Disabled mutual aid - our resistance against social neglect
As health and legal systems continue to fail us as disabled people, this is how we resist— as our own examples of disabled justice, in support of one another, writes William Elisabeth Cuthbert
The administrative systems that claim to provide financial and medical aid to people with disabilities have long been inadequate. But in recent years, many have been ailing even further.
Without the proper funding to maintain their services, support systems are disorganised and under-resourced.
While they’re patched with superficial changes, as with the impending UK-wide switch from Personal Independence Payment (PIP) to Scotland’s Adult Disability Payment, underlying inequities go untreated.
There aren’t enough human resources left for adequate empathy or compassion.
Meanwhile, people with disabilities are providing these essential emotional resources to one another.
What’s more, our efforts are starting to get media attention, particularly since mutual aid became normalised during the mandatory COVID-19 quarantines.
Many disabled and neurodivergent people need mutual support, if only for advice or reassurance, between attempts to get our needs met by government services.
Safiyah* had to ask for a reconsideration of her PIP claim after her initial one was rejected.
When this appeal also got rejected, her case was referred to tribunal.
Knowing how exhausting these paperwork-heavy processes are, she now offers guidance to others writing and submitting their own PIP claims.
Qualifying for this benefit payment means meeting criteria such as having difficulty cooking or eating, bathing or getting dressed, moving around, leaving the house or travelling unaided.
The expectation to meet these requirements takes an ableist and pity-based view of disability, defined by permanent incapacity and perpetual struggle.
Despite this, much of the administrative and emotional labour is laid on the applicant, a carer, or support contact to provide details of their disability.
The evidence must also include examples of how applicants navigate daily life ‘on good and bad days’.
This phrasing is deceptive. Encouraging the applicant to state where they’re managing without support, it indirectly asks for evidence that support payments are unnecessary.
If it’s decided that an applicant’s evidence doesn’t make them eligible, the appeal process requires yet more proof they face personally insurmountable hardships in everyday life.
Safiyah recalls two years of feeling “invalidated, unseen and unheard” in repeatedly evidencing the reality of living with multiple disabilities, just to access one avenue of aid.
And she’s far from the only one.
Like many largely disregarded by inadequate support systems, Alex Kegie needs mental health care due to the stresses of living in a world designed for neurotypical people.
They get little to no help with navigating social spaces where people with disabilities are overlooked or distrusted at best, and at worst, actively excluded and abused.
Alex has been through mental health services numerous times with no long-lasting positive effects.
“There is no practical support for neurodivergent individuals available via the NHS, or any other government service for those with so-called ‘low support’ needs,” they said.
This is why they founded Nurologik.
An enterprise guiding businesses, events and venues to become neuroinclusive, it also provides NuroCoves—pop-up sensory soothing spaces for support by neurodivergence-informed mental health first responders.
Speaking about their business mission, Alex said “It’s been a very busy, but very rewarding time.
“I have definitely found my calling, and it’s all related to mental health first aid and saving lives.”
They worry they’ll work themself into burnout, having to mask their own difficulties to support others.
But to them, any hardship is worth it.
Rachel’s experience proves how essential Alex’s work is.
She too will regularly try to access medical support through her GP, only to find medical staff don’t see treatment as holistically related to disabilities or comorbid conditions.
Often mistakenly treated as if they’re reparable injuries or illnesses, disabilities have broader impacts than issues with direct medical cures.
The excess energy it takes to cope with the inaccessibility of public spaces and services can affect our ability to feed ourselves, clean our homes, or leave them at all.
Despite overlapping with PIP eligibility criteria, these kinds of cognitive and physical exhaustion aren’t always enough for a successful claim.
Yet the basic self-care efforts most abled people take for granted can become impossible, when so much mental and emotional stamina is spent on issues such as going shopping with highly sensitive or muted senses.
The need to advocate for ourselves—to tell people, establishments and systems our needs are valid and should be accommodated—is part of everyday reality.
If we self-advocate, we perhaps receive some of the support we want and need, provided it’s deemed a ‘reasonable adjustment’.
If not, the inaccessibility remains. As does the ignorance towards disabilities which aren’t immediately visible, or don’t always necessitate obvious sensory or mobility aids.
When we receive support, it’s often given with the begrudging air of ‘fixing’ the obstacles we’re seen to present.
If we don’t pose enough of an inconvenience, we’re rarely acknowledged for support.
Thoughts for our self-care, family lives, and the stability of our survival needs all fall by the wayside, as Kate well knows.
“I haven't been able to work enough for a liveable income for about ten years—or, in the past five years, at all,” they said.
“Even if I could work a few hours, it would hurt my disability case.
“My husband earns a decent paycheck, and because on paper his income seems like it should be sufficient, there is a lot of community assistance that we don't qualify for.
