Bringing disabled women together, mobilising
and sharing through lived experiences

This was published in May 2022

Gender, Disability, and the Environment

see transcript for discussion

On 24th March, Sisters of Frida (SOF) and the National Council of Women of Great Britain (NCW) hosted a discussion, titled ‘Gender, Disability, and the Environment’. The panel consisted of Khairani Barokka, Asha Hans, Rhine Bernardino, Harrie Larrington-Spencer, as well as Carmen Yau (who chaired the session).

In line with the 66th Commission on the Status of Women, an annual two-week global conference, SOF and NCW contributed to the priority theme of ‘Achieving gender equality and the empowerment of all women and girls in the context of climate change, environmental and disaster risk reduction policies and programmes’. Drawing on the experiences of disabled activists and researchers from various countries, this event examined crucial environmental issues in relation to disability, including eco-ableism, inclusive sustainability, accessibility and nature, as well as interconnection and disability climate justice. Surprisingly, the intersection between disabled women and the environment is a largely untouched topic of discussion. Yet, during the event, panellists provided clear examples of the significant challenges that the environmental crisis poses to a vast majority of Deaf and disabled women across the world.

Climate change policies, environmental decision-making and contingency plans have often failed to include Deaf and disabled women. With the rising sea levels, flooding and snow melting, disabled women are more likely to face serious consequences as they are likely to experience poverty. For example, disabled women in India who work as farmers are likely to be forced into migration and have their livelihoods taken away as they can no longer provide for their families in climate-affected regions. With increasing pressures to feed families, 70 per cent of food is needed but agriculture is an impossible reality for disabled women in India.

Another challenge is setting up cyclone shelters, creating infrastructures to find them and making sure that they are friendly for disabled people. Climate disasters, such as typhoons in the Philippines, also underline the expected responsibilities of disabled women to carry out domestic duties, including the burden of survival, looking after the family, and dealing with emergency situations which are caused by climate change. In addition, environmental issues place additional pressures on indigenous disabled women, who are disproportionately affected by land ownership and weapon manufacturing.

Transport justice also offers an important aspect which needs to be considered within this debate. Inclusive active travel with different forms of mobility aids and types of sustainable transport, such as cycling, can help to reduce carbon emissions and challenge traditional stereotypes associated with masculinity in the United Kingdom. Disabled people are commonly spoken over in this discussion, overlooking the additional problems that disabled women often encounter related to abuse, and protective measures.

With unexpected climate crisis challenges and issues, disabled people are faced with greater uncertainty. Disabled women, including indigenous sisters, need to be at the table when discussing environmental policy, and consulted in decision-making processes. Deaf and disabled perspectives must be included in the conversation of climate change – we need to be heard in all the invisible spaces that Deaf and disabled women live in. Grass-roots communication with disabled women in local communities and governmental recognition of these perspectives are therefore central to finding more effective, disability-inclusive solutions, and mitigating the current and future environmental challenges. Ultimately, there is no climate justice without disability justice.

Report by Kirstie Stage

We deserve more

It’s been a pretty shitty 2 years and a little bit of pandemic, and so much more. The usual cares of life as a disabled woman did not pause, but were turned up, and our support structures, escape hatches, and pressure release valves were removed.

No amount of home spa kits, emergency chocolate, meditation podcasts, journaling or posters of kittens telling us to hang in there is going to get us out of this. They might get us a brief moment of joy or motivation, and are worth doing for that alone, but that’s not enough. “In case of emergency, eat chocolate” doesn’t work when there’s a new emergency every day, or an ongoing battle to simply survive.

I’m sick of Self-Care. I know, that’s unthinkable, but I’ve said it and I’ll stick by it. I’m sick of being told to “take care” and “hope” and finding nothing better to say to others. In these times, it’s not enough. I need more words and I don’t know what they are. Netflix and a cup of tea and a snack might get me breathing right again, but it’s not enough. We need more than Self-Care – we deserve more than Self-Care.

