What are you going to do when you finish? #BADD2017

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I'm back at university, albeit a different one closer to home, studying again after my body through a fantastic tantrum the last time I tried it. It's also a general election year again, which is not what anyone expected. Maybe this time politicians will not tell me my life is no life at all but I don't hold out much hope for that.

The university I'm at now has a real focus on employment and one of the highest graduate employment rates in the country. That is great, everyone wants to be able to get a good job when they leave university right? Isn't that the point of going?

Not really, not for me at least. I applied to uni (both times) because I love learning and my brain likes to be busy. That's fine, each to their own, if you went to uni because you want a higher paid job then more power to you.

But here's the rub - I am not employable, not really, not as I am now. I have plenty of skills, I am smart, I'm a self starter, I have a whole bunch of somewhat impressive things on my CV, I meet the person specification for a whole lot of jobs already. But I'm not employable.

Why? Because graduate jobs, entry level jobs, training programmes and internships, essentially any job which I will be qualified for at the end of my degree and I'm vaguely interested in tend to require you to be able to work consistently and for more than a few hours a week. They are usually full time and then some.

At uni I have around 10 hours a week of lectures and tutorials, I manage that, I manage to get my work in and so far I'm doing okay. But I don't have the energy to do a whole lot else besides that. I spend a lot of time in my room resting or doing low energy activities. I'm fortunate I can do that much, last year I couldn't, 18 months ago I couldn't and I have some wonderful PAs who help me do the practical daily living things I don't have the energy for. There are not many graduate level jobs, for people at the start of their career that fit well with that. And not many non-graduate level jobs that my body would be able to withstand either.

So where does that leave me?

I'm still in my first year but we're already being encouraged to look for an industrial placement, to think about our employability, to look at jobs or voluntary roles to do alongside our academic work. And that's fine - until it's not.

It's not fine when the message of employability, employability, employability means I start to question why I'm even doing a degree in the first place. I still love learning, that's not changed and the academic work excites me (even if do I complain about it on twitter a lot when I'm meant to be writing essays). But being beaten over the head again and again with "get a job", "get a good job", "get experience" wears you down.

When the university prides itself on this measure, not academic achievement, not student support or satisfaction it leaves those of us who cannot work, who might never be able to work with a bad taste in our mouths. It's no secret that this rate of employment among disabled people is about less than 50%.
If I'm not well enough to work at the end of my degree am I letting the university down?
If I can't find a job role that I can fulfill without ruining my health have I wasted everybody's time?
If I can't sustain employment will my degree be just another way I have sponged off the state and wasted taxpayers money?
If employers refuse to adapt to my needs or provide support in the workplace will I be counted as a bad investment?

This is not just a problem in my current university, though I've noticed it a lot more here than at my previous one, it's a problem everywhere.
It's a problem because we are treating education as a means to an end instead of an end in itself.
It's a problem because education and especially the use of public funds in education is seen as an investment to be paid back at a later date.
It's a problem because employers expect people starting their careers to have boundless energy and work oftentimes for free or for next to nothing in un/low paid internships.
It's a problem because disabled people are not really thought about at all, either by employers or the careers advisors at university.

When I finish my degree I might not get a job. Or I might. Or I might stay in education forever. Or I might get a job and work myself into the ground trying to keep up with the non-disabled people ad end up really sick again. Or I might stay on ESA and subject to the whims of the DWP for as long as they deem me sick enough. Or I might sit and crochet for the rest of my life. I don't know. I have no idea what my health will be like in then and what my body will be capable of, let alone what employers will accept.

So when you ask me what I'm going to do when I've got my degree I am being honest when I tell you I haven't got a clue. But it shouldn't matter. To anyone.


This post was written for Blogging Against Disablism Day 2017. More #BADD2017 posts can be found here.

Dear Mr Cameron, from someone who's life is no life at all. #BADD2015

Dear Mr Cameron,
Last night on question time you said "a life on benefits is no life at all". I am upset, now I know I'm not your target audience, I have no intention of voting conservative, but for you to disregard my life just like that is plain hurtful. I think I need to tell you a little about it.