“We can't plan for any part of life long-term with so many uncertainties.”
Isolation, abuse, and denial of care and support disproportionately affect disabled people whose experiences and identities cross into other areas of discrimination, including gender, class, and race.
Dr Val Thomas is among the least diagnosed, under-supported, and excluded neurodivergent populations, as a Black-Indigenous working-class woman.
She went unidentified as autistic and ADHD for over 60 years of her life, while living with the impact of neurotypical ableist norms.
As a late-identified adult, she was and still is denied access to accommodations and resources she needs.
“In the same way that there's a ‘Black tax’ that results in compounded obstacles and costs in daily life, there's also an autism tax, and an ADHD tax,” she said.
“I've seen where race, antiblackness, anti-indigeneity, and decolonising need to be addressed more broadly in the neurodivergent community, and hope that I can be in those conversations in useful ways.”
The ignorance of invisible disabilities also doubles down with every layer of prejudice.
For instance, in the misogynistic neglect of chronic pain conditions ascribed to women, like fibromyalgia and endometriosis.
Years after surgery to treat chronic menstrual pain, which was only addressed after it became a “24/7” constant that impacted her work and income, Rachel is still recovering from the trauma of being dismissed and refused care she needed.
“I am rebuilding my life,” she said.
“There are times where I have felt like a burden. When those around me can’t provide support, or they provide it with resentment—possibly because they aren’t getting their own needs met, or feel afraid or unequipped—it can be very lonely and make me feel hopeless about the future.
“Fortunately, I have a wide support network.”
Rachel and Safiyah met through the Disabled Students Society at the University of London’s SOAS (School of Oriental and African Studies).
After the president of the group put out a call for support on Safiyah’s behalf, she was matched up with Rachel for help with everyday tasks.
Alex met Safiyah while providing an admin virtual assistant service, which they’ve since had to step away from because of their fibromyalgia, and chronic mobility issues from Ehlers-Danlos Syndrome.
“But [mutual aid] isn’t about being transactional, it isn’t a relationship of debt,” Rachel said.
“It’s not ‘I did your laundry last week, so do you must do the equivalent for me’. Instead, we give differently to one another depending on our capacity and our needs.”
Our connections based on aid aren’t commodities. They don’t have to end because they’ve stopped providing a service.
Instead, these relationships—as between Safiyah, Rachel, and Alex—can evolve into friendships.
If you speak to people with disabilities, you’ll hear us put many of our reasons for joy and resilience down to our disabled friends.
We remind one another of our worth in life, how deserving we are of happiness.
We are each other’s reassurance of agency and purpose, in supporting others and being supported in return.
Our efforts for community, as a community, are how we break through the systemic injustice we face in seeking support.
But as Rachel puts it, “the very things that make us more likely to be empathetic and understanding of each other's needs, can also sometimes make it harder to meet those needs.”
If how we care for each other was adopted by neurotypical society, and establishments that don’t serve us equitably, we would have the groundwork for a sustainable and compassionate structure of care for all.
Whether it’s with applications for financial support, permits for tax or payment concessions, navigating health services, or advice on advocacy, many of us want to provide some kind of support to others in our community.
Alex aims to make Nurologik a registered social enterprise.
“The people that I’ve been able to help has been so rewarding,” they said of their business in particular.
“People walk into a ‘quiet space’ looking broken and leave smiling and thanking everyone involved.
“It makes my heart glow. Makes my life worth living.”
Finding support in online forums and initiatives
For Rachel, it’s her Care Curriculum where she writes on disability, chronic illness, and the craft of caring for others.
For Kate, it’s card swaps for the chronically ill, or taking part in Postcrossing, which randomly matches people to send and receive postcards from all over the world.
Sometimes it’s about logging in to reach out. Val is “overjoyed to find neurodivergent community online, where I can unmask and be who I actually am, as is; I need my neurodivergent comrades.”
When harmful and inaccessible systems threaten to limit our worlds, we as community open the ways between ourselves to knowing unconditional friendship, self-worth, peace, and freedom to live.
With systems rigged against us, we depend on each other for support, care, and acceptance.
But that is our resistance.
About the author: As a queer, trans and disabled journalist, William Elisabeth Cuthbert (any/all) writes about the humanity in being marginalised. They hope this causes a shift in the minds of some who are otherwise ignorant, or indifferent, to the lives led by people too often viewed through ‘controversy’. In between, they spend their time writing queer historical fiction.
*name changed to protect identity
The Lead has compassion for the disabled community at its heart, as a progressive publication we think it’s only right to shine a light on inequality and injustice. You can see how we reported on Britain being hauled before the United Nations for violating the rights of the disabled. And how police in Lancashire were forced to pay out for their treatment of an officer who had PTSD. You can support us in bringing