Thoughts in the Run Up to My (Not) Wedding

I'm getting married on Saturday.

Well.

I'm having a Civil Partnership on Thursday, and then a blessing in a Christian church on Saturday which will be the bit that looks like a traditional wedding - the bit that our family and friends are invited to.

I've been thinking about it a lot. About marriage equality, about privilege, about my life and how it might change.

Firstly, I'm in love, I'm excited to celebrate our relationship, to see our friends and family and to share with them, to use the beautiful liturgy we've put together and to sing some of my favourite hymns, to eat the delicious food, to do a bit of dancing in my swishy dress and decorated wheelchair and then to escape with my wife (sorry, getting carried away again, most civil of partners) for a few days to a wee B and B for a holiday from all this planning!

We live in a country where it is possible for us to have most of the legal rights of a married couple, our close family have been broadly supportive of our partnership, we have the acceptance of some members of our religious group - by no means all - and we can have a religious ceremony - if not in our own church. We are monogamous in a society where polyamorous relationships are often misunderstood and are not easily afforded the same legal protections we will enjoy. We are both white, we are both young, we are both university educated.

I'm really aware that people will notice and think about my impairment in the context of the wedding. People will think that I'm lucky Beanie chose me, that she stayed even when my body fell apart. We deliberately omited 'in sickness and in health' or variants thereof from the vows. She will never have me in health, not in the way that that statement was intended. I can't bear the knowledge that many people think she is foolish for doing this - foolish for shackling herself to someone who has so many needs and so little earning potential.

She can't stand it either. She is exciting about pooling our resources in 'tiny communism' as she's taken to calling it. She will always earn more than me, but we will go into this as equals - both contributing to the pot what we have - wages, benefits, time, energy, passion, compassion - and both taking out what we need.

My partner identifies as a queer lesbian, I identify as queer in both gender and sexuality (and for me it ties in with my disabled identity), although I also identify as female. We are most frequently seen as a cis lesbian couple in a society that invisibilises bi and pansexuality, asexuality, trans* and genderqueer identity (as well as many other gender and sexual identities). We've tried not to use language that excludes anyone in our liturgy, as we have been excluded by the language of so many wedding ceremonies.

 I know that I will need to pace a lot over the weekend, conserve energy so that I can be fully present for the important bits. I also know that there's a lot to do and that Beanie's bad at delegating. I also know that I am incredibly sensitive to being called lazy (to the point that it's called 'the L word' in our home). Need to explain to my mother why lying flat is infinitely easier than sitting is infinitely easier than standing.

We are both children of divorced parents. No top table for us (never relished the thought of a room full of people watching me eating anyway). I have noticed that everyone is trying to be graceful while we try to work out any potential problems.

I do not like to use a title. If I have the option not to use one I won't, if I have to and it's Miss/Mrs then I'll use Miss. Now Ms is more available I choose that. There is no title that I feel drawn to -  I love the gender neutral Mx (Mixter), but I don't feel a personal connection to it. I have to decide what title to put on my official documents this week. I guess Ms, but I really don't want anything. When I graduate, at least Dr is gender neutral, but to use it for non medical things feels somehow elitist. I'd just rather not use one.

I've loved these past few months of planning - choosing vows leading to discussions about what we actually promise to each other, inviting guests and getting in touch with people we haven't seen in a long time, listening to gorgeous music and shaping a future.

We're serving vegan food, with gluten free and nut free options. There's stuff that is tummy friendly for me and plenty for guests with dietary requirements that would normally mean a 'special' meal. We've also tried to choose food that folk used to 'meat and two veg' won't find too alienating. I'm worried that if I have a bad tummy day I won't be able to eat with everyone else. That would be very hard I think - although food is far from the point of the day.

We're trying to not exclude any of our guests. Food choices are one example. The ceilidh band are doing 'bread and butter' calling (this is when they use 'bread and butter' instead of 'men and women', which is more inclusive of queer couples etc). They are also calling a couple of sets for the wheelies. We're having a quiet room for folk to rest / escape from the music / take meds. We've provided a timetable beforehand to allow folk to prepare. There will be large print and non black on white orders of service. This is not 'extra' preparation, it's intrinsic to the preparation. 'What is the most inclusive way we can do this?' I'm sure we will make mistakes and I hope for the wisdom to recognise them and the grace to apologise.

We are already married. To us this ceremony is a celebration of a transition that has happened and will continue to happen. That the word 'married' in this context is controversial makes me angry. I find it hard to be measured on this topic because I think that people who spend a lot of energy talking about why I should not be in love could be putting it to much better things. I also do not believe that I should accept discrimination, but I'll love the sinner (as it were).

