Thursday, 17 August 2017

Let's talk about Harmful Ablesplaining and Autism



Ablesplaining.  In which 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.

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-friendly for most people.  No hearing loop.  No large print.  Flickering overhead lighting.  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.

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 not 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.


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.

Generalising...

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.  http://www.autismandchristianity.org/  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.

Monday, 31 July 2017

"But The Other Autistic Person Copes Just Fine"


Many autistic and disabled people get this.  A lot.  "Well, Mrs Bloggins is autistic, and she copes just fine, so we don't need to do anything more for you."  "We have a wheelchair user who can access the room and doesn't mind not having access to anything else.  Why can't you be reasonable like him?"  "One of our autistic people is perfectly able to do task X, so you are just making a fuss over nothing.  You could do task X if you really wanted to."

Some examples of the barriers we face.  The idea that all disabled people are pretty much identical.  The idea that we all wake up with the same level of ability/disability, and simply have a bad attitude to coping.

It's extraordinary. 


I'm not OK with being excluded for no good reason. I don't think it's fair or appropriate.

My form of autism is not the same as everyone else's form of autism, for example.  I have a visual form that is heavily triggered by sudden anger from others.  And by flickering lighting and intense stripy patterns.  Such things can put me straight into brain shutdown, leaving me vulnerable and in immense pain.  It's not a personal choice by me.  No, 'getting a better attitude' doesn't help.

I am also faceblind, so identifying who is a 'problem character' in a room is very difficult.  The picture at the top shows my experience of seeing a group of people.  "Just avoid the difficult ones" is, I'm sure, a fun thing for people to say.  But it's like asking a Blind person to just avoid going through the red door.  I have been excluded from Synod for the last two years because of this particular scenario, so it's a personal experience. And a painful one.


If I'm asking for an adaptation, I know that it's a reasonable one, because I'm an expert in reasonable adaptations.  Nationally.  I know the cost, I know how to get funding for it.  I know the timescales involved.  It's not to get attention.  It's not to 'cause trouble' or to be more important than other people.  I work with people.  I help them find funding or contractors.  I make it possible.  But people have to want that conversation.   Interestingly, most don't.  So, it's not about funding, or time.  It's about fear, perhaps.

Having a 'tame disabled person' who doesn't mind being treated like a third class citizen?  That's not OK.  It's not OK to use anyone in that way.  It's not OK to think in those terms, either.  That's just lazy.  It allows people to continue to learn nothing and continue to be afraid of difference, I think.

For me to get to an event, I already take responsibility for...
Checking the plans.
Checking the online information.

Checking the route.
Checking and organising my transport that matches my disability needs.
Preparing myself days in advance with enough rest.
Setting aside days afterwards to recover.
Ensuring family have sufficient stuff to be able to cope during my absence (they have disabilities also, not just autism).
Preparing myself for conversation gambits.  This takes huge time when autistic.

Putting myself through sensory hell to look exactly right.

When at an event, I'm doing people the courtesy of using their language, not mine.  I'm using words, not pictures/text to speak.  I'm using their preferred body language and face expressions, to help them.  I'm using their forms of social greeting and farewell, not mine.

And it's dispiriting beyond words when I am met with, "Why should we have changed out that flickering bulb like you requested three months ago?  John can cope.  Why can't you?  We don't have a load of money, you know.  And we're busy.  Why can't you just do some coping yourself, instead of asking others to do it all, eh?"   

Watch out for places that treat reasonable, timely requests with that kind of dismissal. Whether it's accidental, from a place of ignorance, or otherwise.

Autistic people already push ourselves to our very limits to get there and be there for you. Bearing friendship, fellowship, skills.  Bringing potential ideas, inspiration, funding.  Bringing love.

We are not some budget item or bad attitude, waiting to happen to you.  We are your friends, and we would like to join in too.

Thank you for listening. 