We are told the idea that in a world that pushes you back with negative attitudes, loving yourself and showing that through acts of self-kindness is the most radical thing you can do. It has it’s uses, but it’s nowhere near the top of the list. Entire industries and billions in profit have been built from the attempts of the rightfully upset to avoid being crushed by the steamroller of life.

Radical Self-Empathy goes a step further, and may offer another level of relief: It’s OK to be sad that more than a thousand people a week are dying from Covid-19 in the UK. It’s OK to be angry about the things that have happened, and are happening, to you and around you. You feel how you feel, and you have a right to own those feelings.

You can take it a step further, and show Radical Empathy to others, and say “That’s shit” and “O fuck” when something bad happens to someone. I find it more comforting than “take care”, but some others may not find mutual swearing in any way an improvement to the situation.

Even when Radical Empathy, whether shown to ourselves or others, is performed to perfection and meant sincerely, it’s not enough. Sometimes I just don’t want to share how I feel, or put the knowledge of something terrible into someone else’s brain (though I know my friends want me to not hold anything back), or to be validated about something I already know to be true. Though sometimes I do. We need more than empathy – we deserve more than empathy.

We are told in a world that ignores your feelings and the feelings of others, taking time to understand and showing empathy is the most radical thing you can do. It has it’s uses, but it’s not a full solution. Entire industries and billions in profit have been built by the urge to show off just how much we care, flowers that die in a week and gift cards made of deforestation; and the need to have difficult conversations and confront reality, from 24/7 news channels to self-help books and tech-giant sponsored Youtube videos of how to unroot discriminatory ideas from your brain, fuelled by the worthwhile desire to not be that asshole who made things worse by denying that people are being crushed by the steamroller of life.

Restorative justice is the next level often recommended to deal with a situation that’s hurt someone. “You could write to them.” “That’s not legal.” “You can get compensation for that.” It’s powerful, and often satisfying. It can protect our futures, and those of the next generation. But it’s hard, and takes more energy and time than may be available, or healthy and sensible to give. It involves a large number of people agreeing to change, the barriers can be huge, and unjust themselves.

In some situations, there is no justice to be had. No matter what is done, no matter who apologises or changes their policy or overhauls the entire structure of what they do, what has been taken can never be returned. Restorative justice cannot restore before. You can’t fix it, not always. You can stop it from happening again, sometimes, but that’s as far as it goes. Justice isn’t enough. It could never be. We need more than justice – we deserve more than justice.

We are told the idea that in an unjust world, fighting for universal justice is the most radical thing you can do. It has its uses, but it’s not a complete solution. Entire industries and billions in profit have been built from the attempt to dismantle the steamrollers of life, but it won’t restore those who were and are being crushed by them.

Given I’ve just shaken my head at the popular solutions, you’d be forgiven for thinking I’m about to unveil some grand plan for removing all inequity and removing the pain of what it has done.

Guess what? I’m not.

I know what the world I want for us to live in looks like, and sounds like, and smells like. There’s clean air to breathe, but you can’t because you’re laughing so much, along with the others who are laughing too. You laugh so much you spit tea out of your nose, and don’t feel embarrassed because there’s no shame in this place; everyone else is too busy wiping laughter tears from their eyes. You are understood without explaining. You’re being taken care of and are taking care of others in return. There’s no need of self-care, or self-empathy, or restorative justice in this place. Nothing bad has happened, not here, and it couldn’t.

That’s what we deserve

Given I’ve just shaken my head at the popular solutions, you’d be forgiven for thinking I’m about to unveil some grand plan for removing all inequity and removing the pain of what it has done.

Guess what? I’m not.

I know what the world I want for us to live in looks like, and sounds like, and smells like. There’s clean air to breathe, but you can’t because you’re laughing so much, along with the others who are laughing too. You laugh so much you spit tea out of your nose, and don’t feel embarrassed because there’s no shame in this place; everyone else is too busy wiping laughter tears from their eyes. You are understood without explaining. You’re being taken care of and are taking care of others in return. There’s no need of self-care, or self-empathy, or restorative justice in this place. Nothing bad has happened, not here, and it couldn’t.

