Guilty until proven disabled

Guilty until proven disabled

Perpetual fear

Neverending stress

Constant foreboding

And continual dread.

Fight and battle

Battle and fight

Repeat, repeat, repeat…






Disrespected. Intimidated.

Manipulated. Humiliated.

Scrutinised. Patronised.

Head crashing

From the brick wall

You’re bashing against.

Prepare to feel guilty.

Prepare to feel paranoid.

Judged a fraud?

You’re a liar, undeserving.

Judged disabled?

You’re worthless, a burden.

And the trial doesn’t cease

If you pass the tests.

The walls have eyes

And the public are spies.

Perpetual fear

Never-ending stress.

Fight and battle.

Battle and fight.




Today I spoke at a seminar for International Day of Persons with a Disability.  The event was centred around the benefits system and the experiences of disabled people.  When I was asked to be involved, I started pulling together my thoughts about the benefits system and resulting blog post began to turn into the poem above.

A few snippets from the notes I made when listening to other people at the seminar:

The process and system exacerbates conditions.  It is ineffective.  Inappropriate.  And a waste of time and money.  It does not get disabled people into work and may even move them further away from the world of work.  It is unethical and inefficient.

Failures in the system are plunging people into debt, leaving them unable to buy food, making people reliant on friends and family and charities just so they can survive.

“It just smashes your self-worth.  You’ve got to lend money, you’ve got to beg to borrow… you don’t know when you’re going to get money to pay it back”
– Disabled woman, quoted in an ESRC report

Disabled people are under siege from the very system that should be supporting us.

The DWP are stealing dreams and hopes and futures.

Eating Disorder Awareness Week

TW: Eating disorders(!)

As well as being Hypermobility Awareness Week, it’s also Eating Disorder Awareness Week.  I hope you’ll all be feeling very aware by Friday!!

This year’s Eating Disorder Awareness Week is focused on eating disorders in the workplace and having had an unusually positive experience, I wanted to write about it.

Respondents to B-eat’s Eating Disorders at Work Survey 2015 reported:

  • More than 30% of people felt they were stigmatised or discriminated against because of their eating disorder at work
  • Nearly 2 in 5 people said their employers’ impact on their recovery was ‘unhelpful’
  • Two thirds of people were unable to access a formal or informal mechanism of support for their eating disorder at work
  • 38% told us they were forced to or felt they had to use their annual leave to attend medical appointments for their eating disorder
  • More than four out of five said they didn’t think or didn’t know whether their employers and colleagues were ‘informed’ about eating disorders.

My manager

I am very lucky to have an amazing, supportive manager who didn’t make me feel stigmatised, who did all he could to help me access treatment and who didn’t insist I use annual leave for appointments(1).

I am lucky in that I have been employed at the local authority in various jobs since 2010 with the same manager so he has seen me at my best and my worst. My anorexia has been on and off but the worst period was in the last three years. My friend and colleague helped me tell him shortly after I became ‘public’ about my depression and eating disorder. My manager was very supportive, he acknowledged that he wasn’t sure what the best thing to say or do was but that I should keep him informed and he’d do anything he could. Other than my manager and friend no one else at work has been aware of my illnesses.

After opening up to my manager, I had a long period where I was unable to access NHS help and my manager approached HR and Occupational Health to see what support could be provided through work. To start with I was told I was too complicated and to go to my GP. Again, my manager got involved and negotiated a 6 week plan of weekly sessions with a counsellor. Unfortunately this turned out to be mindfulness only, which at that stage in my illness wasn’t appropriate. Having run out of options, I was getting desperate and my manager actually wrote to my GP expressing his concerns. Shortly after that, I finally managed to get a GP to take me seriously (GPs and eating disorders is a topic for another day…).

