Autism Acceptance Month - Time to Listen

A blog by Ann Memmott, who is autistic, and for ten years, was non-verbal.  Still is, sometimes.  A Christian.

'Autism acceptance month'.  

Some call it 'autism awareness month'.  The autistic community generally do not.  You see, most people are 'aware' of autism.  But the way it's been done, over the last few years, has been largely negative.

I ventured onto social media yesterday, and was met with a barrage of the most appalling things about autism.  Parents, carers and organisations posting up item after item about our 'deficits'.

Summarised:
"Come see Autism Awareness Materials - I'll tell you about my child Sam.  He has toilet issues, he eats dirt, he is violent - this is autism, honest guv".  Complete with pictures of Sam.  Might as well give out Sam's address too.   After all, if we're going to humiliate a child, we might as well do it properly with all the details?  No, that's not a serious suggestion.  It's a comment to make people think.

Stop.
Think.

What is that doing?

Are the people concerned making the lives of autistic people better, by saying humiliating things about their child to the world, using their name and picture?  Are they?  Really?

Do you know the suicide rate for autistic people?  Do you think it could be in any way connected with being brought up by carers who do this kind of thing?

Autistic children are not vegetables.  We see, we hear.  A surprising number of 'non-verbal' autistic children can understand everything they hear, and from a huge distance, thanks to super-sensitive hearing for many.  If you are told you are a deficit, a disaster, a disappointment....if your experience of love is your parent parading you about as a set of problems....telling people how you have destroyed their life...how do you feel?

Autistic people are often told that we lack empathy, lack understanding. Mmm, no.  I put it to you that I see a huge lack of empathy for autistic people, every single 'awareness month'.  People supporting charities that are arguably eugenics-based.  People 'lighting it up blue', and thus supporting an organisation feared by most autistic adults.  People claiming that people like me aren't 'real autistic people' like their child. People saying God will cure us whether we want that or not.  People deciding we all suffer, without consulting us.

We are their child, when their child grows up.  Me and so many other autistic advocates and professionals.  Verbal or non-verbal.  Of all IQs and backgrounds.

And the people who are saying and doing this stuff to their children need to stop and listen.

Yes, we all need better support, funding and training in place, to enable every autistic person and their family/carers to lead good lives.

No, we do not benefit from being listed as a set of disasters in front of the public.

If people tell the public we are nothing but a set of disasters, all two million of us in the UK, then what are we achieving?  Jobs?  No.  Support?  No.  Friendships for us?  No.  We are making it harder than ever before for us to succeed.  We are boosting that suicide rate, and lowering the life expectancy.  It's not working.  At all.

Most autistic people are not violent.  Many work hard for world peace and for charities and faith groups of all kinds.
Most autistic people are not disaster.  We can bring huge strengths and wonderful insights.
All autistic people - whether verbal or not, whether of lower IQ or any other IQ - are much loved children of God.

Most are kind, gentle, generous people.  Sometimes in extreme pain or fear because of the misunderstanding and maltreatment.  That's the suffering - being put into sensory and social environments that cause pain.

All are loved.
All are valued
All are to be respected.

Respect your child.  Say nothing in public that wrecks their chances of respect, friendships and a good future.  Yes, being a carer can be tough.  But think about the impact on your child, from saying what you're saying, in public.  I've lost count of the parents who said to me, "But my child will never talk and will never understand, so it has no impact on them".  Oh my.  Oh dear.  No.  Wrong.

Read good autism acceptance materials, from autistic bloggers and professionals.
Go to good autism events run with and by autistic specialists.
Support organisations that are supported by autistic individuals.
Look for #redinstead and #actuallyautistic or 'Light it up Gold' materials on social media.

Get to know us.  I have never been so proud of a group of people, my autistic family and friends, colleagues and fellow professionals.  Just absolutely wonderful.  And if you start with that attitude, good things happen.

Thank you for listening.



