Seven Questions to Ask About the Cuts to Access to Work

Seven Questions to Ask About the Cuts to Access to Work

http://www.dreamstime.com/stock-image-disabled-man-his-co-worker-talking-boss-men-vertical-image43205541

As I’m sure most of you have heard, a couple of weeks ago Lord Freud suggested that some people with disabilities may not be worth the minimum wage, and some could be paid £2 an hour instead for employment.  His off-hand statement has of course garnered a backlash including calls for his resignation and a petition asking for him to be fired. Lord Freud has since apologised, releasing a statement stating that he has been “proud to have played a full part in a government that is fully committed to helping disabled people overcome the many barriers they face in finding employment.”

However, this statement couldn’t be further from the truth. The government have in fact done the opposite and driven many people with disabilities out of work, by cutting vital support in the form of the Disability Living Allowance to Personal Independence Payment transfer; removing Independent Living Fund, cutting funds to councils for Direct Payments and reducing what support Access to Work will fund.  These cuts tell a different story, and leave many people with disabilities having to reduce their hours, change the type of work they can do or leave employment entirely.

Working with a disability can often be very difficult, both in terms of securing employment, the on-going difficulties some face with juggling their health and work, as well as employers and colleagues attitudes.

What is Access to Work?

Access to Work is a scheme set up a number of years ago with the aim of helping people with disabilities attain and remain in work.  It’s worth around £80m a year, and can be used to pay for a range of equipment, adaptations and assistance. However changes have been quietly happening to the scheme, putting much more of the onus on the employer to fund this support.

Instead of suggesting people with disabilities should work for less than half that of a non-disabled person, the government should instead be increasing funding for Access to Work, and promoting it to employers.  Many still do not know it exists, or what kind of help it can provide.

Employers often think that the implication of employing a person with a disability will be that they will cost more, and sadly due to the subtle cuts to Access to Work this is becoming true in some cases.

How did the scheme previously work?

At the time I had my first Access to Work assessment the rules were that if you applied for an assessment within your first six weeks of work, they’d usually cover the cost of any disability-related equipment/support required, and after six weeks it would be down to the size of the company.  For a smaller employer they’d still pay, for a medium sized company they’d contribute, and for a larger firm they’d expect them to pay.  This was a pretty fair system – and it reduced the risk that a disabled person would not be offered a role because of the extra cost for their support.  In that first job I was given a range of items to help me – from a specialist chair, to smaller items that made life easier, such as an electric hole punch/stapler.

How has that changed?

They have now decreed that the company has to pay for pretty much everything.

So by the time I changed jobs and was taken on by a small charity, the rules meant almost everything I’d had funded previously was now not covered by the scheme.  My new assessment asked for a specialist chair that included heat to try and ease muscle spasms, a desk that could be raised, an £80 headset so I could answer the phone, a recording device or electronic notepad for taking notes in meetings and numerous other items that directly related to my disability and the role I was doing.

The bill was thousands.  My Access to Work Advisor managed to get the chair funded, as the heat function pushed it past a standard item, but what was left was still a lot of money.

I’d just convinced that company to take a chance on me, and had already had to bring up all the reasonable adjustments I needed from them, and now I was supposed to hand them a huge bill?  So instead I looked over the list and decided what I really, really needed, and what I could live without even if it made life more difficult, or more painful.  Only then did I hand my list over, with my fingers crossed they didn’t find a way to get rid of me.  I really didn’t want to be seen as more hassle than the non-disabled person they’d picked me over.

What impact has this had?

Statistics show that disabled people are much more likely to be unemployed than non-disabled people. So my fears that employers see disabled people as more costly are true. It’s very short-sighted of the government, as funding the one-off bill for equipment a disabled person may need to work, could keep that person in a job rather than having to pay for much longer term benefits.

What won’t they fund?

The list of items Access to Work will no longer fund include chairs, electronic adjustable desks, perching stools, back wedges, analogue hearing aids, laptops, temporary wheelchair ramps, voice recorders, anything to do with phones (i.e. headsets, mobiles, etc), writing slopes, staplers, hole punches, and much more.

