Bringing disabled women together, mobilising
and sharing through lived experiences

This is a pilot project which was filmed / videoed pre pandemic in 2019 first presented by Culture Access at the Disabled and Proud Festival in Woolwich showcasing disability art and culture – a project in progress.

Building on the strong history of women’s activism, disabled women took taking photos of themselves/ or with help using smart phones to (re)create identities of themselves with selfies. Natasha Hirst took part and documented the women’s process and we created self-explanatory videos relating to their identities – as artists, as trade unionists, as activists, activists and journalists etc.

This is also a creative process that is inspired by Frida Kahlo’s work in her portrayal of impairment in identity.

***trigger warning*** medical and surgical trauma.

‘Making Space for Trauma’ is an ongoing series of digital collages and drawings, in which I use both found and personal images to re-contextualise recent medical traumas. This is a process I have found necessary to make space for and work through these trauma’s. In my experience as a young women with a chronic and rare condition and a history of medically documented trauma I have been frequently gaslight by medical professionals and having a history of trauma has often stood in the way of an accurate diagnosis and adequate care. On the flip side of this the trauma of not being believed, of being sick and of having to fight so hard for medical care has been completely overlooked by Western biomedical institutes which have not taken account of how traumatising being a patient can be. 

Charlie Fitz (she/her/they) is a sick and disabled artist, writer and medical humanities postgraduate. Her multiform projects explore experiences of illness, whilst aiming to resist and challenge the expectation that the ‘sick’ be patient or passive to medical paternalisms. She utilises photography, collage, digital and material forms in her work, exploring the boundaries between the creative, the academic and the activist. She is an exhibited artist and has had various written and visual work published in magazines, journals and zines.  See and learn more about her work at:www.sickofbeingpatient.comTwitter @CharlieJLFitzInstagram @CharlieJLFitz

This is part of the Sister Stories series.

Recently, I found out that a friend who shares my illness (Ehlers Danlos Syndrome (EDS)), a friend who was instrumental in my pursuit of diagnosis and proper treatment and who is a publicly visible advocate for disabled people, was being stalked by someone who accused them of “faking” and “has a friend who is writing an article about it.”

The “proof” that my friend is faking their illness? Sometimes they stand up to take selfies. Sometimes they go to see a band. They have tattoos even though EDS affects the skin.

In short, they do things that most people with EDS do, when we can. We can’t always, but when we can, we post about it online because this is the life we want people to see us living. Because we can’t tweet about our aches and dislocations and accessibility nightmares all day. No one would want to be friends if we did that, and we know it. So we cultivate carefully, and try to show as many “good days” as possible, even if a good day only lasts three minutes.

Sometimes I save pictures and stories instead of posting them right away. I wait for a day when I can’t leave my bed, so I’ll have something to talk about while I’m applying ice packs and heating pads and medications. The pressure to seem normal and fun is enormous. I am working with fewer materials than most.

If you go around trying to poke holes in people’s stories of medical journeys, thinking that you know
what life is like for them and how it should look on the outside, I want you to imagine something for me.

Imagine you got a car for your eighteenth birthday.

The car looks good, but it has some problems. Sometimes the A/C quits. Sometimes it stalls. It pretty much always shudders and knocks, but you and your friends all get used to that. You hardly notice it anymore. Over time, though, you start to think that somebody rolled back the odometer on this beast; it seems to have more frequent and serious problems than your friends’ cars. When you take it into a mechanic, it’s never just the brake pads that need replacing, it’s always the discs. The mechanic seems
a little baffled by your old-new car. They’re still happy to charge you, though.

You can’t afford a new car, and you can’t really afford to keep taking this one into the shop, either, so you go through a lot of duct tape and Bondo. You learn to do some work on it yourself, even though you don’t have all the tools. You spend a lot of time washing it and touching up paint to make it look presentable. Once in a while, someone compliments you on it, and you’re a little baffled because you know how it runs, but they don’t, so you smile and thank them.

At some point, you decide that even though your car is unreliable, you want to take a trip out of town. It breaks down in the driveway. You stay home and don’t mention your disappointment to anyone.

When you take it back to the mechanic, he says things are getting worse and will be even more expensive to fix now, but you don’t have a choice. You get the worst of it fixed. And still, it rattles and shakes and the driver’s side doors won’t lock and sometimes it breaks down for no reason.

