03/09/2020

5 Books To Read By Disabled Authors

I can confidently say that the content I read online is diverse when it comes to gender, sexuality, race, disability etc but it was a few months ago when I realised that my bookshelf wasn't quite mirroring the writing I was consuming online. My bookshelf was very white, very heterosexual and cisgender and very non-disabled. Thanks to the Black Lives Matter movement my Instagram feed became a mini library of book recommendations, and I've slowly been working on reading more books that represent my sexuality more, but the one thing that I was missing were books by disabled authors. The biggest part of my identity was no where to be seen. So, I hunted around and asked for recommendations on Twitter and probably bought a few too many books, and today I wanted to share a few of my favourites that I've read so far. For so long the only books centred around disability out there were biographies that relied on inspiration porn for sales, so I invite you all to diversify your bookshelf today and invite disabled stories into your lives that celebrate disability, highlight discrimination and showcase us as multifaceted beings. 



Unbroken: 13 Stories Starring Disabled Teens edited by Marieke Nijkamp

This book has been on my wishlist ever since it first came out, up until I discovered it the only books I'd read by disabled authors had been non-fiction, I had never read a story featuring a disabled person, and certainly not a story where the character isn't just a plot device. This anthology features 13 talented disabled writers who are reclaiming the narrative around disability, every short story is unique from the next and not only explores disability but also race, gender and sexuality. This book is everything I have ever wanted to read as a disabled, and queer, person. The standouts for me were The Long Road by Heidi Heilig which beautifully covers the journey towards acceptance, Per Aspera Ad Astra by Katherine Locke that centres a disabled teen as the hero of the story, constantly being encouraged along the way. Dear Nora James, You Know Nothing About Love by Dhonielle Clayton also captured my heart and really exhibited the kind of interaction I always hope to have as a disabled person, someone offering me the support I need without a massive fanfare or having to request it. Every story gripped me though and I truly think this is such an important book for anyone of any age to be reading, it re-frames everything we are wrongly taught about disability and shows the world that we are not a monolith. 

Crippled by Frances Ryan

I believe Crippled was actually the first book I ever read by a disabled person, and it completely consumed me. Frances Ryan is a Guardian columnist and all round badass disabled woman who I've actually had the pleasure of working with in the past. Her work documenting the continued discrimination against disabled people in the UK has opened so many people's eyes and in particular it has shed light on how the government and media have made our lives a living hell in recent years. This book is a hard read, and potentially a triggering read for some disabled people, but I think it is a necessary read for non-disabled people in particular. There is so much that goes on behind the scenes in this country, the media let it stay silent and the government are continuous in their attacks against us, and this book details all of that in uncomfortable detail. And it is meant to be uncomfortable, you are meant to be disturbed by the facts and stories laid out on these pages, because it is disturbing. This book is nothing less than essential reading.



The Pretty One by Keah Brown

Keah Brown first came on to my radar when she created the #DisabledAndCute hashtag in 2017, a hashtag that I now frequently use across my Instagram. She not only created a hashtag but she created a movement of people reclaiming their stories, she gave people the power to say 'no, I'm not cute despite being disabled, I'm disabled and cute'. This book has been long awaited ever since then and it really did not disappoint. It's broken up into easy to digest essays that cover everything from Keah's love of music to how she learnt to tie a ponytail. The writing is raw and it feels like a conversation with a friend, she is honest all the time, even if that means admitting struggles with internalised ableism. I appreciated her honesty so much because even though I am the most empowered I've ever been, I still struggle with my disability and we don't have enough conversations in a safe space about that. My copy of the book is littered with post it notes marking pages where I have just wanted to clap and cheer at her wisdom. This book also importantly covers Keah's identity as a black disabled woman and how each intersects with the other, making this a doubly important read given that racism is a massive issue within the disability community. I am the first to admit that I do not follow as many black disabled people as I would like to and we all have a responsibility to change that and make our spaces as inclusive as possible, and if you're looking for a place to start, let it be this book. 

