A strange myth about autism and business? That autistic people are 'out there somewhere', and that businesses have to find ways to include us. That all of us are some kind of 'worthy charitable inclusion act'. That we are a cost. I have news; you already have autistic people in your business lives. They're probably the ones making you a profit right now.
Generalising - as of course every autistic person is different, and non-autistic people do these things too:
Using the internet? Autistic people built and run that.
Using computers? Autistic people design and build those and the software.
Using Accountants? Autistic people are excellent with figures and deadly accurate.
Using Lawyers? Autistic people are brilliant at memorising thousands of case studies and knowing precisely which laws apply to a situation.
Using Surveyors? Autistic sensory abilities can detect problems in buildings well before anyone else can. Autistic 'nonsense-detecting' means you're more likely to get a fair and straightforward, accurate property negotiation.
Using a creative team? Autistic designers, artists, authors are applying extraordinary strengths and abilities to 'think outside the box', to create something amazing.
Do young autistic people have a fair chance of employment? No. Most are never given a chance to show what they can do. I'm working to change that. I can't change that without being 'out' as autistic myself. So, I am. And if you care about young autistic people being given a fair chance, you'll want to support people like me, I'd hope. Can all autistic people go into employment and do a fabulous job? No, some have a level of difficulty that means this isn't possible. Does that mean they are a burden to society? Absolutely not. Every autistic person is a person of value, bringing things to this world. It's definitely not about 'can you make big money'. But, it's important to say that some of us can. Even those of us who started non-verbal and sometimes still are.
I run a business. I'm autistic. It's our business. I adapted the business premises so we can work without being in pain. That was easy to do and not a lot of money. It's now in its 18th year of success, and this year has been a brilliant one for profits. What do you think I do? Perhaps your thoughts turned to, 'Ann must run a workshop creating cards at £1 each with special help from a kind charity person'. Or 'Ann must be selling train timetables through eBay'. No, honestly, these are some of the strange ideas about autism and business. Lots of people do that sort of thing, and for some, it's an ideal choice. I don't mind what size of business people run, or don't run. Our son is autistic. He's a self-employed person with his own mini-business, which suits him really well. Me, I co-own run a national Surveying company. We handle £millions a year. We assess buildings totalling £billions a year. Healthy profit. Fantastic team employed. Offices in the Thames Valley and central London. Is it some sort of charity-supported social enterprise? Nope. This is Professional business, fully Regulated, competing directly with the 'big guys'. And lovely competitors they are, too. We're blessed with fabulous customers who know that we deal fairly with everyone. We have a brilliant team of Accountants, Lawyers and website gurus who are thoroughly nice, genuine, professional people.
We love what we do.
"Surely you must be at a disadvantage, being autistic, Ann?', some say. Nope. It's just different. Autism is why we are the only business of our type in the UK that has an unbroken track record of accuracy, to our knowledge (and the knowledge of our Insurers). An unbroken track record of zero claims for losses.
Our specialist knowledge means that we've been able to be the wise-friends of many a Lender, getting them out of trouble on big transactions. An example? No names or identifying details of course...We were sent to a site in the West Country. Met a lovely person who explained that they wanted a mere £1.5 million to upgrade their business premises. (Don't we all....) They took us on a splendid tour of their business estate. It all looked very plausible. We were given the 'full charm' approach. Charm doesn't work on autistic people. Walking round, the Surveyor and I took in every detail. Autistic-brain visual recording, data collection, photos, measurements. I'm not a Surveyor - I own the business. But I can assist on site, and sometimes I do. I sensed something very odd about the environment.
Back to the office we went. Yikes: the site had been a major factory using explosives, never fully cleared as far as we could tell. Nothing on modern plans. Nothing on the environmental checklist. I tracked it to old records that aren't part of any modern system. Historic maps showing strange markings below ground surface that could only be one thing....and it was. Further delving into records... and the plans for the new buildings they wanted to build didn't match with the ones given to the Bank. A design they claimed would work for production could not possibly have worked. The whole thing was unworkable. But absolutely none of it was something we 'needed' to have investigated. On paper, it was all fine. It matched the basic website records. So, why did we bother to look beyond the obvious? Autism. We sensed the chemicals. We spotted the access problem from historic mapping. I could visualise the production process and realised their plans were unworkable. Detective work. A real strength.
