What support looks like
Solutions from total institutions to grassroots care circles
Have you ever been hesitant to help a friend because you know the support you can provide is wholly inadequate compared to the amount of support they require? Maybe we can help occasionally or in some small way. Yet, it feels safer to not go out of our way to get involved than to offer up help then have to turn down requests for help we aren't able to provide.
I've certainly shied away from helping when someone obviously needed a lot of support. It's easy to help someone who broke their arm and needs help with chores for a few weeks. Offering to help someone whose need for care isn’t temporary and goes way beyond opening a jar can leave people wary that helping once creates an ongoing obligation they won’t be able to fulfill.Â
People help me all the time. I need a second set of hands or a ride to the store to buy something too big to carry home on the train. I suspect it’s easy to say yes because I have the financial and community resources that they can say no without guilt. If they’re busy I can ask someone else or hire someone to help me.
This is a contributing factor to how people with disabilities can grow increasingly isolated and see community support shrink rather than grow over time.
This common quirk of human nature means that people who need less help are more likely to get informal assistance from friends and neighbors. Neil Crowther quoted Caroline Abrahams and explained:
"‘If you provide people with a bit more support, they are more inclined to want to care informally. For example, neighbours and friends are often terrified that if they start doing help for someone, they will suddenly be landed with it—they will carry all the responsibility themselves and be left holding the baby, as it were—but if they thought there was better support around them, they would be more inclined to help.’
But many people, including many adults with learning disabilities, don’t have access to such resources at all. For many others, networks of informal support are not self-executing but rely upon expert organisations sourcing and marshalling support and  making connections, such as the work of Circles, Local Area Coordination or Community Catalysts for example. The sheer number of older people expressing loneliness as their primary concern should also be a clue to the fact that reducing social care to ‘personal care’ – even if free – could prove to be a false economy if it means other support is not funded.​"
​It’s easy to see how people become isolated. Formal support is difficult or impossible to access and maintain. The lack of formal support contributes to social isolation. The lack of informal care leads to people being institutionalized. The way institutional care is provided apart from the community further prevents people from developing and maintaining community ties. The result is that people without community support are often unable to access formal support and people without formal support often lose community support.
​The big needs we all have are for:
Housing that’s safe, accessible, affordable, and flexible
Transportation that’s safe, reliable, accessible, and affordable
Financial resources to cover basic expenses, pay for ADA support, and provide for medical coverage
Support for administrative burdens and programs with reasonable administrative requirements
Scaffolding for building a community, like regularly scheduled events with a low barrier to entry and special events run by community volunteers
Total institutions — like asylums and colonies — provide for all of these needs. While having all of our needs met sounds like a good thing — and these institutions have their fans — it’s understandable that most people would not choose to live in a total institution. There's not one solution that works for everyone and there doesn’t need to be. While all people have the same kinds of needs, we like having choices for how our needs are met.
In the coming weeks I'll be highlighting some organizations that support people who need care and those who provide care — whether that's their stated intention or simply what happens when you create a great community program.
Thank you for writing about this Cori. You can add the hesitation to ask our social networks to provide care when we ourselves fear that a request to pick up a fee groceries might become too frequent and put strain on already strained friendships. I live in a apartment building with an FB group and would love to ask if anyone going to the grocery would be willing to pickup a couple of bags of kitty litter. Its too heavy for me to carry. Yet I haven’t even asked because I don’t want to be the needy cat lady on the first floor. Yet healthy me would have been more than happy to do that for a neighbour.