Picture description:   The picture at the top is a box with the words, "Autism Acceptance  - Because we're fabulous'.  There is also a picture of the autism community's chosen symbol, an infinity loop in rainbow colours.  This is a good symbol for autism acceptance, rather than the 'puzzle piece' logo used by some others.

Shocking stuff from 'Inspirational Parent Speakers and Authors'

The photo shows a shocked older woman.  

I'm shocked.  These days, it takes quite a lot to shock me, because I've seen and heard a lot in 20 years as an autism professional.  But today, I read the 'inspirational pages' of a mother whose child is autistic.  The mother in question has devoted a whole page to her Inspirational Achievements, helping parents whose children are autistic.  She has set up a conference about autism, at which there is not one autistic professional.  Not one.  I repeat that because it's worth repeating.

But even that didn't really shock me.  Apparently it's fine to run conferences where every bit of information from professionals is second-hand.

The thing that stopped me in my tracks was her claiming that having an autistic child may cause cancer.  The stress of it all, you see, she says.

Hold it right there.   There is no known direct link between stress and cancer.  We have endless research into this.  So we can safely establish that this is nonsense.

And, children, Mrs Inspirational Autism Mother, will grow up believing that they are responsible for the death of their carers from cancer.  

Do not say things that will damage a child and cause them even more reason to display the 'distress behaviour' you claim to wish to stop.  We have too many autistic young people trying to kill themselves.  Too many parents truly believing that their child cannot hear, and cannot read.  Shocked also that this individual is now a key speaker for the NHS.  

  

Really, NHS?

Sesame Street and Autism

The famous US television show for children, Sesame Street, has introduced an autistic character. The picture above shows "Julia", the young autistic girl, looking at a butterfly. There was some controversy when Julia first appeared in 2015 in some Sesame Street materials.  The autistic communities and organisations in the US have had some input since then.  We shall hope that things go well, in the storylines.

I am delighted to see autistic characters in shows.  I have two concerns about some aspects of this character.   We learn that it's a non-autistic person who does the voice for her and explains what she is feeling.   Why not one of the millions of autistic people, many of whom are excellent trained actors?   

We read that this is about, "people with autism" and "a child with autism".  That's 'people-first language'.  The idea that unless you put the word 'people' in front of the statement, no-one will know that we're people.  Most odd.  So, I'm a person with whiteness, and person with femaleness.  I'm also a person with right handedness, a person with Christianness, and a person with gayness?    Is that the logic of person first language?   Then why don't we say those things too?   

We don't say, "person with femaleness" because we are not ashamed of being female. And we know females are people.  I think we do.  It goes without saying, yes?

In autistic communities and groups, most don't say, "person with autism", because we should not be ashamed of being autistic.  And we know autistic people are people.  Same principle.

I respect that some autistic people want to be called 'person with autism'.  If that is their personal choice, great.  I'm fine with personal choice.  Most do not want to be called that. There's research.  Truly, most don't.  

I respect that for some, their lives are made hell  - with endless socialising forced on them, inappropriate sensory environments, etc.  For some,  autism can seem like a burden.  I'd like a world that respected our needs and was prepared to offer us the courtesy of adaptation.   For those who have long hours as a carer, with little support, I'd like much better support and better training available for families, carers and teams.   Working as hard as I can to help achieve those things.  I have an autistic son.  I know what you mean.  I'm not for one minute saying that there are no challenges, or that everything is easy when you're different.  But all the tragedy-talk?  It's been a disaster.  Truly.  It's done the opposite of what was hoped for.

So, when a show uses 'person first language', it's making a choice.  A choice that says that the majority of autistic people don't get to decide on the language.  What does that say to autistic people?  I'm not sure.  I know it feels uncomfortable.

