Saturday, 24 September 2011

Beanie says :

"I just googled 'medical student carer'

and it said, showing results for 'medical student career'

and now it's refusing to give me any information about myself as a carer as a medical student, and instead is telling me about carers teaching medical students.

*weeps into keyboard*"

Thursday, 22 September 2011

One of those days

I feel like I should blog today.

I have days like yesterday when I feel confident and assertive - days when I feel like a campaigner, days when I feel like we can take on the world, days when I see privilege for what it is, and call people out on it.

And then I have days like today.

Days when I have panic attacks on the bus because my meds aren't touching the pain, days when I spend hours hiding in bed because the stuff I have to do is too overwhelming, days when I am frightened to eat when I'm alone at home because my swallowing is so rubbish, days when I want to drop out because I have had enough of all of the nonsense and all of the banging my head against a wall-ness, days when I put off going to bed because it will make tomorrow come faster.

People don't see me when I have days like this, and I don't talk about them because they're awful, and they make my brain wonky, and they make me feel stupid and lazy and horrible.

I don't know why I'm posting this, other than sometimes I think that the version of myself I present on here is an incomplete one - I mean, it always will be incomplete, such is the nature of the beast, but these attacks of overwhelmed exhaustion are a side of the story I purposefully hide.

Having a routine makes days like these so much easier to deal with, but it feels like I will never get to have a routine. Next week we change placement, so once again I have no timetable for Friday onwards, I have no idea who my supervisor will be, I have no idea who else will be placed in the same ward as me, I have no idea if/when I will have home study sessions which are my major pacing tool. I feel sick at the thought of it.

I love medicine so much. I love the people, I love the science, I love that there's always more to learn. I love all the little firsts - getting my first cannula in, picking up my first murmur, first time a consultant wrote "as above" under my clerk in / management plan and didn't add anything. I love hearing people's stories and walking part of their journey with them.

It doesn't need to be this hard, but as long as it is it's bloody difficult to do anything about it when I (we, others have said the same to me) are so exhausted from dealing with the nonsense. Today it seems insurmountable. I feel foolish for even trying.

Tuesday, 20 September 2011

So this was my day...

- I get the weirdest compliments - apparently I have an impressive range of motion in my sub-talar joint (I resisted the urge to say "you should see my sacroiliacs...") Am now (finally) awaiting custom-made ankle orthosis.

- About 10 minutes in to a teaching session on collapse I nearly fainted, and had to lie down on the floor. It was quite funny really.

- An orthopod (scrub top tucked into trousers, telltale sign) caught my eye as I added the second sachet of salt to my lunchtime fanta, and he looked completely horrified. I think he thought it was sugar, but I don't know which is better in that situation!

Thursday, 15 September 2011

Sometimes it's zebras

Today my medical school did something right. They do that from time to time. Well, not the med school, a consultant from one of the teaching hospitals, but I've decided it can count in the med school's favour.

This afternoon we had a session on SLE (lupus) and a bit of immunology. Part of the session was led by women from a local support group. It was a very good session - both useful in passing exam terms and useful in being a good doctor terms.

It was especially interesting for me hearing these women discuss their experiences of diagnosis. The average length to diagnosis of lupus in the UK is between 7 and 8 years. One of them summed it up well as "my doctor thinks I'm a hypochondriac - one week my leg hurts, the next I've got a rash".

I can't tell you how good it is to hear someone essentially telling my colleagues that "sometimes hoof beats are actually zebras"*. It is something that I think people need to hear. A lot of med school is pattern recognition (weight loss + polydipsia + polyuria = diabetes) and based on excluding the worst possible diagnosis (as in first you consider if a headache's a bleed, infection etc that could kill you today, then a tumour that would be fatal if untreated, then something that's likely to recur / cause serious problems like cluster headaches or migraine, and so on).