The fact is that many of those items cost significantly more for a disabled person than a standard work, or  the item wouldn’t be required at all without a disability.  For example the ergonomic keyboard I was provided cost approximately £60.  A standard keyboard is around £20, and probably cheaper if buying in bulk for a whole office. A standard hole punch is around £2.99 and a stapler similar. The electronic one I was provided was £40. These prices soon add up, including a specialist chair without the heated function (£600+), electronic height adjustable desk (£500+) and a laptop for home working (£700+).

What about people that have longer term support in place?

The changes have impacted them also. Those that do have long-term support paid for by Access to Work, such as personal assistants, daily transportation or interpreters are now finding they are having their support constantly reviewed, sometimes even on a month-to-month basis which means they are under a huge amount of stress that the support they rely on could be pulled, or reduced at any moment. Other people are being told that high levels of support are only available to people in certain professions and that their work won’t be covered under the scheme.

The government are shooting themselves in the foot here because by funding the support that somebody needs – for example a personal assistant, means that two people are being employed. Otherwise they’ve got two people on benefits, while they’re pumping millions into coming up with new schemes run by private companies to put pressure onto these people to find employment.

They’re also regularly making changes without a consultation with the user base, or any kind of impact assessment.

How can this be fixed?

People with disabilities don’t want to be told they’re worth less than a non-disabled person, as it’s an incredibly untrue statement.  What they do need to know is if they happen to require support to work (and not all disabled people do of course), is that it will be funded by the scheme that was set up for this exact purpose, and that it won’t be stopped or reduced for superfluous reasons.

Increase and strengthen the funding, and see a happier, less stressed workforce, and not so many having to fall back onto the benefit system.

What have been your experiences with Access to Work?  Has your support changed?  Please comment below with any thoughts/comments on the article.

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Good news and bad news

Good news and bad news

My job offer is now formal – I’m so pleased.

I have a lot on at the moment.  Our local council has decided to remove access to all the central, level blue badge spaces in the town centre and add more to the existing car parks on the outside of town.  They are much too far for disabled people to walk to.  For over a year as chairperson of the local access group we’ve been fighting the decision and trying to get them to come to a compromise, but they haven’t been interested.  Yesterday they published the official order to make the changes, so I’m madly working on a response to the formal consultation.

My wrists have chosen now to flare up as well, which is making life quite difficult.

Credit to: Michel Meynsbrughen www.prestonotes.c.la

Credit to: Michel Meynsbrughen
www.prestonotes.c.la

“Any organisation is like a septic tank. The really big chunks rise to the top.”

“Any organisation is like a septic tank. The really big chunks rise to the top.”

The story of how I found inspiration in social policy and services for people with disabilities is detailed in the post, “To succeed… you need to find something to hold on to, something to motivate you, something to inspire you.” 

I was just being transferred to a new agency, where my manager asked them to meet with me on day one to discuss reasonable adjustments.  I spent that first meeting detailing my conditions and how they impacted me, and the reasonable adjustments I’d had in place to help.  They weren’t put in place.  There isn’t a lot I can say from here, but within a month I was so stressed and ill, that one day when I was driving to work I thought I’d rather get into a car crash than go in for the day.  Instead I headed to my GP, and she was shocked at the changes I’d undergone in a short term – and insisted on signing me off for a month.

Everyone wants to have a good relationship with their employee, and when you have a disability you have to fully trust they will do the right thing by you to enable you to carry out your job.

That sick leave lasted six months.  I couldn’t get through a day without spending most of it sleeping.  My pain levels were sky high.  I stressed and worried about everything – it impacted every part of my life.

Towards the latter half of the six months I was off, I began to get back on my feet and began applying for jobs.  None were really what I wanted to do.  They all turned me down, all cited I was close, but not quite enough.  I don’t know how much the fact I walk with a stick has to do with it, because you can never tell – but I honestly don’t think it helped.

I spent the month of January in a rehabilitation programme, detailed from here.  Afterwards I saw a job being advertised and thought wow, if I had been asked to write a job description for my perfect job, it would look very similar to that.

