Disability, Dignity and the Myth of Independence

Stock image of the side of a door with keys inserted in the keyhole, primarily because it was the nicest thing that came up when i searched for "access".

I am well and truly fed up with people talking to me – or at me – about disability & independence.

You hear it in school. You hear it in college. You hear it in media about or relating to disability. Even the UK government calls the benefits it awards to disabled people “Personal Independence Payments”. And honestly? It gets on my tired, disabled nerves.

It gets on my nerves because very few people are truly independent. Have you ever ordered a pizza? You depended on somebody else to cook and deliver it. Have you ever made a phone call? You depended on the engineers who made that possible and on the person who sold you your phone. Even when people go off-grid, living self-sufficiently in reclaimed shipping containers, they’re often relying on the inventors and manufacturers of solar panels. I cannot think of a single person who is actually truly independent, because humans are social animals who are hardwired to rely on, and to help, other humans.

So why do I, as a disabled young adult, have to strive for some arbitrary level of independence that is vaguely defined and contrary to human nature?

People talk about independence like it should be the end goal for many folks with disabilities. The ideal disabled person, in society’s eyes, is one who can go places alone, do their grocery shopping on their own, complete household tasks unassisted and rely on nobody. Which is especially weird when you consider the number of adult men who have no clue how to do laundry or where to find vegetables in a supermarket, having sailed from life with parents to life with a partner who, if they’re female or assigned female, will do all of those things for them. In suggesting that disabled people should aim to – or want to – reach a level of independence whereby they don’t need to live with somebody or use the services of a carer, we’re holding disabled people to a higher standard than lazy men without disabilities.

Holding disabled people to high standards isn’t new, of course; one need only glance at the coverage of any Paralympics event to realise that disabled people are expected either to be groundbreakingly good at something or to melt into the background, meek and inoffensive. Expecting disabled people to be more independent than their abled peers isn’t outside of the norm, but it is damaging and hurtful to those of us who might never be able to live alone or who might always need to phone their mum before sending an email (which I definitely do). I’ve learned not to feel bad that I’ll never be a Paralympic athlete, or Rain Man, but I still feel bad that I’m not the wholly independent disabled person that I’m allegedly supposed to be.

I propose that we shift our focus away from independence, and instead look to a more subjective, holistic measure of quality of life for disabled people: dignity.

The wonderful thing about promoting dignity, rather than independence, is that its parameters change from person to person. For example: Alex, Bobby and Carly all have a disability that makes unlacing boots difficult for them. Alex feels undignified when xir partner unlaces xir boots for them, so xe spends the extra time practicing unlacing xir boots and mastering the use of a shoehorn to make the process easier. Bobby feels undignified when he’s bent over, struggling with his laces for fourteen full minutes, so he asks his friend to give him a hand. Carly, meanwhile, finds that both of those options undermine her personal sense of dignity, so she only buys and wears boots with elastic and no laces at all.

That last sentence is important – specifically, the part about Carly’s “personal sense of dignity”. We all experience dignity differently and can find different situations more or less dignified depending on our cultural backgrounds, personal hang-ups and many other factors. Independence is a rigid, standardised goal that looks similar for everybody who strives for it, but dignity is a personal, flexible goal that is achievable for everyone.

Some people probably wouldn’t feel dignified rocking backwards and forwards in a shopping centre, humming to themselves – but that, for me, feels more dignified than staying home, and certainly more dignified than a full-scale meltdown in a public place. The beauty of it is that I get to decide what makes me feel comfortable and act accordingly, without worrying that I’m not “independent” enough, and also without any external pressure to eventually “progress” to not using my tried-and-tested coping strategies, including reliance on my support network.

I don’t want to strive for independence. I’m a human, living in society, and I want to be able to lean on other people when I need to without guilt. I’m going to strive for dignity instead, however that looks for me.


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Why Do I Keep Finding Autistic People In My Kink Communities? (For #AutismAcceptance Month)

Gummi bears lined up in a grid. Most of them are clear, but the one in the centre is red, like an autistic person in the midst of neurotypical people

Now, this might just be a Me Thing™, but I find that autistic people are disproportionately easy to find in kink settings.

Conservative estimates suggest that 1 in 100 people in the UK are autistic. Even if there were 100 people at every munch, social or class I’ve ever been to, and even if I was, miraculously, extroverted enough to talk to every single one of them, statistically speaking I should’ve been the only autistic person in the room. I have found, however, that this is rarely the case.

If you, like me, are wondering why autistic people seem over-represented in kink settings, read on; I have some theories.


1. A lot of kinks involve sensory-seeking behaviours.

Obviously I can’t speak for every single autistic kinkster out there, but one of the things I enjoy the most about practising kink is the sensory component of it. The way that rope smells, the rhythm of a beating, the secure hug of being strapped to something – all of these things are sensory experiences. And in kink, we’re not just pursuing sensory experiences covertly, like when I’m in a busy shopping centre and I discretely tap my fingertips against my thumbs to attempt to self-regulate. In kink, we’re supposed to wholly lean into the sensory experiences we’re creating.