It would be ridiculous if we left med school thinking that every joint pain is caused by Ehlers-Danlos, but it is equally ridiculous to me that most doctors attidue to joint pain is "it's not septic, it's not rheumatoid (both potentially very serious if untreated), it's OK". It's bloody not. "It's not rheumatoid, so that's good", to quote the rheumatologist who diagnosed me illustrates this problem quite well. Yes, I am glad that I don't have rehumatoid, but my condition can also be very disabling and can also cause a wide range of systemic effects. I was stunned that she could say that when I had told her how much I'd been struggling - it made me feel completely invalidated.

I have had telltale signs of EDS since I was born, and it took until age 23 to be diagnosed. I first saw a doctor about fatigue at the age of 13, I had been telling my doctor I'd joint pain for 3 years before I saw rheumatology.

The attitude that "it's not one of the big nasties, so it's OK", that a vague constellation of symptoms indicates hypochondria and that a diagnosis is too rare to apply to the patient in front of you, is understandable (we're taught to think like that) and incredibly frustrating to deal with from a patient's POV.

I am looking forward to reading the Rare Disease UK strategy for dealing with the need of those with rare diseases, when it is completed. I don't mind that my GP didn't know what EDS was. I mind that he dismissed my joint pain because he didn't know what was causing it, and I mind that since my diagnosis he has not done anything to learn about it. To my mind those are two good learning points from my case, and the discussion this afternoon.

*It is often said in medicine that "if you hear hoof beats, think horses not zebras", that a common condition is more likely than an uncommon one

Wednesday, 14 September 2011

One wasted journey too many

Today’s post comes saturated with brain fog. (To illustrate, that sentence took 14 attempts) It's also rather long.

This afternoon I had a 2.5 hour round trip to placement in order to go to a clinic which when I arrived (and found it – having been told it was in the clinic area it moved from 3 years ago) was cancelled. No-one was expecting me (despite me being timetabled to be there), so they had no chance to warn me even if they would have thought to.

This was incredibly frustrating, and noone’s fault in particular – some kind of mix up meant that only one patient had been invited.

Obviously this was no big deal, I strolled up to my placement ward and saw a few patients.

Oh no wait.

The building that the clinics are in is a 30 minute walk from the building my placement ward is in (for me). Even if I could have managed that today, it would have meant taking a £10 taxi home, because it would have stolen my spoons* allocated for wobbling back to the bus stop. If I’d have got to the ward (after taking another 30 minutes to recover – that’s assuming I could find a free room to lie flat on the floor of) I’d have been a bit stuck. I had to leave my wheelchair at home, because I thought I was going to the clinic building and so would have no room to leave it in, and it’s too bloody heavy for me to take on the bus at evening rush hour when the driver won’t put the ramp down. Even if I had taken it, I wouldn’t have been able to get it from the clinic building to the ward, because I can barely use it outside. So, I’d have been on the ward without the wheelchair, which, while I’m aware was the situation until before the summer, is now not possible (for many reasons bouncing off each other to create one giant one).

Hence 2.5 hour round trip for no teaching.

I use this to illustrate the one point that I keep trying to raise with the medical school : the level of chaos surrounding our course - new placements every few weeks, no idea of timetable until the first day of placement (and that’s if we’re lucky), never being expected anywhere (despite ‘timetable’), rotating series of placement supervisors who are only interested in completing the paperwork – is frustrating and demoralising for everyone. Those of us who are disabled and/or living with chronic illness have far fewer reserves to allow for this. These 2.5 hours of travel time are not just a waste of 2.5 hours work – they waste more, because travelling takes a lot of energy (especially when everyone turns Atosesque and questions my right to a seat over the right of pretty much anyone else, because young=well).

When Beanie can’t plan her time, has her time wasted, isn’t properly supported on placement it causes her a lot of stress and I am not trying to deny that. When these things happen to me they make me ill by encouraging a ‘boom-bust’ cycle of work, it means that my needs are not fully met on placement because noone knows me and therefore again puts my health at risk, it eats up energy that I don’t have meaning that I can’t do other stuff like shower, or y’know stand up all evening.

