For months it was cold and gloomy… – the time to cozy up under a warm blanket and your favourite sweater, with a hot cup of tea and a good book!
But… wait… why is reading so hard?
And why is this thick sweater making me feel like I’m suffocating?
Managing life as a disabled person (let alone being comfortable!) is hard enough as it is, even when you know your own needs and can accommodate them.
It gets significantly harder should accommodation not be possible, even if the only reason for that is not knowing your needs. Or worse: ignoring them!
So why do so many of us seem to feel the irresistible urge to make things even harder for ourselves?
I believe one of the reasons (possibly the largest, if not often only one), is internalised ableism.
(Speaking of disability – I’m repurposing some pictures because I haven’t been able to go outside and take new ones, and I refuse to write adhd-unfriendly walls of text that aren’t broken down with images XD)
What Is Internalised Ableism?
Shortly said:
Internalised ableism is, when a disabled person thinks badly about themselves being disabled, has unrealistic expectations for themselves and/or even feels shame about needing accommodations – often refusing them all together. This can go as far as the person constantly pushing themselves to the edge (or over), just because of this nagging feeling that they “should be able to”.
Internalized ableism is a phenomenon where disabled individuals absorb and enact negative beliefs and prejudiced values about disability that are prevalent in society. Internalized ableism is a form of discrimination against oneself and others with disabilities, rooted in the view that disability is a source of shame, should be concealed, or warrants refusal of support or accessibility.
[…] Ableism encompasses more than just ignorance around disability leading to negative attitudes towards disabled people; it also includes unrealistic ideals of perfection and ingrained beliefs about bodies, promoting the idea that disability is inherently negative or unwanted.
– Wikipedia
For me, internalised ableism meant denying myself the most basic accommodations – even when I was alone, and there should’ve been no one to judge me.
There always was judgement: I was judging.
So, I kept the font, icon, etc. sizes in my tech at a “normal” size, and ruined my back bending incredibly close to any screen.
I pretended to see when people showed me something on their phones, eventhough I barely did. (I cannot read off a phone I’m not holding myself! I just can’t focus my eyes on it! Luckily, people tend to explain everything anyways. Double luckily, because my monotropic brain can’t really read while someone speaks to me.)
I wore clothes that made me look “acceptable” (Jeans. Are. Awful!), despite the sensory overload of them significantly impacting my ability to bear the rest of the world, and refused to wear noise cancelling headphones in almost all public settings, because it might be seen as “socially inadequate”, “weird” or even “rude”.
I NEVER EVER asked for accommodation in any way.
And I still struggle greatly to do so, and don’t nearly do it often enough!
I whole heartedly believed (and still do to some extend, though at least now I’m aware it’s horrible and I need to unlearn those thought- and behaviour patterns), that if I’m not actively in pain – if I’m not pushing myself to utter physical and mental exhaustion – I’m not trying hard enough.
And to this day I find myself more often than not believing I’m “not disabled enough” to even feel disabled, let alone call myself that or ask for accommodation.
I’m constantly questioning myself, wether I’m valid in a struggle or just “too sensitive”, “entitled”, “lazy”, “not actually struggling”,…
Even now, that I have an officially recognised, severe disability, I’m utterly uncomfortable admitting to a struggle and question every single one on wether it’s an “okay one to have”.
To be fully honest; I feel like an imposter writing this post at all and I’m constantly stopping to second guess myself and consider wether or not I’m in a position where I even am “allowed” to write a post like this.
It took me four months from draft to publishing, because I kept questioning wether or not I’m allowed to write this and wether I have “valid” things to say about any of it.
The Time I Asked
There was one time – or rather one period of time – where I did ask for accommodation:(although be it without knowing that’s what it was)
I don’t like to think about my time in the hell we call “school” for various reasons.
The main reason being, that trying to navigate the school system with undiagnosed ADHD and medium to high support needs autism (in the country I live in, we’re not given a level of support needs, so I’m using these words in the literal sense, not the way they’re used based on the 3-level-system used in other countries), is like trying to navigate the ocean without a boat or knowing how to swim.
