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Any disabled person will tell you about the myriad of barriers that there are to accessing disability support, especially when you aren’t obviously, visibly disabled. But what happens when the biggest barrier you face is your own, internalised ableism?
I was diagnosed with myalgic encephalopathy (ME), systemic lupus erythematosus (SLE), and fibromyalgia at 17 years old, and have identified as disabled for over 10 years now. Recently, Autism and ADHD joined my list of comorbid conditions, and I realised that I’ve been disabled for my whole life. Throughout most of 2022, with my SLE and fibromyalgia flaring, and facing a severe case of Autistic burnout, I was spending between $400 and $1000 AUD per month on my health, in a country with a “public health system”.
Considering that my worsening physical and mental condition meant that I was only able to work part-time, this expense was financially crippling. I decided, with a gentle nudge from my psychologist, to apply for funding through Australia’s National Disability Insurance Scheme (NDIS) to cover the therapies I needed to support my function as a disabled, neurodivergent woman in an ableist, neurotypical world.
For those of you unfamiliar with the NDIS, it is a scheme rolled out by the Australian Government in 2013 to assist disabled people to access funding for supports that are not covered by our public health system, such as assisted living technology, occupational therapy, support workers, and capacity building psychology for Autistic people.
Accessing the NDIS is usually a notoriously lengthy and difficult process, and there’s strict inclusion criteria and rules around what you can spend your funding on.
Despite having identified as disabled for over 10 years, when my psychologist and I first started talking about accessing NDIS funding to pay for my therapies, I was surprised to realise that I didn’t feel “disabled enough” to access the support I needed.
The application form that she sent me sat unopened in my email inbox for weeks while I grappled internally with this voice that told me “you’re not disabled enough to access this funding” and “you don’t deserve this support”. Somehow, I couldn’t comprehend my own disability. I couldn’t fathom how a 29-year-old woman who has two university degrees and a professional job could be eligible for support funding.
Even though I know that I struggle with things that nondisabled people do not. Even though I can’t remember ever having a pain-free day in my life, and even though I know that most people don’t have to spend up to $1000 a month to be able to work 3 days a week, and then lie in bed exhausted and unable to function for the next 4.
I’ve spent the last 12 years of my life advocating for invisible illnesses to be recognised as disabilities by the media, the government and the general public, and yet I sat paralysed, unable to recognise it in myself, in order to complete my application.
The pervasive societal ableism that I’ve fought so hard against for my entire adult life reared it’s ugly head in my subconscious, and it took weeks, lots of therapy, and financial desperation for me to fight it enough to complete my application, and submit it.
Then came my planning meeting. An hour and a half sitting in a room with an NDIS employee, talking about my goals and support needs. Leading into this appointment, I had so much anxiety. What if she doesn’t think I’m disabled enough? What if she doesn’t believe me when I say I struggle to do my washing and clean my toilet, but I want to go back to university to study medicine? How do I make her realise how much I struggle, when my whole life, I’ve been trained to trick people into thinking I’m capable, and coping?
I’ve used my intelligence as a mask for most of my life, and the vulnerability required to drop the mask in this setting, and admit that I’m not okay and I need help to function was so difficult to muster.
I had to seek coaching from my psychologist, and friends who have accessed NDIS support prior to my appointment. They told me to “talk about my worst days”, and coached me on the language to use to convey my struggles accurately. They reminded me not to minimise my struggles, the way I’m so used to doing.
In the end, the planning meeting went well, and I was granted some funding. It’s not enough to cover all my therapies, so I’m going to need to appeal once I’ve had functional assessments done.
I can’t help but to wonder, would I have been granted more funding if I wasn’t fighting my internalised ableism throughout the whole process?
But at least now, I’ve done the self-work I needed to in order to feel worthy of support. The support I’m able to access are going to better my life, and going forward, as I appeal for more funding, the barriers I will face will be external and system-based barriers. I no longer feel unworthy of support.
I am “disabled enough”. It just sucks knowing that I needed the external validation of an organisation to feel that way, due to how ableism has infiltrated my brain.
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moreThis week is neurodiversity celebration week, a time when neurodiverse people show that we’re proud of who we are. It’s estimated that 1 in 7 people in the UK has a neurodiverse condition.
The idea of the week in essence is a great thing, but like most awareness weeks, without action it amounts to nothing.
I fully believe neurodiversity is a thing to be celebrated, without mine I wouldn’t be half as creative, straight-talking or able to chat to anyone about anything – all great skills for a freelance writer.
However being neurodiverse in the workplace comes with challenges that neurotypical people (who don’t have a neurodiverse condition) don’t even have to think about.