I've been scolded so much this week for hoping that the weather improves (that the temperature goes down). I guess I must seem like a killjoy to people whose resting heart rate isn't currently in the 120s. I don't want to collapse on my (not) wedding day. Mainly because I don't want to worry folk than because it's a particularly big deal.

Neither of us have particularly socially acceptable bodies. I have a belly and a bottom and body hair. I have lots of scars. My joints don't behave and I have spots. I chose the dress that I loved, that makes me look and feel amazing - it was one of the first times I've chosen an item of clothing focusing on how it makes me feel rather than what it hides. It feels good (but I'm still a bit worried people, read : my mother, will think I'm trying to make a statement).

Speaking of making a statement : the aisle I can walk that distance, but it hurts. I would rather wheel, but I'm worried that people will read into that decision. It will also be the first time a lot of the guests will have seen me using the chair.

These are the things that whirl through my head with 2-4 days to go. These and all the other thoughts I haven't noticed yet, or aren't coherent enough to be written down. I wonder what it will be like to be a (not) bride in a society with such a fixed impression of what that means - but maybe that's another post all together.

EcoDisablism

I am an activist and campaigner and I learned how to be one from the climate justice movement.

As my mental health and then physical health deteriorated it became hard for me to participate in physical actions and so I did what I could online and in my home - and still do.

This week I realised how distant I feel from the climate justice community I was once part of, and for the first time I realised why.

It is nothing new to say that mostly the climate change movement doesn't consider the reality of disablement and nothing new to say that activists and campaigners often do not consider even basic access needs. (Note that this does not apply across the board and I am not suggesting that it is so)

What was a new realisation to me is how much rhetoric and implicit disablism that I had internalised.

I used to walk everywhere when I started uni - anywhere that was within an hour's walk I walked. I would feel lazy and extravagent for taking the bus - just think about the carbon. And then I had no choice but to take the bus because I was too sore and too tired. And then public transport became harder and harder to manage and I had no choice but to take taxis. And then I had to face the fact that I would have to learn to drive. I didn't learn at 17 because driving in a city that had 'good' public transport links was wrong.

I became vegan for the same reason. I can't cook from scratch any more, and my partner will start work as a junior doctor next year, so I am learning to make my peace with packaged, pre-chopped veg and microwave rice pouches to make it easier for us to eat.

You know what sparked the realisation though? My bendy joints and wonky autonomic nervous system and floppy blood vesssels have been joined by stroppy guts. It's been getting slowly worse, along with the rest of it. The list of foods I can't tolerate is getting longer. Another referral to another specialists, another 3 tablets to add to the 20 I take every day. And I've found that while (most) meat and dairy are on the list of foods I can't tolerate in any quantity (along with gluten, most veg, most fruit), eggs are alright.

Simple, right?

I feel like a failure. Every time I get in a taxi, or eat something non-vegan because it was easy and I can eat it I feel like a failure. I feel lazy, and wasteful and selfish. I would never feel the same about someone else in a similar situation, but I do towards me.

I have internalised this message that cycling is the only acceptable form of transport and that any form of high carbon convenience is absolutely wrong.

Part of that is my own neuroticism, granted, but a large portion of that is that the temptation as a campaigner or activist (or politician, or religious person) is to think and speak in binary. In right and wrong.

Binaries exclude.

It's in the grey and in the intersection that you find climate justice campaigners supporting the #nogobritain campaign - because the more people who can safely and comfortably access public transport, the more we can tackle our carbon footprint - it's there that you find feminists reminding us that climate change disproportionately affects women, and medics talking about the effect of the healthcare industrial complex on our environment as well as the catastrophic health issues climate change causes and will cause. It helps us to remember that if someone is overwhelmed with financial struggles, health crises, persecution, discrimination, if someone is afraid for their life, or doesn't know how they're going to feed their kids tomorrow, they will not be able to care about the fate of the planet in 5, 25, 50 years time.

That's why we need to make climate solutions cheap and easy, why industry needs to do their part and why we need to think really carefully before turning societal problems into individual problems with individual blame and individual solutions.

Maybe I can remind myself next time I get in a taxi that I'm working to make it possible for me to take the bus. And that even the best public transport system possible will not be accessible to everyone and sometimes it's my job to make sure my fellow climate campaigners understand that.

And here I fail to think of a wise and witty closing remark, so you can make one up for yourself...

#nogobritain

I'm sure you'll have heard about NoGoBritain - a campaign about the lack of accessible public transport provision, spearheaded by Tanni Grey-Thompson. Today if you visit #nogobritain you will see people live-tweeting their experiences of public transport provision. If you've not encountered these stories before they could be shocking, but a lot of disabled people could have reeled them off before they were even posted. A lot of public transport is still not accessible for physically disabled people (and a lot, I think, could be done to improve access for people who are learning disabled or have mental health impairments). Here, off the top of my head is a list of some ways public transport is not accessible to me.