Is this boasting? No, it's accurate. Doing this for public acclaim isn't an autistic trait.
Is it sometimes hard? Yes. Because we get some myths about autism, and those aren't helpful. Because we also get a very few people who are just plain prejudiced and who ignore the fantastic track record and decide they don't do business with 'people like that'. That's OK - there's lots of less accurate firms to choose from. Because we get a very few competitors who think they'll win more business if they tell people some myths about autism...so we don't get the work. Most are lovely, of course.
We love our business, and we love being the 'eyes and ears' of our clients, making sure that they make as much profit as possible, in as wise and moral a way as possible.
If you find an autistic business, the correct phrase to utter is 'brilliant!'
You'll find any number of autistic people around you already. Many may not know they're autistic. Many may have hidden it for years, concerned about whether they will encounter an unfortunate reaction.
Make your own business 'autism including'. Find out about difference, and about what autism really is (a sensory/social communication difference, present from birth). Get some training for the staff. Brilliant autistic trainers available for that.
Be clear that you value what people bring, and are relaxed about doing business with all kinds of people.
Because together, we're stronger.
The picture at the top shows piles of coins, with a red arrow showing the amount of profit a business is making. The arrow is going upwards, showing increased profit.
Monday, 11 September 2017
Tempting, isn't it - to think that autistic people are 'out there somewhere', perhaps in a care home? Someone else's 'responsibility'. Nothing to do with us, in our church. Well, perhaps we know an autistic child, and sometimes nod in pity at the parents as we pass them in the street?
The picture above shows some of the reality, rather than this set of myths. It shows a picture of a large church, with arrows pointing to all the contents and activities that could have had autistic input. If you are in a church building, you're in a building pretty much built and designed and fitted out by autistic people. Looking at art or sculpture? Quite possibly an autistic sculptor or artist did that. Listening to music? Very likely you're listening to autistic organists, choir members. Listening to a sermon? Is the Priest autistic? The people in the pews, praying - some autistic. The people offering welcome and friendship - some autistic. Every person has something to bring. The same as anyone else in the world.
Look around you. In the pews, the woman, dressed neatly and smiling. Autistic.
Go outside. See the people sleeping rough under the bridge? Some studies show 6 out of 10 homeless people are autistic.
Working with groups? 1 in 30 of their number will be autistic.
Autism isn't 'out there somewhere in a care home'. It's been around you all your life. You just didn't know the people were autistic.
So, when I hear people in our churches say, "Autistic people aren't my priority - I don't have to know anything about them", I gently challenge them. What do they mean by that? What fears or misunderstandings lie behind that statement? How do we work together to find out how to break down those barriers? How do we make better use of the fantastic gifts that autistic people bring to every group, if given the chance to do so?
I am blessed to be working with churches and church leaders in many places. Training clergy. Advising on access. Collaborating on projects. All as an external consultant, not a formal adviser. I'm autistic.
And, one day, soon, I hope, churches will be proud to look round them at all we already do for God and community, and say,
"Autistic people are my priority".
Thursday, 7 September 2017
The strange myths and illogical beliefs around autism include verbal/non-verbal. The idea that either we can totally not speak, or can always speak. It's nonsense.
For a start, if we look in the DSM V diagnostic checklist for autism, speech, or lack of speech, isn't even part of autism now. It's a different classification.
A number of autistic people, me included, also have speech and language difficulties of some sort.
What do we mean by speech/useful speech?
Do we mean that a child has no ability at all to say a single word?
Do we mean that they also cannot write or type words?
Do we mean that they also cannot write or type words?
Do we mean that they can speak sometimes to say individual things, but are non-verbal at other times?
Do we mean that they can speak for a short time in a social conversation, then cannot manage to speak further?
