By Heather L.E. McKay
I hate the word chore. If you say it, or look at it long enough, it becomes like all things you say or look at too much – it becomes senseless, and that’s how I actually feel about all chores.
The word chore means (according to vocabulary.com): a duty or task you're obligated to perform, often one that is unpleasant but necessary.
Unfortunately, people conflate “chore” with “necessary” all the time. I agree that it’s nearly always unpleasant, but for disabled people they can become truly insurmountable.
Not all chores have to be done. And not all chores need to be done all the time. Chores are social expectations, or self-inflicted obligations. And as such – they are voluntary, and moveable/ or alterable.
If I don’t have enough spoons, I don’t have a shower, or perhaps don’t do the dishes, or leave taking out the bins for another day, or stop mopping the floor altogether. If I don’t have the energy to do something – then I pick my battles – I do the things that absolutely HAVE to be done, and I leave the rest.
I was standing talking to another mum at school pick up one day. And she was talking about how she ran out of time today and only mopped half the house. So, in all ignorance and naivete I responded: “oh well, don’t worry- maybe you’ll get to it next week, or the week after”. She was horrified by my statement, and I had no idea that I’d made yet another bumble.
She responded by telling me off and said it in a tone that broke no misunderstanding that she was disgusted that I would leave mopping the house for a week or two (little did she know I never mop – I hate it, I find ways to get around it). Anyway, she disgustedly added to her speech: “I mop the whole house every single day!!!!”. I honestly couldn’t believe it! And I put my foot in my mouth by accidentally snort laughing and saying: “There’s no way I’d have time for that”. My ADHD no filter mouth always trips me up.
She never spoke to me again, and I don’t really blame her. But I do blame her for her ableism. Not everyone has the capacity or ability (or time) to mop a whole house daily. She had self imposed a daily chore of mopping the floor, because that’s apparently what her mother had done daily for her entire life, so she carried the tradition on – I mostly felt sorry for her daughters – who I assume will also be pressured to do the same thing as they grow… I only hope they break the cycle.
We must realise that the chores and things we do every day are self-imposed, and/or socially pressed upon us. They are often completely unnecessary – and there is always another way.
In my book 4: I talk about this very thing, and I offer lots of tools and alternative ways to get around losing all your spoons.
For one example: if you can’t make your bed everyday (like I can’t); figure out what you are capable of doing. For many years, I used a fitted sheet on a mattress and washable sleeping bags – simply because I hardly ever had to wash them: as I’d rotate them with clean ones and wash them when I had the energy, and then rotate again. No making beds!!!! It was awesome. Eventually my SPD needs changed (I couldn’t stand how hot I was getting in bed) and I had to find a different way to sleep, and still not make beds.
My sister can’t sleep at all if she gets into a bed that doesn’t have perfect hospital corners in a military style perfectly made bed – so she makes her bed perfectly every single day, but finds ways to conserve energy in other ways. Like she never EVER, EVER cooks or goes shopping – I do it. Maybe if I didn’t do the shopping and cook all the time I’d have capacity to make my bed?
The point is: these are negotiable ‘chores’. They are things we decide to do, or don’t do - because they either steal or give us energy.
I love the phrase “pick your battles” – but it doesn’t just apply to arguing with your children – it applies to everything in life. If something is unnecessary or taking all your time or strength – find another way.
Asking for help, like my sister does (so I do all the shopping and cooking) is a really hard thing to do. She hasn’t “asked” me in about 30 years – we have a mutual understanding that this is how we live and survive together. She needs things from me, and I need things from her. We work to our strengths and support one another.
Look at your current chores and try to see it through a new lens.
What things are you doing that are sapping all your energy? What could someone take over for you (if you have that privilege)? What could be changed and altered to better suit your needs? What could you delete from your to-do list? Or perhaps outsource?
Talk to your loved ones, openly, honestly and without judgement. Talk about how each of you see or perceive each chore. Sometimes you will find that family members will honestly say something like “I have no idea why you do that every day – we don’t want it or need it”. If this is the case – you can hopefully agree to drop it or change it.