The job was setting up and running a new community centre, particularly aimed at disabled and older people.  It was all about bringing the community together, providing services they need and managing the staff already at the agency.  I applied, and was offered an interview the next day.  It would be a two stage process – touring the centre on the Wednesday morning, and meeting all the groups involved, and then a presentation and the interview on the Friday morning.

I was due back to work for the first time in six months on the Wednesday but not until the afternoon.  The first interview at the centre began at 10.30am and I found there were just two other candidates and they were both there.  I was scared of overrunning and being late for my first day, and I could see there was a lot going on and it was going to take awhile.  I’d already told the manager running it I had to be at work in the afternoon, but at 11.20am I had to say look, I need to leave in ten minutes.  I hated it, it made me feel like I was pushing to go and not interested.

We sat down as a group and they explained the history of the centre, that many groups were all involved and it had got very complicated.  They wanted one person to come and sort it out and bring it away for the current older person usage, into something everyone could use and get something out of.  The building was lovely, bright, airy and had so much potential.

There was some opportunity for questions, but one of the candidates kept jumping in.  I wasn’t able to ask much, as she was much louder than me.

I left desperate for the job, it was perfect.  But I worried I’d not come across right.  I probably seemed quiet, and more interested in leaving, than someone passionate about the project.

I had my first afternoon back at work after the interview, and was shocked to find nothing had changed.  It had taken six months to reach some kind of agreement to put adjustments in place – months filled with despair and disbelief, but it had all been for nothing.  It strengthened my resolve.

I’d begun researching the second I found out about the job, and had spent every spare second I had finding out everything I could about the local area and other community centres, I’dr read the business plans of other similar community hubs and how it could work.  I’d researched the Wellbeing Strategy by the County Council and looked at all kinds of partnerships that could be created in the area.  I made a mind-map of all my findings (as that’s how I work) and it was the biggest mind-map I’ve ever made!

My presentation was ten minutes on how I’d prioritise my business plan for the centre.  It seemed a lot at first, until I finished my research, and then it seemed an insanely small length of time.

I finished my presentation on the Tuesday night, and added some bits and pieces in Wednesday after the tour.  It came to Thursday afternoon and was about to send it over when I realised it just wasn’t right.  It wasn’t what I wanted to say.

I had an appointment that afternoon, and when I returned I manically re-wrote the entire thing.  It felt much, much better.

I spent time researching ridiculously hard interview questions, and trying to prepare answers.  I also prepared to tell them about my sick leave in the interview.  It felt like I’d be removing every chance of me getting it, but felt I needed to be upfront.

My interview was at 9.30am, and it began with the presentation.  I was nervous, and rushed, but it seemed to go well.  They commented that I was a completely different person from the Wednesday, and asked if I’d been nervous.  (Of course!)

The letter had said my interview would last an hour, but it seemed to flash by.  None of those difficult interview questions came up, it seemed really basic and I was finished some time before I thought it would.  At no point did an opportunity to discuss my sick leave come up, and I felt dishonest.  I had prepared my list of references, but I’d only given the details of my manager before I’d been transferred, not after.

I’d only just met my fifth line manager since July on the Wednesday, which I explained to them, so felt my other references would be able to explain how I worked better.  Just as I was leaving one of the interviewers said she knew the manager of the agency, and would be talking to him about me if I was offered the job.  My heart dropped – he would tell her I hadn’t been there for six months, and there would go my job.

I came home and immediately tried to phone her so I could explain the situation, but I couldn’t get hold of her.

I left to go to work and spend the afternoon with butterflies beating my stomach up, never mind fluttering.  I wanted the job so desperately, but I’d been incredibly nervous.  The other candidates had seemed to come across better, and seemed more self-assured.

I suddenly realised she didn’t have my mobile number and being at work until 5pm, I’d probably miss the call telling me either way.  At 4pm I emailed her, thanking her for the interview and gave her my mobile number in case of any questions.

I spent the next forty minutes jumping at every noise until my phone finally rang.  I grabbed it and rushed out the office.