Do we mean that they can repeat individual words over and over? Or, perhaps phrases over and over?
Do we mean that they can put phrases together, for example ones learned from TV or radio, and attempt conversation that way?
Do we mean that their difficulties with speech mean that they cannot defend themselves in an argument, or ask for things they need in shops and at the Doctors?
Do we mean that they have difficulty with some language, e.g. social concept words?
Do we mean that their voice tone and pacing is so unusual that people cannot decode it easily?
Do we mean that they have delayed answers to things - perhaps responding minutes or hours later?
Do we mean that they go to build a friendship with others using words, but it goes horribly wrong?
What do we mean by 'non-verbal', and why are so many insistent on describing language as just this strange binary : "Verbal/non-verbal".
Me, generalising....I could sometimes repeat individual words as a young child. I could repeat individual phrases. I learned to copy down words and phrases. Eventually, I could piece together enough words and phrases to write stories. I could sometimes read out words and sentences, without really understanding what it meant. Mostly, if asked, I'd hide. I could also attempt to say very short answers with others, e.g. yes, no, please, thank you. But in any conversation, up to age 10, I was baffled. And anxious. And mostly non-verbal.
I would try to decode what the other person said. My brain thinks in pictures, so I had to visualise it. Then, I'd visualise my answer. Then, my brain would have to try to find the right combination of words and phrases to respond. That took a long time. Sometimes, nothing would happen - I'd go to talk, and there was no response from my body. Or I'd say something garbled. Or I'd say a response so late that it made no sense to anyone; the conversation had moved on.
People thought I was shy. Or rude. Or both. I spent two years in a class in secondary school, and the teacher during Parent Evening had no idea I was one of his pupils. He had never heard me speak. I mostly didn't. I was too anxious to attempt it, because it would go horribly wrong most of the time.
Some days, as an adult, I'm hardly verbal. Even though I'm an extravert and love being with people, sometimes I cannot speak. I can nod. Maybe I can say the short word answers - yes, no, thanks, please. Maybe I can think of some stock phrases to say. (Hoping they're the right ones).
Other days, I can talk really well.
Much depends on how exhausted I am. Whether I feel well. Whether I've overloaded myself with sensory/social input.
Can I in theory ask for things in shops? Yes.
Can I always ask for things in shops? No.
Can I in theory explain an illness to a Doctor? Yes.
Can I always ask for things in shops? No.
Can I in theory explain an illness to a Doctor? Yes.
Can I always explain an illness to a Doctor? No.
So, am I verbal? Am I non-verbal? Yes. It's a yes to both things.
So, am I verbal? Am I non-verbal? Yes. It's a yes to both things.
The moment I'm in a conflict situation with an angry person, I'm stuck. I go to speak, nothing happens. Nothing at all. The moment I'm in sensory distress, I go to speak, nothing happens. The more tired I get, the more I put the wrong words in sentences, or mispronounce words randomly.
I find workarounds. Making sure I'm in a good sensory environment. Resting before and after a speaking engagement. Talking on subjects I know, where I already know what to say and how to say it.
Most people would never know of my struggles with language, because they are unaware of the absolutely huge effort I put into disguising it.
I wish more professionals would understand that autism is not a set of binaries; "high functioning/low functioning", "verbal/non-verbal". Everything is a four-dimensional spectrum of abilities, which change over time and can vary day by day/hour by hour.
Be aware that some people - autistic or otherwise - will struggle with some speech ability.
Be cautious about picking on people to read something out, or contribute verbally.
Allow people to contribute in ways they can handle. It might be sign language. It might be written.
And, be aware that young people who are 'quiet' may actually be struggling to speak.
The picture shows a representation of a group of diverse people. The ability to speak is just as diverse.
Sunday, 3 September 2017
The photo shows a hand, with one coin in the palm of the hand.
I've been discussing pay, amongst autistic advocates, speakers and professionals. It seems that a lot of autistic speakers at conferences are being paid almost nothing, or nothing.
