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and sharing through lived experiences

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Let me start by setting the scene: I’m using the curvature of the sofa arm to
rest across, the cushions are being pulverised into the crook of the chair as
my elbows press down, my hair is pulled back, and for a brief second, I no
longer remember which way is up. The lack of perspective adds layers of
pleasure and sweetness only misdirection can give. It is bliss. The bath I had earlier keeps my hips flexible to my partner and the painkillers prevent the pleasure subsiding into pain. All this in the name of sex. Brilliant, amazing sex with somebody I love.

In the background is a not so distant memory of a charity advert. At first
watch, it brought me tears. The message: arthritis has stolen intimacy from
someone you know. Originally, I couldn’t get my head around the idea of it.
Was it supposed to be saying I was too disabled to have sex? Or was it simply saying that sex wasn’t natural for somebody like me? I understand that everybody experiences arthritis differently. It’s the one thing I find most beautiful about living with a chronic illness within a disabled community. Every day comes with a multitude of differences, and no two are experienced the same. Diversity and adaptability are superpowers in the face of all the you can nots we are told.

So why did they see this advert as fitting? Intimacy is not a privilege reserved for some, nor is it stripped away completely by chronic illness. Sex is not a three-step recipe of getting it up, getting it in and getting it off. There are so many more nuances and experiences to be had in sex than just those three.
There is touch and sensitivity, blindfolds and descriptive play, toys and cotton buds. We have hoists that double up as swings, and hand grabbers that pinch. There is a realm of imaginative play that belongs to every one of us if we choose to express ourselves in that way.

The first time I saw this advert I was furious at the implications it made. The second time it came on I was prepared to prove it wrong. I’m not saying sex is the answer, but it sure as hell made me feel better. Collapsed on the sofa after recovering with my partner I realised something important: closeness isn’t defined by somebody else, nor a pity-seeking advert. It was the way we melted together, and how we laughed at the silliness of it all. It’s in the shared state of vulnerability and trust that makes it intimate, not in the way others seek pleasure. So, to my sisters out there, let me say this; when the world tells you that you are too different to be human, remember that sex is revolutionary. Be proud of who you are in all your difference because, in the face of ableism, orgasms are activism.

Heather Lyall
Heather Lyall

Heather splits her time writing YA novels and studying a BSc in Nursing at Canterbury Christ Church University. Diagnosed with Rheumatoid arthritis at the age of 13, writing has become a vital component of pain management
and expression in her life. Her debut novel, Murder the March Hare, will be published later on this year. Find her on twitter @HevJaneLyall or on
Instagram: heather_jane22

this is part of the Sister Stories series.

We’re excited to announce a call-out for the new Sisters of Frida blog series, and we need your help!

This ongoing blog project is for you and will be shaped by you, the Sisters of Frida community. It will be an online space to share your experiences, stories and creativity, and help us to create a digital sisterhood and archive of disabled women’s voices.


We want to showcase work by writers and artists living with chronic illness, mental illness, and disability. Your work doesn’t need to be about those experiences exclusively, but we welcome and encourage submissions along those lines.

We’re looking for contributions of things that inspire you, this can include non-fiction, fiction, poems, illustrations, photographs, essays, reviews, etc.

Here are some quotes we like:

“At the end of the day, we can endure much more than we think we can.” – Frida Kahlo

“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” – Audre Lorde

“Hard things are put in our way, not to stop us, but to call out our courage and strength.” – Unknown



If you’d like to contribute: 
  • Send all submissions with the subject SISTER STORIES: *TITLE OF PIECE* to [email protected]
  • Please include a short third-person bio and your pronouns, but if you’d like to remain anonymous, that’s fine! Just let us know. If you also want to include a brief background about the piece, please feel free to do so.
  • Attach submissions to your email in an accessible format.

  • Non-fiction, essays, reviews should be no longer than 1,000 words.
  • Poetry/Artwork – Please submit no more than 5 individual pieces.
  • Languages: We welcome submissions in any language but please provide a translation if possible.

The blog will be updated monthly, so expect a calendar’s worth of stories! The frequency may increase depending on the number of submissions.

If you have an idea but need a bit of direction, let us know! We can work through it together, and help to guide whatever it is you’re creating. Just email [email protected]

* Sisters of Frida is an inclusive safe space for all self-identifying and non-binary disabled women. We do not tolerate sexism, homophobia, racism, transphobia or other forms of discrimination based on sexuality, age, gender expression, religion, education or socio-economic status.

Jennifer Brough is the curator of this set of stories/blog.

youngish looking white woman with long hair smiling into the camera
Jennifer Brough @Jennifer_Brough

Jennifer is a writer and editor who lives with fibromyalgia and endometriosis. She is involved in projects at the Feminist Library and seeks to amplify the voices and experiences of self-identifying women.
She is learning Spanish and dreaming of visiting Frida’s house in Mexico, so is very happy to be part of the Sisters of Frida commu
nity.