Starting with when I was a wobbly walker rather than a wheelie :
- 'perching' benches that don't let you take your weight off your feet were no good for me
- buses with steps = ouch + trip hazard
- bus drivers almost never wait for people to sit down before pulling off (the number of falls this caused me I can't even count)
- this is compounded by wet and slippery floors (maybe can't be helped, but is still an access problem)
- the priority seats fill up first because they're closest to the door, and you'd be astounded at the effort people go to to avoid eye contact when they're sitting in them. People will point blank ignore requests, or simply refuse to move even when they've said that they don't need the seat
- that's if you can even get to the priority seats through the crowd of people standing (I used to leave early for uni to avoid rush hour)
- the number of times I was shouted at, sworn at, threatened, even physically assaulted on one occassion for not 'giving up my seat for someone who needs it' (can't possibly be disabled at 20) would make you disbelieve my earlier point!
- bus drivers here only stop if you've got up an are standing by the door. Ringing the bell isn't enough. Even when there are posters in the bus saying 'stay in your seat until the bus has stopped'
- you have to get to and from the bus stop. This is a problem of joined up design. For example, my local hospital is up hill, about 150m from the nearest bus stop, when a lot of the patient group are likely to use public transport (and the tiny car park makes it the only sensible option) and those going to a hospital are more likely than other destinations to have mobility impairments.
And that's just buses! Other forms have similar issues, but some extra...
- train stations an underground stations often feature stairs quite heavily
- mobility assistance needs to be booked 24 hours in advance, and requires being able to climb into the blue buggies
- underground stations are ridiculously hot and crowded, which as someone who faints frequently makes them no go areas
- when platforms are not put up on the departure board until 5 minutes before departure, or there are last minute platform changes, this is very problematic - I was once knocked over and stood on during a last minute platform change on my journey to a placement
- equally when long distance trains turn off reservations because the train is busy or whatever, this means that those who need a chair are often not able to find one. If you can find a member of staff then they can help, but when corridors are crammed full or they're far away this just isn't possible. One journey I ended up sitting in the luggage rack. Another (particularly memorable) journey was spent sitting on the floor of the toilet.

Since being a wheelie, I face many of the same issues. There is the benefit that no matter what happens I always have somewhere to sit. However, there are plenty more problems to replace that one! :
- Any time I want to use a train, I have to tell the station 24 hours in advance
- This by no means guarantees that the booked assistance will arrive. I now phone ahead to the station I'm going to an hour and half an hour before I get in to make sure they come to get me. Even if I can get myself and my wheelchair off the train without a ramp I generally can't make it all the way down a long platform under my own steam.
- I've had mobility assistance personnel forget about me, attempt to wheel me and the ramp simultaneously nearly pushing me off the edge of a platform, call me 'the wheelchair', dislocate my wrist by starting to push my chair when I'm already pushing, yadayadyada
- I can't get to my closest bus stop under my own steam because the pavement is so cracked and cambered
- I've found that 1 in 3 buses will be successful for me - 1 won't stop or the driver will say the ramp is broken / they have a bad back / there's a pram in it, 1 won't be accessible and 1 will let me on
- Particularly the route running to the hospital that most of my treatment is based out of never runs an accessible bus. I think this is because they are smaller and the roads are small are tight cornered, but the whys don't really matter when they have the same effect. Legally they'll have to solve it by 2015 anyway. In theory.
- Some local bus stops are too small for the bus to actually pull in to the pavement because there are cars parked at each end - this means the bus is too high from the ground for the ramp to work
- Some local buses have a kind of passageway through to the wheelie space, which is too narrow for my standard sized wheelchair to fit through
- On trains without a wheelchair space I just kinda have to sit by the doors. On a busy service this is really scary when a wave of people just rushes at you. Also, I'm at crotch/bum height to some and armpit height to others. Joy.
- I have had people remove to move luggage from the wheelie space (I know the luggage racks are small, but if you brought 2 smaller bags rather than 1 big one it would fit in the overhead rack / under your seat / on your lap). I have had people hem me in with luggage so I couldn't use the toilet for an entire journey. For that matter, the toilets are not accessible for me without assistance.
- There are normally 1 or 2 wheelchair spaces on a train. If they're booked you have to change your plans. If the standard class space is booked but the first class is not, you can't use the first class space without a first class ticket.

I'm sure I've forgotten some.

As well as this, being out in public as a wheelchair user can be quite scary. I've been shouted at and had stuff thrown at me, and it's a year since I've been using a chair at all - 6 months since I've been using it regularly.

