14/01/2021

Autism Functioning Labels & Why They're Problematic

This piece is part of a series of paid commissioned opinion pieces by Disabled writers. Disabled people are constantly asked to work for free, to give their opinion for free and to educate people for free, and so I have created this space to not only give Disabled writers the opportunity to write and speak, but to gain income as well. You can expect to hear from a wide variety of Disabled, Deaf and hard of hearing, Neurodivergent people and those living with chronic and mental illnesses. This is entirely fundraised for, so if you can spare anything at all to help fund this then I would be so grateful if you donated to the PayPal Pool. 

Autism Functioning Labels & Why They're Problematic

My autism diagnosis was delivered in a dark and stuffy meeting room, just along the corridor from the classroom where I'd considered that I could be autistic. Amidst a chaotic history lesson, a classmate suggested that I researched autism, after he'd picked up on the extent of some of my "quirks" as I labelled them. Truth be told, at first I thought I was being insulted having only really heard "autistic" used as a synonym for "weird" or "freak". I was vaguely aware that a friend's sibling had an autism diagnosis, but I couldn't identify a single similarity with them, other than a shared distaste for loud noises. Nonetheless, I would receive my own diagnosis around a year later, packaged in pages of notes and sealed with a long-winded label: Autism Spectrum Disorder Level 1 (Non-Intellectual and Non-Language Impaired). Or, as I was often reminded, "high functioning autism".

Understandably, people react to their diagnosis in different ways; some people prefer to come out slowly, others will refrain from disclosing it all together. I wanted to tell everyone. For the first time in my life, I felt understood. There was something so freeing and affirming about having confirmation that the differences I had worked so hard to supress were okay. Finally, my difficulties with regulating my emotions, my rigid, literal way of thinking about things, and sensory struggles had a name: autism. More often than not, I was met with doubt and disapproval. I did, however, find that people found my diagnosis more palatable if I described myself as "high functioning". Admittedly, it was easier for me to accept it if I thought about it that way too.

Autism, as is so often stated, is a spectrum. Often, however, this notion is used to support a false binary. There is a common misconception that if you are autistic you belong in one of two categories: "high functioning" or "low functioning". If you're considered "high functioning" you likely speak, attend mainstream school, and mask (i.e. hide) your traits well enough to function in a social setting. Typically, "low functioning" is used in reference to non-speaking autistic people, particularly those with a co-occurring learning or intellectual disability. Human beings tend to slot things into neat little categories with neat little labels. The problem with functioning labels, is that they just don't cut it; they are both redundant and offensive. So often "high functioning" is used as a synonym for "savant" or a euphemism for "not really autistic" - either way, it is often used to justify ignoring a person's support requirements. 

Conversely, "low functioning" is used to peddle the notion that speaking is the superior mode of communication, and that autistic people with a particular set of consistently high support needs are incapable of autonomy. The idea of autism as a spectrum is supposed to illustrate that being autistic affects no two people in the same way; our difficulties can vary depending on time, place, or context. To assign such rigid labels entirely misrepresents the experiences of autistic people all over the spectrum, a great illustration of this can be found at Art Of Autism. 

When I was first diagnosed, there were a lot of confused responses. One person asked, after I'd been assessed by a team of psychologists, if "you're sure you're autistic?" adding; "my mum works in a special school and you're nothing like the kids she teaches". 

I couldn't have responded quicker, insisting that I was "high functioning" and that those kids were "low functioning". I recognise now that this move, to separate myself from other autistic people, was one fuelled by internalised ableism. In doing so, not only was I mistakenly positioning myself as being a "better" kind of autistic person, I was reinforcing the very stereotypes that would prevent me from getting the support that I needed.

As I would discover, when people hear that you're "high functioning" they expect you to mask to the max. Or they start to ask questions about your savant skills and superpowers - reinforcing the common misconception that all autistic people are geniuses. This conception of autism can push people one of two ways: towards a superiority complex, or into the arms of imposter syndrome. I still find myself embraced by the latter, plagued by the question: "am I autistic enough?".