That’s what we deserve

By an Anonymous Author

Straddling Identities

I belong to a few communities, but they do not often link up. It feels like parts of my identity are not visible or ignored by the other parts. This feeling of being an outsider is exacerbated during a crisis like the pandemic, as a disabled woman of colour of East/Southeast Asian heritage. Needing to shield and self-isolate (as a disabled person ) made time to reflect and organise differently. I had started to connect with ESEA Facebook and Instagram groups and started attending events. But not all venues/community centres are wheelchair accessible, and I am saddened by that. As a disabled activist, I frequently call out on such venues because there is legislation against this but I am loathe to do this in my own community spaces. Is this a double standard on my part? I am being excluded by my own community – in a space where I can use my mother tongue.

As I write, it is Disability History Month (DHM) (18 November to 18 December). Most people know of the Black History Month (BHM) but not many know of the DHM, not even disabled people themselves. Due to COVID19 restraints, I did some online interviews of the intersection of being disabled and people of colour, including with disabled people from the ESEA community to mark DHM. There is a theme each year and last year it was on Access, this year it is Hidden Impairments and Disability, Sex and Relationships.

There has been none themed yet on intersectionality and so last year I collaborated with a few disabled friends of colour on online videos on how they perceived themselves with the interlinking identities of being disabled and people of colour. Amongst them were people from the East and Southeast Asian communities. Disabled people are found in every sector of society – we are very diverse with a cross section of impairments: physical, visible, learning disabilities, mobility, vision, hearing, neuro diverse. Some of us have our impairments from birth and some have acquired impairments from accidents, illnesses or they can be age or mental health related. One barrier, among others, we all share is the stigma from being disabled. This stigma is even more pronounced among Black and minoritised communities, we are less likely to self-identify as disabled.

Disaggregated data has been signalled as very important in UN shadow reports such as the CRPD (Convention on the Rights of Persons with Disabilities) and CEDAW (Convention on the Elimination of All Forms of Discrimination against Women) and certainly in the pandemic, to ensure that everyone is included when it comes to strategy and policy decisions. However, data as regards to gender, race, sexual orientation etc – all the protected characteristics are not always recorded. At Sisters of Frida, a Disabled women’s collective, we did a report on Disabled Women’s perspectives and how COVID19 has impacted on their independent:

Our briefing ‘The Impact of COVID 19 on Disabled Women from Sisters of Frida’ illustrates that most Disabled women are already on low income. We are more likely to provide domestic care, less likely to be employed, and are less financially independent. We also know that women do not all have the same life experiences and this needs to be reflected in policy making. For example, Disabled women of colour are disproportionately disadvantaged due to racism, disablism and sexism. Disabled lesbians face social exclusion from the LGBTQIA+ community and disability rights groups. While some data exists on some matters affecting Disabled women such as unemployment, intersecting identities such as race, class, sexuality and gender diversity are not taken into account. Therefore, when considering policy on disability issues, it is important that different Disabled women’s experiences are included. This report attempts to incorporate some intersectional depth to Disabled experiences of the pandemic.

Data on how the pandemic has affected the ESEA community is not easy to extrapolate. There are reports such as on Filipino nurses in the UK. However, as far as I know, there is no data breakdown on ESEA disabled, let alone on how they are affected in the pandemic. We can venture a guess on the disruption of family lives because of lockdown. BIPOC/ BAME older folks and disabled tend to have a higher dependence on family members for care duties. I did a video as part of the Sisters of Frida’s report above in which I spoke about the impact of COVID19 and briefly on ESEA racism. However, I think my friend, James Lee, speaks best on this point of being both from the ESEA community and being disabled during this pandemic. James is a disabled consultant who consults for grant funding organisations. His parents are immigrants from Singapore. He remarked that as a disabled person of colour, he is hugely influenced by his parents who are also both disabled people of colour.