For that matter, taxis are rubbish too sometimes, but that's not the point of today. They are the only way that I can leave the house independently at the moment. I'm learning to drive so that I can have some more independence, and not have to rely on taxis which are expensive and unreliable. Ideally I would be able to have my car for some things and use public transport for the rest - I don't want to be reliant on a car - but that own't be possible at the moment. It's too unpredictable, and as someone with chronic fatigue and chronic pain, I can't be as flexible (pun intended) about things like how long I'm out of the house as other people.

Small improvements will be helpful, but not helpful enough. Because my home isn't level access I couldn't store a powerchair or mobility scooter. It's this compound inaccessibility that is really disabling. Getting to an inaccessible bus from an inaccessible home on inaccessible pavement going to an inaccessible workplace. Without the support of my partner to help me use public transport, or money from my parents that allows me to use taxis sometimes (although my activities are very limited by my taxi budget) I wouldn't be able to leave the house at all.

Broombroombeepbeep!

I've started to learn to drive.

Not a particularly big deal, something that most adults in the UK seem to do and take for granted, but it's a big deal to me. I didn't learn at 17 when my friends did for many reasons - environmental, health, time, terror and lack of need living as I did in an area with amazing public transport provision.

Things have changed though - I'm now a 23 year-old who can't walk without pain and can't wheel herself on cambered pavement (pretty much all pavement) for any distance, who spends money she doesn't have on buses for distances most could walk, or taxis for places that are too far to walk/wheel from the bus stop. This includes most hospitals, even some of those which have a bus stop in the grounds. That's not to mention that getting a bus as a wheelie generally means leaving 3 buses before the one you need to get to get there on time to allow for inaccessible vehicles, broken ramps/bad backs/drivers not stopping - annoying but do-able for routes that run every 10 minutes, but impractical when it would mean leaving the house 3 hours before a 9am ward round.

So I'm learning to drive. In an automatic, because my shoulders/elbows/wrists would give before the gear stick. Luckily my parents are paying (a belated 17th birthday present) because it's anything from £3-5 pounds more expensive per hour to learn.

I thought it would be a disaster. My lack of proprioception makes me ridiculously clumsy, and when I panic I curl up in a ball and put my hands over my ears - not the most useful of defence mechanisms.

But it's going ok. I've had 2 lessons, and the 2nd I was driving for 40 minutes out of the hour, tackling traffic lights, mini roundabouts, turning corners and other bits and pieces. My instructor is lovely - endearingly eccentric - and very encouraging. And I'm really, really enjoying it. Unexpectedly. By the end of today's lesson, my self-confidence which has taken such a knocking again of late was practically singing a little song.

There's a lot more to learn, and then there's decisions to be made over a car, and working out who gets the car when because the mrs is hoping to work in places that need a car to get to so that she's not essentially penalised for staying here with me when all the local hospitals are crap and horribly unsupportive places to start work.

But for now I'm smiling at the memories of the lovely little noise the indicator makes when it clicks off after you turn a corner, and turning on the windscreen wipers, and the way putting the hand brake on at traffic lights makes me feel really grown up.

There's something really soothing about pootling along the road at 25 miles per hour and taking your part in the little dance that is a mini roundabout.

I'm sure I'll get bored of it soon, or come up against all the stressful bits, but for now it's nice, and I feel really good about it.

First day back =)

A quick post, but a happy one!

I hadn't realised just how terrified I'd been about starting this placement until I got home today and noticed that the sick feeling I've been carrying around for weeks had gone. So far the placement seems well-organised, the building is new and pretty easy to navigate (although the doors are on the heavy side) and there's a room I can leave my wheelchair overnight which also has air-conditioning, which will be a godsend (I get really overheated on the wards, and it makes me sound and feel like I'm drunk). Simple things make such a difference.

[I have a big brute of an NHS bog standard manual which I can self-propel on polished, flat, indoor surfaces for short periods of time (think browsing in a shop, or moving between beds on a ward round). I can take it in and leave it in the hospital (I can't manage it outside on my own and I can't afford to get a taxi every day until I get my DSA) so that I will have the option for parts of the day that normally involve a lot of standing around, such as ward rounds and bedside teaching. When my lightweight chair arrives I will hopefully be able to use it for the whole working day and I'll be able to manage short distances outside on the flat as well.]

I'm a bit nervous about how people will react, but I'm in a small unit with only a few other students, so I'll be a bit sheltered until I get used to it. It's totally worth it if it makes placement easier to manage.

What's all the fuss about?