I am speaking from my own position of 'privilege', as an autistic business professional who is paid a substantial sum in outside industry. I also work within autism, as a national speaker and consultant, from time to time. For various groups. Many of those are wonderful, and who treat me and others very well. So this is not a complaint by me about my own treatment. Here, I'm using my voice to signal a huge area of general injustice. I want autistic expertise to be treated with more respect. I know so many fantastic autistic speakers and other professionals who are truly given the message that they are worth nothing. It has to stop.
There are a number of 'superstars' who command high fees. Sums in excess of £2000 an event. Nearly all of these appear to be non-autistic diagnostic professionals. Or, diagnostic professionals who may be autistic, but are not disclosing this to anyone - so will get the 'privilege' from others that goes with that.
What do I mean by privilege? I mean that life is often easier for non-autistic people, compared to autistic people. There is no automatic expectation of incompetence, low IQ, etc. There is usually no expectation that non-autistic people will accept zero pay "for work experience", as a main speaker at an event. There are lower chances of assault, abuse, defrauding. Getting respected as a professional is generally easier if you're not autistic. Getting book deals at a fair rate of pay is easier. Getting media performances at a fair rate of pay is easier. I've had a lot of conversations with Psychiatrists and Psychologists who are autistic, and have never disclosed it. "My career would be over", said more than one, to me. Fair point. I'm not about to force people to disclose autism. But, in this blog, anyone who isn't 'out' as autistic, I will describe as 'non-autistic', because that is how they are being treated by others.
(I am very aware that masking autism has its own cost - I did that for too many years, and it was exhausting beyond measure. Now, I'm positive about autism and the things we bring to the world, and I want others to be positive too. Taking that step to be 'out' has its own cost. I chose it, because I want to demonstrate what I believe in. I'm thankful that I am in position to do so. Others may not be. I am working towards a world where there is zero cost for saying "Hi, I'm autistic". Work with me on that, please, if you can.)
Let's look at some example numbers. At a national conference, say there's 400 people. Lets say they are paying £100 each to be there, on average. (Often it's a lot more).
The organisers have to pay for the conference centre and food/drink, certainly. Plus staff time to organise it. Plus technology. The usual things. That costs (say) £15,000. I also organise conferences. That's not a guess - it's a fair estimate.
So, in this example, we have £25,000 'profit' to pay the speakers and help run the charity/company, etc. That's a lot.
We know that the diagnostic professional non-autistic speaker can command a fee of some £2000+. At big international events for business, keynote speakers can get anything up to £500,000+. No, really. Half a million quid for the 'big guys'. The famous TV stars, etc.
Guess what the autistic speakers get for a national conference.
I mean autistic speakers who are bringing equivalent experience. Equivalent expertise. Equivalent new research. Equivalent time and training skills.
On average, about £200, it seems. Was that your guess?
Often, only travel expenses. Or a book token.
It takes several days of time to prepare for a conference. Research, slides, background reading. The travel time. The time there. The time to recover. All for a book token?
Better than that, the non-autistic 'keynote speakers' often get their own room, their own dedicated staff. All the autistic speakers get to share a not-as-nice room together. The non-autistic speakers even get business-class flights paid for, in some cases. Lovely.
The billing for the event will often read, (summarised...)
"Come and see the amazing Non Autistic Keynote Speaker. They have written books, done TV shows, they're amazing!"
(Oh, by the way, some autistic people will speak too - I think one of them is called Sid, oh wait, no, perhaps I mean Fred, not sure, but they'll talk to you about maps or something for a few minutes)."
I exaggerate only slightly. Oh my. Can you imagine going to a conference on, say, women. There's the keynote speaker: "Come and listen to the Amazing Man speaking about women! (Oh, by the way, some women will speak too - not quite sure what they'll say yet, but isn't it nice of them to turn up - we'll give them a round of applause for doing so). I bet you'd be horrified.
Be horrified. Because you're often watching that happen, in conferences about autism.