On my question (in my interview with him) as to whether the pandemic and the specifically discrimination and violent attacks on people of East / Southeast Asian origins, affected him or if he had any thoughts on that, he responded:

I think that clearly there was a demonstrable rise in racism and in hate crime incidents against people who were of the Southeast Asian heritage or appear to have a Southeast Asian heritage and that all started with I think some of the unhelpful rhetoric on around the world about how we talk about the virus about where you know people deemed case zero to be as it were where people felt the origins of the virus came from.

A lot of that was driven by some of the unhelpful rhetoric around that … It was frankly racist rhetoric – calling things like the China virus and so forth. … It’s horrendous that that happens, I think that if you are a disabled person of Southeast Asian heritage you feel and you have the danger of feeling an even more acute vulnerability to that, and I hate the word vulnerable, I hate to use, I know we use it so much when we talk about disabled people in the context of COVID but I’m talking about vulnerability in the context of hate crime here.

We know that hate crimes against disabled people are hugely underreported; that they are rarely followed up that they rarely end in any form of judiciary action.

To be both disabled and a person of Southeast Asian heritage, I think puts you at an even greater … it leaves you feeling so much more exposed, so much more targeted and singled out. And it may well be that the people all around me that the thought had never crossed their mind to say anything that was racist or to say anything that was ableist. But there is a level in which we talk about internalized ableism we talk about internalized racism and there is a level to which that you can’t help but have that creep into your psyche a little bit. To the extent where you know – I would go to the shops and I think all right – do I, you know – are people looking at me more?

So I’ve got what I like to think is a relatively thick skin. I’ve been a wheelchair user for a very long time I, you know, don’t bat an eyelid at the occasional lingering glance or the occasional, you know, I almost said longing stare. There the occasional, the occasional lingering glance or like if someone looks at you and you know that they’re thinking something or you project that they’re thinking something slightly unkind as disabled people may do but I think that that combination of factors – the prevailing mood of racism at a time when there was also this huge issue with disability hate crime is just – it’s not a pleasant combination.

Realising the different identities and my own specific heritage, I applied to be one of the directors of the End Violence and Racism Against East and Southeast Asian communities (EVR) and am honoured to be accepted. I hope to work for the identities I belong to with the passion I feel for justice, equity and inclusion for everyone.

– Eleanor Lisney

This article was first published by ESEA Hub.

City of Women London

This collaborative public history project ‘City of Women London’ aimed to redraw and reimagine the classic London Underground map to produce an alternative map, replacing existing station names with the names of remarkable female or non-binary Londoners who have had an impact on the city’s history.

Led by writer Reni Eddo-Lodge and actor Emma Watson, who worked with writer and activist Rebecca Solnit and partnered with Transport for London (TfL), the project – called City of Women – draws from figures in arts, sports, activism, science, media, law, medicine and beyond. The digital version, led by Dr Leah Lovett (UCL Centre for Advanced Spatial Analysis), allows people to learn more about each person and their lives. The online map launches with featured biographies and interviews from contemporary women and non-binary people.

We launched this e zine last year in October, 2021. We decided against calling it a newsletter because it’s not just about our news but the voices of disabled women and non binary people, showing opinions, reflections and creative pieces.

We had members who wanted the possibility of sharing some of individual pieces so we’ re posting here for easy retrieval later.

We need you here

From Fleur Perry
Fleur is a law student and disabled people’s activist living in the South West. Her main interests are accessible housing and Equality Act breaches.

