... and why I'm furious about welfare

Posted by kaberett


Today I'm going to tell you a story.

It's not about me, for once: yes, I receive Disability Living Allowance, and yes, I receive Housing Benefit. Filling out the DLA form was one of the most misery-inducing and demoralising experiences of my life: even with 15,000 words of supporting notes, written in a desperate attempt to give them all the information they could possibly need, it took over six months and an appeal for the Department for Work and Pensions, as represented by ATOS, to realise I'm disabled.

[A grinning person wearing a red top hat sits in a wheelchair, holding up a sign that reads "The government says I'm not disabled." This photo was taken during the Lashings run at OxFringe 2012.]

Today the story is about my grandfather.

My grandfather is in his mid-90s. Until two and a half years ago, he cared for my grandmother; since then, he's been living alone in a house with no full-time neighbours, half a mile and change down a grass-and-dirt road. He qualified as an engineer in the 30s - having studied in the evenings around his day job on a Lord's estates. He served in the Second World War, and picks and chooses the stories he tells us very carefully. After the war, he worked as a civil engineer for local councils right up until retirement.

For the first time in his life, he's applying for benefits: specifically, Attendance Allowance. The form's identical to that for DLA. The way we're working this is: he went through it first, then sent it home with my aunt for her and my mother to look over.

To be clear: both my aunt and my mum hold PhDs in the humanities, specifically in languages. They both work for one of the top ten universities in the world. They're about as privileged as it's possible to be in terms of sheer force of highly-educated middle-class ladies: they were the first in their family to go to university, and my grandfather supported them in that - enthusiastically.

So: they went through his form. They annotated it with places it needed expanding. They typed up their notes in fair; and last week, I went home to look over both my grandfather's form and the notes they'd made on it.

For nearly every single question, I added more notes: you should say this; you need to quantify that; is the other true? - because if so, he should be saying it. For some questions, they'd collectively ticked the box figuratively marked "does not apply" - and I took one look and said "actually, yes, it does."

For the first time in his life, my grandfather is asking the government for financial support. He doesn't ask for help: this is painful enough for him in and of itself.

The form heaps shame and indignity on top of that.

For the DWP, asking isn't enough: you have to beg, and they don't even have the decency to tell you this explicitly.

It's not enough to say "well, I sometimes have a bit of difficulty with getting to the loo, but I suppose I cope?" No: you have to go into gruelling, agonising detail: about how long it takes you to get to the loo. About how much difficulty you have balancing. About how many times a day you soil yourself, and exactly how much clean-up and laundry takes out of you - or how much time you spend wearing dirty clothes because you simply can't face it. About how you can't go to the toilet in the night, so you use a potty or commode - and how hard it is for you to empty it in the morning, because if you're carrying a chamberpot you can't use both hands for walking sticks.

Make no mistake: filling out these forms is gut-wrenching, heart-breaking and humiliating. They force you to give excruciating detail on all of the worst parts of your life; there is no space for reminding yourself that you have coping strategies, that it's not always this bad, or they'll decide you're fine all the time.

But they don't tell you this. They don't tell you that to be in with even half a chance of getting appropriate support, you have to focus on worst-case scenarios. My grandfather couldn't tell that from the form and guidance notes; my mother and aunt couldn't tell, either. The only reason I know is that I've done this before: that I asked friends for help, that I knew people who knew to recommend the excellent Benefits and Work, that I've been here and done this and squeezed blood from this stone once before.

This is not fair. This is not equitable. This is no way for a just society to treat people who've dedicated their lives to it, whether legibly and traditionally or outside the mainstream; it's no way to treat people who haven't been able to dedicate their lives to it.

The Welfare Reform Bill isn't making life easier for the most vulnerable. It's not protecting them. If anything, it's making the entire situation worse.

There is no excuse.

I love the welfare state

Posted by kaberett

[Content notes: medical gatekeeping, current government policy, graphic medical details, cancer]

... I think the NHS is great
Forget about your worries and your strife:
We’ve got our - healthcare guaranteed
They will not charge us any fees
The welfare state’ll care for us for life!


