Sometimes, looking at things from a sideways angle is helpful...

Monday, 17 August 2015

But I’m tired too…

Empathising with people who are ill is natural. When you encounter someone whose experience is outside your own realm of knowledge, then you do your best to relate it to what you know. However, with illnesses that involve pain and fatigue, that can be incredibly frustrating as well. We all know what it’s like to be in pain, and we all know what it’s like to be tired, so people try to relate their own experiences of pain and tiredness to those of someone whose condition involves, or hinges upon, those aspects. However, that actually hurts more than it heals. It becomes a painful reminder of what things are like for people who can rest and recover, and it tells me that they don’t have any kind of a grip on the way I’m forced to live my life, dogged by pain making me nauseous, gastrointestinal problems, bladder problems, bowel problems, lower body paralysis, upper body muscle weakness, and that’s aside from this pernicious “exhaustion” or even using the word “illness” – which for most people brings up the memory of a bout with the flu, not a condition that saps vital areas of your brain and consciousness

I could try and give you a metaphor here to explain my fatigue in ways you could maybe relate to better, by talking about having rocks tied to you, or wading through treacle, but in the end these symptoms simply cannot be explained in ways people who haven’t experienced them will understand, especially when you get into the nuances of exhaustion versus muscle fatigue versus spoons remaining,

At one point I hoped ‘spoon theory’ would work to explain at least one aspect of this to people who don’t understand any other way, with the idea being that you have enough capabilities to do X number of activities (possibly of specific types), after which you will be unable to do anything else. This is by no means limited to those with physical illnesses alone, and I’m sure I’m guilty of the following, but it enrages me when people post on facebook about how spoonless they are because for me spoonlessness means an absolute inability to continue. It means my sympathetic and autonomic systems are shutting down, my brain is begging for my blood, and I am fighting to be conscious – because once out of spoons, out of spoons. Desire has no impact on this and nor does necessity, it becomes a case of having to stop  in my tracks and rest. Things that cause this aren’t challenges like the London Marathon, they’re challenges like transferring to the chair rolled through to the bathroom for me to use the toilet, or trying to sit in my electric wheelchair outdoors for half an hour – the former being (generally) the only time I am able to spend out of bed in a given day – and that alone uses most (or all) of my spoons for the day, depending on how ill I feel.

The loudest voices in the disabled community will be those of us who are least affected by disability, and that’s what’s happened here – well meaning disabled people have used the word to substitute for “energy”, because their energy is limited, and abled people have picked the word up as a substitute for that. I use the term less and less now, as do other disabled people I know, because as the meaning has changed, it’s become impossible to communicate to people who don’t experience it, the degree of illness that it can reflect.

And that’s the key to it all in a way – that this is illness. It isn’t just a normal tiredness but an awful mimicker with no name of its own. My body might be so fatigued I can’t lift my arms or head, or so exhausted that I fall asleep in my tracks – and this is a daily thing. No experience of tiredness outside of illness really relates to it, because it is such a different experience. The closest I can come is the first few moments of coming round from a general anaesthetic, when you’re fighting through a fog even to open your eyes, or blink – but even that doesn’t reflect the devastating impact of this day in, day out sensation. There is no real way of explaining what it’s like using current language, and the one piece of language that felt vaguely appropriate has been appropriated by people who use it to mean the same as “energy”, while for some people, the idea of energy is a mystery, something almost impossible to remember.

I, at least, live in a world beyond energy. I don’t remember when I last experienced it. This isn’t about having low energy, it’s about existing in a world without it, where every movement is an act of will, and has to be prejudged against what I still have to do that day. It isn’t about being tired after a long shift, knowing that a good sleep will refresh you, it’s about there being nothing to refresh you, however much you rest and sleep. Unless you are also seriously ill, you have no understanding of what I’m trying to elaborate. Which, to some extent, makes this activity pointless, academic, a waste of valuable spoons, but I am so tired of people trying to empathise with how I feel, and instead of opening their minds up to an experience they cannot understand, any more than they can understand the feeling of the loss of the use of one’s legs, they close down and try to fit my experience into the little boxes that they have in their head. Well it doesn’t fit there. I’m dangerously sick, barely able to remain in independent living, and there better words you could say than “I’m really sorry you feel so awful – I know I can’t understand it, but I’m here for you anyway.”