Fighting for your needs and your rights can be draining in every way. You push and push against a sea of eyebrows slightly raised in amused disbelief, or bent into a sharp frown of “How dare you?” or receive the same flat emails carefully constructed to make “Go away” sound like good business.
If that seems familiar, you are not alone. You don’t need to fight this alone. Every member of the SoF community has met a barrier that needs smashing. As disabled women and non-binary disabled people, we know the impact it has, what it feels like, and have words for feels that non-disabled people have never had to know.
We share those experiences, the bad and the good. We share knowledge and resources and music and poetry, building context and learning from each other. Judgement and shame, intrusive questions and gossip are for somewhere else – not here. Mutual solidarity, inclusion, and making space are key principles.
We want you here. We want your opinions. We want your voice. Got something to say that no one’s ever said before? Say it here. Know something that you don’t think will make sense to anyone else? Try us! We want to understand. You will be heard. You will be believed. You will be valued.
We think this is the first step to change. If we want to try to do something to make our world a better place to live, it has to work for everyone, and that’s means we need everyone. If we don’t have you, we’re missing out.
I think the community is the most valuable part of SoF. The reports and opportunities to campaign on some of the biggest issues in the UK today are all built from the experiences of individuals, and the time and energy they each give to making sure that knowledge isn’t lost, but unleashed.
What do you want to say?

“Disability justice is the art and the practice of honouring the body” An interview with Lydia X.Z. Brown

In this interview with Lani Parker of Sideways Times, Lydia X.Z Brown talks about disability justice as a praxis which honours the body and the whole person. Disability justice is a radical framework which requires understanding the interconnected nature of oppression and that we must tackle all forms of oppression in order to change the system we live in. We also talk about differences in language, tensions within disability movements and the importance of using a variety of tactics amongst other things…

Read or listen to it at Sideways Times. Thank you, Lani and Lydia for the podcast.

We are warriors

from Sarah Rennie. 

Sarah is a former solicitor, her day-to-day work is research and governance advice. However, Sarah delivers disability equality training nationwide and acts as a consultant for select clients on internal equality working groups.

I owe a great deal to Sisters of Frida.

Years ago, I was asked me to join the steering group and I experienced a major case of imposter syndrome. Looking back – I’m not going to lie – I did have a lot to learn. I was in my late 20s and feeling pretty unsure about my identity. In fact, I would sometimes feel uncomfortable around disabled people due to what I now realise is a classic case of internalised ableism. I was a feminist, a solicitor-turned-access-consultant, a feminist and had started attending disability rights protests. Sheepishly, alone and stood at the back.

Within Sisters of Frida, I saw myself as the boring but useful person who could help with governance and report writing. In a space with such incredible and talented disabled women, I was just in awe. I listened a lot and absorbed their ideas and critiques like a sponge. Whilst I battled my insecurities, I was made nothing but welcomed and treated as one of the gang.

After helping out where I could, one of the first projects I really got my teeth into was the Serious Crime Act and the defence to the crime of coercive behaviour in an intimate or family relationship. I represented Sisters of Frida at the UN in Geneva, along with other DDPOs, to present evidence of violations on disabled people’s rights to the UN Committee on the Rights of Disabled People. This was one of the greatest honours of my life.

Over the years, my confidence grew but so did my personal self-esteem. I finally felt comfortable in my own skin and proud to be a disabled woman. Whenever anyone asks why, I always credit the experiences I had and friendships I made through Sisters of Frida.

But my newfound confidence in activism was bitter sweet. In 2019, I was about to face a pretty tough challenge: the block of flats I live in is wrapped in cladding like that of Grenfell Tower and riddled with fire safety defects. I knew that disabled people were facing additional financial and safety issues, such as lack of savings or means of escape, so I co-founded Claddag, a disability action group, with another disabled woman. Sadly for me, I knew I couldn’t run the campaign and fulfil my commitment to Sisters of Frida so I had to resign from the latter. As expected, the team understood completely and have given me loads of emotional and practical help with Claddag.

If our fight for justice in the building safety crisis is successful, then my first task will be to knock on Sisters of Frida’s door and ask if they’ll take me back to support with the work. As they are a group of compassionate, inclusive, uplifting and strong warriors and I have no reason to think they won’t welcome me home.

A unique voice: why Sisters of Frida Matters

by Bethany Young 

Bethany is actively involved in with Third Sector organisations, promoting equality and advocating for disability rights. She is a SOF steering group member.

