Feminist Aspie

Fine, Let’s Talk About The Autism Life Expectancy Study

(TRIGGER WARNING: This post is about the autism study that’s been all over the news this week, which means it discusses premature death, suicide, abuse, autism-cure-rhetoric and other aspects of systemic ableism)

For those of you who aren’t aware, a Swedish study has found that autistic people tend to die earlier than the general population. (I have several issues with the BBC article I’m linking to, but chose it because it includes lots of statistics and information) This is not a blog post I want to write. It’s not something I want to spend too long thinking about, and the same probably goes for most of you too. But I’ve ended up here anyway, partly because bottling things up isn’t particularly healthy and partly because I think there are things that need to be said.

I first saw this on a Facebook post with lots of comments, mostly from parents/relatives of autistic people, saying the link should not have been posted because it’s evidently upsetting and they thought we should be focusing on the positives. And yes, the post in question should have included trigger warnings from the start. But unfortunately, ~focusing on the positives~ won’t make the problem go away. Supporting autistic people, and disabled people in general, isn’t just about inspiration porn, it requires recognising that we face problems and a huge number of them are created by abled people. In particular, neurotypical people should be aware that most things written about autism in mainstream media can be that hurtful to us. Something to bear in mind.

Anyway, the study is important, but we should keep this in perspective – it’s one study. The reduced life expectancy is on average, not universal – on the one hand that means you shouldn’t just declare it a load of rubbish because you know someone who knows someone who’s autistic and in their nineties, but on the other hand it’s not guaranteed to apply personally to you or your loved ones. It should also be noted that autistic people who obtain an official diagnosis (and are therefore included in the statistics) are disproportionately those who are for whatever reason less likely to pass for neurotypical, and unfortunately, those people will also disproportionately bear the brunt of mistreatment and abuse of autistic people. Finally, be aware of biases in how the findings are framed in media reports – the new report (although not the study itself) is by Autistica, formerly known as “Autism Speaks in the UK” until it severed ties in 2010, and the autistic community have made their feelings on Autism Speaks and their pro-cure agenda very clear indeed.

According to this study, one of the main causes of the reduced life expectancy is epilepsy, which is often co-morbid with autism. I don’t have epilepsy and don’t want to speak for those who do, so at this point I’d like to direct you to a couple of articles by the wonderful Amy Sequenzia, who is also autistic and has epilepsy. As far as I can work out from what I’ve heard, and I may well be completely wrong, a cure for epilepsy is largely wanted by those who have it, which is not the case for autism – if that’s the case, why not direct research funds there instead of co-opting those deaths to frame autism as the tragedy?

Another big contributor to premature deaths in the autistic population is suicide. Amongst those autistic people who are not considered to be intellectually disabled, suicide was found to be the second biggest cause of death after heart disease; and whilst heart disease is a common cause of death more generally, I would not be surprised if the stress and anxiety of being made to fit into an ableist, neurotypical-centred world plays a factor in that too. I’ve also seen comments elsewhere making the very good point that it can often be difficult for autistic people to access healthcare generally – due to sensory issues making it difficult to know there’s something wrong, but also due to inaccessible communications and environments and being presumed incompetent once we are able to make a point – and this may also have negative consequences long-term. A lot of this boils down to being forced to act neurotypical at all costs, dealing with the sensory assaults of environments created by people who don’t acknowledge that we exist or that autism is something that affects us above and beyond how it affects neurotypical people who have to ~deal with us~, and being bullied and abused and outcast for who we are. And all of those things are preventable.

I’ll repeat that: A lot of this is preventable. Through acceptance, accommodations and services, without having to try and make us neurotypical when that isn’t possible, at least not if you want us to still be us.

Mostly, this has made me feel angry on a societal level (because this is even a thing, and because of the way it’s being framed in the autism-as-tragedy manner) rather than scared on a personal level (I can barely come to terms with my own adulthood, never mind my own mortality!) but having said that, the timing wasn’t necessarily brilliant for me, and I do spend probably far too much time worrying that all the worst-case scenarios – the high rates of employment, the high rates of social isolation, now this – might be inevitable. But I want to end on something hopeful. It’s likely that this news will be a wake-up call for many – for autistic people to practice self-care as best we can and seek help when it’s needed rather than suffering in silence, and for neurotypical people to actually provide that support or at least think about whether their attitudes and actions are considerate and/or damaging to the autistic people in their lives and in the wider world.