This is not something that I can afford in the run up to my finals, and a lot of it would be so easy to fix, but every time I, or other disabled students, make these simple suggestions they either say yes and do nothing, or tell us that we’re wrong – that there is no problem in the first place (or in their ultimate divide and conquer tactic, tell us that ‘the other disabled students are fine with it’). It. Is. Exhausting. And I’ve had enough.

Tomorrow I plan to talk about some of those simple suggestions, and how I plan to make them listen.

*See here for the full version, in short : spoons = units of energy, everyone has a finite limit and disabled people / those living with chronic illness have a lower, and more strictly policed limit than others.

Tuesday, 13 September 2011

Profits Over Justice

Had proper post planned today, but instead spent a couple of hours live-tweeting the 2nd reading of the welfare reform bill in the Lords. If you're interested see #wrb on twitter.

I've also been keeping an eye on #stopDSEi - the hashtag used by those protesting the fact that one of the biggest arms fair in the world has opened in London today. See here for more info.

I can't help but draw parallels between the two - both are focussed on profits over justice, both are in fact spending money gathered from taxes to make lives worse for the majority and better for the minority who stand to gain.

Monday, 12 September 2011

On sex and disability

This one's about sex. If you don't want to read it for whatever reason, then look away now!

I was chatting with a friend yesterday about sex. Now, those of you who know me offline will find nothing unusual in that, being as I talk about sex all the time, but I don't know how many of you know why. I am very open about my sex life, because I have needed others to be open with me in order to navigate my various impairments.

A lot of information that is available about sex and disability is very cis-heteronormative*, and focuses on one specific impairment - which for those like me who don't fall into these neat groupings can get quite frustrating.

I have found some resources very useful - most online, which is normally the case when you're trying to find stuff for 3+ intersecting identities - but it's very hit and miss. There are loads of sites about sex and disability and a lot of them serve to undo the hard work of the few, through cis/heteronormativity, through questioning whether disabled people should be allowed to have sex or preaching involuntary sterilisation, through reducing the issue to the mechanics of overcoming 'wrong' anatomy and physiology.

I have never been asked how my impairment affects my sex life or my relationship. (The fact that I have never been asked how Beanie copes with being my carer, and if she needs any support should also be noted.) Most medics will have seen folk presenting with quite advanced disease or pathology involving their genitals, because they have been too embarrassed to come before. This should never happen.

It is not all the fault of the NHS - when sex education at school is little more than a lecture on puberty and how to use a condom is it any surprise that people have so much shame surrounding sex? There is more to sexual health than avoiding STDs, more to sex than what fits in where, more to sexuality than heternormativity and gender binaries, more to sexuality than sex.

I understand that doctors are embarrassed to ask, and that they don't want to be seen as prying, but I (gently, and sensitively) ask all of my patients with long-term conditions if it affects their relationship and/or sex life, and none have been offended. Obviously it's not a question to ask in the middle of a bustling ward round, and sometimes it is not possible to ensure adequate privacy, but I believe that it is important to try and find time to ask (just as I always ask if patient's have religious beliefs and/or a faith community, and how that has an impact on their experience).

When I consider the biopsychosocial model - a way of considering the holistic effects of a conditon physically, mentally and socially, I add in sexually and spiritually, because although some argue that those fall somewhere under the others, they are not treated as though they are.

The answer to a lack of good sex ed, and consequent embarrassment and shame is not to ignore the issue because it's all a bit awkward (nor is it to be gratuitous and crude - obviously). Giving medical students and doctors some sex-positive sex ed, and outlining the issues that patients may face would be a good start I think.

What are some good resouces you have found about sex and disability?

*Is written from a perspective that cis-gendered hetersexuality is the norm, and therefore that anything else is abnormal (and thus not worth considering / writing about)

Sunday, 11 September 2011

Everybody dance now!

Yesterday I went to the wedding of two dear friends. It was a lovely experience from start to finish (except for the downpour I got caught in yesterday halfway down a hill in the wheelchair, which was slightly hairy!) and I used the chair pretty much the whole time.