When I had a meeting with the head of my year in the medical school this year, he kept saying things like "I think you're being over-cautious, you won't run in to any problems" or "doctors deal with patients with disabilities so they're good at dealing with colleagues with disabilities". I couldn't get through to him that it wasn't that I was worried in case their would be problems at some point in the future, I was there because these problems were part of my daily experience.

So I decided to keep a list of all of the accessibility issues I encountered during one day of placement this week. Obviously things change between hospitals, but this is a fairly average representation.

1) There are 3 steps up from the front door to the entrance hall. There is a level entrance door, but it's not right at the front where I can get dropped off, and it's the other end of the hospital from the paeds ward.

2) The lift buttons are incredibly stiff, so I either sublux my fingers or don't manage to register that I've pressed them every time. I eventually ask a stranger for help.

3) The ward has a keypad entry system, and push button to exit system. If I have one hand on the stick, and one on the keypad, then there's no hands for the door. And the period the door is open is very short so I keep missing it. A nurse takes pity on me and comes to open the door.

4) Once inside the ward, the doors are big, old, fire doors. I can only open the push ones, because when I try to pull them open, my joints give before they do. Again, a nurse helps me out. I would not manage at all in a chair. I'd tip over.

5) The doctors room is not on the ward, but is as often happens, at the other end of the building. This means longer walks backwards and forwards, which add up really quickly to increase pain and fatigue. It also means getting through a tonne of the above heavy doors of evil.

6) The ward has very small cubicles. Each has a bed / cot in for the patient, and an armchair bed for a parent to stay. When there are two doctors, a nurse, and a parent in, there is barely room for me, let alone for me to bring a chair in. By the end of ward round at the start of the week, my seated heart rate was 150.

7) There are very rarely (if ever) staff disabled toilets in hospitals, and this is no exception. I use disabled loos because it saves me getting stuck not able to stand up (as nearly happened in the cinema yesterday). This is an infection control and privacy issue, and often means having to leave the ward and going to the ground floor to find the only appropriate one, especially in a small old building.

8) The toilet door is heavy. The lock is stiff. I nearly can't get out, and there is no alarm cord with which to summon help (not that they're generally heeded anyway).

9) The shortcut from the ward to the dining room involves going down 2 flights of stairs and back up 1, then the same in reverse. This is how the others go to lunch, but I have to go to the lift, and people ask why, and it ends up being a really obvious difference. Consultants also tend to not think before run down 5 flights with a teaching group, too quickly for me to ask where it is they're heading.

10) The canteen is self-service. I asked if someone could carry my tray to the table, because my wrists are prone to giving way, even when one of them isn't taken up with stick. The staff refuse, because it's busy and they "don't do that". The consultant comes over and takes my tray for me, and goes off into a reel of "you're so brave to deal with this" nonsense. I'm not brave. I just get up in the morning and live my life.

11) The consultant was late for clinic, so I had to stand around and wait for him, because the few chairs in the waiting room were full. There aren't enough chairs in the world in general, I've decided.

12) Spent the whole afternoon in clinic during which the consultant took no rest breaks, so as a consequence I didn't either. 4 hours of near constant sitting in a chair without arms means that I have a wicked headache / neck spasm by the end from trying to hold my head up. It's increasingly hard to concentrate.

13) In the clinic, the examination couches were fixed height, so it was not possible to sit down to examine the patients.

14) At the end of clinic we were taking a pile of case notes up to the secretaries. Case files are heavy, even in paeds, and the fastening are stiff and awkward to use, causing more hand trouble. (The delay in getting paper letters out really disadvantages coordinated care, especially for kids with complex conditions. They're currently typing up letters from January clinics). Junior doctors spend a lot of time acting as postmen for Xray requests, and case files.

14) I get a lift home, as I got a lift in, for which I'm very grateful. The bus stop isn't within my walking capacity from the house, and the bus stop outside the hospital is at the bottom of a steep hill leading up to the entrance (as seems to often be the case).

15) In the middle of this I am trying to keep to a good routine for my meds, and food, because my tummy's been so sad recently. This is really hard when you're not in control of your own timetable.

This is one day of placement, not including what happened before or after at home. It gets very tiring.

Infection Control or "oh, I hadn't thought of that"

Would you believe me if I told you that infection control issues are some of the most challenging that I have to face in terms of access?

It's true, dear readers.

You see, at some point before I started medical school, the NHS decided to promote the use of alcohol hand gel before and after patient contact to reduce the spread of infectious disease. I'm sure someone has proved its effectiveness, and that can only be good, the fact that it has left a generation of staff with allergic dermatitis and that it is not effective against C.diff (which doesn't need any help to spread around) notwithstanding. Personally, I would rather there were more sinks, so that I could properly wash my hands around, but apparently people weren't using them or something.