Disability Visibility edited by Alice Wong

This was another book that I had been impatiently awaiting, with it being top of my wishlist ahead of it's release in June of this year. Alice Wong is an incredibly important voice within the disability community and I've had the pleasure of being on their podcast previously, which is a part of the Disability Visibility Project that Alice created to diversify and lift up disabled voices. There is one line in her introduction to the book that really sums up one of her aims perfectly for me, "I wanted to see more stories about everyday people rather than the usual 'very important people' duly mentioned at each ADA anniversary". Alice wanted to honour the past whilst sharing more stories about the present and this is something that really resonates with me. In both the US and the UK we are guilty of sharing the same disabled voices again and again, both within our community itself and in mainstream media, and what Alice has created really stands to combat that, with this book being an extension of her original work. It really is hard for me to pick any standout pieces from this anthology because every piece highlights something new and spoke to me in such unique ways but it was Harriet McBryde Johnson's chilling opening account about her interaction with Peter Singer, a man who believed that parents should be able to euthanise their disabled children, that set the tone for the book. Not many things shock me these days but this was a stark reminder that there are people who walk among us who truly believe the world would be better off without disabled people. This book strikes the balance between highlighting discrimination and celebrating disability culture perfectly, giving readers a small snapshot of our ignored community. 



Stim: An Autistic Anthology edited by Lizzie Huxley-Jones

This final book is also newly published and was a welcome edition to my bookshelf as the first book I've read that centres autism. It's 2020 and yet the best representation autistic people are getting are Sheldon Cooper types that only further sustain the stigma and idea that autism is something that only affects white men. This stunning anthology put together by Lizzie Huxley-Jones, an autistic writer and editor, serves to present a wider range of autistic experiences. The content comes in many forms as well, everything from essays to fiction and even art, showcasing each person's talents and stories. The freedom given to deliver each person's content can be seen across every page and this in itself I think really breaks down this neurotypical world we live in, showing people that books don't have to just be pages and pages of thick text. The Lost Mothers by Rachael Lucas sticks in my mind when I think about this collection, she shared such an important story of how she and her children all followed their journey towards their autism diagnoses together and how they empowered each other to make choices that were most comfortable for them, rather than the choices that were most comfortable for society. I think within the disability community there is still nowhere near enough representation when it comes to autistic voices, we all have gaps in our knowledge and I know for me this book has helped me to question what I can do better when it comes to passing the microphone to neurodiverse voices. 

I ask you to take the opportunity after reading this post to recognise the gaps in your bookshelf, to explore who is missing and work to fill those gaps and extend your knowledge. Disabled voices must be heard, we all have a responsibility to push forward progress and if you don't know where to start, let these books be your first step. 

20/08/2020

A Love Letter To My Stretch Marks

Growing up I believed that stretch marks were something you only got during pregnancy, since that was the only representation I saw of them. Even then it was in the form of adverts for magic creams and oils that would supposedly get rid of them, so not only did I think that I was abnormal for having stretch marks all across my body as a teenager, but that I should also be slathering myself in every product going to try and make them disappear. As you can imagine, I didn't have a very healthy relationship with my stretch marks for a while as a result. The ones in the more 'normal' places were easier to accept than the ones that seemed to be on parts of my body that no one else had them on. My condition, Marfan Syndrome, causes stretch marks even when there hasn't been any major bodily change and so they pop up on me everywhere, I even spotted one on the side of my face recently. For so long I felt abnormal but somewhere along the way I began to love them.

It feels like there has been a positive shift in recent years when it comes to stretch marks, at first I began noticing less and less adverts for creams and oils that claimed to reduce the appearance of them. After that I started seeing models with brands such as ASOS who hadn't had their stretch marks photoshopped out, for me my epiphany came before these changes but seeing them become more visible over the years has certainly helped me along in my journey. 

It was learning to love the stretch marks on my arms that was the turning point for me. Across social media I was seeing more body types than ever before, but I still wasn't seeing anyone with the kind of stretch marks I had. I still felt like I almost didn't quite fit in, even amongst all the body positive instagrammers. My stretch marks aren't totally the product of weight gain or body changes, for me they just pop up whenever and wherever they fancy due to my genetic condition. So, whilst it was incredible to see so many people embrace their bodies, I still felt like I was missing from these conversations. I was looking for acceptance from the body positive community, when actually all I needed was acceptance from myself. 