Additionally, dungeons and the like are more or less designed to make it so that you can focus entirely on the sensory experience at hand. They often have some areas for louder play and some quieter ones, and there won’t be any overwhelming distractions like a TV playing or people bumping into you. A well-designed dungeon is a safe sensory haven for the autistic kinkster.

2. Everyone in kink communicates more explicitly.

In vanilla life, communication with others can sometimes feel like an uphill battle. People use sarcasm and euphemism, they hedge their statements, and sometimes they say things they straight up don’t mean. (I still struggle to understand that the question, “How are you?” is not a request for information about how I actually am, but rather a relationship-building pleasantry that requires me to say something banal that’s easy to respond to.)

In kink, however, people are somewhat more forthcoming. Plenty of kinksters have Yes/No/Maybe lists that make their preferences clear, and there’s generally a heightened degree of openness in settings where anal fisting and inverted suspensions are being discussed. A culture of consent means that people feel more comfortable saying what they actually mean.

(However, I do feel the need to point out to some of my fellow autistic kinksters that people in kink settings aren’t always 100% forthcoming. Sometimes, when people feel uncomfortable saying, “No, thank you” to a proposition – because you are or are read as a man, because they’ve been harassed before, or simply because they want to be polite and avoid hurting your feelings – they will often use a ‘soft no’ instead. A soft no is something like, “Maybe another time,” or, “I’m not really sure.” It can be tempting to follow that up by asking when they would like to play with you or otherwise pressing them about it, but generally, a soft no won’t turn into a firm yes. It’s always better to say, “Okay, thank you anyway!” and then, if they actually are interested in playing with you “another time”, they can come and seek you out.)

3. Kink is outside of the mainstream, so autistic people feel right at home.

Plenty of people in kink settings have experience of being belittled, mocked or shunned for things they do in their personal lives – and even when they don’t, they’re aware that it’s a possibility. So it follows that plenty of people in kink are empathetic to people who, for reasons relating to neurodivergence, have also never felt too comfortable in mainstream society.

This is not to say that neurotypical kinksters face discrimination and oppression on the same level as neurodiverse folks, but they certainly know more about how it feels to be rejected by mainstream culture than vanilla neurotypical people do. Moreover, there’s a pretty high correlation between people who practice BDSM and people who identify as LGBTQ+, and those people are even more likely to understand what it’s like to exist outside of societal norms and to have to fight for one’s own human rights. This helps kinky spaces to be welcoming and accommodating to neurodiverse people and helps those people feel safer and more able to be their authentic selves.


If you’re autistic and you’re not sure whether you’d be welcome in your local kink scene, I hope this post has reassured you somewhat. Not only will you have built-in conversation topics available to you, since kinksters all have at least one thing in common (kinkiness!), but you’ll probably find your local munch or dungeon to be a welcoming environment where everyone is a little (or a lot) ‘odd’ by mainstream standards. I think it’s pretty likely that you’ll fit right in.

What Autistic Meltdowns Look Like In Adults (For #AutismAcceptance Month)

A stock photo depicting two wooden artists' mannequins on a chess board, one seated and one standing. The mannequin who is standing has its hands on its head in dismay and the chess pieces are scattered haphazardly around them both, representing autistic meltdowns in an adult. The background is black, like my soul after dealing with neurotypical douchebags.

Content note: since this post is about autistic meltdowns in adults, it’ll go into detail about how I experience meltdowns, and briefly reference self-harm.


The shopping centre is too busy. Too noisy. The lights are painfully bright. Every smell is violently nauseating. I try to push through; I have things to buy.

Two shops into my three-shop plan, I am disoriented. I’m in Clinton’s for a card, I know that, but everything is an assault to my senses. The cards are indistinguishable from one another. I am losing the ability to read. This sounds hyperbolic but it isn’t. I can recognise individual letters and, with a great deal of effort, entire words, but not phrases. Contextualising the words on the cards is near to impossible.

My breaths are short and sharp and I feel like not enough air is reaching my lungs but I don’t know how to rectify that. My joint pain, usually distracting but bearable, is now so close to the front of my mind that I could cry with it. I feel like I can feel every stitch of my clothing, scratching my skin, rubbing it raw. Simultaneously, I can’t quite feel any of my extremities – a combination of dissociation, and the very last of my proprioception abandoning me. My feet are too heavy and they thud clumsily underneath me as I stumble around the shop, unsure whether to ask for help or walk out but unable to soldier on like this. I know people are generally unfamiliar with autistic meltdowns in adults, so I know they all just think I’m weird.