This is what makes you say that my life "is no life at all":
2009: My first claim for benefits was at age 15 (three years after the onset of my disability), for DLA.  Had an ATOS assessment. I was turned down and was subsequently awarded it at appeal a few months later.
2010: At 16 had to reapply. Again I was turned down initially, I had an assessment with an ATOS doctor and was still turned down. At appeal 2 years after the original claim I was awarded DLA.
2011: In the mean time my condition changed so I put in a new claim, had an ATOS assessment and this time I received a small award straight away, I was entitled to more but to scared of losing what I had been awarded to appeal. At the appeal for the previous claim this was changed so I was awarded a higher amount.
2013: age 19 applied for ESA. No medical (that's rare), after more than 6 months waiting (for the uninitiated, a decision is supposed to be made in 12 weeks at the time 6 months was at the time around the average wait) I was placed in the support group (the higher rate where you are not expected to work or prepare for work).
2015: DLA claim due to end in the summer I applied for PIP in February. After a stressful assessment (though not as bad as the ATOS ones) in received the decision this week awarding me the highest rates of PIP.

I have never worked. Benefits have been my only income, I don't expect that to change soon. I am one of those people who you said have "no life at all" . Based just on my income, on the information attached to my national insurance number, you have written me off. You have reduced me simply to the source of my income.  According to you I am nothing else my life has no other qualities, my life is not a life.
What my NI number can't tell you is what it's happening outside of my bank account.

In no particular order:
I am a university student (a politics student no less)
I am an activist
I am a Christian
I am disabled
I am a leftie
I am a volunteer
I am a democratically elected officer at my student union
I am a tweeter
I am a reader
I am a hugger
I am a listener
I am a thinker
I am a problem solver
I am a friend
I am a little sister
I am a big sister
I am a daughter
I love pretty things, flowers and glitter
I am a people person
I am an animal person
I am a letter writer
I love to cook
I sleep a lot (and I mean a lot)
I like to see other people happy, I try to make it happen
I need help to do, be and enjoy all of those things
I am a recipient of social care

Mr Cameron my life(which is not a life) is wonderful and varied and full. My life (which is not a life) is hard and complicated and needs a lot of planning. My life (which is not a life) is beautiful, and fun and exciting and boring. My life (which is not a life) is exhausting and colourful and full of love. My life (which is not a life) is a lot of things but I can assure you it is definitely a life. It is a life worthy of respect, a life that ought to be viewed as a whole not reduced to where I get my money from.

By characterising me as having no life at all you have written me off and those like me off as not worthy of your attention as voters, just as an object of scorn. You have used me as an example of the perils of social security, you have invited people to look at me and condemn my life (which is not a life), you have opened me up to ridicule and abuse. Sure there's always the get out clause "I didn't mean you, I meant all those other people" but how many of those other people are like me?* You don't know, the media don't know the public don't know because you don't care have decided that the only important information about us is the our status as claimants. For you people are either shirkers or strivers there is no in between and there is no possibility that people can be complex. People are one or the other, that's it.

Someone might start their adult life (which is not a life) on benefits by claiming carers allowance at age 16, they're not able to claim it under 16 regardless of the level of their caring responsibility.
Someone might start their adult life (which is not a life) on benefits by claiming tax credits because their pay is ridiculously low.
Someone might start their adult life (which is not a life) on benefits by claiming job seekers allowance because despite leaving school with okay qualifications they cannot find a job easily.Someone might start their adult life (which is not a life) on benefits for any other number of perfectly valid reasons.
For me and many others the reason I depend on benefits in order to live my life (which is not a life) is disability.
Guess what, all these lives are complex and messy and beautiful and hard. Their lives are all lives. You do not get to dictate who has a "life". That is not okay. You cannot say who's life is worthwhile and who's life is not. To do so is dangerously close to saying something else, it almost sounds like you're talking about who should get to live.

In truth though my life (which is not a life) could be taken as a social security success story. Social security benefits have meant I can make a contribution to society as my impairment and the disabling barriers of society will allow, without worrying about whether I can afford to eat.
Sincerely,
Someone Who's Life is No Life at All
Someone Who's Life is a Life and Worthy of Respect as Such.
Rebecca

*That's no judgment on the people who aren't like me, just a response to the comment I always get when I raise this issue.


This post was written for Blogging Against Disablism Day 2015 #badd2015 more BADD posts  can be found here.
I had planned to post a blog on housing but right now this is more important.

[The Blogging Against Disablism Day graphic, depicting a colorful grid, with each square showing a different colored stick figure person, like the ones for the restroom signs.  Some of the stick figures have mobility aids, and one of them is just a handicapped symbol.  At the top it says "Blogging Against Disablism"]

Decisions and priorities.

This week I made a decision. It wasn't a nice, easy, fluffy, reassuring decisions. Although when someone says "I made a decision" very rarely is it an easy decision to make. No, the statement of having made a decision usually means there was careful deliberation, careful thought and it wasn't an easy decision that could be jumped into quickly without much thought.
The sort of decision which require you to say that you have made a decision are never easy.