I think it's good common sense to wash your hands between patients. Folk should wash their hands anyway. It's just nice, and not icky. But, here is my problem, as I explained to the last infection control nurse to teach me to wash my hands (I've been taught 11 times since I started med school...) :

I see a patient, I pick up my stick, I wash my hands, I pick up my stick, thus all the patient germies hang around.

She gave me a look that said "this is not on my algorithm", and then said that I should wipe my stick with a Tuffie wipe between each patient. This makes sense, except that Tuffie wipes all seem to come in tubs of 5 million (and with my stick I already have one less hand to carry stuff), that this means I take longer between patients than everyone else, and the ward round waits for no student, and that I would have to buy them out of my own pocket.

I explained what I had been doing - that is putting a surgical glove (which are all over the wards) over the stick handle each time I wash my hands. This seems an imperfect solution - it's really wasteful, the gloves aren't sterile (people will stick their hands in to the box to get a glove without washing first), and it makes me look silly...

She didn't like this idea (but couldn't explain why) and thought I should use Tuffie wipes. Which hasn't happened for aforementioned reasons.

The other option is to put gloves on every time I see a patient, taking them off before I pick up my stick. This combines two of the earlier problems - gloves not being sterile, and carrying something else around in my one free hand - plus the fact that I don't like making patients feel like lepers from the Bible. I found a newspaper article in the depths of the internet that said that this was the approach taken by a wheelie medic - but on wheels you have more capacity for carrying stuff around.

It's confusing and horrible to feel like I'm not perfectly conforming with a policy that people are so obsessed with. People also comment on it left, right and centre - either telling me off, or telling me I've found an ingenius solution.

That's the major IC issue, but there are others. "Bare below the elbows", brought in in Scotland in 2006, means that I can't wear splints, supports or bandages on fingers, hands or wrists. It's also caused problems for colleagues because of scarring.

I've shown here that I don't have simple answers to these problems, and I don't expect anyone else to - it's just that noone's thought about it. It seems assessing the equality and diversity impact of a policy only relates to patients and not staff. Noone has considered wheelies, or stick users, or splints etc. It's a really isolating feeling when everyone you ask double takes, and says "oh, I hadn't thought of that".

Ready? Get set... Surgery

I am not one of life's surgeons. It's medicine all the way for me. Having said that, I came out of my surgical placement this year feeling smarter, more confident and able to present patients a lot more succintly. And I really enjoyed myself. If I can do it, anyone can. Here are some hard won lessons that I will definitely be bearing in mind next year.

On the wards
1) Surgical ward rounds are fast-paced, which makes it hard to sit down at each patient. Consider sitting out alternate patients, or bays in the doctors room. Alternatively, do your own WR over a day. See each patient and review their notes at your own pace. This is very good for learning, especially if you don't peek at the diagnosis before seeing them (except if the patient answers your opening "what was it that brought you to the hospital?" with "I had a massive heart attack"...)

In clinic
2) Surgical clnics are as speedy as the WRs, and doctors tend to walk from room to room as the nurses shuffle the patients so there's not much chance for sitting. Again try seeing alternate patients, or taking regular breaks (starting before you get tired, not after). In certain clinics, for example one-stop breast clinic, it's really useful to shadow one patient through the entire process. This is naturally paced by the queues for each procedure!

Don't always feel the need to stay for a whole clinic. Go to the ward, or the library to read up on what you've seen.

Looking the part
3) Wear clothes that are easy to get in and out of, and compression stockings if you are prone to fainting or getting all oedema-y in the feet when you stand. If you need particularly large, or particularly small scrubs, it's worth snaffling a pair from the hospital buying your own pair (you can get fairtrade ones here).

4) Buy your own clogs if you have musculoskeletal issues. I'm coming to my 6th month of achilles tendinitis and plantar fasciitis after wearing a pair that didn't fit out of the spares bin (even though I was sitting down almost the whole time!). In most places closed toe crocs are fine. You can (at least in my trust) also just wear shoe covers over your normal comfy shoes.

Pictured are a pair of wooden clogs, painted bright orange, against a
grey background that looks like concrete. These would not be practical
for theatre but at all! Picture by garyknight on flickr.

5) I didn't take my stick into theatre, but if I had, I would have made a cover from a pair of old-and-falling-apart scrubs bottoms, or something. I plan to ask a friendly scrub nurse for something suitable next time.
[Update : When I took my stick into theatre, I was just asked to clean it with hard surface wipes. Obviously, I couldn't use it while scrubbed in. When I started using the wheelchair, one hospital let me bring my chair through the changing rooms and just leave it to scrub in, but another made me leave it in the changing room. I talked to theatre sister in advance about when I was going to be where and she helped me sort out a stool to sit on.]

