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 âfakingâ and âhas a friend who is writing an article about it.â
The âproofâ 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 canât always, but when we can, we post about it online because this is the life we want people to see us living. Because we canât 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 âgood daysâ 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 canât leave my bed, so Iâll have something to talk about while Iâm 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 peopleâs 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 friendsâ cars. When you take it into a mechanic, itâs never just the brake pads that need replacing, itâs always the discs. The mechanic seems
a little baffled by your old-new car. Theyâre still happy to charge you, though.
You canât afford a new car, and you canât 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 donât 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 youâre a little baffled because you know how it runs, but they donât, 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 donât 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 donât have a choice. You get the worst of it fixed. And still, it rattles and shakes and the driverâs side doors wonât lock and sometimes it breaks down for no reason.
Now imagine you can never get out of the car.
There is never a reason to interrogate a stranger about their disability.
Rachel Sharp is an author, activist, and lifetime member of the Somewhat Eccentric Persons Club.
She lives with chronic illness, plays ukulele, and tries to save the planet
This is part of the Sister Stories series.
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 â
âHey look, Dodo* has put her hair like that
and it looks like itâs in a plat, and because
itâsâŠwhite, she looks like Elsaâ.
Iâm happy then, delighted to be like
their favourite Disney character;
itâs the best compliment Iâve had
since depigmentation began.
Like the Snow Queen herself,
in her spectacular ice palace,
a resplendent arctic blonde â different,
but shimmering and lovely.
Iâll take that and treasure it:
Iâm like Elsa.
*Dodo â a colloquial Welsh word meaning âauntyâ.
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.
Theyâre always at it, everywhere â
fiddling with keys, crunching
crisp packets, and rolling tissues
between their fingers â and I canât stand
these sounds, so slight to the normal ear,
but horrendously thunderous
in my own personal hell.
And theyâre opening and closing their pens too,
thumbs moving, in and out,
over and over, click, click, click, ARGH!
Itâs a cruel irony isnât it? Losing functional hearing,
but developing unreasonable sensitivity
to every murmur and whisper, disturbing even
the all-encompassing silence â 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 â
and I canât differentiate between them.
Hyperacusis is a hell â one I can never escape from.
*This poem was originally published in Welsh as âHunllef Hyperacusisâ (Hyperacusis nightmare) in the literary magazine âBarddasâ. 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 âSynfyfyrion llenyddolâ (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, GĆ”yl 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 GlyndĆ”r University and lives in Ness, on the Wirral peninsula with her husband Peter and their pet tortoise, Kahless.
This is part of the Sister Stories series.
My experience as a patient has rocked my sense of self to the core, and one of my core values – regard for my profession as a Psychologist. Experience as a patient has extended and deepened anything I learned about psychotherapy and psychology, in training and at universities. My predominant experience of living in my body in recent years has been about pain management (and lack of) and debilitating bone deep exhaustion, to the point my brain no longer works â 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 Iâve been reflecting on.
What I now recognise as the harmful psychiatric perspective of ME/CFS that had sifted through into society â of âtype A personalitiesâ and over achievers, adopting a âsick roleâ â is a poor and damaging explanation of what is – in reality, a complex multi-system neurological condition that we just donât 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 canât place their origin (in my life experience) but I now spot where they came from. This has been crucial â the ânamingâ 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 â it is essential that practitioners hold open the possibility of society structures and narratives as being untrue, that they donât know any more or any better than the person in front of them, and that the patientâs 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 â in finances and housing, healthcare access and treatment â 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 â racism, sexism, ableism, are all impacting on the air we breathe â if this isnât 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 naĂŻve that was â 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 â 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 â 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 âlived experienceâ for years â because they are beautiful books, not always directly about their âlived experienceâ 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 Iâd make, I was fascinated with people and their lives and the difficulties they encountered. I enjoyed finding Cognitive Analytic Therapy (CAT â 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 â 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 hadnât 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 â 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 âbetterâ 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 â through books and art and language. Psychology helps me understand â my professional life is my route, I hope, to reconnecting with others who are now in positions of responsibility for other peopleâs care, for whom their narratives are powerful.