We can fight this. We can change this. The next generation of autistic people do not have to meet the same fates as the last.

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Think Before You Food-Police

(I’m really sorry that this is only my second post this year – I promise I haven’t abandoned the blog totally, just that I’m basically in finals mode now, so I don’t expect to get back to any sort of regular posting until summer. TRIGGER WARNING: This post discusses food, food-policing and disordered eating.)

Food is hard.

Considering that it’s literally necessary for survival, food is really, really hard. For many of us, for different reasons, in different ways. To top it off, food and diet seems to come with a particular stigma, with individual morality attached to it: the idea that if you don’t eat this, if you don’t cut out that, if you don’t have a perfectly balanced/perfectly ethical/perfectly “normal” diet, you’re a bad person. In that sort of atmosphere, we can’t talk about it – and if we can’t talk about it, we can’t ask for help or share advice about the subsection of these varied issues which can be resolved, so we’re less likely to ever be able to meet whichever standards are being asked of us. Food-policing helps no-one.

When people think of food-policing they tend to think of dieting, fatphobia, forcing people (especially, but not exclusively, women) into starving themselves to meet impossible beauty standards and so on; sadly, this remains a huge issue. But food-policing has many other faces. You may have noticed that I included “perfectly ethical” above, and – in the interests of honesty – this blog post is inspired by a thread in which people were claiming veganism is necessary for feminism and dismissing all the various obstacles to veganism that were brought up, so that’s the particular strand of “if you don’t do XYZ with your diet then you’re a bad person” I had in mind with this post. Having said that, cutting meat and/or animal products out of your diet is also subject to pretty relentless food-policing, whether by outright mockery or concern trolling and telling vegetarians/vegans that they can’t possibly be healthy when they know they are. People with certain food allergies or intolerances are routinely mocked for those too, even though they have absolutely zero choice in the matter.

So, before you judge, you may want to consider the following:

  • Class is a thing. Poverty is a thing. Not everyone can afford to implement whatever you’re advocating. If something has saved you money personally, that’s great, but options that are cheaper long-term often require higher costs initially, which can mean it’s not an option at all.
  • Whilst money has a big part to play itself, financial difficulty brings other difficulties too. After long working days, many don’t have the time or energy to cook in a certain way, or teach their children to do so. Poverty can also be linked to mental health problems, which make food harder in their own right.
  • Disability is a thing – or rather, it can be many things. Some people need to eat certain things. Some people cannot eat certain things – at least not without really messing up their health – and this often eliminates lots of food from the options pool from the start. Adding additional restrictions on top of that can be expensive at best and downright dangerous at worst.
  • It isn’t always just about the actual eating of the food – planning, buying, and preparing food requires spoons and energy and executive function and not everyone can take those things for granted. Personally, it’s this stage which is often the giant hurdle for me. At the moment I rely quite heavily on the fact that my university offers meals during the week, and things really went a bit pear-shaped for a while on my year abroad, which also scares me for the future. And again, the constant feeling of being judged that comes with food adds so much to that – the more I’m worrying about what other people in the kitchen will think if I make a “silly” mistake, the less likely I am to make it into the kitchen at all, which means I’m even less confident about it, and so on.
  • I feel like this shouldn’t need saying, but eating disorders are a thing, and constant bombardment with moral judgments about what you as an individual should and shouldn’t eat can be particularly damaging for those affected.
  • If you fit into one of the above categories and you’ve made it work (or know someone who is/has), that’s fantastic, but remember you (or they) are not everyone. Even the same disability can affect different people very differently – autism is just one example of that. My main issue here is executive function and anxiety as mentioned above; for others like me, the main issue here is sensory overload, with some tastes and textures being physically painful; for others still, the main issue might be diverging from a long-established, safe routine.
  • “I can’t” does not always mean “I can’t yet. For example, even if I did want to cure my autism (which I don’t) it wouldn’t be possible to do so. The idea that if we’re not where you want us to be with food then we’re just not there yet is incredibly damaging. As mentioned above, sometimes food-policing can start from a place of good, and of course increasing accessibility is generally better than assuming accessibility cannot be achieved (although it’s funny how this is only considered when accessibility means doing what abled people want), but no amount of shouting at people because something may be possible for them in future does anything to actually help them do it.
  • Any sort of rhetoric revolving around ” well, if you genuinely really can’t…” plays right into the hands of an overarching ableist society in which disabled people are constantly being told we’re not disabled enough for accomodations. Too often, nobody is considered genuine in this narrative. Given this context, I imagine very few disabled people would respond by thinking “Oh, that includes me” even if you intend to include them – it’s more likely that, like me, they’ll think “well maybe if I ~just tried harder~…”
  • Don’t assume what people are or are not dealing with. Evidently, there’s a huge stigma around food, and this means the people you’re stepping over are less likely to speak out about it at all, never mind openly identify as one of the people you’re stepping over. In the case of disability, not everyone with a relevant disability will even know they have it (for instance, autism is hugely underdiagnosed in adults, people of colour, and women).
  • Unless you’re a doctor, don’t assume you know what’s healthy for a person better than they do. Contrary to popular belief, weight isn’t always an accurate indicator of health at all. And yes, vegetarians/vegans who are able to access sufficient non-animal sources of nutrients can and do live healthy and active lives, sometimes more so than some omnivores. Mockery out of ~concern~ is still mockery.
  • “But some people do use their disability as an excuse-“ NOPE. Stop. This is often just another version of “just try harder” in practice. This isn’t just fun for us, and it definitely isn’t convenient to have to carefully navigate that thing that’s literally necessary to survive and face everyone else’s scrutiny on top of that. Stop.