I identify the shop’s exit. Leaving the shop means re-entering the shopping centre, which is busier. It takes several long moments to remind myself of the route out of the shopping centre and into fresh air. I sway on the spot in Clinton’s, vaguely aware that I look as crazy as I feel. I stare at the exit.

I leave the shop without buying anything but my chest and throat tighten as I enter the mass of people navigating the main body of the shopping centre, all desperate to reach their destinations. People brush past me and the sensory input makes me want to scream; I can’t discern whether that’s because it’s painful or because I simply cannot process anything any more. I make a series of guttural noises in the back of my mouth, a combination of humming and grunting, as I walk towards the exit onto the pavement outside. I don’t know it, but I’m weaving, unable to walk in a straight line. My vision is a tunnel but still a bright, ugly one. People’s faces are menacing blobs – if my own mother were to approach me now, I wouldn’t recognise her, and I would probably shriek at her proximity to me. (Fortunately, she is an entire county over and at home, so this will not happen.)

It’s only when I make it outside that I realise quite why my eyes were stinging – tears. I draw a deep, shaky breath and pull my phone out. By the time my partner answers my call, I am already sobbing.


Meltdowns related to Autism Spectrum Disorders (ASDs) look different in everybody, and autistic meltdowns in adults look different than those in children. For me, they are additionally complicated by my other mental health problems (namely: depression, anxiety, PTSD, borderline personality traits and as-yet-undiagnosed paranoia). But it’s impossible to separate the symptoms out from one another, by halves because of my own alexithymia and because of the frequent co-morbidity of autism with other mental health issues. To an extent, it doesn’t matter: a meltdown I’m having which features anxiety symptoms is still an autistic meltdown, because I am autistic and because I would be able to manage my anxiety more effectively if not for my ASD.


I am curled up in a ball on my partner’s sofa, my head on his knee. My eyes are so tightly shut that later I will complain of muscle fatigue in my forehead.

After every breath I draw in, I scream.

I wail at various pitches and volumes for what seems like hours. A steady stream of snot coats both my face and my partner’s jeans. He knows better than to touch me unless I directly ask him to, but he tells me, again and again, “It’s okay. You can make as much noise as you like. I’m right here. You’re safe.”

I don’t feel safe or unsafe. I just feel overwhelmed. So indescribably overwhelmed that the only way I can release any of it is to scream, and scream, and scream.

I don’t have these screaming meltdowns often. I suppress them in favour of other, less obnoxious coping strategies, like excessive stimming (in the best case) or self harm (in the worst). But I have gone too long without any form of self-regulation and I feel like I could break in two. So I scream.

Eventually, I run out of screams. I revert to vocalising in the back of my throat with my mouth shut. My partner keeps kitchen roll by the sofa in part for these occasions; ordinary toilet roll won’t do the job. I scrub as much of my face dry as I can and pull myself into a sitting position, still humming.

He makes the same suggestion he made half an hour ago: “Do you think you could take a promethazine?”

Promethazine hydrochloride (brand name: Phenergan) is an antihistamine that has a sedative effect. My doctor prescribed them on a PRN basis once she realised that handing diazepam (brand name: Valium) to someone with a history of substance misuse was a spectacularly bad idea, but getting me to take them is a struggle every single time. When I’m sufficiently overwhelmed, I become paranoid. When I’m sufficiently paranoid, I think medications with sedative effects are poisoning me slowly and that everyone who suggests I use them wants me dead.

But now I have no energy left to be paranoid. My throat and face hurt and tiredness cuts straight down to my bones. I nod, and my partner springs out of his seat to find a little blue tablet for me to take. He is gracious enough not to mention the huge patch of my snot that darkens his jeans.


When people tell me that I “don’t look autistic”, I have to restrain myself from slapping them. The truth is that whenever I “don’t look autistic”, I am living on borrowed time. I am suppressing stims, carefully regulating the volume of my voice, calculating the appropriate length of time to make or fake eye contact, and fending off countless sensory inputs imperceptible, insignificant and occasionally even pleasant to the neurotypicals around me.

I expend a great deal of energy to look just not-autistic enough to get through my day without being harassed, belittled or made fun of, and then I spend evenings hurting myself or screaming. I live in a prison of sensory overload and lack of self-regulation for the comfort of, and to avoid bother from, neurotypicals. And then they have the fucking gall to tell me I “don’t look autistic” as though they’re telling me I “don’t look ugly”, as though it’s a compliment.

I don’t look autistic because looking autistic, in this world, is less safe than looking neurotypical, blending in, and then melting down in private. This is why autistic meltdowns in adults aren’t represented all that often: they’re hidden from view.

But you can bet your ass I look autistic when I rock back and forth in my seat, sobbing and unable to verbalise to my partner that I need to blow my nose but have forgotten how, waiting for my promethazine to kick in.

And he thinks I’m cute as hell.