And, do you know, I really do love the NHS. I really do love the welfare state. I love receiving DLA; I love my bus pass; I love my wheelchair. (Yes, my wheelchair? Is the NHS' fault.) I love all of the various ways in which the welfare state makes it easier to Exist While Me in our society; I am endlessly grateful that I can leave the house, that I have support to Get Stuff Done, and so on. I have wept grateful tears over being able to call NHS Direct and be told whether or not to go to hospital. I love being able to attend my GP once every couple of weeks in order to catch up on all the things that have gone wrong, tweak my doses, and so on. I love that my prescription medications - I'm on somewhere around 10 a day, ignoring my as-and-whens - only cost me one hundred pounds a year.



When they're ill in the US, their budget's blown,
Bankrupt by doctor's bills, not like at home
GPs and hospitals for free
For every slightest malady.
When you've fallen into the rocks and plants,
Or your kid's put ants into your pants,
Or maybe - tried a few...
The NHS is always there to care for you.


For nearly a year in there, I thought I was going to be moving to South California for grad school. Specifically, I thought I was going to be moving to LA - a country where one of my standard medications isn't FDA-approved, and a city that makes my lungs hate me for a good three months after I move somewhere with better air quality.

The pursuit of life, liberty, and happiness

Posted by kaberett

If you've seen me perform with Lashings, you've almost certainly seen me take prescription medication while on stage. You've likely seen me on codeine. And here's what I can tell you for certain: you have never, ever seen me unmedicated.

Of course, I'm not the only one of us who takes meds on the regular: when my timer goes off in LashSpace I'm not the only one who reaches for tablets. But, well - it was noticeable that for the three-week Edinburgh run, the largest category by volume in my packing at the beginning of the trip was enough medication for three weeks. It's noticeable that in Lashings, as well as in my professional life, people tend to ask me for painkillers first - and that is 100% and entirely the reason that I carry ibuprofen with me at all times. (I'm continually maxing out on a different NSAID, so I can't take ibuprofen without serious health risks - but I like to be able to offer people something slightly weaker than neat opiates!)

Here's another anecdote for you: two weeks ago, I went to a GP at my surgery (never seen her before), and asked - among other things - about the possibility of sleeping pills to help with my insomnia. I was very, very careful to not request temazepam by name. She looked at the list of other things I'm taking - for the record, my daily meds are mefenamic acid, paracetamol, amitriptyline 25mg, citalopram 40mg, Buscopan, omeprazole, Fostair - sucked her teeth, and said that she didn't particularly want to prescribe it, because it can be awfully addictive, you know, and with everything else I'm on...

... and that, ladies & gents & everyone else, is when I had A Realisation.

Well, that's not quite true: it had been fermenting for a long time. But here it is: my approach to medication is not terribly common.

I'm reminded of this every time someone mentions that something is hurting, I offer them painkillers, and they demur: "Oh, no, it's not that bad," or "I'd rather wait to see if it clears up by itself," or any one of a number of other responses. It's not that I think there's anything wrong with that attitude - I used to be very, very good at it myself - but these days... well, I find it baffling (not least because ibuprofen has a rather milder side-effect profile than e.g. alcohol!).

I mean, of course, obviously - it's taught to us by the cultural expectations of a stiff upper lip, and of "musn't grumble"; by "the cure is worse than the disease"; by an ideal of self-sufficiency; and by a media that encourages us to mistrust medicine and medics, quite aside from all the people with good personal reasons to be mistrustful.

I know, intellectually, that I used to understand this at a deep and visceral level. I used to be so invested in the idea that I wasn't really in pain - that I was making it all up - that I'd skip my meds and put taking them off until I was on the floor and immobile with agony, and even then I wasn't sure I wasn't just an attention-seeker.

I know better than that these days.

These days, I know it's a lot easier to keep pain under control from the word go than it is to try to get a grip on it once it's unbearable. I know that for me, once I've started being in enough pain to notice, the vast majority of the time it's only going to get worse. And, importantly, I'm intimately familiar with drug side-effect profiles and the interaction of anything I'm asking for with everything I'm already on, and by the time I'm asking a doctor to prescribe me something I've definitely already made the cost-benefit analysis and I've probably already experimented with the drug in question. (Pro tip: people with chronic pain are often pretty relaxed about sharing meds with others they trust to act responsibly, in the general spirit of "try before you buy" and of "pay it forward".)

So I've put in all this work: on getting past my inhibitions about "making a fuss"; on researching my condition; on investigating plausible management regimes; on working out what might improve my situation.

Off I trot to the GP, and I say... "um, I'm having this problem, er, is there anything at all you might be able to do for that?" And if the GP sounds encouraging, I bimble on to "um, um, um, I've done some reading, um, it sounds like drug X might be useful? Maybe?"

