Staff blog: The importance of sharing lived experience

Photo of a sign that says "What's your story?"

by Sam Earle, Project Officer, Equivox 

As disabled people,  we know that our specific conditions continually shape our lives in myriad, subtle ways. The effects of disability on our everyday lived experience are too numerous to count, and this is why the bits that we choose to reveal to others are really just the tip of the iceberg. Our disability communication philosophy is premised on the logic of choosing one’s battles: if we were to mention every last detail, even to those closest to us, we’d never manage to talk about anything else! But we know that our audience would tire quickly – and we can’t afford that. The thing about being disabled is that we need support and we need it for the long haul. But this can mean that much of our actual lived experience of negotiating life goes unremarked, unnoticed and therefore, not understood.

And, for many of us with chronic illness and disability, this pervasive lack of understanding among family and friends, acquaintances and even medical professionals of what our specific conditions actually mean is one of the worst problems we face. Dr William Mitchell, a rheumatologist with a healthy Tik Tok following (@drbillymicthell) says, people with invisible illness “go from doctor to doctor, nobody pays attention to them, nobody listens”.

When our lives are so poorly understood, it is easy to feel isolated and lonely, unsupported, perhaps even unloved. And it is easy to believe that this lack of understanding is because of lack of concern, lack of interest or is a sign that we are not being taken seriously; that our experiences are trivialized and considered unimportant.

In some cases, especially in the medical professions, this is true. But another reason for this lack of disability awareness is that, quite simply, most dimensions of lived experience of specific conditions are simply hidden from view. As Gary Burgess, the late ITV presenter who developed ME, commented: “Until I had it myself, I didn’t quite understand what a hidden disability is, and how all-encompassing these symptoms are, because you simply can’t see them”.

Even if we understand, on paper, the list of symptoms most commonly associated with a specific conditions, this doesn’t mean that we know what they are like to actually live. Everybody knows what tiredness is, but only those with fatigue know that tiredness and fatigue – though seemingly similar – are emphatically not the same thing. But it can be difficult to know that you don’t know!

The following analogy hopefully demonstrates the difference between understanding symptoms conceptually versus phenomenologically (i.e. actually experiencing them in the context of your life). If we see a pair of trousers in a magazine, and we know their function (you wear them on your legs) and style (blue denim drainpipes) and form (size 12), we might assume that we have got the measure of them. But this is forgetting that seeing something on a page tells us nothing about what it is like to actually wear them, to wear them in different places, in different social settings, in different combinations, in different climates and seasons. Maybe they are itchy, maybe they don’t sit right around the waist, or they are too cold in winter, too sweaty in summer, too casual for work, too Gen X, or they don’t go with your favourite jacket.

Disability is a bit like this: you can read a list of symptoms and think you understand them, but that list tells you nothing about experiencing them at certain times of day or year, when the weather is too cold or too hot, in work settings, in intimate settings, in social settings, what it’s like in combination with other illnesses, types of disability, life events.

Reading about fatigue, for example, tells you nothing about the lived experience of fatigue: what it’s like to repeatedly miss out on friends’ weddings; of having to give up your job or your studies; of the concomitant loss of identity, self-worth and social status; it tells you nothing not being able to stay with family or friends because the risk of not sleeping well could mean you can’t function properly for a week or may trigger a migraine.

In short, there isn’t really a substitute for lived experience when it comes to understanding conditions and impairments. But listening to the experiences of disabled people is the next best thing.

This matters because we need to feel listened to and respected. Kidd and Carel argue that a there is copious evidence of “persistent experiences of feeling ignored, marginalized, or epistemically excluded by health professionals” When we recount our experiences to medical professionals or family, only to have them undermined, dismissed, gainsaid, or gaslit, it is hard to feel anything other than unvalued and unrespected. This can have significant mental health implications. The author of one study notes that “the disconnect between what the chronically ill person experiences and the lack of validation from their healthcare practitioners, friends, and family can leave her/him feeling depressed, hopeless, and alone”. And this is on top of a hefty catalogue of physiological and mental symptoms!

The pervasive culture of being ignored, undermined, patronised, dismissed and so on is a form of what is called ‘epistemic injustice’. Epistemic injustice, a term coined by the philosopher Miranda Fricker, refers to the way in which certain groups (in the present case, disabled people), are not taken to be authoritative sources of knowledge.  As Byskof put it, “Epistemic injustice is the idea that we can be unfairly discriminated against in our capacity as a knower based on prejudices about the speaker, such as gender, social background, ethnicity, race, sexuality, tone of voice, accent, and so on”. That disability hasn’t made it to this list is itself revealing of the extent of the problem!

What is needed to combat the pervasive problem of lack of disability awareness is a culture of respect and empathy: of putting oneself in someone else’s position in order to decide how best to respond and act, whether that person is a patient, a friend, or a colleague.

Whilst we cannot make people listen or empathise (and heaven knows we’ve tried!), what we as disabled people can do is commit to resisting the stigma and shame that it is hard not to internalise, and to sharing our lived experiences openly, candidly, widely. In turn, we can listen with interest, care and humility to experiences that are beyond our own.

At Inclusion Barnet, we think that, through giving space to sharing the nuances of lived experience, we can start to unravel some of the stigma around disability, increase empathy, and tease out some tangible interventions that can make life more fulfilling and purposeful for disabled people.

We have therefore launched a new campaign, Equivox, to do just that. We encourage disabled people to raise their voices by making short videos or writing a paragraph shedding light on their own experiences. Equivox’s hub will be on Instagram, where there are large communities of disabled people already and where it is easy to share videos. However, we will also share our stories on Twitter, and on the Equivox blog. If you’d like to share your thoughts, but would prefer not to make a video, we also want to hear from people in text documents, mini photo-essays, via text, email or voice note.

By contributing to a culture of sharing and empathy, by providing candid explorations of what living is like for people with our conditions or impairments, we can create a rich resource to share with family, friends, colleagues, and medical professionals to help them understand what it really like to live in our shoes.

 

To find out how to get involved, go to the Equivox webpage. You can follow us on Instagram @equivox_campaign and join in the conversation.

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