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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Pride: A Complicated Experience

Stock photo of glitter laid out in stripes to form a rainbow. Glitter is present at a lot of Pride events, in case you didn't know ;)

I haven’t been to a tonne of Pride events.

I came out to myself as bi when I was about 13, and as nonbinary when I was about 17. Unusually, I think, I didn’t feel any internalised shame about my queer identity in the traditional sense. When I realised I was bisexual, I was excited about it: excited about my newfound connection to the LGBTQ+ community, excited about the possibility of kissing girls and excited that I’d found a label that fit me, after a year or two of worrying that I was simply a lesbian who was very bad at lesbianing.

When I came out to myself as nonbinary, I felt a degree of anxiety that I wasn’t not-cis enough (I didn’t experience all the dysphoria that mainstream media promised me, and I’d only put the pieces together as a young adult), but mostly I was, again, excited to find a word that fit my experience of gender. I understood, in theory, that a lot of people needed the Pride movement to allay their feelings of internalised shame, fear and grossness about being anything other than cishet, but whether it was the autism or my mum’s accepting and loving influence, I never felt bad about being queer.

This didn’t mean that I was uninterested in Pride events, but I didn’t feel any desperate pull towards them. I could experience the joy of being part of the LGBTQ+ community online, in the comfort of my own home, and that felt like enough for me. The first time I went to Pride, it was for an unconventional reason: I was deeply, deeply depressed, and it was a reason to leave the house.

My hometown’s Pride event was, and still is, mercifully grassroots in nature, held in a spacious park and never too crowded. But this didn’t stop me from feeling overwhelmed, especially when I found that there was nowhere for me to sit down and rest my disabled little legs, and nothing was signposted, leading to me getting turned around and confused at least twice an hour. I loved spotting other people’s flags, starting conversations with people about their dogs or their outfits, and talking to the people who ran stalls relevant to my interests, but I left the event exhausted and overstimulated and had to spend at least a couple of days in bed or otherwise in my pajamas, recharging my limited energy.

Bigger Pride events, as you can imagine, intimidate me. I went to one in my university city and found it so challenging that I slipped away on more than one occasion to the outskirts of the event, taking deep breaths and chewing on free sweets obtained from various stalls and booths. I know lots of other people find Pride inaccessible, and this year, I stuck to my hometown’s event – but still needed to be babysat by my girlfriends and metamour, reminded to eat, and encouraged to leave earlier than most people might because I was ready to lie down on the grass and give up.

This is why I feel conflicted about Pride. I already felt like it might not be for me, since I didn’t experience the internalised shame that so many LGBTQ+ people talked about, and after having found so many Pride events to be lacking in the accessibility department, I felt that even more strongly. Couple that with a police presence which makes my autistic nerves run higher than the volume on the main stage’s speakers and the ongoing online discussions about who “belongs” at Pride, I’ve often wondered what Pride does have to offer me.

The thing is, Pride as a concept is great. I enjoy rainbow paraphernalia and I even enjoy watching corporations desperately try to cater to me (only to drop the facade on the 1st of July) and then watching other LGBTQ+ people mock them for it. Pride month is fun, it reminds me of the importance of community and visibility, and it gives me an excuse to respond melodramatically to every minor inconvenience (“It’s raining? During this, Pride Month?”). But I’m starting to acknowledge that I pressure myself into attending events that I don’t really need to be at. I already know my community exists, I have created safe spaces of my own to be queer in, and I don’t feel gross or ashamed or anything other than pleased about my queer identity.

I know Pride does a lot for a lot of people. I love seeing people at Pride events blossoming with confidence they might not feel anywhere else, and I appreciate that there exists a space where everyone can just… be their authentic selves, without fear of repercussion. But with gatekeeping, corporate involvement, inaccessibility and the rest of it, it’s a movement and a series of events that I feel somewhat disconnected from.

I will continue to defend my LGBTQ+ siblings’ right to attend Pride events, obviously. I want to speak up in defense of asexual and aromantic people’s place at Pride and about the ways that a police presence can make POC and neurodivergent people feel deeply uncomfortable, but I might not need to push myself into events to achieve that. I suppose it’s a result of internalised ableism, something I do experience a lot of, that I feel like I need to do what my abled friends are doing whether I actually want to or not. And I suppose it’s important for me as an activist to confront my internalised ableism, and that might mean staying home from crowded, noisy, police-infested Pride events when I need to.

I’m still going to buy shit with rainbows on it, though. I’m always going to buy shit with rainbows on.

Eroticon 2019: How Accessible Was It?

Image is of Morgan, a blue-haired nonbinary human with facial piercings, smirking and holding their Eroticon delegate badge up to the camera. The badge reads "Eroticon, Morgan Peschek, @KinkyAutistic, Pronouns: They/them, Delegate".

(To those of you who follow me on Twitter and are bloody sick of hearing me talking about Eroticon, worry not! This is the last blog post I’ll put up that directly relates to it. Next week will be a continuation of last month’s stalkery Smut Saturdays story, and after that I have posts about why there are so many autistic people doing kink, how I feel about receiving cunnilingus and plenty more in the pipeline!)


It’s been just shy of a week since Eroticon 2019 came to an end, and I have to say: I loved it.

For those not in the know, Eroticon is an annual conference held in London all about sex, sex writing, sex blogging and sexy, sexy search engine optimisation. This was my first year attending (and was, in fact, my first experience attending any kind of conference) and I was anxious about every element of it, but I particularly wanted to discuss its accessibility since my whole Thing™ is about being simultaneously slutty and disabled.