Assistance on the trains was organised, and if anything slightly overenthusiastic (I'm sorry my love, but if you try and push me with one hand while also pushing the ramp, I will fall off the edge of the platform!), the accessible room that we stayed in had 3(!) emergency cords (all of which reached the floor I might add) and all the taxi drivers had huge boots (that is not a euphemism).

My favourite part of the day though was dancing at the reception. I normally hate discos, because I feel very self-conscious, and I can't stand up for long enough to meaningfully join in. (Plus in Scotland most parties have ceilidhs, and those are a spetacularly bad idea when your body isn't properly held together!)

Last night I danced for 4 hours straight - longer than anyone else - and, although I ache like hell all over this morning, it was well worth it. To start with, when I wheeled out on to the dancle floor, I had no idea, well, how. I mean, I've seen videos of Wheelchair Dancer in action, so I know it's possible - but I couldn't hope for those awesome standards the first time out! Add in that I wanted to dance with Beanie (to whom I was at boob height) and that the dancefloor was quite chaotic, and I was stumped.

It took a while to crack it, but plenty of being spun round at speed, giggling and a glass of Pimm's later, and I didn't care how silly I looked- I was having too much fun! I do believe video footage exists so I might give you a sneak peek. I wished that my GP could see me being so 'limited' by the chair.

I was a little bit overwhelmed when Bendy Girl alerted me to the fact that my blog post had be mentioned in the Guardian Society Daily. I made a bit of a squeaky noise and shed a little tear.

On a related note, it's good to see more medics speaking out against NHS reforms - I know that there has been a lot of 'grassroots' opposition expressed on twitter, but most of the doctors I've raised it with on placement have barely known anything about it. I've been trying to spread the word a bit, but I just can't seem to find an angle that interests folk. The lack of awareness about the structures and politics surrounding the NHS among doctors is something that I find *really* difficult to deal with. I just want to scream "but how can you not care? RARRR".

I do wish that more of them would speak out against the welfare reforms as well. These are having a huge impact on the patient population, and I'm a bit confused as to why they're being so resoundingly ignored.

Friday, 9 September 2011

Systems can be changed

Firstly, thank-you all so much for the lovely comments about yesterday's post, and to those who published it more widely. It reminds me of how lucky I am to be trusted with people's stories, and how I can best steward those stories. My responsibility to my patient's can never stop at the ward door, even though the overwhelming pressure is to act like it. I am thankful every day for the friends - online and off - who remind me that justice is more than political correctness and that systems can be changed.

And just to make sure that I remember the wider justice issues within the NHS/social care system, today I read Max Pemberton's latest tome 'The Doctor Will See You Now' all in one greedy gulp (well, I did have a 4 hour train journey to kill...). This book covers his year after (what is now) the foundation programme as he starts the process towards specialising in old-age psychiatry. He covers many really important topics, and covers them very well - his passion for his work is evident, and he beautifully illustrates the unjust treatment of older people within the current system.

His book has given me some ideas for posts looking at other issues of justice within the NHS, including :
- The treatment of older people and those with dementia
- Food and the NHS
- The NHS and 'non-professional' carers
- Physical health problems in psychiatric patients
- Speaking out against injustice / whistle-blowing
- LGBTQ individuals and the medical profession
- NHS dental treatment
- Working conditions for auxiliary staff

I also have some public health geekery to throw your way! Don't worry, it's wicked cool stuff, and a good framework for some of these discussions.

Something I also want to explore further is the structure of the NHS. Do you know that the whole way through medical school, noone teaches you about the history of the NHS, how it is structured and governed and so on? I may be showing my cynicism when I tell you that I believe this to be deliberate. It's much harder to fight a system when you don't know what you're up against...

So tell me : where do you see injustice within the NHS? Do you feel you know enough about the NHS as an organisation? Do you know of any good resources for learning more about the NHS? I would love to hear your thoughts =]

Thursday, 8 September 2011

I wish that you could change their minds.

I tell myself that if I brought them to you - the people who suggested these dangerous bills, those who supported them blindly, or with conviction, or against their better judgement, those who had the chance to stand up and say "no", and didn't even show - I tell myself that if I brought them to you, they would change their minds.

