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Why Self-Identification is Vital for Disability Justice

This month, the Society of Authors launched a new award. The Authors with Disabilities and Chronic Illnesses (ADCI) Prize offers a disabled or chronically ill author a top prize of £1000 for a novel — which must also include a disabled or chronically ill character — with two runners-up receiving £500 each. 

Writing in The Bookseller, author and founder Penny Batchelor said:

“Whilst all authors other than those at the very top are affected by declining incomes, disabled and chronically ill people are amongst those who struggle the most.”

The new prize is meant to make a contribution toward correcting this problem, and many disabled writers celebrated the announcement of this new acknowledgement of our reality and our writing.

Recently, however, a particularly able-bodied furor has grown on Twitter, over the award’s entry criteria relying on self-ID.

Perhaps the most famous negative voice to have taken to social media to deride it, is actress Frances Barber, who tweeted to her 55,000 followers: “What on earth does this mean? No one ‘self identifies’ as disabled or chronically ill. They just are. Sadly so. Language matters.”.

As a disabled writer, I agree with Frances that language matters, but not in the way that she thinks.

Quite simply, self-ID is the only way to ensure that disabled and chronically ill writers won’t be discriminated against when trying to enter a literary prize. If that sounds counter-intuitive, then let me explain.

Self-ID has long been the preferred approach for the disability rights movement, for a number of reasons. The first, is that despite what many non-disabled people believe, there is no such thing as a disabled registry. As disabled people, we don’t ‘sign-up’ anywhere as disabled, so there is no official record of our disabilities.

How, then, should a disabled writer prove they are disabled?

Many suggestions online range from a statement by a doctor, to being in receipt of disability benefits. But these are discriminatory suggestions that over-burden disabled writers and would bar many from participation. This is because not all disabilities are visible, and access to healthcare, diagnosis, and benefits isn’t applied equally.

Numerous studies show that women receive diagnoses years later than men. BAME patients, and patients for whom English isn’t a first language, also struggle to access appropriate healthcare. And those who have complex illnesses but can’t afford specific tests not offered by the NHS, may very well remain undiagnosed, but nonetheless disabled.

Similarly, many of us are unable to access benefits, even with extensive statements from a doctor. In fact, a report by the UN found that the government’s treatment of disabled people was a violation of our human rights, and the DWP recently admitted that it wrongly refused disability benefits at a record rate.

This is something I know only too well. After being mostly housebound for nearly six years through disability, only in 2020 did I first start to receive PIP — and I had to take the DWP to court to get it. On top of this, although my doctors were happy to write supporting statements for me when asked, seven years on from the medical event(s) that disabled me, no doctor has ever said the words: “you’re disabled”. 

Despite my now rather numerous ‘official’ diagnoses, many of my doctors have gone to great pains to tell me not to refer to myself as disabled, as to do so is ‘giving up’.

Because of this, like many other disabled or chronically ill people, the realisation that my health conditions were no longer a ‘blip’ in a healthy person’s life, but something permanent and ongoing, wasn’t something that was handed down to me by a doctor or a diagnosis.

It came upon me slowly, over many years of trudging through the convoluted medical system, hoping to find answers.  

Yet, during the three-and-a-half years in which I was housebound, but had received no formal diagnosis, it would be difficult to argue that I wasn’t already disabled. This is a reality for thousands of other people, who are undeniably sick, undeniably disabled, but have yet to be formally diagnosed by a doctor.

Forcing disabled people to provide documentary medical evidence of a disability not only infringes on our privacy, but it also bars many of us from entry, and throws into question what qualifies as a disability.

Who decides which medical conditions make the cut? Is there an arbitrary level of suffering that must be attained before a writer can call themselves disabled?

Should writers have to submit private medical records to a panel of strangers, who will then decide — with no medical training of their own — whether or not we’re deserving?

The reality, is that this draconian approach would replicate the same situation which sees thousands of disabled people denied benefits by the DWP.

It is the perfect way to turn a prize intended to uplift disabled voices, into an obstacle course designed to reproduce the same discriminatory practices that bar us from healthcare and financial support.

The final argument from well-meaning but misinformed commenters online, is that self-ID would allow non-disabled people to claim they’re disabled, in order to access the prize. However, when there are prizes or submission callouts for LGBTQ+ writers, for instance, this same argument doesn’t apply – however we can’t ignore the fact that self-identifying has become so taboo because of those against trans rights.

Like disability, you can rarely tell if a person is a member of the LGBTQ+ community just by looking at them, yet we trust that cis-het people won’t apply for a prize that’s intended for queer writers. The alternative, would be demanding a full sexual or romantic history from self-identifying queer authors and artists, and it should be obvious why that isn’t a desirable state of affairs. [Editors note – though as a bi person our sexual histories are often demanded.]

In a similar way, disability is as impossible to prove on paper as queerness, since many disabled people are undiagnosed, don’t have access to healthcare, and are denied the benefits they’re entitled to.

While it’s possible that one or two non-disabled people may try to sneak their way onto prizes that weren’t designed for them, the alternative — requiring extensive medical or sexual histories from applicants — is far more damaging.

Ultimately, self-identifying is not synonymous with ‘faking’. If we accept self-ID as the standard for other identities, then it’s patently ridiculous for disability to somehow be exempt from the trust we give to others in the publishing world. 

Disabled people deserve a space for our talents to be recognised, and self-ID is the only fair way to get there.

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