Food is necessary. Yet, food is hard. Think before you make it harder.

6 Comments »

The Elephant In The Room: Emotional labour link round-up

Every time I come home from university and get properly re-acquainted with domestic family life again, I always end up wanting to blog about the same topic, yet I don’t think I’ve ever made it beyond a muddled outline in my drafts. It’s difficult to articulate without feeling like I’m making a fuss over nothing. It’s a big pattern of smaller things that, taken in isolation, seem barely worth mentioning. It’s definitely there, and it definitely scares me as a young autistic woman who only just about manages to look after myself without hitting total overload half the time, but I can never quite manage to convey it in words in a remotely satisfactory way.

Luckily, a load of other people already have. Over the past few weeks I’ve come across some really great pieces online about emotional labour, constantly left to women and constantly unnoticed and unappreciated, so I thought I’d share them here:

“Housework is not work. Sex work is not work. Emotional work is not work. Why? Because they don’t take effort? No, because women are supposed to provide them uncompensated, out of the goodness of our hearts.”

Do feel free to share further recommendations (and yes, that can totally include self-promotion) in the comments!

4 Comments »

The 3rd obligatory blogversary post!

My blogversary is 30th December, so these posts always end up basically being New Year posts. To that end, I’ve made my 2015 WordPress report public; you can see it here. The first thing I noticed about this is that recent posts have been few and far between! Final year of university is now officially a thing, and will become even more of a thing over the next six months, so I haven’t been able to post as much as I’d ideally like and I’ll probably disappear altogether as exams approach, but hopefully I’ll at least vaguely keep the blog ticking over for 2016.

I’ve noticed that as New Year approaches, a few people have linked back to some of the posts they’ve made over 2015, so in case anyone reading this happens to be really, really bored:

A huge huge huge thank you to everyone who’s read/liked/commented on/shared/etc my posts – this started out as me rambling into a digital void when I couldn’t face IRL confrontation, and the idea that other actual human beings pay attention to said rambling is still a very odd concept to me.

Happy New Year everyone!

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Three Day Quote Challenge – Day 3

(EDIT: This is my 100th post! That’s a bit weird to think about…)
(ANOTHER EDIT: A previous version of this post linked to You Are Not A Burden as republished on The Mighty; following recent concerns about this site I have found the same post on Lydia Brown’s own blog, Autistic Hoya, and changed my link accordingly.)

