The Right To Choose and Live

Less than a year after new laws came into force to give people in Northern Ireland access to abortion services, the Democratic Unionist Party (via a private member’s bill brought by Paul Givan) has proposed a new law to prevent abortions being carried out in cases of non-fatal disabilities.

It’s often assumed that disabled people all feel the same way about abortion: that we see it as an existential threat and proof of society’s prejudice against us. What’s often forgotten is that disabled people also have abortions – or need them, and aren’t able to access them. I have great respect for my comrades in disability activism who argue on both sides of this issue. Unlike many politicians, as disabled people, what we have in common is that we don’t only focus on disability when it’s politically convenient.

As a disabled woman, I will always be pro-choice. It’s a line in the sand for me precisely because I have had so many experiences in which my bodily autonomy has been eroded. And I think the appropriate response to people feeling they need to have an abortion because their child will be disabled is to actually create a society in which disabled people and our families are adequately supported. That’s a whole lot more useful than creating a climate of judgment around difficult choices which are not made in a social or political vacuum.

And at the end of it all, when we create that society where support is guaranteed? Where disabled people are valued as much as anyone else? Whether to have a baby, any baby, still needs to be the choice of the pregnant person, every time. Not Paul Givan’s choice, not the DUP’s choice, but the choice of the individual. I’m not suggesting we need to prioritise disabled people’s needs as a way of reducing the number of abortions, I’m saying we need to do it because it’s the right thing to do. And so is making abortion available on the same terms as in the rest of the UK.

The DUP’s pro-life attitude also appears to stop at the point of birth. It stops with supporting a Conservative government whose policies cause children to grow up in poverty – that’s more than one in four children in the UK today. And here’s another glaring statistic: nearly half the people living in poverty in the UK today are either disabled, or live with a disabled person.

Disabled people should be at the centre of conversations that affect us, and not only when we offer a politically convenient prop to ideologically motivated attacks on everyone’s rights. It has been very, very noticeable when individual politicians and political parties in Northern Ireland actually support disabled people’s rights, and engage substantively with disabled people’s organisations across a range of issues, and not just abortion.

Where ableist government policy leads, the general public follow, and none of this does a thing to challenge the ableism endemic in medical settings. It is a scandal that a staggering 59% of the people who have died from Covid-19 in England have been disabled adults. And despite the outcry and investigation that followed the revelation that autistic and learning disabled adults were being targeted by GPs and hospitals for DNRs since the pandemic began, it is still happening. Where is the pro-life brigade now? Mr. Givan?

At a fundamental, institutional level in this country, the disabled people who are already here are regarded as disposable. We are seen as acceptable collateral damage. We are presumably the same disabled people who are of enormous value to the DUP as political footballs before we are born. And that is what Paul Givan and the DUP leadership do not want to acknowledge. Their complicity in supporting a Conservative government, that has disastrously handled everything it has touched that affects disabled people, is what the DUP hope to distract you from with a debate about abortion.

Don’t fall for it.

(ABA)

Bleed: A Documentary

Last year I saw a call for interviewees by a local production company, Farset Films. They were making a documentary about menstruation and they wanted to talk to people of different ages and walks of life about how we experienced our periods. I noticed they were looking for a diverse group of people, and disability was specifically mentioned, so I got in touch.

A couple of them visited the house one day to look at the space and discuss what they wanted to do, and obviously my being on TPN (Total Parenteral Nutrition) added visual interest. April 2019 was an exceptionally busy, complex month for me. I had an ambitious Belfast Film Festival viewing schedule, a great deal of paperwork to complete, and multiple medical things going on. The shoot happened not long after my ADOS evaluation, and I was half-expecting to receive my autism diagnosis at therapy later that day (“So, how are you doing?” “I had a film crew in my house this morning!”), and this probably absorbed a fair bit of my anxiety about being filmed.

It was extremely nice having an all-woman crew, not just because of the subject matter (most gastroenterologists working with me have been male, so I have the ability to just eyeroll and be graphic with men about intimate health stuff). They were all lovely, very good at what they did, and fun to work with. I’ve also been very happy to see their use of inclusive language in promoting the film: not only women menstruate, and people of all genders need to know what it means in our lives.

On the day of filming, it was fascinating to watch them setting up and to test the lighting and so forth, and as the combination of my health and my periods was the focus of our discussion, they got some shots of Remco’s storage system for the piles and piles of medical equipment that had taken over our hall. I also showed them the Hickman line site, because I’m aware of the fear and ignorance around artificial feeding of all kinds, and wanted to dispel that a little on screen.

