This is such an important one.
Anyone can be 'vulnerable'. Anyone at all. For example, if someone is a patient at a hospital, or in a dentist's chair, they count as 'vulnerable' during that time.
It is not true to say that if someone counts as 'vulnerable', they must be incompetent, a danger, someone who cannot be trusted. Well, not unless we have that view about every single person on the planet.
Vulnerability is about not being able to protect ourselves in particular situations. Some people who have a disability will be vulnerable in some situations. The term for it is often, "An adult who may be vulnerable".
Autism certainly does make us more vulnerable than usual to predators, for example. Not being able to see faces and expressions well is a huge disadvantage. And our social 'clumsiness' is a signal to predators that we could be an easy target.
But that vulnerability is nothing to do with our personal integrity, or our skill set.
I've seen some really appalling thinking from some individuals over the years. The sort of thinking that puts all people like me into the, "...oh that sort of person can't be trusted - they will always need supervising" thing. Or the, "Gosh, I'm alone with Ann - could I be sued for it?" nonsense. Well, it is.
No autistic person ever gained extra safety by ordinary everyday people being afraid of us, afraid of being with us, or denying us humanity and rights. That's not what safeguarding is for. That's not what the term 'vulnerable' means, or should lead to.
Vulnerability means an opportunity to respect an area of possible difficulty for that person.
It may mean a person who could have the most enormous talents and skills to bring to a situation, but who simply cannot see people very well. Or may have difficulty communicating in some situations. And we all do, as humans, don't we. With autism, those difficulties may be specific. That's the difference.
Watching out for predators targeting us? That's handy.
Making sure we are working within our area of skill and training? That's great.
Don't do the, "Gosh, they're all incompetent" thing. It's not true. At all.
Friday, 18 September 2015
Monday, 14 September 2015
Autism Basics. When "I'll be back in five minutes" isn't true.
So many myths about autism. And quite a lot of really standard stuff was never public knowledge.
Giving us inaccurate information about timings?
I will generalise, because there will be exceptions . This is common to most of us, though.
For example, you tell an autistic person that you will be 'back in five minutes'. It's an expression, yes? It doesn't mean 'five minutes'. Except it does, to us. It means precisely five minutes. We are so literal. Even as adults. When it gets to 4 mins 50 seconds, it's very exciting, because you'll be back in ten seconds. When it gets to 5 mins, you will return. Except, what if you don't? Well, that's...er...a mystery, because you're not here. And then, the panic sets in. And builds, and builds, and builds.
It may seem like a psychological problem, or a 'controlling personality issue'. It's not. It is unfortunate that so many people got diverted into counselling and therapies incorrectly for this kind of thing.
All day, every day, we are balancing a brain whose wiring is connected up for fine detail, not social stuff. For repetition and total accuracy, not sensory overload. It is a real physical brain wiring difference.
Dealing with people? That takes anticipation about how to speak and what to say. About what body language and eye contact to try to interpret. About what voice tone to listen for. Lots of anticipation. We have to calculate days or hours in advance how much brain wiring overheat we can handle for a social situation that others take for granted. How long will ou will you be with us for? We do want to be with people, honest we do. But it's so hard to manage, with a brain that overheats in busy, noisy, social places. The more you are with us, making eye contact and expecting the correct social response? Well, that's huge work for our brain wiring. It heats up, and up , and up, until it causes very real pain. It then cuts out our ability to communicate well, and leaves us exhausted and dazed.
Also, we're possibly waiting in sensory hell for you. Probably under fluorescent lighting, in a busy, noisy space. Schools, shops, cafes, restaurants, workplaces. Waiting for that five minutes to be up. We've left enough 'calculation room' to handle five minutes of pain in that space. We can do that. Then, you don't show up. Now, we've no idea how much pain we will be in, or for how long.
No wonder we get anxious. So would you, if your brain did that.
Be accurate, or suitably vague. If you do not mean 'five minutes', please don't say it's five minutes. Say, "I will be back before..." (whatever time is the latest you can possibly imagine for this). Or "I will be back within 5-15 minutes". If that changes, let us know.
Being accurate may seem like a huge imposition. It's because you are not living with a brain that overheats/electrocutes you when left in difficult environments for too long. Or with impossible social situations to calculate for too long. Ours does.
Respect that it's a physical brain difference, not an attitude problem, and you'll find we are wonderful friends and colleagues to be with. We'll learn to trust what you say, and we can do really good calculations around how much input there will be.