In the online media today, we see why positive autistic characters are so important. Comment after comment from some of the public, calling autism a disease (it's not - it's a natural variation of brain design).  Others saying we're all a tragedy.  Mmm, no, most autistic people are fabulous. Every single person is loved and of value as a fellow human being.   Others saying that we are an epidemic that needs wiping out.  No, we've always been here, in about the same numbers - we are just better at diagnosing it now.   And others saying it's a mental illness, which it isn't.  So, endless myths still out there.  Much to be done.  For those autistic people, their families and friends who are reading some of the comments, I'm so sorry.  Truly, I want a world where stuff like this isn't said any more.  Little wonder that the suicide rate of autistic people is so high, when we endure such commentary almost every day of our lives.  It needs to stop.  Really, it does.  It helps no-one at all.  We are all worth respect and love.  If you woke up each day to a barrage of, "You're a disease/danger/monster/burden/low functioning cost to society", how would you feel?  

I want to thank the creators of the autistic character on Sesame Street.  I hope that, together, everyone learns a lot about the wonderful autistic people we share our lives with.  Whether verbal or non-verbal.  Whether young or old, male or female, of any IQ and set of abilities.  We're as varied as any other population of people, but also autistic.   Honest, loyal, dedicated, passionate about learning and about our specialist topics, sensing the world differently to others, communicating differently to others - and adding so much to families, friendships, communities and workplaces.

As you're reading about Julia, or watching the show, find out more about autism from really good sources.  Get good training from groups like Autism Oxford UK, the National Autistic Society award winners for 2016.  They train across the country using autistic professionals who I am proud to work with as a senior trainer. Support charities such as the National Autistic Society, who I help advise, quietly in the background.  And get to find out more about the autistic people already in your life.  We're 1 in 30 of the people you already know, already work with, already share friendships with.  You didn't know that?  That's because so many of us are scared of those public reactions...and others don't know they are autistic, yet.

Be an ally.  And a friend.  It really helps.  
Meantime, enjoy the show.

Autism: Access for All

I am passionate about access for all.  Especially to places of beauty, art, music, creativity, faith. So many autistic individuals are quite unable to access many such places.

I am fortunate to work with the Royal Collection's properties such as Windsor Castle, and with National Trust, English Heritage, Glastonbury Abbey and many others.  It's about individuals and their families having confidence that a place is accessible.

The most simple things can turn a lovely day out into a painful and exhausting process for autistic people.  There are some 2 million of us in the UK, of all ages, IQs, male, female and other gender identities.  Nearly all peaceful, kind, thoughtful individuals.

I would commend this two minute video to anyone trying to understand autism.  Autism is mostly a sensory processing difficulty. This is one young person, trying to access a very simple thing - a visit to a coffee shop. https://vimeo.com/52193530  It needs sound, turned up as loud as you can bear.  Most others can 'tune out' background noise, flickering lighting, intense smells.  Our brains cannot.  In such a place, it becomes deafening and blinding, quite literally.  Hence the escape behaviours and pain behaviours that one sometimes sees from a small number of the two million autistic people in the UK.  Many of the rest of us learn to avoid such places, at all costs.

But...if one has to avoid restaurants, cafe's, toilets...then where can one go?  Where is safe?  A visit that turns into a hungry, thirsty, desperate experience is no fun for anyone.

A good audit takes a very short amount of time.  It gives places a clear idea where the 'hazard areas' are going to be.  They can then make a judgement on how to improve this (often cheaply), or how to direct people to somewhere easier to cope with.     Armed with this information, people can make a decision on their own safety and wellbeing.  Very simple, very good news for all.   Why for all?  Because once people have made a place less of a sensory nightmare, it benefits everyone.  We saw this clearly with visitor numbers for 400 historic buildings.  Those which were 'autism friendly' saw their visitor numbers rise.

How to achieve this?  One goes to an autism access specialist, as most disability access advisers are not able to detect the hazards.  Autistic individuals can hear and see differently, and if you are not able to do that, you will miss things.  It's why it is vital to work with us, not guess.  Often, non-autistic parents or local non-autistic charity leaders are asked to tell a place what would help.  Mostly, their view is that places need lots of things for children.  Yes, it's lovely to have a play area.  But most autistic people are adults, some of us very senior businesspeople, and us playing on the swings is not an especially good idea. OK, it is fun....but....