We are starting on a new series of blogs from sisters on topics that focus on disabled women.

37 seconds: A review of the realest film you will see this year

This is a perspective instigated by the current (2020) Japanese film, 37 Seconds, written by a young disabled woman. She wishes to remain anonymous. F writes about similar parallels in her life as a young disabled woman.

This is a perspective instigated by the current (2020) Japanese film, 37 Seconds, written by a young disabled woman. She wishes to remain anonymous. F writes about similar parallels in her life as a young disabled woman.

In 37 Seconds, 23-year-old comic book artist Yuma, physically disabled due to profound cerebral palsy and emotionally stunted by her well-meaning but overly protective mother, forges her own unusual path to sexual awakening and independence while at the same time discovering love and forgiveness.
– from Rotten Tomatoes

from Berlinist Film Week 37 Seconds Description of Yuma, a wheelchair user with a pink dress and flower in her long hair, smiling at 2 people in sequinned dresses. they are on a street.

Warning: some nudity and sex scenes in the film

Netflix has a new hit film that it’s not even advertising. I’d ask them to, as it’s the film we all need right now.

37 seconds follows the journey of 23-year-old Yuma, a wheelchair user who has cerebral palsy, lives with her mother, and has a job as a manga artist. Recurring themes of rejection, stigma, control, and other ableist nonsense are explored and removed, leaving Yuma free to live her own life.

This offers a starting point for a conversation that hasn’t yet been had: To what extent do young disabled people feel safe? How can we do more to support them?

*** SPOILERS HERE ***

From the very beginning, we are shown exactly how much control over her own life Yuma is allowed to have, and how others do not see her for who she is.

Her mother treats her like a child, or less than a child. She shows little respect for physical boundaries or privacy, doesn’t let Yuma freely choose her clothes, and doesn’t show any interest in Yuma’s thoughts and feelings. Her boss casually steals some of Yuma’s pay and lies to her about it, and then carries on taking credit for her work.

Almost every scene adds another layer of defeat for Yuma. Seeking recognition for her talents, she sends some of her work to a publisher, who tells her it’s too similar to the work of her boss. Similar? It’s the same – the work he’s comparing it to is her own.

So she starts to push harder to find her own job where she will be respected. An editor of an adult magazine refuses to hire her until she has experience of what she’s drawing.

Online dating is the first step on the path to her new job, and a faulty lift leads her to new friends, new clothes, drunken partying and falling asleep in the car on the way home.

This is behaviour typical of a 20-something year old, and most parents would shrug, tut, and discuss safe behaviour choices.

Yuma’s mother is not most parents. She’s spent years protecting Yuma from everything, giving up her time to do the things that she’s certain Yuma can’t do without her (though she never gives Yuma the chance to try). Then suddenly, she finds everything: the practice sketches for the adult magazine, beautiful dresses, and a plastic penis.

Yuma arrives home very drunk, having refused her friend Toshi’s offer to make sure she gets home safely. She sneaks in, closing the door almost silently behind her, and quietly heads to her bedroom, where her mother sits waiting.

The second she refused Toshi’s accompanying her, I felt afraid for Yuma. Her mother’s level of control had been so high for so long, and yet futile. Yuma and her mother’s relationship had been set in stone, then shattered. Instead of waiting until the morning to talk it out, Yuma’s mother starts to shout. And then turns to physical violence. And then neglect. At every stage, Yuma is trying to assert the truth, and at every stage her mother rejects it.

The next morning, her mother has taken her phone, and places a lock on the door. She’s a prisoner in her own home, with no way to call out for help.

We don’t know how long this goes on for. The next scene is Yuma at a physiotherapy session. Asking to use the toilet, Yuma rushes out of the building and out of her mother’s control. It’s notable that Yuma didn’t feel that she could ask the physiotherapist for help.

She stays with Toshi. She quits her job. She meets her uncle for the first time, and then travels with Toshi to meet her twin sister she never knew existed. Her sister revealed that she’d always known about Yuma, and had been afraid to contact her because she’d been told she was disabled.

It’s not explained why their father left. But learning the whole truth – another layer of rejection – prompts Yuma’s self-acceptance at last. She feels glad that she was the second born twin, who didn’t breathe for 37 seconds. As I understand it, she feels it’s better to have been hurt by the actions of others than to have caused pain to others by your own actions.

It’s a cleverly written film. Viewers are given just enough of the other side to see that the social stigma surrounding Yuma’s sister was her only source of information, and that this had kept them apart. We saw that Yuma’s mother, who is never identified by name, had had a daughter taken from her, and the idea of Yuma being taken away by the world was too much.

But that doesn’t excuse her behaviour. Her pleas to the police officer to find her daughter who can’t yell for help sound hollow given her earlier choice to lock Yuma in the house alone.