So many meet people like me with no idea how much work we have to do to be friends and work colleagues with you. It's an honour and a joy to spend time with people. But it really helps when people know the basics.
Giving us inaccurate information about timings?
I will generalise, because there will be exceptions . This is common to most of us, though.
For example, you tell an autistic person that you will be 'back in five minutes'. It's an expression, yes? It doesn't mean 'five minutes'. Except it does, to us. It means precisely five minutes. We are so literal. Even as adults. When it gets to 4 mins 50 seconds, it's very exciting, because you'll be back in ten seconds. When it gets to 5 mins, you will return. Except, what if you don't? Well, that's...er...a mystery, because you're not here. And then, the panic sets in. And builds, and builds, and builds.
It may seem like a psychological problem, or a 'controlling personality issue'. It's not. It is unfortunate that so many people got diverted into counselling and therapies incorrectly for this kind of thing.
All day, every day, we are balancing a brain whose wiring is connected up for fine detail, not social stuff. For repetition and total accuracy, not sensory overload. It is a real physical brain wiring difference.
Dealing with people? That takes anticipation about how to speak and what to say. About what body language and eye contact to try to interpret. About what voice tone to listen for. Lots of anticipation. We have to calculate days or hours in advance how much brain wiring overheat we can handle for a social situation that others take for granted. How long will ou will you be with us for? We do want to be with people, honest we do. But it's so hard to manage, with a brain that overheats in busy, noisy, social places. The more you are with us, making eye contact and expecting the correct social response? Well, that's huge work for our brain wiring. It heats up, and up , and up, until it causes very real pain. It then cuts out our ability to communicate well, and leaves us exhausted and dazed.
Also, we're possibly waiting in sensory hell for you. Probably under fluorescent lighting, in a busy, noisy space. Schools, shops, cafes, restaurants, workplaces. Waiting for that five minutes to be up. We've left enough 'calculation room' to handle five minutes of pain in that space. We can do that. Then, you don't show up. Now, we've no idea how much pain we will be in, or for how long.
No wonder we get anxious. So would you, if your brain did that.
Be accurate, or suitably vague. If you do not mean 'five minutes', please don't say it's five minutes. Say, "I will be back before..." (whatever time is the latest you can possibly imagine for this). Or "I will be back within 5-15 minutes". If that changes, let us know.
Being accurate may seem like a huge imposition. It's because you are not living with a brain that overheats/electrocutes you when left in difficult environments for too long. Or with impossible social situations to calculate for too long. Ours does.
Respect that it's a physical brain difference, not an attitude problem, and you'll find we are wonderful friends and colleagues to be with. We'll learn to trust what you say, and we can do really good calculations around how much input there will be.
So many meet people like me with no idea how much work we have to do to be friends and work colleagues with you. It's an honour and a joy to spend time with people. But it really helps when people know the basics.
Saturday, 12 September 2015
Worth more than gold
It's a difficult one, worth, isn't it.
What's someone worth?
What's someone like me worth?
Autism has its wonderful naivety. If someone asked me what someone like you was worth, I'd say, "More than all the gold in all the world".
But if someone in some faith groups is asked what I'm worth, the answer often comes in at, "Well, not as much as £6" "£4 is too much, obviously" "Really she should be free, or be paying us for the inconvenience of enduring her and her disability needs".
As if we are just lumps of meat with no feelings. As if being given this message day after day would have no impact. Over a lifetime.
It's a difficult thing, standing up in front of a group of people as the real live example of 'not worth anything'. The days to prepare ourselves, and the time afterwards to recover. Explaining to people that I cannot even see who they are. Narrating the difficulties I have with everyday life. Talking about the way we are targeted through that naivety. Taking all the highly personal questions about my private life. Somewhere deep inside, we end up feeling dirty, and used, and worthless during the process of being the 'live exhibit'. As trainers, we fall out of training classes for some groups both delighted to have had the chance to change society....and exhausted and demoralised beyond measure. Because there are so few support mechanisms in place, we try to 'prop one another up'. Not many have the strength to keep getting up and doing the job.
But there's so often someone who pops up, brightly, to say how grateful I should be to have been allowed to even apply to do their work for less than my costs. I should say thank you nicely, they prompt. Where are my manners, eh.
There isn't anger behind my response. There is just a numb despair, and tears.
There isn't anger behind my response. There is just a numb despair, and tears.
