Wednesday 14 December 2011


Edit : I realise a lot of you will have no idea in hell what I'm going about. The Welfare Reofrm Bill is at the report stage in the HoL and they've been voting on some amendments to the bill.

I *think* what we've just heard is this :

Ld Best's amendment 12
Page 5, line 2, after “credit” insert “, subject to subsection (3A),”

goes in here like this
The calculation of an award of universal credit "subject to subsection (3A)" is to include an amount in respect of any liability of a claimant to make payments in respect of the accommodation they occupy as their home.

And amendment 14 adds this to 3A (which the award of UC is now subject to)
In relation to a dwelling of which the landlord is a local housing authority or a registered provider of social housing, regulations under this section shall not permit the housing cost element of the universal credit to be less than the actual amount of the liability in a case where a household has no more than one spare bedroom.”

Which I think means that social tenants can't be penalised for having 'no more than one' spare room.

Sunday 4 December 2011

It's getting better all the time

This has been a good week in many ways. I have the new wheelchair, which is light and comfortable and supportive, I've had another driving lesson, which I enjoyed as much as the other two and I've made a bit more progress on my DLA form. I feel like I'm finally making progress back towards coping at med school when for so long I've been going in completely the other direction.

Progress looks different to how I'd imagined.

When I decided to take this year out I was still fixed in keepingoing mode. In my head I was getting up and going into placement every day, and the problem was that it was leaving me knackered, miserable and ill. The objective reality was very different. I've struggled with the timetable of clinical placements all the way through uni for various intersecting reasons, but this last year especially.

My attendance and learning were enough that I'd been signed off from placement (up until the last one which I don't think I would have) but I felt very much like I was just going through the motions. I was in the hospital for the least amount of time that I could get away with, and even though that meant I was getting a lot of studying done, my confidence around patients had gone. Indeed, until I started using the 'chair just before I left most time on the ward was little more than an exercise in staying upright/conscious.

I don't think you ever fully realise how bad something is when you're inside it. I had in my head that I would be fine once I'm working part-time. Now that I've got a realistic idea of just how little I can manage if I'm pacing to a consistent level I know that it's going to take a lot to get me back to uni in any kind of a healthy way. And it needs to be healthy. I will not sacrifice my health, or the safety of my patients, to hold onto a dream that's not meant to be.

It's going to take :
- help with my morning routine (for example dressing/brushing my hair, moving around because I'm more fainty/fall-y, making coffee/breakfast etc)

- a short commute in accessible buses that go pretty much door to door or a car and a parking permit that will mean that I can stay in a disabled bay all day (and not only for the 4 hours allowed by the private car park people)

- my wheelchair with adaptations to make it work friendly, such as a holder for an alcohol hand gel dispenser and somewhere to store tuffie wipes for my push rims, a trabasack (I'm getting once for Christmas!) for carrying things like mini sharps bins and needles/syringes etc, and a big sign that says

- a cool vest - wards are kept warm which makes my fainting and slurrydrunkyshakyjerky spells a lot worse plus compression stockings and a heart rate monitor

- reasonable adaptation to placement (such as my supervisor contacting me at least 2 weeks in advance of each month-long placement and providing a timetable, only being placed at hospitals within a short commute etc) which are enforced by the medical school

- being really assertive about my access needs, sticking to a routine, taking my meds etc

- and for studying purposes a laptop I can carry, with voice recognition software (this post has taken 9 hours over 2 days to write, as do most), and a chair/table configuration that works

Baby steps of progress are great. They are much better than going backwards. But to sort all of this out will need : a DLA application, social work assessment, application for NHS bursary, DSA assessment, passing my driving test and some hard dealings with the medical school (I think it's going to get to the point of reminding them of their obligations under the DDA via a lawyer...)

There's still so much to do, and it's all exhausting - and all this need to prove that there's something wrong makes me doubt myself over and over again.

At least now I have a realistic picture of what managing my own care is going to take.

Now I just need to eat this elephant (not really, poor elephants!) one nibble at a time...

Friday 2 December 2011

I will not be embarrassed anymore.

When bureaucrats ask me to outline my personal care needs in excruciating detail,
I will say : my partner helps me shower
And we enjoy it
- there have to be some perks, right?
If they find me 'not crippled'
I won't feel like a liar, because I know better.

I will not apologise for being an inconvenience
when I need a ramp to access public transport.
Even if I hadn't planned to travel 24 hours in advance.
Nor will I apologise when someone trips over me,
because they're not looking out for people at wheelie height
(I might apologise if I run over their feet. Unless they really deserve it)

When my speech is slurred and my brain is foggy,
or I need to lie flat to stop fainting
when I lock and pop with each step
like someone's cut a puppet's strings,
when I arrive on wheels with a stethoscope
I will wear a Tshirt that says
"keep staring, I might do a trick"

When I am working part-time,
and colleagues tell me I have it easy,
I will invite them to walk a mile on my knees
or wheel a mile on cambered, cracked pavement
and then report back.
I get to do FY1 and FY2 just like them,
(and FY3 and 4 and even 5
- whatever gets the hours done)

And when fellow 20-somethings
look scandalised by talk of prolapse, constipation
or 'little accidents'
falls, faints and full carrier bags from the pharmacy,
I will be thankful that my friends can see the funny side
and the not-funny side;
who get that honesty is vulnerable but silence is isolating.

Next time I'm on the train, and someone hems me in with suitcases
And says "just ask if you need to get out"
I will smile
"that's fine
- as long as you don't mind asking my permission before you go for a wee"

I will keep talking about the worst times of my life
because stigma and silence kills.

I will be assertive about my access needs at med school,
and take no nonsense from my GP.

I will keep shouting "it's a miracle!"
when people stare at the wheelie walking.

And when Beanie kisses the top of my head
when I'm wheeling down the street
I won't scan faces
wondering what people think of our relationship
from the outside.
I will just tip my head back
and smile.

Fuck narrowly defined normality.
I will not be embarrassed anymore.