Because here's the problem: I can't afford to be seen as "drug-seeking". I cannot afford the risk of doctors deciding that I don't actually need pain relief as pain relief, but what I do need is weaning off my addiction to the drugs that make my day-to-day life liveable. I can't be an effective self-advocate in medical settings in case gate-keepers decide that I'm a pushy patient - in case I seem too high-functioning, too well, to really need all those drugs.

And it was earlier this week that I worked out why this problem keeps arising.

(Before we go any further, I want to point out that my experiences as wheelchair-using crip are also my experiences as somebody who is thin, and white, and upper-middle class, and has access to medical journals and the education to make sense of the jargon, and covered by mummy's health insurance up to the age of 25. Most of the chronically ill people I interact with are either at (a) my university's Disabled Students' Campaign or (b) Diary of a Benefit Scrounger, i.e. heavily skewed towards activists; both have significant overlap with my areas of privilege. I can't - and don't - speak for all people living with chronic illnesses.)

People with chronic pain - with chronic illness - seem to me to be more likely to be very, very good at judging whether the side-effects and interactions of a new medication are worth the benefit we'll get from it. I've got so many things I need to discuss at every doctor's appointment that by the time an issue makes it to the top of the queue, I've probably been dealing with it for months. I often know what we want - but I don't have an awful lot of time to discuss it in, because I need to talk about three other things this appointment too.

But if you're well? Mmm. If you're healthy, and you're used to uncertain patients who aren't keen on taking pills... well, I can see why I'd come across as worryingly desperate. Mostly, it's because I am.

Just another thing, I suppose, to chalk up to coming from different sides of the cultural divide that is pain.

The Wake Up Call

Posted by Theodor Bishop





Lately I’ve felt pretty down. Real life has been getting to me and the more I reflect on my life the more I feel out of control, despite everything I have achieved in my life and every personal challenge, I still have the challenge of overcoming judgmental others. I’d like to talk to you about something that I would like to describe as the wake up call.

The wake up call describes the moment in which you realise you are being discriminated against or oppressed in some subtle or non-subtle way. The moment when you realise that despite the successes or privileges one may have; or despite the social and legal conversation about an equal society; there is something about you that other people want to put you down for.

I have had my wake up call. I’ve been in many job interviews where I’ve been asked overly technical questions that are inevitably supposed to trip me up. I thought it was notable when I know that other candidates (after speaking with them) were not asked about when a chi-square test was needed. Instead they were asked more general questions that are hard to ‘fail’. There was time when I was interviewed by a BAFTA winning media company. I applied as a researcher to help make a client list for an arts festival. I was asked about Kant’s Critique of Pure Reason for 40 minutes.

The interviewer who by strange incident had a PhD in the Philosophy of character asked me questions completely irrelevant to the skills associated with the advertised job: organising bookings for an arts festival. The interview thought it might be nice to ask me hard philosophy questions to test my abilities. I just didn’t feel that being asked about the Transcendental Deduction in Kant’s B-version of the Critique tested my ability to make a client list and and organise meetings. It made me feel very unwelcome when I was told that this was an interview for a non existent role as a previous intern with the company had already been selected and shortlisting other candidates was merely a technicality to avoid the appearance of nepotism. The wake up call is when I realise how interview panels treat me with antagonism, and expect me to give ‘better’ answers. The wake up call is when I realise how I’m the only non-white person sitting among the other interview candidates and I’m intruding into their native cultural space. I get the distinct impression of discrimination when the reasons I am given for rejections contradicts what was said in an interview. I’m told I have not enough relevant experience, when I was explicitly told that experience is not essential. I’m told in person descriptions and job descriptions that I’m judged by my ability, and not by the degree to which one assents approval by a hiring panel.

I am unemployable because of some perceived ‘otherness’ about me. I absolutely hated when I talked to other interview candidates after an interview with a certain progressive thinktank and heard that the Arts grads were asked simplistic questions such as’ what is your greatest weakness?’ or ‘why do you want to work for us?’. By the same panel I was asked different questions, such as:  ‘can you tell me the relevance of ecological validity on the study of poverty?’ or ‘What’s the best margin of error percentage for a sample size of 500’ for the same role. It’s odd how they ended up as social researchers in a thinktankwithout having to study Quantitative Research Methods in an English Degree. But I’m turned down because of my ‘lack of familiarity’ about a question that wasn’t featured in the job description. These non-transparent hiring processes are a front for discrimination and  I distinctly feel that I’m given harder challenges by employers so that I am meant to fail. It eats at me in ways more than words can describe. It also makes me painfully aware that when I’m going into their office, and seeing the faces of the other candidates, I’m the only non white person there, and I definitely felt that was relevant to the questions they put at me.