We do it because we don't want a world of pain for our youngsters any more. I also do it because I believe God loves people like me, and values us. And this is the only way to get the starting point. The only way to get people to move past the 'they are not worth our cash' thinking. No-one autistic gets rich from doing autism training. Many of us give our time for only enough to feed ourselves the basics from one day to the next, if it makes a difference. Quite often, even that is 'too much', it seems. What are we worth?
You are worth more than all the gold in all the world. Yes, you.
And so, my question to you, is....what am I worth to you? And to God?
One big question to pray on, deeply, over time.
Monday, 7 September 2015
Non-Autistic Autism Experts: How to get it right...and wrong
The great thing about the last couple of years? Autistic experts are now equal leaders in autism work.
For decades, we were too often treated as lab specimens or patients by far too many non-autistic professionals. Not all did so. A good number have always been marvellous partners for us in the work.
The others? Many reached some extraordinary conclusions about us, nearly all of which were entirely mistaken. For example, that we lacked empathy. Unfortunately for them, they'd missed that we cannot see people's faces properly. No wonder we couldn't get the response right; we couldn't see whether the person was sad or happy. No different to accusing a Deaf friend of lacking empathy, because they couldn't hear your tone of voice.
Then we had the myths that it was normal for us to spend half our day in meltdown. "Oh, that's autism", they'd say, nodding in a wise way over their pince-nez, as we writhed and screamed in pain....and some professionals taught parents and educational professionals how to restrain us and punish us for being in pain. "Those autistic people are trying to control others with their nasty behaviour!", they claimed. No. Unfortunately for them, they had missed all the sensory processing pain that we experience. Then would put us in schools, colleges, workplaces and residential settings that caused intense internal pain for us. They had missed that we were effectively being asked to be in pain all day, every day. They had it totally wrong. That's what happens when some don't have lived experience of autism, and don't listen.
After so many years of clumsy mistake-making, little wonder that there is a new respect for the autistic professionals. People who have a lived experience of autism. People who work together with non-autistic professionals to bring about the best possible training. And the best possible consultancy. And the best possible science, creativity, art, music, teaching.... People who use autism's strengths of honesty, integrity, persistence, creative thinking and accuracy to ensure the very best ideas and teamwork are available. People who know how to value those who communicate differently, and can work well in teams of autistic people from all parts of the spectrum. There have been a good number of non-autistic professionals who can do all of those things too, of course. But they will never know what it is like. It's like hiring in white people to speak for the BME communities. Or hiring just men to speak for women.
How to be a fantastic non-autistic professional? And what to avoid?
Treat us like the human beings we are, not as a patient. We are not 'patients'. We are people with a different brain wiring design, from birth. It has strengths as well as challenges in a loud, busy world. Be properly, genuinely friendly with us. If we are colleagues, then yes, we want a friendly working relationship with you.
Treat us with respect. Value what we have to offer, rather than dismissing it as irrelevant.
Listen to what we say, and assume that it is the truth. No, we are not likely to be lying to you. No, we are not likely to have a poor grasp of reality. We are hugely accurate, if allowed to answer in ways that respect our needs.
Stand up for us when others seek to humiliate us and treat us as if we are worth nothing.
Assume that we are worth our pay. We are not 'grateful' to be allowed the chance to work for nothing. Or for a discount. What we offer is as valuable as it would be from anyone else.
Do not lie to us, thinking that it doesn't matter what you say to an autistic person.
Do not mistreat us, thinking that we will never be believed, so what does it matter.
Include us in meetings and events. It is never OK to leave us out, claiming it was 'too difficult' or that you would 'tell us what happened'. Find a way to make that meeting autism-accessible. It's not hard.
Find out our needs. Respect our communication, sensory and routine-based needs, in particular. People who force eye contact on us and never give us a chance to process what's being said? That's not OK. Meetings where everyone chatters away and we can hear nothing of it? How is that fair?
Do not throw your Titles at us. So you have a lot of letters after your name and are a Dr or Professor? Perhaps we are too. But we aren't bothered by such social constructs. Generalising, of course. We don't judge the worth of a person by their title, their bank account balance, their accent or which University they went to. Those are not relevant to the worth of a person. We tend to be passionate about fairness, about justice, about creating a world where all are fed, warm, loved and safe. I get a lot of people who assume that I must be stacking shelves in a supermarket with careful supervision. I run a £3 million a year Professional Practice. I'm very autistic. As a child, I was that girl that rocked in corners and couldn't speak.
