Nobody’s Puppet

Nobody’s Puppet

I heard about the play, All in a Row, the other day. Specifically, I read what the writer had to say about deciding that the character of an autistic boy with “challenging behaviour” could only be portrayed by a puppet.

I know so many autistic people who have dedicated many years to overcoming society’s prejudices, fighting against the dehumanisation and othering of autistic children and adults.

And then we saw this. Among a cast of real humans, played by human actors, the single autistic is indelibly marked as an outsider. Perhaps he can, like Pinocchio, dream of one day becoming a real boy, but for now he’s cast out of humanity.

It’s hard to express just how painful it is as an autistic person to see someone who is essentially like you–the character with whom you have the most in common–portrayed this way. To be dehumanised, an empty, soulless shell incapable of any thought, feeling or expression, whose every action is in response another’s command.

This is the very embodiment of the prejudice and, yes, even hate that we face in our autistic lives. We live the reality of being labelled emotionless, incompetent, unfeeling, thoughtless. The agonising wounds of our experiences are opened afresh by this careless action, by seeing this puppet represent every insult levelled at us by our bullies and abusers.

And that is why using a puppet to portray an autistic person among a cast of human actors is unacceptable.

An empty boy with empty head,
My only life is what you bring
In gift each day, my will is yours.
I go where you direct my string.

What do you see inside this shell,
Behind this vacant glassy stare?
Could anybody care enough
To ever see the person there?

I didn't ask to be your puppet
To play this part that you defined.
Am I lost, forever other,
Denied my place with human kind?
It’s Hard to be Different

It’s Hard to be Different

At school I would watch as the other kids played
Left out on the edges and that's where I stayed
Forever the outcast, forever afraid
It's hard to be different, take it from me
It's hard to be different, take it from me
The skills I was taught served me poorly in life
Like holding my tongue, the obedient wife
But never a word about facing a knife
Learning compliance was no good to me
Learning compliance was no good to me
I've taken the beatings, got bruised blue and black
Scarred deep in my mind after verbal attack
So well did I learn that you never fight back
Obeying their rules didn't go well for me
Obeying their rules didn't go well for me
The ones who oppress us stand guard at the gates
I knelt and I begged just for scraps from their plates
The loss of my dignity painfully grates
The autism industry don't speak for me
The autism industry don't speak for me
I've heard about heroes, I've listened to songs
Of fighting injustice and righting the wrongs
But my heart it won't heal until it belongs
Autistic culture is something to see
Autistic culture is somewhere to be
If you want to help your people then stand next to me
If you want to help our people then stand up with me

(To the tune of Working Class Hero)

When Care is Really Control

When Care is Really Control

As an autistic woman myself, I know I’m not alone in seeking the security of a stable, dependable home life. I sucked badly at taking care of myself when I first lived away from home at university: I was intimidated by communal cooking and laundry areas.

The pattern repeated when I moved away for work: my awful, almost-non-existent organisational skills left me struggling with all manner of domestic tasks from my finances to making sure I had food and clean clothes. I was pretty much living off take-aways when I met someone.

In my first committed relationship we set up home together, had a daughter and got married so quickly that it’s a bit of a blur in my memories. With hindsight, we weren’t well-matched and the marriage didn’t last. I think we both had breakdowns after it imploded and we went our separate ways.

Within only a few months I found myself in another relationship. You might be thinking “rebound”. Looking back, I am thinking “rebound”. But at the time I blithely dismissed concerns that I was rushing headlong into things (again) and declared that it was true love.

The marriage (for that’s what we did in our second year together) appeared to start well. Despite my partner’s occasional displays of drunken aggression, sometimes in public, we got along pretty well. Or so I thought, but in reality I was adapting to minimise the friction.

Over time I let my spouse manage all the household finances, cook the meals, choose how the home was decorated. In return I got the illusion of security and stability. I say illusion because there was always the implicit threat of being thrown out, always some reason why I couldn’t become a joint tenant.

My ties to family and friends weakened as I gradually lost contact, being made to feel guilty for spending any time with them rather than my spouse. When we went out I’d often be left sat on my own while they went around socialising, while if I ever did the same I got accused of spending no time with them.

I became well-versed in my failings due to having them pointed out regularly: how I couldn’t cope on my own, and how I’d have ended up in an awful mess if it hadn’t been for my spouse. I actually felt grateful for it, for their control over my life, making order out of the chaos.