Non-autistic parents then wonder why their children are often still screaming at the end of a visit.  Or have run away.  Or have injured themselves because they could not see a hazard.  Easy; the non-autistic parents cannot see the sensory hazards, so inadvertently dragged the child through a set of very painful and exhausting zones.  Without any idea, for that child, when the pain is going to stop.  Wouldn't you perhaps scream, fight and run?   Most autistic individuals don't.  They 'shut down' instead.  We become unable to communicate our needs, and can just stop moving.  It is because our brain shuts itself down to save further pain.   It's a terrifying experience for us, and dangerous. Either way, it's a situation that is easily avoided.

This is a fast hand drier.  Lots of places install them in the loos.  Result - many autistic people cannot access the space.  It sounds like a jet aircraft taking off, right next to us, unexpectedly.  So loud that we are forced straight into a brain event. If one knows about this, one can avoid purchasing them.   One can otherwise direct to an accessible toilet where there are paper towel alternatives.   It's easy to start to think round the challenge.

 

Designing a building?  Start by asking an autistic consultant to work with the project team, so that you can avoid costly errors that may lead to injury or worse for autistic individuals of all ages.  We can assess buildings at the planning stage, or at any stage of fix and fitting thereafter, ensuring that light, sound, airflow and space considerations work for all users to the benefit of all, and with minimum extra cost.  Did you know that changing the handles and bannisters can make a huge difference, for example?  Or that a simple change of colour from intense white to a softer shade with good contrast to edges can help autistic people as well as most others?  Installing a Building Management System to control heating, air conditioning, etc?  Take advice on noise levels, vibration considerations, etc.

 

Much of the existing design information around autism was based on the old standards from decades ago, when there were the myths that we all had learning disabilities and all lived in care homes.  Only 2% of autistic people fit that description.  The rest of us are right here, next to you.

It is good for business, it is good for PR, and most importantly, it means fewer of your visitors will be in a state of pain and exhaustion after a visit.  Fewer injuries, more profit.  More members, bringing more of their family and friends, and having a fabulous, cheerful time.

Autistic people would love access to the same beautiful things as everyone else.  Often, we are the artists, the sculptors, the musicians, the people who have the ability to donate monies.  Then, we find we are unable to access the very events that promote the work.   As the saying goes, "Industry without art is brutality".  

I'd like a less brutal world for us all.  Would you?

Joining The Feast

"Nothing about us, without us".
That's a phrase we hear, often.  Yet, we get a lot of people writing books about autism and faith who are not autistic, and who do not write with us.  We also get a lot of people who are not disabled writing faith books about disability, without disabled people.  Or, giving conferences about disability with whole teams of not-disabled people.  Or, even worse, with anti-disabled-people groups, whose job is to make us invisible, without our permission.  Using us as tragedy stories.  It's great to have allies.  Collaborative working is great.  Being written about, without our input, not great.

I'm a strong believer in the right of autistic people to choose for themselves.  To choose whether to follow a good faith.  To choose whether to worship.  To choose not to.  To choose, with the best possible information to allow that choice.  My own faith is Christian.  

Faith books written by parents of autistic children are great, but they are not by us.
Faith books written by 'Experts on Autism' are great, but they are not by us.

I'm mindful of some of these expert academics having huge influence.  If they write that autistic people cannot possibly be Christian unless they can speak, well - lots of people are going to believe that.   Then, we have a problem.  Because once we have said that autistic people can't be Christians without speech, it's easy to move to, 'Well, they're not really humans, are they.  Why would God have a relationship with them'.  We know what happens when we dehumanise populations.  Autistic people already die on average 16 years early because of the lack of understanding of our needs.   

The lack of understanding of our faith needs is a part of that.  

I was aware of God well before I could speak.  Well before I could work out what other people were.  God has no difficulty at all in communicating with people of all kinds.