It has been around five years since I was diagnosed. I no longer think of myself as "high functioning". Hannah Gadsby, in her charming stand up show Douglas said it best: "I have what's called high functioning autism, which is a terrible name for what I have because it gives the impression that I function highly". When I have to rely on my partner to cook all my meals, tie my shoelaces, and answer my phone calls I don't feel "high functioning". When I'm teared up in a lecture unable to concentrate because of someone's pen clicking six rows behind me, I don't feel "mildly autistic". When I have to cancel plans with people I love because I'm so drained from a meltdown, I don't really feel like autism is my "superpower". Instead, in those contexts where I have to disclose my diagnosis for the sake of accommodations, I opt to describe my specific support needs. Not only does this avoid reinforcing functioning labels, it also helps to ensure that I'm more likely to receive the specific supports that I need.

As the old adage goes, when you've met one autistic person, you have met one autistic person.

Hailie Pentleton (she/her) is an English Literature and Philosophy student at the University of Glasgow. She is currently the Views editor for the Glasgow Guardian and the Disability Equality Officer for her Student Representative Council. Her favourite subjects to write about are neurodivergence, disability issues, books and education. 

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05/01/2021

Reflecting On My 2020 Goals & Achievements

I want to start off this post by saying that if the only thing you achieved in 2020 was surviving it, then that is more than enough. It was a rough year and most goals and plans went out the window, but I still really wanted to write this post and my decision to do so is definitely influenced by the fact that I actually ended up setting some pretty Covid-friendly goals for the year. My goals over the last few years have focused more on personal growth rather things like visit 3 new countries, so it meant that actually I was in a pretty good position to achieve them, even during a pandemic. I also really want to celebrate everything I have achieved despite the challenges of this year, but as I say, it really is okay if all you did in 2020 was get through the year, that was probably my biggest achievement of them all. 

One of my biggest goals for 2020 was to learn to drive and technically I didn't complete that but given the global pandemic I'm going to give this one a big tick because I at least have my car! Getting an adapted car was step one of the process for me, but it's a step that was always going to take a long time so I am beyond happy that despite the fact I can't drive it myself yet, I'm going into 2021 a lot further along in my driving journey than this time one year ago. Of course right now driving lessons, and even my theory test, is off the cards but I know that 2021 will be the year I get my driving licence! 

One of my other big goals was career based, I really wanted to get a regular writing job in 2020. I love that my job allows me to write for different publications each week but the idea of having a regular gig, perhaps not a monthly column but something consistent, really appealed. I knew that I wanted to share my car and driving journey and so I pitched a series of articles to the Motability Scheme and they loved the idea! This is one goal I'd like to carry over into 2021 though, a monthly column or similar would be a dream. 


As for my blog my two goals were to blog at least twice a month and work on my Instagram more. Other than June, when ideas and motivation were running low because of lockdown, I did blog at least twice a month and I am really proud of that! Theatre was shut for most of the year and so I was left with only disability topics to lean on, but I got creative and I'm really happy that despite the year having potential to be the least creative so far, I still managed to meet my content goal. I think for 2021 I'd like to ideally be putting out 3 posts a month but with us being in lockdown again I'm not putting any pressure on myself to create if I'm not feeling it. As for Instagram, I went from posting a couple of times a month to a couple of times a week, and I even experimented with posting a few reels! I think I've figured out what kind of content I want to be putting out on Instagram now and that really helps, and I've loved growing my photography Instagram as well, I've got a little goal of reaching 1,000 followers on there this year!

One of my personal growth goals was to put myself out there more, especially when it comes to my photography, and I honestly thought this would be one goal that I couldn't tick off when we went into the first lockdown but I think I smashed it. Once restrictions eased and theatre performances started up again outside I went for opportunity after opportunity. If I saw an event or performance that was accessible then I popped over an email introducing myself and I got myself several photography jobs throughout the Summer as a result. I knew that as a wheelchair user in a fairly inaccessible industry I was going to have to make my own path and opportunities and I really used all the Covid-friendly outdoor events as a way to build experience without accessibility even being an issue. I had the best time photographing a graduate showcase, an outdoor theatre festival, a workshop performance and doing some headshot and portrait photography. I could have quite easily have decided not to pursue photography when the world turned upside down but I am so glad I persevered and just put myself out there. In 2020 I truly learnt that the worst thing people can say, is no. 

Some of my favourite photos I took in 2020

You can read about my 2020 books goal in this post but now I want to talk a little about some of my achievements. I've talked already about the photography side of things, something I'm incredibly proud of, but I also made some pretty big steps forward when it comes to my freelance writing and work.