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Saturday, 1 August 2015

Why I’m backing Corbyn despite being dubious about parliamentary politics

I don’t necessarily consider myself completely certain that ballot box communism will never work (although not in the near future certainly) but I believe that the far more important work is that which we do in our communities to fight austerity, not the work we do in convincing people to vote for a political party. The promises often made to those who are the most vulnerable in society, that consistently get broken. I believe building community activism, working to develop a political theory based in praxis, and fighting to improve conditions for people abandoned by the political parties is more important, and generally has more of an immediate effect, than focusing on party politics. I do think we should do both, to a limited extent, but I believe that amount of work we do outside the ballot box and in our communities should exceed the amount of work we do within the electoral system.

However, I’m backing Corbyn and willing to put what energy I can into his campaign, and beg people who believe ballot box politics to not be worth doing at all, to sign up as Labour supporters and back Corbyn, for the following reasons:

His campaign (and more the high profile campaign against him winning) has given more press attention to the issues around cuts and austerity. For me, these aren’t just something that I oppose because it’s bad and harms other people, but something that, as someone completely relient on disability benefits for the foreseeable future, defines my life and freedom. The more people backing his campaign, the more the general public is exposed to his arguments against these cuts. The ESA rates for those who are meant to be considered unfit for work currently, and meant to be given extended support to help that change, are being reduced to the pitiful amount given to those unable to find work, ignoring the impact of disability on living costs. The change in the way ESA is tested and fitness to work assessments are being run, has killed people. I’m going through that torturous application at the moment, and to see Labour refusing to oppose the welfare bill was unsurprising given their current state, but Jeremy Corbyn’s defiance of the whip brought the bill, and the reasons he is opposed to it, further into the public eye. Regardless of whether he wins or what he does when he wins, at the moment any increase in membership that can be assumed to be related to his campaign helps raise the profile of issues the press normally ignores, and challenges the typical image of benefit scroungers to some extent.

While the original Syriza platform was far more radical than Corbyn’s, and while the differences between them and Labour are inumerable, the progress of Greek politics does remind us of what happens when a left-wing party is elected. Capital flight, external intervention by bodies such as the IMF, and manipulation of the political system (as in Greece), the SDP’s response to the 1983 manifesto (which lost Labour the election), and Mitterand’s about-turn in France show us that no government with a left wing platform can carry it through fully. They generally end up reneging on their promises partially or entirely.  Corbyn would also, if he won, be in the unenviable position of leading a party whose MPs, generally, are opposed to him. If elected I doubt he could achieve much of what he wants to.

However, the position I’m in, of being disabled and completely relient on the government for survival, means that if he achieves even small changes in the region of benefits, it could change my life entirely. Renationalisation might not be achievable, but changing the benefits system to improve those available for people who are some of the poorest in society, could change my life. So even if other factors prevented him carrying out most of his program, even tiny achievements change lives, and we shouldn’t sacrifice the present for the future, claiming purity of politics. Corbyn could never be a pancea to all the ills of the society, government, and state and I don’t even suggest that people opposed to parliamentary politics put energy into his campaign, but I think becoming a supporter for three quid and ticking a ballot paper for him would improve the chances of a better life for millions nonetheless.

Comrades who disagree completely with our (or any) electoral system, I understand and wouldn’t generally encourage you to vote. In this specific situation however please don’t place a belief in the irrelevance of voting over the first politician I’ve seen who actually stands a chance of improving the situation of the poor and disabled and gives me some hope. I doubt he’ll achieve much, but even the tiniest achievements could offer a future to at least some of us without one.

