There is increasing talk about Disabled Leadership in the Arts. There are stirrings, positive ones, potentially amazing even, in the arena of the Arts and Disability. (Even in wider fields, for example Autism Research – just reading the Twitter feed coming from IMSAR2018 indicates that level of Actual Autistic participation has increased and that is a cause for hope for a better future in research and practice.)

Excitement and awareness aside, there are still some brass tacks issues to face and tackle head on. Before we can even make that leap into Disabled Leadership, there needs to be some basic concepts of respectful and ethical interactional treatment of disabled people. How do we establish leadership if the non-disabled world cannot even bring themselves to the level of viewing disabled people as human beings worthy of esteem and regard as equal participants in society?

A fundamental topic is that of payment. Yes. Money. And plain simple respect. Let’s start here.

Every person ought to be paid for work done. It seems such a simple and straight-forward thing to say, and everyone agrees on this principle. Yet, where it comes to disabled people this somehow dissolves into the mist of bloviating (gaseous bubbling gooble-de-gooping) – meandering noisome justifications for unfair practices.

There are some uneasy and disturbing facts here that require highlighting.

Fact: Disabled people need to spend a lot more money just to stay alive. Why? Well, in case you didn’t know already (where have you been, hiding under the rock of deluded ableism?), disability of any sort requires certain supportive measures, some very basic ones pertaining to survival, life or death, and others to help us gain a small measure of function and equity.

Fact: Disabled people are paid less for work done, or usually not paid at all.

Question based on above two facts: How do disabled people manage to survive?

Answer: With a great deal of excruciating struggle – and sometimes not at all. We just die. Inside and out. And no, there are no pyrotechnics surrounding our deaths. Society hardly even notices at all. It’s as if we’ve never existed anyway.

Let’s look at my own experiences as illustrations in real time, the ‘proof’ to the theory, so to speak. And these are merely a very small handful of less dramatic stories in a choppy sea replete with flotsam and jetsam of ableist abuse of disabled persons. (I have been relatively lucky in this respect, so my examples are really mild compared to that of other disabled persons.)

I was once asked by someone running a social enterprise to speak at their autism event. An annual one, with a terribly insulting name. I politely pointed out the fact that the title of the event made us autistics out to be criminals or implied that autism was some nefarious dastardly occurrence that needed vigorous ‘outing’ in order to ‘set right’. First ‘ping’ of antagonism. I pressed that bell of truth. Truth is not pretty, and truth from an actual autistic person to a non-autistic person running an autism event is usually not very well received by the latter. Not happy, the person argued with me, babbling words that my frazzled brain consciously deleted for the sake of my own mental wellbeing. All I can safely remember is that my suggestion was not taken to heart. The offensive title remains. Righto, regarding the speaking engagement, please do tell me what fee or honorarium you are offering? This is a question that fills me with dread, I abhor being put in the position to have to ask at all. It is not only demeaning, but also depleting. Second ‘ping’ of antagonism. A louder one this time. I pressed that bell yet again. No, they never intended to pay me, and then came more worded babbling, most of which I had to forcefully filter from my mentalscape, again for the sake of maintaining some equilibrium. What I do remember is being harangued and scolded, being told that I ought to be grateful for that speaking platform, for the ‘exposure’. I also remember giving (free, no fee required) two pieces of advice to this person: 1. Next time you wish to hold an autism event that you tout as ‘inclusive’, for the sake of some sliver of credibility, do please feature actually autistic voices (not just one autistic person with a PhD among an entire panel of non-autistic persons speaking about autism); and 2. Pay the autistic people for their time and expertise of lived-experience as well as other relevant professional qualifications they may have. This person is clever, because the next year, they did indeed heed part of my advice to them. They included many more autistic persons in the line up of speakers, but nope, they did not pay any of them. Any thinking person who can do fundamental mathematics will be able to make some basic maths out of this, you don’t need to be an experienced events organiser or curator to know that where there is a will to respect the people involved in your event, there will always be a way to pay them their dues, at the very least out of respect if not for profit. “No budget!” was the repeated and stodgy statement. I did ask this person how they paid their own bills, I also asked the person about the structure of their company, and to view the expenditure schedule of the event, but of course there was no reply, merely increasing hostility from them. It became so farcical at one point, that my brain could not filter this one line out and hence it remains embedded in my consciousness: “If you want money, you can go ask my sponsors yourself!” Huh? If I wished to speak to your sponsors myself, why would I even bother to speak at your poorly run event exploitative, why won’t I just organise my own higher quality and truly inclusive one? … Sigh …

(On a quick aside, I tried my best to hold a conversation with this person in private, I did not immediately bring the matter up in my proliferate writing online, not until I was utterly exhausted by the futile protracted interchanges anyway. So, yes, I did try to do things in the nice-nice neurnormative style of social-political ‘correctness’. It did not work. In fact, it gave birth to a lot of gas lighting and huffy stories afterwards. This happens a lot. It is exhausting and futile. It is why I do not like subterfuge and surreptitious murmuring behind vague normative curtains, I prefer to take the truth out into the open wherever I can. It works better for my native autistic functional style, and bears far better results for the cause. Shove things under the hush-hush table and it benefits only yourself, that is, perhaps, only if you’re very lucky. Bring everything out into the open, and anyone wanting to learn can benefit from an illustrated situational lesson, plus there’s advocacy. Of course, if you have all the generous array of ‘spoons’ and gumption for it, without having your very Being wilted and fragmented in the process, you can juggle both the hush-hush private negotiation and the open platform lesson in advocacy simultaneously. I seldom have that luxury, most disabled people do not have that option anyway (just not enough mental and physical verve for the exercise), so the most effective action is to take things back into our own platform, to speak from our own podium, a space that is comfortable for us.)