I knew from when I picked up it was bad news.  Her voice was quiet, as she thanked me for having come in that morning, and for presenting to them.  She sighed, and I tried to stop the tears – I had to go back into the office after all.  She continued and said, “So I’m just calling to let you know… we would love to offer you the job.”

My heart soared, and she continued, apologising for being so cruel, she’d just enjoyed torturing me.  She said my presentation had completely blown them away, and I had been so incredibly passionate and enthusiastic, that hadn’t needed to ask me many more questions.  They had anticipated much of the interview as asking me questions about my ideas, but as I’ve covered everything already, they felt like they didn’t have to.  She said if I brought even an ounce of the passion I’d shown that morning into the job she’d be thrilled.

I then told her I had to be honest, and explained about my sick leave and the reasons surrounding it.  It was such a relief to tell her.  She said she wanted to make sure the company offered me any support I needed straight away.  She needed to contact my references and get a CRB check done, and then I’d be ready to go.  She told me to go and celebrate with a drink or two.

I went back into the office shaking, trying to pull myself together.  I had spent the afternoon mind-numbingly inputting data onto a computer.  I was free, and had an awesome job to go to.

Credit to: Cieleke

Credit to: Cieleke

I just hope this is the start of fulfilment once again at work, with a purpose towards doing something I love.

 

“To succeed… you need to find something to hold on to, something to motivate you, something to inspire you.”

“To succeed… you need to find something to hold on to, something to motivate you, something to inspire you.”

I was never sure what I wanted to do when I was growing up.  Many of my friends had obvious interests or skills which led to a clear career path.  But I wasn’t particularly good at anything at school.  I was okay at English, okay at IT.  I was appalling at art, and told basically to just stop, which is funny because I can be creative, but not in the very narrow way they wanted me to be.

I picked my A Levels based on enjoying English and IT, and quite liking the teachers I spoke to who taught Psychology and Politics at the college.  I then found I really enjoyed Politics, and found a kind of passion in it, which then encouraged me to do a degree in the subject.  Many people see it as a staid, dull subject, full of middle class white men arguing and waving their fists at each other.

In reality, that’s a tiny part of what politics is.  Politics is everything.  It’s the area you live in, the roads you drive on, the places you visit, your income and the way we as society treat each other.

One thing I picked up on quite early was how housing can have such a profound effect on your life.  Housing has a direct impact on your education (how can you study without a quiet, safe environment?), your health – (can you be truly healthy in a cold, damp property, or with stressful neighbours or landlord, or with expensive repairs hanging over you) and even your life chances.  Have you ever pulled a face, or immediately judged someone based on the area they live?  Employers certainly have.  It can decide just how safe you feel depending on crime in the area.  It can decide the catchment area of your school – good or poor, which can then have a direct link to whether you go on to university.

flatsHigh Rise flats vs posh househouse

While I was at university, I chose to take a lot of modules based around social policy and housing policy as I found it so interesting.  Then, during a summer break, an opportunity came up at a local charity that worked in the housing sector.  Their aim was to assist older and disabled people to stay in their homes via adaptations, grants and advice.  The job on offer was to set up a gardening service was a subsidy for people on low incomes.

I loved it.  I started the service from scratch, and decided how it would all work.  It took awhile to get going, but it became a thriving service.  Many people see a gardening scheme as cutting grass and pulling up weeds.  But it was so much more than that.  For many of my customers the gardener was the only person they saw all week.  For many others, they’d lost their partner who used to look after the garden, and seeing it become a jungle was soul destroying.  Others were housebound and the garden was their only view to the world.  It made me realise how a service, even one perceived as small, could make such a positive impact on people’s lives.

My job role expanded to take on new services, and I was given the opportunity to write the business plan for the agency, along with the marketing and fundraising strategy.  We began to prepare to expand all of our services, and bring new ones on board.  I began to coordinate staff, and recruited new ones.  My job role was sent to head office in order to change my job title and wage to reflect all my new responsibilities.