Learn. Keep learning. Keep observing, because you are learning from the real experts. The people who now train you in how to diagnose autism. The people who now provide you with the written materials you use to get those qualifications. The people who work alongside you in industry and schools, in academic work and creative pursuits. People of all kinds and personalities. The quiet ones who use assisted communication or cannot use language? Think they have nothing to offer? Look again. Keep looking, keep learning. There is such a wealth of wisdom, friendship and joy to be found. If only more people would stop putting us in huge pain and fear. If only building designers would take autism into account, and not just wheelchair users.
My fabulous autistic colleagues are now respected as co-leaders in this field of work, alongside you. That's to be celebrated, and respected, and rewarded with proper pay and proper employment.
For decades, we were too often treated as lab specimens or patients by far too many non-autistic professionals. Not all did so. A good number have always been marvellous partners for us in the work.
The others? Many reached some extraordinary conclusions about us, nearly all of which were entirely mistaken. For example, that we lacked empathy. Unfortunately for them, they'd missed that we cannot see people's faces properly. No wonder we couldn't get the response right; we couldn't see whether the person was sad or happy. No different to accusing a Deaf friend of lacking empathy, because they couldn't hear your tone of voice.
Then we had the myths that it was normal for us to spend half our day in meltdown. "Oh, that's autism", they'd say, nodding in a wise way over their pince-nez, as we writhed and screamed in pain....and some professionals taught parents and educational professionals how to restrain us and punish us for being in pain. "Those autistic people are trying to control others with their nasty behaviour!", they claimed. No. Unfortunately for them, they had missed all the sensory processing pain that we experience. Then would put us in schools, colleges, workplaces and residential settings that caused intense internal pain for us. They had missed that we were effectively being asked to be in pain all day, every day. They had it totally wrong. That's what happens when some don't have lived experience of autism, and don't listen.
After so many years of clumsy mistake-making, little wonder that there is a new respect for the autistic professionals. People who have a lived experience of autism. People who work together with non-autistic professionals to bring about the best possible training. And the best possible consultancy. And the best possible science, creativity, art, music, teaching.... People who use autism's strengths of honesty, integrity, persistence, creative thinking and accuracy to ensure the very best ideas and teamwork are available. People who know how to value those who communicate differently, and can work well in teams of autistic people from all parts of the spectrum. There have been a good number of non-autistic professionals who can do all of those things too, of course. But they will never know what it is like. It's like hiring in white people to speak for the BME communities. Or hiring just men to speak for women.
How to be a fantastic non-autistic professional? And what to avoid?
Treat us like the human beings we are, not as a patient. We are not 'patients'. We are people with a different brain wiring design, from birth. It has strengths as well as challenges in a loud, busy world. Be properly, genuinely friendly with us. If we are colleagues, then yes, we want a friendly working relationship with you.
Treat us with respect. Value what we have to offer, rather than dismissing it as irrelevant.
Listen to what we say, and assume that it is the truth. No, we are not likely to be lying to you. No, we are not likely to have a poor grasp of reality. We are hugely accurate, if allowed to answer in ways that respect our needs.
Stand up for us when others seek to humiliate us and treat us as if we are worth nothing.
Assume that we are worth our pay. We are not 'grateful' to be allowed the chance to work for nothing. Or for a discount. What we offer is as valuable as it would be from anyone else.
Do not lie to us, thinking that it doesn't matter what you say to an autistic person.
Do not mistreat us, thinking that we will never be believed, so what does it matter.
Include us in meetings and events. It is never OK to leave us out, claiming it was 'too difficult' or that you would 'tell us what happened'. Find a way to make that meeting autism-accessible. It's not hard.
Find out our needs. Respect our communication, sensory and routine-based needs, in particular. People who force eye contact on us and never give us a chance to process what's being said? That's not OK. Meetings where everyone chatters away and we can hear nothing of it? How is that fair?
Do not throw your Titles at us. So you have a lot of letters after your name and are a Dr or Professor? Perhaps we are too. But we aren't bothered by such social constructs. Generalising, of course. We don't judge the worth of a person by their title, their bank account balance, their accent or which University they went to. Those are not relevant to the worth of a person. We tend to be passionate about fairness, about justice, about creating a world where all are fed, warm, loved and safe. I get a lot of people who assume that I must be stacking shelves in a supermarket with careful supervision. I run a £3 million a year Professional Practice. I'm very autistic. As a child, I was that girl that rocked in corners and couldn't speak.
