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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Fighting to Protect University Mental Health/Counselling Services

I have an article up at the PhDisabled blog, about the media debate currently going over student mental health services in the UK and how they are overstretched and underfunded.

Disabled PhD students are dealing with a lot at the moment. Apart from the ongoing academic disablism that we always face (see the #academicableism feed for many, many examples), there are specific situations dragging us down during this age of austerity. Student Finance England is finding ways to delay and turn down students’ applications for Disabled Students’ Allowance. (Anecdotal evidence includes my own fight to get it back – evidence of my disability that was always accepted in the past, has this year been refused. Talking to others, it seems that I’m absolutely not the only one.) Tuition fees are rising, which further excludes already-excluded disabled students, since disabled people are among the poorest people in society and are only getting poorer under the current government regime. And now there’s a crisis in the funding of mental health and counselling services based in universities.

The protection of our services at universities is a priority in these days of increasing exclusion – especially mental health/counselling services. Not all students with mental health problems would consider themselves disabled, but many would. As I say in the article, UCAS evidence suggests that increasing numbers of people with long-term mental health problems are applying to university in recent years. Meanwhile, non-disabled and disabled students alike deal with the mental health difficulties that can arise from stress at university. And disabled students face a whole lot of stress.

That’s why I’m arguing here that we need to talk about mental health services at universities and how they are under-funded. Unlike some university representatives, who apparently would rather we didn’t.

Cross-posted to Uncovering the Roof

That DLA Form

I fell in the kitchen while holding a hot (well, warm) cup of tea yesterday. I broke a plate and have strained some muscles. Nothing serious, but it could have been. My joints dislocate, and I have a lot of trouble getting up from the floor, and I was alone for the next five hours.

I attended an utterly fantastic disability studies conference last week – the Lancaster Disability Studies conference at CEDR. I plan to write about various things that came out of it, soon. For the purposes of this post, though, I’m musing on how I had to bring my partner as a PA, and how they had to take three days off work (out of holiday time, of course – no unpaid leave for carers), because I no longer qualify for direct payments for carer-type support, for financial reasons. I’m assessed as needing 25 hours of care per week, but I can’t actually have that.

I’m about to start my Disability Living Allowance (DLA) renewal form. For anyone who doesn’t live in the UK, and therefore doesn’t know about this, DLA is a benefit to help you with the costs of disability. It’s not tied to whether or not you work, but to how your impairment affects your need for care or mobility support. The DLA form is a huge, distressing form where you have to detail every part of your life in which you need care support and/or have mobility problems. Everything from how you are supported on the toilet, to what kind of help you need getting on and off buses. It’s mind-blowingly invasive. I was in tears just reading the bloody thing when it first arrived. Last time I had a renewal, I wrote 60 pages on this stuff. As I recall, my DLA form ended up longer than the Master’s dissertation I was also writing at the time.

Margaret Shildrick and Janet Price write about the DLA form and the way it embodies power relations within the bodies of disabled people:

The welfare claimant is controlled not by a display of external coercion but by continuous surveillance and by the insistent demand for a personal accounting that fits the rigidly constructed parameters of disability. The subject herself effects a normalising judgment on her own modes of being… [She] constructs her very selfhood in the process of normalisation. (p.436)

They go on to argue that disabled people then engage in self-surveillance through the DLA form, examining their own life and behaviour in damaging ways.

What kind of self-surveillance? Since ‘austerity’, perhaps more kinds than Price and Shildrick could have imagined in 1999. There’s the benefit fraud hotline that encourages a Big Brother-like, spying-on-your-neighbour approach that means that I wouldn’t dare leave the house without a mobility aid on a good day. (I don’t get seen on a bad day, of course, when I am in bed behind curtains where neighbours can’t see me.) The highly misleading headlines that talk about fraud in inaccurate terms, focusing on benefit cheats rather than on their own role in government anti-welfare propaganda. Other propaganda like the TV programme Benefits Street. The government’s own constant talk of ‘cheats’ as a distraction from their dismantling of the welfare state. All of this is going to be running through my head while I fill in the form that will determine my future circumstances in so many ways…. and it makes me very afraid. I’ve even considered not sending in my renewal form, and letting my DLA lapse. I won’t, because that would be really unwise – but the fact that I’m even considering it is quite scary.

So these two situations, the fall yesterday and the partner-supported conference last week, are on my mind. They’re two of the things that I have to include in my detailed self-surveillance through the form itself, my constructing of myself as disabled. I’m fairly certain that, even if I describe all the dangers, complications, pain and general failures associated with my ‘leaky body’ (to steal a phrase from Shildrick), I still won’t make much sense to the government agency responsible for deciding if I’m ‘disabled enough’ to continue to get my current rates of DLA. If they can even begin to get their heads around the fluctations in my extremely weird set of impairments, which don’t fit the way that disability is socially constructed by the state – as Shildrick and Price explain so well.

Which means my life may be about to change even more radically than when I lost the funding for my carers. I could well lose the car that I lease with my mobility component of DLA, as well as everything else that DLA is a ‘gateway’ for: mostly things that cost ‘the taxpayer’ nothing, but which enable me to access this hostile world full of stairs, and crowds, and buildings I can’t get into, and trains that aren’t on the same level as platforms, and enormous car parks that I can’t walk across, and people who are highly stressful, and toilets that don’t accommodate me, and sorry you have to go round to the back entrance, it’s only five minutes’ walk away

And even if my life doesn’t change in these ways, it has done for many, many people. As the government gradually replaces DLA with Personal Independence Payment (PIP), there is talk of huge numbers of of people losing this crucial allowance that gives them access to the world. Right now, the delays in processing PIP forms mean that hundreds of thousands of people are receiving nothing while they experience delays of at least six months and sometimes more, with people turning to food banks and charities because of the extra costs of disability. Even the government has said that’s unacceptable – but right now, that’s where we are. And if/when this situation is resolved? Significant numbers of people are predicted to lose their disability cost-related benefits entirely.

So I’m only one person, and I’m not that important, really. But with cuts to Disabled Students’ Allowance on the horizon, and the prospect of losing some or all of my DLA, and having lost my funding for carers, it does feel a bit like the state is out to get me. I’m starting to wonder whether I’ll cope well enough to continue with my PhD. I think SJ and I will probably find ways – we’re awfully resourceful, and SJ is amusingly creative when the excretion hits the air conditioning unit.

But I still don’t want to fill in that DLA form.

I referenced:

Price, J. & Shildrick, M., 1999. Breaking the Boundaries of the Broken Body. In: Price, J. & Shildrick, M. Feminist Theory and the Body: A Reader. Edinburgh: Edinburgh University Press. 432-444.