As well as being an ethnic minority, I also have a minor disability which I never thought would be a big issue as an adult. I have dyspraxia*, I have vague memories as a child going through occupational therapy, speech therapy and being taken out of mainstream schooling for a day every week. I now realise as an adult how stigmatising it was among my peers and other adults. I realised how different I was percieved when I had difficulty speaking or doing ordinary tasks.

School friends years later told me how they were made aware of my disability when I wasn’t present in assemblies, and that I shouldn’t be treated any differently because I used a computer to do classwork, or had to be taken out of classes from time to time. I must admit that helped with my peers letting me get on when I did school work in ways different to them: when they were using pens and pencils: I had a 90s laptop with a loud dot matrix printer.

I had a great amount of specialist support through most of my education, even when during the mental health issues of my undergraduate years. Many of the Special Educational Needs (SEN) specialists did tell me that I had to be more than what every other candidate had to be in order to get half of their success, and that my ability wasn’t judged. I was told that I would be judged on things like the way I walk or speak, or the way I walk into a room and sit on a chair before an interview panel, or if I have trouble pulling back a table it will be interpreted as clumsiness and a lack of attention. I should have taken that advice more seriously. I also feel a victim to a self fulfilling prophecy, namely that knowing people would judge me harder I have had to work all the more harder in everything I’ve done. As a result many use disproportionately higher standards to rate me negatively than they would for others who are rewarded for less effort. An unintended consequence of the attitude I’ve fostered from the SEN staff’s advice.

My disability wake up call came when I had an interview for a Central Government Department (*cough* Home Office), in which I pointed out on the application form that I required reasonable adjustments in order to do the assessment/interview. I was told that this was acknowledged and I was to write a handwritten test. I made a call to an HR Assistant who dealt with public sector recruitment to clarify if there was a problem with what I told them about my disability. I then reminded the HR Assistant that my disability was related to my handwriting abilities and the individual seemed unconcerned as if I just brought up a non-point or a sentence of silence. The HR assistant was unwilling to make any changes to my application. I asked simply for clarification: “Are you going to put me into a handwritten test when I’ve put on the online form that I require reasonable adjustments because of a condition which affects my handwriting?”. The HR Assistant’s answer: “Yes”.

That was my disability wake up call. This was the moment when all the times when I was told as a child and a teenager about how society’s attitude to disability is changing throughout the 1990s and 2000s to the point that eventually my dyspraxia wouldn’t be an issue. Despite being able to play Bach, despite being able to deadlift my own body weight in Iron; or overcoming severe depression and all my other adversities and achievements; I’ll still always be labelled and made to feel like that kid who was taken out of school to have occupational therapy. At that moment I exploded in anger.

My response was a sense of indignation and my refusal to simply accept this situation quietly. I responded to the HR assistant and said a lot of words that were definitely not safe for work. I said (in cleaned up version): “If you put me into a handwritten test, then I am being discriminated against and you are knowingly doing nothing about this”. It was only after I called their organisation a privatised-outsourced-HR-service-working-for-public-sector-to-cut-costs-hypocrite-organisation-adhering-to-the-farce-of-two-tick-employer-in-the-guise-of-inclusivity-*$*£!!!!!1, that they decided to make some changes to my interview/assessment. Also maybe its more relevant that I threatened to tell his manager and let him know that my smartphone is set to record all my calls and I will find out his name and shame him publically. I can’t complain as to how nice they were afterwards. I’d like to think that their commitment to equality of opportunity (one of the traits listed on the person description for the job I was applying for) rather than their fear of being caught out, that led them to be more amenable to my interview adjustments.

Sometimes my wake up call happens in strange ways, which are less upsetting to me than..bizarre. On some occasions my Indian appearance and long hair with the combination that I have an academic background in philosophy makes some people (notably of the patronising hippie spiritual type) to think that I’m some kind of spiritual guru or mystical wise man because of my ancestry, and bizarrely enough, sexually exotic to certain parties (aforementioned hippie type). I find this patronising that my ethnicity should ever considered a ‘sexy’ thing as if it were to be considered as ‘other’ or a novelty. These things have been less offensive wake up calls but more bemusing when it reveals the kinds of weird assumptions people want to have about me!