For example, I have auditory processing issues, meaning my brain takes a minute to catch up to the information I’ve just been told and I often wont take in information first time. So if I’m being told something important I need it in writing and meetings or phone calls will often need to be recorded or summarised after.
I also struggle with timekeeping and I’m nearly always late to every single thing I’m supposed to be at. I’ve tried not being late but inevitably it doesn’t work so instead I set alarms and manage people’s expectations. I’ve found for the most part people are understanding, but we need to change the narrative around lateness and the idea that it means not caring.
MP Emma Lewel-Buck previously told The Mirror that when she was running for office she found it difficult to access vital data because the membership list spreadsheet format was inaccessible to her “Campaigning was taking me twice as long because the format just didn’t function in the way that I do”
There are simple fixes to all of these things that employers can do to make life easier for neurodivergent people, but the fact they are still seen as “special adjustments” are holding disabled and neurodiverse people back.
The problem here is that it falls to the individual neurodivergent person to inform and educate their employer or educator and many don’t have the confidence or feel like they can safely do that.
There’s also the mental load this takes that many of us just don’t have the capacity for. If these actions are already in place for everyone, those of us who feel we can’t speak up can still be supported .
There’s also the issue with how neurodivergent people are still treated in society, autism is a punchline or synonym for unfeeling, and ADHD is constantly treated like it’s not real. Lesser known conditions like dyspraxia are still given the outdated label of clumsiness, which is then made fun of and often not associated with neurological issues such as problems with planning or processing.
While many employers and education settings now almost boast and how inclusive they are, the fact so many disabled and neurodivergent people are out of work speaks for itself
If we truly want neurodiversity to be celebrated, as it should be, we need to give neurodivergent people something to celebrate and the chance to thrive at work.
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moreI was diagnosed with ADHD in 2018. I was pretty sure I had it long before seeking a diagnosis and yet, it took me over a year to even decide to seek a referral for assessment.
The reason for this, I now realise, was internalised ableism-I was worried what people might think of me (that I was “less able”) or that I might not be taken seriously because I had done “pretty well” academically.
When I did eventually receive my diagnosis, an ADHD advocate I knew shared a delighted smile and said “Congratulations!” I thought it was a strange reaction. She explained that “some of the most creative and passionate people” she knew had ADHD.
At the time, it made me feel better because I do think of myself as creative and passionate.
Since then, however, I have come across a lot of “toxic positivity” mainly from neurotypical people around ADHD, with the trope being that it makes those of us who have it creative, passionate, out-of-the-box thinkers and is, therefore a “superpower”.
Whilst most people I know who have ADHD diagnoses are fiercely passionate and creative, the pressure to accept this narrative has the very real effect of erasing the difficulties we experience.
Yes, sometimes I am creative. Yes, if I find the right moral issue or something really ignites my interest, I can become incredibly passionate. Yes, I do have “out there”, interesting ideas.
These aspects of my personality are great, but there are times when I physically can’t action any of my creative ideas, wash the dishes or even send an email because the reward-based action centre in my brain isn’t ignited.
These are not rare incidents; they are daily struggles that can lead to total inertia and extremely low self-esteem. I miss important deadlines, always owe money at the library for overdue books and often remember a task I haven’t completed just as I’m heading out the door, or going to bed.
The toxic positivity “ADHD is my superpower” culture that exists as a sub-culture of the ADHD community that’s potentially steeped in ableism, stemming from the “inspirational disabled person” narrative makes addressing the daily challenges of living with ADHD very difficult.
The difficulties of living with ADHD are compounded by the stigma that surrounds taking medication. I was recently collecting my ADHD medication from the pharmacy and the technician asked the duty pharmacist to check everything over before she handed it to me.
The pharmacist looked at me, then at the medication and then said “to her”: “that terrifies me.” I knew what he meant, and, unfortunately, rather than react to his ignorant and highly unprofessional comment, I was stunned into silence. He meant that because ADHD medication is stimulant-bases he was “terrified” of people taking it and becoming addicts.
This is a popular opinion in general society. Certain media outlets perpetuate this myth and a quick internet search on ADHD will reveal opinions that ADHD medication is “basically a street drug”, and that it’s “brain altering”.
These narratives are false. Far from being addictive, I often forget to take my medication, because I have ADHD, which impairs my executive function and working memory.
Taking ADHD medication isn’t for everyone, but it has been hugely beneficial for me. It enables me to focus more easily on day-to-day tasks and quiets my brain, which means that I have less anxious energy.
I’m generally very outspoken about my ADHD and a very strong advocate for those who have ADHD and the adaptations and understanding we may need, but I still find talking about taking medication for it really difficult, because of the stigma that surrounds it.