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Monday, 11 May 2015

After the election the cuts are coming OR Why to protest them

Austerity has been debunked, reasonably thoroughly. Debate remains amongst economists, but that debate is becoming weaker. Or at least, austerity as an economic plan designed to fix the economy after the last financial crash, has been reasonably thoroughly debunked. Now, if Cameron was following that policy, he’d realise austerity was a mistake, and decide not to continue it, but 60% of cuts are yet to come. The first two years of this parliament will be as brutal as the first two years of the previous one. That includes £12bn in welfare cuts, which is 10% of non-pensioner welfare spending. Losing 10% of my care, and benefits, would trigger a financial crisis that would prevent me living independently. I’m aware however, that given the previous government closed the Independent Living Fund – designed to contribute to the cost of peoples care when they have high care needs, they possibly don’t care about the ability of disabled people to live independently. I realise this is not actually how the cuts are being imposed, but it’s worth a thought. Equally, if I imagine one in ten of my friends currently surviving due to benefits and care losing that, it could quite possibly kill that friend. I realise, again, this isn’t how they’re being imposed, but it’s a useful way for me of realising the impact of these cuts. There will be a shift to force people from Employment and Support Allowance to Jobseekers Allowance – I suspect part of this will be mandated treatment for mental illness (with sanctions) for people on ESA as well as JSA. The last attempt to make this shift failed because of successful appeals, so they’ll tighten the criteria. There will also be an attempt to force people off Personal Independence Payments, and massive cuts to housing benefits and things like carers allowance. A freeze on benefits – so in real terms, a cut. Taxing benefits perhaps (ridiculously counterproductive though this seems it’s another way of cutting them further – but they’re already taxed through VAT and DLA/PIP are explicitly to cover the additional costs of being disabled). The problem with cuts to welfare however, is that a certain level is needed for survival – so there’ll be cuts to that too, I fear (and I realise my name is on the list). In the student movement, the fight to defend Disabled Students Allowance has been wonderful, but I’ve failed to see the same gatherings to save the Independent Living Fund, for example. There have been individuals who have done a lot, but there hasn’t been the same universality of responses. We need to work with other movements for disabled people to campaign together – and if we don’t manage to do that networking then we’re not going to achieve nearly as much.

Austerity is an ideological project based on the idea of lower taxes, and less communal support. The idea is each for themselves, to their own personal benefit (and screw everyone else). As long as you’re able to work you’re fine – seems to be the idea. And if you can’t work or can’t find work, then shove off, because the rest of us won’t support you. This is antithetical to everything I believe. I believe we should be in a society that gives everyone the chance to achieve their own personal goals and interests, I believe we should value compassion over cruelty, communalisation over isolation. Maybe I only think that because I’m a beneficiary overall of the welfare and health systems, but I don’t think so. I believe it because nobody can predict the track of their lives, and people that need help should get it. I believe forcibly leaving anyone alone in an adult nappy with the TV on and no remote control, and nothing more to do or think about than that is abhorrent. And that’s what’s happening. Cutting spending and cutting taxes are a redistribution of responsibility from the social to the individual – and I believe as naturally social creatures we rely on each other – locally, nationally, and globally, and that reliance comes with responsibility to support one another across all these spectra. There are lots of ways this could be, can be, and is being done, but the best way in a financial system of sharing the burden of support across a wide network of people is through social services and the benefit system – with the added benefit of the financial burden being borne most by the rich thanks to progressive taxation.

Anti-cuts demonstrations are accused of being non-democratic – as if we democratically voted for Cameron, and therefore voted for cuts, and that means the majority of the population wanted these cuts. Firstly, while the Conservatives won the election, 22.5% of the population voted for him (36.9% voted for them out of the 66.1% who voted). Therefore, more people didn’t vote than voted for Cameron – not voting (whatever the exact reason) being a seeming rejection of the belief that voting can change anything. More than three quarters of the population didn’t vote for him, he was elected on a vote of less than a quarter. There are a number of reasons people cite for voting Conservative, and the cuts are one reason, perhaps, but not all of the reasons, so even voting for them isn’t equivalent to voting for cuts. However, even if one accepts that the Conservatives were democratically elected (or at least as democratically elected as any recent government) that shouldn’t give them the mandate to do what they’re doing. The ideological reason for healthcare free at point of access is that people should have the right to it – a human right, essentially. A government overtly stating that it was going to stop healthcare being free would raise a storm of furious protest (I hope). That right to healthcare is part of a right that I believe needs to be opened up. I believe that people should have the right to independent lives, with dignity. I accept that as the world stands, employment is a necessary evil (though I would posit that we could alter that state with technology to minimise necessary employment), for those that can be employed. The idea that one can be wealthy on job-seekers allowance is ludicrous. It allows most people the means to scratch together a survival, and no more. I believe that right to an independent life, with dignity, should be above the law, and above democracy, and it’s that right cuts to the welfare state are chipping away at, including, dare I say especially, for disabled people, who are often unable to work. That independent life with dignity for disabled people should not be subject to the government of the moment. It should mean people can access the care they need and the financial support they need to live.