It is so important that the faith, the understanding, the prayer, the leadership and the worship of the wonderful autistic population is heard.  Heard without being filtered out by non-autistic people.  Heard without being altered.  Heard, authentically, richly, powerfully. One of Jesus's good friends was autistic.  And even after Jesus died, Nicodemus was still autistic.  So much for the need to pray for our cure, eh?

I have been honoured to be alongside Helen Tyers, Theologian and friend, for some years.  We met when co-running disability theology retreats at Sarum College, next to Salisbury Cathedral, with many fine others.

We are setting up a theology project around autism.  Its title, "Joining the Feast". A website, an 'Appetiser' paper, a book.

Others are of course doing their own work on this.  We are not claiming to be the first ever.  

It is a starting point for collaborative working with others.  For others to explore the ideas, to grow in confidence to say how their faith journey is.  To be able to share with others who want to hear and read what they want to say.  For them to build in confidence that they do indeed have something to say, or write, or draw, or use music or dance or movement to express.

It will not be about getting awards, or being cited in academic documents, or winning funding.  It will not be about getting our names in the media, or earning money.

It's about God, Jesus, autism.
It's about love.
It's about the banquet for all.

More in a week or two.

The picture at the top is of a stained glass window, showing a lit candle, bread and wine.  Around it, a circle showing rainbow colours.

Sexuality and Religion - Thoughts after the Church of England Paper

Autistic LGBT people.
Some 600,000 of them in the UK.  (On the latest figures of 2 million autistic people, a third of whom self-identify as lesbian, gay, bisexual, transgender, asexual, neuroqueer or otherwise).

As we know, autism is not a mental health condition, nor a learning disability.  Nor is it anything to do with violence and 'bad behaviour'.  Those were old myths, long since debunked.

Autism is a neurodiversity, as confirmed in medical journals such as The Lancet, recently. Part of natural human diversity of brain design, with strengths as well as challenges. Generalising from that research...more moral, more honest, more fair, a great love of learning, creativity, passionate focus on topics, expertise.  So many of our top specialists in society are autistic.  Half of autistic people are female.  You didn't know this?  You had been told myths?  Yes, many were.

It is a brain design built for accuracy, fact-checking, fast detecting of tiny changes and incorrect information.  Our senses are often super-wired to detect the very first hint of smoke, the first taste of food that is going off, the first sound of approaching danger.  In older societies, we would have been of immense value.

Since the false medicalisation of all autistic people in the last couple of decades, our uses have mostly been forgotten.  So many people have been bamboozled (I love that word...) into thinking that all of the two million autistic people in the country are just like a 'badly behaved young boy'.

We're not.  We never were all like that.  I'd argue hardly any are, from my 20+ years as a professional in this work.  Most are lovely, reflective, kind, empathetic, dedicated. 

Many autistic people became marginalised, forgotten, ignored, pitied, hated.   Most die some 16 years earlier than others, because of the appalling misunderstandings and lack of training of the health profession.  Many of us are working very hard to improve things.  

Most, thanks to those myths, have few, if any, friends, so a marriage or loving faithful Civil Partnership becomes all the more precious, all the more our way of showing our love for a cherished other.

A third are part of the LGBT+ community, on the figures we see.  
We're as likely as anyone else to be people of faith, whether that is Christian, Jewish, Muslim or anything else.

 We know from brain scans that, generally, autistic brains are often not of specific male/female design.  The design is different. We've not even begun to explore what God is doing here.

There are a variety of Christian views on what God thinks of LGBT+ people.  Some for example read the Bible very literally, and believe that God condemns all gay relationships.  Others, equally Christian, equally prayerful, take a different theological view.  They believe that God never condemned loving, faithful permanent relationships between gay couples.  Both groups of thinkers love God, believe that the Bible is a foundation of our faith, pray, go to Church, and listen to great leaders on this topic.  It is not a question of one group being deliberately sinful, or wilfully ignoring God. It is not a question of LGBT people leading anyone astray into sin, wilfully.