When I finally started to get to the appropriate NHS support, my manager was clear that I could take all the time I needed for appointments including time after to ‘decompress’ before returning to work. He let me work at home when I needed to. We have an online messager system and he encouraged me to use it to let him know if I was having a bad day or needed anything (we are in an open plan office so telling him wasn’t easy and I find it harder to speak when I’m having trouble). He would always ask how I was doing and what support he could offer me and when I told him I found office diet talk overwhelming, he made an effort to redirect the conversations.

Knowing he was aware of the anorexia meant that he was able to give me more flexibility and more leeway than normal whilst still ensuring I was performing well enough (I was worried he’d not pick up anything that was wrong with my work for fear of upsetting me but he reassured me otherwise). He encouraged me to apply to access to work for support and when I hit walls with that process he helped as much as he could.

He has been incredibly supportive, encouraging and approachable throughout my illness. I am now applying for retirement through ill health (for physical health reasons) and he continues to offer support above and beyond what I would expect.

The rest of the organisation…

Generally, I’ve found that whilst my manager is amazing, the rest of the organisation have been less so. There seemed to be little in place to support staff with severe mental health issues, although there is support for mild depression, anxiety and stress. It was really important to me that I continued to work and I believe if I had had a different manager within the same organisation, I wouldn’t have been able to. I have spoken to other people with mild to moderate mental health issues in the organisation who’s managers have been far from supportive.

Other workplace issues have included the constant diet talk that comes with office working. On a number of occasions I’ve rushed from my desk to sit on the toilet floor crying. I find it so triggering to hear and especially things like the 5:2 diet where people were comparing starvation meals and I was there trying desperately to keep myself on track with recovery. There are also very few places where you can eat alone and I can’t leave the office because of a physical disability so generally end up eating at my desk. I’m ok with this most of the time but it can feel like what I eat is on show. I’ve missed Christmas meals, leaving meals and sat through incredibly anxious nights out with my anorexia as so often our work social activities include food and drinking, generally alcohol, all of which can be difficult for me.

  1. In terms of appointments, to start with I had fortnightly appointments which my CPN which required me to travel – by the time I’d got the bus there and back, I’d lost about 3 hours of my work day.  More recently I’ve been having weekly appointments with a psychologist which takes a morning out of my work day.  I don’t work full time but the only availability was on one of my work days.  It would have been well within his rights to insist I wait until I could go on my day off but he prioritised my recovery.


Being disabled is a full time job

So, as I’m sure you’ve heard, the government are putting pressure on disabled people to work. Perhaps if all the bureaucracy around being disabled were easier to manage it might be more realistic.  Let’s look at a week in my life balancing being disabled with working:

Monday: day off. Wake up at 8.30. Carers are with my 8.30-9.30.  Carer comes back to my physio appointment at 12 which means leaving at 11.30 or earlier in order to get a blue badge parking space at the hospital. Physio appointment includes prejudice and inappropriate treatment.  It wipes me out and we get home by 1.30.  I’m supposed to meet with CQC inspectors at some unknown time today about my care agency.  They never turn up. Carers are back 5-6 and then I’m asleep by 7.30. At some point I needed to ring the taxi company that take me to and from work because taxis keep failing to turn up. Add onto that my dislike around phones and that simple task becomes huge. I also needed to speak to my social worker about social housing.

Tuesday: work (I do work 3 days a week). Wake up at 7.15. Carers 7.15-8.15.  Taxi due at 8.15. Most of the time it’s getting on for 8.30 before it arrives. I have to wait outside because I use my wheelchair and I can’t get it into my house. This leaves me cold and in increased pain before I’ve even got to work. Finally get to work, which isn’t as accessible as it should be. Battle people’s prejudice in the work place. The struggles around actually being in work (despite numerous access to work assessments) is a blog post of its own. Go home. Or I would if the taxi turned up… Carers are waiting for me when I get home and leave at 6.30.  Bed by 7 on a work day.  Exhausted. In pain.  On work days I basically do nothing except attend work.  I have no energy or spoons or time for anything more.