What I wasnât 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 Sontagâs âland of the sickâ is a normal part of life. That it is barricaded with âdo not enterâ and âhazard warningâ signs does nothing to ease the pain of those who arrive, often unceremoniously. And, perhaps, as healthcare professionals, we uphold a fallacy that we hold the keys. If we were better prepared, if society was structured around this expectation and acceptance, the world would be a very different place.
Louise Kenward is a Psychologist, Cognitive Analytic Therapy Practitioner and Supervisor. Drawing on this background, along with her work as a Writer and Artist, she has set up Zebra Psych. This new project aims to raise awareness and understanding of energy limiting chronic illness.
@ZebraPsych (Twitter & instagram) www.zebrapsych.wordpress.com
This is part of the Sister Stories series.
I’m hungry but I don’t want food. I’ve picked my favourite thing and it tastes bad. You’ve just asked me what I want and I’ve stared at you saying nothing for an awkwardly long time. Someone’s having a party and I’m looking at the menu online before I say yes, Iâll 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 canât. 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 âfussyâ and âstubbornâ; 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 âWhy? 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?â
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 donât 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 âF*** youâ 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 âI feel a bit faintâ 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 âI don’t want to but don’t want to disappoint youâ or âGive me time, I’m trying to figure out if I’ll like thatâ or âYes, but not todayâ 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 âYou want some?â only once and listen to and respect my answer, and don’t ask âAre you sure? No? Really? What about some of this? Or this? Or this?â 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 arenât 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 âmoreâ and âbetterâ.
– 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 ânopeâ, 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 donât 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 âweirdâ and âpickyâ and âboringâ 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 âunmet access needsâ and I swear I nearly hugged my laptop.
From a contributor who prefers to remain anonymous
Flying high with my flock
It came as such a shock
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
looming above my bed
Poised and in position
with a blanket made of lead
One wrong move and they descend
locking into place â
to render me immobile
with pain etched on my face
One on my diaphragm
Two on my thighs
Two on my shoulders
Two on my eyes
Paula is the author of the graphic memoir The Facts of Life (Myriad, 2017) and three childrenâs 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
This is part of the Sister Stories series.
There are vines in the living room
Tulips in the garden
Sunflowers in your brotherâs room
And in your own room there is a knife
You use to carve out your art
Your brotherâs 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 youâre 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 donât know your pain is omnipresent
And then I see you
You pick up your knife again
And I stare agape.
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.
This is part of the Sister Stories series.
Queer Theory has provided a really useful lens for examining the marginalising effects of existing in ways that deviate from societal norms. As a Queer Crip I found that it not only helped me find new ways to understand my sexuality and gender, but that it helped me think differently about how disablement impacted my life, both personally and systemically. I started noticing that the boundaries between my experience as a queer person and a disabled person were blurry to say the least; sure homophobia feels different to disablism, but the root cause, that deviation from what our society expects a person to be (non-disabled, straight, cisgendered, often white & male too), was the same.
Itâs one of the reasons I feel so hurt by the amount of casual and systemic disablism I experience from the LGBTIQ+ community. One of the ways that this community has learned to validate itself is to set itself in opposition to disability; âIâm not crazy, itâs who I am!â, âIâm not deluded, this is my genderâ, âI donât have a mental health conditionâ said with a sneer, âIâm normal, not broken like themâ, âMy needs require radical social solutions. Disabled people just need fixingâ. The often visceral rejection of disability, of other people with bodies and minds, feelings & desires that either function or are structured in a way that doesnât meet societal norms, seems strange at best, and cruel at worst. Itâs especially hard when you are a disabled queer, expected to denigrate part of your being (being a disabled person) to validate another (being queer).