I'm not sure when but one day I just began to see my stripes as nothing less than beautiful. I was amazed by what my body could create, I felt like a canvas and my stretch marks were the paint. I was and still am fascinated by the textures of my stretch marks and the way they all differ in size and shape. I love them in the same way I love my scars, for me they tell a story. There are parts of my body that I fall in and out of love with but the way I feel about my stretch marks will never change now. 

11/08/2020

Don't Forget Us | Disabled People's Thoughts On Returning To Theatre

It's safe to say that accessibility in the theatre industry before Covid-19 wasn't great, however disabled people stand to struggle even more to access the arts in this new world we find ourselves in. As the industry starts to have conversations about reopening, social distancing and new guidelines it's become clear that the 'new normal' might end up shutting disabled people out of theatres even more than in previous times. We got our first glimpse of what that new normal might look like at the recent pilot test at The London Palladium. It's evident that theatres cannot open in the same way as before, new guidelines and safety measures are needed, but as a disabled person it's also obvious to me that we should not allow Covid-19 to become a free pass to exclude and alienate. The risk of smaller budgets also presents the possibility that access improvements and accessible performances may also suffer, since they are often low down on the priority list anyway. Accessibility in the theatre industry took a long time to get to this point and we are still nowhere near where we need to be, and so it's no surprise that I am not the only disabled person out there concerned about what the future looks like for us.

I want to start off by saying that I want to tackle this subject as sensitively as possible, the theatre industry is struggling a lot right now and that shouldn't be disregarded. We're facing theatres shutting and jobs lost. However, I don't believe this means we shouldn't have these conversations about how to make the industry more accessible, more inclusive and more diverse. In fact, I think it's more important than ever to be having these conversations. There have been so many important discussions in recent months about where the industry is failing and I believe theatres have an opportunity in this time to really examine where things could be improving. 

A theatre's auditorium, there are red seats and gold details inside. There is text over the image which reads 'Disabled People's Thoughts On Returning To Theatre'.

The recent pilot test at The London Palladium revealed to us what the future might look like for theatres. Whilst Andrew Lloyd Webber has made it clear that social distancing is simply not a financially viable option for most theatres I think it's probable that some of the changes such as increased queuing and one way systems are likely to be in place in the future, alongside wearing a face covering. For myself and others this throws up some concerns, and for me one of these is whether theatres have even recognised that new guidelines and restrictions will be an issue for disabled people. For example, the need to queue for longer is potentially going to reveal patrons that pre-covid might not have needed the help of a theatre's access team, but in this new world, they will. I worry that without the kind of evidence that access teams often require, proof of disability benefits for example, help will be denied. Invisible disabilities are already routinely disbelieved and I think Covid-19 has opened a door for this kind of discrimination to thrive. Will we be made to submit evidence to prove why we can't wear a face mask or queue? 

I spoke to Rebekah, who attempted to buy tickets for the Palladium pilot test, including the companion tickets she required. But, when they sent her just one ticket they said they were unable to add the additional tickets she needed due to the show being sold out, despite her being a member of LW Theatre's access scheme and explaining her access needs. Rebekah told me, "I completely understand it's just a pilot but it doesn't fill me with hope for an access friendly future". When buying tickets for the socially distanced outdoor performance of Jesus Christ Superstar at the Regent's Park Open Air Theatre she also ran into trouble with being able to access the usually discounted companion ticket she needed. She was unable to purchase a discounted ticket for the essential companion she required. This has been a fear of mine for a while, that with tight budgets reduced price access tickets will be removed as an option. To a non-disabled person these tickets might just look like a cheap seat, but for a disabled person they can be the difference between attending a show or not. 

: I really hope that something positive that'll emerge from the pandemic and its impact on the arts is that the industry will spend more time and energy thinking about their access - in all its forms and will consult more on how it can be made better (sadly but not perhaps surprisingly I've seen NO discussions about access except in terms of ticket pricing).


