Disabled people have equal rights to participate fully in all aspects of life. However, we are often obstructed by lack of access, ignorance and poor attitudes. This isn’t simply an inconvenience for disabled people, it can be a matter of life or death.
Lack of access prevents us from having control over our lives and is a stark reminder to disabled people that our rights and our value as human beings can be so easily disregarded.
Accessible and inclusive environments for disabled people create a better experience for everyone. However, accessibility is rarely made standard unless non-disabled people recognise that it benefits them too – for example, dropped kerbs and step-free access that improves access for parents with prams, and the recent dramatic increase in subtitled videos online.
If disabled people are not expected and not thought about from the start, then the resulting design or format will exclude people who may wish to take part and have a right to do so.
Throughout the COVID 19 pandemic, disabled and non-disabled people alike, have increased their online communications, through a range of platforms. Accessible information and inclusive communication is important for everyone but it is especially vital for our independent living. It also makes it possible for us to chat, campaign and communicate with our peers, friends, family and colleagues, nationally and internationally.
Screenshot of an online meeting using Google Meet by International Network of Women with Disabilities with live captioning. Participants were from Mexico, Australia, USA and UK. Description: 5 women in an online platform, text from the close caption reads Tricia Malowney ” bit. We share the load a little bit and if we can just keep chipping away so we can convince the feminist movement. That we are part of their community. We are not an add-on that everything that they do..”
This document provides information on disabled people’s rights and the action you can take to create accessible and inclusive information and events online. This is not an exhaustive guide but we have tried to add resources from around the world. There are many online platforms for events and meetings and we have not covered all these but reference some throughout.
In this toolkit, we added the importance of realising our rights as well as following the Social Model of Disability with the accessibility aspects. We hope it will be useful and do drop us a line if other information or tips can be added at hello@sisofrida.org.
We thank London Community Foundation for the funding to make this possible. And Dr Natasha Hirst @HirstPhotos and Eleanor Lisney @e_lisney for researching and writing this toolkit.
Disabled women’s perspectives on Independent Living during the pandemic
6.30-8pm Friday 21st May 2021
We are pleased to announce the launch of our ground-breaking research into the long-term impacts of the COVID-19 pandemic on disabled women. Building on our briefing on disabled women and the pandemic, this research (funded by the Smallwood Trust and National Lottery Community Fund) will support us to create solutions and lobby for change. Through focus groups, it collects together a wide variety of intersectional disabled women’s experiences and concerns, most of which are made invisible in policy-making and society. The aim is to support us to make independent living a reality for everyone.
Come to our webinar where we will be discussing our findings with brilliant panellists : msunnia, Rachel O’Brien, Tumu Johnson, Dennis Queen and Martha Foulds. Dennis will also perform one of her songs for us.
Panelists
msunnia is a queer crip feminist, with a background in campaigns and organising. msunnia is also the co-organiser of Criposium, a symposium on disability and intersectionality.
Rachel O’Brien is a member of the Sisters of Frida steering group. Her day job is doing public affairs for a Disabled People’s Organisation and campaigning to improve the rights of Disabled people. She is also a workplace rep for Unite the Union.
Martha Foulds is a disability rights activist living in Sheffield. She is currently a university student and helps co-ordinate the Sheffield Transgender Solidarity Network.
Mx Dennis Queen is a queer, disabled musician based in Manchester. She has been involved in the disabled people’s movement for 20+ years campaigning, performing and volunteering at disabled people’s organisations. As well as being a panelist, Dennis will perform a piece for us.
Tumu Johnson is a mental health worker and group facilitator with experience of working in front line support services, research and community organising. She is currently studying for a Masters in Mental Health Studies whilst working in the NHS and also provides freelance training around mental health and wellbeing.
Tumu, from the Sisters of Frida’s Steering Group, will be chairing the webinar.
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.
Pilot project by Natasha Hirst and Eleanor Lisney .
***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.
Passive Power Description: Striking contrast of black and white picture of 6 seated women with white nurses’ caps and white uniforms , one in a darker uniform. There is one suited man seated with crossed arms. None of the faces are visible . The only colour is provided by the view from an open window displaying a vibrant sky with a twirl of colours.ICU description: Black background with a multitude of bright lights (space) with random 4 bigger white lights. A floating (female) face in shades of (milk chocolate) brown, a tube is attached to the nose. It falls down in a wide twist with 2 pennant like attached.Its a struggle sometime… description: Dark background with mauvish overtones in space, gets brighter under the curled up female form curled up with a red cloth with knees drawn up. She has a black vest and black undergarment. Her feet touch on seemingly, a blue gleaming crystal. Her head is on 2 red pillows.Mr Surgeon description: 3 figures in dark green surgical costumes. They are bending over, one with a scalpel in hand. Only the person in the middle has a face, the other 2 faces are integrated into the background – a dark mauvish space with small dots. A circle hangs like a light on the operating table but it has a white marble sheen with blood colour streaks. The person in the middle has the only face, bespectacled with a mask.Making space for trauma description: figure in a stretcher covered with white sheet, arms and face is hollowed out as space.. There are tubes attached and a breathing tube.
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
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
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.
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.
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.
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