With ADHD diagnoses on the rise, what we need is an honest discussion about the realities of living with ADHD and the benefits (to many) of taking medication for the management of symptoms.
We need content that acknowledges that living with ADHD is really difficult and that doesn’t compound the shame we feel by stigmatising medication, which is an essential management tool for many.
We need to call out the ADHD as a superpower narrative – because I’m definitely not a superhero.
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moreVital vessels quickly turn into a disabled person’s worst enemy.
It is easy to be drawn into the centuries-long battle all disabled people have faced. Earthenware, ceramic, and even the supposedly lighter glass and china. They litter the shop shelves both virtual and real. They draw you in with pretty shapes and quirky designs.
Silent foes, waiting until they’ve lulled you into a false sense of security to finally start their attack.
It starts quietly. A plate slips when washing the dishes – meeting its fragmented fate amongst the bubbles and forks. Easy to brush off – it’s bubbly and slippery who wouldn’t smash a plate like that? At least confined to the washing-up bowl the pieces are easy to dispose of.
Luckily your fingers miss the jagged edges and you manage to avoid a cut. One down. The silent foes are restless as they wait for their turn to sacrifice themselves to ruin your day.
Next up, the turn of the glasses. A mistake to stand and sip. Hands with a mind of their own loosen close around air as the glass hurtles to the ground – covering the floor in the sickly sweet scent of summer fruits squash.
A more demanding clean up, legs creak and ache at the repeated crouch and wipe as you try to find the almost invisible glass in the spikey syrupy mess. Invisible shards haunt you for days, for weeks. How can one small glass spread so far?
There’s quietness for a long while. You think you’ve won the battle, that your precious crockery and glassware are safe.
The silent foes watch, it’s what they wanted. You’ve gained confidence, you think you’ve finally found the key to not smashing things around the house.
Then, it begins.
Smash. Crack. Bang. Plates. Bowls. Glasses. Dinner. Breakfast. Squash. All sacrificed to the floor.
Once perfectly pristine matching sets are a hodge podge of dishes and cups picked up to try and fill the void. Frustrations and tears follow. No one wants to spend hard-earned energy on such a needlessly spikey cleanup.
The silent foes watch on, proud of themselves for carrying on their ancestor’s attack.
But then you find the secret weapon. A new invention, one that has only become an option in the last few decades.The one you wish you could yell about from the rooftops when you realise just how stupidly simple the solution is. Finally, you can help to end the centuries-long battle between disabled people and their smashable, heavy, unwieldy crockery options.
For once the silent foes have another enemy, one they never expected to break their hold on the population.
A cousin of sorts to the popular china and glass, a lightweight and often pretty alternative. But yet it had been given its place to be a brief presence in a person’s life, favoured for infants and picnics but never the everyday.
It catches your eye one damp summer day. Already reduced because we’d had our one day of summer and they need to make way for the Christmas sweeties.
A melamine plate.
You wonder if it would work, or would it be a waste of time? It’s only a pound you reason, and the design is pretty. You pick up two side plates – easy to use at the beach if your plan fails.
The first meal you try on the new melamine plate is a joy.
It’s light so there’s no fear your arms will sag on the journey from the kitchen to the dining table in the living room. It’s thicker too than you expected, no heat to burn your fingertips before you’ve set it on the table.
When it inevitably falls to the floor it clatters and bangs with an almighty racket, but…it’s still intact. Not even a scratch or chip adorn the edges.
You wonder why you’d never thought of it before, every summer beach trip had featured a long-owned set of plastic plates. Now, it has opened up a whole new world, you eagerly wait for the picnicware season to start. It’s no use shopping in the winter months, no one has any use for the bright plastic pieces.
Finally, picnicware season arrives and you eagerly buy up sets of melamine dinner plates, side plates, breakfast and pasta bowls. Plastic cups in various sizes, even a few melamine mugs. The patterns are prettier than you expected.
No more boring white, the cupboards turn into a kaleidoscope of colour. What’s left of the silent foes are donated, to help out those who aren’t in a quiet battle with them.
As you sip and eat, from a table laid for a year-long picnic, you feel a strange joy.
You’re finally free of the centuries-long battle all disabled people have faced. You hope others can see your words and vanquish the silent foes lurking in their cupboards.
Vital vessels are no longer a disabled person’s worst enemy.
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moreEditors Notes: IPSO Told me Nobody Complains About the UK Media’s Ableism- so Let’s Prove Them Wrong
One of my goals this year is to make a lasting change in the reporting of disability in the media. So when I secured a meeting with the head of standards and regulation at the Independent Press Standards Organisation (IPSO) about guidelines for reporting disability I thought I was one step closer. Oh, how wrong I was.