But the one time I asked for accommodation had nothing to do with that.
Instead, it had to do with my terrible vision.
A condition I’m to this day trying to get a suitable diagnosis for, since ever since I understood my life-long eye doctor’s medical gaslighting and incompetence as such (“just guess if you don’t want to try harder!”), I wasn’t able to see another one.
I always wore glasses.
Still, I really struggled to read what’s written on the chalkboard, projected via the classroom beamer – and don’t get me started on daylight projectors! (What a coincidence, that my worst subjects always were the ones with the teachers who liked to use daylight projectors [/s] ;-;)
But since other people around me, who wore glasses as well, didn’t complain about these issues, I thought for a major part of my life, that it’s one of the many things we all struggle with but no one talks about. (Which I believed there to be a lot of…)
I thought people just knew the full cards of cafes and restaurants that wrote them on large screens or banners behind the counter – that these banners are simply for advertisment and decoration, rather than displaying the menu.
After I realised people also seemed to know everything about places they’ve never been to before, I thought it might be a height issue, and once I’d be a grown up, I’d be tall enough too, to read what they seem to see.
I thought ice cream flavours and bakery goods were common knowledge – you identified them by colour and details and such, like foragers do with mushrooms and herbs in the wild, and that prices came as a surprise upon ordering – no wonder people complained about prices sometimes! Right?
I thought getting to choose your own drink is something for adults and that all children just get whatever someone decides to offer them, and that me slowly starting to memorise the available options per frequently visited location is just how you navigate them.
How everyone does it.
Only once my homework started to blatantly show my helpless guessing of words and how they’re written, as I couldn’t read what the teachers wrote on the chalkboards and had us copy into our workbooks, did my mother catch up on the fact, that even with the best vision they could possible give me with glasses, I wasn’t nearly up to standard. (And that they did, indeed, make me guess in vision tests till I got it right, then counted it as “she saw that just fine.”)
This wasn’t my only vision related issue in school, but I learned my lesson:
That my struggles are an annoyance and not to be taken seriously.
That I’m supposed to be fine
And that I should just be better.
So, I was told to ask to be sat in the front row of the classroom, from where I’d have an easier time reading what’s written on the chalkboard.
Oh, how much I wish they didn’t tell me to do that! >-<
Asking this simple question introduced me to my first ever experience with blatant, ignorant ableism.
(And how cruel people in a position of power can be)
Not only was I told that since I already have glasses, I shouldn’t have a problem because “glasses correct your bad vision” (which obviously made the issue disappear [/s]), but I was – more often than not – not only denied a seat near the front, but purposefully sat more towards the back of the room, to “teach me, what my ‘entitlement’ would get me.”
Trying To “Function”
I could write a whole novel – likely even a whole series of novels! – on all the “lessons” I was “taught” like this.
Some discrimination here, some bullying there, a bit of medical gaslighting and tadaa: You’ve got yourself a traumatised and deeply, internally ableist, undiagnosed autist. Uhm… Yey…?
Not to mention visually disabled girl, that doesn’t even know she is…
But what bad could ever come from that?… (Traffic! Traffic can come! Fast! ;-;)
And I’m pretty sure one could write another series, on all the things that taught me to judge, deny and hate myself and “oh god just adjust already! Better! More!!!”…
But the worst part in my opinion isn’t even to experience those, but to live with a brain, that learned them and now tries to avoid further punishment at all cost.
It’s masking – a helpful survival tool easily turned into utter self-destruction.
And every time I try to break out of that persona, so far from who I really am, that I so instinctively become now anytime I’m even just looked at, it feels like something or someone demands it.
Because that’s the thing with masking for me; it’s not a choice anymore.
It’s a trauma-response deeply engrained into my psyche – something I yearn to live without but just can’t. Just don’t know how to.
It’s also something that is demanded in a way. So often situations and/or people cross our path, that we, as who we are, cannot deal with, so we become people that can deal with them, no matter the internal cost.
But wait… if you can be someone who’s not as disabled as you are… are you even disabled at all?