Now imagine you can never get out of the car.

There is never a reason to interrogate a stranger about their disability.

Rachel Sharp is an author, activist, and lifetime member of the Somewhat Eccentric Persons Club.
She lives with chronic illness, plays ukulele, and tries to save the planet

This is part of the Sister Stories series.

We are excited to announce we are starting a independent living project – on what it means to disabled women – with thanks to the Smallwood Trust and the National Lottery Community Fund

From January to March 2021, we will be focusing on asking disabled women on how they regard independent living, how they access it to help them achieve resilience through the pandemic and beyond. Are there solutions – how do we connect with each other for peer support and influence policy in bringing our voices together and forging a different future for ourselves.

We will have a webinar and focus groups using online platforms while there are constraints of COVID19 and using other accessible means of communication. We hope to have videos and will explore possibilities together.

Alice Armstrong (coordinator) and msunnia (researcher) will be working with us on this project.

Please do take part in this project as independent living is important to all of us as disabled women, whatever our impairment.

Email for questions on this project hello@sisofrida.org,
twitter @sisofrida

We thank EVAW and Million Women Rise for adding us to the “Never Forgotten Vigil.”

Let us not forget. In #solidarity

See also the Safe Lives report on Disabled people and domestic abuse

We are collaborating with Culture Access to interview some people on intercessions: being people of colour and disabled and more. Does Disability History include our disabled voices/stories? It is good that DPOs have had events for Black History Month and impact for Disabled Black people but there are many other stories in solidarity.

See what Nila Gopal has to say on this topic

Nila Gopal

Eleanor Lisney spoke on the complexity of being intersectional – including of being a disabled woman of South /East Asian origin.

Eleanor Lisney

Sarifa Patel spoke on being a disabled Asian mother of colour

Sarifa Patel

There are more people to interview. We think its also good for the International day of Disabled people on the 3rd December. And to beyond those dates really to continue the voices of Disabled people of colour.

See the other videos at the Culture Access website, meanwhile here are the ones to date

Annabel Crowley

Shura Davey

James Lee

Fazilet Hadi

Aminder Virdee

Wishing everybody happy celebrations for the International Day of Disabled people (People with Disabilities)!

with thanks from support from the Woolwich Centre Library and in collaboration with Culture Access

Funded by the Isla Foundation

Like Elsa

Family gathered in the conservatory,

youngest niece, Isabella, watches me,

as I rest back on the comfy chair,

sweeping my straggly, static hair

into a messy heap, over one shoulder.

Smiling, she says to Christina, her sister –

“Hey look, Dodo* has put her hair like that

and it looks like it’s in a plat, and because

it’s…white, she looks like Elsa”.

I’m happy then, delighted to be like

their favourite Disney character;

it’s the best compliment I’ve had

since depigmentation began.

Like the Snow Queen herself,

in her spectacular ice palace,

a resplendent arctic blonde – different,

but shimmering and lovely.

I’ll take that and treasure it:

I’m like Elsa.

Wirral 2020

*Dodo – a colloquial Welsh word meaning ‘aunty’.

This poem has been published on my social media pages: Twitter/ Instagram/ Medium: @serensiwenna It is also on my slides for the Public Health, Private Illness Conference and will be performed as part of the poetry reading evening event associated with the conference. It has not been published or submitted anywhere else.

Hyperacusis Hell

They’re always at it, everywhere –

fiddling with keys, crunching

crisp packets, and rolling tissues

between their fingers – and I can’t stand

these sounds, so slight to the normal ear,

but horrendously thunderous

in my own personal hell.

And they’re opening and closing their pens too,

thumbs moving, in and out,

over and over, click, click, click, ARGH!

It’s a cruel irony isn’t it? Losing functional hearing,

but developing unreasonable sensitivity

to every murmur and whisper, disturbing even

the all-encompassing silence – promised to me;

It makes me grumpy.

This world is becoming increasingly alien to me,

every day, and gradually confusing,

as the small sounds drown out the more important ones –

and I can’t differentiate between them.

Hyperacusis is a hell – one I can never escape from.