Before we dive in, I should say that yes, I am well aware that these issues are just expressions of disablism in the wider world, none are completely exclusive to the LGBTIQ+ community (heck, I could write the same about some neurodivergent activists that wish to no longer be seen as disabled because they arenât broken us crips). LGBTIQ+ spaces are one of the few places I feel like I can be my queer self, and therefore I have a massively vested interest in wanting to do my bit to challenge the way casual and systemic disablism is an accepted part of the way we fight for LGBTIQ+ liberation.
A Quick History
Why is it like this? Well a lot of it has to do with the history of campaigning around queer issues. Iâm going to have to do this in a nutshell, because queer history is as vast a topic as the history of humanity. Historically homosexuality was seen as being intrinsically linked with sin; the church condemned such âsodomitesâ as immoral and unnatural. You see similar in the history of disablism with the notion that we were cursed, possessed, or otherwise deviant beings, suffering in some way for moral failings. Then came the move to understand and naturalise homosexuality, by suggesting it is a biological reality. We were âborn this wayâ, we canât help who we are, God made us this way. No longer is it the dominant narrative that sin is responsible, itâs now an âindividual tragedyâ of genetics. Of course, this led to LGBTIQ+ people being increasingly seen in a very similar way to how most see disabled people; as objects of pity that it is morally right for a compassionate society to âfixâ. Like it or not, itâs for their own good. Homosexuality & being transgender became psychological & physiological impairments, and intersex bodies became âchoicesâ for parents. Medical attempts at conversion and treatment began, rather than allowing for queer liberation. This had very real, very harmful implications. A friend reminded me that an example of this was clearly seen during the AIDS crisis, when a lot of funding was seen going to organisations that wanted to âcureâ homosexuality instead of the disease. From the start of the process of medicalisation, demands grew for society to be the thing that changed, accepting the community, rather than converting the individual. Some groups under the umbrella achieved âofficialâ demedicalisation faster than others; homosexuality was removed from the DSM in 1973, while the World Medical Organisation (WHO) waited until 1990 to remove it from the ICD. The WHO only removed âTransexualismâ from the ICD in 2018, and gender dysphoria is still a DSM classification while writing this in 2020.
Because these fights for demedicalisation are very recent (and in the case of things like the gender dysphoria in DSM, and the forced assignment of binary genders to intersex children are still ongoing), the language of those campaigns is still firmly embedded in the community. Given how many still see queer bodies as inherently immoral, it should come as no surprise, given the history, that there remain people who think queer folks have a âtreatableâ disease no matter what the WHO might say. The issue is not that we LGBTIQ+ people want social support and acceptance and an end to unnecessary and harmful medical interventions, it is that a lot of the language used to argue for this is disablist, and reinforces disablist narratives.
Iâm going to look at two of those narratives in a bit more detail now.
Medical Conditions are insults
âBeing gay isnât like being mad, being gay is normal because it doesnât hurt anyoneâ
This feels very obvious to me, but I feel I should start with the most basic point: There will never be liberation for the LGBTIQ+ community while its disabled members are still oppressed. Its disabled members will continue to be oppressed while anyone in society, including LGBTIQ+ people, denigrate disabled people because they are still pathologised and medicalised. As a mad crippled queer, the knowledge that many of my queer sibs see the idea of being compared to me as some dire insult is at once infuriating and deeply upsetting. Especially coming from a community that was once seen as being like me until society changed its mind. Instead of showing solidarity with those of us still left behind, contempt is shown instead.
To reinforce the idea that there are âacceptableâ bodies and minds is not helpful to either community. It is crucial to challenge the norms which say some bodies/minds arenât acceptable. The LGBTIQ+ community is still actively trying to challenge this with regards to LGBTIQ+ people, but will keep being held back while it still reinforces this norm by affirming that there are people (some of whom are queer themselves) that should still be deemed unworthy of acceptance. As long as there are socially acceptable ways of calling the functioning of some bodies and minds âwrongâ, the LGBTIQ+ community will always be skating on thin ice with regards to their own liberation.