I made it! Three whole blog posts in three consecutive days! Hopefully I won’t disappear for months on end now… Anyway, this is the final post in the Three Day Quote Challenge as nominated by A Willful Woman. Here are the rules:

  • Thank the blogger who nominated you.
  • Publish a quote on 3 consecutive days on your blog. The quote can be one of your own, from a book, movie, or from anyone who inspires you.
  • Nominate 3 more bloggers each day to carry on this endeavour.

Today’s quote is from “You Are Not A Burden” by autistic activist Lydia Brown:

“Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another’s life a little bit better, another’s worries a little bit less daunting and frightening.

You don’t owe society anything else.”

I think that pretty much speaks for itself, really.

This is maybe cheating slightly, but in my last two posts I’ve simultaneously felt like I was struggling to think of possible willing participants to nominate and like I was probably missing a load of people out, so I’m going to open the challenge up to whoever’s reading this – if you want to have a go, have a go! Particularly recommended for anyone trying to restart a blog they’ve been massively neglecting because life got in the way… hopefully I’ll get a couple more posts in before next term, at least!

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Three Day Quote Challenge – Day 2

This is the second in a series of blogs I was nominated to carry out by A Willful Woman, and the rules are as follows:

  • Thank the blogger who nominated you.
  • Publish a quote on 3 consecutive days on your blog. The quote can be one of your own, from a book, movie, or from anyone who inspires you.
  • Nominate 3 more bloggers each day to carry on this endeavour.

This quote is from an article I read earlier this week, “Leveling both sides of the playing field” by Elaine Filadelfo:

“What if, instead of teaching women that they have to raise their hands to speak at meetings, we taught men to be more reflective and circumspect; instead of telling women to tamp down their emotions at the office, a man was told that he didn’t appear committed enough to the job because he’s never shed tears over it; instead of pushing women to take public credit for their work, we publicly admonish men who don’t properly acknowledge others’ contributions? I was just invited to a seminar on public speaking skills for women — where’s the class on listening skills for men?”

I’d really recommend reading the whole thing, which explores how and why the problem sexism in the workplace is often left for women to resolve; as well as ignoring the fact that when women do act more stereotypically “like men” they’re criticised and punished for it, this can also stray into blaming women for their own experiences of discrimination.

Today I’m nominating Spectrum Perspectives, ischemgeek and TARDISTIC. This challenge concludes tomorrow!

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Three Day Quote Challenge – Day 1

So I was nominated for this challenge by A Willful Woman what seems like billions of years ago now, and I’m only just getting round to doing it after a month and a half with no blog posts. Thank you for the nomination, and I’m really sorry for the delay – I’m officially a final-year law student now, so things have been pretty hectic recently and unfortunately I can’t be as glued to WordPress and Twitter as I’d like!

Anyway, the rules of the challenge are as follows:

  • Thank the blogger who nominated you.
  • Publish a quote on 3 consecutive days on your blog. The quote can be one of your own, from a book, movie, or from anyone who inspires you.
  • Nominate 3 more bloggers each day to carry on this endeavour.

After a little while trying to find the right super-inspirational quote to use, I’ve ended up deciding to start off with something funny instead… I suppose I’ve got two more days to make a serious point with, right? Anyway, this is from the weird and wonderful podcast Welcome to Night Vale, performed as a radio broadcast in a desert town where nothing is quite as it seems; more specifically it’s from the episode “Summer Reading Program”, and I’ve chosen it because it’s relevant to what has accidentally become a recurring theme on my blog…

“Some summer tips to beat the heat:

First off, have you tried to reason with the heat? Humans, temperatures, angels, and chairs are all equally real and sentient – which is to say that we’re all not real, nor are any of us actually sentient. But give reason a shot. It has never, not once in history worked, but it might just work this time!

If the heat won’t listen to reason, try denying that it’s hot. “Doesn’t seem hot today,” you might say to your profusely sweating neighbor. “A little chilly even,” you could continue, slipping on a sweater and making an exaggerated “brr!” noise as the glaring sun plants the idea of cancer in your skin.

And, if denial does not work, then your best bet – as with all problems in life – is exhausted resignation.

This has been summer tips to beat the heat.”

…Yeah, Night Vale is an unusual place. But this episode was part of the initial batch I listened to when I first got into the podcast during what was a pretty rocky time in my life, and this is still one of my favourite segments because turning something scary into something funny can often be really helpful, and also because it’s nice to be able to laugh at yourself sometimes!