On a number of occasions they got drunkenly argumentative and locked me out, only to be extra nice the next day after allowing me back in. A couple of times I tried to leave, spent a day or two sofa-surfing at mutual friends’ places before giving in to the pleas for me to return, promising it would be different.

A couple of times I tried to kill myself, washing down handfuls of pills with whisky or other alcohol, but I always ended up vomiting them out and surviving.

By the end I was spending a lot of time in a little box room on my own. When I felt especially threatened I would wedge a chair under the door handle to prevent my spouse from getting in, and I’d cower in there while they hammered on the door and shouted threats.

All this and I still couldn’t leave. I no longer believed I was being cared for, but having any home seemed preferable to the unknown chaos of life on my own. There were just so many things I would have to do to get away that trying to think about it overwhelmed me.

I was in mental health crisis, on medication, unable to work and suffering frequent panic attacks. My counsellor helped by guiding me through the process of organising my thoughts into an exit plan. My daughter helped me find a place to live, and assisted with setting up home there.

Things aren’t perfect, even more than a year and a half later. The emotional abuse over those years has seriously damaged my mental health and I have complex PTSD, frequent suicidal thoughts, and a bunch of new scars from self-harm.

But I also have support, and perhaps more importantly I have belief in myself. I know now that I can survive life on my own. That’s not to say I don’t struggle, and keeping on top of bills and household chores will always be difficult.

It’s tempting to let others manage aspects of your life in the belief that they will care for you. But all too often this dependency forms the basis of control, of abuse, and that is far from healthy. It took me a long time to recognise the signs, and I let my judgement be swayed by the person who was abusing me because they claimed to be looking after me and had undermined my confidence in myself: I believed their words over the evidence of my own eyes.

We autistic people are particularly at risk from those who would take advantage of us, abuse the trust we place in them and end up harming us. We become dependent on carers. Look out for warning signs like these:

  • If you find yourself making excuses for your partner or carer when others question the way they treat you.
  • If they regularly act aggressively towards you, shout at you, or otherwise make you feel scared of them, make you afraid to challenge them.
  • If they often tell you what you can or can’t do.
  • If they alternate between being cruel or nasty towards you, and apologising and being extra nice for a while.
  • If you frequently get criticised, teased or called hurtful names: if they keep finding fault with things you do or say.
  • If they make you feel guilty for spending time with other people, or make you feel bad if you interact with others online: if they isolate you from people you used to have around you.
  • If you aren’t allowed access to your own money, or don’t have a say in things you buy or do.
Bullied

Bullied

Day 26 of 30 Days of Poetry

Why do I go back
Where I'm not wanted?
Why do I speak up
When my words are wrong?

I'm not like you
I'm different
I'm strange
I'm a weirdo
I'm a freak
I'm broken
I'm unwanted
I'm a misfit
I'm unlovable
I'm alone
I deserve this

I'm sorry for existing
I'm sorry I'm not dead
I'm sorry the pills didn't work
Or the knife
I'm sorry I was scared
I'm sorry I couldn't jump
I'm sorry you have to see me
I'm sorry (please stop)
I'm sorry I hurt
I'm sorry I can't stop crying
I'm sorry for apologising

I'm sorry I disturbed your nice life

I'll be gone soon
I'll go quietly
You won't even know
I was here

Paying the Price

Paying the Price

Day 7 of 30 Days of Poetry

A pair of wide eyes stare straight back at you
Autistic lives mean pounds and pence,
Abused for profit, hurt en masse:
Trained compliance, no defence
Against their need to make us "pass".

If we're to be good girls and boys
We learn to do as we are told
Or else they'll take away our toys
And leave us lonely in the cold.

Behaviour is our battleground
With eye contact and quiet hands,
Sit still, don't rock, nor make a sound,
Just do whatever he commands.

Obedience might suit you well
But know it's gained by force and threat
Resist the ABA hard sell:
A human child is not a pet.

Instead of mourning something lost
Accept your whole autistic kid
Or you might live to count the cost
While nailing down their coffin lid.

The trauma of coercive "cures"
To make us look like all the rest,
A ticking time-bomb that endures:
Too many of us can attest.

The damage lingers deep inside
Until in later life we find
The cracks it caused have opened wide
And left us with a broken mind.