By Heather L.E. McKay
The things that people typically label as “out of our control” are the things that continue to hurt us. If we try to ‘let go’ of those things – our lives become truly disabling.
They say that outside of our control- are things like our reputation, others opinions, actions, reactions and feelings towards us, but also things like the past. Past things like previous conversations and things that happened to us. But this is one of the most privileged things I’ve ever heard. Only someone who is not daily discriminated against, or harmed by, or traumatised by our society and environment can say that we should ‘ignore’ it or be above it, ‘let it go’ or not be anxious about it – or to ‘stop trying to control things that you can’t control’.
Trauma is something that lives in us. Yes, we can try to deal with some of it, and cope. But many of us are retraumatised every time we step outside the front door. It’s a fact of being a minority, of being disabled, and of living in a world not built for us. And that’s what is gaslighting and ableist about the circle of control or the CIA (Control, Influence, Acceptance).
Telling us to stop trying to control things that may be slightly out of our control is similar to saying: “stop being disabled”. Because the things that typical people believe aren’t worth their time or aren’t worth bothering about or caring about – are the things that disable as.
Imagine an autistic person going to a social event. Getting to the event is a huge ordeal for them. They script everything that might be said, they prepare their masks and try to keep them in place, they pick a route and transport method that will get them to the venue with minimal lost spoons and ability/capacity loss. But before they even leave the house, they must prepare their body for a sensory onslaught, they must choose clothes carefully to be able to attend the event in ‘socially acceptable attire’ but also be comfortable enough to not have a meltdown because the shape, texture, colour, size, material will set off every sensory issue they have, or trigger their co-occurring disabilities.
They need to prepare for every possibility.
When I go places, I have to assess whether it will set off my fibromyalgia, my Raynaud’s, my kids asthma, theirs and my other disabilities- and there’s too many to count, list or number. I have to take a bag with all our needs inside. If I forget anything – it’ll make one of us disabled. If we get to the event and they don’t have our safe foods or accessible toilets – we are screwed. But typical’s would say – don’t worry about it – it’s something you can’t control. But what they don’t understand is – if I can’t prepare and control to an extent – we can’t go at all!!!
I have to research the venue; do they have certain facilities, do they have pictures that I can use for social stories for my kids or to prepare for an eventuality that would otherwise trigger one of us, do they have parking or close transport, is it indoor or outdoor, do they have food – what food, etc etc etc. Is there plenty of seating or do I need to take a wheelchair. Is it outside, do I need my kids Irlen’s glasses, and allergy meds. Will I have access to my car, or do we have to take public transport.
If we take public transport – it’s another form of tremendous spoon loss. It’s loud, busy, smelly, traumatic, we can’t control it, we may not be able to sit (which will set off co-occurring disabilities). I wouldn’t have access to a car boot full of tools in case things go wrong- which means I have to carry more – which puts more stress and literal baggage on me. Which physically exhausts me by the end of the day – robbing me of yet more spoons.
I must mask while taking care of two disabled children who are trying hard to not mask – as it costs them too many spoons as well. By the time we’ve reached our destination, our spoons (energy levels) are already half depleted – and we are losing our ability to ‘control’ our inner circles by every passing second. By the time we leave the venue – we are all in meltdown and trying very hard to keep it together until we reach relative safety (like inside my car) or if we took public transportation – all the way home.
If we didn’t try to control these things that typical people take for granted and don’t see as something that ‘needs’ consideration or control – we would never be able to leave the house. Because without these controls in place – we become completely disabled.
When we look at the circle of control we see three circles. Inner = what we can “control”. Middle = what we can try to “influence”. Outer= what we have no control over – what we should “accept” – and therefore should apparently drop, ignore or not think about.
The inner circle is what TYPICAL people control:
· Their own thoughts, opinions, motivations, desires, aversions, reactions, emotions and actions.
But for the ND person – we actually (often and frequently) have no control over them.
· If we are ADHD, we struggle enormously to control motivations and ability to do things when we want to do them. Eg: executive functioning issues, focus, dopamine/ serotonin levels, understimulated or overstimulated and some other issues that affect this ability monumentally from minute to minute/ hour to hour/ day to day.
· For people with ARFID – we can’t control our aversions and what we avoid – it’s literally in the title “AVOIDANT RESTRICTIVE food intake disorder”.
· For people with trauma or burnout or cPTSD, we can’t control our reactions, actions, sometimes our thoughts, emotions and outcomes. We will go into a meltdown or fight/flight/flex/fawn/flop etc when we are triggered – we lose the ability to control our own bodies.