Today I’m nominating Full Spectrum Mama, Alex Forshaw from Married With Asperger’s and HJ Street from Geeky Scribbles.

As stated above, this challenge goes on for three days, so I promise the gap between this post and the next won’t be quite as long this time!

 

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Autistics Speaking Day 2015: IRL

(As always, 1st November is Autistics Speaking Day – please do check out the other posts on the website!)

I haven’t been on here much recently; university is really hectic at the moment, and the time and energy that isn’t going into my studies is going into various other little side-quests. I don’t feel too disconnected though, because some of those side-quests are autism-related. Firstly, whilst I don’t want to go into details for anonymity reasons, I’ve recently embarked on a new project which involves writing about autism someplace else – publicly. It’s still online, and yet it feels more, y’know, IRL. It’s me, not just an alias I created specifically to express what I never felt I could around the people I care about, and it feels like a big step. The second thing I’ve been doing recently is starting, slowly and tentatively, to properly address some of the problems I’ve been having over the last couple of years and, I suppose, seek support through more formal channels. It sounds big and scary when I put it like that, but in reality it’s more like tiny baby steps that, taken individually, don’t seem worth worrying about.

I bring this up because I’m thinking about the year that’s passed since last year’s ASDay and realising that, in seemingly small and unconnected ways, I’m beginning to accept and embrace my autistic self not just in theory but in practice. The idea of learning now, as an adult, what sets me off and how to minimise the risk and how best to recover afterwards and how to explain all that to people seems like a bizarre concept, but it’s been happening to me for a while and it’s an ongoing process. For those of us who grew up believing that passing for neurotypical was the ultimate goal and that our differences were purely behavioural without considering sensory and other underlying differences in autism, it’s surprisingly common to have to re-learn how your brain wiring works and how to work with rather than against it. Some things that I thought were harmless need to be dealt with carefully or they can build up and lead to overload; on the other hand, some things that I thought were Very Very Bad can be mitigated and dealt with or even sometimes enjoyed, with some forward planning and supportive family and friends. My biggest challenge, as perhaps made evident by the whole “secret WordPress” thing, has been and is still opening up to people IRL (by the way, I include online communication with people I know in my definition of IRL, because why should that communication be less valid?) and again, the progress is slow, but steady, and perhaps increasing in pace. Even if the potential worst-case-scenarios never arise, I’ve found that just knowing there are people on side makes a world of difference.

What does this all mean? Well, in short, I’m one month into term and haven’t gone into shutdown yet (although who knows, maybe I’ve spoken too soon), I remain absolutely terrified of the future but I’m working towards making the future seem like an actual possible thing, and I’m feeling more like myself, like this version of me, in the big and scary realm of IRL.

Baby steps, as it turns out, can go a long way.

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10 Downsides Kids With Autism Get From Bullying (because apparently it isn’t obvious…)

Autism Daily Newscast has published an article by an ABA practitioner entitled “Ten Perks Kids With Autism Get From Bullying”. Yep, really. That’s a thing that now exists. (I won’t link, but I like Wandering Autistic’s “honest version” if you want a quick summary…) So, in the interests of balance, and because it apparently isn’t obvious, here are just some of the negative effects bullying has on autistic children:

  1. The physical and emotional abuse. Honestly, the list could just end here. No ~important skill~ or ~valuable life lesson~ is worth that. Ever.
  2. You learn, very quickly, not to trust anyone. If you are your honest self, they might turn against you. If they seem friendly, they might be using you or laughing at you behind your back.
  3. You get the impression that everyone hates you and/or thinks you’re whatever the bullies call you, it becomes so ingrained that those thoughts begin automatically wherever you are and whoever you’re with. In other words, the foundations of an anxiety disorder.
  4. The realisation that the adults who are supposed to help you just agree with the bullies, even if they use more technically-polite words to express it. Everyone seems to be taking the same victim-blaming stance – if you could just “act normal” you wouldn’t get bullied, and because you won’t or can’t, you must deserve it.
  5. Low self-esteem – because if everyone constantly tells you that your way of being is wrong, you start to believe it, and you start to believe that it’s your fault for being who you are.
  6. All of the above is likely to be detrimental to engaging in social activity and making friends in the future.
  7. The fact that we have to justify not being abused by saying it’s detrimental to social skills, because our social skills (often used just as shorthand for “passing for neurotypical”) are seen as more important than our humanity.
  8. Other people deciding that everything’s fine because they can use your pain for their ~inspiration~ or ~teamwork~ or ~awareness~.
  9. The frustration of adults telling you “we can’t stop bullies” when they’re not even trying; treating bullying as if it were a natural disaster they are powerless to stop, when in fact it’s a product of a society they created. Where do you think bullies learn their prejudices from?
  10. Knowing that the bullying of people like you never totally goes away even in the adult world. We just stop calling it bullying and refer to it as what it is – ableism.
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Don’t You Mean “Person With Ableist Derailing”?