Learn. Keep learning. Keep observing, because you are learning from the real experts. The people who now train you in how to diagnose autism. The people who now provide you with the written materials you use to get those qualifications. The people who work alongside you in industry and schools, in academic work and creative pursuits. People of all kinds and personalities. The quiet ones who use assisted communication or cannot use language? Think they have nothing to offer? Look again. Keep looking, keep learning. There is such a wealth of wisdom, friendship and joy to be found. If only more people would stop putting us in huge pain and fear. If only building designers would take autism into account, and not just wheelchair users.
My fabulous autistic colleagues are now respected as co-leaders in this field of work, alongside you. That's to be celebrated, and respected, and rewarded with proper pay and proper employment.
Saturday, 15 August 2015
On making it impossible for us to do a task, then blaming us
Over the decades, as an autistic adult, I've had some unusual experiences with non-autistic leaders.
Many good experiences, with many good leaders, of course. But goodness me, there's been some very odd thinking, from a few.
I am a very persistent person. It takes a lot to get me to back away from something. It's never done lightly. This is common in autism; persistence, dedication, integrity and accuracy are our 'thing' (generalising). Yes, autistic people have our fair share of challenges to overcome, but it usually comes with good stuff too.
I've co-owned and run a Professional Practice for more than 15 years. That involves immense dedication, teamwork, accuracy etc. I won't claim it has been easy. But together, we've created something that we are so very proud of.
I've been married for 27 years to a lovely other half and we have brought up a marvellous 22 yr old autistic son. Those things take dedication and integrity too. Especially for someone like me who was born with a different sexuality.
I was Trustee of two major charities. One, for many years.
I was Governor of a large Primary School for many years.
I've worked as an autism adviser for some 20 years, doing consultancy work and training for a large number of organisations including the Government, Royal Collection, National Trust, BBC...in fact, most of the 'big names'.
All of it takes teamwork, integrity, persistence and having something to offer. I could do none of it without the fantastic people who work with me, or lead those groups and enable me to give of my best. I'm not the most important person in any of those settings - but people want to know what I can bring. And I'm happy to do that.
And yet...the unusual experiences have been there.
One large group who have spent the last eight years trying to convince themselves not to talk to me, in case I am dangerous or too much of a burden (No, I kid you not. It's been entertaining, and worrying, in equal measure).
One other large group who invited me to be Chair of their enterprise...dumped the whole job and two others on me without a moment's handover...held meetings in a totally non-autism-friendly way... and wondered why I handed the job to someone who could do it in that format.
Then blamed me for being 'unreliable'. And told others not to use me.
Let's look closely at that. If people make it impossible for me to do a job, due to my disability, then it's me being unreliable?
So, by that logic, if a group hires in a Chief who is a wheelchair user, and then they hold all the meetings at the top of a flight of stairs, it is in fact the fault of the wheelchair user. Is that right? Well, then it's not right with autism either.
Let's not do this stuff to autistic experts any more, please. If people want our skills and talents, our integrity and accuracy, then their group is going to have to show some respect. The same as we show to them when we communicate in their chosen language (not ours), in their meetings which are held on their terms (not ours).
Blaming us for the errors of others is truly not OK. It's the opposite of enablement.
If you are going to ask an autistic expert to help, make sure you ask what they need - and make sure you can offer that. Do not ever think to blame them for not being able to access something.
Many good experiences, with many good leaders, of course. But goodness me, there's been some very odd thinking, from a few.
I am a very persistent person. It takes a lot to get me to back away from something. It's never done lightly. This is common in autism; persistence, dedication, integrity and accuracy are our 'thing' (generalising). Yes, autistic people have our fair share of challenges to overcome, but it usually comes with good stuff too.
I've co-owned and run a Professional Practice for more than 15 years. That involves immense dedication, teamwork, accuracy etc. I won't claim it has been easy. But together, we've created something that we are so very proud of.
I've been married for 27 years to a lovely other half and we have brought up a marvellous 22 yr old autistic son. Those things take dedication and integrity too. Especially for someone like me who was born with a different sexuality.
I was Trustee of two major charities. One, for many years.
I was Governor of a large Primary School for many years.
I've worked as an autism adviser for some 20 years, doing consultancy work and training for a large number of organisations including the Government, Royal Collection, National Trust, BBC...in fact, most of the 'big names'.
