When Help Becomes Hindrance

HEDS Up! edition 1

Spikeless Cacti next to a framed chalkboard with 'To Do List' written on it.

#HelpNotHindrance 

Some people like to do things for those who are unable or vulnerable in some way. There's nothing wrong with that. Sometimes, though, it pays to view things from another perspective. 


Imagine you have a physical problem. A bad back, broken leg, sprained ankle, crippling stomach bug…Something that stops you being able to function without it being torturous for a few weeks, or even a few months. As you lie on your sofa, daytime television easing in to primetime viewing, your mind slipping ever deeper into boredom, your house becomes more cluttered and unclean. 

As you clear up after

their cleaning efforts, you watch the dirty water slosh

in the u-bend. Suddenly

the help didn't feel

so helpful at all.

The mess and dirt drives you mad and you’re infuriated that you’re unable to sort it all out, so you have to learn to ignore it. You do your best.  

You turn a blind eye to the bathroom walls that are still only half-painted because you haven’t been able to get up a ladder and finish them, and to the dirty floor and grubby suite. You try not to see the state of the rugs in your lounge, the mess in your bedroom, the litter lying in the hall. You tell yourself the lawn can go another week without being mown. You focus on the view out of the window in the front room, rather than on the crust of dust on the glass, highlighted by the sun streaming in. You start thinking it may be time to get a cleaner…If only you could afford it. Then help comes!  

Someone close to you, who knows your situation and frustration inside out and upside down, decides to do something for you. They take to your kitchen – wipe the windowsills and the shelves where you keep your cups, polish a couple of the worktops, wash the pets’ bowls and a few dishes, even the empty the bin. Finally they sweep your floor. Next, they attack the bathroom, mopping the tiles and rinsing the sink and shower down. They’ve shown the loo some bleach and a brush too. Sounds lovely, doesn’t it?

The place doesn't actually 
look any tidier than it did prior to you helper’s attention. Indeed, the things they 
did you could just 
about manage to do for yourself or, actually, didn't 
need doing at all.
But they left a half-load of dirty crockery in the dishwasher, as well as a saucepan in the sink, and another worktop covered in piles of clean laundry you managed to do a few days ago. You can’t put it away because it’s too painful to carry it upstairs. It’ll also take three trips, so it’s not a chore you relish.

In one kitchen corner is a bucket full of filthy cloths soaking in scummy, grey water. The dressers is covered in dust and the fish tank is still turning brown. You are unable to do any of it. The rank bucket is too heavy for you to lift, besides, you
can't bend down without it feeling like your spine is going to explode. Standing up to wander around with some polish is totally beyond your capabilities too.  While most of the floor is cleaner than before, it remains covered with bits around the bin and by the back door. 

The front room floor is woollier than a Shetland pony in winter, but on a 'good day' you have to vacuum on your knees, using the tiny head, and it’s just not happening for the foreseeable. The hearth is still covered with ash and needs cleaning, and piles of junk still sit here and there. And look! There’s that bag of shopping you bought three days ago. Yes, still waiting to be put away…

The place doesn't actually look any tidier than it did prior to you helper’s attention. Indeed, the things they did you could just about manage to do for yourself or, actually, didn't need doing at all. Not while all the other more basic chores are left unattended. Your smile of gratitude is wide, though, as you thank them and bid them goodbye. Finally free to stop interacting, which only made you feel worse, you climb the steps, pitifully hauling your aching frame to the bathroom. Maybe there’s a visible result of their efforts in there?

No. To your dismay, the smudges of mud on the tiles are where they've been for the last fortnight, the skin scum on the sink is visible in the sunlight when you look at it from the loo – which wasn't scrubbed properly and is scarred with lime-scale. The shower looks better. The bath hasn't been touched, and that is the hardest part of this room. There’s simply no way your body will hold up to it today. 
 
As you clear up after their cleaning efforts, you watch the dirty water slosh in the u-bend. Suddenly the help didn't feel so helpful at all.

What would have been a real help is the painting finished in the bathroom. What would have been great is the lawn being cut, or the hoovering being done. What would have been amazing is all the mucky pots being washed or the laundry being carried upstairs from where it’s far easier for you to sit and slowly put it away.  What would have made you feel so much better is knowing your fish had a fresh clean home.  

This may all sound ungrateful, but if someone only does the things they want to do when offering help, it’s not really any sort of offer at all. If a job is left only half done it isn’t really help. 

No Expectations
Most disabled people don’t expect to be assisted, and many strive to be as independent as possible, despite pain levels that ‘normal’ bodies can’t imagine operating with. 

 Many would love if more help was given, but don’t think it’s an entitlement, no matter how disabled they’ve been, or for how long.  
"The message it
gives is that we’re not 
worth a proper job
being done. It feels
like devaluation."
“I’ve had people who hardly know me remark about the lack of support I have.” Kim* is in her late thirties and has Ehlers-Danlos Syndrome (EDS) and a host of its associated condition, including significant neurological damage, muscle wastage and gastrointestinal issues. She’s also a single-parent with little to no contact with her extended family.  

“Doctors have pointed out that I have no support at all. Not in any practical sense. But I find it upsetting when someone comes over and wants to do something, but they only don’t do the full job. If you’re going to help person, complete the tasks you start. It’s not just that we have to finish any tasks they haven’t, but the message it gives is that we’re not worth a proper job being done. It feels like devaluation.”

Kim isn’t alone in this sentiment. It was echoed by another EDS sufferer, Emma*, who said the same, adding, “If someone can’t be bothered to see a simple chore through, it’s like they’re saying they not bothered about you. Another thing I can’t stand is when a person helps as long as they can pick and choose what they do. Rather than what I need them to do.”

Understandably, some of the ways disabled bodies need to live mean little idiosyncrasies exist because of pain. If it hurts you to bend down, it’s a significant aid if things are picked up off the floor for you, even though your friend would rather not deal with your kids’ dirty underwear heaped in front of the washing machine! It’s not always the obvious that needs attending to. A wouldbe helper may see the stack of grot in the sink and reach for the rubber gloves, but you may find it easier to wash-up than to load the laundry, because…Yes!...Your body can’t do bending over, remember?  

For many reasons, it’s not always easy for disabled people to ask for help. Unexpectedly perhaps, criticism is one such reason Kim is reluctant to reach out – even to official channels, when she really need to. “Social Services staff were assessing me in my own home. They knew nothing about my degenerative illnesses. I was told by one ‘Carer’ that I had to do more and they had people worse off than me. I guess she saw me standing when she came in the evening and didn’t realise I’d been in bed all day, only getting up when my son came home from school, and then going back to bed when he did. I was told I’m too young to need them. I cancelled the assessment and went without the help I need.”

Not everyone needs Social Services to help with care, when friends and family could easily lend a hand here and there. If you’re going to help someone less able than you, make sure you’re open to doing things you don’t really want to do! 

If you’re not, you’re only doing it to make yourself feel good, and not to genuinely, altruistically help another human. 

Instead of announcing the task you’re going to tackle, ask a straight forward question – 
“What can I do to help, that you're not up to doing today?” 
 
You may well be met with resistance, so just repeat it one more time. Just don’t push it. Doing something for another feels great, and we should all try to do whatever we can for those in need. Just don’t lose touch with the fact that it’s best not to guess or assume, or to expect those in need to ask for help. 

Even if the doorways are netted in cobwebs and the Alps of ironing covers the sofa, it could be that the only help that’s really needed is time spent chatting...

...Or watching TV with a cup of tea, ignoring the housework altogether.

 * names changed

written by #ysuWords

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