Reinforcing these ideas is a harmful thing.
Social models for us, not you
âWeâre not crazy or sick, LGBTIQ+ need social support & acceptance, not to be medically labeledâ
Here we look at the notion that LGBTIQ+ marginalisation comes from society not accepting them and making it hard to get things like the appropriate medical support they need, while disabled peopleâs marginalisation stems from their inherent wrongness.
There is a pervasive notion that, while LGBTIQ+ people wonât be truly liberated until there is wholesale social change so people can accept and affirm the nigh infinite ways an individualâs gender, attraction, and sexuality present (or donât), disabled people just need âfixingâ. This simplistic approach does no one any favours. Of course there are disabled people out there that would like relief from undesirable impairment symptoms (pain, fatigue, frightening visions, high stress etcâŠ), but even if you magically got rid of those, the majority of us would still be seen as impaired. People would still develop impairments and become disabled. We would still require aids and adaptations and access to medical care (which is a social issue in and of itself). The negative stereotypes about disability would still exist. We would still be marginalised, weâd just be in less pain while it happened. Much like LGBTIQ+ people, us crips also need widespread social change to be liberated. I get very frustrated listening to LGBTIQ+ people try to argue that their marginalisation comes from society not accepting them and making it hard to get things like the medical support they need, while disabled peopleâs marginalisation stems from their inherent wrongness. Disabled people that need medical interventions to help manage impairments are apparent proof of this, while LGBTIQ+ folks that need them to help live their lives are somehow different. Iâve tried to pick into the reasons that one should be considered impaired and the other not; that one should be considered disabled and the other not; and I draw a blank. I struggle to see how the LGBTIQ+ community can suggest that there is a need for a social model of difference/queerness/impairment for a dysphoric trans person undergoing a medical transition to manage a body that causes a degree of emotional/physical suffering & additional marginalisation, but not for a disabled person taking medication, or having prosthesis fit to manage a body that causes a degree of emotional/physical suffering & additional marginalisation. Where is the difference? What answers are there that donât drip with disablist tropes where we are broken, subhuman, suffering, wrong, unnatural, dull & ugly? If you have one Iâd like to know because this genuinely gets to me as a queer (and genderqueer) crip.
In saying all this I want to stress that I do not seek to undo the progress of the Trans community by pointing out the similarities in aspects of our struggles. More I seek to point out that there isnât a distinct line that can be drawn between our struggles. Iâm not trying to deny transphobia and homophobia existing, or argue that they should be re-medicalised. I am suggesting that LGBTIQ+ and disabled peoplesâ transgression of societal norms around mental & bodily structure/function/feelings/desire are very similar, and both require those norms to be thoroughly challenged. That disabled people also require social interventions, especially when they have had any medical interventions they personally want to have to help manage/alleviate any symptoms they might find undesirable, and are now simply trying to live their lives as disabled people.
I want to leave this piece by talking a bit about some of the core disablism that is reproduced by talking about disabled people and queer liberation like this.
- That disabled LGBTIQ+ people arenât a part/ arenât an important part of the LGBTIQ+ community.
- That to exist with an impairment, as a disabled person, is so widely understood to be a negative thing that to suggest it to someone is to insult them.
- Disabled Peopleâs bodies/minds are in some way unnatural and abnormal, even though impairments are extremely common, often part of evolution, something that generally develops in us all as we age and so on.
- To be disabled is to be an aberration that needs either correcting through doctors or spiritual interventions, or if that fails, some sort of tragedy that dooms the individual to the lowest class of existence. Immediately othering and marginalising disabled people.