Another wake up call I recall was when I joined the LGBT society at university during my undergraduate years. The LGBT soc had a mentorship scheme for those who were opening up more to their sexual identity such as myself at the time. The ‘mentor’ I had was very friendly and pointing out how important it was for homosexuals to be represented in all different areas of society and how wonderful it is to embrace one’s sexuality. However at the moment when he asked ‘you aren’t bisexual are you?’  which followed a disapproving monologue on his views on bisexuality, I felt very uncomfortable about opening up to him and a little bit confused as he seemed so positive about sexual difference. Wake up calls can be weird, and the kinds of oppressions we experience can come from unexpected places.

It’s my uncomfortable truth to realise that I have been discriminated in small ways and large ways. I’ve also experienced privileges which also intersect in weird ways with disadvantage. I’ve heard many other wake up call accounts which differ to my experience. I’ve heard from people who have had wake up calls on things like the prejudice against single parents, non-male gamers, gay airsofters (where homophobic language is commonplace) or religious secularists. When I first heard stories about the antagonism that my friend experiences as a single mother, I had a wake up call about an issue I never really thought about. Sometimes its the casual things that hurt. Sometimes its the institutional things like a lack of role models in our industry or sphere of interest, or a lack of positive media representation of the group that we identify with.  I also recognise that many oppressed people aren’t in a position to take a stand against their discrimination, sometimes that is because they have other struggles such as making ends meet financially, health issues, childcare obligations, or the intolerance of others to listen to an oppressed group.

My wakeup call is unique to me and I realise there are many others who have their own kinds of wake up calls to oppression. Such oppression can manifest in grossly obvious ways while others are more subtle and coded. I also accept that the wake up call can happen within contexts where a person may enjoy relative social privileges in other aspects of their life. I found it really hard to talk about my wake up call, I feel that it might be so much easier to pretend it doesn’t exist or that there are other reasons to explain discrimination. My wake up call was the realisation that decades of disability awareness and real changes in social attitudes have not really gotten far enough, my wake up call was the realisation that the struggle for equality on many fronts is still relevant.

Have you ever had a wake up call? If so, what was it, and how did you react to it? 

**You can learn more about dyspraxia here

Transformative works

Posted by kaberett

this is my skeleton
this is the skin it's in
that is, according to light
and gravity
i'll take off my disguise
the mask you met me in
'cuz i got something
for you to see

– Ani DiFranco, Shameless

Every day of my life is a transformative work.

“She”, they call me, or “What's wrong with your legs?”, they ask, or “We don't really need to tell the extended family this, do we?”

I was assigned female at birth. I started binding in 2009. I was diagnosed with endometriosis in 2010: I'd been symptomatic for six years. In 2011, I changed my name and started using a walking stick (and that's Ani's fault – but a story for another time). In 2012, I started using a wheelchair.

One way or another, I seem to spend an awful lot of my time transitioning: between gender roles, between modes of apparent ability. As I become more visibly trans*, as I become more visibly disabled – as I remake myself into something to live with, rather than something to live through with gritted teeth – parallels become more and more obvious to me.

I'm a long way from being the first person to voice these similarities, and I shan't be the last, but:

That I am using a walking stick today, and was using my wheelchair yesterday, doesn't mean I'm “better”: it means that the awkwardness of the chair outweighed its benefits. That I use feminine pronouns in some situations instead of my generally preferred neuter ones does not, for me, mean that I'm not genderqueer; definitely doesn't mean I'm not trans*.

It just means that sometimes I get tired: of needing to go an extra half mile to get to dropped kerbs; of the Victorian prescriptivist arguments over the epicene pronoun; of needing to remember that car drivers behave strangely when you are in a chair; of the looks on people's faces at my long hair, or when I stand up to fetch something from a shelf.

Sometimes it is easier to wear a mask and play pretend than it is to patrol my borders.

One way or another, I spend a lot of time performing my identities. In public, in my chair, I have the choice of being authentically me – of standing, of lifting my chair up stairs, of not allowing society's assumptions to disable me further – or I can let the fear keep me sitting, keep me smiling, keep me asking for help, keep me from slamming on the brakes whenever anyone touches my chair without permission. I can dutifully bind every day, facing down the chronic fatigue to make sure laundry happens when it needs to for that to not be kinda unpleasant... or I could listen to and respect my body and get misgendered more frequently.