The Church of England published a paper for its 'Parliament', General Synod.  "Marriage and Same Sex Relationships in the Shared Conversations - A Report from the House of Bishops".  It's quite long.  It's on their website.  You can Google it [Other search engines are available].

We know that loving gay couples do a fantastic job for God and society.  I am blessed with knowing so many wonderful couples.  Honest, caring, dedicated, loving Christians and people of all faiths and none.  Each serving society in the same ways as other couples.  For a time, we were told this was a terrible 'gay agenda', working to destroy other marriage and society.  Some in the LGBT community responded with humour, such as this placard.  Others, with astonishment or despair.  

The CofE has been telling LGBT people that there would be a few years of sharing our stories.  Hotels were booked.  People who are anti-LGBT and people who are LGBT were invited, along with others.  For a couple of days, each person shared their stories.  Things will get better, they were told.  'This is all good.  This a shared journey. We're learning about one another'. Paraphrased. Lots of hope, lots of promise.  LGBT people encouraged to share deeply personal detail.  Detail that could be used against them by anyone unscrupulous, arguably.

Autistic people weren't invited to those.  We weren't deemed suitable.  That's curious.  I'm always interested in the places we're left out of.

The paper?  Nothing changed.    It had still banned its Clergy (Priests, Vicars etc) from marrying someone of the same sex as them.  If they do, they could lose their jobs and homes.  That won't change.  It had ensured that Clergy couldn't marry gay/lesbian couples in church.  That won't change.   It had ensured that Clergy could bless toilets, goldfish and nuclear weapons (no, really), but not gay marriages.  That won't change. Anything important hasn't changed.  Not a prayer, not a service, nothing.

In the report, it says the church should (for example) 'affirm what is good about friendships' instead.  

OK, straight people.  If someone wandered up to you, when you were deeply in love with your marvellous now-husband or wife, and said, "Hey, you could just be friends! God would like you to just be friends and not marry!  If you marry, you are trying to destroy everyone else's marriage", what expression would be on your face right then?  Did you marry in order to destroy society and have an evil agenda?  No?  Quite.  You probably married for the same reason as most other people - because you were deeply in love, wanted to honour society, family, friends, wanted to be part of that covenant of love before God, so you can bring up a family, etc. So do gay people.  They marry for those exact same reasons.   Even if the blessing of marriage seems like a distant prospect, the LGBT community were hoping for something.  Some sign that they had been listened to.  Some sign that deeply controversial language like 'same sex attracted' was inappropriate, given the lack of even a mention of bisexual or trans individuals.

The document mentions that faithful loving gay relationships are often a wonderful thing.
And then, on page 18, the reality....that our documents say that if Clergy marry someone of the same sex as themselves, they are being a 'bad example to the flock of Christ'.  

Well,  autistic LGBT+ Christians never got a say in any of this.
This precious group just get stuff imposed.  Voices unheard. Stories unexplored.
I don't think that's OK.
I think autistic LGBT+ Christians deserved to be heard.  Deserved to be considered.
Deserve to be included.

I am sorry that my lesbian and gay clergy-friends have had this experience with the church. I am sorry that you are seen as a 'bad example'.

I see you as a joy.  As bringing to society God's love, faithfulness, caring, sharing, honouring.  As disciples, as leaders.  I see the same in non-LGBT clergy-friends also.

I continue to pray for a world where people stop hating. Stop fearing.  Stop excluding. Stop making us stories about motives, in order to keep people fearful of us.

Autistic people have already lived in a world full of hate and fear, exclusion and ostracism.

The very last thing this group needs is more.  
The very last thing that this most vulnerable of autistic LGBT Christians needs is more.

I have stood over the grave of too many dead autistic people, who had ended their lives because they simply couldn't go on.

Not in my name.  Have mercy.

#NotTakingNote.

Autism and Disability - Charities pretending to enable us

Nearly everyone loves a story that makes them feel good, yes?  The pictures of a noble carer, selflessly devoting their life to caring for 'people like that'. 

