Over one hundred years ago in a post revolution Marxist Russia, the term Political Correctness was born. In the past 100+ years it has experienced many different incarnations (a bit like Madonna).
Often times with serious, important issues at its core needing to be skillfully discussed and crafted perfectly, other times it has become a parody of itself and has been hailed as utterly ridiculous (again quite a lot like Madonna!)
Unfortunately in the modern world, after too many years of re-invention and over the top effort to be seen as saving the world, it has done nothing of note in recent years, being consigned to the vault of comedians who throw it into their routine infrequently when they run out of good material (again Political Correctness, not Queen Madge)
It is a real shame that is the case and I worry it will take the rotation of a generation or two before Political Correctness can again be treated with the respect and attention it needs. In truth its intentions and goal are very positive, in fact vital in achieving a fair society.
Unfortunately, as with much in life, intention is trumped by impact, the small but often terrifying group of self-appointed ‘PC Police’ taking a militant approach to ‘being right’ ahead of doing ‘what is right’ causes the general population to lose interest, shaking their head and internally wondering were they foolish to listen at all.
This week whilst responding to a post in a closed Facebook group for mothers of Autistic children, I encountered a distressed Mum experiencing violent behaviour at home from her Autistic child.
These experiences are sadly common for a lot of Autistic people. as they try desperately to navigate a world that does not suit their brain. The anxiety experienced as a result of this for many Autistic people, leaves them so desperately overwhelmed that they can go into fight or flight mode and this is the only way they can communicate their distress.
This is no-one’s fault, no one is a bad person, it is simply a fact of life for some people. It is my firm opinion that recognising and discussing this sad (not bad) fact of life, will make the neurotypical world sit up and take notice of what is going on for Autistic people.
Not in a nasty, gratuitous tabloid press kind of way. This is not Love Island, or I’m a Celebrity Get me out of Here. This is hardcore real-life trauma for some people and if the neurotypical world understand and empathise with how bloody awful it can get, then maybe we could try harder to change things for the better.
I would like to caveat this by saying talking about it openly, not treating it as a taboo subject, but as genuine life challenge is one thing. Filming your child when you should be helping them is never ok in my opinion. Gratuitous videos of Autistic people melting down posted all over social media or You-Tube is not ok! This situation is not a time for like harvesting.
As this communication through violent/challenging behaviour has been part of my Autistic son’s life for many years, I offered to support to the Mum in the Facebook group on the family’s challenges, as we had experienced out own.
I was immediately jumped on in the virtual forum, by an (in my opinion) over-zealous parent who questioned why I dared use the word “challenges” and indicated basically that I was being a bad parent and damaging my child by the use of the word.
I was then issued with a statement from the page’s Admin Team, telling me that appropriate language needed to be used and that meltdowns were in fact traumatic to the Autistic person, not traumatic to the rest of the family and it was not my right to indicate that they are. The Admin Team clearly have very different Autistic experiences to mine and that of many other families!
Needless to say, I left the group as I am trying to reduce stress in my life. However, at the age of 44, I am still working on my ability to leave situations gracefully, which is kind of difficult as I still can’t eat beans on toast without covering my top in the sauce – grace is not my strong point!
Needless to say, I wrote a response the length of a thesis as to why I felt the use of the term was acceptable, was valid and was most certainly not abusive to Autistic people.
I then exited as I did not want this to become a quarrel, as I mentioned in my last blog post, different viewpoints have suddenly become a battle ground. It is my opinion that different viewpoints are not and should not be treated as opposing arguments. They are simply as the name suggests, different points of view based on different experiences and different personal emotions and feelings.
I started writing early last year to try and help me explore and understand my feelings. In October last year I went on a writing course, which encouraged us to use writing to remember situations and dig deep write about the full sensory experience we felt.
I wrote the piece below on the course as a new way to explore my feelings. This is something that I find tremendously therapeutic and healthy for my own emotional well-being. Vital to maintaining my mental health equilibrium (that may sound a bit OTT but I like the word equilibrium and don’t get the chance to use it often).
When I wrote the piece, I didn’t know if I would ever share it publicly. But I have decided that now is the time I do want to share it. I share it not to be a “Martyr Mum” an insult sometimes leveled at parents who share their feelings. Sometimes leveled fairly, but often not.