All of it takes teamwork, integrity, persistence and having something to offer. I could do none of it without the fantastic people who work with me, or lead those groups and enable me to give of my best. I'm not the most important person in any of those settings - but people want to know what I can bring. And I'm happy to do that.
And yet...the unusual experiences have been there.
One large group who have spent the last eight years trying to convince themselves not to talk to me, in case I am dangerous or too much of a burden (No, I kid you not. It's been entertaining, and worrying, in equal measure).
One other large group who invited me to be Chair of their enterprise...dumped the whole job and two others on me without a moment's handover...held meetings in a totally non-autism-friendly way... and wondered why I handed the job to someone who could do it in that format.
Then blamed me for being 'unreliable'. And told others not to use me.
Let's look closely at that. If people make it impossible for me to do a job, due to my disability, then it's me being unreliable?
So, by that logic, if a group hires in a Chief who is a wheelchair user, and then they hold all the meetings at the top of a flight of stairs, it is in fact the fault of the wheelchair user. Is that right? Well, then it's not right with autism either.
Let's not do this stuff to autistic experts any more, please. If people want our skills and talents, our integrity and accuracy, then their group is going to have to show some respect. The same as we show to them when we communicate in their chosen language (not ours), in their meetings which are held on their terms (not ours).
Blaming us for the errors of others is truly not OK. It's the opposite of enablement.
If you are going to ask an autistic expert to help, make sure you ask what they need - and make sure you can offer that. Do not ever think to blame them for not being able to access something.
Wednesday, 15 July 2015
Equal Treatment is Not Equal in Effect
In faith settings, sometimes someone says to me, "Oh but we treat everyone the same, so that's evidence that we're fair".
It isn't fair to treat everyone the same. Let me take an example:
Disability advisers. Often in church groups, someone has the idea that a region needs a disability adviser. Not such a bad idea in itself. After all, 40% of parishioners are disabled. The Archbishop has, wisely, said that we need to focus on disability as a key issue. In the CofE, for example, there are an average of 11,000 disabled parishioners turning up to church in every Diocese.
Disability is a big subject with big money. It's why disability advisers to industry are paid a very good sum and are properly accredited after extensive training. Access is a legal liability, the same as it is a legal liability to have fire extinguishers and buildings insurance. The court awards for failing on disability access top £1 million a case in London, for example. Not because disabled people are nasty sorts who like suing people. But because they are already often struggling to cope in unfair systems and inaccessible buildings. Already perhaps unwell or in pain. And making their lives so hard that they suffer further injury or distress - carelessly - is not OK. The Courts are quite clear on this. Places have a legal duty of care, even if no disabled people attend. It has to be planned for in advance, in an expert and considered way. That's the law, and churches have to follow it to the same standards as shops. Well, they do. I don't make the law. But I do think that's right. Jesus was very loving towards disabled people and spent so much time with them. It should never ever be a burden to include the marginalised at God's table.
Disability is also complex. There are many major disabilities, all with different needs. Almost none of them have to be expensive to sort out. But you need people who understand autism, learning disability, mobility issues, visual impairment, hearing impairment, mental health, coeliac disease, epilepsy and a good few other more major ones. Proper training skills, expertise in writing materials, knowledge of buildings access needs for each disability. It takes a whole team working together to do a proper job for a region or Diocese. It needs someone who can put together that team and communicate really well with every department. Properly enabled and with proper authority.
Often, regions decide that the right person for the job is a solitary disabled person, working a couple of hours a month. Then they hunt around for cash to fund it, and decide they can't see any immediately. So the next idea is that the person will work for free.
"But that's not fair!", some people will say. "Oh yes it is", they respond, "After all, we don't pay some of our clergy".
There it is. Right there. The thing where equal treatment is not equal.
Disabled people already, as a group, live in poverty. In some disability groups, only 5% are in full time employment. They already mostly live with pain or loss of function. They already live with bullying, marginalisation and abuse. They already mostly live on the margins of church, often unable to access it. They may well have children who also live with disability in a society that doesn't adapt for it. And some turn to this extremely disadvantaged group and say, in effect, "If you want to go to churches, you can work for free to make them accessible".
Equal treatment is not the same as fair treatment. At all.