The idea of kicking people off jobseekers benefit is that they will find jobs – although this isn’t an endorsement of the idea, but a statement of it (I think more beneficial would be cutting the mandatory application targets and sanctions and instead giving individualised support to people, and working with employers – big employers having to employ a certain percentage of new employees from people currently on jobseekers for example). The idea of kicking people off disability benefits is that…? That they will magically stop being disabled? Disability isn’t a choice, being unable to work isn’t a choice. If the world was better adapted for people currently disabled by their environments, more people might be able to work, but that would require vast housing and infrastructure investment – oh and the government is cutting even further the fund that can help your employer adapt your workplace to meet your needs. However, for quite a lot of disabled people currently unable to work, there could be no practicable adjustments made to make that possible. There is no way I could do an eight hour day without several more to recover, or even a four hour day. That would be the limit realistically, and once in a week. In order to have dignity and independence, I am reliant, not through my own choice, on government benefits and care. Give me a cure instead, I’ll take it and jog straight to finding work. Without one, through bad fortune, I will remain disabled and ill. I will also remain able to only see my future in five year terms, dependent on the government of the day to have my basic needs met. Not through choice, but through ‘democracy’. I don’t think people should have the right to democratically vote away the survival of a group of people – and that’s what’s currently happened. That isn’t democracy, and functions as an enshrined discrimination – one that targets disabled people specifically. So feel free to protest a government that three quarters of the population didn’t vote for, and that is selling off our survival – if anything I would consider protesting (whatever that means for you) a mandate if you care about disabled people remaining alive.

‘These cuts are going to kill people’ is probably a true statement, but as rhetoric, is agonisingly painful – especially when I hear it from people who a) aren’t themselves people whose survival is dependent on services, and who b) do nothing towards preventing these cuts killing people themselves. When the government stops washing me, dressing me, feeding me, helping me use the toilet, helping me leave the house, are you? Or are you going to use that rhetoric and then do nothing. Protesters are needed – people to make public the discontent of millions – but so are people who will react to our situation with humanity, and support us in finding ways of living independently as independently as possible. In the same vein as contributing to the legal fees of protestors is contributing to the survival of people being condemned by the government, whether the contribution is financial or practical (and no, I’m not soliciting donations here). I am lucky at the moment, to have the care I do, but I don’t bother telling myself it’ll continue any more – and that’s terrifying. When you write about the people the cuts will kill, if you know me, picture me, and then do more than write that line – or don’t write it at all, because whilst probably true, I tend not to like my friends predicting my death then doing nothing to prevent it. Hurtful.

One of the challenges I’ve faced over the past year, in which my health has deteriorated has been that I’ve barely been able to study half the normal amount of units. I’ve managed, and I will be graduating, but I’ve not been able to participate in the wider anti-cuts movement, or even the disabled movement, to the extent that I’d intended to. Whether looking at disabled students, or disabled people in general, typically those least able to protest changes and cuts to their care and benefits are those who have the most to lose, and those being targeted by the government. We shouldn’t just fight the cuts that affect us, but those that affect the whole community, and especially those you are able to protest (whatever that means to you), because there are a lot of people who can’t protest in the ways you can, or can’t at all.

From the Institute of Fiscal Studies:

“The overall distributional impact of the Conservatives’ proposals would probably end up looking not too dissimilar to that of the coalition’s policies during the previous parliament, with poorer households losing, the largest gains going to households in the upper-middle of the income distribution but the very richest doing less well.”