Wirral 2020

*This poem was originally published in Welsh as ‘Hunllef Hyperacusis’ (Hyperacusis nightmare) in the literary magazine ‘Barddas’. I have switched out the word nightmare for hell during translation to retain the alliteration; I feel the essence of the poem is also retained.

Sara Louise Wheeler writes the column ‘Synfyfyrion llenyddol’ (literary musings) for Y Clawdd community newspaper in her hometown of Wrecsam. Her poetry, belles lettres and artwork have been published by Tu Chwith, Y Stamp, Gŵyl y ferch Anthology 2020, Meddwl.org, Barddas, Qualitative Inquiry, Centre for Imaginative Ethnography, and 3am Magazine. Sara is currently conducting an introspective project, exploring her embodied experiences of Waardenburg Syndrome Type 1 through a variety of creative and scholarly mediums. She is a Visiting Research Fellow at Glyndŵr University and lives in Ness, on the Wirral peninsula with her husband Peter and their pet tortoise, Kahless.

This is part of the Sister Stories series.

My experience as a patient has rocked my sense of self to the core, and one of my core values – regard for my profession as a Psychologist. Experience as a patient has extended and deepened anything I learned about psychotherapy and psychology, in training and at universities. My predominant experience of living in my body in recent years has been about pain management (and lack of) and debilitating bone deep exhaustion, to the point my brain no longer works – I lose speech and language, and it is all I can do to breathe. How patients are treated, how much work it is to be a patient, how systems are set up for the organisation and not the people within them, are all things I’ve been reflecting on.

What I now recognise as the harmful psychiatric perspective of ME/CFS that had sifted through into society – of ‘type A personalities’ and over achievers, adopting a ‘sick role’ – is a poor and damaging explanation of what is – in reality, a complex multi-system neurological condition that we just don’t know enough about to be able to treat it. These were beliefs I had soaked into my skin in the absence of alternative narratives. I can’t place their origin (in my life experience) but I now spot where they came from. This has been crucial – the ‘naming’ and attributing of responsibility to its rightful place is crucial in separating out what is me and what is not, what I need to carry and manage and work on, and what I can leave by the roadside as excess baggage that is not mine to carry.

Pursuing therapy to find the thing that was making me sick was frustrating, what I continued to find were layers of society and patriarchy offering narratives that were systematically constructed. I cannot be grateful enough to the therapist who sat with me unpicking all these things, also learning alongside me as I shared new knowledge and the research I was uncovering. The therapist took my word for my experiences. What happens for so many patients is that the healthcare practitioners they work with, even unwittingly, gaslight them through the subtle questioning of their experience – it is essential that practitioners hold open the possibility of society structures and narratives as being untrue, that they don’t know any more or any better than the person in front of them, and that the patient’s experience is not questioned, however well meaning their approach. If either or both parties are unwitting in this meeting it can add a greater burden to the patient.

The best therapy is equality – in finances and housing, healthcare access and treatment – and the best therapy has to be collaborative, based on an equal footing between patient and practitioner. As such it is imperative that therapists especially hold a political understanding and awareness of society and its many inequalities – racism, sexism, ableism, are all impacting on the air we breathe – if this isn’t recognised, it can exacerbate difficulties and increase the level of internalisation for an individual. Certainly, the work will not be therapeutic.

In starting a career in psychology I had a belief in science and its communication as being sound and fair. In living with a chronic illness I see how naïve that was – how research can be founded on judgement and societal stereotypes, how communication of research can be founded on those same societal narratives and structures of patriarchy – the fundamental baseline of who gets listened to.

As long Covid becomes established, people living with illness that, for generations, has been undermined and dismissed are hoping that old narratives can change, so those of us who have lived it will get our chance to be listened to. There is hope that the numbers of people with long Covid will form a large enough group they cannot be ignored so easily, while being heartbroken that this is happening to so many. For those of us who are living it, this tragic situation may contribute to having these energy limiting conditions properly acknowledged and addressed through research and understanding – and at the very basic level, of being believed. The more time passes the more I also see my arts background and writing as a part of the solution, for me, but also in changing narratives. I have been collecting books written by people about their ‘lived experience’ for years – because they are beautiful books, not always directly about their ‘lived experience’ but this happens to be a crucial part of their life. These books are different to the ones I would read as a student. And I wonder, why were these books not available, not on the lists of recommended reading. I think I am probably slow to this kind of thinking. There is so much else to focus on at the start: pressure to achieve, to compete, workloads and deadlines, applications and interviews. Psychology is a deeply competitive field, pressure to be bright and quick thinking is valued enormously. I liked the connections with people I’d make, I was fascinated with people and their lives and the difficulties they encountered. I enjoyed finding Cognitive Analytic Therapy (CAT – originally developed by a GP for the NHS), and psychotherapy practice, as it emphasised my more relational skills and fitted with how I viewed the world. It was also enormously beneficial on a personal level – personal therapy being a key element to the training (and one I think should be essential for anyone working with people, especially in a therapeutic capacity).