In theatre
6) Scrub in at least once, even if you can't assist. It's a good skill to learn, and it's all kinds of fun. Ask a scrub nurse to show you how to do it properly. If you do assist, don't for more than 10 minutes the first time (even if non-disabled and/or not holding on to a fat flap / retractor). It's harder work than it might look.
[Update : You can sit down while scrubbed in. During my gynaecology placement I assisted for full lists while sitting down.]

7) Ask a scrub nurse or technician for a spare stool if you can't find one (or ask the anaethetist to borrow theirs if they're not using it). Theatre stools don't usually have back support, so it might be worth talking to you supervisor / disability advisor to try and sort something out if that's a problem. [Update : one hospital I had placement in also had higher stools (think barstool height) which are normally used for optho surgery - these were great for being able to see the field while seated. It's always best to chat to the surgeon about where is best or you to sit so you won't be in the way]

If you can't stand at all, or for long periods, then laparoscopic or opthalmic procedures are great because you can sit and watch what's going on on the screen. Most urology surgeries and some breast surgery (axillary node clearance) are carried out seated so you can see the field sitting down. [Update : I was primary assistant on full gynae lists while seated, without any issues.]

8) Pace yourself. Seeing 3 of the same procedure back to back is not the best use of your time. Sit often, for short periods - don't wait until breaking point to have a rest, and between patients go and sit in a more supportive chair in the break room, and have a drink and snack.

9) Drink plenty of water, don't skip breakfast, and don't be embarassed to sit down or leave if you feel dizzy. It's much less embarassing that fainting into the surgical field (luckily I didn't learn that one by experience!)

10) If you don't have a specific anaesthetics placement, spend some time with anaesthetists during your surgical placements. They are very good at explaining physiology (but be warned, they also ask really tough questions about it...), and there are plenty of chances for procedures (venflons, airways etc). Plus there's lots of sitting. Next time I also plan to shadow a scrub nurse for a list.

Questions

Over the next few weeks, I'm going to try and find out some answers to the following questions. If you know the answer, or how I might find out, please let me know in the comments. If you'd like to add something else to the list, then leave a comment and I'll do my best.

- What support is available through the BMA for disabled med students
- How to access the BMA chronic illness matching scheme

- What adaptations have been made for people during their final clinical exams, especially those with pain / fatigue issues

- What some other people's experiences are of being a disabled medical student or junior doctor (if you'd like to write a guest post, let me know)
- What some examples of med schools being good at dealing with disabled students are
- What equipment is available for D/deaf and visually impaired/blind medics (I'm curious)

- How less-than-fulltime FY1/FY2 years are structured, other than the basic nights and weekends on a pro rata basis stuff (for example, will I end up doing 4 foundation years? will I have to apply for the last 2 as a locum, or will they be sorted out for me? etc)
- Whether Access to Work or Occupational Health can be any use in providing adaptations for the workplace, considering how short junior posts are

Written exams : the basics

To celebrate this being the first time in in 16 years that I have had no summer exams (other than an optional mock exam today), here is my exam survival guide. I hope you might find something useful hidden in the depths of it =)

The beginning of the year, or as early as possible :
1) Sit down with someone in the disability service +/- the medical school, and discuss any adaptations you might need. Remember to plan for your worst day. They will be able to tell you what kinds of adaptations they've made for other students. (For example, using a scribe, having rest breaks, or sitting the exam in a separate room)

Before that meeting it would be helpful to think back on previous exams, or to do a past paper in as close to exam conditions as possible, to find any problem areas.

2) Don't let anyone give you the excuse "but when you're working you won't (get extra time, for example)". You might want to say "yes, but it is not your responsibility to make adaptations for me in the work place". This is more relevant for clinical exams, and I'll discuss that another time. It's a tricky one.

Don't let anyone feel like you are gaining an unfair advantage. These are adaptations you need to minimise the impact of your impairment on your exam performance.

The month of the exam :
3) Practice using any unfamiliar adaptations, such as working with a scribe.

4) Learn a quick relaxation technique, and practice is, in case you have a blind panic on seeing the first question (been there, my friend). Some examples are lying flat on the floor and counting slowly to 100, contracting and relaxing muscles working from the feet up, and reciting a funny poem or singing all the way through your favourite song in your head.

The picture shows a window sill, on which are placed a
pile of books, and a big ball of wool with knitting needles
sticking out of it. Outside the window is a lamp-post.

The week of the exam :
5) Make like a marathon runner and tone down your study. Prioritise rest, good meals, stress busting (cinema, craft, coffee with friends, gentle exercise) and some gentle "dotting the Ts" revision. Get your sleep pattern in sync so it's not an effort to be up in time for a morning exam.