The decision I made this week was the sort of decision which leaves you feeling raw, like someone has furiously rubbing away at your insides with sandpaper. It was the sort of decision which leaves you exhausted, mentally and physically. The sort of decision which leaves year mind full, your heart heavy and your eyes wet. The sort of decision that leaves you with a hole in your gut, ready to be filled up with something but exactly what you're not sure.

What was the decision? That I can't go on as I am. That I am not willing to further sacrifice my physical and mental health in order to pursue higher education. Why is it such a big issue? Isn't it a fairly logical sensible decision? Maybe but to explain why it was so hard I need to take you back a little way to 2010.

In September 2010 I started a full time photography BTEC level 3 (for people out of the UK this is a vocational qualification considered roughly equivalent to A level exams taken at age 18). When I say full time what I mean is 3 full days per week in college, plus an hour or so travelling each way. I enjoyed it, I was doing well. But by October half term, having done 6 weeks at college, I was completely exhausted. I rested on my weeks holiday and not a lot changed, I was still exhausted and I still wanted to do my course. Being the stubborn person that I am I went back after the holiday, the travel plus the activity required in the course, plus some other big stresses meant that by November my health had completely crashed. I couldn't stand for more than a few seconds, I couldn't get upstairs to bed, pain levels skyrocketed and I couldn't cope with anything except minimal levels of light and sound. I got my first wheelchair. My immune system was shot and that winter I got virus after virus culminating in appendicitis in February and an infection in the surgical wound. The college did all they could to support me but I just wasn't well enough to go back and do the hours I would need to get the work done. I finally dropped out (after a very low attendance rate) in March.

I ignored what my body was telling me and things just got worse and worse. It took me two years to even get close to where I was in the Summer of 2010. It's a pattern that has repeated too, I ignore what my body is doing because I'm prioritising education and my health crashes. I lose function, I get more pain, I'm more anxious, I get more viruses the whole lot. Even if I'm just ignoring it for a short time like an exam period (see hospital stays summer 2011 and summer 2012). I'm not willing to go back there again if I can avoid it.

Right now I see a lot of the same patterns and symptoms occurring as happened in 2010. I'm gradually getting more and more exhausted; I'm having trouble with light, noise and people; I'm putting a load of pressure on myself; I'm falling behind in work; I'm losing some physical function; I'm getting really anxious and I'm putting education before my health. It is not okay for this to carry on and something has to change.

The problem is that when I'm at uni I need to do three sets of things. 1) Daily living tasks, which includes directing carers; it is a lot harder to do this at uni than it is to do it at home. 2) Academic work: reading, writing essays, attending lectures and tutorials etc. And 3) Do enough Social Stuff to keep anxiety and depression to a minimum. But I can't do all of them, it just hasn't worked - using every scrap of energy I've got I can maybe do half of what I need to do in each task (or one really well, half of another and none of the other one). I've had lots of support from all sorts of people and I've kept trudging onward, doing pretty well academically but not really looking after myself. This takes it's toll, when I don't look after myself I get more exhausted and more anxious so I can't think clearly and have difficulty attending lectures. I put all my energy into doing the academic work and I end up not being able to do the academic work. It's been a hard decision to make because I love uni and love what I get to do when I'm there and I know that prioritising my health will mean all of that is going to change.

Exactly what the outcome of this decision will be I'm not sure, I need to speak to my university support team to see what they can do to help me. At the moment it looks like the best case scenario is that I sit my exams later in the summer, stay mostly at my parents home and finish my first year just a little later than everyone else. I have no idea how possible this will be, whether it's logistically possible or whether I will have the energy to put in the work that I need to.
There are a whole host of other options too and the disability team may have ideas I've not even thought about.

So I don't really know what will happen. Right now I'm finding things to soothe my soul, to relax my body and unwrap my mind from the panic that has been buzzing about for some time. Having made the decision that I'm going to proritise my health and my enjoyment of life has freed me a little. I feel freer to breathe and freer to do what I both want and am able to do. I still feel raw and a little churned up inside but it feels better than before. And it feels an awful lot better than the prospect of carrying on as I was, of keeping bullheadedly ploughing on doing what I am "supposed" to be doing. It feels so much better than the prospect of crashing so hard I end up in hospital again or in a state where I'm not able to do any of the things I love.

It's not easy, it goes against my instincts, but it is much better this way.

A year with tiny steps.

(Just a note, I've been writing this since about the 4th of July so it's quite some out of sync now)
A year is a funny thing - it feels long but passes super quickly at the same time. There's a lot that changes in a year.