- To no longer be seen as a disabled person, to no longer be seen as impaired, to be seen as ânormalâ is a goal that should be held by all people that are classified as having impairments.
disabled people can be liberated by medicine making them ânormalâ
(where normal is the current capitalist construction of how an ideal
worker/commodityâs body should be structured, think and function) or as
close to ânormalâ as possible. Something queer theory explicitly argues
- That this should go beyond helping those who wish to alleviate pain or other individually undesirable symptoms of their impairment, and that medical interventions to make them ânormalâ should be imposed on all.
- This never mentions how the people that canât be medically ânormalisedâ enough to fit within societyâs norms then canât be liberated, leaving them as a perpetual underclass.
Iâve not dedicated any space to talking about disablism in the form of frequently inaccessible spaces, and the additional pressures in many parts of the community to conform to specific bodily standards that are unattainable for many disabled people. This is in part because I think they are a symptom of underlying disablism and living in a neoliberal society. Itâs also in part because this post has gotten long and I think itâs time to stop
To try and summarise all of this, I believe that disablism is still rife in LGBTIQ+ spaces & communities. I think one of the ways we can help combat this is to challenge the idea that there is a clear and distinct boundary between disablist oppression and homophobia & transphobia. There is at least a partial overlap because of a common root; both groups are seen to deviate from societal norms around bodily form and function, and expression of thoughts and feelings. As a result both groups experience moral & spiritual judgement for their difference, both experience a conflict between wanting access to any chosen medical interventions and not wanting to have medical interventions forced upon them, both want social change and to challenge norms, both have to deal with difficult stereotypes about their sexuality and attraction. Another way is to ensure that compassion, respect and solidarity arealso built where differences lie. We are stronger together, compassion is punk AF and smashing social norms is revolutionary
West Midlands, UK
A queer crip navigating the world
Many thanks for sharing this piece with us, friend who wishes to remain anonymous. First published onÂ Letter to Gender Critical Activists
Thereâs something I have been pondering, since reading this blog, on Letters:
Mainly Iâm pondering the question, how cleverly it wasnât directly answered, and why.
Itâs occurred to me that many people may not realise that many transgender children are not socialised in the exact same way as our non transgender peers. Therefore to assume we were raised the same way as people assigned the same sex as us, is a mistake. As the above article says, beautifully, we *fail* the gendered socialisation.
I cannot speak for anyone else, especially not transgender women. I can say that, anecdotally, my experience seems not that dissimilar to others in terms of the fact that our childhood socialisation is often different to that of our non transgender peers and siblings.
I am not an academic, so this will not be a peer reviewed piece linking evidence. This is a personal anecdote about my experience. No doubt there are proper evidential things within the plethora of gender studies work.
I do not usually discuss my personal life, hence choosing a faceless blog.
Content note for short references to sexualisation and to parental bullying and violence.
As soon as I realised sex existed and gendered ways of doing things, it was clear to me I was a wrong girl.
It was clear because my mother made it very clear that I kept doing it wrong.
Toys are not gender, but pay attention to the behaviour.
The first Christmas I remember, I wanted a football. I was nearly 4. We didnât own one.
Instead I got a kitchen unit and a tea set. I think a lot of parents arenât so gendered about toys now, and thatâs great. Girls can play with anything.
My mum explained that Santa brought it, because Iâm a little girl, my
brother is a little boy. So, it was obvious to me that Santa didnât
realise Iâm a wrong girlâŠ That secretly Iâm a boy and nobody has
Itâs the first time I remember thinking it, as I donât remember it starting. I remember because I thought Santa knew, as he even knows things our parents donât. I felt surprised, and a bit sad.
I tried so hard that day to be a good girl, I made so much water tea until they made me stop and told me off. I got the message that I still wasnt getting it right. I felt so anxious and guilty, as I dont want them to know Iâm not a girl.
After this, I start trying to pretend to be a girl. When I can remember.