Whilst some theatres have cancelled performances for the rest of the year we are beginning to see some regional theatres prepare for a socially distanced pantomime season, and just this week The Bridge Theatre announced plans to reopen this September. One of my concerns, particularly as a wheelchair user, is that access seating will be heavily reduced in line with a change in seat capacity, when we already have far less choice and options than others. This is something that is already happening as well, The Crucible Theatre in Sheffield is hosting the World Snooker Championship and was due to have an audience before government guidelines changed. A look at the planned seating arrangements shows that the wheelchair space capacity would go from 10 spaces to 3 and 4 spaces across the different days. Sure, this might be in line with how much the rest of the seating has been reduced, but is it really fair to reduce wheelchair spaces in the same way as other seats when we already have so few to begin with? It worries me that this could become the norm if theatres do have to open with a reduced capacity. It is not equality to reduce seating in the same way for access seats when we start with so much fewer. For me, issues like this could be ironed out if theatres had panels of disabled people to assess new guidelines like these with.

I have Crohn’s so quick toilet accessibility is a necessity, at the Palladium pilot test it was two people maximum so I can’t be being able to get in the toilet quickly. If I’m at the front of a section and there’s a one way system I have to a long way to reach a toilet and time-wise that wouldn’t work.


There are also concerns from visually impaired people that the way they interact with theatre will dramatically change. Touch tours are such an important part of performances for those living with a visual impairment, they allow people to make up a picture in their mind of what a set and stage look like. But, in a Covid-19 world where we no longer touch things without thought, will these still go ahead? I spoke to a few different people who shared their concerns with me. Chloe, a visually impaired disability blogger told me, "touch tours are sparsely available, yet after the pandemic they won't exist. I completely understand why, but it's important to bare in mind that this is a vital part of theatre when you have limited sight." I also spoke to Holly, another visually impaired blogger and writer who expressed similar concerns, "audio described performances were few and far between in normal times, but I'm worried they'll stop altogether now. And what about cleaning of headsets?". Melanie Sharpe, the CEO of Stagetext who are a charity that provide captioning and live subtitling in theatres also shares Holly's concerns about the availability of accessible performances once theatres reopen.

"Our main fear is that access may once again be pushed to the back of the list once theatres re-open. Theatres are making lots of difficult decisions, with more to come over the coming months, they'll be working on even tighter budgets than ever and we fully understand how difficult this time has been. However, our charity has been working for 20 years to ensure that captioning and access for d/Deaf, deafened, and hard of hearing audiences becomes a normality and is ingrained as an essential part of a production, and we'd hate to see all this work being left behind due to financial restraints. We hope that the £1.5 billion support package that the Government has announced will be used to ensure that access in all its forms is still widely available, that safety measures don't exclude d/Deaf and Disabled audiences and that when we're finally able to get back into venues the access requirements of customers will have been considered." - Melanie Sharpe, CEO of Stagetext

I really do hope that when theatres return, they do so with a greater sense of understanding of the benefits of online theatre content. Many disabled people are unable to see a live production, and series like National Theatre At Home and the Old Vic’s In Camera shows have opened theatre up to people who may otherwise have been unable to experience it.   There needs to be an industry-wide discussion around the use of online content in the future, but also a greater conversation around accessibility. It was disappointing to see a lot of online theatre during lockdown be released without captions, when these theatres would consider access in their physical venues. There needs to be parity between the two, so I really hope access to theatre is improved off the back of this situation.


I also spoke to Lucy Garland, the Co-Artistic Director of Frozen Light who are a theatre company that create multi-sensory performances for audiences with profound and multiple learning disabilities (PMLD). They work with small audiences of about 6 to enable a close up sensory experience, I talked to them about what theatre will look like for them in the future. 

"Many of our audience members with PMLD will be shielding for a long time and we are currently working out ways that we can continue to reach them. We will be creating a shielding offer for our next show 2065 which will allow our shielding audiences to experience the show from the safety and comfort of their own homes. We have been exploring working in a number of different mediums to continue to fight for audiences with PMLD's right to accessible culture with the aim of having a live offer when it is safe to do so." - Lucy Garland, Co-Artistic Director of Frozen Light

Frozen Light also reached out to their audience panel to ask them the very same questions I've been exploring in this post and they expressed concerns around a lack of clear guidance and consideration for those shielding from the government, how access to a sensory performance may change due to Covid-19 and the worry of placing trust in a venue to keep them safe. I think this is one side of theatre that is routinely ignored, and in a world where touch is so restricted now, there are obvious problems for a sensory theatre company like this. I would love to see more theatres having these conversations with their disabled patrons to ask them what they'd need to return to theatre and how they can gain their trust. Accessibility in the theatre industry will only improve when we recognise that theatre truly is for everyone. 