You would invite us into your cubicle, and I would draw the NHS-special-issue sound-proof curtains around us. When we were sitting around your bed, I would help you to lift the oxygen mask, and you would tell them what they're doing.

I tell myself that we could explain it to them, and that they would get it, and it would all be alright. But they know. They know exactly what they are doing, and they don't care. Either that or they're in such Westminster denial that they actually believe the stories they spin themselves. Why would they listen to your story when they've ignored everyone else's?

With tears in your eyes you would repeat the stories you've told me - about your care hours being reduced (because the cuts aren't looming in the distance - they're already happening). I will hold your hand as you tell them that your husband can't cope, that he is grey with worry and not able to sleep.

They will say "what about a nursing home?", "how would I pay?" you reply, "and tell me one in my area that would have space for me". (It would have to be close to home, or else you would be trapped there, with no visitors.) They make it sound so easy - they have no idea of the paperwork, and the pleading, and the postcode lottery that can be involved in accessing appropriate care. And being in residential care in your 30s is no easy solution, especially given the standards of 'care' so many receive.

You tell them about the neurologist who diagnosed you, finally, after you were messed around and ignored by so many doctors. She listens to you, she has known you for years, and she has become an expert in your condition and the ways it affects you. One of your biggest fears is that you won't be able to see her any more, that instead you will become a patient of T*sco's own brand neurology. I wish that I could tell you that this would never happen, but it doesn't sound so far-fetched these days.

Your voice steady, you tell them that if your benefits are cut you will kill yourself, that you are both in debt, barely scraping by, and that you would have no other option. You ask them not to take away the little dignity they have left you with - the ability to (barely) feed and clothe yourselves, to keep a roof over your heads.

They will tell you that you'll be fine - that you have "nothing to fear". If I brought them to you, and you told them your story they would say "No, you've got it wrong - it's not you the cuts target, it's the others. We're making the benefits system easier to navigate for you, we're sending the fakers, the manipulators, the scroungers back to work so we have more money to spend on you. We're making healthcare competitive so that they have more incentive to treat you well."

Before we can even process how deluded these people are by their own rhetoric, a camera flashes in your face (the photos will appear on the news websites later - you surrounded by smiling politicians) and they are gone.

[The 'patient' is an anonymised composite, but the stories and fears are very real. The HofL's 2nd reading of the welfare reform bill is very soon. Use this template to write to them, and/or keep an eye out for a Hardest Hit action near you if you're able to participate.]

Wednesday, 7 September 2011


Beanie has just explained less-than-fulltime stuff to me in a way that makes actual sense. Gogocaptainbrainfog. (Although it does seem that to do so has required a more sensible website than any I managed to find on my own.) It looks like we've made our decision, despite the best efforts of the med school to confuse everything. We link applications, go where the wind blows us, hope it's our home deanery so that we have a support network to do this thing, and I apply for less-than-fulltime and hope that wherever I end up is a flexible as it sounds they can be.

Please remind me of this very sensible, and not all that complicated plan the next time I have a meltdown*?

I will aim to return to less panic-stricken, more on-topic posts in the next few days, everything being as it is. Although what with the imminent dissolution of the NHS and the welfare state, there is no guarantee that on-topic posts will be any more relaxing.

*All forecasts seem to indicate 7.30am tomorrow when I'm about to leave for placement.

Tuesday, 6 September 2011

On fuckwittery, and paperwork.

This is a really long post, which is in essence two joined together, but I'm too tired/fogged to figure out a more sensible arrangement.

I promised myself that I wouldn't let this blog make this look easier than it is. Every time someone tells me to 'just' apply for DSA or 'just' take a year out to sort stuff out or 'just' apply for less-than-fulltime work, it cuts a little deeper. I promised myself that I wouldn't gloss it into 10 simple tips to deal with being the 'problem' in the system.