I get told off, and sometimes hit, for a number of gendered misbehaviours not excluding sitting wrong, standing wrong, being to brash, being too loud, talking too much, being too intelligent, not having enough common sense, asking too many questions, being too opinionated, walking wrong, falling over too much, getting too dirty, playing with nature, playing marbles, climbing trees, damaging my clothes, not playing with girls, the list is endless and many of you can list it yourselves.
Did you think, gosh being a girl is pants? Did you think, is a boy being better? Did you think, this is just how it is for girls? Did you ever wonder what being a boy is like? What did you think, as Iâm sure I donât know. Please reply if you like :-).
I just kept thinking, âIâm not a girl and Iâm in deep shit when they realiseâ. I feared being thrown away, as they were clearly angry enough at me, just for being a âwrong girlâ.
I started to fear puberty. I was convinced that one day I would begin to grow a beard that wouldnât stop and I didnât know how to get a razor because I was only 6. Then they would all know.
Maybe some girls do think this, Iâd love to know.
Then I had a little sister and she was perfect. A âreal girlâ. Soon she was a great comparison for our mum.
When you keep getting your gendered behaviour wrong, the training
gets more often and tougher. They try to hyper gender you, or give up,
or a bit of both.
My little sister got it right from the beginning somehow, and I wondered about it. How did she know?
Any butches (butch women and trans butches) reading will no doubt be familiar with âhaving to wear a dressâ for family / special event / function / school / etc, and I share that horrible experience.
At the same time, sometimes I wanted beautiful sparkly clothes and things, but I would be told I canât have them, because I would just spoil them. I climbed a tree once in my favourite dress, I got in a lot of trouble. I secretly kept it, and still own it. Canât win for losing.
Proper girls like my sister have those nice things, but not me.
My interest in all kinds of clothes remains
As you get older, if you are still getting your gendered behaviour wrong, it can get worse.
I have a much hated photograph of myself at 12 years old, still actually trying to âbe a girlâ so hard that I look ridiculous. I still feel humiliated, just seeing it.
Some of us trans folk may be pushed towards early sexualisation, with whoever people think our âcorrectâ sex, or gender is. I wonât discuss that here, as the consequences are well known to feminism, and extend to most transgender people too (of all backgrounds). In our case just add in a little âItâs to straighten you outâ. Like other LGBTQ+ people.
By the time I realised I wasnât going to grow into a man, I was just in time to dread my actual puberty â and hate that with all the passion of many other transgender people (also well well documented, not going into that here). I seem to have similar dysmorphic view of my body as many other trans folk, although I donât want to change it. I have a whole different body in my head, so I donât care.
Around then, puberty, I remember just wanting to tell people to call me âA personâ. Wanting all of sex and gender just to leave me the hell alone.
And there I stay.
All of the common ground above we have, but one thing is very different, surely.
I did not experience sex and gender socialisation as a girl. As soon as I was given it, I knew it wasnât mine. I experienced it knowing I wasnât a girl. Right from go. Or rather â believing I was other, wrong, and very confused about it all.
I didnât experience my childhood gender training as a girl. I experienced it as other. Instead of thinking why are girls treated this way, I thought, âI shouldnât be treated this way because Iâm not a girl.â
This means our experiences will differ in important ways. Especially around my ability to understand womenâs issues.
I cannot tell you all the differences, only you can tell me, in a way, but maybe if we talk together kindly in a space without judgement, we can find out.
And while weâre doing so, we could consider whether itâs at all fair to assume that any transgender people are raised like other same-sex children, or gender socialised like other children, and especially whether we experience it the same way non transgender people do.
I think this is the basis of many wrong assumptions, which make it hard to even ask the right questions about what is going wrong between us.
Content note: explicit sexual content
The Space Between
Leave it in the space
between daydream and
wet dream, in those mornings
when I wake up in pain,
fall asleep in pain,
and the only comfort
is a hand rocking my clit.
I whimper out in orgasm,
feel the pain slip away
even if it always returns.
