[janet gunter]

I've learned so much about disability since becoming disabled by a mass-disabling event and by this society. In so many ways, disabled people are damned-if-we-do, damned-if-we-don't. Survival, or existence, is damnation by a deeply ableist society.

The disabled double-bind is arising strongly in many areas of life at the moment, and getting my pressure up with every email digest sent by Disabled People Against the Cuts and every article published by the essential Disability News Service.

This post is largely UK-focused, but I can see these trends emerging in “wealthy” (but unequal) countries across the globe. My spoons will only permit me to look into three areas: access to the safety net, euthanasia legislation, and what I'll call “communitarian salvation from fascism”.

Access to the safety net

This Kafkaesque, absurd story about a blind woman denied benefits because her mother helped her get to an in-person assessment on public transport seems to illustrate the point quite well. “Well if you can get to this assessment...” was the logic of the private company that denied her benefits.

The disability benefits system is by design hostile to disabled people, and specifically hostile to disabled people who are unable to work, mostly because society has been designed to exclude them. These folks get trapped in the cruelest double-bind.

The last government said they would take away benefits from 424,000 people in this double-bind. This government claims it will make an equivalent savings, but refuses to let the public know how, leading us to believe they are planning to go ahead with the proposed benefit grab. And this government is parroting (or outdoing?) the nasty Conservative rhetoric deployed against this group – reminding us, that ultimately, Labour only cares about people who can work here and now.

Norwegian author and scholar Jan Grue recently wrote that while we've mostly moved beyond a “medical model” or a personal tragedy model of disability, we've entered a troubling new ableist era:

Arguably, however, the new, socially legitimised disabled role that has emerged in recent decades regularly represented in global discourse by multinational companies’ diversity campaigns and in quadrennial advertisements for the Paralympic Games, derives from the requirements of neoliberal capitalism and is just as tightly bound to ableist values as the older disabled role.

This new role can be understood, in keeping with Tanya Titchkosky’s definition of the ‘able-disabled’ (Titchkosky, 2003, 2007) as centred on the subset of disabled people who are most likely to be able to adapt to existing social structures, particularly in terms of productivity—those who can survive employer’s tendencies to compare disabled job seekers with ‘ideal’, non-disabled workers in terms of productivity (Østerud, 2022). This is the group whose combination of resources (embodied, social and economic) is sufficient for them to compete in work life and other societal fields. This minority within the minority may benefit disproportionately from the lowering of formal barriers to participation, for example, from anti-discrimination policies in hiring and from broader implementation of universal design. But it requires them to fit narrowly into the ideals of ‘productive citizen’, that is, someone who is unburdened by familial or care obligations and who can adapt to existing structures in most respects.

I fit in this category for the moment. Being “able-disabled” comes with its own terrible double-binds. To avoid the evils of the work capability assessments described above, I am working to live, and more often than not, I can feel that my 21 hours of work are negatively affecting my chronic illness. (And potentially undermining any hopes I might have of recovery.)

The disability benefits are their own extra double damnation. For the past two years, I resisted applying for “Personal Independence Payments” (PIP) as I knew the process would be exhausting (and I have an energy-impairing condition) and both dehumanising and destructive to my fragile mental health.

But it turns out it is really expensive to be disabled, and I have watched my savings dwindle and have started to become nervous about my future, so I have subjected myself to the stress, humiliation and energy drain of the process. All the while knowing that I am more likely to be rejected than to get help.

It's worth noting here that a recent government audit of PIP revealed zero net fraud from this benefit. The sheer violence of this number is not lost on me, or any number of people hesitating to apply like I did. It's a double-bind of deepening poverty, or subjecting oneself to this neoliberal inquisition, or auto-da-fé.

Euthanasia legislation

In the first months of this new Labour government, there is a piece of legislation that seems to be getting a lot of attention. The Terminally Ill Adults (End of Life) Bill will be debated at the end of this month. I'm ashamed to say, before becoming disabled, I would have supported this without a second thought. I would have been satisfied with its proponents' talk of “safeguards” and the notion that it was only for the terminally ill. (However the actual legislative text has yet to be publicly circulated so...)

But once I started read about how euthanasia has become the fifth leading cause of death in Canada and has been used to allow disabled or chronically ill people, failed by the country's safety net, to die, I realised the horror of the mere introduction of this legislation in these times.

This against the backdrop of the dehumanisation of disabled people in accessing the safety net, but also following a global pandemic, during the height of which at least one NHS trust issued blanket “do not resuscitate” orders for disabled people. (The Covid inquiry is starting to reveal what really happened – but apparently data is still lacking on how pervasive this practice was.)

Apparently, it's not just disability activists who are shocked at the timing of this euthanasia legislation. The Guardian reports that Labour MPs feel uneasy

Among those who are deeply torn there is a strong feeling that the vote should not take place until the government can show significant improvements to the state of the NHS – or risk sending a dangerous message.

There will always be disagreement on whether euthanasia is ethical – even under the fairest and best circumstances. And there are disability campaigners who have good reason to be pro-right-to-die. There are people with chronic illnesses who want to die.

But I have to say, this double-bind hit me personally really hard when I heard about a woman with a severer form of my condition ME-CFS who went to Switzerland to die. Her final message: “there is no help”. For my condition, there has been a chronic under-investment in medical research. There has been a chronic under-investment in specialist medical care, especially for the most impacted, as came to light with the inquest into Maeve Boothby-O'Neill's tragic death.

How to live when society is ok leaving us to languish in unliveable conditions? How to live when our society can write blanket orders to let us die? How to choose to die when dying is exactly what they want us to do?

Communitarian salvation from fascism

Following Trump's re-election, I've seen many progressives and anarchists proposing that hyperlocal, community organising is the only way we'll survive fascism. I tend to agree. But disabled and Covid-cautious people have felt excluded from most community organising for over two years now.

This 2022 piece by Leah Lakshmi Piepzna-Samarasinha is evergreen. They write

A lot of people have had a brush with what it’s like to live a disabled life these last two years, and a lot of them want to forget it as quickly as possible. They’d rather expose themselves to all kinds of harm than continue to be disabled like us — mask, discuss risk, stay home, pass public policies for the safety of all. Unfortunately, this puts us all, but especially us, at risk. So many abled people — including abled members of the left; including abled queer, trans, Black, Indigenous and/or People of Color on the left — want to forget disability.

I wrote last year about how I felt that solarpunk visions of the future excluded many including disabled or chronically ill people. I feel the same about 99% of antifascist organising. (The mask blocs I've seen in the UK and the US seem to be the exceptions.)

So what are disabled people to do, if we cannot be a part of the social arrangements that will “save us”? How can we “make our own” in-person community spaces when we struggle to care for ourselves, or access public transport? Should we simply take a calculated risk and participate in physical spaces that could render us more sick and disabled?

I particularly feel this double-bind right now, feeling so socially isolated for so long. I've seen that community organisers have for the most part not responded to Piepzna-Samarasinha's heart-felt appeal. So for now, I stand on the sidelines, watching able-bodied people making plans to rally together and save themselves.

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I can't quite explain how all-consuming and all-encompassing this feeling of double-bind is when you are disabled or chronically ill. Some days I experience a double-bind from the moment I wake – should I rise from bed? Should I stay down? Either choice is bad.

But much worse than my daily embodied struggles is knowing that society is designed in a way to make me feel trapped – even those parts of society that claim to be about the liberation of all...