IPSO regulates some of the biggest papers in the UK, including Daily Mail, The Sun, The Times, The Telegraph, and Metro – some of the worst offenders in the last decade of casual and downright overt ableism.
But instead of discussing potentially coming up with guidance, I was told by the biggest print media regulator in the UK that there was no remit for this.
Because apparently, nobody complains about the way the media writes about disabled people in this country.
Now you and I both know that isn’t correct, and when I drilled down into that, it was actually that they’ve never had enough complaints about one specific instance of ableism in the media to make a ruling.
But this is what happens when it’s a systemic problem and the majority of what is reported about us is bad.
Unlike other movements, there are no specific catalysts for the discrimination we receive on a daily basis. It’s become such a normal part of society to see disability as one of the worst things that can happen to someone, a narrative to which the press has massively attributed.
Ableism in the media happens every single day. In small ways like the language that suggests disabled people are suffering or that we’re inspirational. Then there are the ingrained ways we’ve seen for decades such as how the press massively contributed to the narrative that everyone on benefits are scroungers and faking to not have to work.
Then more recently is the really really harmful way that columnists and experts are given inches to proclaim that chronic and neurodivergent conditions aren’t real and are inspired by TikTok trends.
I see this belief often and as someone who has been misunderstood and derided most of their life over their conditions I can’t explain the untold damage it does.
These narratives also don’t ask why so many people are suddenly seeing themselves in social media posts after years of thinking they were just “weird” or being gaslit by professionals,
While the Head of Standards agreed with me that there is always lots of outrage on social media when a paper is ableist, she said it doesn’t translate into complaints.
So, I need your help to send a message to IPSO and mainstream media that the way they write about disability and the message they spread to their mostly non-disabled readership is not okay.
On the same day as my meeting, Daily Mail published “why are so many adults being diagnosed with ADHD now?” Then at the weekend, a columnist at The Times wrote “I’m sorry but all this ADHD doesn’t add up”
It’s by no means just these two publications or just about ADHD, but IPSO needs to reach a threshold of complaints and ADHD seems to be the easy target at the minute.
So, if IPSO wants complaints we need to give them some.
Here’s how to make a complaint about either or both of them:
Go to this link
In section 1: on click material published in print and/ or online click online for Daily Mail and both for The Times and write the publication name Daily Mail or The Times.
In section 2: click no on previously contacted publication
For the Mail complaint
Headline: Why are so many adults now being diagnosed with ADHD?
Date: 30/01/23
For The Times complaint
Headline: I’m sorry but all this ADHD doesn’t add up
Date: 05/02/22
In section 3: For clauses breached click 12 discrimination and then on the next page, write your own reasons for the complaint or copy and paste from the templates I created below.
For the Daily Mail article, you can use this template.
And for The Times one, I created this template:
Finally, fill in your details, review and send!
Please share this widely with your networks, pals and communities using the hashtag #MediaAbleismWatch. If you want to share this all on Twitter, I have a quick tweet you can share, or a thread about The Times piece and one about the Mail one.
I know that these things take emotional, mental and physical energy so please only do so if you can, a share on social media would also be massively appreciated if you don’t have the capacity to complain.
The burden shouldn’t fall on us to do this and it shouldn’t take us complaining for it to be changed. But we need to take a stand.
Let’s show them how loud our voices can be
In solidarity
Rachel
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The post Editors Notes: IPSO Told me Nobody Complains About the UK Media’s Ableism- so Let’s Prove Them Wrong appeared first on The Unwritten.
moreIt was earlier this year that my health took a turn for the worse and I found myself unable to work. My temporary job was coming to a close anyway, and a combination of my ongoing physical health problems and my newly worsened mental health meant that job searching wasn’t something I could do either.
I was left with one choice, the benefits system.
If you’re disabled in the UK, there’s two things you can get benefits-wise. Universal Credit (UC) – with a premium if you’re unfit for work or work-related activity – and Personal Independence Payment (PIP).
If you’re lucky enough to have begun your journey into the hoops the DWP requires you to jump before the changeover to UC, or you live in an area where it hasn’t happened, you may get Employment and Support Allowance (ESA), but they’re, at least theoretically, the same thing.
As someone who has been through the process required for both of these benefits recently, I can tell you that it’s absolutely shite.
ESA goes a bit like this – you hand in doctors’ notes to be signed off by your work coach for a month or so – because god forbid the DWP just actually take your doctors word for it. Then, you’re put on the “health journey”.