Tuesday, 25 July 2017

Ethics and Autism Access to Historic Sites

Over the last few years, I have worked with excellent charities and organisations. Lots have been places that are historic. They want to get more visitors, and they want autistic visitors to feel welcomed. Excellent.
Unfortunately, some have not understood autism. And, quite accidentally, I am sure, have linked to anti-autism groups and materials. Ones that portray us as tragedies, incompetent, a disaster for families. Ones that promote 'cures' and wish to see autism eradicated.
It is similar to Trustees saying, 'How can we attract more LGBT people?' - and then linking to gay-cure groups. Or to groups portraying being gay, bi or Trans as a tragedy for those around them.
Autism is not an illness. We are not a tragedy.  It is not a 'low IQ'. We are a neurodiversity. We have a different communication system, a different way of socialising and encountering the world.
When I am asked to work with people who see me as a tragedy, that is not a respectful starting point.
I ask organisations to work collaboratively. Responsibly. Respectfully.
If your organisation would like two million more fabulous, wonderful autistic visitors, experts, colleagues and friends, get in touch.
If your organisation wants to link to 'anti-autism' groups, I cannot provide you with access services. In the same way, you will probably not get Black and Minority Ethnic advisers to work with you if you see being Black as tragic. Nor will you probably get LGBT advisers to work with you if you ask them to work with gay-cure groups as co-workers.
Good diversity inclusion starts with respecting one another.
If you are being asked to ignore autistic advisers, and instead work only with parents who major on, "Look how I have suffered", that is a huge 'red flag'. Think very carefully about the message you are giving. You want to have articles by actual autistic people. Advice from actual autistic people. Leadership and projects by actual autistic people. Two million of us means there is a wealth of talent out here.
Thank you for listening.


Saturday, 15 July 2017

Damaging Fundraising Campaigns for Autism


This week, we have seen a large autism charity teaming up with a large supermarket.  They are putting a glass box in the supermarket.  They are asking people to sit in the box for 50 hours at a time. This will allegedly raise money and awareness for autism.

The article calls autism a "mental condition".  It is not.  It is a neurodiversity, part of the normal range of human brain designs.  It has strengths... as well as challenges in today's busy, noisy social world.   The article goes on to say that we have "great difficulty communicating and forming relationships with others".  Inaccurate and misleading.  Well, unless when you go to (say) China, you accuse them of having "great difficulty communicating and forming relationships with others".   Chinese cultures and languages are different.  Autistic culture and language is different.  We can form brilliant relationships with each other, and with people who take the time to learn our communication.

So, we're not doing well in writing this article in the newspapers so far.

Then, there is the subject.  Paraphrased, "I know, let's pretend autistic people are 'locked in their own world', and put people in a box for others to gawp at.  That should be marvellous, eh."

The photo at the top is a cage.  An autistic young person was kept in it.  It is one of endless pictures of cages where autistic children are kept.  Illegally.  Traumatically.  Appallingly.  Like animals.  By some non-autistic people.  The non-autistic people who are supposedly better than us, more empathetic than us, better communicators than us.

We are 'locked in' by some in society.  We are trapped, by some in society.  We are disadvantaged and othered by society.  We are often victims of injustice, imprisoned whilst innocent.  As a child, I was locked in to spaces for hour after hour.  Even now, I can barely cope with being in a room with the door closed.

A parent of an autistic child had the idea for this, we are told.  "Living with an autistic child is like living in a glass box", she said "...a perfect metaphor for the condition".  Well, no.  But it's a perfect metaphor for how appallingly misunderstood autistic children often are.  Whether verbal or not.  Whether of high IQ or not.  I couldn't speak for the first ten years of life and I sometimes still cannot. I know what it's like to feel trapped in a world that champions perfect non-autistic speech above all other things.  It was other people who 'caged' my ability to communicate with them.  I was desperate to be loved and accepted, but endured almost daily bullying and hate.  I didn't learn to hate back.  I did learn to be clear about this not being OK.

So many of my much loved, wonderful autistic friends nationally are horrified beyond measure at this stunt.  The charity has a history of using it as a money-raiser in various stores.  Each time, they are contacted by autistic people who plead with them not to do this. Yesterday, the charity representative claimed it had never had any complaints.  How extraordinary.

What is going on here?  The article describes living in a box as a 'unique, once-in-a-lifetime experience".  Good heavens.  Humiliating autistic people by misportraying us?  Really? Remind me who this is for?

The recent excellent but sobering Autistica report shows that autistic people die on average 16 years early.  Why? It's not a medical condition.  Well, after a lifetime of bullying, othering, mistreatment, defrauding and being unable to access basic services?  Not that surprising. If charities want to make a difference, they could start with tackling some of that.  Working with us, alongside us.

Do not engage with this sort of stunt, please.  Autistic people are not supporting it.  It is damaging, it is humiliating for us, and we do not need myths and nonsense in our lives any more.  So many autistic people consider suicide after that lifetime of hell.  Don't add to it.  

Be positive about autism.  Learn about our communication and our way of showing love and respect.  

Respect difference.

Many thanks.