Be very wary about asking disabled people to work for free. Especially if asking that they have no employment rights, no proper ongoing structured industry-standard training from qualified experts. A day at the start of the job isn't it. No insurance cover? No access to a support network? No access to counselling or spiritual direction? Especially if there is no planning for what happens if it goes wrong....if someone sues. Who gets sued? The church? The Diocese? The disabled volunteer? I've seen that happen.
It's not a couple of hours a week to do the job. We're asking people to go to some 400 churches per Diocese and train hundreds of staff to legally-accountable standards.
The church is not a corporation with a lot of cash. But if we can find money for fire extinguishers and insurance without complaint, and understand that those help save people from injury, do we need to make disabled people work for free...and claim that this is their Christian duty?
Or is it our duty to make sure that the most vulnerable, the most marginalised in our churches are not taken advantage of as a group? Even accidentally?
It's a justice issue. We need to think very carefully what we, as a faith group, say about the worth of especially marginalised people.
It isn't fair to treat everyone the same. Let me take an example:
Disability advisers. Often in church groups, someone has the idea that a region needs a disability adviser. Not such a bad idea in itself. After all, 40% of parishioners are disabled. The Archbishop has, wisely, said that we need to focus on disability as a key issue. In the CofE, for example, there are an average of 11,000 disabled parishioners turning up to church in every Diocese.
Disability is a big subject with big money. It's why disability advisers to industry are paid a very good sum and are properly accredited after extensive training. Access is a legal liability, the same as it is a legal liability to have fire extinguishers and buildings insurance. The court awards for failing on disability access top £1 million a case in London, for example. Not because disabled people are nasty sorts who like suing people. But because they are already often struggling to cope in unfair systems and inaccessible buildings. Already perhaps unwell or in pain. And making their lives so hard that they suffer further injury or distress - carelessly - is not OK. The Courts are quite clear on this. Places have a legal duty of care, even if no disabled people attend. It has to be planned for in advance, in an expert and considered way. That's the law, and churches have to follow it to the same standards as shops. Well, they do. I don't make the law. But I do think that's right. Jesus was very loving towards disabled people and spent so much time with them. It should never ever be a burden to include the marginalised at God's table.
Disability is also complex. There are many major disabilities, all with different needs. Almost none of them have to be expensive to sort out. But you need people who understand autism, learning disability, mobility issues, visual impairment, hearing impairment, mental health, coeliac disease, epilepsy and a good few other more major ones. Proper training skills, expertise in writing materials, knowledge of buildings access needs for each disability. It takes a whole team working together to do a proper job for a region or Diocese. It needs someone who can put together that team and communicate really well with every department. Properly enabled and with proper authority.
Often, regions decide that the right person for the job is a solitary disabled person, working a couple of hours a month. Then they hunt around for cash to fund it, and decide they can't see any immediately. So the next idea is that the person will work for free.
"But that's not fair!", some people will say. "Oh yes it is", they respond, "After all, we don't pay some of our clergy".
There it is. Right there. The thing where equal treatment is not equal.
Disabled people already, as a group, live in poverty. In some disability groups, only 5% are in full time employment. They already mostly live with pain or loss of function. They already live with bullying, marginalisation and abuse. They already mostly live on the margins of church, often unable to access it. They may well have children who also live with disability in a society that doesn't adapt for it. And some turn to this extremely disadvantaged group and say, in effect, "If you want to go to churches, you can work for free to make them accessible".
Equal treatment is not the same as fair treatment. At all.
Be very wary about asking disabled people to work for free. Especially if asking that they have no employment rights, no proper ongoing structured industry-standard training from qualified experts. A day at the start of the job isn't it. No insurance cover? No access to a support network? No access to counselling or spiritual direction? Especially if there is no planning for what happens if it goes wrong....if someone sues. Who gets sued? The church? The Diocese? The disabled volunteer? I've seen that happen.
It's not a couple of hours a week to do the job. We're asking people to go to some 400 churches per Diocese and train hundreds of staff to legally-accountable standards.
The church is not a corporation with a lot of cash. But if we can find money for fire extinguishers and insurance without complaint, and understand that those help save people from injury, do we need to make disabled people work for free...and claim that this is their Christian duty?
Or is it our duty to make sure that the most vulnerable, the most marginalised in our churches are not taken advantage of as a group? Even accidentally?
It's a justice issue. We need to think very carefully what we, as a faith group, say about the worth of especially marginalised people.
Sunday, 12 July 2015
Nothing to learn about God here...move along..?
Sometimes I have an awkward conversation with church folk.