If you can just mask it all away, why don’t you just do that? Like always?
This exact question haunts me! And I know it does so for many other autistic/neurodivergent people, who are able to mask.
When we’re able to mask, we’re often judged as “pretending” etc. when we don’t, or when we ask for accommodation.
We also often question ourselves, because “how valid is a disability you can seemingly pretend away for a while?” But the truth is: we can’t.
Masking isn’t easy.
It is utterly exhausting and can cause serious damage to our mental health.
For a lot of us, it isn’t even a choice anymore. It’s an instinctual self-preservation/survival mechanism we learned early on in our life and often don’t even realise isn’t “normal” for a long time.
Unmasking isn’t only hard because it goes against that instinct and habit, but also because for many of us, we’ve been masking for so long – trying to be someone we thought we’re “supposed to be” – that we don’t even know who we are under the mask.
That we never really had the chance to build a real sense of self, because everything we ever got to be, was “good enough”.
It can be extremely destructive.
Masking our way through things that are too much puts our nervous system under so much strain, it demands its tribute sooner or later. (e.g. Autistic Burnout)
When I mask, I hate myself.
Masking can make you feel like a terrible, dishonest person, when you constantly behave in ways to please, rather than express yourself… But unmasking would often mean not “functioning”, and that’s how you lose a job and not “fitting in” and that’s how you get beaten up and bullied in school, isn’t it?
I know this sounds dramatic, but it’s these exact experiences that teach us to mask in the first place. I don’t think anyone would destroy themselves just to try and fit in if they’d be truly accepted and safe as who they are.
I have a strong opinion on people trying to be someone they’re not (in a “putting up a role “-way)
I absolutely despise being asked how others should adjust (to me, to social situations, how they should behave to “get the girl”, etc.)
All I ever want to say to that is: “Don’t!“
Even if it means you won’t be part of that friend group, or not getting to win over that person you’re attracted to. The truth is; you won’t be compatible with everyone as your true self, but a relationship that you have to be someone else for in order for it to work, is not healthy anyways! And how do you plan on sustaining something that you had to build up a whole new persona for in order to get it in the first place?
For me, masking means I’m numb in a way, while also being in severe distress.
It’s often a state of hypoarousal, in which I can’t recognise- can’t even feel my own feelings, needs and limits. I’m fully and genuinely convinced I’m perfectly fine, even having fun sometimes!
And then, as soon as I get to a place that feels safe (my home, all alone with no one around or at least only my partner), and my brain registers it doesn’t have to uphold this “survival mode” anymore, I just drop.
Sometimes, it’s utter exhaustion that stays for days, sometimes I get physically ill with a fever and nauseating headache.
Sometimes the world crashes.
I get taken over by a wave of agony I can’t possibly describe.
I have a meltdown.
I’m currently in the process of trying to learn to stay out of this state.
To be honest, I’m not sure, wether what I’m experiencing is still “just” masking, or if my ptsd has messed around in what used to be masking so much, that now it’s just a terrible, toxic cocktail of both.
But from talking to autistic friends – I’m not the only one for whom “being functional” feels this way.
During my time in school, I used to just drop into bed after getting home. Obviously getting into trouble the next day for not having done homework.
Funnily enough, these were the only times I did manage to go to school somewhat regularly at all – I’d wake up in the middle to late evening, lay awake till the next morning and just get through. I’d have to sleep in the clothes I’d be wearing to school the next day because even just having to get ready in the morning on top of going to school, was enough to trigger a shutdown the moment I woke up.
The memory loss that comes from this amount of cognitive overexertion is only logical – I barely remember most of it, and the scraps I do remember feel like trying to remember a dream that someone else told you about.
It’s just a detatched blurr and immediate nausea when I try to remember anything.
I just kept up the “functioning” – I had to.
Is there even a way not to, when the consequence would be to be alienated even more? (Or in my case, to be threatened to be taken out of home… long story… I’m sure CPS has good sides too! ^^’)
But I couldn’t most of the time, and during these times I had a shutdown every single morning. I was eventually institutionalised for months, after being told I would be, if I missed one more day of school.