A/N: Just a note that protesting could be anything from marching in streets and chaining oneself to things to angry letters to encouraging others to protest via social media, etc. My inability to march doesn’t mean I think others shouldn’t – it means I think they should march for both of us.

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Tuesday, 21 October 2014

Congratulations! You’re more disabled!

Tomorrow, with luck, I will get an electric wheelchair from wheelchair services. With even more luck, it will have powered tilt and recline, and a headrest. These are the things that I need most. That and materials that will prevent pressure sores. I’ve been waiting over a year for this, and I’ve been needing it even longer. It will, hopefully, give me a new lease of life, let me go out on my own (which has been impossible for over a year), let me go to classes more comfortably, and concentrate, make me well again.

That last one is the painful one. Every time I have moved mobility aids, I’ve thought “when I get this, I’ll become well, apart from needing a wheelchair. It will remove all my illness and pain and symptoms and I will be free with the energy to live a normal life”. Every time so far I’ve been wrong, and I’ll probably be wrong again. I only got 5 days warning of the appointment and it was only then that it became real and I realised that I wasn’t going to magically get better when I got an electric wheelchair. Instead, it’s a marker of deterioration, that I can no longer use a manual independently, that I could no longer use crutches, that I can no longer use my legs. It’s a marker of the problems with my body, and it’s a marker of me being seriously* ill.

This has been a difficult few days. I’ve been trying to come to terms with being disabled essentially. I haven’t always had a particularly emotional reaction to mobility aids or to disability, but this time I’ve been all over the place, because this feels different. I’ve gone from activity to passivity. A good friend pointed out that actually I’m currently passive in a manual chair, and will be more active in an electric chair, but somehow I feel like a powerchair is a sign of passivity, and I feel like I’ll get a lot more stares from people, and it’ll feel less like part of my body than the manual does. I’m not losing my manual, I’m just gaining a chair, a tool, to help me live independently, but I don’t want to need help to live independently. I’ve become agonisingly jealous of the students I see every day, who aren’t suffering this, even when they’re suffering other things, because they can still walk, and I want so much to be able to do that. I walk in my dreams, and I wake up to find I can’t. It hurts.

I’m pleased that I’m finally getting the powerchair in many ways, even if my current feelings are emotional and difficult because I know that having it will drastically improve my life, especially once I’m past these emotions. What I’m worried about is other people’s reactions.

I’m sensitive about this. I’m sensitive about being disabled. That feels quite reasonable. I’m sensitive about my disability having gotten worse, which still feels reasonable. I’m sensitive about having a new public marker that shows everyone how ill I am. Still feels reasonable. However, I know that I’m going to face a flood of congratulations, of people feeling positive and happy and pleased about my new wheelchair, and then deciding to express that to me. I don’t think it’s clicked for them why this might feel painful for me – I think people see me with a new tool, and a tool I’ve wanted for a while, and don’t see that I’ve wanted the tool as a result of painful things and that receiving it is difficult. I know I shouldn’t react badly when people congratulate me, but it’ll be difficult to react well. What I’d like is a world where people didn’t feel entitled to my emotions or like they had the right to ask me about the new chair, or tell me how they feel about it. I don’t care how people feel about my new chair, I care about how I feel, and I feel emotionally sore (and it’s going to hurt physically as well as my body adapts to the new shape).

If your urge is to tell me congratulations or how pleased you are, or to react in any way (assuming we’re not very close) then thanks but no thanks, I don’t want to hear it. I want to get on, on my own, and deal with my own mental pain slowly and quietly in my own spaces. If we’re close, you’re allowed to notice, to comment on it emotionlessly, to compliment it, whatever, but please don’t tell me how happy you are, or how happy I should be because right now, I’m relieved, grieving for my lost mobility, fragile, anxious, and more, and I wish people would recognise that.

Now just to hope, however odd and desperate I feel, that I get the chair and that it’s what I need.

*I always feel funny saying I’m seriously ill, but, actually I’ve gone from walking unaided to being unable to use my lower body, and with little strength in my upper body, in four years. My medication is a Class A drug. I probably am quite seriously ill actually.