Unlike the journey to the (relative) health I was hoping I could go on, it was very much a road of traumatic twists and turns.
A paper form arrives on your doorstep – a nightmare in a brown envelope I will forever refer to as The Form.
Thankfully, it was also available as one you could type in – useful when writing in all of those tiny boxes would leave you unable to use your right hand for about a week.
The Form, for the uninitiated, asks you to explain exactly what it is that you can’t do.
Plenty has been said about The Form, I’m not going to repeat everything that other people have put better than I could. What I will say is that I am forever thankful that I was having regular therapy sessions while I had to fill in The Form.
I’m sure Florence*, my overworked charity-based therapist who was only able to provide me with eight sessions when I really need them indefinitely, had some choice words for the author of The Form.
It can’t have been fun for her that I spent at least two of those eight crying over the feelings of uselessness it left me with.
The questions range from “how far can you walk?” – something you’ll generally never get the same answer to twice – to “can you control your bladder and bowels” etc.
Give all of these details over to an assessor who will literally never meet you for them to see if they can tick enough boxes to give you money so you can afford to eat.
And then you wait.
Universal credit is an absolute pittance, and you’re stuck on the lowest possible rate while you wait for the paperwork.
Next stop is the work capability assessment. During covid-19, they were doing these on the phone, but they decided that I would have to come in, despite me requesting the phone on two separate occasions.
You’ve just told them that leaving the house is hard, that walking very far is hard, that talking to strangers is really hard, so they of course say “come here and do all of these things so we can see if you’re lying or not.”
My work capability assessment didn’t exactly go to plan, in as far as I didn’t get instantly awarded the help I clearly needed, but also in that they failed in their attempt to call me a liar. And they did attempt to.
After saying my assessor would be running more than half an hour late, a time they advanced on from “no more than 15 minutes” and actively encouraging me to reschedule, a message appeared in my file. “Claimant arrived on time. Wouldn’t wait more than 30 minutes”.
Luckily for me at this point is that my work coach – who I still had to see every few weeks despite my doctor signing me off – was outraged at this.
Honestly, she felt like the only person in the whole system who was on my side. I’m fully aware she is part of the system, and her job often involves the trauma of sanctioning and pushing unsuitable jobs on people, but I was a little bit glad to have her.
I did in fact get a telephone assessment after that. A lovely nurse practitioner who seemed to understand my conditions perfectly took less than half an hour – and not all of her questionnaire – to conclude I wasn’t fit for work or work-related activity.
Not that she told me that though. She just ended the call and I had another nervous wait for the decision – formulating my potential appeal strategy the whole time.
The decision arrived by a message telling me to look at another message, which told me to look at an attached letter, which actually just felt like taking the piss at that point. But I was given the top rate. I didn’t need that appeal strategy.
Next up was PIP. In my final appointment with my work coach, she encouraged me to go for it, telling me if it was up to her I’d have the highest rate of everything instantly. If only it were so easy.
You start with a 20 minute phone call in which you provide a bunch of information that you only have to provide again later anyway, and then you get The Other Form.
My time with Florence was over by this point, so I had to venture into this one alone. A lot of crying, some swearing, and just about managing to fight the inadequacy caused by listing quite how useless you actually are. Just how many people have to know I wet myself before I can be given enough money to have a tiny amount of quality of life? Eventually, The Other Form was sent out into the ether as well.
I’m still waiting on the next stage of this. When I requested The Other Form, they told me they’d supply me with information regarding Motability.
This information never arrived, but I still spent weeks thinking about how amazing it would be to whizz around on my new wheels, and never have to worry that I’d be stuck in a city centre because my hips have given up on me.
Weeks of feeling both strung along and vaguely hopeful, weeks where I had no choice but to do things that have made my pain worse; that would have been easier with the help I told them I needed. The Waiting is the worst part.
At one point, I considered calling them to see how my application was progressing. But I’ve learned a lot about the benefits system, and I didn’t want the fact that I was “able” to call them to count against me. As if making one call to reduce the stress of uncertainty meant there wasn’t anything wrong with me.
I believe the next stage of PIP is another assessment. Why they can’t just take the result of the one they just did is beyond me.
We hear about our friends’ appeals and tribunals, and yes a lot of them do win, but can we face that ourselves? Is it worth the trauma for the pittance you might get if you manage to get someone sympathetic? The Form and The Other Form sent me into states of panic, asking me about the very anxiety they were worsening.
You’re less likely to hear about it than about “benefit fraud”, but £15 billion of benefits were unclaimed in 2020. This is painted as people not applying, but in reality it’s down to how difficult it is to actually claim.