Monday, 19 June 2017

Dear Parents of Z

Hi, Christian parents of Z, and A.  You have written a Christian book, recently published.  In it, you talk about your children, Z and A, a lot.  Here's an extract:


I've taken the liberty of disguising the name of Z.  It's important that we don't know his real name, nor your real names, in this Blog.  To protect what's left of the privacy of Z and A.

I want to write to you, as an autistic adult who started life non-verbal.  Rocking, flapping, lining things up.  Collecting things.  I'm still that autistic person.  I simply grew up.  I have an autistic son.

I had a brain that memorised sounds.  Even if it didn't know what they meant. And later on, when I learned to speak, I knew what people had been saying about me.

I want to write as if I am your son.  I am not, of course.   He is his own person.  He has his own things to say.  But it's how I would write, if I knew my parents had written this about me.

"Dear Mum, Dad.  It hurts me to read what you wrote about me, in front of thousands of readers.  It hurts so bad. 

The things you call obsessions?  They are how I learn. They are not obsessions.  They are my passionate interests.


They are how I find a sense of peace and calm in the noise.  The incredible noise around me is stuff caused by you both.  Your house is so loud.  And it stinks.  It stinks of fresheners and cleaners.  You stink of fresheners and cleaners.   And it's so bright.  The colours, the patterns, everything around me is so intense.  So scary.  Everywhere I go, I can barely see, barely hear in the chaos.  Those intense flickering fluorescent energy-saver lights, turning everything into a weird disco to my eyesight.  Why is your world like this, and not like the peaceful gardens?





So, when I see you, my beloved parent arriving downstairs, I know you want to help me survive the day in this hell that modern society has created.  I know you understand that I need to watch something familiar.  I'm learning language, my way.  Repeating it, over and over.  I don't use your language.  My culture is different.  My body language, my voice use.  I use a whole different system.  But I want to learn yours.  I want to learn the same way as you learn a foreign language, by repeating it over and over.    I'm training my brain.

The pattern I create, with the colour and lines, the boxes, the inserts - those are my art.  In the same way that if someone came up to a piece of art you did, and crayoned over all the lines, you'd shout.  I shout.  I shout because it's such vandalism to destroy someone's art.   Someone's science. Such destruction.  You say it doesn't matter, but it does.  It matters, Dad.  It matters....

You are telling people that my bouncing in excitement at learning new words, at seeing familiar things, is wearing for you?  I don't understand.

You are saying to your readers that my flapping is exhausting for you?  Flapping is how I see distances, Mum & Dad.  Flapping is how I feel where my body is.  Flapping is how I sense the world around me.  It is different from you, yes, but that's OK.  I don't mind that you stay still and refuse to bounce.

You compare life with us to hell, in the book.  I don't know how to explain how awful it is to ponder that this is what you think of us.  That this is what you want to write to Christians about us.

I was hoping you'd be the kind of Mum & Dad that would respect my privacy.   The kind that would protect me from the world.   Save me from the embarrassment of a generation of people reading a book, saying, "Look how awful Z is!"  "What heroes his parents are for having him".  "Thank goodness for Jesus getting the parents through this devastating experience of having Z in their lives."   

I don't know what to say, Mum, Dad.

I love you.  I love you so much that I trust you with my precious DVD collection.

But, don't you know how much it hurts me, to be paraded in front of the public with my name?  For writing how much of a hero people are, to have a child like me?

Please Dad, please Mum.  Please be the parents I need you to be.

I love you."


Sunday, 18 June 2017

Crumbs From the Table - Autism, Lunch and Different Treatment


I was at a conference recently.  It was about autism.  It doesn't matter which conference, because I'm just using it as an example.  Quite a common example.

The conference is about autism, yes?  So, did we have actual autistic speakers at the microphone?  No.  We had non-autistic people, 'ablesplaining' autism.

What's it like?  It was like the lunch, that day.
Like many autistic people, I have difficulties with certain foods.  Some of us, because of textures.  Some, because of taste difficulties.  Some, because of the way some foods smell.  Some, because of separate digestive difficulties.  So, a lot of us need different food, or our own separate portion rather than a 'grab it yourself' buffet.


I'd said I needed different food, well in advance.  i explained what I can't eat.  I can eat a lot of food.  I can eat fruit, salad, vegetables, baked goods made with rice, tapioca or potato flour, plain crisps, meats, cheeses, eggs, fish.  I can't eat wheat, corn/corn products, oats, nuts or chocolate. Lots of desserts don't need those things.  Lots of cakes don't need those things.  Even local supermarket stock standard stuff I can eat just fine.