Her mother chose to ignore that her daughter was an adult. She failed to support her to grow into the young adult she wanted to be. She failed to listen. She chose to react with violence. She chose to lock her in. That’s not OK. That’s very not OK!

What’s more not OK is that this film is only fictional in the specifics. The ingredients are factual.

I whispered “Go, go, go!” as Yuma left the physio clinic. But where was she going? Her Plan A had been to check into a hotel, and had she stuck with that plan, I’d have been worried what would happen when the money ran out. Instead, the perfect solution appeared: Toshi.

This is where the reality of the film breaks down for me. How many disabled teens and young adults know an accessible safe place away from their parents with someone who understands and respects them and has a wheelchair accessible vehicle to get them there? And who can accompany them to another country (somehow without her passport) just like that?

In the real world, that doesn’t happen. Someone in Yuma’s position would have very few options of where to go; very few options of how to get there; and have very few people who could be there during that time.

For young adults who do have support needs, it’s harder. Questions like: “Where would I go?” become “Who can I trust to move me, give me my meds, and assist me to get washed and dressed? How can I get my medical equipment?”

Yes, social services solve these problems every day. They meet these young people and do the best they can. And that’s fine, if you trust them. But when every doctor, nurse, social worker, OT, TA, teacher and other grown-up has treated you like a mascot, or pet, or simply not as a person, are you going to trust a stranger with your future? When you have a parent who keeps telling you that others are incompetent, and then the professionals reinforce that by failing to act professionally; are you going to trust them? When you’re told that many children with your condition are given up for adoption, and you’re lucky, and if you say the wrong thing you’ll be take away and put in The System; you’re going to feel ungrateful and ashamed.

Yes, I cried at 37 seconds, because I understood some of how Yuma felt. I remembered some of how Yuma felt. No, I don’t have a twin sister, or any skill at drawing. But I remember what it was like to live in a situation that made me feel very afraid; afraid to speak up, afraid to do anything that might be frowned upon, afraid to be anything other than what they wanted, which wasn’t who I was.

That was a long time ago now. I grew up, and I left home, and I started to find my own self. I discovered new talents. I discovered what music I really like. I discovered that actually people seem to like me. I discovered that if I speak to the right person at the right time in the right way, I will be listened to. I discovered it’s OK to not agree with people and to make up your own mind.

I forget these things sometimes, start to revert to old habits which protected me. Good friends remind me that I don’t need to do that anymore. They encourage me to be the me that I want to be, and nothing else. For the most part, they themselves have experienced rejection or control in one form or another – they understand things I’ve never told them.

I know so many Yumas. They’re easy to spot, if you know the signs.

People wearing clothes that don’t reflect their personality – bought and chosen by someone else.

People not asking or asking hesitantly for the things they need, even from paid PAs or Care Assistants – afraid of the consequences of being annoying or too much of a burden.

People who never have any money, but don’t know whether they’re accessing the right benefits – the paperwork is handled by someone who doesn’t involve them.

People dismissing their own medical issues as “It just does that”; “It’s because I didn’t try hard enough to… (reason that makes no sense)”; “I’m just getting lazy” – someone else has told them that a new symptom isn’t important, or is made up, or is somehow their fault.

People not sharing ideas or joining in with what’s going on around them and which interest them – waiting to be given permission.

People avoiding eye contact and not talking for themselves, and then suddenly saying a thousand words with a look when the person with them moves away for a moment – there’s something that they want to say, but can’t.

The solutions are simple. Support the kids, and support the parents. Let the kids have space to grow, and make friends, and join in with what’s fun for them. Let parents have space to be themselves outside of the parenting role. Give them the knowledge they need to understand how to support their kids to develop into adults. Give kids the knowledge to understand how other’s view of disability is not the only way, and to find their own way.

To anyone reading this right now who has lived or is living any part of Yuma’s story, I’d offer the following advice:

– Remember you are not them. Their actions do not make you a Bad Person. Your choices are your own.

– Not everyone is like that. There are some kind and friendly and fun and supportive people out there who can be trusted. There are some people who are the opposite. There are some who are middling. Go find the people who find the best in you.

– Find a way to organise your thoughts and express yourself. Art, dance, cookery, music, writing. Anything that gives you the chance to be you.

– You don’t have to do this alone. When you feel the time is right, seek support. Maybe from a friend or family member, maybe from an organisation, maybe from a professional; anyone who you feel comfortable with. Ask their support, tell them what you want to happen, and let them go with you as you navigate this, in your own way, in your own time.

– If you see someone who needs some support and you have the time, energy and knowledge, offer your support to them. Even if they say no, they’ll know someone’s there for them.

Yuma’s story is so many people’s story. But it doesn’t have to be.

We are starting on a new series of blogs from sisters on topics that focus on disabled women.

37 seconds: A review of the realest film you will see this year