We then received the devastating news that the company had decided to close down their charitable wing.  We were informed they were trying to find alternative organisations who may be interested in taking the agencies on.  It then got a little complicated –  one construction agency agreed to take on agencies across the country as long as they had a reasonable contract left.  We didn’t.  They requested our contract with a council to be extended, but they refused, which meant we were given redundancy notices.  There were months of turmoil, one minute being told we were okay, the next that we’d be let go.

It was a difficult time, because I was really worried about finding employment with my disability.  I had some job interviews, but didn’t get anywhere.  However, eventually the contracts were reoffered and three organisations applied.  Two I’d heard of and was hoping one of them would win as I liked their ethos.  I hadn’t heard of the third.   The council kept dragging their heels, however, and we were told by our existing company we’d be kept on for one more month but then they would have no choice but to let us go.  At this point they’d given notice 18 months previously they wanted to leave, and given a date to leave.  It was six months past that date, and they’d continued to keep us on – while trying to compromise with the council over and over.  The council knew they had a month deadline, but waited until the end of the final week to finally announce the third company I hadn’t heard of had won the contract.

It was hard to even feel relieved at this point.  I felt battered and bruised.  Over and over we’d been told we were out the door, and then safe, and then back to being goners.  My stress levels were very high by that point, and my worries turned to the new company.  My current manager had been very supportive over my condition, having suffered from chronic pain in the past herself.  We’d worked together to put in place reasonable adjustments around working from home, equipment, flexible working and more.  I never had to work consecutive days, something I found impossible.  My manager understood my worries about going into the new organisation, and so requested an urgent meeting to start the ball rolling and put my mind at rest.

The words ‘it was all downhill from there’ seem very apt at this point.  The story continues in the post “Any organisation is like a septic tank. The really big chunks rise to the top.”

Keep on, Keepin’ on

Keep on, Keepin’ on

I have a job interview next week, which involves a presentation (eek!).  My work situation at the moment is dire, and this job seems perfect for me.  I could have written the description myself.  It involves planning a new service for older and disabled people – something I’ve been focusing on for some time in my current job and at Fair Access.  I’ve spent weeks planning out and writing my presentation over and over.  I have to map out how I’d carry out the project, my plan for sustainability and all my ideas.

http://www.dreamstime.com/stock-photo-businesswoman-presentation-image13796100

But I’m due back to work next week, and both parts of the interview are on days I have to work (although luckily in the morning, when I’m due in at work in the afternoon.)

I’m dreading going back, it makes me feel sick.  My employer hates me, and makes it obvious at every turn – because when they try and do something impacting my condition I don’t just say yes.

I’m fighting a battle with my local hospital as well.  I’ve asked them to look into my lower back issues – as most other people with the same conditions I do, don’t have the same issues with walking that I do.  Don’t get me wrong, people with Ehlers-Danlos or Fibromyalgia frequently feel pain on walking, or exhausted – but generally don’t have that strict oh my god the pain cut off point.  There is an underlying issue there.  My MRI (that took seven years of begging to get a) a couple of years ago showed some degenerative facet joints and arthritis, but both at a moderate level.  At that point I could walk about 15-20 minutes.  I can now stand for less than a minute.  So my GP and I thought it very reasonable for them to look into it, maybe look at some treatment options (usually injections).  But after a very dismissive assessment, they discharged me.   I put in a complaint, and I got back the most ridiculous letter, once again dismissing me.  So I need to keep battling them.

And finally, for a few days there seemed to be a bit less pain in my lower back, and thought it might be improving a little.  And then it decided to say haha, you’re funny, and has been on fire for three days straight.  I mean it always hurts, but this is just ridiculous.

The report from Occupational Health arrives

The report from Occupational Health arrives

Credit to Marcin Rybarczyk www.wizualnie.com

Credit to Marcin Rybarczyk www.wizualnie.com

I received my occupational health report this morning, which made for interesting reading.  I might be a little cranky today, okay?  So keep that in mind.  My work deciding not to pay me anything for the month also didn’t help.  (They have reconsidered after many phone calls and emails.)