Another true story: A few weeks after the above incident, I was approached by some author to contribute a chapter in a book they were going to publish about autistic people and their personal stories. Sounds great, so ‘inclusive’, yes? Once more, I pressed that bell of truth. I asked for contractual terms and conditions, what about payment or royalties etc? Again, I was met with defensiveness and that stock phrase “No Budget!” reply. The author declared they did not make ‘much money’ out of this venture. OK, what about royalty shares then? Um, also no. This person was much more congenial and polite than the first event organiser – maybe being an author is a more genteel profession than organising events? I don’t know. Anyhow, I politely declined, employing the neurotypical style excuse of having insufficient time in my busy schedule. It was the truth, I just wrapped it in language that I knew the neuronormative would accept better, I really did not have time to engage in costly (at my expense) charity towards non-disabled persons benefiting in whatever way from their little ‘disability themed’ projects.

Most recently, I was once again approached by an author to write a chapter in yet another book containing anecdotes from autistic contributors. Seems to be a ‘thing’ lately? This book, like the previous one, already has a publisher behind it. This time, unlike the other, the publisher is a well known international publication specialising in disability and especially focused on autism matters. I pressed the bell of truth once more. I asked again about a contract – either outright payment or part of the royalties. The ‘author’ (actually more like an editor, strictly speaking, since they are merely gathering stories authored by others) subsequently emailed me to say that nobody will be paid anything for their contributions to the collection of genuine stories of autistic life by autistic persons. Again, a string of excuses about their own impoverished personal circumstances and how they have no budget / no money etc.** (See update note below.)

Here’s the bottom line: It is unethical to expect people to donate time, effort, expertise to your own pet projects without offering even the smallest gesture of respectful acknowledgement. Monetary payment is the preferred gesture, but there are other ways in which to show decency and respect. In the case of publications, a share of potential royalties in a legal contract would be good. At the end of the day, even if the publication is so terrible that it does not sell and therefore there are no royalties to be shared, the fact that there was a thought behind the contract makes a huge difference, it is a mark not only of professionalism, but of genuine respect. Yes, “respect”: I’ve used that word too many times in one essay. Perhaps because it is so monumentally important, or perhaps because there is so little of it to be had.

It always begins in the same way, the person starts the conversation in a sickly sweet patronising tonality, but things soon either turn ugly when I refuse to be condescended to, or they fizzle away into the murky miry depths, never to be heard from again, though I can spot them from a distance doing the same to other disabled victims.

I am nonplussed. Do people working in the disability sector or just in wider society expect that disabled persons ought to feel grateful when asked to contribute freebies to their pet projects, for example, ‘Autism’ projects initiated by non-autistics just for the ‘exposure’? Aren’t we ‘exposed’ enough? Exposed without protection, exposed without respect, exposed and exploited. And then gas lighted, silenced or criticised when we dare to try to protest.

Of course, there is much much more to Disabled Leadership than just money. Leaders do not insist on being paid for every little thing they do. I have done, and still happily do what I call ‘freebies’ very often. Sometimes, I offer without being asked. But that ought to be my active choice, it should not be an expectation on the part of the person contacting me to do a piece of work. If it is a project looking for unpaid volunteers who share your passion for the cause, then make sure your introductory letter / email / pitch clearly states this. Clarity is important – autistic minds absolutely need clearly defined communication, because foggy nebulosity causes our brains to become scrambled in a very bad way; and doesn’t every person benefit from transparency and precise coherence too?

Now for a change in harmonics. There is good news yet.

Thankfully, I have worked internationally – in the UK, Hong Kong, Australia – with some of the very best non-autistic allies in small and large, intimate and amazingly wide reaching projects, paid or voluntary, and I have been treated with equity and respect in every way by these collaborators, curators, organisers and directors. So, yes, not all people working in the “Autism” or “Disability” arena are ignorant ableist and/or exploitative. (I move freely between “disabled” and “autistic” because my field of practice focuses mainly on autism and neurodiversity, but I think the reader is able to draw the connections with disability in general.)

It’s not all dire. There is a lot of hope glimmering in the horizon, in fact, as I meet more and more allies in the field, as increasing numbers of people step forth to identify themselves as potential allies, willing to learn new paradigms from the actually disabled, the actually neurodivergent, the actually autistic layman advisors and professionals. Yes, if you follow my activities, you’d already know that I have recently been giving a number of lectures and workshops in institutes of higher learning – it is very encouraging to know that current and future researchers and practitioners are interested in becoming allies!

You see, Disabled Leadership is not always about who is the Big Boss of the show, though it would be great to see more actually disabled people as Big Bosses in the disability field. It is more about the paradigm shift that is needed, the cultural milieu, that practitioners at all levels understand and embrace this tenet: the spiritual, intellectual and physical voices of the actually disabled should take the lead.

But change needs to be much more robust and forward than what is happening now. Disabled people and our allies need to situate the topic on a new platform – not anymore the tired, worn and ineffective non-disabled platform that isn’t working anyway, but the actually disabled one, designed and drive by disabled people – in order to be cogent and dynamic in our progressive surge ahead. We need a cultural change. Ask us, we are here. We can show you how we can do this together.

 

**Update: I have made known my sentiments to the second author and they have responded positively. I have declined to contribute to this work, but I am glad that the author promises to act on my advice to offer the contributors something that reflects the respect and valuing of their contributions. An encouraging outcome indeed.

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If your organisation / company / institution would like to hear more on this topic / would like to learn more in a participatory interactive workshop about how to respectfully include actually disabled people and / or how to think and act upon Disabled Leadership, do please send me a message.