Earlier today, I came across this great comic strip by Christine Deneweth about her experiences with schizophrenia and neurotypical privilege (link includes a transcript and image descriptions), in which she discusses the media’s damaging portrayal of schizophrenia, the pressure to “act neurotypical”, and the risk of workplace discrimination and even unfair incarceration faced by schizophrenic people. It’s really worth a read. Go on. I’ll wait.

After I read the comic strip, and because apparently I never ever learn my lesson, I read the comments on Everyday Feminism’s Facebook post promoting the piece – only to discover that most of the comments didn’t engage with the actual content at all, and instead criticised Deneweth’s use of the identity-first term “schizophrenic” (as opposed to person-first language e.g. “person with schizophrenia”). In other words, mostly neurotypical people telling the artist she’s somehow managing to stigmatise herself rather than thinking about the actual stigmatisation and ableism she’s described as coming from neurotypical people. Because obviously neurotypical people themselves are never the problem amirite?(/sarcasm) To be fair to Everyday Feminism, they responded to the worst offenders with this article by Caley and Creigh Farinas about the problems with policing disabled people’s identities (also really worth a read), but the fact that articles like this have to exist just goes to show that this same thing happens to disabled people talking about their experiences all – the – time.

Personally, I am autistic and I (like many others, although of course not everyone) prefer to use identity-first language to describe this fact. This is because I don’t think “autistic” is a bad thing; it’s not a negative quality, it’s a neutral quality. I feel that shoehorning in “person-with” where an adjective better suits the sentence sends the message that you can’t see “autistic” as a person without trying to separate the autism from the person, which isn’t possible; autism is a part of who I am, and I wouldn’t be the same person at all without it. Using identity-first language doesn’t mean I’m defining myself exclusively though autism – to give just one example, my gender doesn’t define me either but you don’t often come across the term “person with femaleness”! In my opinion, if neurotypical people are so keen on “putting the person first” then they need to demonstrate that in their actions, not just their words.

But my opinion doesn’t matter one iota here. The only person whose opinion matters is the person describing their own disability, and nobody has the right to police how someone identifies. It doesn’t matter if you’re some sort of professional expert on the relevant condition. It doesn’t matter if you know someone with the relevant condition (something that neurotypical people, apparently unable to imagine any of us having our own perspective, often equate to being that someone to claim authority). I don’t even think it matters that much if you share the relevant condition, although of course you remain free to use different language to describe yourself. You do not have the right to police how someone else describes themselves, especially regarding marginalised groups you don’t belong to.

The main reason this infuriates me so much has nothing to do with any of my concerns about person-first language itself. Instead, it’s because abled people seem to use this same-old-same-old argument to prevent meaningful conversation about disability and ableism, and to conveniently avoid engaging with the problems being highlighted (and, in turn, their possible roles in those problems).

Neurodivergent people are saying, over and over again, “we are being discriminated against, we are being portrayed unfairly and harmfully, we are not given adequate support and accommodations, we are mocked and bullied, we are excluded from the workplace and social spaces and other aspects of public life, we are sometimes incarcerated or abused or even killed just because our brains are wired differently to yours”.

But the only thing neurotypical people ever seem to take from that is “you’re the one oppressing yourself with your sentence structure”.

Telling someone how they should and shouldn’t describe their disability – especially at the expense of what they’re actually saying – is ableist. Or maybe it’s an action with ableism. Either way, it really needs to stop.

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