So, the first thing the report says, on the very first page, is that I’m fit to return to work immediately – remember that!

Then page two began with an introduction from the medical company who said I’d been referred so my employer could find out what my conditions are, whether me working 22.5 hours a week is suitable, how much sickness am I likely to have, whether I still need to work from home and why, and finally whether I’d be covered under the Disability Discrimination Act (NO, it doesn’t exist anymore).

They continue to say I have a number of conditions which include a “so-called connective tissue disorder.”  What the hell is that meant to mean?  There is NOTHING so-called about Ehlers-Danlos, thank you very much.  Then they say I have Fibromyalgia, which is “aches in various joints.”  Oh, I wish.

Then the report writer passes it over to the doctor.  Thank god, I’ve had enough of that little weasel.

The GP clarifies my actual conditions, where I’m at with medication and medical treatment.  That I scored highly for anxiety and depression, and that I looked ‘profoundly unwell.’

He then says I am currently unfit to return to work, although he notes I would like to continue working. He says office based work is completely unsuitable currently due to high levels of pain and fatigue, but perhaps some limited home working would be good if it could be accommodated.

He ends by saying he thinks I would be covered under the Equality Act, under the disability provision.

But now we’re back to the weasel of a report writer, who says again I’m unfit for work (so why did page 1 say I could go back immediately?)  He then says I undoubtedly have genuine physical and non-physical problems and that he was surprised to see I have been able to achieve the levels of work that I have over the last few years.  Aw, that’s nice.

Then he turns on me and stabs me in the back.

He says commercially they need to consider if they cope with high levels of absence, whether I can work from home with the impact it will have on their ‘commercial value,’ and says he sees no likelihood of recovery for me, as my conditions are degenerative and not cureable.

Wait, we’re getting to the good part, where he shoves that knife in.  “From my reading of the referral note further home working may not be possible which then potentially leads to a question of capability.  It would be of course for the company to consider the questions and answers regarding home working, and if not a possibility than a careful response needs to be formulated to avoid critics in the event of any challenge.”

So reading between the lines, I will clarify for everyone.  We recommend she works from home, which is perfectly reasonable, as she has been doing that for the past three years in the same job, had low sickness levels, and has been damn good at her job.  But you probably can’t be arsed to put that in place, so just kick her out on capability grounds- but do it carefully so she can’t sue you.  Oh, then we’ll send this report straight to her so she can read this little shitty suggestion.

Well, fuck you too.

A visit to Occupational Health

A visit to Occupational Health

My lower back is in pretty intense pain at the moment, so I had to go to the Occupational Health assessment in my wheelchair.  I can’t get it in and out of my car alone, so I ordered a taxi.  It was the first time I’ve used public transport with my wheelchair and it went smoothly, except for trying to find a taxi in the first place.  I rang what seemed like every firm in the town before I found one that had a single wheelchair accessible vehicle.  Silly me expected them to have at least one on at all times – but by the sound of it most don’t have any at all!

English: Wheelchair adapted Fiat Doblò facelif...

Wheelchair adapted Fiat Doblò facelift taxi in Cheltenham, UK. (Photo credit: Wikipedia)

The occupational health assessment was interesting – the building wasn’t accessible for wheelchair users, and the doctor was very short on time, and his eyes widened when he saw my list of conditions and said my company should have booked more time, as the appointment wasn’t long enough to cover everything.  He asked how many consultants I was under, what I was doing while off from work (mostly sleeping!) and did a depression/anxiety checklist and then tried to finish the visit!  I objected, saying I thought I’d come to discuss adjustments and things in the workplace.  He asked what I wanted, and I said I’d been working from home at least one day a week for three years which suited me well, and while the company I was TUPEd across to said they’d honour it, they haven’t provided me with equipment.  He said he wouldn’t be writing the report, another medical company would, but he’d ‘probably’ mention it.  I then said I thought a phased return from work might help, and he said yes, they’ll probably do that.  He then said he didn’t think I was ready to go back to work, but I don’t see the point of him saying that, as it’s my GP that has to make that decision, isn’t it?

So it will be interesting to see what the report says.