"But people won't pay to listen to autistic speakers, Ann", say some organisers. "We need the money, and they will only pay big money to listen to non-autistic diagnostic people. We can't afford to pay the autistic people a lot. It would take out all the profit. "
Absolute nonsense. If you can't afford to pay people, put the price up to a level where you can afford to pay them. Jolly well make sure people respect and appreciate the expertise of the autistic professionals in that room. If you have £3000 to pay all the speakers, do not give £2000 to just one person, and £100 each to the others. Pay them all a reasonable sum by dividing it more evenly. It's not hard to find solutions that are respectful and appropriate.
The reality is that most non-autistic speakers are not saying anything from lived experience. Yes, they have met a lot of autistic people. They borrow our ideas and make money out of them, a lot of the time. And...their work is often 'medical model', in most cases. What do I mean by that? I mean the idea that autistic people are patients, in need of fixing. Possibly to be paraded in front of the audience as examples to show how marvellous the diagnostic person is. ("Living zoo exhibits"). Nothing more. It lacks credibility in what is now one of the fastest growing, most dynamic and pioneering fields of human justice and equality.
Autistic people have our own 'voices', whether spoken or through technology. So many are on low pay because they are taken advantage of, not because they have no skills, no expertise. So many are trapped on benefits, unable to earn more than a token sum without ruining their benefits pay...and never given the chance to earn a living wage. Not by any of the multi-million-pound industries that benefit from 'therapies' and 'information' about us. Extraordinary.
We have our own expertise to bring to events. National professional-level speakers at major events who are bringing the very latest research, from actually-autistic people, as actually-autistic people. And, the voices of those who are talking about their lives are of huge worth. The cost to them, of standing on that stage, revealing such personal and possibly humiliating detail, can be huge. Days of preparation. Days of recovery for some. To be paid nothing? Or a token bus fare and a book voucher? Is this how you want your own young autistic person to grow up, thinking that's all they are worth? Of course not. "But who will look after my child when I die?", so many parents say. Your child could, in most cases, look after themselves, financially - if only we would invest in making life doable, and in paying autistic people a living wage for equivalent work.
Many attendees at conferences have been taught that only non-autistic diagnosticians are worth paying for. They hear it from the organisers, and they believe it's true, I would say. It isn't true. Hearing from diagnostic professionals can be a great thing. Learning from therapists can be very valuable. But, if they had the answers, why - 20 years on - are we still in the same 'low-pay, high-abuse' zone, as autistic people? It's because we are failing to value autistic people as people, in my view and experience. As people worthy of respect.
Do some people work for nothing, for friends and charities, by choice? Yes. And, if it's by choice, that's fine. I do, sometimes. Anyone, autistic or not, could make their own personal decision not to be paid, or to get a low fee.
What this multi-billion-pound autism industry is often doing is basically lying to autistic people about pay. Making autistic people work for almost nothing, pretending it's all they can afford. Well, that's exploitation.
If our conference organisers are telling attendees that only non-autistic people are worth paying, that's prejudice.
It's injustice. We should not be supporting it.
Next time you go to book a conference, ask whether the autistic speakers are being paid a rate that reflects their time, effort and expertise. Perhaps don't attend events where we are on stage as 'zoo exhibits' for a non-autistic person to use to make themselves look great. Or which show autistic people only as alleged patients to be fixed. We are not ill-with-autism. This is a neurodiversity. Yes, some have multiple disabilities/conditions as well as being autistic, and for them, life is very tricky. I'm talking specifically about autism here, though.
If you are a superstar non-autistic speaker, reflect on the message you're giving to others. Are you showcasing the skills and talents of autistic people? Are you 'boosting' the voices of autistic fellow professionals? Are you demonstrating really good co-working, skilling people up to work alongside you? Making sure they are treated fairly? Use your power. Use your privilege. Help change the view of the world with us.
Autistic people need to live. We have bills to pay. We don't live under hedges and eat berries between conferences; We're not all in 'care homes', wheeled out for conferences. Only 1.6% of autistic people live in supported accommodation. I bet you thought it was more than that. Most of us have apartments, houses, families to support. We need to buy clothes, food, toiletries, same as you do. No, a book voucher will not buy those things.