Wednesday: day off. Carers 8.30-9.30.  11-12, seeing my cpn. She has to come to my house because the place she works is inaccessible. I find appointments quite tiring.  After lunch and resting a while I then chase up my wheelchair appeal. I also have to sort out seeing a house with my social worker which involves ringing the taxi company again. Carers are back 5-6, I’m asleep by 7.30.  Days i’m not in work I will try and get something creative done, depending on pain and energy levels.

Thursday: work. See above.

Friday: work. This is the hardest work day because I’m still exhausted from Thursday.  Before I start work I have to see my psychologist so i don’t get to work till 11am.  Thankfully my work are incredibly good to me because this is 2.5 hours a week when I should be in the office.

Saturday and Sunday: similar to my days off but Saturday is hair wash day and Sunday is body wash day.  Both are exhausting and painful and take a lot of time.  I can’t get into my bath/shower so we have to sponge wash me.  It’s cold and undignified.  If I want to go out, I have to do so when my carers are here because I struggle with my locks.  On a good day I can manage them once in the day so they either need to be there to lock up or unlock.  On a bad day I can’t manage the locks at all.  I also can’t get my wheelchair in my house so going out means I have to get a carer to put it outside or I have to struggle to get it out of my shed.

In addition to the above, I need to do regular physio, all the normal life admin, manage meds, sort out mistakes in care rotas, go to regular gp appointments, sort out benefits etc etc. All whilst exhausted, in severe levels of pain and battling mental illness.

Because my pain is getting worse, I’m struggling more and more to actually make it to work on those three days.  In addition, getting cold whilst waiting for unreliable taxis and having to chase taxis and argue with the taxi company (yes I did book a taxi…) makes me start to wonder if it’s really worth the amount of mental and physical effort work takes out of me.  Just getting to work in the morning can be a feat of its own.

Job hunting with a disability

sorry, this has become a bit of a ramble…

I’m just seen a tweet from @iamkateevans which links to a blog post about someone with cerebral palsy and their job hunt.

This, and the restructure we’re undergoing at work, got me thinking about what I would do if I lost my job.  I would like to think that it would be accepted that I’m not really fit for work (I can barely do my job and I’ve got a million adaptations, exceptionally supportive colleagues, a lot of flexibility and I know what I’m doing in my sleep).

But I know that the benefits game isn’t embracing of common sense.  So there is a reasonable risk I will end up on JSA or the work related part of ESA which assumes you’ll be able to work again and means you have to show you’re moving towards that.

Up until now, I think I’d mostly been focused on the work part of finding a new job.  The adaptations etc which would be needed when I found a job.  I hadn’t really thought about the job hunt itself.

And it’s throwing up a lot of barriers:

  • typing is very painful, i can only do a little bit at a time and voice recognition software on my laptop is patchy at best.  Add in the time limited application forms and those which are badly formatted and filling out an application is going to be a nightmare.
  • there are more and more days where I can’t get onto my laptop and can only do limited things on my tablet so actually having to search websites for a job is going to be difficult.
  • getting to the job centre in the winter when leaves, ice and snow make pavements slippy is a risk.  and travelling over cobbles and crap pavements in a wheelchair exacerbates my pain.  As does the cold.  The alternative would be spending a fortune on taxis.  plus there are days when leaving the house isn’t an option.  depending on where i live in relation to the job centre, there may need to be suitable public transport to get there at the times required (and has space for a wheelchair, buses can get crammed with people going to work and have to leave you behind)
  • energy levels also restrict what i can do a day in terms of job hunting
  • brain fog meaning deadlines are missed or questions misunderstood or other silly errors
  • i am limited to a very small area as I can’t cope with much of a commute
  • I can’t sign my name. I can no longer hold a pen and this causes a surprising amount of difficulty for people who won’t accept my typed name instead…

And all of that is before you even get invited to interview (which would need to be in an accessible room, planned around medical appointments, other peoples attitudes etc etc) and then all the issues which come up in the work place… which is probably a story for another day…