DLA Saga Continues

DLA Saga Continues

On Tuesday the DLA doctor turned up at my doorstep – despite the medical being cancelled.

Yesterday the lady from ATOS phoned to give me a new date for the medical at the centre.  So they are continuing to go through with the medical despite the fact my claim has yet to be looked at.  Interesting tactics.

In other news, I’ve been signed off work for a month.  Hopefully it will help, as I’m just so exhausted at the moment.

Credit to Kurhan

Credit to Kurhan

Struggling On

Struggling On

I am really struggling at the moment.

The pain is unrelenting.  I did something to a tendon in my foot which was agonising, and I couldn’t walk for days.  It took ages to heal, and the instant it did I pulled a muscle in my chest/shoulder.  I couldn’t breathe without terrible pain, and if I moved it was crippling.

It finally healed, and my lower back started.  My lower back always hurts – it hasn’t stopped since I was fifteen.  This is worse, so much worse.

I am also completely, and utterly exhausted.  Bone-deep fatigue.  My eyes are closing against my will, and I can’t summon the energy to do anything.  I’ve been going to bed around 7-8pm and sleeping through until late morning, and struggling to get out of bed.

I am currently at work, trying to cling on, too scared to take sickness as I’ve already had one sick day since I’ve been here, and three days annual leave.

Please let this day end.

Sleeping when studying - Nakhon Sawan, Thailand

Fatigue – Nakhon Sawan, Thailand (Photo credit: Wikipedia)

Working Through Chronic Illness

Working Through Chronic Illness

For me, work is one of the most important areas to be running smoothly in my life. It costs me an enormous amount to work, but not in money – I pay in pain, energy levels, and stress.    It means not being able to have trips out.  It means if I have a family wedding I need to take not just the day off – but days surrounding it to recover.  It means an extremely limited social life. And this means I want the payoff to be worth it.

I have had numerous issues in the work place over my disability which are often caused by a simple lack of understanding.  Sometimes a lack of understanding of my illness, and sometimes quite simply of the law.

My first job was while I was at Sixth Form College, and it was at DFS, a sofa company. The job involved filling out the finance forms for customers after they had purchased a sofa and assisting customers by answering questions about the stock.

My back constantly hurt, and standing was the biggest culprit for causing even more pain. I took the job on the understanding that we were able to sit down when we weren’t serving a customer. Unfortunately, the manager had other ideas, and demanded we continually keep walking in circles around the store – even when there wasn’t a customer in sight. I have to describe the act of walking around with pain shooting across my back and down my legs, while surrounded by comfortable sofas, as something akin to torture. I was desperate for customers to come in, so I could snatch a few blissful moments on a sofa while I took their details.

I had absolutely no idea of my rights, and had never heard of the Disability Discrimination Act (now the Equality Act 2010). Not to mention I would never have dreamed of calling myself disabled at that age. I worried if I complained or was caught sitting down, I’d be fired. One day I was phoned to say they didn’t need any casual staff any more, but when I contacted the other staff – found I was the only one who had got this message. I assume in the end, the manager got fed up with me hobbling around, regularly collapsing into seat when I was unable to bare it any longer. Not that I could prove it.

My second job was at a tourist information office. It was fast paced, and my fellow colleagues were sympathetic, and took on the physical jobs, while I in return did more computer based work. But yet again I ran into trouble with my manager. I had told her about my pain condition, and learning from my previous mistake, had carefully detailed what I could and couldn’t do upfront in the interview and was thrilled to still get the job.  Yet she couldn’t grasp why it was difficult for me to do certain jobs, and seemed to take an attitude I was just being lazy.  She would purposefully pick me out to do physical jobs, while everyone seemed to look the other way.

After university, I was unemployed for some months. While the JobCentre agreed I could only work up to four days, with no standing, or heavy lifting, they began to get difficult about it. They sent me jobs for things I couldn’t do saying I had to apply for it, even if I physically couldn’t do it. One of the jobs was sorting Christmas mail at Royal Mail, another clearing a shop floor.  I was told I had no choice but to apply, or I’d be sanctioned.