The lunch was laid out for us.   Huge organisation.  Big, big budget.   Most of the delegates enjoyed row after row of delicious sandwiches with all sorts of fillings.  The photograph on the left shows such a buffet.  And huge slabs of the most glorious cake.  They could also have their choice of fruit.   In the afternoon, they could have muffins of various kinds, organic cake bars, more fruit.  


Their calories for the day, well, let's say 500-1000.

The photograph on the right shows a plate of lettuce with a couple of bits of other salad on it. My lunch, a few lettuce leaves, into which had been put a tablespoon of tinned mixed beans and a tiny amount of chopped green pepper.  And a piece of fruit.   In the afternoon, a piece of fruit again.  No cake, no cheese, no meat, no fish.

My calories for the day, well, let's say 150-250.  Wonderfully healthy I'm sure - but, unequal.

"Catering for autistic people?  Oh just give them the salad garnish and an apple".

It's an analogy for much of the way we are treated at events run for, and by, and with, non-autistic people. 

Let me be clear; some non-autistic people are fabulous.  Hugely welcoming, lovely, generous hosts.  Splendid at working with us, listening to us.

But autism conferences too often do exactly this.  Treat us as a total afterthought.  Even if the subject is autism.  Even if the particular subject is how autistic people end up being 'othered' over, and over again....and how we respond to that.  Wonderfully ironic.

I work mostly with autistic specialists, autistic friends and autistic professionals these days. 

We're not lab animals, best fed on lettuce and fruit, and spoken at.  We are people. People who can communicate for ourselves, whether we are verbal or not.   That remarkable insight is free of charge, unlike my consultancy services, which are reassuringly expensive.

Thank you for listening.



Wednesday, 14 June 2017

Autistic Empathy and Caring



A good number of us in the autistic communities have been shocked by an author alleging autistic people lack empathy.

This is one myth that is not only rubbish, but really damaging rubbish.

If anything, most of the autistic people I know have so much empathy for the pain and suffering of others that they barely know how to handle it.

Let's look at how that myth happened.  I am going to generalise.  Everyone is a little different.  These are examples.

Autistic People Cannot See if You Are Sad
Imagine you have a Blind friend and you sit on the sofa next to them, looking sad.   They don't notice.  Would you be tempted to say, "Gosh, you lack all empathy!".
And yet, non-autistic people may do that to us.
We can't see face expressions that clearly.  Nor can we hear voice tone very clearly.  Not in real life social situations we can't.
So...problem one - you're imagining we can see and hear those things, and we can't.

Solution - say how you feel.

Autistic People Need Thinking Time
Second dilemma - how to respond.  Our body language is different to yours.  Our face expressions are different.  Our voice tone is different.  And....we are on a time delay.   It may take a few minutes....or an hour...maybe a day or two....but all of a sudden, bingo, we've processed this.  Then, goodness me do we feel the empathy.   Yes, non-autistic brains can be much much faster at this.

A colleague of mine explains this.  She said a friend in the street told her that she'd just had a cancer diagnosis.  My colleague acknowledged this, and went home.   Having got home, realised what it meant, and then realised how her friend must be feeling.  Then, went to a shop, bought a big bunch of flowers, and went round to give the friend the flowers and be there for them.  Hugs, love, all the usual stuff.  It was a time delay.  That can happen.

Me, if I'm not totally 100% focusing, my face can be stuck on Wrong Expression.  I'm desperately listening for key words.  Anything that indicates sadness, pain, etc.  If I hear one, it's a race to make my face and words match what I feel inside.  It doesn't always work.  I'm trying to mimic what non-autistic people expect to see.   Inside, I feel their pain so intensely.  But I'm inside a body that naturally speaks a different body language.

Autistic People Display Different Behaviour in Response to Your Pain
In our own culture, it can be a sign of respect to not rush up to someone and hug them.
It can be sign of respect to not overload someone with eye contact.
It can be a sign of respect to not overload someone with words.
In other words, all our 'respect' signals look just like your 'couldn't care less' signals.  See the problem here?  We're misreading each other.

Ours is designed not to overload already-hot-brains.  So we try hard to keep each others' brains cool.  Low sensory stuff.   Very quiet.  Different to you.  Not lacking empathy.

Autistic People Do Social Justice
I am so honoured to work with autistic people who are so filled with love and caring.  Especially for big social justice projects.  A huge passionate interest in fairness, in equality, in justice.  So many work in caring professions, too.

