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  • Writer's pictureCarrie-Ann Lightley

"Just because I carry it well doesn’t mean it’s not heavy”: On disability and asking for help

As I write this I’m sat on my bed with my leg propped up with cushions under an ice pack. 

I have bursitis, a common injury for those who overuse their knees, which causes pain and swelling. 

When I’m at home and not using my wheelchair, knee-walking is my default position. Bursitis, on top of the Cerebral Palsy I live with daily, is the third ailment I’ve had to deal with in as many weeks; the others being a trapped nerve in my back, and debilitating sinus pain caused by an emerging wisdom tooth. 

Carrie-Ann on her knees with her little dog along for the ride

As well as being painful, fatigue-inducing and inconvenient, I can’t forget that all of these things are signs; signs that my body isn’t coping, signs that I need to slow down.

For as long as I can remember, I’ve had a somewhat conflicting attitude towards help and assistance from others. 

On the one hand, I’d never want people to automatically assume that I need help just because I’m disabled. If I need assistance, I’ll ask for it. 

However, recent life events have taught me that sometimes I’m so fixated on *coping* - and proving that I am self-sufficient, independent, and able to manage all that life throws at me, that I don’t reach out for help at times I really need it.

Disabled People are Valid, Not Vulnerable

My husband went back to work a month ago, after 3 months of us isolating at home together. And despite, well, a global pandemic, we’ve actually had a lovely time. I had more support with the day-to-day things that I used to just push through but find physically difficult, and our priorities shifted as we both learned to enjoy a slower pace of life.

Now he’s not home anymore. Over the last few weeks, I have found myself needing to be busy again. 

That slower pace of life has been replaced by working on my blog, writing freelance articles, and being active on social media, as well as filming and reading and learning and doing, and doing, and doing. 

I was craving that feeling of a ‘normal’ routine. I needed to feel useful and helpful and productive and valid. To be seen as something other than a so-called ‘vulnerable’ disabled person. As if my brain was screaming “you are so much more than your susceptibility to a virus and you need to prove that!” I’ll never be able to walk (and truly, I have no desire to) but I think that this internalised pressure comes from the part of me that wants to be The Best At All Of The Things, wonky legs and all.

In my article about why we need to stop demonizing relaxation, I confessed to my habit of overworking as a coping mechanism. When I was in therapy earlier this year, my counsellor told me that there are some lessons that we need to learn again and again. And I guess for me, learning to relax and not try to do everything is one of those. So, once again, I promised myself a routine of less doing, more being. To ask for help more so that I take on less. Prioritising meditation and time outside over housework and time hunched over my laptop.

Disability Really Can Happen to Anyone

And then, as often happens, the universe intervened. My (usually non-disabled) husband suffered a severe knee injury. 

He could barely walk and wasn’t able to help me with all of the practical things he normally does, like cooking, housework, dog walking and driving. This whole situation made my need to do go into overdrive, because if I wasn’t going to get everything done, then who was? For two weeks I insisted that he rested whilst I spent my days doing as much as any disabled human can; 3 x daily dog walks, cooking all of our meals, a frustrating attempt to change the sheets on two double beds that took over an hour... until I burnt out, and my own body started showing signs that this couldn’t continue. I needed to ask for help.

The concept of asking for help seems so simple, and yet, I think it’s one of the bravest things a person can do. Society tells us that, as adults, we should have our shit together. We should drink 8 glasses of water a day, pay our bills on time, cook ourselves nutritious, balanced meals, have a clean and tidy home, work hard, go to bed early. We should be able to do all of that and more, by ourselves, without burdening those around us and their equally busy lives. Because burdensome is exactly how it feels, to be a disabled person who needs to say “I am not able to do all of the things that you find so easy.”

Disability Grey Areas

I believe that my ‘mainstream’ upbringing has greatly contributed to my struggles with asking for help. I attended mainstream schools and colleges, often having to prove to officials with clipboards and no real expertise in disability that I was “able” (whatever that means) enough to be there, which meant hiding my struggles, sucking it up and getting on with it. 

Growing up I had no disabled friends, and because no child wants to be singled out, I did my best to keep up with them. Whilst I will always be grateful that I got to experience a childhood full of grazed knees, climbing frames and sandpits, which prepared me for the realities of living in an inaccessible world, I can’t help but think that this somehow paved the way for my need to feel total independence.

Young Carrie-Ann at school using crutches and calipers

Even the systems that are specifically designed to help disabled people are set up in a way that can reinforce the belief that we should be better at coping by ourselves. Because I can manage all of my own personal care – washing, dressing, toileting and eating – I'm not entitled to any care support from the government. I live in this disability grey area; too disabled to be able to cope alone, but not disabled enough to qualify for official support. 

Communication is Key, Disabled or Not

With no other option, I found myself accepting that I needed to reach out to family and friends. To tell those around me, who often admire my ability to deal with all that life throws at me, that I wasn’t coping. 

I wrote long, rambling messages with tears streaming down my face, describing our situation, admitting, that I was struggling. 

The universal answer, from every single person, was ‘how can I help?’. And, within a few days, I’d made arrangements for someone to come and clean the house, for help with walking the dog, and – perhaps most importantly – for a trip to the seaside with friends, to get some much-needed headspace and perspective.

The sun shining over Arnside beach

Because isn’t that what love and friendship is about? Good relationships are based on supporting each other - wiping away tears, lightening the load and doing something kind build stronger bonds and even closer relationships. 

I’ve learned that by prioritising communicating my needs properly and allowing myself to be honest and vulnerable, that I'm able to better accept my true self. To accept that, disabled or not, humans are social beings, designed to support each other.

As one friend put it, life has too many twists and turns for us to be able to navigate alone. If you’re struggling to cope, as so many of us do, reach out. Be brave. Ask for help.

Where Next?

Read more opinion pieces on life and travel as a disabled person.

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22 בנוב׳ 2020

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