Pay good autistic people.
Because you don't want a future where your child is worth nothing.
Thank you for listening.
Monday, 28 August 2017
Sometimes, I get people who are puzzled about who I am, and why I do what I do. I can understand that. It may help to explain some background.
I'm Ann. I live in England, with my husband and son. We're all autistic. Different sorts of autistic, too. Also sharing our household are my sister, and the family dog and cat.
None of what follows is a 'pity party'. I'm comfortable with all of it. It is simply my past.
I came from a family that was its own enigma. Both my parents died many years ago. My Dad was a bookbinder by trade, then became a factory worker and Trade Union chief. In later years, he was sponsored by the Trade Union to become the country's first ever Trade Union background Magistrate. Our lives were punctuated by many a Police Officer turning up at the door to get papers signed, and many legal books in the bookshelves. Mum had been one of the first ever female Computer Operators, until being given the wrong medication led to a spiral of illness. It was odd, being faced with a world involving Magistrates, because we were not a rich family. This is an understatement. We were on free school meals, and second hand clothes, and growing what we could manage to eat. We lived in a big end terraced house, which was bought with no plaster on the walls, and one sink. Heating it was a luxury we could rarely afford, so we kept one room warm. DIY took years, but we got the house gradually into working order.
I was typically autistic (rocking, lining up things, etc) and non-verbal for the first ten years of life. To be precise, I could speak, but it was echolalia. I would copy phrases I'd heard others say, without any idea why, or indeed any clear idea about what anyone else was doing around me. Absolutely no idea how to use language for social communication. Often completely non-verbal, which people mistook as quiet well-behaved behaviour. I am still sometimes non-verbal. People generally don't notice; I've become an expert in 'plausible absences' during those bits. But I can use technology to communicate, so am keen to get myself into social difficulties all over the social media (joking) (mmm, thinking about it, not really joking...). It's amazing how many misunderstandings of intent there can be, eh...
Growing up as a young autistic carer was an experience. I won't go more into that right now. I'm still a carer, because all three of us in the family care for each other.
I lived, and live, with multiple health and physical difficulties also. Remember, this is not a tragedy - this is simply an explanation of the experiences I have. If you are a person of a nervous disposition, go get strong tea or something and skip to the end paragraphs. Not literal skipping. All of these experience have given me insights into those sorts of experiences for others.
I developed a spinal scoliosis, which has led to arthritis...and later to two shoulder operations to make room for trapped nerves that caused much pain for quite some time. I'm faceblind, which means I cannot identify people by looking at their faces. In 2011, I was diagnosed with an aggressive form of breast cancer, and survived chemotherapy, radiotherapy, surgery and a 'wonderdrug'. That left me with nerve damage of various kinds, and something to say about medical treatment and how accessible it is for autism.
As an older teenager, trying to care for a very ill Mum, and be the primary wage earner for the family during a time when my Dad's health was also failing....well, it's fair to say that the pressure got to me. As it would to anyone, autistic or not. I developed severe anxiety that led to OCD and agoraphobia. It was a long haul out of the worst of that. Without medical help. Couldn't access it.
All though this, my faith in God kept me going. i wasn't a churchgoer, because I couldn't access church. But I had no doubt at all that God was there, and walking alongside me. A few times, picking me up and setting me back on my proverbial feet. I have friends of all kinds of faiths and of no faith at all. All loved.
I left school and went into working at the Treasury of the local Council. Maths and computers. I could do those. Made no friends.
From that, I went to work with Computacenter, with the fabulous multimillionaire boss, Phil Hulme. He taught me everything I needed to learn about good management skills. He was kind, straightforward, always happy to join in with tasks, and treated us all as equals. I became a well respected computer trainer. Every day, I was teaching people something I knew, and could pace it for how much I could handle. It was ideal for my set of abilities and needs. Actually made two friends. This was amazing.