Not just the stiff, burning
electric-shock pain of a
chronic pain condemnation
but the loneliness creeping in.
the inadequacy. The longing
to be touched and the
resistance. The fear.
I am still a virgin,
Dreaming virgin dreams,
calling out the names of
old loves, faces eroded
by a frazzled memory.
I imagine you on top of
me, I mime it
with my legs spread
wait for you to fill me up.
To kiss me as you fuck me.
The first time will be
overwhelming or it will
be disappointing. I am
afraid it will hurt.
I am afraid I will be
thrown back to some
past violence, afraid I
will crawl away in fear.
Most of all, I will be afraid
to look into your eyes
where you might see me
vulnerable for the first time.
So itâs easier to imagine
it rough, where I tell you
to spank me, pull my hair,
bite my shoulder or
twist my nipple.
Itâs easier to imagine
scenarios of polyamory,
of having my face sat on,
of being hidden.
For all my teasing, all my
jokes and desperation,
all I really want is you
inside me, above me,
holding me, pulling me in.
telling me Iâm the one.
Not any other girl or boy,
who I might imagine
joining us in bed
to escape the heartbreak
Youâll slot yourself inside me,
smile and say,
âI love you.
I want to fuck you because
I love you.
I donât want you to hurt
Becoming someoneâs pet
I read an article
where a woman
spent seven hours
Afterward, she drove
home, took a bath
and, with a glorious
the chronic pain
in her legs and back
had vanished. It wasnât
the pills and their
it wasnât physio and
it wasnât CBT.
It was pain. The delights in
being punished had reset
her brain, knocked her
nervous system back
Iâve been thinking
about that a lot
myself. Those secret fantasies
I dare not commit to paper
when I play with
my nipples, late at night.
I wonder if it would work.
I take so many vitamins and
antidepressants. I deep freeze
my legs, drink three cups
of coffee a day,
bathe in Epsom salt baths
just to function.
My subconscious strays
into the realms of bondage,
of spankings and teasing and
âOpen your legs!â
Could I train my body
to see the pleasure in pain?
Could I take the sting out
of its persistence?
Would it let me stand
on my own legs for
more than ten minutes
without them buckling
Or would it be a placebo?
Would pain overwhelm me?
Would I become its
Master, in the same way
Iâd turn my body over to
another, allow them to tie me
down, blind me and make me
My legs are useless now,
why not string them up?
Why not kiss my thighs
plunge yourself inside,
while Iâm crying and cumming,
and call me a good girl?
If the pain outlasts the session â
will you make me yours?
Sarah Loverock is a writer, poet, and MA Creative Writing student. She has been previously published in Streetcake, ang(st) zine, Perhappened and Pussy Magic. She loves all things witchy and spiritual, history and mythology, and cute animals. She is available on Twitter @asoftblueending.
This is part of the Sister Stories series.
Alex had never liked crowds. This probably stemmed back to being briefly separated from their mother during the Christmas rush as young child. They had been jostled by a throng of passers-by, unable to see through the densely packed crowd, who barely seemed to notice the child they were shoving past. For a brief moment Alex wondered with utter horror if they had become invisible, but then mum had appeared with her arms open and calling their name, cutting through the people like Moses through the Red Sea. It would appear that in the twenty years gone by nothing much had changed, except for the fact that this time Alex was alone.
Alex gripped the joystick and gently maneuvered themselves into the stream of pedestrians making their way towards the train station on the way to work. Their perspective from the wheelchair wasnât that much different from that of a young child; Alex still had to duck out of the way of bags and cigarettes, dodge the self-righteous business moguls who only ever seemed to travel at hyper-caffeinated speeds, and the view was rarely something to write home about. Fortunately, Alex knew the route well, including where to dodge pot holes and jutted paving slabs, and managed to avoid getting caught in a rut, which would not only have been painful, but would have also resulted in âhelpfulâ saints coming to their rescue (and inadvertently making things worse).