In my experience? The “oh dear it's a wheelchair how do we deal with that” face has an awful lot in common with the “oh god they're going to demand gender-neutral markers in the records aren't they” face. The overbearing concern and the overwriting of my autonomy are common to both: “Well, if you're sure...”

And so I end up performing my identity. I suppose, at least, I'm not without choice in which role to play: like I say, I can be exaggeratedly a good crip, a good genderqueer person, and fit people's expectations; or I can be aggressively and ostentatiously myself and stare down the world with it.

But neither of those are easy options.

And yet. There is – as ever, as in cliché – a third option. And that is to close my eyes, take a deep breath, and make a public space for my private self – to do out loud the work I've been doing inside my head for years.

I was a field geologist. I was a hiker. Recognising that those aren't things I can do any more – that I'll likely never do fieldwork on Mount Erebus, Antarctica; that it's going to be a long time before I get up to a 3000m peak under my own steam again, if it ever happens; that the Hangerer, Austria is going to remain on my list of Unfinished Business – is, yes, a loss. Saying goodbye to my childhood nicknames and to ticking “F” on forms without compunction wasn't all that much easier, honestly.

… did you exchange a walk-on part in the war for a lead role in a cage...

But I couldn't keep it up. A major part of fieldwork is knowing when you're hitting your limits – and how to avoid getting yourself killed. There is only so hard I can push myself, so far I can go, before I have to face up to the fact that I need to stop: this far and no further, or, more often, that far and no further, the line way out of sight behind me. (And I want to note here that a major part of the trans* experience, though thankfully not part of my trans* experience so far, is also how to avoid getting killed.)

Here is what I am learning: how to recognise my boundaries. How to enforce them. How to treat myself with kindness. When to fight, and when I'm better off saving the energy for another day.

Have my body's limits – in terms of physical activity; in terms of tolerating recognition as female – shifted? Yes, they have. But this is not limitation and it is not weakness: I am listening to myself, and I am learning myself.

And in that there is strength.

We are a work in progress, my body and myself, but I refuse to regard myself as defective, as a failure, as a cosmic error to be struggled against and overcome. I'm reframing myself for myself, and for my audience: this is the only body I get, and for some things it works marvellously and for others it doesn't, and that is not a failing.

All it is is variation.

Trans*, queer, disabled: pick one (1) only

Posted by kaberett

CONTENT WARNINGS: cissexism, misogyny, suicide



... or that's what This Is Cabaret seem to think, anyway.

At least according to a review in which they misgender me and assume that my participation in a song about LGBT+ youth suicide... means that it's a song about sexuality and disability.

Well, let me just tell you, it gets better.

Accessibility: not just for audiences

Posted by kaberett


"Is the venue accessible?" we ask: it's rare to be offered the information.

"Oh yes," they say. (Usually.)

So we arrive, and we find that the green room is down a steep, narrow flight of stairs. Or that it's impossible to get a wheelchair (even one as narrow as mine) through the door to the backstage loos - and the nearest disabled toilet is behind locked doors. Or the stage is up a flight of stairs and there's no way to fit a ramp into the venue.

Let me spell that out: accessibility of venues seems, for most people, to be entirely about the question of whether a wheelchair-using audience member can get into the room.

I am not the first crip to get up on stage and perform. I am certainly not the first disabled person to want to get up on stage and perform.  As Galatea pointed out not very many weeks ago, all of us have been here all the time.
You wouldn't know it from the reactions we get.

I started using a wheelchair earlier this year. In a few short months, I've got very, very good at recognising a number of facial expressions that never used to happen to me: there's oh-no-what-happened; there's sorry-mate-I-didn't-see-you; and - my favourite! - there's shit-a-wheelchair-how-do-we-Handle-This.

So. Here's a quick primer:

1. remember that access is not just about wheelchairs.
2. remember that access is not just for the audience.
3. if you're organising an event, ask the venue about accessibility, then include the information as part of your standard event information. Access info should be as easy to find as the date and location of the gig.
4. if you provide venues, and you get asked about accessibility, don't forget to include information relevant to performers.

... and never, ever skimp on gathering and distributing this information because you don't know of any attendees or performers with access needs. It's a really good way to guarantee that we (and our carers, for those of us that have 'em) won't show up: if we don't know or can't easily find out the information in advance, an event is not accessible, regardless of the number of ramps and grab handles the venue's installed.