I’d forgotten how much the crew had liked the house until I watched the documentary tonight, and saw the shots of our staircase wall, covered in family photographs spanning over a century, and some of our collection of weird little ornaments, covered in dust. And to my utter delight, as I had no memory of what she had been up to during the shoot, there’s a moment where Polly is seen on my lap.

Bleed was directed by Lisa Keogh, produced by Muireann McGinty, with Eileen McClory as DOP.

On Representation

Discussions about representation in speculative fiction are as frequent as our heads of state lying. To those on the inside it appears that for each two steps forward, there is another step backwards. At least. With each new group of readers, which each new media interest, the same questions about legitimacy crop up. Minorities within fandom still have to consistently argue for their turf, which takes away energy that could be used to create, and enjoy. There are inroads being made – Fiyah is doing pretty well, and bringing a spark of hope and positivity to Black spec-fic. On the other hand, Sword & Soul founding father George R. Saunders passed away without fandom noticing for months.

There’s still work to be done. It’s even more difficult when the undermining of representation, the questioning of own voices’ legitimacy, come from the inside: gatekeeping is is done by those within the POC, queer, disabled, etc communities, and while you can understand the motives, the effects of it are devastating. Own voices are silenced, and may not dare speak again.

Firstly, there’s that word ‘Problematic’. Your work being deemed Problematic, or yourself being labelled so, can get you ‘cancelled’ when it’s attached to you by the community’s taste makers. Of course, the use of ‘Problematic’ is problematic. It takes all nuance out of any argument. The label ‘Problematic’ can (and will) be applied to anyone from Marion Zimmer Bradley to someone who made a clumsy remark. The same goes for representation: between “perfect representation” and “bad representation” there are various shades of grey. Too often, anything not perfect is deemed ‘Problematic’, the perfect is made the enemy of the good. This comes, like so much else, from a place of real hurt. As marginalised readers, we’ve had a lifetime of not seeing ourselves much, or at all, in the fiction we love. This can lead us to place outsized expectations on any one work, so that a single author writing about one facet of experience is crucified for the fact it does not, and cannot, be all things to all readers.

Then, of course, there’s the word ‘Community’ itself. It’s become clearer that there’s no such thing as a homogenous spec-fic community. At best, it’s a large collection of overlapping clusters, cliques, special interests and alliances. When you talk about disability representation, the scope of what we understand as ‘disability’ is vast. Someone who is paraplegic may not recognise themselves in a story in which the protagonist has a personality disorder. And even when narrowing it down, one person’s experience with autism, for example is not the same as another person’s. Representation can’t be ‘one size fits all’, and this unfortunately isn’t always acknowledged or accepted. So, while ‘Community’ may be a useful shorthand, its limitations need to be understood.

There have been instances of autistic people castigating “autism moms” for both actual and perceived instances of them speaking over autistics, within and outside of the community. Yet, middle-aged women with autistic children are a huge, growing category of people being diagnosed themselves. Also, it has been noticed that people who have a real affinity with autistic people turn out to have that affinity for a reason. Many autistic people go most of a lifetime without our autism being recognised. This plays really messily with the anti-self-diagnosis movement, as you can imagine, though the waiting list for getting a diagnosis is up to 4 years. That is, if you can get yourself onto that waiting list.

With gatekeeping usually comes authenticity-policing in fiction: is the author writing from their own experience? Are they themselves queer or disabled? Are they disabled enough? There are reasons why seemingly straight authors write queer fiction. They may be in a happy straight relationship but bisexual, or they may not be ready to be out, or to be out may be compromise their safety or wellbeing. It’s not the reader’s prerogative to demand the author share their sexual resume or their inner thoughts. Neither is it up to the reader to demand details about an author’s disability. We ourselves wouldn’t want to tell any non-disabled person that they can’t write about disabled characters.

We’ve made a point of writing Ymke, in The Red Man and Others, as a disabled young woman. The stories are not about her disability, but are subtly informed by it. Would someone come up to us and ask: “Well, Ymke’s got hip dysplasia. Does either of you have it?” Then, well, no. Does this automatically make us and the stories inauthentic? Angeline sometimes uses a wheelchair, and some of her experience has been useful in writing Ymke. But does the writer need to know this? We decided to make Ymke and Kaila a couple; how far should we justify this with our own dance card?

You want to have characters that are disabled (or queer, or POC, or…) without this automatically shunting your book to the disabled (or queer, POC, etc) shelf, only visited by disabled (queer, POC, etc) folk. We believe that they should be recognised as part of the fabric of society, not merely its margins. Diversity should be the norm instead of an exception. For that, writers in general need to populate their stories with a diverse cast, on all levels, from protagonists to bit players.