The crowd slowed as Alex approached the train station, which bottle-necked the throng of people all moving in one direction, and they had to pull the joystick back rapidly to avoid giving the man in front of them sore ankles. A rucksack swung through their field of vision, and Alex felt the breeze as it sped by, close to their face. If the owner noticed, there was certainly no apology.
Alex drifted to the edge of the crowd, digging their tickets out of their bag with their left hand while steering with their right. They were well-practiced at undoing and redoing the zip one-handed while on the move. A man in high-vis was arguing about something with a member of staff, and his bike was blocking the only gate wide enough to accommodate a wheelchair. When Alex politely asked them to let her past, they were met with grumbles advising them to be patient, and Alex had to bite their tongue not to retaliate that their boss probably wouldnât like them being late into the office either.
Alex parked themselves in the usual spot on the platform and switched off their wheelchair, to prevent someone accidentally knocking it, or even âplayingâ with it while they waited for the train. A few minutes later it pulled into the station, and of course the attendant who should have provided the ramp was nowhere in sight. By the time the ramp arrived, the train was packed tighter than a tin of sardines, and Alex was told that they would just have to be patient and wait for the next train. This was precisely the reason Alex always left far more time on her commute than necessary; this was hardly an exceptional circumstance. As the train Alex should have been on pulled away, it, of course, began to rain.
The rain quickly became torrential and was pouring off of Alexâs hair in streams that soaked their back. Water dripped over their face making it hard to breathe properly, and their trousers were plastered to their legs. By the time the next train arrived, Alex was soaked to the skin.
Fortunately, this time the attendant was already waiting with the ramp and Alex was one of the first to enter the train. They gently kicked someoneâs bags out of the lone wheelchair spot and reversed in, ignoring the discontent grumbles as whoever owned the bag was forced to use the luggage rack instead.
As they started moving, the packed carriage was already becoming warm and humid as rain-soaked passengers began to dry off. Alex had a few stops before their destination, so dug their phone out of their bag, plugged in headphones, and began scrolling. A few minutes in there was a muffled noise.
âUm, emscoose me, ey, ello.â
Alex looked up and begrudgingly removed an ear piece as a stranger leant uncomfortably close to them.
âHi, I think itâs very brave getting on a train in your condition. Donât you need someone to look after you?â
âIâm fine, thanks,â Alex managed sharply before starting to re-insert their earphone.
âNo need to be rude, just looking out for vulnerable members of our society.â
Alex turned the volume up.
Eventually the train began to slow down for what would be Alexâs stop, and they had to loudly and clearly announce their presence as they inched forward, people stumbling clumsily into the way in their panic at seeing someone disabled using a train.
The doors slid open and a ramp appeared almost immediately, much to Alexâs relief. Once it was securely in place commuters immediately began to barge past, grumbling at how difficult it was to walk down the steep ramp, or quite literally just stepping over it as they moved down the platform. Eventually there was a brief window of opportunity, and Alex managed to make it down onto the platform without breaking any ankles, however much they would have liked that.
They thanked the attendant and started making their way towards the single gate they could use, ticket in hand. This time it was a suitcase blocking the access, but this time Alex didnât ask, and just shoved the case to one side. The station clock, when it became visible to them through the masses, showed that they would only just make it to the office on time. They pressed the joystick forward, and darted out into the city.
Emma is a gender-fluid bisexual who just so happens to use a powered wheelchair, and lives in Leeds, England with their husband. They work as a data handler in medical research, and outside of work like to play video games and attend local wrestling shows. They are the author of Diary of
Disabled Person (diaryofadisabledperson.blog), an award-winning blog documenting their life with Myalgic Encephalomyelitis and endometriosis. You can follow them @diaryofadisabledperson on Facebook and Instagram, and @WheelsofSteer on their very sweary Twitter.
This is part of the Sister Stories series.