Perhaps the biggest thing that happened in 2020 for me was that I moved off ESA (employment and support allowance) and on to Universal Credit, both of which are financial benefit support in the UK. I'd been on ESA since I was 17 due to my inability to work, and whilst I still wouldn't be able to work a full time traditional job, over the past few years I have been able to work part time hours doing self employed work. I got to the point with ESA where I was starting to be able to work more hours, and thus earn more, than the benefit allowed and so it was time to take the scary step of moving to UC. In the end I feel very lucky to say that it was a breeze and it's already proving to be the right decision. I can pursue as much work as my body allows me to now, and for 2021 it might be a bit of a pipe dream but I'd love to be able to move off Universal Credit completely. 

In 2020 I wrote for 5 new publications, as well as having a quote published in a book. I had 2 articles in print and wrote on countless different topics for online publications. I went from only accepting offers that came my way to now actively pitching multiple pieces a week to publications, which has helped me to grow in confidence so much. Writing wise it's hard to beat the year where I became a published author but 2020 was really important for my writing career, I learnt a lot about what I enjoy writing about. 

As for my 2021 my goals they are simple again, I want to read more, write more and take more photos. I want to carry on blogging at least twice a month, reach 5,000 Instagram followers and write for at least 5 new publications. I want to cook more and order Deliveroo less, start swimming again when it's safe and save more money. I also really want to get at least 10 photography jobs, I've been modest with the number as who knows when I'll be fully back to photography but I proved to myself last year that there are jobs to be found even in the hardest times. 

Who knows what 2021 holds but I know one thing for sure, 2020 showed me I can survive and thrive through anything.

31/12/2020

My Top 10 Books Of 2020

When I set my goal of reading one book a month at the start of the year it's safe to say that I had no idea a global pandemic was around the corner that would give me more free time than I'd had in years. Despite being a bookworm I think I read about 3 books in 2019 and so I was determined that 2020 would be the year that I rediscovered my love for reading. Well, just the other day I finished my 50th book of the year so I think we can say that I have well and truly found my love for books again. For me it was all about learning what I loved to read, and as you'll see in this post that tends to be dystopian fiction's, medical non-fictions, anything space related and non-fiction books by disabled authors. I truly have 4 categories of books that I love most and my bookshelf heavily reflects that. As an adult I've found myself more drawn to non-fiction books so I'm glad that this year I've managed to rekindle my love for fiction by finding the genres I love. 


FICTION

The Unit by Ninni Holmqvist

Kicking things off is a dystopian novel, which is also the first book I've read that is translated from another language, and it did not disappoint. The Unit is set in a society where older people who are deemed economically worthless are sent to a retirement community that resembles a 5 star hotel. They live a life of luxury with gourmet food and everything provided for them. The catch is that the residents must consent to medical experiments and donating their organs, until they provide their final donation. This definitely isn't a story for the faint hearted but I adore dystopian novels, particularly those that have a foot in reality still. I sped my way through this and I think it would be right up your street if you like The Handmaid's Tale.

The Testaments by Margaret Atwood

Speaking of The Handmaid's Tale, the paperback copy of the sequel, The Testaments, finally came out this year and I was quick to snap up a copy. Now, I don't want to spoil anything because I went into this book not knowing when or where it was set and who narrates it, and I'm glad because it made it so much more enjoyable to read. What I can say though that this is a sequel done right, you can really tell that Margaret Atwood has had years to think about how she'd like the story of Gilead to end and it blends into the ongoing narrative in the TV show flawlessly too. I was intimidated by how long this book is but in the end I raced through it in a couple of days! 

Sweet Pea by C.J. Skuse 

This was only the 5th book I read this year but it has stuck in my mind everyday since then. I'm featuring Sweet Pea but the sequel In Bloom is also very much on this list and I don't doubt that come February 2021 the 3rd book, Dead Head, will be a firm favourite too. If you're a fan of Killing Eve then this series will be perfect for you, with it following female serial killer Rhiannon, who I guarantee you will end up rooting for. The writing style really hooked me in and is present across all the authors writing, I strongly recommend you also check out The Alibi Girl. If I had to choose a standout book/series this year then I think Sweet Pea wins the prize. 

Vox by Christina Dalcher

It's no surprise that my final fiction favourite of the year is another dystopian story, which is another that I would recommend to any The Handmaid's Tale fans. This was the book that reignited my love for reading at the start of the year, and really showed me what I enjoyed reading. It's set in a dystopian era where women are only permitted to speak 100 words a day, following Jean McClellan as she attempts to fight back. Again I really liked this story because scarily I felt that it wasn't wildly unbelievable. A must read for any dystopian fans!