I’ll start with the good things, and then mention areas for improvement, but I want to stress that Eroticon was an unbelievably positive and welcoming environment and that I could sense the whole time how much thought and care was poured into its planning and into making it as accessible as humanly possible. I already have plans to attend again next year and I’m even toying with the idea of pitching a session, so you can rest assured that even the things that were less than ideal weren’t nearly enough to ruin the fantastic experience I had. I’m also only going to talk about the accessibility of the conference itself, not the Friday night Meet And Greet or the Saturday night social, because those were hosted in a Holiday Inn entirely beyond the control of the organisers and because this post is running at too many words already.

The Good:

  1. Whilst trying to assuage my ever-growing anxiety about the fact that I was going to fucking London for a fucking conference, I spent hours studying the Eroticon website and was pleasantly surprised to find both a floor plan and a virtual tour of the building in which it was taking place. This is, as far as I’m concerned, an accessibility feature – being able to visualise a space before I have to navigate it in the flesh realm is anxiety-reducing and makes it marginally less likely that I’ll get lost. (I did get lost, but that wasn’t for a lack of signage in the building – I just get overwhelmed easily and forget how to read sometimes.)
  2. The aforementioned building, Arlington House, features a step-free entrance and both lifts and stair lifts to make all the rooms stairlessly accessible. I was thankfully having a good weekend in terms of my joint pain and stability, but knowing that I could have foregone the stairs if I’d needed to was a huge comfort.
  3. This only tenuously fits under the heading of “accessibility”, but the toilets were all gender-neutral, including the larger, wheelchair-accessible one. I suppose this is only an accessibility feature if you, like me, have debilitating anxiety that is worsened by dysphoria, but then again, all accessibility features are designed to accommodate specific needs that not every disabled person will have.
  4. The lunch options available were, as far as I could gather, brilliant for anybody with particular dietary needs – food that had to be allergen-free was stored separately from food that didn’t, and there was the opportunity to request vegetarian and vegan options and other such specialist things. Unfortunately, there was no “I am a fussy bitch baby” option, so the only things I could face eating were the fruit and the cake, but I can’t fault anybody for that – I have such particular, limited tastes in food that I wasn’t expecting to find much I’d like. I can heartily recommend the red velvet cupcakes, though.
  5. There was a room labelled the “Silent Sanctuary” where people who were overwhelmed, needed to rest, etc. could go to lie or sit down, and it even featured the thoughtful touch of colouring books. As I’ll go into below, it wasn’t perfect, but it was an enormous relief to slip into when I was finding myself somewhat burnt out and in need of some quiet crocheting time.

The Bad:

  1. Like most of the things I’m about to list, this was beyond the control of the Eroticon organisers, but it’s still worth mentioning for future attendees: the Silent Sanctuary was not silent. All of its occupants, when I visited, were exceptionally quiet and respectful, but its doors opened right onto the vendor area, so even when they were shut, a continual murmur of noise leaked through – and whenever anybody opened them, it was like being right back in that busy corridor. I appreciate that it was probably a priority to keep the Silent Sanctuary close to the busy vendor area precisely so that overwhelmed people like me could access it easily, and I’m not sure how anybody could have soundproofed it, but it’s worth bearing in mind so if you’re the noise-sensitive type you can consider bringing earplugs or ear defenders.
  2. The vendor area itself was the only place I ever visited where seating wasn’t readily available. I don’t know how they might have crammed seating in there for attendees, as it was situated in a corridor that saw heavy footfall most of the time, but my knees, hips and ankles were not best pleased about the fact that I had to stand for the entire duration of my (genuinely fascinating) discussions with various vendors. I can only suggest knowing your limits and maybe popping an ibuprofen before visiting the vendor area; the breakout space and all the talks had chairs available, so you could always duck out and plant yourself on one of those, but if you wanted to hang out with vendors and learn about exciting new products, it was standing room only.
  3. Again, I can’t blame the Eroticon organisers for this, but there were a lot of scents making appearances over the weekend. I’m not sure whether it was the rooms themselves that were scented with some kind of air freshener or whether attendees were wearing scents, but as a hypersensitive autistic baby, I found myself suffering bouts of nausea as well as more frequent overwhelm as a result of scents seemingly coming from all directions. I’m hesitant to suggest a no-scent or low-scent policy for next year because I don’t want to be entitled and demanding, but some people have migraines and other physiological conditions that are triggered by scents and others, like me, find them overwhelming even in small doses.
  4. I fully understand that hosting Eroticon in Camden makes it accessible to a lot of people who are arriving by public transit, and I also understand that finding an accessible venue that will host sex-related events is an unimaginable ballache. However, Camden is on the cusp of being financially inaccessible: even if you receive one of the tickets funded by sponsors, finding affordable accommodation and food in Camden is a whole task in and of itself, and if you choose to stay in an area of London outside of Camden you have to account for the price of public transport to get over to Arlington House. Again, I have no suggestions for where to host Eroticon instead, especially since Arlington House are an excellent organisation doing excellent work, but I have to mention financial accessibility, especially since us disableds are some of the people most likely to experience financial difficulties.

The Overview:

I had a brilliant time at Eroticon. I really, really did, and I cannot imagine a better first-conference experience than the one I had. The minor criticisms I have are all things that don’t fall directly at the feet of the Eroticon team and are near-impossible to remedy, but they’re things I wish I’d been aware of before I attended so I could make sure I had ibuprofen and earplugs – which is why I’ve mentioned them here! I’d love to meet even more members of this loving, supportive, truly incredible community, so I figured I could do my bit by equipping potential 2020 attendees with some knowledge that’ll make their Eroticon experience even better.