The day before the exam:
6) Make sure you know where and when the exam is, and how you're getting there. I get my Dad to phone the morning of every exam to make sure I'm up (not what you might call a morning person...) Give yourself the best chance of sleeping well by using good sleep hygiene (riciculous phrase!) +/- a wee dram.

7) Make sure you've packed the following in 1+ clear plastic bags :
- pens, pencils, rubbers etc
- uni ID badge if needed
- cushions, splints etc
- regular medication and any PRN you might need
- bottle of water (that you can open) and snacks (unwrapped and folded in kitchen roll so you don't rustle)
- lucky charm or something that makes you smile

The morning of the exam :
8) Wake up in time to have a proper breakfast and a drink and leave in plenty of time. Don't look at any work longer than 1 side of A4.

During the exam :
9) Take at least one 5 minute toilet break (if you don't have rest breaks) to stretch your legs, run through a relaxation technique and/or refresh with a snack. I tend to do this after my first plough through, at the switch between types of questions, or if I get a bit freaked out.

10) Think about variety to reduce over-straining any muscles / joints, and to keep your brain engaged. Switch pens regularly so you don't get the dread exam hand cramp, change sitting position (or switch between between sitting / standing / lying down if that is helpful for you) and consider not doing all questions of one type in a block, but rather doing half of one and then starting the other.

What pre-exam routines do you have? Have your med school been helpful in terms of exam arrangements?

Unreasonable adjustment?

I've had a lovely couple of days doing a resus training course. I really enjoyed the content, and getting to know some more people in my new-since-intercalating year.

I had one particularly good conversation which started with a girl asking me "How are you getting on this year, because the stick's a relatively new thing isn't it? If it's not too personal?" We then had a really interesting conversation about the parts of the course that we both find difficult, as introverts. She seemed to instinctively understand, as well, the parts of the course that would be difficult as someone with a relatively hidden disability - such as always turning up in new places and working with staff who haven't got to know me, and therefore don't know that I wobble-and-fall-down if there isn't a handy chair.

She couldn't believe that the medical school (or rather some individuals within it) didn't share her common sense. To her it seemed as obvious as it does to me. As I have discovered, which will come as no surprise to some of you, on a personal level folk within the med school do understand. The problem is not that they can't see the issue, the problem is that they cannot see how to deal with the issue within the current way of doing things, and therefore pretend that the issue doesn't actually exist. It's incredibly frustrating, and humiliating - and, over time, leads you to question whether there is actually an issue, or if it's just you being unreasonable. Sometimes it takes someone else to state the obvious to redress the balance.

Has anyone made you feel unreasonable for requesting "reasonable adjustments"? How did you deal with it?

I've updated my links page into two separate pages, Disability and Medicine, and Other Disability Links I hope you find them useful.

Hooray for showers!

I had a meeting with an OT the other week. As is becoming the norm, she gave me a whole list of things that would be helpful for me, but said that they didn't have funding to give me any of them*. Except for yet another not-skin coloured brace, one size fits none. Then, she had a brainwave. We still have lots of bathboards in our budget, do you have any problems in the shower?

I used to love showers. A long, warm shower at the end of a hard day was one of my favourite things. But over the last year, it'd become almost impossible for me to have a shower in our current set up, with a shower over the bath. On most days getting in to the bath was about do-able, but climbing back out when everything was slippery was decidedly treacherous. Combine that with my propensity to faint at the sight of hot water these days, and my inability to stand still for any meaningful length of time, and you start to understand the number of bruises, popped out joints and concussions I accumulated.

The picture shows a white plastic bath board over a white bath.
The tiles in the bathroom (not mine!) are yellow and blue.

It had got to the point that I was showering maybe once a week, and only with a lot of help, swearing and the aforementioned bruises. Noone (not GP, rheumatologist or physio) thought this was a good enough reason to refer me to OT. I was referred in the end because I "bend my hands in ridiculously disgusting ways", to quote the physio.

Yesterday the bath bench arrived. It is very white (one of two NHS regulation colours, the other being not-skin-coloured) and a bit ugly, but hey. It will make transferring in and out my easier, and will mean I can sit down for most of the shower. Privacy, safety and cleanliness, all in one lump of white plastic. And all for like £30. And the mrs is pleased...it's a much easier way to shave your legs than trying to balance like a stork!

* Some really good ideas though - I bought the beautiful device below, a Breville hot cup, on her recommendation, because I keep dumping the contents of just-boiled kettles all over myself. Means I can have a cup of cherry tea even when I'm not being supervised by the mrs. Yum =)

The picture shows a black and blue kettle-type object,
that dispenses water into a cup placed under a spout,
rather than needing to be poured.