I am well and truly fed up with people talking to me – or at me – about disability & independence.
You hear it in school. You hear it in college. You hear it in media about or relating to disability. Even the UK government calls the benefits it awards to disabled people “Personal Independence Payments”. And honestly? It gets on my tired, disabled nerves.
It gets on my nerves because very few people are truly independent. Have you ever ordered a pizza? You depended on somebody else to cook and deliver it. Have you ever made a phone call? You depended on the engineers who made that possible and on the person who sold you your phone. Even when people go off-grid, living self-sufficiently in reclaimed shipping containers, they’re often relying on the inventors and manufacturers of solar panels. I cannot think of a single person who is actually truly independent, because humans are social animals who are hardwired to rely on, and to help, other humans.
So why do I, as a disabled young adult, have to strive for some arbitrary level of independence that is vaguely defined and contrary to human nature?
People talk about independence like it should be the end goal for many folks with disabilities. The ideal disabled person, in society’s eyes, is one who can go places alone, do their grocery shopping on their own, complete household tasks unassisted and rely on nobody. Which is especially weird when you consider the number of adult men who have no clue how to do laundry or where to find vegetables in a supermarket, having sailed from life with parents to life with a partner who, if they’re female or assigned female, will do all of those things for them. In suggesting that disabled people should aim to – or want to – reach a level of independence whereby they don’t need to live with somebody or use the services of a carer, we’re holding disabled people to a higher standard than lazy men without disabilities.
Holding disabled people to high standards isn’t new, of course; one need only glance at the coverage of any Paralympics event to realise that disabled people are expected either to be groundbreakingly good at something or to melt into the background, meek and inoffensive. Expecting disabled people to be more independent than their abled peers isn’t outside of the norm, but it is damaging and hurtful to those of us who might never be able to live alone or who might always need to phone their mum before sending an email (which I definitely do). I’ve learned not to feel bad that I’ll never be a Paralympic athlete, or Rain Man, but I still feel bad that I’m not the wholly independent disabled person that I’m allegedly supposed to be.
I propose that we shift our focus away from independence, and instead look to a more subjective, holistic measure of quality of life for disabled people: dignity.
The wonderful thing about promoting dignity, rather than independence, is that its parameters change from person to person. For example: Alex, Bobby and Carly all have a disability that makes unlacing boots difficult for them. Alex feels undignified when xir partner unlaces xir boots for them, so xe spends the extra time practicing unlacing xir boots and mastering the use of a shoehorn to make the process easier. Bobby feels undignified when he’s bent over, struggling with his laces for fourteen full minutes, so he asks his friend to give him a hand. Carly, meanwhile, finds that both of those options undermine her personal sense of dignity, so she only buys and wears boots with elastic and no laces at all.
That last sentence is important – specifically, the part about Carly’s “personal sense of dignity”. We all experience dignity differently and can find different situations more or less dignified depending on our cultural backgrounds, personal hang-ups and many other factors. Independence is a rigid, standardised goal that looks similar for everybody who strives for it, but dignity is a personal, flexible goal that is achievable for everyone.
Some people probably wouldn’t feel dignified rocking backwards and forwards in a shopping centre, humming to themselves – but that, for me, feels more dignified than staying home, and certainly more dignified than a full-scale meltdown in a public place. The beauty of it is that I get to decide what makes me feel comfortable and act accordingly, without worrying that I’m not “independent” enough, and also without any external pressure to eventually “progress” to not using my tried-and-tested coping strategies, including reliance on my support network.
I don’t want to strive for independence. I’m a human, living in society, and I want to be able to lean on other people when I need to without guilt. I’m going to strive for dignity instead, however that looks for me.
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