I share it for the same reason I wrote it; to recognise that during a period of violent/challenging behaviour or of severe meltdowns that an Autistic person may experience, the trauma is felt by everyone, pain, sadness, anxiety. You cannot suppress it and nor should you try if you want to remain healthy.
The depth and pain of these emotions is personal to everyone. Who it is worst for, should not be measured. This is not a competition and trust me, there is no glory nor a medal for having a terrible time – everyone loses.
The End of Summer (2018)
The end of the summer was approaching, the air coarsened with that familiar chill, air that carried the rumble of tractors gathering up grass for winter hay. It was the distant hum of a tractor that roused me. It was that point in the day when everything happens in the distance. Muffled scents and sounds from breakfast, intermittent light between blinking eyes, preparing but not quite yet ready to open. My brain still in the space where it could have been a dream. But it wasn’t a dream.
A ’vivid lavender’ darkness descended. I knew the shade so well, having searched haberdasheries the length and breadth of the county, to find the exact match to accent the flowers on my new bedcover. The freshly laundered pillowcase now engulfing my senses. The aroma of buttery toast distantly teasing my appetite, so violently replaced with the sickening taste of ‘oriental lily’ fabric softner skimming my lips, as the pillow pressed against my face. His weight was on my chest.
I was frozen. Frozen in that space in my bed, frozen in that moment in time, frozen in the confusion and vague panic flooding my brain. It stayed dark for too long for this to be a game or a prank to waken me, chastising me for sleeping late. I knew instinctively that he wasn’t serious, he wasn’t pressing hard enough. The daylight flooded my face long enough for me to make a sound, a cry, a call. Not just to call for help, but a cry out in pain.
Emotional pain not physical, as the realisation descended into my mind as vivid as the lavender darkness that descended once again. Time passed quicker this time between the darkness and light. With the light came the release of the physical weight on my chest, the soft skin of his foot brushed my ear, juxtaposed by the heavy thud of him being pulled to the ground.
His physical weight on my chest was gone, but it was replaced by a new, invisible weight that has never left.
He was giving me a message. A message he could not find the words to tell me. But his actions and the pain in his beautiful brown eyes translated his anguish, telling me; Mummy, I don’t want to go to school. Mummy I’m scared.
I have chosen to share this piece now in an effort to prevent the type of Political Correctness that is beginning to invade the Autistic Community, from consuming it and causing damage to the common goal of acceptance and equal rights.
The negativity that so many Autistic people have experienced in their lives is without question. Much of that the anguish they have experienced has also been felt by their families and loved ones too; not against them, but for and with them.
Not because the person is Autistic, that is a as much a part of the person as they colour of their eyes. But so much of what has made up the Autistic experience so far has been traumatic, littered with challenges and in all honesty it will probably continue to be so for a long time to come. Sadly this is the real world, not a perfect one.
Often that is down to the huge misunderstanding of the Autistic brain, that has been seen as limited or defective when it simply isn’t.
The Autistic experience is not an easy one, often made so much harder by the lack of services and supports that can consume the lives of parents and carers to a point, where frustration begins to be misdirected, attached to the Autistic person, instead of to the society that has created it. As parents, siblings, carers it is vital that we fight against that particular feeling, but we have to be allowed to explore it to be able to do that.
It is also vital that we do allow our own personal trauma to be expressed, to validate it with others in similar situations. Recognising that often, things that are associated with being Autistic are indeed immensely challenging for both the Autistic person and the people that love them.
To not do so is unhealthy and will create a melting pot of resentment, bitterness and distress that will eventually boil over and wash away the positive steps forward that are being made.
It is equally vital that, Autistic people know that this experience of trauma is not their fault, they are not blamed, not hated, not unloved. But that this is a part of their own and their family’s life experiences as a whole. That need to be worked through together.
Discussing the challenges removes the damaging taboo, the perceived ‘shame’ that should not exist, rather promoting an understanding, driving forward positive changes and healing for everyone concerned. Supporting others through challenging times, to overcome those challenges.
To finish as I started with Political Correctness, we now have an opportunity to right some wrongs that have occurred for the Actually Autistic Community.
To achieve this, we ALL must commit to do that reasonably, sensibly, collaboratively. Move forward in a way where everybody wins, that everyone achieves equality – which is the actual goal of being PC in the first place! Then maybe the comedians won’t be laughing about it, they’ll be applauding because; we’re in this together.