The role of friends in disabled people’s social isolation
When Cain asked God if he, Cain, was his brother’s keeper, he meant it rhetorically. He certainly didn’t expect a response in the affirmative.
But the answer was yes. It is yes.
I’m trying to live independently of my parents. People from a range of relationships to me are all asking the same question: ‘how will you cope?’ Not, ‘how can I help?’
Do you see the difference there? The trick, the sleight of hand? I know my friends. I don’t think they realise what they’re doing. They think they’re expressing concern. But they’re expressing more than
that. They’re saying that they’re not my keeper. They’re shifting the onus from themselves onto me. Now, maybe if I had the physical ability to do something but was lacking in some sort of personal agency, people supporting me to need less support would be good. But even then, ‘what will you do?’ wouldn’t really be the right approach; in this theoretical example, such a person probably needs help to identify a range of possible solutions before being asked which they want to pick. That would be appropriate onus-shifting. Help someone identify the solutions. Then ask them to carry them out.
But I, like many with chronic illness or disability, don’t need help identifying the solutions. We need help implementing them.
In my situation, where I’m asking my friends to be friends and my church leaders to fulfil their pastoral role, where what I’m trying to achieve is the same ability to choose where I live and who I socialise with and how often, the question ‘how will you cope?’ isn’t the right question. That question is like saying, ‘if you struggle you can’t come to me for help because I implied you shouldn’t move unless you don’t need my help.’ It’s like saying, ‘I’m not your keeper and I refuse to take any responsibility in helping you when you need help. I’m not your keeper. Ask someone else.’
It tells me that if I do something that my friends or those with pastoral responsibility for me disagree with, I can’t then ask for their help. I only get to ask for help in a subset of situations which they have pre-emptively decided are acceptable situations for me to ask for help in. I don’t get to decide when, where and why I need help; they do. I don’t get to decide what is the best course of action; they do. Because if they don’t approve, they won’t help; and because I am physically limited, I do need help, regardless of what decision I make. So I can’t make decisions that are contrary to what other people decide they’ll help me with.
As with many people with chronic disabling illness, there are two major issues: getting the physical tasks of life done; and maintaining social interaction. My disability benefits (albeit currently inadequate) pay for someone to help me with the physical tasks. But I can’t pay my friends to visit me and I can’t force them to visit me, for the simple reason that if they needed either carrots or sticks to choose to spend time with me, they wouldn’t be my friends. Friends are people who choose to spend time with you because they like you. They’re not people you pay to visit you.
This attitude, which asks me how I will cope with living away from my parents given that I won’t then have my parents’ company in the evening and am likely therefore to end up feeling lonely and isolated, is the problem. It is the expectation that I am the one who does the work, rather than my friends and church staff. It is the assumption that the onus is on me, rather than on others. It is the attitude that says I’m my own keeper.
But I can’t do that. I can’t go out to work, or go shopping, or go to park runs, or travel to other people’s houses, or join a social club. I can’t do these things because I have a chronic illness that physically limits me. That chronic illness is insoluble. Therefore, the solution to illness-induced isolation doesn’t lie in me. By definition.
The reality is, my friends are my keeper. Just as I am theirs. The onus is on them to support me as I need it. Just as the onus is on me to support them when they need it. The only differences are that I have permanent needs, and my friends don’t; and my friends can restructure their lives and refocus their energies to adapt to problems, and I largely can’t. It doesn’t change the fact that they are my keepers and they are responsible for keeping me from isolation and loneliness.