The truth is chaps, within the current system, it's bloody difficult. There will be a lot of fuckwittery and a lot of paperwork. You will have to overcome the urge to punch each person who says "but that's 'just' the way we do things (so deal with it)" and can't understand why that's not justification for not changing something. Med school will make you find your physical and mental limits, and struggle like mad to defend those limits. And a lot of the time, when the training programme looks like it's just going to be a shitload more of the same nonsense you will wonder why you couldn't do something else with your life (before you remember that you'd probably just revisit the same issues in a different form).

The only advice that I, or anyone else can truly offer is this : always keep in mind why it is you're doing this (and recognise that this will change over time), and know what you are willing to sacrifice to get there, and what you are not.

Things are really rough at the minute, and I offer the reasons why as an example of 'just' how difficult it can be to play this particular game. This is a pretty bog-standard worry list.

1) My SI joints are out and my back is in spasm. I have considered phoning the GP to ask for some drug-related assistance on that front, but being as he thinks that the tramadol is far more than a 23 year old should be taking, that seemed pointless.

I still haven't found a way to sort things out with my GP, and now whenever I think about trying to talk to him about anything I cry. [now is not the time to suggest that I 'just' switch GPs] Advice from any fellow medics on this score would be appreciated. I fear that most other GPs would present similar problems.

2) Placement is a 40 minute bus journey away, which is tiring and sore. I can't take the current wheelchair on the bus, because it's too heavy for me to push outside, and to lift (rush-hour buses "don't do" ramps), so that means a £10 taxi journey, which I can't afford because I still don't have DSA (because no matter how easy it is once you've actually applied, my very best efforts are not enough to persuade my mother to sign a form and send it to me so I am as yet un-funded for the year, thus have no funding body to claim from). There are several closer hospitals, but I am in the current one for most of the year. In many ways it's better in terms of input, but that's useless if I'm too much of a zombie to take it all in.

3) Job applications. We have decided (almost) not to apply for special circumstances after I spent the best part of 2 days sobbing every time I thought about it. Not because of me, but because of the stupid, agressive questions that Beanie (which is now the mrs's's's pseudonym, bien sur?) would have to answer. (I just opened the form to find an example am now crying again - see the end of the post for these questions)

BUT we're not quite sure of one thing - if special circs can dictate more than ending up in a specific part of the country we might need them, because I'm having serious concerns about slotting into part of a regular rota (I think that 13 hour long days would end with fainty, vommy junior doctor, and that's not really what you want as a patient...). The deadline is coming up soon, and we have no idea what to do / if it's possible for part-time foundation years not on a pro-rata basis. We can't meet with the person who might know until a couple of days before the deadline (and not for want of trying to bring it up earlier...)

4) And in the middle of this, I'm pretty sure that depression has slipped in without me noticing again. Of course, it's hard to tell amidst fatigue and big'n'scary decisions. I am so scared of getting ill in this particular direction again, because services screwed up pretty dramatically last time, and I'm pretty sure that this fear clouds the waters still further.


And you know what? I am so keenly aware that I'm one of the privileged ones - I'm one of the ones who made it to medical school in the first place - other disabled people, other folk from less-privileged backgrounds (especially now with the tuition fee hikes), other women in some parts of the world - so many folks don't get to this point of being on the inside and bitching about it. That's the part of this I don't talk about often, but it doesn't mean that I'm not thinking about it. I know that the system's not only broken for me.

I'm so tired of fighting fires distracting me from trying to make the course that I love truly and joyfully accessible. That is one of the reasons that I started this blog, and that I'm exploring the possibility of forming a support and campaign group for disabled students within my med school. I have to leave it that bit easier for the next person.

So, here are some of the questions necessary to answer should Beanie wish to apply for Special Circumstances in FPAS as my carer :

"What happened (or will happen) to the person you care for while you were (or will be) on your elective? Who cared (or will care) for them during this time?"
- answer : So many assumptions in one little question! It assumes that everyone can travel for their elective, it assumes that the care-ee isn't doing their own elective...

