Naming and Shaming: The Science Fiction Book Group

*ETA: I had a sudden moment of more-madness-than-usual and edited in the direct link to the group, below. Enjoy.*

I’ve decided to start a ‘name and shame’ series here, aimed at organisations and institutions that discriminate against disabled people, exclude us, and don’t follow equality legislation.

Obviously there are some groups and orgs that I can’t name because I’m, let’s say, connected with them in ways that mean I should be careful of what I say. With others, I’m too afraid of repercussions to share the full details of the group (as in this post’s example). So ironically, today I can only shame, not name. But on the whole, I’m able to, and I want to. I go through life giving my time and money to a lot of institutions that then feel they can treat me less favourably than others, or directly discriminate against me, because I’m disabled. This is a daily occurrence for many disabled people, and I don’t think we should sit back and stew silently over it. And many people don’t – the other side of our highly connected age is the ability to share the names and details of the companies that treat us like crap. Allies and fellow disabled people can then choose what they want to do about this. I personally don’t want to frequent establishments and services that have treated me, or my friends and colleagues, poorly.

Plan and Cancel: Nay and SJ’s Strategy for Life

Meet the heroes of this adventure, SJ and Nay  — the indefatigable Team Jacobs.

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(Well, not really indefatigable, as Nay is regularly very fatigued, but definitely undefeated.) Nay and SJ (a mutant and a… weirdo) travel the universe battling the forces of disablism. Each has their own strengths that compliment those of the other, like any good hero team. Their strategy: to ‘plan and cancel’ – to make sure that Nay doesn’t miss out on life due to the effects of being a mutant in non-mutant society, by making plans and then cancelling if Nay is ill – I mean, having a mutant attack. This way, Nay gets to enjoy a full life as much of the time as possible, not being too afraid to make any plans and never going out as a result. Nay has spent many years teaching herself that cancelling does not make her a bad person (even though our story’s minor antagonists, the Inner Demons from Planet Neurodivergent, spend a lot of time trying to tell her otherwise). Mostly, she’s winning.

However, there is an evil enemy in this story – the enemy of the wonderful ‘plan and cancel’ strategy of the super Team Jacobs. An enemy that would like Nay to give in to the Inner Demons from Planet Neurodivergent, and worse. This enemy is called Disablist Society.

OK, I can’t keep up this metaphor or I’ll get very confused, but you get the idea. 🙂

Meetup.com and the Sci-Fi Book Club That Did Not Understand What ‘Discrimination’ Meant

In these highly connected times, some people start small groups and forget that these, too, have to follow disability equality legislation – no matter how small or unfunded they are. There is a strange idea out there that you have to be some sort of big company to be required to make reasonable adjustments for disabled people. That isn’t true.

Things with the science fiction book club started off quite well. The group leader saw that I was using a wheelchair in my photo, and contacted me to reassure me that the group was on the ground floor of an accessible pub. Some people might have found this a bit odd or creepy, but it was certainly convenient for me. Accessible meet ups of this kind are not too common in London, so I was pleased that I could get into the building. But I mistakenly assumed that the policies and practices of this book group would be equally non-discriminatory.

The problems started when I had to miss two book groups over about a three-month period. I experience severe migraines related to my EDS – and I do mean severe. At this particular time last year, I was experiencing occasional but very nasty episodes of all-day severe pain, dizziness, vomiting, intolerance of almost all light and most sound… Not exactly a great situation in which to attempt to drive across London for a book club. I was as disappointed as anyone could be about having to miss meetings, when I had read and very much enjoyed the books due to be discussed. (In the case of one book, I hadn’t been able to stop talking to SJ about it for weeks, and my disappointment at not being able to go to the discussion was huge.) But my migraines can come on with little warning, and then there’s nothing I can do. On the first occasion, I think I got the first signs of a migraine in the afternoon of the book club evening, so I changed my RSVP to ‘not attending’ the moment I knew I wasn’t going to make it. On another occasion, I believe the migraine came on very suddenly, too late to change my RSVP, but I wrote on the message board for the group explaining that I wasn’t going to make it and that I had disability-related reasons for this. On one further occasion I was a few minutes late because I had just come from a medical appointment at a hospital on the other side of London – literally maybe five minutes late. (That was my first sign that something was wrong – the book group leader was very rude about my lateness, even when I went up to him privately afterwards and explained I’d come from an unavoidable medical appointment. Making me feel like a naughty school child…)

You can probably imagine how I felt when, after the second time, the book group leader sent me one of the nastiest emails I’ve ever received. He made it clear that my ‘behaviour’ was not acceptable, that lateness and cancelling could not be allowed in his book group, that I was preventing other people from coming to the book group, and that I was on my ‘first strike’ and would be removed from the book club after three. When I, nonplussed, replied explaining what disability can mean to someone with chronic illnesses and an autistic spectrum condition, his response was to treat this like an excuse and to talk to me like a naughty child. I made it very clear that disability discrimination is not just about ramps and buildings, and then I left the group.

