I had a fascinating conversation with a friend recently, in which I mentioned in passing that a group was asking me for help and advice in shaping disability-related policy, but that I didn’t have time or energy to give it to them. (Not to mention that the attitudes of the group in question have not filled me with high expectations for how they will use that help and advice.)
My friend pointed out the major oversight here, the huge thing I was missing. In this particular situation, I’m not just being asked to share a bit of advice or help. I’m being asked to share my expertise, which has been shaped by years and years of training and experience. By an organisation that makes a profit (albeit a small one). And I’m being expected to share it for free. Why, he asked, was I not quoting them a price for my work?
A society that allows disabled people no opportunities
In my purest, most altrusitic, most utopian state of mind, uncorrupted by real life, I am a socialist. I think the economy should work along lines that are close to Marx’s principle of ‘from each according to their means, to each according to their needs’.
But there are two problems with attempting to hang onto socialism in a real, disablist economy. The first is that Marx had little time for disabled people and his principles probably would never actually work for us. The second, of course, is that we do not live in a socialist economy.
In fact, we live in a society that is oppressing disabled people, and driving them into horrific poverty, to a degree that we have not seen since probably the Victorian era. I’ve talked to a lot of my disabled friends recently who are facing the prospect of a future full of dire poverty and literally being stuck in bed long-term, thanks to our current government’s policies around taking away benefits, care and support provision, all of which used to allow disabled people to work (and now they can’t). I know that we disabled people need to seize economic opportunities when we can, in order to survive. The government is not giving us anything according to our needs anymore. It’s possible that they never will again.
“Your expertise is not worth anything”
I also know a lot of disabled people who consistently face the expectation, from non-disabled people, that they should give away their expertise for free. This is because of the incredibly low value that non-disabled people place a) on disability rights and equality, and b) on disabled people ourselves. Why, they think, should we pay for disability equality training, when we could happily (and cheaply) continue as we are? At the very least, you should give us this training/information for free, they say.
Here’s an example. Ann Memmott delivers incredible autism equality training. She mainly works in church contexts, but also in other settings. I’ve been lucky enough to hear her at conferences. Her expertise is worth a lot of money. But she has talked about being told that her expertise is not even worth the cost of her travel. She has literally been told, “Your expertise is not worth anything, and should be free.” Our society places an extremely low value on autistic people, and on autism equality/rights. It places even less value on changing its practices to be more inclusive of autistic people.
I may not personally be horribly short of money (thanks to the incredible privilege of having a partner who can work and who supports me.) But if I contribute to non-disabled people’s expectations that I will do work for free, what precedent am I setting?
I also realise, as I’m writing this, that I seem to believe I’m only worth “not being horribly short of money”. This is hardly having a high expectation of my own skills and their value. My training is actually worth a lot of money. I charge up to £500 a day for disability equality training, with organisations that can afford this. That’s what my expertise, skills and experience are worth. (I have a Master’s degree in Disability Studies which took a year and cost me a few thousand pounds; I did a year’s training to be a Disability Equality Trainer; I have a PGCE in adult education and training which took another a year; I have been working on my PhD in disability and religion for many years, which also costs me money every year; and I am bloody good at what I do.) So why do I not charge this much consistently for my expertise? When I am working with smaller groups and charities, why do I not look at what they can afford, and only discount my fees based on their ability to pay? Why do I offer my skills for free so much? How far am I creating my own poverty here, and how poorly am I valuing myself?
The principle of ‘My expertise is worth a good price’, despite how poorly society may value me
There are places where I will always offer my expertise pro bono. The fantastic Druid Camp, which has literally no money, offers me a free working ticket in return for my year-round and on-site expertise, and they are really using that expertise to try and improve access. (I had to be persuaded to accept the free ticket, which continues to say a lot about how poorly I value my skills.) Some churches have very little money, but are very keen to hear from me and will pay for my travel and give me networking opportunities, and I know they will take the expertise and do something with it. When I’m sharing research findings from my PhD, I will rarely charge, because ‘sharing findings with the community’ is part of my role as a disability researcher with responsibilities to my participants. Sometimes my friends request advice or help, and I’m delighted to offer it, because they’re good people and they really want to learn, and will use what they learn from me. (My partner Shai works on the same principle – they share disability benefits application advice for free to those in most need, despite being a trained lawyer and professional advisor/advocate. This is because Shai is a ridiculously good person and knows there are people in real need out there.)
But the principle of valuing my skills, and sharing those for what they are worth, is really, really important. It’s not just a principle that affects me. It affects all disabled people fighting for opportunities in this disablist society that does not value what they have to offer, but should value it. It is a principle which is not particularly socialist, but which is good disability activism.
If you can afford to pay for my expertise, I’m not sharing it with you until you demonstrate that you really value that expertise. Until you pay for it. While we live in a capitalist economy, this is key to my survival, and to the survival of other disabled people. And more than that: it’s a spiritual principle that I need to maintain, as a Pagan who says my worth comes from my humanity and my connection to all life. And it’s a humanist principle that I need to maintain, as a humanist who says that we all have true worth as human beings, whether we are disabled or not.
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I’ve said before that I’d be second against the wall in the revolution. The first wave would be those that the revolutionaries hate for principled reasons – the rich oppressors. The second wave would be those who prevent socialism from working properly, because we will always have far, far more needs than means. I think that most disability activists don’t consider how poorly socialism would work for us in the real world. I’ve worked with enough egalitarian socialist radical groups who remind me how much disability access costs them, to know that most groups are not benevolent enough to include us. Individuals, maybe. Not groups.
Sorry to end on a note of cynical realism. You may now return to your regularly scheduled experience of finding me a weird source of thought-restructuring inspiration. 😛