That style of management became a model for running our own business; hubby and I set up a firm of Chartered Surveyors. He's one of the country's top experts in Surveying, and has been for decades. Remarkable man. Near-photographic memory, amazing ability to spot potential in property transactions. Nearly 18 years later, the firm is still doing really well, thanks to the clients we have and the excellent contacts across the country. Do most of them realise we're autistic? Perhaps not. Makes no difference; my skills in mapping, computers, research and equestrian property, hubby and team's skills in Surveying, and the excellent support we have from the accounts and report-writings team members mean we can all provide an extraordinary service. The one Surveying firm in the country that has literally never had an insurance claim against it. Not smug. Just accurate. You're looking at autistic advantage there.
Meantime...I became a Trustee of charities, and indeed a School Governor for a good few years. I specialised in helping people who were experiencing domestic abuse, and also in helping people who were new to autism. Twenty years later, working part time on this, I'm honoured to work with excellent autistic teams across the UK. I help train a lot of medical professionals on autism. I speak at conferences about how important it is to be positive about autism. And, how loved every single autistic person is. No matter what their IQ, background, ability, personality or any other characteristic. I've been a pioneer in talking about the strong links to LGBTQ in the autistic population, and have worked with church groups on autism and LGBTQ discussions and gatherings. I do a lot of work with historic properties, also, making sure they are as accessible and inclusive as possible for autistic people. I train clergy teams on working with autistic colleagues and parishioners. I'm co-writing a book on autism and theology with a lovely theologian friend. I am working on helping the medical communities understand autism and suicide. For six years, recently, I worked with the Government, as an adviser for their autism group. I retired from this to let others have a chance, and because of exhaustion trying to reason against some ABA promoters (a form of autism therapy). And I'm cheering on our son, Chris, who is becoming well known as a speaker at autism conferences and well respected as a respite care worker. His is PDA autism. (Not Asperger syndrome). I can't begin to explain how much he's brought to our lives, watching him finding his own ways to steer a course round life's obstacles. Tackling national level rugby, and having studied Psychology & Counselling for his Degree. [So much for the myth that autistic people can't possibly understand others...]
I shouldn't be here. There have been so many times in my life when I could have been dead. But I'm still here. Not smug about that - just astonished. And I still keep working towards a world where autistic people are recognised as the lovely people that most are. Given the same chances. Allowed to thrive and love, and contribute, in whatever form they best can. Kept safe from some of the appalling targeting, bullying and abuse that most of us have survived. Enough about that, though.
Do I have all the answers? No. No-one does. But 20 years of working with fabulous autistic and disabled people of all kinds - and my sets of experiences - has given me plenty of insights.
Am I important? I hope not. If it's 'about me', something's gone wrong. It should be about everyone working together and bringing their own selves to that. Each equally respected. Do I want fame and fortune? No thanks. I hide if there's too much focus on me. I regularly turn down invitations to speak on radio, etc. I'd prefer not to be on media at all, but I can't think how else to help get information out there.
Will I always phrase things 'correctly'? No. I think in pictures, not in words, so it can take me a couple of attempts to write something. And, I often speak in autistic, not non-autistic, so my communication will be different sometimes. It's never meant to be rude. Not to anyone at all.
There's more to say about life, particularly how I'm involved in LGBTQ groups, working towards a world where there is equality of love and relationship for gay and lesbian couples, etc. Sometimes you'll note me identifying as part of this community....whilst married faithfully to a lovely man. That's a back-story that is for another time. No, it wouldn't make tabloid headlines.
So, your question is this: Can a non-verbal and autistic child from a background of poverty go on to make a small difference in the world?
Can your child?
Assume competence. Even if you cannot imagine for one second how that future is going to happen. I couldn't for a moment have imagined being MD of a national company, when i was that child. Nor being a national speaker on this subject. I am truly blessed with all of the people around me who have made that possible.
Thank you for listening. I hope that a small amount of it has been helpful in some way.
Thursday, 17 August 2017
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-accessible 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 no expert, like you are, but let me explain in any case".
Saturday, 12 August 2017
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.
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.