People often ask me why I joined Sisters of Frida. Why do you need it? In the past, I have asked the same question.. For years, I had soaked up the idea that my barriers came from having Cerebral Palsy. It was my job to overcome these. My experience of being both Disabled and a girl, then a woman, led to more isolation, and more hurdles that others didn’t see. If I could not clear them or ignore them myself I was a failure. It was all my fault.

Looking back, these beliefs I was taught about myself made no sense. I was putting loads of effort and skill into every area of my life – from employment and Independent Living to family relationships and managing my CP. Nothing changed, in fact the barriers got worse. After reaching out for help, I asked myself – maybe the problem isn’t me? I realised that so many of my experiences came from the strings attached to me. My CP is mine. My body and my mind are mine. These barriers are not. I felt relieved because my struggles made sense without shame or guilt. Everything I thought I knew about Disability shattered. Such a big realisation gave me a sense of hope and freedom, but also fear. I was starting again. Now I had asked the right questions, I needed answers.

I looked for mentors in the Disabled community to get peer support and find out more. I wanted an active community working for social change. Before long, I found Sisters of Frida – a disability organisation truly led by diverse Disabled women. Their inclusive vision and values, creativity and collaborative way of working all made me want to get involved.

Since joining Sisters of Frida, I have worked on lots of wonderful opportunities. I’ve written quotes for press releases, helped plan events, write reports and advocate for Independent Living. Planning for our future is exciting. We are unique because we recognise people don’t exist in clinical, clear-cut tick boxes. Real life diversity is social, human and multi-layered. This idea drives Sisters of Frida’s work and partnerships. We build relationships to connect with other women’s organisations. We bring our lived experience, and knowledge to new audiences. I have amplified the voices of diverse Disabled women on current struggles, like Social Care or Covid-19. Our perspectives don’t need to stay in an isolated bubble. Together, as Sisters of Frida, we spark better, bolder conversations to create change.

I am proud of all I have learned and achieved so far whilst working with everyone in Sisters of Frida. I am a better communicator, collaborator and activist. Working with these women shifted how I saw myself. I know my worth. I found my voice by listening to them. I found answers by learning from them. I am not alone, because together we are Sisters of Frida.

Sisters of Frida wish to offer our deepest condolences to everyone who knew and loved Nila Gupta, we know their loss will be heart felt. 

How do we even begin to tribute the vibrant and radical being of Nila, our friend? Nila was talented, radical, unique in their insight and was amazing at connecting with people. Nila was also a great activist and has been involved in many networks and projects, as well as the recent ones below. 

We can share some of Nila’s recent work in the disabled people’s movement, as Nila speaks best for themselves..

• An article by Nila on Disability Arts Online – Life Drawing and Body Work
• Video interview Sisters of Frida and Culture Access – Disability History Month: The intersection of being Disabled and a person of Colour

Part of Nila’s legacy will be that they co-founded Onyx, and we encourage other BiPOC disabled artists to get involved. 

We are saddened that Nila will no longer be able to join us in future projects, and Nila’s fire will burn on in our hearts and Nila’s legacies. 

Written by Dennis Queen for Sisters of Frida

***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. 

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.

This is part of the Sister Stories series.

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.

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.

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

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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.

There are vines in the living room

Tulips in the garden

Sunflowers in your brother’s room

And in your own room there is a knife

You use to carve out your art

Your brother’s name

Your deadliest pain

Your brother who cried with you when you went through your first heartbreak

And bought you flowers when you got accepted into art school

I promise I’ll always hold your hand my dear sister

I never want you believe you’re in a chokehold

I promise you your words reach outwards

I see greenery in your soul

Honest and raw

I guess you think your pain is all your own

You don’t know your pain is omnipresent

And then I see you

You pick up your knife again

And I stare agape.

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Aisha Malik is an emerging writer. Her poems have been featured in 3 Moon Publishing and Dream Walking. She hopes to publish a book one day.

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This is part of the Sister Stories series.