In time I am seeing all the things I believed be deconstructed. All the stigma and shame of chronic illness that I hadn’t always recognised working in services. There are complex ways of this happening without ever being questioned, but becoming a patient and seeing the other side of the fence things become clearer. Identifying and naming the sources and the structures, of the misogynistic approaches of medicine and society, of how anyone with a chronic illness or disability is required to ask (often repeatedly) for adjustments rather than expect society to be set up and inclusive from the outset, of the marginalisation of people of colour and minority ethnic groups, of just how much society is designed by and therefore set up for white men (although there is no great health care service for men with chronic illness either, but diagnosis can be made more quickly if you are a man than if you are a woman or person of colour). It chips away at all the challenges I have had to overcome within myself – that these were all my responsibility, that I should have tried harder, spoken more loudly, or differently, or to different people. It has taken me a long time to see, it is not me and it is not my fault that I am sick. And I am sorry it has taken so long, the harshness inflicted on myself for not being ‘better’ somehow is the cruelty inflicted by society. It is for this, and other reasons, that I am glad of my training and experience, that I return to the CAT model, and Psychology, and I can re-introduce these frameworks into understanding these structures and my own internalisation of them.

Writing and art helps to make sense when there is no apparent sense to be made. This is how narratives get re written and this is how society changes, how empathy can be built and grown – through books and art and language. Psychology helps me understand – my professional life is my route, I hope, to reconnecting with others who are now in positions of responsibility for other people’s care, for whom their narratives are powerful.

What I wasn’t taught, in all my years of training and experience as a Psychologist and Psychotherapist, was that crossing through that fence from practitioner to patient, is a normal part of being human. Visiting Sontag’s ‘land of the sick’ is a normal part of life. That it is barricaded with ‘do not enter’ and ‘hazard warning’ signs does nothing to ease the pain of those who arrive, often unceremoniously. And, perhaps, as healthcare professionals, we uphold a fallacy that we hold the keys.  If we were better prepared, if society was structured around this expectation and acceptance, the world would be a very different place.

Louise Kenward is a Psychologist, Cognitive Analytic Therapy Practitioner and Supervisor. Drawing on this background, along with her work as a Writer and Artist, she has set up Zebra Psych. This new project aims to raise awareness and understanding of energy limiting chronic illness. 
@ZebraPsych (Twitter & instagram) www.zebrapsych.wordpress.com

This is part of the Sister Stories series.

I’m hungry but I don’t want food. I’ve picked my favourite thing and it tastes bad. You’ve just asked me what I want and I’ve stared at you saying nothing for an awkwardly long time. Someone’s having a party and I’m looking at the menu online before I say yes, I’ll be there.

These are the things that happen when you and food are not always friends. If reading about my experiences may be triggering, feel free skip to the end where I’ve listed things that I’ve found helpful.

One of my earliest memories is discovering that yummy-looking food had medication hidden in it and tasted nasty. Another was being punished for not eating something I now know I’m intolerant to and causes me pain.

With support from friends – patient, understanding, supportive friends – I now eat a much wider variety of foods. I try new things more often than saying no, though I’m still quite particular. I think about my nutritional needs and respond to them as best I can, and accept when I can’t. I ask for more.

In my mid-teens, I weighed about 12kg. I’d been this weight since starting primary school. Every year, I’d be weighed, and see a consultant for my main condition, and a dietician. My weight would be noted, my food-related health issues would be noted, I’d be told to eat more and drink supplements, and then be sent away for another year. This went on for some time, until I switched to adult services which didn’t include a dietician.