Some family members may say “I like playing with water – so I’ll take over watering the garden and washing the dishes – if you take over X and Y”.
Or another might say: I don’t have capacity for anything right now, can you take over for a week, so I can reset my nervous system.
Don’t expect ND children to do chores. Please I beg you. When you are a child, you are already dealing with so so much, and as a disabled child – it can become too much way too quickly and send us into burnout so fast it’ll make your head spin.
ND children are already concentrating on getting used to a world not built for them, possibly dealing with bullying: I don’t know any ND people who were not bullied as children – we are seen as different, and bullied for it. They are coping with learning everything at school – but it’s much harder for ND kids – we have to learn what the teacher is trying to impart, but we have to translate it from NT language into ND and then back into NT, it’s double or sometimes triple the work of other children – and we mask while doing it to prevent too much of the bullying.
We also struggle sometimes with the way things are taught in schools. Such as it being curriculum led instead of child interest led. This creates a dopamine deficiency and causes us to be UNable to learn. When our brain/bodies don’t produce enough dopamine to create enough energy or ‘motivation’ to do a task – we become unable to do it. Unlike typical children who can usually regulate their dopamine better to spread it more evenly across the day and keep attention and ability up.
The other point is about the demands of being a disabled child; the expectations of society to do things in a certain way at a certain time and to conform and obey - which we are often unable to do. Please read my blog on “resetting the nervous system” for more information about ‘demands’ and how they interfere with our capacity and ability – but also make life incredibly hard and rob us of any energy to do anything outside of school.
We need time when we return to our safe spaces (our home) from work or school to reset our nervous systems. Most children don’t have the cognitive development or the skills to cope with all of this, I as an adult don’t – so I don’t know why many parents expect their disabled children to.
Like Dr Ross Greene says: Children do well if they can!
Don’t give them chores – that’s the behaviouralist method. Of controlling what they do, when and how etc, and setting NT expectations of them.
But you still need them to help, right?
So, what do you do instead? You model helping others. You show and teach them how and why a task needs to be done and fully explain (in a way they understand) the role of the task and its importance.
You explain spoon theory to them – and explain the things that rob YOU of the most amount of spoons – not to guilt them, but so they understand that everyone struggles to do things at different times, and how your disability or ability can differ from theirs, or that of a sibling.
If you have an honest conversation with them, you will also be teaching them empathy and appreciation of what you do and why. Once they see all these things, they can hopefully fully understand the need to pitch in around the house – and it takes the stigma or ‘chore’ out of it and turns it into body doubling instead.
Body doubling is needed by so many ND and disabled people, it increases dopamine, which increases motivation and increases ability. Without it – everything can be a ‘chore’.
This is what my parents did for my sister and me. They did the chores, and helped each other out, and if we (as the kids) had capacity – we offered to help, or joined in, or did it without asking. Afterall – isn’t that what all parents want. Independent, kind, appreciative children that understand the need to do things but also actually want to help others – instead of having to be told to do something and begrudgingly do it – or hate you for it?
But this doesn’t happen if you don’t discuss if, if you don’t explain things. Sometimes – if you don’t explain, or you don’t discuss things, it can feel like all the work is one sided, or that people aren’t noticing that you need help.
Humans are not mind readers – we don’t know that you want help unless you ask. But ask – don’t tell. If your child or partner is PDA – telling is likely to backfire anyway – and any sort of possible demand can and will be ignored or thrown back at you.
Remember – disabled people can especially find asking for help impossible.
Don’t assign things to other people. Discuss it, collaborate, help each other.
Just because the person in question is a child doesn’t mean they don’t deserve the same respect you’d give to an adult. Treat them how you’d like to be treated. Would you be pissed off if you partner assigned you chores to do daily and weekly? Would you dump their ass? I would! So, I wouldn’t assign chores to my kids either – they deserve to say if they have capacity or ability and to have a say in their lives. It doesn’t need to be a fight- make it a collaboration – work with them, and within their capacity. And if they say they can’t – believe them.