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Thursday, 17 July 2014

Finding happiness

I’ve been both physically and mentally ill for as long as I can remember, and they do play into each other, but right now, it’s as if my physical illness has taken over to the extent that my mental illness isn’t really that significant an issue because I’m so busy trying to manage my physical health and do as much as I can that my mental health is in a very different place. I know I’ll never be completely mentally well, given how much of my life I’ve spent ill. I also know that my physical health is deteriorating and that I don’t know how far it’ll deteriorate or how I’m going to handle it. So I’ve decided to learn to be happy. That sounds odd. I would never ask or expect it of anybody, and I’m surprised to even feel able to try. This may last a day, before it falls apart, but I’m ill. I may well be ill for the rest of my life. There’s nothing to say there is any kind of cure approaching for me, and there are many signs and symptoms that suggest a deterioration in my condition.

The iller I get, the harder life will be for me, and the more overwhelmed I’ll be. I’ve got important stuff to print and post, important paperwork to do and post, and important bills to pay, and all of this is overwhelming me, even though it’s all I have to do urgently. I’ve got a short essay to write, and that’s all I have to do semi-urgently. I’ve got surgery coming up next week, and a trip away less than a week after it, and I need to at least get the paperwork bits done before I go away, because I’m going to need to rest after it. Alongside this, I’m going to learn to be happy though.

Maybe that’s phrased wrongly – I’m going to learn to find beauty in a world that is cut into drastically by my illnesses, and I’m going to learn to appreciate it, so that however ill I get, and however little I can do at times, I have learned to find beauty and peace with myself.

Am I religious? I’m not sure. I don’t believe in the abrahamic God, and I’m not a creationist, but I do believe prayer can be effective, even if it’s just a form of meditation really.

I like stitching and sewing. I like reading. From my bed I can see roses out the window, and a hedge, and trees, inside the window I can see my darling bonsai tree. I have friends that are always there for me in a crisis, even when I can’t be there for them the same way, and I have a beloved boyfriend who is here for me, and who is committed to me despite my worsening health, who understands that and is willing to work with it because he loves me. I need to be better at telling him how I really feel, and how unwell I really am, but that’s something I need to do in general.

I am privileged for being able to go outdoors in my wheelchair, and smell the fresh air, for all that I need a lot of help to do so, and I am privileged to have a family, both chosen and blood, that are supporting me as much as they can.

There is beauty in the world and if I can’t see it somedays, that doesn’t mean it isn’t there.

I’m not trying to develop hope, because I don’t need that. I don’t want to live in an imagined future where I’m well, for all that it provides a rest when I am tired of the present illness, it is not good for me, it takes me out of finding beauty in my own life, and adds to the feeling that my value is determined on my ability to do things.

I am here, and for that reason alone I have value. I don’t need to create an imagined world in which I’m well to have value, because everybody does, simply for being, for existing. I am not going to fear the future, because that will not make the present easier to bear, and I’m not going to hope for it because that will make the present less real.

Capitalism teaches us that we have value in what we produce, and I can’t produce, so under capitalism my value has been destroyed, but I don’t need to experience the world that way, I can instead see it as having value in my being, deserving support and help simply for existing, and I can see my existence as a hard fought battle when I realise what odds I’ve fought and won against, and how unlikely it was that I would ever make it to where I am.

This is difficult, but when have I let that do more than delay me in my life, and I know that some days I will rely on having learned to find beauty in the world, so I am determined that I will do so, however tired and unwell I am.

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The terror of “what if”

So much of being disabled has always felt like a waiting game, organising papers, waiting for doctors, referrals, diagnoses, misdiagnoses, back, and forth, wheelchair services, appointment writeups, benefit applications, benefit reapplications. A constant run of waiting.

I’m getting worse. I’ve been getting worse over time. I haven’t been getting better and I have been losing mobility, energy, functionality. I’m very ill right now. Maybe I’m having a few bad days, I’ve got an infection, am awaiting surgery, haven’t been eating enough, am having real issues with managing my body temperature, there’s every reason why this might be temporary, but there’s also the fear that it might not be. Lost in academic work, since I returned to my parents for the summer, I haven’t gotten around to organising care for myself for the summer. When I’m here, I get help with some things, and it’s left me in a situation where everything is tolerable so organising care has been left on the backburner, and now quite suddenly I’m unwell, and I wish I had done it before.