And this? This is what I love about Lashings: about attending gigs, about performing in gigs, about the support network that's settled into place around me. In short, for me and my needs, Lashings is (relatively speaking - nobody's perfect) accessibility win -- and, if you don't mind, I'd like to summarise how.

• I am given enthusiastic support when I raise the topic of writing grumpy letters to venues that told us they were accessible but turned out not to be.
• We make sure that we have food available that's safe for everyone, when we snack during rehearsals.
• Whenever possible, we set up (and advertise!) quiet space available to both performers and audience.
• Where a show will involve audience participation, seating for people willing to participate and for those who would rather not is clearly marked.
• Access information is included as standard when advertising events, and we've recently started to include trigger warnings.
• Lashers don't blink twice when I ask them to carry my chair up or down stairs for me, or to get me some blood sugar Right Now.
• We dedicate significant chunks of rehearsal time to working out how to rework existing dances so that they actively take advantage of wheelchair dancing, instead of treating the chair as an inconvenience. I like to call this discipline... chaireography.

 ... and then, of course, there's Edinburgh. The Fringe: where up to 15 of us cram into a flat that - to be honest - was not designed for that many people, and try not to implode. This summer will be my first Fringe, and it will be made even more exciting by the fact that a relatively high proportion of those going along will be new Lashers - and I for one haven't yet quite worked out how I fit into the group, and which of my corners need if not sanding then at least some padding.

So what have we done about it?

An awful lot of introspection and an awful lot of soul-baring. We've prepared documents on our access needs - food preferences, mealtime requirements, sleeping arrangements, triggers (from the common to the obscure - one of mine is the phrase "SPOON OF GLORY"...), and anything else we think it would be helpful to know. More importantly than that, we acknowledge that we won't all be able to memorise All Of The Things: that these documents are guidelines and exist to smooth our passage, not as texts to be desperately memorised before the practical exam. We've pre-arranged multiple set-lists, so that if any one person is having a bad pain or fatigue or brain day, The Show Can Go On. (What this means for you is that in order to catch all the material, you need to come and see us at least twice. ;) We've thought about how to arrange our flyering so people who can't stand for protracted periods aren't disadvantaged; we've worked out how to get between venue and flat. We've made sure that we know in advance what the venue is like, so those of us with mobility needs can plan around the reality. For the audience? Last week I created a master-list of triggers for all our acts, and the triggers for the evening's show will be available online and as a poster on the door - and we hope to be able to give more detail in person for anyone with concerns.

Plus I'm being encouraged to write a myth-busting song about wheelchair users and mobility impairments: if there's a better way to make me feel that my disabilities are 100% not An Issue To Solve, I haven't thought of it yet.

Of course, improving the accessibility of Lashings for Lashers (and, for that matter, for you-our-lovely-audiences) is very much an ongoing project: we're not perfect, we do mess up, and we don't (and can't) anticipate all of everyone's needs. Had people thought through all the implications of having a wheelchair user on stage before I showed up? Well, no, they hadn't. But what I've found - and keep finding, over and over - is that people listen to me, and make adjustments as necessary.

Obviously, we'd like to do this for our audiences too: are there aspects of access that we should have thought about but haven't? Anything we can do form that perspective to make our shows more enjoyable for you? Please please please let us know - comments are great, but so are e-mails.

On which note, I'll leave you with the photograph I'd've included last time had I been just a tad bit more organised. 'til Edinburgh!

[A grinning person sits in a wheelchair, dressed all in black except for a red top hat, holding up a sign that reads "the Government says I'm not disabled."]

"The government says I'm NOT disabled"

Posted by kaberett

Those of you who were at our OxFringe shows last weekend will have seen a wheelchair user holding up a sign reading "the government says I'm not disabled". Those of you planning to attend our upcoming shows in London and Edinburgh will also have the chance to see it. (It's not actually very exciting, I'm afraid: duct tape and cardboard and marker pen.)

There is, you will be unsurprised to learn, some backstory to that sign. This is it.
To begin with, let's set the scene: it's the night before the first show, and your intrepid hero has just purloined a marker pen from their baby brother's desk; duct-taped four sheets of A4 card together; and is now trying to fit something pithy onto a (bodged) piece of A2. Remember, please, the constraint that this should ideally be visible from twenty yards.

Nuance, somewhat inevitably, gets lost.