"What other services does the person you care for utilise e.g. social services, private carers...primary health care team? Have all local support resources been fully considered?"
- answer : Once again, I am also a medical student. I cannot consider "local support resources" until I know where I'll be living. Secondly, non-professional carers often take on that role because outside help does not fall out of the sky. (Remind me to tell you about trying to access a Social Work assessment during another rant...)

"How do you plan to combine these responsibilities with a full time F1 post, which involves irregular shifts, nights and weekends? (Foundation doctors cannot necessarily guarantee to leave exactly at the end of their shift every day.)"
"What arrangements will you have in place for unexpected or planned periods when you will be unavailable? What will happen, for example, if you have a week of nights, you are unwell, or you go on holiday?"
- answer : We don't know, for several reasons. Firstly we don't know if we'll be living here, in which case there is always someone I can call for help if I really need it. Secondly, we don't know how accessible the housing we will be living in is.

However, the main thrust of the answer is that when Beanie is working odd shifts, unless I manage to get a level of DLA/PIP that means I can pay for some help, I will be severely limited in some activities (those that involve leaving the house), and other things will have to work around her schedule (like showering). I will also be at risk when I'm in the house on my own (for example during the night I often fall down and need help to get back up).

It should be pointed out at this point that medical school is anything but a regular schedule or commitment, so anyone applying for special circs as a carer will already have been dealing with these issues to some extent.


If you think that I'm being unreasonable, please note that parents do not get asked any of these questions, or any like them (nor should they). These questions are designed to catch out people who are claiming carer-dom for the convenience of staying put, but surely getting a GP / Social Work to certify that someone is a primary carer would be as effective a way to deal with that (being as if someone was determined to lie their way into this, they could do it anyway...). Although even with that suggestion there are problems, for those who do not have supportive professionals around them to confirm their caring role (this is a big problem when applying for benefits etc).

They also require a copy of a 'care plan'. When will people realise that not all of us who need input from professional services get it? What is the point of Beanie preparing a written care plan, just adding to the work she has to do for me? And plus, the variable nature of my condition would make that bloody difficult anyway.

I'm sure that if I brought these points up with whoever decided on these questions they would say "Oh, we didn't think about the fact that the care-ee could be another medic" or "We need to make sure that people aren't trying to play the system". To me, and others like me, the intent doesn't matter - what matters is that my partner is being made to prove herself yet again to a bunch of strangers, that once again noone has considered our situation as a possibility, that this is just another way to make the application process harder and more complicated for those who don't tick the right boxes.

Thursday, 1 September 2011

My body is radical

"As organizers, we need to think of access with an understanding of disability justice, moving away from an equality-based model of sameness and “we are just like you” to a model of disability that embraces difference, confronts privilege and challenges what is considered “normal” on every front. We don’t want to simply join the ranks of the privileged; we want to dismantle those ranks and the systems that maintain them." [Read the rest here]

You know when you find someone smarter than you who is articulating the stuff that is driving your day-to-day actions, but you don't quite have the words for? Mia Mingus and Stacey Milbern are blowing my mind. I've been reading back through the archives of their blogs.

(Do you guys ever do that? Find a new blog, go to the first post and just read through?)

A combination of all of this reading has my head circling and re-circling the same topic. My body is forcing me to live out my rejection of the values of a capitalist society. It's so hard to extracate oneself from the trap of the dominant social model. How often, when we volunteer within groups who are working to change this model, do we force ourself to work at an unsustainable pace, do we measure our success in terms of money or numbers, do we separate our day-to-day from our beliefs and campaigns?

It is hard for me to accept that I will earn less money when I start work. Hard for me to accept that my partner has to do more for me than I do for her. Hard for me to rest, when everyone else keeps going. I know in my head that reciprocity and community are deeper than a simple give and take, and I am learning to embody that.

My body will not allow me to work all of the hours there are to earn more and more money for my family, but never see them. My body will not let me skip lunch to get more done in a day, and therefore be (in terms of short-term focussed capitalism) a more valuable employee. My body will not let me run for the bus, or run each project into the next without stopping for rest and reflection.

My body is radical.