I ask to join in, saying that there are an awful lot of autistic people, and our voices count too.
For example, some 10% of LGBT+ people are autistic. Are we represented at the Shared Conversations on CofE LGBT matters? No-one knows. No-one has asked, it seems. Maybe we are, maybe we're not. Who can tell.
And normally there's someone who says, "Why should autistic people get a special mention? If you get a place, what about me? After all, I have diabetes, so why don't we have a special number of places for diabetic people? Or people who enjoy going to the theatre? We can't cater for every group, as it's just ridiculous".
Is it? It betrays an extraordinary lack of knowledge of autism. And of God, I'd argue.
Autistic people encounter God and faith differently. We have a different sensory system. We see differently. We hear differently. We are affected by texture, smell and physical contact differently. We process words differently. We see people differently (often being faceblind for example, and not able to recognise folk from their faces alone). We are rule-driven, not social-relationship-driven, and that means that our reading of the Bible is different. We socialise differently. We form relationships differently. Not in 'broken ways', but ways that represent something new, something amazing to learn about. Truly amazing.
What of God is represented in what we encounter? What of His word can we learn anew by listening to our 'take' on the Bible?
How does the word of Scripture sound to autistic lesbian ears?
How do faith images impact on eyes that see colour and texture differently?
What is it like to live with multiple disadvantages, from birth - in church life?
Is 10% of a group 'too small' to think about including?
What do we lose by not asking, by not including?
It's tempting to see autistic people as just asking to be included in order to make a point. In order to be a nuisance. As some annoying group asking to be 'catered for'. But it's not that.
It's about having something so worthwhile to contribute. It's about us hearing something really important about how we fail to see really big groups of people (some 300,000 of us in the country who are autistic and LGBT). It's about who has the right to decide things for us, without asking us or consulting with us. It's about who gets to impose pain and fear on us, quite accidentally, because they failed to ask our needs too.
No, it's not like leaving out people who are keen on hockey, or those who prefer the 8am service to the 10am service. It's about a group of people who are routinely bullied, excluded, assaulted, marginalised, forgotten and mostly live in abject poverty. And about a church that needs to do better than, "Well, your voice doesn't matter". If no-one has ever listened, how do we know?
I ask to join in, saying that there are an awful lot of autistic people, and our voices count too.
For example, some 10% of LGBT+ people are autistic. Are we represented at the Shared Conversations on CofE LGBT matters? No-one knows. No-one has asked, it seems. Maybe we are, maybe we're not. Who can tell.
And normally there's someone who says, "Why should autistic people get a special mention? If you get a place, what about me? After all, I have diabetes, so why don't we have a special number of places for diabetic people? Or people who enjoy going to the theatre? We can't cater for every group, as it's just ridiculous".
Is it? It betrays an extraordinary lack of knowledge of autism. And of God, I'd argue.
Autistic people encounter God and faith differently. We have a different sensory system. We see differently. We hear differently. We are affected by texture, smell and physical contact differently. We process words differently. We see people differently (often being faceblind for example, and not able to recognise folk from their faces alone). We are rule-driven, not social-relationship-driven, and that means that our reading of the Bible is different. We socialise differently. We form relationships differently. Not in 'broken ways', but ways that represent something new, something amazing to learn about. Truly amazing.
What of God is represented in what we encounter? What of His word can we learn anew by listening to our 'take' on the Bible?
How does the word of Scripture sound to autistic lesbian ears?
How do faith images impact on eyes that see colour and texture differently?
What is it like to live with multiple disadvantages, from birth - in church life?
Is 10% of a group 'too small' to think about including?
What do we lose by not asking, by not including?
It's tempting to see autistic people as just asking to be included in order to make a point. In order to be a nuisance. As some annoying group asking to be 'catered for'. But it's not that.
It's about having something so worthwhile to contribute. It's about us hearing something really important about how we fail to see really big groups of people (some 300,000 of us in the country who are autistic and LGBT). It's about who has the right to decide things for us, without asking us or consulting with us. It's about who gets to impose pain and fear on us, quite accidentally, because they failed to ask our needs too.
No, it's not like leaving out people who are keen on hockey, or those who prefer the 8am service to the 10am service. It's about a group of people who are routinely bullied, excluded, assaulted, marginalised, forgotten and mostly live in abject poverty. And about a church that needs to do better than, "Well, your voice doesn't matter". If no-one has ever listened, how do we know?
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