What Am I Worth?

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.[1] 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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[1]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. 😛

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Celebrating Good Access, Never Forgetting Disablism

We had a wonderful day yesterday.

My dear partner Shai likes me to take me out on adventures. Most of the time, I’d really rather stay at home and watch Agent Carter have adventures without me. Having my own adventures tends to lead to access difficulties, constant microaggressions, stress, meltdowns, exhaustion and days needed to recover. But going on adventures makes Shai so happy. They are determined that we will access the world even if it would rather we didn’t.

So when we woke up yesterday and it looked like it was going to be a nice day, we were off. Me on my scooter, Shai with their sleeves rolled up ready to fight anyone who got in our way, off for a London adventure. All day we tweeted clues about where we were.

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Setting off from home

We started by getting the (surprisingly accessible) rail replacement bus to Stratford, from where we went over to the Olympic Park.

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Access information area at the Olympic Park

The Olympic Park, former site of the London Olympics, is fab. Because it had to be designed with the accessibility of Paralympians in mind, it’s fully accessible, from its paths to its wetlands to its river walks. We met some fantastic volunteers who gave us great advice on accessing the park. (Well, actually, they saw me and got very excited. A disabled person we can advise! Finally!) The park has a buggy service for those who can only walk limited distances (it will pick you up at set points so that you can get back easily from your short walk), electric mobility scooters that can be borrowed, and volunteers ready to give out lots of information including directions and advice on the most accessible ways to do things.

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Wetlands area at the Olympic Park

After that good experience, we caught the DLR train (because the River Lea towpath was out of action, as we discovered on the way) and headed to the Emirates Air Line – a cable car across the Thames with views over London.

The DLR is fully accessible, which is good because the rest of London transport has a lot of catching up to do to get to this level of accessibility. But it’s not bad at all, unless you don’t know which doors to go in to find the wheelchair space. Two DLR train changes later…

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I may have been a bit over-excited about getting the cable car above the Thames

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View over the Thames from the cable car!

It was a great day. We had very few access problems, other than a few mean people (mostly well-to-do-looking older people, interestingly) who wouldn’t move suitcases out of wheelchair spaces on the train, and held up lifts, and stared at me, and were generally not so nice. On the whole though, people were wonderful. We met allies with baby buggies, and friendly restaurant servers, and very helpful tube staff, and wonderful park volunteers, and a lot of just plain lovely people. And there was nothing I wanted to access that I couldn’t. I’ve tweeted the Olympic Park and Transport for London, thanking them for the good access.

But I wonder about the amount of celebrating I’m encouraged (and encouraging myself) to do over good access. Do non-disabled people celebrate being allowed to get on buses and tubes? Do they rejoice over tables in restaurants that they can reach without an obstacle course, or that they can simply get to at all? Are they ecstatic about being able to use the toilet? Do they breathe a sign of relief when they aren’t shouted at by transport staff or venue managers? Are they grateful daily for housing that doesn’t harm their body and where they can access everything they need including the kitchen and the bathroom?

Finding the balance is a tough one. The people who go out of their way to help break down barriers in this inaccessible world are worth thanking – there are so few of them. And I need to be encouraging people to respond positively, rather than aggressively, when I ask for access. But I would still far rather live in a world without the barriers. And I strongly believe that expecting access should be the norm, rather than something I should be expected to be grateful for (as the UK government would have me believe).

Mark Neary seems to be having this conflict over his blog posts too. People are asking him to be more ‘balanced’ when he criticises services where oppression of marginalised people happens. He’s basically getting a ‘not all psychiatrists’ argument – which is a silencing and derailing technique, a bad faith argument. Similarly, I’m often told I complain too much, or that I’m too aggressive about disablism/poor access, or that ‘not all non-disabled people’ hate disabled people. If I’m not told it in words, it’s in eye rolls, uncomfortable silences and quiet encouragement to be nicer and less complain-y. (“But you must also have had GOOD experiences with…” *…cue silence from me*) It’s true that ‘not all’ services, facilities and social structures are oppressive and/or inaccessible. It’s true that not all non-disabled people get their thrills from controlling disabled people, as in the example from Mark Neary’s blog. But all disabled people encounter disablism, microaggressions, marginalisation and oppression. Often, daily.