There’s such a price to pay, being disabled, and I’m watching the life I expected to have, and the life I had settled to when I started getting ill, both rush away from me. I’m far too ill to imagine working one day a week, and yet I’d planned to do some peacekeeping in Palestine, and then settle down to postgraduate work, whilst doing a part time job as well. When I became disabled I hoped to work a few days a week and do distance learning for a postgrad. Now, I’m hoping to manage to write 1500 words, normally a few hours work, in the next week or two. I envy my first year self, who had the energy to rush through a good piece of work, but I also envy the self that was studying this academic year, always ahead on his deadlines.

For normal people, not being well isn’t too significant, it passes, and I hope this will, I’d planned on hill wheeling and camping for example this summer. However, being chronically ill already, getting worse – however many arguments there are for it being temporary – is terrifying. I couldn’t continue my degree if I stayed like this for long, and my degree is the last thing I have, and my most valued activity. So hopefully this is just a dip and once I’ve had my surgery next Tuesday I can start bouncing back. And I’m not going to think about whether I could be wrong, because all that’ll do is waste energy worrying.

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Tuesday, 3 June 2014

Travelling (while disabled)

I like travelling. I’m the kind of person that never wants to have to stay in one place for too long, that needs to keep moving, and yet I’m also terrified to travel in a wheelchair – so much can go wrong so easily, and it’s difficult to navigate and manage everything I want to do, whilst being careful of my health as well. Health tends to take a bit of a backseat, and I make choices whilst travelling that in retrospect, when tied to my bed for a week, barely dragging myself out to get to the toilet, or make essential appointments, I tend to question. However, there are some barriers I can’t push myself over. I can’t stand or walk, or even crawl. I am wheelchair bound. I can’t self-propel far.

With those in mind, I recently travelled to Barcelona, a city I know and love, but hadn’t visited in a while. With five nights booked, I felt like I was free to really enjoy and appreciate the city, whilst resting as well. I booked, with my partner, cheap flights to and from the city, and a local hotel with adapted rooms (according to, something they confirmed when they reserved me one after I called them to make sure of this. I contacted the airline and ascertained that they knew I couldn’t walk, sorted my packing and medication, and the plans were afoot.

The first crisis was an error of mine in timing that meant we had to leave about three hours earlier than planned, so we rushed the end of the packing and got a taxi to the station. This meant that we had no trains booked, but without any difficulty we found the guard and asked for a ramp. The ramp was in place, and I had the awkward moment at the top of it where I looked at the people in the seats in the wheelchair space until a couple of them moved. Later another wheelchair user arrived, and with the sense of solidarity wheelchair users tend to share in public, we chatted – myself conscious of his strong upper body, self-propulsion, and no need for a wheelchair space or brakes. Miracle of miracles, we were met at Clapham Junction, and got on the next train to Gatwick. There we checked in, arranged to meet our assistance to get me to my seat on the plane at the desk, and wandered around the departure lounge buying last-minute suncream, and lunch. On getting to the gate, I was told that I needed to have let the assistance folk know that I’d made it through security, a note that being told “meet them at the gate” didn’t quite convey in my mind, but after a series of lucky events I made it onto the plane first* after all.

At the other end, assistance were running on Spanish time, and Spanish routes, and it seemed to take hours, but we made it onto a bus (Barcelona buses are excellent, they all have two wheelchair spaces with seatbelts and ramp call buttons, a ramp that goes to and from the street that you can request from inside or outside, and usually have a decent incline into the bus) packed full with suitcases into the city centre (I carried my partner’s suitcase on my lap, he wore my backpack). We checked in at the hotel and I was reminded that the Spanish version of adapted is different to the British version as I squeezed my wheelchair between the beds, tried to navigate close enough to transfer to the toilet (at least it had transfer rails), glared at the shower over a short bath with no seat in frustration, and looked hopefully at the bidet. Still, the hotel was comfortable and in a good area, I was pleased to be back in Barcelona, where much of it is a planned city, with very good dropped kerbs, and we had plenty we wanted to do.