I drank the shakes, sometimes, but that was it. I’d occasionally, very occasionally, try something new, but only if I fully had figured out what it was made of and what it looked like and what it smelled like and what the texture would be and if there would be consequences to me not liking it.

I’d hide food, throw away food, give away food, and lie about how much I’d eaten and drank. I’d try to make my leftovers look like less, try to eat the minimum amount I could get away with (but often couldn’t manage that). Of course, I was being “fussy” and “stubborn”; wilfully misbehaving for no reason, apparently.

In secondary school, I would say I had a headache, or backache, and be allowed to go and rest instead of attending biology lessons on nutrition and digestion. Yes, the A* student got away with skiving, as I’d read and could recite the textbook anyway. I didn’t want to compare again how my body didn’t work with how it should work, or what I ate with what I should eat. Certainly not in front of my friends and the whole class. It was my fault that I wasn’t good enough (or so I had been told), and I was too ashamed to confirm that again in my science book.

A very helpful community nurse took an interest once, and got me to write a food diary. She then pointed out that I wasn’t eating enough, drinking enough, or eating the right foods. As if I didn’t already know that. She pleaded with me to make changes, pointing out how much better things would be if I would only do as I was told. I felt even more ashamed, and nothing changed.

Nowadays, I’ve read that avoidant behaviour can be considered an eating disorder, particularly if there are impacts on a person’s health. People are meant to get supported, not shamed (though I’m sure that how things are supposed to go may not match up with everyone’s experience). The reasons behind a person’s choices are listened to and explored.

When I read this for the first time (thank you disability twitter), my brain exploded with “Why? Why did no one check if I had intolerances or sensory needs? Why did no one try to support me? Why did no one care enough to talk to me, really talk to me? Why did no one tell me it’s OK to not like things?”

I have my own answers to these questions, as right or wrong as they may be. Having one set of medical needs was complicated enough; why would anyone go looking for more? I was an embarrassment by not eating at social gatherings; why would what was considered bad behaviour be rewarded with attention in that decade? Kids with eating disorders were thought to look or behave a certain way; why would someone who doesn’t fit that pattern count?

And of course, there’s the usual answer: Disabled kids are too different. Mainstream services don’t cater well for disabled children and young people; specialist services focus solely on their specialism. People fall through the gaps.

I hope this has changed in the last decade and a half. I have.

My weight is low but stable. My body is an entirely different shape, having completed puberty 10 years late. My health is more reliable: I usually now don’t get constipated or feel sick or struggle to breathe through my nose. During childhood, this was my normal.

The only times I’ve got really ill as an adult are when my weight has dropped due to stress making me go back to old eating patterns. I’m more careful now with my stress levels, and have high-calorie low-effort foods ready and waiting.

I try new things all the time now. I make a point of it, a great big “F*** you” to the people who gave up on me food-wise. Sometimes it goes well, and I’ll be hooked from the first taste. Occasionally, it goes badly, and I’ll have a 2-hour panic attack after a single sniff.

There are 2 reasons for this great change:

1. Independent Living. I’ve been living independently with 24/7 support for years now. I am in charge in my own kitchen; I’m in charge of my own shopping. If I want to try something, I can cook it exactly how I think I might like it, knowing that the worst thing that can happen is that I order pizza instead. If I want to eat at an unusual time, I can. If I want to change what I’m having last minute, I can. If I waste food because I’ve over-estimated my appetite, it’s my money and no one else’s that’s been wasted, and I can learn to cook things that reheat well the next day or freeze well. If I have a sudden craving and no energy left to make it happen, Deliveroo will bring ready to eat goodness (I don’t like the gig economy, but in a “I feel a bit faint” situation, it solves a problem). In places where others control the menu, I don’t do well, and usually eat out or order in. At home, there’s no pressure, no consequences, no drama. I’m free to do what I like, whether that’s eat toast for lunch every day or spend an hour batch-cooking a masterpiece.