It’s now several months later. This morning I received an email from the book club host. He has, apparently, recently sent out an email shaming a large number of people for needing to cancel their ‘yes’ RSVPs to book group meetings. In this email, he outlines some of the ‘excuses’ he received. Among these were several cases that were clearly to do with disability and chronic illness. He wanted me to receive this email too, apparently to prove to me that there was ‘nothing personal’ in his response to me. I emphasise: I have left this group and he still felt the need to remind me of how poor my behaviour was, and to tell me about others’ medical situations that have led them to lead to ‘plan and cancel’. One poor person who is shamed in these emails apparently had gastroenteritis during a couple of book group meetings. What a horrendous situation for that person to be in: not only experiencing an extremely painful and activity-limiting illness, but then to be treated like a terrible person for having to miss out on life as a result.

I am under no illusions here: this is a manifestation of our society’s normalcy structure, and what it values (and does not) today. It values those who know when they can be active, and who can be active most of the time. It values those who have ‘standard’, ‘normal’ abilities to get to meetings, and who don’t get ill and have to cancel at the last minute. Normalcy: it’s insidious.

Picture a non-disabled Glorious Leader of a very organised crew. He probably thinks of himself as a hard worker and values efficiency, good time-keeping and all those other things that non-disabled people can take for granted, because society is built for them and their needs, and doesn’t put up barriers against them. He’s probably never had to plan and cancel in his life, and he certainly doesn’t have to on a regular basis. So he never considers putting in place alternative arrangements for those members who do, so that their issues don’t have to affect whether others can come to group meetings or not. (This could be an easy fix with some creative thinking, by the way.) He simply shames those whose lives are not as simple as his (because society isn’t built to fit their bodies or minds), even going so far as to share their medical details with the rest of the group, expecting that this will stop their ‘behaviour’. But all it does is drive away the people who only wanted to join a simple book group for a little bit of evening fun*. People who can’t shape their bodies around normalcy. People who can’t meet the rules and regulations of our Glorious Leader. Who, funnily enough, doesn’t think that other rules (like the Equality Act) have to apply to him.

I’m particularly interested to ponder the relevance of this being a science fiction book group. This saddens me, but it shouldn’t really. SFF culture has long-standing issues with disability. Every time I try to play in their pool, I find that they want me out (and send me off the one with the mouldy access ramp and the cold dirty water). Read some of David Gillon’s recent work on SFF and disability for more.

Our intrepid heroes are currently looking for a new book group that will fit Nay’s mutant body and mind, where the evil non-mutant overlords don’t get to make all the rules based on their needs while ignoring everyone else’s. It’s a struggle to find one that works. But they fight on! (I’m currently considering going to one that sounds lovely but is down some stairs. Swings and roundabouts.)

Be careful of science fiction book groups in the London area. I will share the name of this book group privately, on request, if anyone reading is looking for a group to join and wants to avoid this one.

Next in this series: the restaurant that turned away my father and his hearing dog in a truly appalling way, and have gone on to behave very badly towards him.

*And it’s not like those of us with chronic illness get to have much of this, for gods’ sakes…

Bill on abstinence-focused sex education, for girls only, passes first reading in the Commons – The F Word

See Liberal Conspiracy for more on this.

I’m with these groups’ bloggers when they say that we have to unite to fight this. I think this means NOW. We cannot let a victim-blaming, misogynistic law affect the way young women are educated and socialised – especially in a society where the rape conviction rate remains horrifically low and one in four women experiences domestic violence. Continue reading

Participate!

Welcome, one and all, to February’s Disability Blog Carnival – the 74th, if you’re counting. I asked you to Participate, and you did. While ‘Participation’ is perhaps not the most exciting of themes, a great set of writers have interpreted it in all kinds of ways. Here, in no particular order, are their fantastic posts. Continue reading

Adventures in Disability, Again

I’m seriously neglecting blogging at the moment (on both my blogs, and indeed at Where’s the Benefit). But life is currently quite a struggle, and I thought writing might help a bit. So here is a new, if brief post.

When they say disability is a full-time job, they’re really not kidding. Yesterday, which was supposed to be a work-from-home day for me, involved three awful encounters with professionals (two on the phone, via The Girl) that left me so exhausted and close to having a complete breakdown that, of course, no work got done.

I won’t go into the ins and outs of the personal budget I’m hoping to get from social services which, while intended to meet my care needs, is very unlikely to do so, because of the ubiquitous ‘computer says no’ situation in which I and my needs are far too complicated for anyone official to begin to grasp. Continue reading

I register for a PhD on Friday.

Would you like some terror with that order of academia?

My house is still really quite inaccessible (as of today there are no longer big holes in the floor, but I keep tripping over the random boxes of crap that are absolutely everywhere, and we don’t have many places to sit down yet). I interview for new PAs (aka carers) on Thursday, and so far only have about four potential candidates (for two posts). We are massively lacking on the furniture front. Oh, and The Girl goes away on Friday, for at least a couple of weeks. In the midst of all this chaos, I’m going to be pretending to be a research student.

Well aware that I have entirely neglected this blog over the past year, I shall endeavour to do better (while also trying to remember to update the equally-ignored research blog). I bloody need to. The disorganisation in my house is reflective of total anarchy in my head, and I have no idea where to start with that. I’m picking a hell of a time to start playing the consummate professional again. Wish me luck.