing a body. At some deep level he recognised that wholeness is a complex network of factors to do with body, mind, soul, relationships, social acceptance and so on. It was that wholeness he had come back to thank Jesus for.

Jesus now completed the process. ‘Go on your way,’ he said; ‘your faith has made you well.’ The deepest healing that day was of one leper encountering the unconditional love of God, love in its pure, uncut form, and being transformed.

I once met a woman in her mid thirties. She was very small and used a wheelchair. She’d lost her sight, mainly because of ineptitude and neglect in her childhood. She was also recovering from cancer. She’d started a degree and happily met a man on her course whom she married. Tragically he died just a few years later. Nevertheless, this young woman was full of vitality and good humour. Indeed she seemed to me to be one of the most ‘alive’ people I’d ever met. Her faith had made her whole, that and her indomitable spirit which was, in turn, fed by her faith. She knew she had a place in society because she had a place in the Kingdom as a child of God. He drew a circle that took her in.

The Church has struggled to embody the radical inclusivity of Jesus just as any institution struggles to maintain the charism of the founding vision. As the Church adapted from being a movement in the hearts of men and women to being a religion with an established place in society so it had to set up structures to ensure its viability and sustainability. It’s hard to hand on a movement to the next generation; you need a recognisable framework of belief and belonging. But that’s when the trouble sets in. People start to defend boundaries and set entrance criteria. They construct ever more complex and restrictive standards of behaviour, seeking to demarcate the distinctiveness of the institution and maintain the purity of the original vision. 

The walls grow higher and higher, the language of belonging ever more arcane. The end result is the tragic denial of the central message of the Founder that we are all reconciled to God and to each other. ‘The wall of division has been broken down’ (Ephesians 2.14). ‘You are all one in Christ Jesus’ (Galatians 3.28). ‘For freedom Christ has set us free’ (Galatians 5.1). The quotes can be multiplied over and over again.

The seeds of a new world are all there in the title deeds of Christianity but it often takes time for men and women to catch up and realise what gold they have in their hands. Sometimes, as with the abolition of slavery, it’s as if there’s a slow burning fuse that takes many centuries to come to its ‘kairos’ moment, and only then is it realised that the old building of beliefs has been gutted, stripped and is derelict inside. It doesn’t need an explosive device; all it needs is a push and it’ll collapse.

Sometimes society is ahead of the Church; sometimes the Church is ahead of society. But in either case, whether recognised or not, the life and teaching of Jesus is very often the inspiration behind the forward movement of social thinking. The inclusion of every person, whatever their race, religion, sexuality or disability is one such movement. As ever, Jesus was way ahead of his time.

A young man in his twenties wrote in a Sunday newspaper about his very disfiguring disease of neurofibromatosis. He said: ‘I kind of got used to the bullying, and people staring at me. I almost felt like shouting: Bring it on! C’mon, what have you got? The more people stared, the more I rebelled. I was fighting fire with fire. The only place that didn’t happen was at church. I know this is going to sound like a cliché, but when I walked into the church it was the first time that nobody seemed to care what I looked like. Initially I went there to do a bit more rebelling, but everybody was so warm, friendly... I don’t go around shouting it from the rooftops, but I’m a Christian.’

That church was true to its Lord. They had drawn a circle that took him in.

+John Pritchard

The picture at the top shows a woman sitting on steps.  Around her an empty space.  Beyond that, a circle of others, all chatting with one another, but not with her.
The picture at the bottom is one of Bishop John, who was Lord Bishop of Oxford and commissioned the autism guidelines for the Church of England, written by me in collaboration with many fine others.  Bishop John continues to offer wisdom and retreats, amongst other duties and skills.

Thursday 10 August 2017

Autism versus OCD

Many autistic people have been potentially misdiagnosed with OCD ("Obsessive Compulsive Disorder") during their lives.

It does not help that autism is often described as having 'obsessive' behaviour.  Let's look at that, first.

Autistic people may become extreme specialists.  Thank goodness for that.  Society needs extreme specialists.  People who test things to destruction to make sure they work first time, every time.  People who become world experts in a topic.  People who have fine-tuned senses of hearing, sight, touch, taste etc, until they can detect the smallest hints of danger for a community.  These are not obsessions.  They are passionate interests with amazing focus.

Autistic people may also use repetitive movement to be able to find our bodies.  To know where they are, in relation to other things.  Some use repetitive flapping of hands or fingers in front of eyesight, to help them judge distance to objects.  These are not obsessions, they are adaptations to cope with sensory difference. 

Autistic people may well collect things and put them in specific orders.  Testing logic, shape, pattern.  This is not obsession.  This could be art.  It could be science.