And as with the basic problems evident when people say ‘not all men’, neither is it acceptable to say ‘not all non-disabled people’. Non-disabled people should not expect to be thrown a party full of gratitude and presents just for providing acceptable levels of access. And criticism by disabled people should never be silenced.

I will always criticise disablism more than talking about good access. The latter should be the least I can expect. The former should be widely and loudly decried, so that the word gets out that it is never, ever acceptable. If you get bored of my complaining, you’re free to stop spending time with me. (Many have chosen this option! 🙂 ) It’s worth losing friends over. Disablism must be rooted out and challenged wherever it is found. The same goes for other forms of insidious social oppression – racism, sexism, transphobia, homophobia, oppression of religious groups particularly Muslims… the list could go on and on. I’ll always aim to shout about it before I celebrate its absence.

But still. Thank you to the lovely disability access volunteers at the Olympic Park. You’re fab, and you made our day.

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STOP QUOTING THE POLICY AT ME! (Or: Your Piece of Paper Doesn’t Exclude Me Any Less)

I am so tired of having ‘the policy’ quoted at me.

This year I wanted to attend Autscape. I am tired, so tired, of daily trying to fight my way into the neurotypical world. I was excited about an event that puts autistic people at the centre, makes itself accessible to all autistic and neurodivergent people.

Then I found out it wasn’t fully accessible to wheelchair users.

OK, I thought. Maybe I can make it work for me. Maybe I can be creative, work around issues, with the help of the organising committee who will no doubt support me with information and help.

Then I found out that it’s their policy to focus on wheelchair accessibility only ever other year, to keep costs down the other year. And the familiar disappointment kicked in. And I just… gave up.

I found it a little ironic that the theme of this year’s Autscape was ‘creating autistic space’. Autistic space that excludes certain autistic people. And that when I talked with a delegate over twitter about a session running there on the subject of exclusion in the autistic community, I was told that wheelchair accessibility had already been discussed (with the hint that it would not be discussed again). While the person no doubt meant the comment helpfully, it was a reminder that even in discussions about who is ‘in’ and who is ‘out’, a whole excluded group has already been ‘dealt with’ and the conversation there has ended.

All because of a policy.

To quote an email I sent to a friend today:

I told my wheelchair-using neurodivergent friend about this and she wondered how the autistic community would feel about a neurodiversity conference that wasn’t accessible to autistic people every other year. Despite the fact that everyone is quoting the bloody policy at me every time I bring this up, telling me that it will be accessible next year is not good enough… I sobbed my way through reading the Autscape twitter feed this year. And deleted a tweet complaining about access because I worried I’d get shouted at. Really sucks.

Pagan Parallels

I’ve talked a lot, mostly on my other blog, about inaccessibility in the Pagan community. It continues without much sign of improvement, especially in London. The excuse gets rolled out a lot when I complain – whatever the excuse is, whether needing privacy for discussion, or the inaccessibility of pubs in London, or (funniest of all) that no wheelchair users ever come to the events. (Really?! No wheelchair users come to events held in an upstairs room? You do surprise me!)

For the past couple of years I’ve also been struggling with OBOD‘s approaches to accessibility and policies about certain disability issues. (More on that can be found on my spiritual blog when I feel up to discussing it, and maybe at Gods and Radicals soon.) Once again, it’s not so much the existence of the policy that’s the problem (although it is a problem). Worse is the way that people respond every. single. time. I mention it. “This is the reason for the policy! Learn about the policy! It is a good policy!”

Brick walls, and communal dismissive attitudes, and regrouping protectively around the boundaries of your organisation. These are the very definition of exclusion.