The system is so hard to navigate, even if you are a person who isn’t suffering the kind of health issues that stop you from being able to work. Applying for benefits is so traumatic that you should qualify for additional money just for having to go through it in the first place.
I have this theory about our disability benefits and it’s one I’m sure many people share. The system is not about making sure everyone is “deserving”. It’s not about reducing fraud. No, it’s about trying to scare us off.
They want us to become overwhelmed, to exhaust ourselves with worry. And, ultimately, to give up.
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The post Applying for Disability Benefits is Traumatic and Exhausting- But I Think That’s the Point appeared first on The Unwritten.
moreBox-Ticking Exercise is the new monthly(-ish) column by Melissa Parker in which she dissects ableism and the portrayal of disability in tv film and media. Being M, this is of course all done with her pen as a scalpel.
Columnist Allison Pearson’s piece about the new series of Strictly Come Dancing expresses an often loud, profoundly entrenched privilege – the right to spew bile mindlessly and without consequence.
“From mis-matched same-sex couples to the show’s first contestant with dwarfism, it’s clear producers value ‘inclusion’ over entertainment.”
She persists elsewhere in the piece, “but fans I have spoken to already worry our much-loved dance competition is turning into a box-ticking exercise.”
In a world where disabled people have been hidden away for so long, our equality will always feel like their oppression.
It chips away gradually at their flawed worldview – they have the right – we are thrown scraps of our humanity if we do as we’re told.
“Let me stop myself. Do you know what I am doing right now? I am doing what I always feel I have to do, making sure that I come across as happy, positive, and easy to work with.”
Listen, truly listen to Rose Ayling-Ellis’ in her Alternative MacTaggart lecture.
“My reality isn’t always nice.” Rose continues.
Pearson, in turn, filtered and smoothed Ayling-Ellis’ time on Strictly, which according to her narrative, “felt properly ground-breaking. It was an artistic triumph that required no allowances to be made. Millions may well feel this latest move is a step too far.”
There is no such privilege of piercing, unthinking honesty for disabled people—just the party line.
Not to mention the fact that Pearson’s statement about Rose just isn’t true – allowances were made. She had a sign language interpreter with her at all times, her dance partner Giovanni and others she worked with ensured she could understand what they were saying at all times.
Ayling-Ellis’ very appearance furthered the cause of BSL as a language, yet all of this is brushed under the carpet as we hold her aloft as this bastion of a “good disabled person”.
You can feel Ayling-Ellis’ fear, her meticulous consideration, in her still-filtered truth. After all, she’s the “deaf pioneer” and “the poster girl for the deaf community.” She needs to feed egos – to appear palatable, restrained and manageable lest that poster, and her platform, are pulled and sliced.
This precarious position is used to further the cause of ableism and ignorance. The article compares Ayling-Ellis and Paralympic swimmer Ellie Simmonds among this year’s competitors. To use one disabled woman as a prop to strike another is unsettlingly commonplace.
Often ableism isn’t as overt as slurs, chants or slogans. Rather, its potency comes from its insidiousness. It’s in the quiet ways we’re told about who wields power against us and the consequences of our nonconformity.
Silence is the most effective and eloquent thing a non-disabled person can contribute to this conversation.
However, the column inches, Twitter word counts, and those millions of people make plain a simply held truth – a premise upon which our society is built, and it cannot be allowed to alter – non-disabled must have the final word.
This isn’t about them, but expressing this sentiment turns social media into a blood sport.
In many ways, these views are straight from childhood, a different era but one which seeped into ours: disabled women should be pliable. They shouldn’t make a fuss or object. They shouldn’t expect more, and all minorities should expect harsh rebukes if they don’t integrate pleasingly – just the right way.
Integration has always meant sanding ourselves down and taking it on the chin. Pearson, let’s not forget, fundamentally, wrote in a national newspaper that people who can’t hide or minimise their disabilities should conceal themselves – they shouldn’t be on television.
Treating disabled people as human beings is a step too far.
No one can be allowed to overwhelm an essential premise of our society. We should take what they give us. They’ll be compassionate in a sneery, soulless way.
They will rip apart our hard-fought battles and minimise them with empty public displays of empathy. But occasionally, bile will rise in their throats to be articulated softly, loudly because our presence has pushed them too far.
After all, you can’t expect the world to adapt to you when that has been your rightful burden. How dare you?
But how do we dismantle such a vast yet fragile structure? We keep going – we push forward.
The reaction of those who fear change was never respectful – or silent. But that goes against their nature – their position in this fragile structure.
