There's even a hierarchy in disability

“There’s even a hierarchy in disability”.

“Dear Mr President, Internal Revenue regulations will turn us all into a nation of book-keepers. The life of every citizen is becoming a business. This, it seems to me, is one of the worst interpretations of the meaning of human life history has ever seen. Man’s life is not a business.” Saul Bellow, Herzog. 1964.

The ‘business of man’s life’ appears to have been swallowing us all for at least the last sixty-one years. In the continuing search for financial backing to support the productions of Shakespeare’s plays that I perform with autistic people, I increasingly find myself having to justify the economic value of each and every one of the unique human souls I work with; human souls who may never ever earn money nor spend money, never invest money nor indeed divest money, never save money nor squander money and worst of all worsts, are unlikely ever to entertain the prospect of entering the all hallowed ‘workplace’. Thereby they unknowingly render themselves unnecessary and dismissible in the eyes of many; an invisible people whose loving eyes see more than pounds and pennies and rubles and dollars, whose sweet voices sing to the incandescent music of the spheres, audible if you could only stop fretting about money and listen.

I apply for funding to support my performances of Shakespeare with autistic people by applying myself to apply to foundations through online applications, that ask no end of numerical questions to which my answers just don’t look good. Because numerical questions always beg for answers that are only impressive when huge in volume and size. It just doesn’t look good on the online application, that I need to apply myself to, in order to apply to the foundation, to write the number 12 as the answer to their question “how many beneficiaries come to one of your activities?”.

Inside the image that makes that number, inside the 1 followed by the 2, inside the letters that make up b e n e f i c i a r y and all the letters that make up a c t i v i t y exists a community of a few hundred autistic people who with their brothers and sisters and fathers and mothers and friends and aunties and grandpas and grandmas have over the last ten years shared with a company of exquisite young actors undreamed-of sadnesses and inconceivable griefs, forging unimaginable bonds of trust and experience that have held us together and shown us truth.

But what if none of this trust and experience matters in my online application to the foundation as I read in the small print that in order to be awarded some of their funds I need to prove that taking part in this activity will result in the beneficiary progressing in “a career in the arts, thereby adding to and creating a cultural workforce”. But the people I perform with have very little chance of joining any sort of workforce, cultural or otherwise. Will it make any difference to the outcome of my application that I’m quoting the mother of Luke, an autistic fellow who’s performed with us for six years as he’s grown into a man, who says this:

Its hard enough walking down the street with my autistic boy, let alone going into a theatre!

And then she says this

but last night I went to see Luke perform Shakespeare’s Pericles, Prince of Tyre with the Flute Theatre group. How they managed to keep 12 autistic young adults & an audience of family, friends & the wider community engaged is an astounding achievement. I’m so pleased and proud of our boy, who is very profoundly autistic; non verbal and struggles to stay focussed. I’m so pleased that he wasn’t ‘left out’ as is usually the case, as the more able young people with autism, the more accessible ‘face of autism’ are included - yep there’s even a hierarchy in disability... even within accessing disability groups. I’m so pleased I fought hard for Luke’s place at his college, so he gets to be included, celebrated and championed.

Luke doesn’t have to be part of a cultural workforce to be of value, a person’s value sans workforce is immeasurable. His mother fights hard for her sons place at the college, whilst I fight hard to continue performing with her son and hundreds of his people. To fight this fight, I must apply myself with all my might to answer all of the questions in the online application.

But Saul Bellow says this: “Readiness to answer all questions is the infallible sign of stupidity.”

Rendered a fool, I’ve applied myself to the task of finally answering all of the questions in the online application and I’ve also checked and double checked all of the answers to all of these questions and then, after days and weeks and months of work on the application I finally press send, transporting said application off to the foundation with the highest hopes of success. Always with Luke and his friends in my mind. With wings as swift as meditation or the thoughts of love, I receive from the funder a message! It asks me to prepare to hear from them within only four weeks with the likelihood of the total rejection of my application, within which time I do indeed receive, along with firm instruction that there will be no further conversation between us, their complete and utter rejection for my application for them to fund the continuation for me to perform Shakespeare’s plays with our invisible community of autistic people. It’s over. I have been overwhelmingly unsuccessful with my application. But a rejection from an online application to a major foundation will never stop us performing with Luke and his people, we’ll find funding from other means.

Rejections from charitable foundations are completely normal, you win some, you lose some, you pick up, dust off and start over, for many it’s a game. However, the "hierarchy in disability” that Luke’s mother speaks of, is no game for the people who live it every day of their lives and some experience pain, injury and untold sadness. The existence of this hierarchy maintains the invisible community of autistic people whom funders are less likely to support because the ‘results’ of their participation are almost imperceptible. These are people who may never write a play, nor be in a play, however I leave you with the words of Luke's teacher;

Some individuals have required a bespoke approach due to the complexity of their needs. As an example, Flute have provided 10-minute sessions for specific individuals over the course of a week to develop trust and slowly reduce anxiety. Others have had their own hour-long performance; just one autistic individual and a company of eight actors. This will often be a performance of heartbeats, or more subtle sensory games, for those who require a lower demand approach. The company always looks for ways through; no matter what the barriers may be. On one occasion, an individual felt too anxious to move from the mini-bus to the venue, so the company came to him and performed in the street. Nothing is off the table. Flute work in the arena of making the impossible possible. The following week, the student made it into the venue and stayed for an hour interacting and laughing throughout the performance. What an incredible achievement! “ Jo Horsley, St John’s College.

From March 18^th -24^th we are running our annual Arts for Impact Big Give Campaign. Your £10 become £22.50 and goes directly toward our performances with the invisible community of autistic people who we will continue to support for as long as we exist.

Please support us with whatever you can spare.