Sunday, 3 September 2017

Pay for Autistic Expertise: Equality, Respect.


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.

Autism Conferences:

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).
That's £40,000.  
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.
But....

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.  
Fairly.
Because you don't want a future where your child is worth nothing.

Thank you for listening.