I first learned of mutual aid groups a few years back when I spent some time as a grassroots activist.
From 2015, I joined climate strikes and women’s marches, and volunteered at shelters and food banks, where I met people involved in mutual aid – when a community works together to meet their needs outside of government or charity support. But it never struck me as something that would achieve mainstream appeal.
It wasn’t until last year that I realised its transformative impact.
As well as being disabled, I am also a carer to my disabled mother, although we live apart. I’m sure many disabled people will agree when I say that seeing the pandemic reach the UK and going into our first lockdown in March was terrifying in so many ways.
ONS Data shows that three-fifths of Covid-19 deaths in England and Wales, so far, have been disabled people.
Being a carer is never easy, but having to balance my own disability needs with my mum’s felt like a zero-sum game. The pressure was suffocating.
In April, I stumbled across a mutual aid group on social media, located close to my mum’s home. I was slightly cynical but had no alternative plan of how to get through the year, so I promptly joined.
From the very first day, I was able to make requests in a WhatsApp group and assistance would be offered by volunteers. This meant I could get medication and shopping delivered to my front door, and even PPE to make it safer when I had to bathe my mum or clean her house.
I was stunned by the ease and speed with which this happened. Some volunteers are seasoned activists, but most are regular people looking to make something good out of something awful.
Usually, help for disabled folks (outside of family) comes from government, charities or private carers, the last of which requires socio-economic privileges which I and many others lack.
When it comes to the first two, the needless friction of bureaucracy and invasive questioning involved in applications and assessments can seem like insurmountable hurdles, as if the system is designed to obstruct, not to help.
For instance, when my mum had to appeal the decision made about her disability benefit (it is now called Personal Independence Payment, or PIP), the process took her 10 weeks. That was on top of the four months she spent applying initially. It’s like the intention is to make people give up on their application.
As of January 2019, over 17,000 people have died waiting for a decision to be made on whether they could claim disability benefits. At least 69 suicides were reported as being linked to benefit claims over the last seven years, though a National Audit Office report warned that the true number will be far higher.
During assessments, you have to recount your worst days, explaining trauma-riddled experiences in detail – which, for many, include things like PTSD, self-harm and accidents that caused disabilities – often to someone trying to pick holes in your account and with no offer of aftercare.
The nurse who assessed me had never even heard of my condition, Hypermobility Syndrome, before. Yet, after half an hour interrogation, she was to decide whether I was ‘disabled enough’.
Resorting to help from charities can be equally challenging.
Charity failures have been documented by activists such as Ellen Clifford, who wrote in her book, The War on Disabled People, that ‘they can easily eclipse the voices of disabled people ourselves’.
From single-issue focuses to common saviour complexes and high CEO pay, they can be very problematic. Add to these, the laborious paperwork and strict eligibility criteria that rule many disabled people out.
With these things to consider, it’s no surprise that mutual aid groups have surged in popularity amid Covid-19. There are 15 mutual aid groups within 15km of my house, from village-wide groups to those for specific towers and blocks.
The more hyperlocal the group, the better, as services can be provided more quickly without barriers to help, bureaucracy or vested interests.
This flexibility and lack of ulterior motive means repressed groups such as disabled people are treated with respect and autonomy. Dignified services can be individually tailored. In my experience, volunteers problem solve collectively, providing suggestions and allowing the person in need to make final decisions, not imposing them.
This sense of empowerment is sorely lacking from top-down care provided by government welfare or charity initiatives. Mutual aid feeds self-determination and independence, with no expectation of anything in return and no catch, hence the mantra ‘solidarity not charity’.
I don’t think this scale of practical, community solidarity has been seen since the miners’ strikes of the Thatcher era, which my grandad participated in. Then, as now, poverty exploded and my mum has memories of community-led aid – including food parcels, clothes and nappies being delivered to their home and their neighbours’. Many of these groups operated in much the same way as mutual aid, outside the parameters of charity and government.
It’s hard to see the demand for mutual aid groups decreasing in the near future. With the current financial crisis, issues in social care, as well as housing, the effects of the pandemic will be felt for a while yet.
And all this will take place under the stewardship of a governing party with a long record of sacrificing marginalised groups on the altar of the economy.
Most economic forecasts show an entrenchment of existing societal inequalities post-coronavirus, and disabled people are already disproportionately likely to live in poverty.
It is imperative then, to ensure that mutual aid groups continue to thrive.
We must not let the community networks we’ve built die down again once the pandemic subsides. The only way to do this is through mass participation, so I encourage anyone interested to join a mutual aid group in their local area.
Building community resilience helps to insulate our most vulnerable from the tumults of Westminster politics.
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