With OCD, it's about fear.
"If I don't re-test whether the door is shut, there could be disaster."
"If I don't wash my hands, there could be germs, and that could be disaster."
"If I step on the cracks, I could die."
"I might harm someone. Suppose I do?  It doesn't make sense, and I don't want to, but suppose I do? Oh my goodness, suppose I do?"
"What happens if I haven't written something polite and it's actually insulting.   I'd better re-check.  Again.  And again.  And again.  And again.  Oh goodness me, just supposing it's wrong.  I'd better check, again.  And again."

It's terrible sickening fear.

The two are not the same.
One is adaptive, often a source of immense joy/pleased focus and increased sense of security.
The other is immensely damaging and exhausting, and not something anyone would want.

A person could be autistic, and have OCD.  But people need to be careful, as professionals, not to confuse the two.  

Good questions, and good observations, are important.  Because treating autistic people with techniques and medication designed for OCD is not a good thing.

Saturday 5 August 2017

When others having the same safety as you becomes 'politics'

A charity asked its staff to wear a badge supporting and welcoming a marginalised group. The LGBT+ community.  Some people got really angry about this.  They said this was about forcing staff to wear a political symbol.  And nothing at all to do with being anti-LGBT.

Is it?  Imagine these...

"I'm not anti-women, but I think wearing a badge supporting women's equality isn't something that should be forced on people. That's political.  I don't do politics."

"I'm not racist, but I think wearing asking people to wear a badge supporting (say) Black equality is wrong."

"I'm not ableist, but I wouldn't wear a badge saying disabled people should have equal rights.  That's political, and I shouldn't be asked to support other people's politics".

"I wouldn't wear a badge saying children's rights needs to be better looked after.  We all know what sort of people were made to wear badges during the war.  So if you ask me to wear that badge, well, you're no better than Hitler, eh?"

But yesterday, across social media, we had a good number of people saying, (paraphrased)

"I think asking staff working at a LGBT celebration event to wear a rainbow badge is wrong.  I'm not homophobic, but I think wearing a badge supporting LGBT equality is a political act.  It shouldn't be forced on people.  The charity is behaving like Hitler".

The hate online became breathtaking.  My social media filled with hate for LGBTQ people, from some.  I do mean hate.  So bad that I was left shaking.

The lives of LGBT+ people are not some abstract political thing.  So many experience extremes of hate and violence.  So many are misunderstood and misportrayed.  My LGBT+ friends are such lovely people.  Kind, caring, thoughtful, supportive.  Leading sensible, ordinary lives with their wives, husbands or partner.  Contributing to charities, churches, workplaces across the country in wonderful ways.

For me, as part of that community, and someone who works for equality of humanity for all people, it was a scary thing.  A third of autistic people are also LGBT+  Double marginalisation, often double hatred and 'othering'.  For me, the question of equality isn't political.  It's about whether I am safe. Whether I can access a place without being terrified.

Women having the right to vote was said at the time to be a 'political' act.  Should it not have been supported?

Black people no longer being sold in slave markets was said at the time to be a 'political' act.  Should it not have had public support?

The equality, safety and wellbeing of other people isn't politics.   It's being human.  It's about loving one another.  It's about sharing life together.  It's about learning from one another, and learning not to fear difference.   It's about saying, "I'm not threatened by you having the same right to safety and friendship as me."

There may be good reasons for not wearing a badge.  Reasons unconnected with hate or fear for that group.  Pretending human beings are just 'politics' shouldn't be one of those reasons.

I am keeping it all in prayers.

Thursday 3 August 2017

Autism - Stages of Inclusion - Christian Groups

All churches have a huge number of people of all kinds, as part of their teams, parishes, groups and events.  The picture above shows a reflection of this - coloured pebbles, labelled with different groups.  People who cannot read, single parents, people from the LGBT communities, those experiencing violence and fear at home, people who are young, from minority ethnic groups or otherwise.  All are people loved by God.  All bring much to God and to community.  None are 'burdens'.

One such group is autistic people.  As we know, 1 in 30 of our parish and congregation. 