English: Job Centre Plus Chadwick Street

Job Centre Plus (Photo credit: Wikipedia)

I’d been sending out application after application with no response.  I had even made an appointment with the Disability Adviser, hoping for some tailored advice, but instead just said “just continue with what you’re doing.”  Some employers I applied for operated the Two Ticks scheme, which works around the basis that if someone ticks

they are disabled and they meet the essential job criteria – they have to offer them an interview, although having applied for a number of these jobs and not heard anything back at all, I’m not sure how it works in practice.

I do think this is a great idea however.  I don’t believe it gives people with a disabilities an advantage, as some feel.  Instead it’s the combat the very common attitude of employers dismissing disabled people right away – feeling they’ll be off sick a lot, or will be nothing but trouble.  The scheme does not guarantee you a job, but allows one small barrier to be broken down and give the employer the opportunity to meet the applicant, and see their skills and work ethic before deciding whether to dismiss them or not.  The Depressed Moose details some more issues with the Two Ticks Scheme here.

It’s also a very difficult decision whether to tick it or not. I applied for a job covering a maternity leave at a university and got an interview. In the interview I was asked whether or not I needed any adjustments, and I explained the restrictions. I was then offered the job, but in the conversation the head of the department asked what my disability was. I can’t remember what I said (I didn’t have the diagnosis then), but fatigue must have been mentioned, as her tone changed as she asked if I had “one of those chronic fatigue type things”.  I said no, but fatigue comes into it.  She then practically withdrew the job offer, saying she was worried I couldn’t do the job, and they had no time to find anyone else if I took it and then quit. I said I could do it, and she ended the phone call saying she needed to think about it.

What she did was very wrong. First of all she had no right to ask me what my disability was – other than as she had done before in regards to adjustments. She also had no right to withdraw the job offer purely based on my disability.

She rang back the next day and said the job offer was conditional on me seeing their occupational health, which was fair enough. I was cleared. It turned out her husband was severely disabled, and she was very understanding with me and was a good manager.  But she could have faced legal action on the basis of her reaction.  My line manager then went on to say I picked the job up quicker than anyone she’d ever seen, and was always commenting on how efficient I was, which they wouldn’t have seen if they’d chosen to allow a symptom of fatigue to cloud their decision.

Some parts of the job not mentioned in the job description got more difficult for me. It was advertised as an office job, but it actually involved a lot of physical activity. Most of the people in the office were understanding, and some took on a few minor tasks I couldn’t do. One junior manager took umbrage at this, and made the atmosphere unpleasant to the point of him ending up being disciplined for his behaviour towards me. The same junior manager also extremely offended someone visiting an office by declaring dyslexia didn’t exist, and people were simply lazy. It turned out the visitor had dyslexia and got very upset and explained that it was nothing to do with laziness, but processes in the brain, not that the manager took any notice.

Finally, I found an understanding manager in my third job, who is sadly leaving today and the charity I work for is being taken over by another one.  My manager had previously lived with chronic pain herself, she understood sick leave, being able to only work on certain days and made allowances for me to work from home.  This has led to some minor grumblings within the team, and the idea I was getting special treatment.

What I try and explain to people is that some people need additional help in order to be equal with everyone else.  When someone is at a disadvantage, providing additional support isn’t favourable treatment, it’s helping them to reach the same level as everyone else.

Sadly, not everyone sees it that way.

It’s incredibly difficult to find an employer that will take people on with my multitudes of health problems.  One bright side is that the Equality Act 2010 has given additional rights to disabled people that may help in some ways, such as not being able to carry out pre-employment medical questionnaires, or ask about a disability up front.  Yet employers continue to do it.  It’s also difficult to hide visible disabilities, like going into an interview with a walking stick.

The difficulties I have had make me worry even more for all the people being taken off Incapacity Benefit and assessed for Employment and Support Allowance, but instead being declared fit to work.  Some even find themselves turned away at the JobCentre, as they’re declared not fit for work!

All I can suggest is keeping an eye on your rights, and fighting for them when you can.