That undoubtedly will lead to a lot of bad representation, and we’re sure that there’ll be harmful stuff. That’s a given; the communities (such as they are) work all the time to counteract the fall-out of bad representation and the distorted image it gives of disability, queerness or POC. This, however, is because there’s just not enough of it, or not enough of it is visible. If the one big book from a big publisher with a trans character is written from a place of ignorance or prejudice, then that’s colouring the audience’s view on transgender issues. If it’s one of several books with trans protagonists, then its harmful impact will be reduced by context, and more importantly, those other books will shine a more insightful light on the subject.

What we usually get though is mixed representation: things that work in some ways but not in others. The TV series Atypical is a great example of this. A recent Guardian review highlights that Sam is less a fully-realised character than “a human whiteboard illustrating the triad of impairments”, compared to how engaging and individual his sister Casey is. Yet, it manages to put across a lot of ideas about what the neurodiversity movement is trying to achieve. We are going through such a shift at the moment in the way that autism is portrayed, that good representation often by necessity builds on bad and mixed representation. It would be nice to leapfrog straight to the good stuff, but that’s apparently not how it works.

We feel one of the goals in campaigning for better representation actually is to get to an environment in which people who aren’t like you can write about people like you, without fucking it up. We, disabled writers for example, are never going to be able to be the only storytellers about ourselves. Of course, where we are now, the immediate need is for agents and publishers to prioritise own voices, which is long due. That’s one step that shouldn’t be leapfrogged, lest you end up with the entirely ignorant writer who becomes an authority by default.

In our book, and the stories we’re currently writing, Ymke falls in love with the fighter Kaila. Kaila has been inspired by a woman Remco worked with, who came from Turkey, was very short, but had been in the army and could take care of herself. But here is where representation becomes a really fine line. We don’t have personal experience with racism, as Kaila would have. However, Remco is an immigrant in a country increasingly hostile, and has his fair share of xenophobic violence, ‘othering’, micro-aggression. These adjacent experiences are very useful in writing about Kaila.

There should be some kind of balance between encouraging more and better representation, giving authors room to grow, and acknowledging that we often do not know the full truths of people’s identities and how they relate to their own work. So,

let’s get off the hamster wheel of policing authenticity. We end up shining a bigger spotlight on the bad stuff than it deserves, and the good stuff deserves the bulk of our energy.

Chariots of Ire

Tell me, Oh Muse, of that ingenious hero who traveled far and wide.”
Homer – The Odyssey

The Dungeons & Dragons roleplaying game, much like Fantasy, is supposed to be about adventure, ingenuity, and working together to overcome obstacles. And yet, there was so much opposition to the idea of battle wheelchairs. Because they’d be unrealistic. Or cumbersome. Or any other reason you can imagine for disabled characters to be excluded from Fantasy. But, in a world of elves, trolls and -indeed- dragons, how unrealistic is disability, actually?

Sure, a powerful enough wizard could magic any disability away, but would your character have access to that magic? And if you’ve got that wizard at hand, why not also solve whatever quest your DM has set? A magical ring needs to be dumped into a volcano in the badlands? How about a transportation spell, roll your D20, and with a bit of luck you can put your character sheets away again before you’ve even set off. Then again, that wouldn’t be much fun, right? So, if you’ve got Fantasy realms with hobbits schlepping through marshes, then your party can also deal with a wheelchair and the disability that requires it – or whichever disability your player would like to be represented with.

Over the last decade we were lucky to see quite a bit of disability representation in Game of Thrones. It’s done -eh- less well in other areas, but there is that at least. Anyone hoping it would set a trend in representation will have been disappointed though; in The Witcher, we’re back to the cliché of disabled character who wants nothing more than to be cured, gets her wish and only then can be a major character. No hanky-panky with our freezer-sized hero if she’s not conventionally hot! Does The Witcher represent a look back in time, an artefact of it having been written decades ago? Or was GoTs disability representation not progressiveness, but instead – like its standard rape and objectification of women – part and parcel of Westeros’s grimdark identity?

Part of the answer to these questions is that every story’s resonance is at least partly created by its wider cultural context, and it helps create our collective culture in its turn. The more popular a show or book, the bigger its cultural footprint, and the more it should move the needle. We cannot expect one book or one series to be everything to everyone. Nor – as shown by the widespread “huh?” reaction to disabled people delighted by GoT’s finale – can we expect all of the audience to catch up at once. We can only hope that creative teams at least consider their impact, and realise their potential for disabled inclusivity. And disability is not a monolith, or a single item to tick off a checklist. Inclusion is the beginning, not the end, and should be as varied as disability itself, in all its physical, intellectual, mental health and social communication dimensions.