The only way I got out of what I soon learned was medical-abuse-hell? – Masking.
And crashing after they let me go.
Masking doesn’t work for anything more than what it is: A short-term survival mechanism.
Even if you’re able to keep it up for years – it can’t be a “solution” or “fix” to a disability.
If anything, it can make you more disabled over time. (But this post is already way too wordy to deeply get into the topic of autistic burnout as well.)
Breaking Out Of Internalised Ableism
So, we learned what internalised ableism is, that it’s terrible and that trying to follow its demands is destructive and harmful.
Now what?
For me, my journey with trying to break free from internalised ableism began, when I just couldn’t push any further.
I was (and still am) deeply in autistic burnout for years, and at the point I got my first diagnosis, I already had fallen physically ill from the years of stress and strain.
I needed rest. A LOT of rest.
I had to stop doing all the things that hurt me more than I could sustain. I still felt the guilt and shame, but the voice in my head had found an opponent in the voice of my partner, who kept telling me it’s not just okay, but good, not to push myself so hard at all times. That I should never push myself past my absolute limits in the first place.
I still need a lot of rest, and now that I’m educating myself about my disabilities, I’ve come to learn, that I’ll always need much more rest than I thought.
I strongly encourage you to take this step before you reach the point it took for me!
While resting and recovering from the physical consequences, I slowly started to educate myself.
If you do just one single thing to try and take back your life, do this! Educate yourself on your disability!
(Depending on your condition, you might choose to consult a professional for this.)
I read books, talked to other people with the same diagnosis, watched videos and listened to podcasts of people in similar circumstances.
For autism and ADHD especially, I found it most helpful to listen to the voices of people who speak from first hand experience.
Education is the key to understanding yourself. It shows you you’re not alone with your struggles and that they are, indeed, valid. (Please be mindful of your sources though!I’d strongly advice against short-form-content such as TikTok, reels etc. as a source of education.)
It made me realise things I didn’t even know weren’t “normal”. That things aren’t supposed to be this hard. It not only unlocked my ability to see my disability as something that’s okay, but as something real and not just “me being useless”.
Something I get to accept, thrive with (instead of despise) and accommodate.
Once you have a rough idea of who you are and what you need (and it is perfectly fine for this to change and fluctuate while you figure out what works and feels right and what doesn’t), it’s time to experiment!
Try out accommodations! See which are available for you and use them! Don’t be self conscious about accessing “official” (at work, school, etc) accommodations as well – they exist for a reason, and if you have the thing they’re meant to help with, you have a right to them!
And whatever you do; Don’t fear you’re making life “too easy for yourself”!
I still do, and my version of “making things too easy on myself” is not being in pain and leaving myself with enough energy to have feelings.
This is what internalised ableism is: Believing we should suffer “away” our disability.
Personally, I found the most healing in doing the small things:
Switching from print to e-books and putting that font size to max!
Sorting my closet by “sensory safety” and dressing according to what feels comfortable that day, rather than what looks “put together” or “not colourful enough” and taking noise protection everywhere!
Switching to smaller lamps, rather than the devil that is “the big light”!
I also had and have a lot of conversations with my partner about various things I previously wouldn’t even have dared to ask for.
He does take on a caretaker role for me, so it’s extra important I keep up good communication about energy limitations and such, but it’s also just nice for him to know that turning on the vaccuum or even just the TV – without giving me a heads up to run and hide or get my noise cancelling headphones – can hurt me, because of sudden, loud noises.
Simply said, the best way to fight internalised ableism, might be to realise it’s there and to purposefully work against it.
At least, that’s what I’m trying to do now, and while it’s hard and often makes me feel deeply ashamed, guilty or embarassed, it’s significantly improving my quality of life.
I’m only at the beginning of this journey, but I’m sure, these feelings will fade over time.
In the end, being ableist – even if it’s just to myself – simply isn’t something I want to be.
So I won’t be.
Simple as that. ^^
Thank you so much for taking the time to read my rambling!
May your days be filled with self acceptance and compassion
Have a wonderful week!
Snowdrop