Having written quite extensively about disability representation in the media, I have been called a “wh*re” and a “c*nt” for daring to suggest that disabled people are mistreated and requestion that heaven forbid disabled people should play disabled roles.
It’s part of the daily reality, it would be effortless to sit on the sidelines, but we, whether on TV, in film or articles like this, are fighting back. We’re built different – the generations of disabled people who came before us ensured it.
Still, as soon as a disabled woman dares to pioneer, she is no longer tolerable.
The trolling and backlash – both on paper and across social media – experienced by Ayling-Ellis and Simmonds proves that reality. Many non-disabled people instinctively attack when set against the mildest scrutiny and the mildest criticism of their deeply held – deeply flawed – beliefs.
In the face of our new hard-earned reality and our nerve, brass, and insolence, we need to be put back in our place. But sheer nostalgia-tinged ignorance won’t move us, nor will the collective force of opinions, column inches, and Twitter word count.
This “tick-box exercise” is slowly dismantling a worldview, a system of oppression – and that was always going to be an ugly, bitter process, but it’s one we’re ready for.
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The post Box-Ticking Exercise: Ellie Simmonds’ Inclusion on Strictly is Hard Fought appeared first on The Unwritten.
moreComedian Rosie Jones has made a name for herself on shows such as The Last Leg and Would I Lie To You?. Her unique style of self-depreciation has made her a household name in recent years and a particular favourite within the disabled community. Rosie has cerebral palsy and raises awareness of disability issues within her comedy.
She recently came under fire when it was revealed that she occasionally performs in venues with little to no accessibility meaning that many disabled fans are unable to attend shows.
With this comes the question of whether or not disabled people should be responsible for lack of access or whether this rightful anger has been misplaced. Should it instead be directed at the venues instead of the performer?
My personal feeling is that living with a disability is difficult enough and that Rosie shouldn’t be the one coming under fire here. As she pointed out on Twitter many venues don’t have access – something I have been talking and campaigning about for years – but that doesn’t make it her fault.
Whilst the criticism of the venue is valid, I can’t get behind tearing down a performer who breaks down barriers on the daily just by talking about disability on a national scale. Many people need to be educated about disability issues, not least non-disabled people, so is it really so bad that Rosie performs to a wider audience?
Of course, we should be able to enter any venue safely and without hassle but the reality is different.
By asking Rosie to perform in only accessible venues, it would mean that she isn’t able to spread the level of awareness we need to see. I understand wholeheartedly the disappointment and anger many feel but would the backlash be as newsworthy as it’s become if Rosie was non-disabled? My guess is not.
I’ve been to many events that haven’t catered to my needs but I don’t see that making the news. Mostly because the performer isn’t disabled and nobody cares that I’m there, but surely disabled people shouldn’t be responsible for change at every level? Putting the blame onto a disabled woman instead of the venues and promoters that handle the shows seems incredibly counterintuitive. And it by no means fixes the problem.
As a community that is consistently left out of discussions around inclusion, I think we sometimes have a tendency to pick at smaller problems rather than look at the bigger picture. If Rosie Jones didn’t perform in these venues her income would be considerably less – yet the venue would still be inaccessible. Has anyone even considered that Rosie herself may struggle to perform in these venues?
Why are disabled people being demanded to be perfect advocates when no one else bothers in the first place?
What we should be aiming for is a complete overhaul of entertainment accessibility so that both fans and performers can have their needs met. The real headline should read ‘Rosie Jones is made to perform in inaccessible venues due to lack of access’.
Responding to the criticism the comedian tweeted “I feel like I can show solidarity with the disability community by performing in these inaccessible venues and educating them on how to be more accessible. I also think everybody should be held accountable.”
She agrees with my previous sentiment as she continues: “Very few of my non-disabled colleagues are expected to only perform in accessible venues and then face negativity online when they do”.
Within the Twitter thread, she also clarified that her tour next year will be accessible for everyone and that this is the only time in which she has had a choice in where she can perform.
Despite the statement, Rosie also came under fire for her inaccessible Twitter account. She has been called out on many occasions for not using ALT text on images. This is something in her control and definitely something that needs addressing. One Twitter user said they’d asked for ALT text so many times they eventually gave up.
It seems a shame that Rosie and her team haven’t addressed this issue when it’s such a simple fix that will help the disabled community overall.
I think it’s fair to say that the comedian has a long way to go in terms of her social media presence but I do think we should be cutting disabled people slack and allowing for more learning and change to happen.
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The post Why the Rosie Jones Accessibility Backlash is Misplaced appeared first on The Unwritten.
moreAge fourteen, after my mental health crisis, I sat in front of the first professional who told me I was probably autistic. It didn’t make any sense – the very specific notion I had of autism was of a cisgender white boy, one who was good at maths and didn’t want to speak to anyone. How could that be me?