There's one thing that kept coming up time and time again when I spoke to patrons, charities and theatre companies and that is how much more accessible theatre has become during lockdown. Theatre's shutting their doors forced them to become a little more creative in sharing their art and as a result we have been treated to countless online performances, including archived footage and shows written and put together whilst in lockdown. Suddenly theatre became accessible to a whole new group of people who have historically been shut out of the industry time and time again. I've watched shows that I wasn't able to see in person due to poor access and I've watched countless concerts that undoubtedly would have been held in inaccessible bars and performance spaces pre-Covid. The world has become so much more accessible, but the worry now is that this will change again once theatre returns to normal. What myself and many others would like to see is online viewing become the norm, we already have the wonder that is National Theatre Live, but even for that you have to travel to a cinema. Accessibility is something we should always be improving on, so it would feel really backwards to completely remove this option now.

Eleanor Dewar summed all of this up perfectly in a recent post for A Younger Theatre where she talked about not wanting things to return to normal, to return to the inaccessibility. Like many others she has found that theatre has become a lot more accessible to her in recent months. 

"One of the positives that we have seen over the last few months, and what we would like to see continue, is the increase in online productions being made available from theatres. Many of our users have told us they've seen more theatre in the last couple of months than they have over the last couple of years, thanks to our work subtitling the 'National Theatre at Home' and 'The Shows Must Go On' as just two examples. There is a huge audience that are often restricted by in-venue access and the journey to get there, so it would be great to see venues continue to make work available online, as well as in-person." - Melanie Sharpe, CEO of Stagetext

As a theatre fan with a chronic and often invisible illness, my concern is whether my less v visible needs will be met. One of the main issues I face, and faced even before the pandemic, was finding somewhere inside the building to sit down, before doors open for the audience to take their seats for the performance. Seats in these communal areas were hard to come by already, and I imagine that necessary social distancing measures will mean places to sit will become even less readily available.


Another issue that was highlighted recently in The Stage is that we will see even less disability representation both on and off stage in the future. Whilst shielding might have technically ended, many disabled people have taken the decision into their own hands and we will see some shielding until we have a viable vaccine available. Covid-19 could potentially erase so much of the progress we have made in recent years, both in the sense of a decrease in hiring disabled actors and funds not being available to make the industry more accessible. It saddens me that we had the opportunity to find and hire disabled performers for the incredible digital performances we have seen happen recently, and yet no efforts seem to have been made to find them. Disabled actors exist, the industry just chooses to ignore them. We talk about increasing diversity in the industry, but this rarely seems to extend to disabled people. Daisy Higman told me, "I'm worried that we'll seen even less work by and starring disabled creatives. Representation matters to me. I don't want to see non-disabled narratives again and again".  

Ethan McKenna also wrote a post for Access For Us about what it's like working within the industry when you're visually impaired, he told me, "I'm scared about how it's already hard trying to find theatres willing to provide accessibility accommodations for workers and with social distancing, signs and systems already being inaccessible for visually impaired people, it's going to make it even harder to find work safely!'.

I have severe anxiety and depression, I found going to the theatre before this time hard so I think I’ll be finding it even harder now! One thing I’m particularly worried about is perhaps not being allowed to leave my seat until an interval, I’m not sure how any of it will work but I’m guessing the theatres will try and limit how much people are moving around during the performance. A one way system would worry me if it was not very clear as I’d worry that I’d go the wrong way; if it was clear then I think I’d feel less worried as then I’d know that I’m almost certainly guaranteed not to break social distancing .


Undoubtedly there are countless conversations going on behind the scenes at the moment about how as an industry we can rebuild and reopen, and it is so important to me and many others that disabled people are not forgotten in this process. We have so much time right now to be talking, asking questions, researching what we can do better and it would be heartbreaking if we didn't grab that opportunity. As I always say, we simply just want a place at the table. So many of the issues outlined in this piece by myself and others are ones that are easily solvable by just talking to disabled people and asking us what we need. Even if theatre doesn't return until next year, that is all the more reason to be having this conversation now whilst we can still iron out problems. I want to see the theatre industry bounce back as much as anyone, but not if we are having to sacrifice accessibility and disabled people's needs along the way. 
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