This time last year I had been in hospital for five days already into what would be a three week stay. I had no use of my right hand (which was stuck in a fist) and my body was pulling itself into peculiar positions that were so contortionistic that they were dubbed "gymspastics" within our house. My whole body (or near enough) cramped/spasmed for up to two hours at a time between two and five times a day. This was not fun.

 To be honest I was on such a huge amount of medication that I cannot remember most of this, just a haze with a few extremely vivid snapshots. All sorts of things were investigated as I spasmed away in my bed - mostly the doctors just scratched their heads and increased muscle relaxants while nurses an my family watched on concerned. A few members of staff stand out from this time some for the loveliest of reasons - some not so much - but I'm sure I've aired my gripes about them plenty.

There was a nurse on the AMU (named Leanne I think), my first ward - one of the ones who had treated me on a previous admission who gave the doctors what for when they did not give me chance to speak or did not even try to understand CRPS. She listened when I explained and sat with me through spasms and tears. I'm sure other nurses on that ward did likewise but she stands out.

There was a student nurse, on the second ward, (Seb- whose sister I know) who sat with me an hour and a half past the end of her shift when I was having difficulty breathing which sparked a panic attack. She cooled my head with wet towelly things and helped calm my mind with soft hands and calm patience.
And then there's my pain doctor - The lovely man who educated the ward staff about CRPS and chronic pain, who kept dropping in on me and thinking up ideas despite my technically not being in his care and his working hours being full to the brim already.

This year during the same span as I was in hospital last year I sat exams, baked, read and pottered about in the garden rather than lay in bed in huge pain. I was at a high physically rather than an extreme low. I had next to no panic attacks rather than at least one a day. And I was happy.

A year can bring huge changes, a comparison between now and then shows that the little tiny steps towards health made every day are really really worth it despite the difficulty in doing them.

Spasmic fantastic.

For the past month my right had has been a fist, whilst this was not fun I can live with that, thumbs can be used as hooks and pointers - if you're lucky you can slot in things like cutlery and pens. Far far more disruptive has been the full body spasms that have pulled me into positions far more usual for contortionists or gymnasts than tired and pained teens. It's been rather playfully termed in our house doing my "gymspastics".

Twisted limbs, joints about to dislocate, back arches, stomach pulls me forward, legs assume the "smear test" position, an unsupportive and strangled neck, eyes that wont open, lips that wont move, jaws that lock and teeth that bite into lips cheeks and tongue. Communication is strange garbled strangled words,  subdo-signing, blinking and strained eye movements.
Well, what is it that's happening?? What can be done to help? Answer who knows. It appears to be some sort of dystonia, this may be to do witth my CRPS it may be something new. So after 3 weeks of increasing baclofen and diazepam i found myselfvon Saturday morning in a hospital bed on AMU having arrived at A&E at 10.30 Friday night 1.5 hours with no spasm and having around three hours of light sleep

I wrote that early hours of Saturday morning It's now Monday night running up to 11pm. I've been turfed to another ward as space was needed, I feel distinctly less safe here - staffing levels are lower and the nurse on tonight is pretty shirty. i can feel anxiety creeping ever higher. Visiting times are shorter too. On my bay is 5 elderly ladies and me - none look close to death but none particularly healthy.

 In other fantastic news both my pain Dr who is the hospital's main crps man and the neurologist are on annual leav which in short means no one has any idea what to do with me. The medication levels I'm on to reduce severity of spasms is not safe at home but I definitely would not be safe at home if they reduced it as the spasms are still intense. As the ward staff noticed last night when they tried not giving me any diazepam* it was a spectacular spasm but with a caring nurse and the one emergency dose I had prescribed we organised me onto a comfortable enough position so I could sleep - but still in spasm.

 I wrote out a note for the staff yesterday nice and patronising like the ones they write about the patients. It's attatched to the blog somewhere Today is spasmed still. Mum was here to help. No idea what they're planning on doing with me. Pain is high high high.

 *my drs are anxious about the amount of meds I'm taking and the diazepam is at the "we're a little concerned about this" doseage. On Saturday morning they put a 2 day review on it which to any sane person means review Monday morning but apparently in Dr speak means review sunday night at 10pm where there's not a Dr to be seen. I'm now on a 1 day review which probably means they won't be giving me a dose in the morning like theyre supposed to until a doctor turns up.

Thoughts in pain.