I'm a carer.  And I'm disabled.  I've been a carer since age 10.  It's never, ever been about me needing to be honoured or rewarded for that,.  Caring isn't about me 'doing things' to someone else.  It's a relationship of love and respect, in which both people learn from one another.  It's really hard work, for sure.  With little support, little funding, little training or information.  But it's a partnership, always, between me and the other person.

Any idea how it feels to be thought of, or pictured, as just an object of care by some superhero?  Not good, my friends.  Not good at all.  It is disabling, disempowering, humiliating.  Trust me, even the most uncommunicative person knows when they are being treated with disrespect.

When I'm looking for a disability charity to support, with training, with skills, or with finances, I look beyond the 'feelgood' stuff.  The glitz, glamour, awards, presentations.

I ask three questions.

1) Who is leading this group?  Can I see leaders who are disabled, rather than token people put in front of a camera?  Or is it a group of people 'doing good to those poor disabled people'?  Beware of groups of Trustees with no biography information, no clue why they are in this role.  I like groups to be open and honest about their leadership and motives, with clear ways to get in contact with senior people.  And senior people who respond, politely, openly and honestly, to questions from disabled individuals.  I'm always fascinated by the ones who claim to want to change our lives, but won't speak to us.  Why would that be, eh?

2) Who is speaking for this group?  In the media article, is the article about the disabled person and using their own words, pictures, actions, etc?  Or it is about the heroism of someone who cares for that person?  Whose story is it really?  Does the disabled person just get to be a prop, so we learn about the heroic actions of someone else? Or a prop in the story of the carer?  That's nothing to do with respecting disabled people.  Watch out for narcissistic non-disabled leaders who want to be the story, and want everyone to watch them being marvellous.  That's not what it is about.  Watch out for their token disabled person who is allowed into a space, in order to sit there and smile, or read out the leader's choice of words.   That's not leadership or power, and it's not respect.

3) Is the message about enabling the individual to have their own voice, their own way of communicating?  Do the disabled people decide for themselves what they would like in their future?  Or is it about a group deciding what they will do to disabled people?  Who gets to decide?  Why do they get to decide that?    Who got to decide that 'outcome A' was the outcome required and desired?  Why?  Is that the only option?  Ask.  Really ask.  Whilst you're asking, ask how many disabled people are on the staff.  Ask how many are paid, and at what level.  "We have 4% disabled staff" sounds fantastic, apparently.  Except 16% of the population is disabled, and often people mean, "...well, they're like staff, but we don't pay them. They're more like volunteers really.  Oh, there's Mary, she's paid £5 a week to clean the toilet. And Jas, he's paid £5 to clean the cars.  If we put those down as 'disabled staff' it makes our fundraising report look really good."   That's not what we mean by staff.  Ask what they mean by the term.

Any good group will want to make sure that disabled people have an equal voice, an equal chance at leadership. With proper support and training to enable that to happen, not just landing them in a situation without support, and watching them fail.  "See, the poor dears can't do it".  Been there.  It wasn't pleasant. That's how some groups undermine disabled people.  Not clever. 

A good charity or group will want to ensure that disabled people have the ability to decide their own life choices.  To decide for themselves if they want a 'cure' or not.  To decide for themselves whether their actions are wise, or not (as much as is practical of course). To choose their own right response to an unfair or painful situation, and not have that described as a 'challenging behaviour'.

Who has control of the money?  Who has control of the media?  Who gets to decide who is hired, and who isn't?  Look for how many disabled people in that group have the ability to make those decisions.

"Oh but they're disabled.  They can't do that.  They can't even speak".

This is 2017.  There is technology.  We can all 'speak'.  Some speak in words.  Some speak in music, in arts, in movement, in emotion.  We all speak, in our different ways.

We need groups who listen.

Ask.  Explore.  You'll see a lot of things you didn't want to see.  But there's some good ones out there.  Find them, and enable them to thrive.