Some Autistic People Don't Have Much Empathy
And that is true for some non-autistic people too.

That's the reality.

It is a huge shame that some professionals mistook our differences for a 'lack of empathy'.  It has been so damaging for autistic people.  We have so often ended up feared, shunned, hated, left without friendships and relationships, rights and good life outcomes.

The myths need to stop.

Help us stop them.  Next time you read something that portrays us all as non-empathetic monsters, challenge it, please. And get to know some of the fantastic autistic people, of all IQs, all abilities to communicate in words or otherwise, all genders and backgrounds and ages. 

Thank you for listening.





The picture shows a number of gemstone hearts of different sizes and colours, arranged on a black cloth.

Monday, 12 June 2017

Tough Talk 2 : Autism, Love, Humanity and Verbal Violence


The photo shows a wooden door.  On it hangs two hearts.  One is larger and made of a weave of grey sticks.  The other hangs within that, a white heart.  It was a photo I took when visiting a beautiful scented garden, on holiday with my much loved partner.

It symbolises, for me, the love inside of every person.  Without doubt.

I'm autistic.  For the first ten years of my life, I could not use words to communicate meaning to people.  I could copy words, but it was just a sound.  I could write words, but they were just a pattern.

Some would say that I could not possibly have understood God.  That, to understand God, and love, one needs a grasp of language.  An intellect.  A sense of self.  A sense of what non-autistic people need, and think, and want.  I had none of those things.   But...

I knew God existed.  I felt his love.  I learned about God, and Jesus, from pictures.  Pictures were, and still are, my brain's language, and God speaks picture.  He speaks love.  He speaks the very language of the person he created.  God was there.  Right there with me.

Today, I read some of a book by a theologian.  It was so bad that I actually dropped it in horror.

It is verbal violence, arrogance above all other arrogances, for someone to declare people like me to appear to be non-human.    Appearing non-human because we could not speak as others do.  Non-human because surely people like us can't actually BE human, eh?  To write that there's nothing human to see, so we have to trust Jesus knows what he's doing when he says we're humans too?  Goodness me.   Oh my.  Is that what some think Jesus said?  Really?

It is verbal violence, and arrogance indeed, to assert that when we get to heaven, God will cure us of autism whether we like it or not.  To declare that those of us who worked for years to learn language...who are still sometimes non-verbal... are 'high functioning' and therefore know nothing of supposedly-'low functioning' autism.  Hands up all those who want to be described as 'low functioning'?  How absolutely awful.   What on earth is 'high functioning'?  We know how many supposed 'high functioning' people die horribly early. So much for that pointless label.  Our deaths too often a result of the hate, the othering, the exclusion.... the careless verbal and physical violence so many of us endure so many days of our lives. 

And it is appalling to speak for us, without permission or insight,  only to declare our apparent inhumanity...our brokenness... as if we can have no experience of God of our own, no love, no caring.  As if we are not beautifully and wonderfully differently made.

We show caring in different ways to others, sometimes.  It can be in honouring silence, in respecting space, in carefully tailoring eye contact not to overwhelm other autistic friends.   Our language is not 'broken'.  It is different.

We are not 'broken'.  We are autistic.  Autism is not a low IQ.   It is not a violence.  It is not a lack of empathy.  Look at the diagnostic list.  Those things are not on there.  Even lack of speech is a different thing to autism.   Yes, some have all of those. Some of any population have all of those.  But autism is not those extra things.

I cannot speak for all.  I do not try.  But I am a professional, working for and with autistic people.  Living life with my autistic family and friends and colleagues of all kinds.   And I have had a lifetime of living in an autistic mind.  

I will not have any theologian writing books that question our humanity, unchallenged.  It is not yours to question. Do you know where questioning the humanity of a group can lead?  This is no intellectual game.  This is life or death for a vulnerable group.

I am here to say that you should go and find everyone you can...and listen.  Listen with your eyes.  Listen with your heart.  Listen with your soul.  

Learn our ways.  Learn why they are our ways.  Be in our space in respectful ways.  In ways that honour own neurology, our communication choices.

Listen.
Walk with us on life's journey.
Help protect us from sensory and social overload pain.
Enable our 'voices', in whatever form those take.
Love us as we are, and honour that of God which is autistic.

Listen....observe....and feel....
For you will hear a much loved child of God.  You will see humanity.  And you will feel love.

You are loved.  As you are.  
You are human.  So am I.
And God loves us all.