Some days pain consumes me - it is my entire being. Even when I take my emergency pain medication (fairly heavy duty opiates) it's still my main thought, there is little to nothing else. Even when  my attention switches to something other than pain it doesn't happen spontaneously I have to really deliberately focus on something, even the smallest thing takes a lot of energy to focus on enough to actually do it; whether that is watching the TV, changing clothes, eating (which is difficult enough anyway) or finding a somewhat comfortable position. When I'm in that state sleep is still not an escape from pain, assuming I manage to fall asleep at all, I feel the pain in my sleep. Pain permeates throughout all of me. The pain in my sleep feels much worse than when I am awake, a testament perhaps to my brain's ability push aside & hide the full extent of my pain, it is scary - more than scary. When it happens I usually wake up crying out and too afraid to go back to sleep in case it happens again. Sleep used to be a refuge, the only time when pain was not a problem, but now it's something to be feared and to worry over every night.

Pain changes your thought patterns, it reduces your ability to think logically, it can stop you thinking of anything but pain at all. Right now for me it feels like swimming in a pool full of treacle; it's slow, it's hard work, it uses a lot of energy and there's no way I'm going to get to the edge right. It's taking me a long time to work out what I want to say, a long time to work out how to phrase it and an even longer time to actually sort out the mechanics of speech (and typing) then once I actually start talking I might find myself saying "umbrella" instead of "cup" because someone just walked past carrying an umbrella. Sometimes I just can't think at all. When I can't think I start to panic, some might think it's a strange reaction  but really imagine you're trying to reach for something but neither of your arms will move in fact imagine that they're not there at all and this is all a surprise. Suddenly your arms are gone and you can't do anything; wouldn't you panic? Well, there in my head there are no thoughts no movement of the arms of my brain I can't reach the information I need at all. And this starts the panic, I can't communicate anything, can't communicate what's wrong or how people can help. I'm locked inside my own head with everything I know just out of reach behind an impenetrable mud wall. So yes I panic, sometimes just rapid breathing other times it's huge panic attacks that leave me curled up in a ball until it recedes and then flat on my back for the next 3 or 4 days.

In these minutes, hours and days I lose myself. I can't find who I am, I don't know what I like, I don't know what I want to do, what I want to eat, if I need the loo, I lose everything. I think this is the most terrifying thing. All because of the effect pain has on my brain; on my mind. Pain is nasty, pain is all consuming, pain is punishing it pushes you to the limit and yet you continue on. You fight; you find yourself again; you try to live. Then you do it all again.

Hello Welfare Reform Bill induced anxiety

So this blog has been created as a distraction, trying to escape the panic that is being brought up by watching the House of Commons(HoC) Parliamentary debate on the Welfare Reform Bill (WRB).

Why am I so terrified? Well that's because they government are intent on systematically destroying the disability benefits that I may one day soon be forced to rely on. So far I am supported by my parents, child benefit (until the age of 19 same as someone in full time education) and a small amount of DLA at the wrong level (low rate care (LRC) & low rate mobility (LRM) which should be at middle and high rates respectively - but that's another story) - but one day soon, perhaps when I am 19, perhaps if I am no longer able to go to college I will have no choice to apply for ESA.
I have no NI (national insurance) and perhaps could be one of those young people who if the government loses their vote and the HoC keeps the Lords (HoL) amendment would have presumed NI contributions. I do hope to be able to work one day but the foreseeable future I have no chance, I barely manage 7 hours a week at college!
If (yes that's if) I got ESA I might be put in the support group - on my own assessment and that of my father (a benefits advise worker) I should go into the support group, however I know the system and I know ATOS medicals - the personnel who run the WCA (work capability assessments) are on the whole unscrupuless, they just don't care. And the WCA themselves are not fit for purpose a tick box system is not appropriate for complex conditions which so often effect people.

The change form DLA to PIP will be horrific for me too. Not only the anxiety in changing over but the difference in descriptors, the horrible assessments, I have had 3 face to face DLA assessments for as many claims (yes they DO happen) with ATOS doctors already I know what I am talking about. Each doctor has hurt me and lied on their forms about anything from how long they spent with me, to the level of ability I had and the level ability I showed them, or what aids and appliances I have and how much pain I am in. They judged my condition incorrectly, one even decided that it was entirely psychological which was definitely not her job (they are payed to comment on my level of impairment not diagnosis), they caused severe anxiety  and NONE understood the bundle of complexity and contradictions that is Complex Regional Pain Syndrome. If these face to face assessments must take place then why not with our own GPs, Consultants, Physiotherapists or Occupational Therapists who will be much more familiar with us, our conditions and much better qualified t assess us than a random doctor who sees you for between 20 minutes and 2 1/2 (in my experience).

I am still anxiety filled and waiting for the speaker to collate and declare the results of amendment 15  which continues presumed NI for severely disabled young people allowing them to get contributory rate ESA.

For now, Becca