1 in 30 of our leadership team (Hiding, or unaware as yet that they are autistic?).  We know that it is a social communication difference, a natural part of human diversity. Autistic people are good at interpreting each other, bad at interpreting others.  And non-autistic people are good at interpreting each other, and bad at interpreting autistic people.  Neither group is a broken version of the other group.  Autistic brains are tuned to take in vast amounts of sensory information - sight, sound, smell, touch, taste etc.  Overwhelming in busy, noisy groups.  Fabulous for detecting differences that others cannot detect.  Generalising, of course. Autistic people tend to be very literal, and are bemused that non-autistic people are not.  And vice-versa.  It's not a learning disability.  It's not a mental health condition.  Most autistic people do not wish for a 'cure', although we'd like non-autistic people to be cured of their own baffling behaviour (joking!).
We didn't know it was that number of autistic people, of all ages, sexualities and genders.  We didn't know that a big number of autistic people have always been a part of our churches and congregations, bringing so many good things.  Passionate focus, honesty, integrity, dedication, loyalty, love, prayer, worship, skills.  Whatever it is, all autistic people are loved by God, loved as people of worth who belong in our churches and in our hearts.

There's a scale of acceptance of autistic people, in Christian circles. It may be useful to reflect on where your own church or group may be, on this path.


Stage 1) Extreme fear, often based in ignorance and myth: Some or all of the following.
Autistic people are 'othered', feared, hated, demonised, bullied?  People are told that we are a danger or a disaster.  Broken versions of real people, without empathy?  People give money to particular autism charities who will keep us away from their group. Extreme myths around all of us allegedly being dangerous. [No more likely than all Clergy being dangerous, as we know]. Particular therapies centre on 'treating' us so that we are guaranteed tamed and controlled, like animals. Training courses often feature 'How to secure institutions so they can't escape or injure anyone - winning ways with iron bars and electric shock treatment'. 'Tragic parents' get huge media coverage from declaring how awful their lives are because of us. (Yikes). There is no understanding that the autistic children are being accidentally put in sensory/social pain every day for no reason, and responding to that pain.   The public say they would understand if some parents kill us. "Who could blame them?" say the tabloid headlines. We work towards eugenics, a world with no autism in it. We pray that 'the autism' is cured, whether that is the wish of the autistic person or not.

2) Wary tolerance:
Autistic people are allowed in the same space, as long as no-one has to do anything about it. No-one has time or money to 'deal with' autistic people. We are not deemed to bring anything to groups. Books are written by clueless academic non-autistic people to 'explain' us, and put firmly in the 'medical' section of catalogues. Autistic people are allowed to speak to others, but only if we say that we agree we are a tragedy, and how our lives are awful. Preferably with lots of apologising for existing. We are there to accept pity or good therapies to help us be like other people. Being autistic is not accepted. There's relief if we decide not to turn up to groups and events.

3) Growing realisation:
People starting trusting us enough to talk to us as they talk to other people. We're invited to contribute and say something other than "my life is so hard"...but on an unpaid basis or a token 'expenses' basis. But non-autistic people are given large fees or proper public acclaim for equivalent work. There is some acknowledgement that we are allowed to be ourselves. Some people feel good about how Christian they are for being friends with us. Autistic academics are allowed to write the medical books about autism. Which is odd, because it's not a medical condition, any more than being Black is.  People worry about what happens when they are asked why they allowed the stuff in (1) above, and start holding meetings about how to manage the media when the news breaks that this was a bad thing. Gradually, people start to relax, though.

4) Inclusion:
People realise that the myths about autism were nearly all total rubbish. That we're different, with a different culture, communication and set of skills. We're asked into conferences and events as specialists, as experts, paid accordingly. We are invited to talk to people about God, about theology, about what faith means to us. To be open about being autistic at any level in an organisation, and respected for what we bring, not feared. We're allowed to write books about God and our faith, and those are on the same shelves as the other books.

It's a journey. Those are marker points, of course, since all journeys take steps forwards, backwards and sideways.

We've come a reasonable way so far, in a good number of places.  I have been blessed with many lovely companions in the many years I have been advising churches and other faith groups.

Find good autistic people to talk with/communicate with.  Lots of us who are able to introduce you to this fantastic group of people, in ways that make sense.  How to interpret us.  How to hold a respectful conversation with us, and recognise that our forms of respect may be different to yours.  Both are OK.

Decide if your church wants to declare that it's a place that includes autistic people.  Have a look for the guidelines we wrote.  gives links to useful materials including those guidelines.  You can tick the "Autism friendly" box on 'A Church Near You' website, if you are putting info into it for your CofE church.   What do I mean by autism-friendly?  There is no test.  It's about willingness to learn and grow together.  It's about reaching out to good trainers and materials.  Talking with us. 

Remember, it's not about deciding to welcome a group that is somewhere else.  It's about realising that we're already right there in church with you.  Making it safe for us to join in more.  Share more.  Contribute more.  And be open about being autistic, without experiencing the hell of Stage 1, above.  I've had that experience.  It was terrifying. 

It's so good to know that the response will be "Great, what can we learn from each other?".

Thank you for reading.