We’ve moved – through decades of dedicated activism – from the medical model of disability to the social model, in which disability is understood not as being caused by an impairment, but by society’s failure to accommodate us. This idea too is a beginning, not the end of a cultural discussion, and perhaps neurodivergent conditions illustrate this most of all. The social model of disability cannot account for all disabled experience, and for many disabilities; some of the disabilities we ourselves have would suck even in the most accommodating and understanding society, and some of them we’d want cured if we could.

The point, however, is that there is a persistent focus in fiction on the cure (or lack thereof), and it still is the obvious default in how most fiction about disability (in Fantasy and other genres) is played out. It’s an incredibly mainstream idea: disability becomes the story, instead of part of the character’s make-up. This is why disability activists picketed the premiere of the film adaptation of Me Before You (the “better dead than disabled” romance movie): unless a reader/viewer is actively seeking out a wider range of perspectives, that’s usually what they will be served when they consume content with disabled characters. That, also, is the context in which people who aren’t conscious of knowing disabled people in their own lives form opinions about disability. It drives how they vote, how they think and talk about disability, and how they teach their children about interacting with disabled people: disability is a cross that we have to bear, or are nailed to, and for that we are to be pitied, or santified if we show enough courage in holding up.

Disabled characters in fiction often are looking for a cure or have no hope of one. That’s their story. For the heroes a cure will bring salvation, for the villains a cure would come with a heavy price for others. And if there is no cure, then disability becomes the cause for revenge on society for the villains, and time for either bearing up heroically or fading inspirationally into the night, like in Me Before You, but also The Diving Bell And The Butterfly, The Sea Inside, and half a dozen Stephen Hawking biographies.

And that’s the context in which The Witcher was written, both as a book series and, well into the 21st century, a TV adaptation. Writers had every opportunity to do something different, but they chose not to innovate. There definitely is a story to be told about a woman who’s told she can’t become a powerful witch without being abled and conventionally beautiful. It shouldn’t be the most prominent story, though: it’s been done to death – much like disabled people in the real world. This is why we’d love to see more stories where our lives, with our disabilities, are shown as worth living.

You can’t be what you can’t see. If there are no characters with disabilities, in various forms in different phases of their lives, you not only lack representation, you also lack examples. Not having had this ourselves has had an impact for Angeline in particular, and it was difficult to envison herself as being older, with disabilities. Seeing realistic disabled characters with succesful, or at least normal lives would have been a comfort and, perhaps, taken away some fear of death. If the only stories with young people with disabilities are about them languishing or dying, you don’t really believe middle age exists for you.

As it is, while stories about cures, or the lack thereof, are a dime a dozen, you’ve got to look hard for stories that reflect the life someone with a disability actually has. We find it important for stories to exist, and to be widely read and viewed, whose message is: “You can still lead a good life with disabilities; you can still self-actualise; you can have friends and lovers and family and a job. You can still be a witch, if that’s your genre.” Just imagine The Witcher‘s Yennefer trying to magic away her disability, to then decide: “You know what? Not at this price! I’ll accept myself as I am, and so can you!” Her newly found self-acceptance is what’s needed to unlock her magical potential, and it’s her self-assurance, her sass and her personality that makes her attractive to The Witcher, not her t & a. Attractive and worth spending time with, for both Witcher and audience.

It’s getting better. Slowly. Very slowly. And encouragingly, some of that storytelling is on Netflix too, though it tends to be small moments in ensemble dramas, and that glorious biographical dramedy exception that was Special. But it shouldn’t be special. Decent disability representation should be the norm.

In our stories, we try to include elements of disability that we are familiar with ourselves, or from our surroundings. They may inform the characters, but they won’t inform the stories; disability won’t be the story. In the titular story of The Red Man and Others Ymke lives on a farm and has badly treated hip dysplasia, much like one of our relatives, who worked as a maid on a farm as a teenager. We imagine that there’s magic in her world (our S & S has been rather light on S) but it’s not available to her to fix her. There’s not much beyond a willow bark extract from the hedge witch for her. That doesn’t stop her from going forwards, limping at times, having adventures, loving and being loved. We foresee a future in which her disability will get worse, and she’ll have to adjust. We’d like to imagine the world around her being one in which she can still maintain herself and thrive.

We’ll make sure of that!

You can buy these excellent wheelchair miniatures from Strata Miniatures. 25% of your purchase will be donated to ehlers-danlos.org