NON-FICTION

Unnatural Causes by Dr Richard Shepherd

Now we move on to one of my other favourite genres, medical non-fictions. I've been obsessed with medicine for as long as I can remember, going from watching Casualty as a child to medical documentaries as a teenager and now books as an adult, in fact I even watched the spinal fusion surgery and hip replacement I've had myself on YouTube prior to undergoing the operations, so you could say I've got a strong stomach. Unnatural causes ticked every box I wanted as Dr Richard Shepherd outlined his time as one of Britain's top forensic pathologist's. There's everything from famous cases to how his work affected his personal life, and it really did grip me. Silent Witness is one of my favourite TV shows and this book really was like a real life version. This is a profession we often don't hear much about so it really was a fascinating insight into the realities of being a forensic pathologist. 

Why I'm No Longer Talking To White People About Race by Reni Eddo-Lodge

Thanks to the Black Lives Matter movement 2020 was the year that I hunted out more books by non-white authors, particularly black authors. There's a reason why this book in particular gets recommended again and again, because it really is enlightening. I thought I was pretty clued up on racism but just a few chapters in and I recognised that actually, I knew very little, especially around Britain's history with racism. This is the kind of stuff that should be taught in schools, and the fact that it isn't just goes to show that racism is a problem in this country, don't for one second think that this is just a US problem. One of my goals for 2021 now is to read more fiction books by non-white authors as that's definitely one of the areas in which my bookshelf is very white dominated. I hope that everyone carries on being more conscious of the books they're reading and who they are by beyond 2020. 

Disability Visability edited by Alice Wong

Despite being disabled myself I also realised in 2020 that my bookshelf was seriously lacking in books by disabled authors, and out of that was born my Books by Disabled Authors series that I've had a lot of fun writing this year. 9 out of 50 books I read this year were by disabled authors and one of the standouts was Disability Visibility, an anthology put together by disability rights activist Alice Wong. This books honours and spotlights the everyday disabled people, rather than the few that get highlighted regularly across the media, it gives a voice to the unheard. It highlights the discrimination disabled people face and celebrates our community, and is perhaps the best snapshot of our community that I've seen and read so far.

The Pretty One by Keah Brown

Another disabled author next and this one is from the creator of the #DisabledAndCute hashtag, Keah Brown. This book is a gathering of personal essays on topics that matter most to Keah as a black disabled woman. It's raw and conversational and it really felt like a safe space to me, particularly when she discussed still struggling with internalised ableism. As a disabled person it was so empowering to read that others shared my struggle and for non-disabled people I think this is a really important insight into the nuances and intersections of disability. 

Sitting Pretty by Rebekah Taussig

The final book on my list by a disabled author is by writer, teacher, advocate and creator of the @sitting_pretty Instagram account, Rebekah Taussig. Her debut book is truly an extension of her popular Instagram and she explores many themes ranging from love to kindness. My copy is absolutely littered in post it notes where I have marked important pages or quotes, which is a sure sign to me that this books deserves a place on this list. I have never related to a book as much as I did this and I found myself nodding along the whole time, she really did a brilliant job of sharing a snapshot of her life as a disabled woman.

Limitless by Tim Peake

Now, there are many space related books that could have made their way on to this list but in the end I gave the slot to one of my more recent reads, Limitless by British astronaut Tim Peake. I remember following Tim's journey to the International Space Station in 2015, the buzz around it was just incredible, with him being only the second person to wear the United Kingdom flag in space. I consumed his second book, Ask An Astronaut, in one sitting so when I knew he was finally releasing an autobiography I was eager to pick it up. I really knew very little of his career prior to becoming an astronaut so it was fascinating to learn that he hadn't had dreams of going into space as a child, his career just naturally led him to where he ended up. This was such a different autobiography to the American ones I'd been reading previously, because it is much harder to become an astronaut when you are from the UK. Seats on spaceflights are prioritised to the countries that financially contribute the most to the International Space Station and spaceflight in general, with that mostly being the USA and Russia, so Tim's journey was not an easy one and it's why it was such a big deal when he did finally lift off. If you're a space fan like me then this is surely a must read!

So, they are my top 10 books of 2020! Now I know just how quick I can read when I love a book I'll definitely be upping my reading goal for 2021, right now I'm hoping to read 75 books, so we'll see how I do with that. I'd love to hear about the best books you've read this year, I'm always looking for more to add to my wishlist!

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