The Sagrada Familia is wonderful for access, with an adapted toilet, and lots of ramps and flat access (as well as the option to skip the queue). The same can be said for the cable car up Montjuic (although you do hit cobbles at the top).

The zoo requires a bit more of a mention. We got in very cheaply and got front row seats with no queueing for the dolphin show, but almost all the barriers between me and the animals were exactly at the height of a five foot seven guy in a helium with a jay basic cushion (or in other words, a wheelchair user’s face). It was incredibly frustrating that I couldn’t see well – the height was obviously designed so small children couldn’t jump over the fences but their parents could lift them to show them the animals without too much effort – but was certainly frustrating for me. A couple of the areas also required special entrances, and to see the lizards I had to move in the opposite direction to the crowd – difficult, slow and frustrating. Whilst it was fun, at the end of the day I was glad that I’d gotten in so cheaply given what I could see.

The old city is a pain in the chair, with lots of cobbles and slopes and things, but was beautiful and well worth a look. Whilst in it, we went to a cathedral whose name I’ve forgotten, and although I had to go in a back door, it was absolutely lovely. I do dislike being sent in back doors though – I feel like it represents a wider attitude to disability, in which we should be kept back, kept hidden, expected to enter through back doors, out of sight, out of mind. I can’t complain too much in Barcelona in general though, and accept that this was an ancient cathedral in the old part of the city.

As well as buses, and dropped kerbs, another thing Barcelona does much better than London is the metro. I used list of accessible stations on the Barcelona metro, and apart from one nightmare of a trip in Plaza Catalunya (watch out, there’s more than one lift, but only one leads to an accessible route to all the platforms (and I didn’t get in that one, meaning dragging myself on my arse up a flight of stairs)) it was invaluable. With it, I could freely travel by metro, and I was given at a tourist information office a map of Barcelona with all the buses and bus routes on, meaning that I had amazing access to public transport. I saved all the money I’d budgeted for taxis, as rather than needing several trips per day, I used a taxi twice in the entire trip, once at night and once when I was completely exhausted. It was lovely though, to be exploring a city and to be able to use public transport.

On our trip back to England we had to leave early because our flight information didn’t tell us what airport terminal we needed – and we were lucky that when we got on the bus we saw a woman who worked for the airline we were travelling with, so simply followed her and got to the right terminal. Our flight was fine, access again worked brilliantly, but at the other end they didn’t unload my wheelchair to the aeroplane door meaning I had to go in an assistance wheelchair (thankfully on my cushion) to the baggage pickup where my wheelchair ended up. I then had to transfer wheelchair whilst sitting on the cushion I needed to also move across. The chair was undamaged, and assistance was easy to get from Gatwick to Clapham Junction.

However, despite telling the staff at Clapham Junction that we were travelling on to a smaller and unstaffed station, there was nobody on the platform for our final train. No station staff waved the train before it off, only the guard, then our train pulled in, and there were still no staff. However, the guard looked down and saw me in my wheelchair obviously trying to get on. “Phew”, I thought in relief, but he walked back inside the train and ignored me. My partner and I got our stuff on, I transferred onto the floor of the carriage, then, with difficulty, back into my chair. The guard didn’t walk down the train, so at our stop I had to get off as well, still with no ramp assistance. The guard called something to us from the end of the train but I wasn’t feeling charitable so I ignored him. This kind of attempt to travel by dragging equipment is frustratingly standard for British trains, and I found myself missing how wonderful Spanish ones were – either the metro, or the intercity trains (which I had used before, and for which assistance was excellent). Still, with something going wrong I knew I was back on home soil.

It’s now been over a week since I got back and I still feel like I’ve been running marathons. I’m paying for this quite incredibly in terms of health, but I also had a wonderful time.

I think London has a lot to learn from compared to Barcelona, before it dares call itself anything but a nightmare for wheelchair users.

*being dragged onto the plane last in an aisle chair is something I find humiliating and uncomfortable, as I lie in the aisle waiting for people to sort their bags out in a fumbling embarrassed fashion

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