· For people with motor disinhibition, epilepsy, apraxia, dyspraxia, dysgraphia, dyslexia, diabetes, EDS, tremors, Tourette’s, and many other physical disabilities – the proof is in the disability – we have disabilities that literally stop us from being able to control our own bodies.
· The same for people with things like POTS, Fibromyalgia, Parkinsons, MS etc – we also can’t control when pain or fatigue occurs or when our bodies just give in.
We can’t control it! These things are actually less in our control than the outer circle. For disabled people – the circle is sometimes opposite – or reversed.
The inner circle becomes the things we can’t control – and the outer are the things we can control. We HAVE to try to control those outer things – because they are the things that hurt us and set off/trigger those co-occurring disabilities.
When I control when I go outside – because of changing weather conditions; I limit my Raynaud’s, I control my fibro, I reduce my hay fever, I prevent my ear infections and ear pain. I GAIN ABILITY. I gain spoons, I gain energy – I become able – and then I move backwards to ‘control’ the things I can’t control (my inner circle) – my disabilities, in a way that helps and supports my individualism and capacity.
When people talk about the Circle of Control – they are saying that you should concentrate on the inner circle - the things that you can control and improve.
But when you are disabled - and those things within that inner circle have been worked on to the extent that there’s nothing more you can do and work on – your only choice is to work on the outward things and work inwards or backwards.
Many of us have been working on our co-occurring issues for years, or even decades – to no avail. Because we can’t change what is, we can now only prevent the worst of it by controlling everything around us to our best ability.
Typical people with privilege and no experience of disability or of discrimination will likely not understand this concept, or misinterpret what I’m saying, or try to twist it to blame us. They will often continue to say – but you need to build resilience to those things, and you need to work on you – or even say “but you CAN control those things”. This is what’s called gaslighting. It’s what’s called extreme privilege and non-affirming care or support.
When you have affirming care and support, those around you will help you to find ways to control those outer things, so you can cope and survive. They will not work on changing you and trying to teach you to control things that can harm you or cause you pain – they will look at your boundaries and things that cause your inner circle pain. This is the social model of disability. The medical model of disability is very like the Circle of Control – it puts the blame on the individual (the inner circle). Where the social model puts the blame on the outer circle.
In an office space – the things that you can’t control are often:
· where you sit, who you sit with, the smells and the temperature etc.
This is what typical people call the outer circle. What they’d say to you in this scenario – is “to get used to it”. They might recommend exposure therapy to acclimatise yourself to it and ‘put up with it’. But for a disabled person – we’ll never ‘get used to it’ and these are things that we HAVE to try to control if we are to survive. The temperature can activate my Raynaud’s and my urticaria, but also my fibromyalgia and ear issues. If I sat next to someone with strong perfume I wouldn’t be able to breathe. If I used the ableist Circle of Control method – I wouldn’t be able to work at all – I’d become very sick and very disabled.
In a school setting – the things you can’t control are often:
· the fluorescent bright lights, having to use a pen or pencil, being told off for not sitting still, the curriculum etc
If I couldn’t dim the lights for my son – he wouldn’t be able to read (due to Irlen’s and other eye issues). Or telling him to sit still would render him effectively deaf. Having to use a pencil or pen causes my other child (and myself) a huge amount of pain. And the curriculum is so badly ableist that all of us have experienced discrimination and disability because of it. We homeschool because we have to – we don’t have a choice. We asked for these things to be changed or accommodated to make my kids ‘able’, but all schools are designed and built for typical kids and to exclude those with differences.
So, we took control of the thing we thought, and were told, that we couldn’t control: the school and the curriculum…. And we turned it into a good thing, a thing we can control – we turned it from an outer circle to an inner circle by realising that we could change things, and by not accepting an ableist school system. We were extremely privileged to be able to do this – others aren’t so lucky! But it doesn’t mean they should put up with that outer circle either – that outer circle is ableist, harmful and needs to change.
Like Dory says: “there’s always another way”. If you accept that you can’t control or change something – nothing will ever change.
Governments and schools set up the environment and the curriculum (the outer circle) to be as disabling as possible – and then blame the child’s inability to improve or control their inner circle; as the thing that’s the issue.
Please if you are coach, a therapist, a motivational speaker, a teacher or a parent – realise that if you spout the mentality of the individual should only try to control themselves and their inner being – and not those things around you – you may be effectively disabling someone and possibly simultaneously supporting systems and environments that harm those disabled people.
Instead: look at the outer circle as a set of barriers to be broken down or changed, and the inner circle as one that needs supports, aide and tools to cope and survive. Switch the outcome from blame of the individual – to blame of the outer circle; in order to break down those barriers and create truly abled people, societies and environments.