2. Friends. Great people who know that face that means “I don’t want to but don’t want to disappoint you” or “Give me time, I’m trying to figure out if I’ll like that” or “Yes, but not today” and know supportive responses and accept that. Great people who will trade a bit of their food for a bit of mine, and make it a 2-way thing between equals instead of a dominance/submission thing. Great people who will sit by me whether I greedily destroy the lot without sharing or take one look and metaphorically run away. Great people who will share recipes and think things through with me and suggest ideas, not make demands. Great people who won’t talk about stressful topics before or during meals, or point out how unappetising something looks, instead building a happy and safe atmosphere. Great people who ask “You want some?” only once and listen to and respect my answer, and don’t ask “Are you sure? No? Really? What about some of this? Or this? Or this?” until you give in and eat something you didn’t want. Great people who won’t stare at me to check if I like it, or look at my full finished plate and sigh frustratedly, but will stay on the main topic of conversation and understand my body doesn’t always give me a choice, and that my likes and dislikes aren’t always predictable. Great people who won’t buy food as a gift and create an obligation, but will join me to celebrate at a favourite restaurant and create a good memory. These are the people who have got me to where I am.

Things I have found helpful that may be useful to others, and would tell my younger self:

– Find out if you have any intolerances. Cutting stuff out without medical supervision can be dangerous, so seek support that will listen to your experiences and ideas.

– Learn what your body needs. If you already have a medical condition that affects how your body works, chances are that your nutritional requirements might be different to the recommended averages. If you can, find out safe maximum/minimum values for different nutrients and water. It’s easier to check against a known target than an unachievable “more” and “better”.

– Get good at cooking the things you already like. Have fun with it. Make the best ever version of it.

– Branch out from where you’re comfortable. You don’t have to try something completely different if you think it’s going to go badly. Go with something similar to something you already like.

– Grow stuff to cook. It tastes completely different. I find a lot of supermarket vegetables are full of excess water and sugar, and the fruits are pretty flavourless. I grow and prep and freeze and have food that actually tastes like food available for as much of the year as I can. Farmers’ markets and farm shops can also be pretty good, though some charge more.

– Go to a restaurant with friends and all order a different starter and a side each to share. This way, you have access to new food, prepared for you, but also a selection of reliable favourites with no obligation to try or not try. You can do the same with puddings too.

– Batch cook and freeze. This reduces the effort of preparing food when you’re just too tired.

– Keep standby snacks and shakes. Have options around that aren’t proper meals and aren’t nothing. There may always be days where you look in the fridge and go “nope”, and so I find having reliable not-quite-but-it’ll-do choices available can minimise the impact on health whilst taking the pressure of completely failing away.

– Say no. You don’t have to try anything at any time that you don’t want to. You don’t have to continuously challenge yourself. You don’t have to be perfect every day of every week. You don’t have to change unless you choose to, in your own way in your own time, without being driven by pressure from others. You don’t have to live up to someone else’s unrealistic expectations of how to take care of your health. Figure out what’s important to you right now and how you want to do that. You can be “weird” and “picky” and “boring” as much as you want.

– Relax. The people who best support me to eat new things are the people I can relax around. Put on your favourite music or a good film, grab a comfy cushion or a blanket. Make sharing food part of evening of pampering or games and laughter. Zero stress environments are the most successful for me.

– Talk to people you trust. Some of them may have similar experiences or positive attitudes, and I value their support. This blog was sparked by someone I mentioned all this to in a chat who instantly framed it as “unmet access needs” and I swear I nearly hugged my laptop.

From a contributor who prefers to remain anonymous

Whiffle

Flying high with my flock
It came as such a shock
to tumble
The engines all misfired
My vitality expired
And down I went
I tried hard to recover
as I plummeted at speed
towards a world that couldn’t quilt me
in my time of need
I wish that I could whiffle
with a lapwing’s landing flair
Manoeuvres would have saved me
in a torsion through the air
But I’m not a bird possessing skills
and wings to get me by
Just a woman trapped within one room
Wishing she could fly

Seven Boulders

looming above my bed
Poised and in position
with a blanket made of lead
One wrong move and they descend
locking into place –
to render me immobile
with pain etched on my face
Seven boulders:
One on my diaphragm
Two on my thighs
Two on my shoulders
Two on my eyes

.

.

Paula is the author of the graphic memoir The Facts of Life (Myriad, 2017) and three children’s books. Since becoming disabled and bedridden with energy impairment and pain conditions, she keeps a bedbound diary and writes poetry with the aid of voice recording. This work explores chronic illness as well as the natural world and her exile from it.  www.paulaknight.co.uk
Twitter: @Paula_JKnight
IG: @paulajkstudio

This is part of the Sister Stories series.