Please Stop Quoting the Policy At Me: Some Effects of Brick-Wall Exclusionary Policy-Citing

It’s one thing for something to be inaccessible or exclusionary. It’s quite another for you to have enshrined that inaccessibility in a policy – and then to constantly quote that policy at me as justification for your inaccessibility. I know there’s usually a reason for inaccessibility. I know it’s sometimes a really good reason. Can we please assume that, as an informed disability rights campaigner, I already know the reason, disagree with it, and would like to move on to talking about ways forward, alternatives that might include me and people like me? Instead, though, I meet the brick wall of a hundred people quoting the policy whenever I mention access difficulties. Or saying things at me like “This has been discussed before,” as though that solves the problem. Somehow, never an apology. Never a “Here’s what we’re in the process of doing to try and fix this, longer-term.” Never even an acknowledgement that this is a problem, a policy of exclusion, an example of disability oppression. Always the justification. Always the assertion that we are right, and that I am the one with the problem.

As a result, I feel excluded from your community. (Which becomes your community, not mine anymore.) I increasingly withdraw from your events, including those that are fully accessible. I become avoidant about talking to people from your group about access at future events. I become scared of your group. Mentions of it start to be upsetting to me. Your group stops representing safe space, and starts representing exclusion and oppression.

I Keep Offering Help…

I don’t have a lot of  free time. The time I do have is spent dividing up my tasks (PhD, other work, volunteering in many ways, personal life) against my spoons, trying to eke them out into something that approximates a rewarding life. Yet I will always respond to inaccessibility with an offer to help fix it – usually for free. Consider taking me up on this. I charge private organisations around £250 per half day for this help. If I’ve offered you help to fix something, you’re being offered something valuable from a trained and experienced Disability Equality Trainer and widely-published writer on the subject. If you turn me down, and then get taken to court by someone with more determination than me, and find yourselves unable to say you’ve done anything, you might start wishing you’d accepted the help. (I’m talking mainly to the dozens of Pagan orgs and groups I’ve offered help to, here.)

There’s a related question, too: how far do I have a responsibility to fight these things? Can I belong to OBOD when I know that one of their policies, and other of their accessibility practices, are problematic for entire swathes of the disabled community? Can I go to Autscape knowing that their policy is to exclude wheelchair users every other year? In both cases, the policies do exist for really good reasons, in one case (Autscape) with the aim of not excluding others (people living in poverty). Intersectionality is complex, and the real world is a complicated place. So what is my responsibility to campaign and fight here? Do I have a personal obligation to fight and campaign? And how does that affect my right, and need, to live as ordinary a life as possible? (I need spiritual practices/groups that make me happy and I need safe autistic spaces. Am I allowed them, as a campaigner with integrity?)

Accessibility Has More To Do With Imagination Than Money

Yes, accessibility can (sometimes) be expensive.

Yes, inclusive policies can open you up to other kinds of legal issues.

You can still make change, with enough imagination. Druid Camp is working with me on making their camp more accessible for more disabled people. If they can manage that in an empty field, you can change a few things with a little creative thought.

And by accepting help from those who offer it.

And by not shouting people down, but instead being willing to listen and change.

Final Thought: A World of Disappointment

For me, my experience as I engage with an inaccessible society is one of consistent disappointment. I meet disappointment about 80% of the time that I want to do something other people can do. And I am disappointed in people I want to think better of.

I would like to live in a world in which I experienced a little less disappointment.

And this is why we fight.

Resources

I’ve recently been writing about exclusion from universities and churches, in relation to my research, for a creative research journal that’s coming out soon. I’ll link to it here when it’s out.

I’ve set up a Facebook group for marginalised Pagans from minority, oppressed and excluded groups. Do join if you fall into that category. I’d like to get allies together to work on some of these issues.

Cross-posted to my Pagan blog.

Derailing

I wanted my first proper ‘return’ post to be about something meaningful. The way Asperger’s has been (possibly incorrectly) related to the shooting in California, and what that says about the Othering of neurodivergent people, for example. Or the cuts to Disabled Students’ Allowance which are going to further exclude a group of students who are already extremely marginalized in academia. And hopefully I’ll come back to each of those topics. Continue reading