It took several years of unpicking to understand what being autistic really meant, and what it meant for me specifically – it certainly wasn’t being good at maths or liking trains. There was nothing in the mainstream media that looked any different to the boy I knew from primary school, constantly compounding the idea I always had.
Rain Man is still cited for autism representation today, The Big Bang Theory caused the savant idea to be pushed even further, and Atypical, though more recent, is not much better. They all have much of the same characteristics in common, as well as being played by non-autistic actors. Sia’s Music was no more than a caricature of autism, causing ableist harm, particularly to non-speaking autistic individuals.
But seven years later, enter: the Netflix reboot of Australian TV series Heartbreak High – a beginning to the representation we have all so desperately needed.
Chloe Hayden, autistic actress and well-known TikToker, stars as Quinn Gallagher-Jones, known more commonly as Quinni. From the moment she steps on screen covered in glittery makeup and star stickers, it is obvious she is not your male autistic stereotype. She is a queer, autistic girl, there as part of the main cast of school kids, and there is no fading into the background here.
For those of us who are autistic ourselves, the representation is there quickly – Quinni bypasses social norms, asking difficult questions in a room gone silent, and is shown stimming in the first episode.
But it is the second episode where Quinni comes into the forefront and the representation becomes more than something background or implied.
We watch as Quinni faces something so many autistic people will relate to, where she sits in a restaurant unable to focus on the words of Sasha So (Gemma Chua-Tran) as they fade into the background. The editors of the show managed to master the way that we get to see Quinni’s overload through her eyes, zoning in on sensory input as she becomes increasingly overwhelmed.
She masks her overwhelm until she is in a safe space with best friend Darren, who already knows how to support her when in a meltdown, telling the others not to touch her.
The conversation that follows later with Sasha is one which is almost identical to many I’ve had, Quinni blurting out that she is autistic as she is being told her face wasn’t expressive enough and she didn’t seem interested in what was going on, things so many autistic people will have been criticised for too.
Part of the beauty of the authenticity Quinni provides is not only the exposure it will provide to non-autistic people, but the liberation I feel, seeing myself on screen for the first time ever. I have never seen someone like me on a platform like this. I got to watch her have a meltdown like mine, sat on the floor at home, and watch her heart break as Sasha says that sometimes it’s “a lot for her”.
Had I seen Quinni when I was younger, the way I felt about myself for years might have been different. I might have felt more self-assured, like I wasn’t broken, and like I could have been myself in school instead of hiding that I was autistic until I had left sixth form.
Quinni’s part in Heartbreak High will be normalising so many aspects of being autistic that are seen as weird. The opening scene of one episode shows her following a multi-step daily routine to the letter, which is later challenged by Sasha; it is clear to the viewer that this is just a part of Quinni’s needs. She is not forced to speak when she experiences a non-verbal period after her meltdown, her friends again telling others that it is just a part of who she is. There’s no trying to “fix” or “cure” her.
Heartbreak High has managed to engage with so many of the nuances and layers of being autistic within its eight episode season. There is no pretending here that we don’t face significant ableism from our peers or when we are trying to engage with allistic society and relationships, feeling like we are too much and questioning everything.
But, easily and effectively contrasted, there is also celebration of the beauty of autistic joy when we engage with our special interests, as we see Quinni do when she is enveloped by a blue wig, talking to her favourite author.
The most crucial part of the representation we see here is the way it is intertwined into each episode regardless of whether Quinni is the focus. We see her stimming openly, infodumping to others, and taking things literally across parts of episodes where someone else is taking main stage. Her noise-cancelling headphones become a part of her outfits, silently signalling her looking after her sensory needs.
We see an autistic, queer, non-male character getting to engage with relationships and embracing their sexuality, something almost unheard of. She talks about sex, she drinks alcohol and goes to parties, she swears – there is no infantilisation here, no acting as if we can’t engage with “taboo” topics.
Chloe’s Instagram post after the release of the show
Quinni is not the end point of authentic autistic representation; she should be the start, opening up the eyes of the media. Every aspect of her character is not only important for putting it on our screens, but the way it comes acted genuinely from Hayden’s lived experience.
We need more of this, with every aspect of diversity – we need Black autistic people on our screens, non-speaking autistic people, autistic people with physical disabilities.
Hayden has given us something we have had so rarely until this point. I want to see more of it, because we cannot underestimate the way representation changes and saves lives.
Heartbreak High is available to watch on Netflix, along with the original series.
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