This a tough one, and one I’ve been avoiding. Just the words ‘Disability Living Allowance’ makes my stomach turn into a big knot, and a nauseous feeling to pass over me.
There is a perception that disabled benefits are easy to get, and that most are fraudulent so I just wanted to talk about my experiences so far.
For a start – the basics of Disability Living Allowance (DLA). It’s a benefit for the under 65s (over 65s get Attendance Allowance unless you’re already in receipt of DLA when you turn 65). It has two components to it – mobility, and care. The idea is that they aren’t really meant to worry what’s wrong with you, but how it affects you. So a person can get either one component, or both. The care part is then split into three – low rate, middle rate and high rate. The mobility has just two parts – low rate and high. Low rate mobility is meant to look more at the non-physical side of mobility (bear with me here!). This is usually around someone not being safe to walk without supervision i.e. they have a condition that means they struggle to understand danger, or perhaps they regularly get dizzy and may end up in the road, or may sometimes refuse to walk at all due to a condition such as Autism. The high rate is meant for people that (usually physically) can’t walk at all, or is “virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk.” It can also be awarded for sensory conditions.
If someone is awarded High Rate Mobility, they can join the Motability Scheme and swap their money for a car, or wheelchair or scooter. A car can be adapted to your needs either for free, by a grant or by self-funding.
I’ve tried to summarise it simply, because it’s actually a very complex benefit with pages and pages of rules and laws, that they frequently completely ignore. Okay, my bias is showing already!
One other important point – the benefit is for the additional costs of being disabled. You can work full time with it and still quality.
I first applied some years ago. I was at university when I did so, which didn’t help in hindsight. A lot of the things I had a problem with at the time I found easier at university. At home my bathroom is downstairs, my bedroom is upstairs. At university my bedroom was downstairs along with the bathroom, and it was right next door. My bath is a pain in the bum to get into, but at university it had an actual shower with a low step. My care needs were no where near what they are now, but my mobility was fast going down hill, and I was struggling on by the skin of my teeth.
I was immediately turned down and so I appealed and went to tribunal. By the time it got to tribunal I’d finished university and was back living at home.
The tribunal was interesting. They started out seemingly pleasant, but soon got down the business. A tribunal is made up of three people – a judge, someone with medical knowledge (usually a GP), and someone termed a ‘disability specialist’ – at that time someone who works with disabled people.
Credit to Jason Morrison at http://www.creationcafe.com
First of all the GP argued with my diagnosis – despite not being a rheumatologist or specialist in any way. Without examining me, he decided I couldn’t possibly be hypermobile.
The disability specialist was rude, and ignorant. She asked silly questions like why my car wasn’t adapted (because I need high rate mobility to get it adapted, or thousands of pounds?)
The form for DLA is very long. It tends to work by starting with tick boxes – for example – do you struggle with walking yes/no. It will then ask in what way – i.e. do you limp, walk slowly, etc and then finally has a box for you to explain. (These aren’t the actual questions, by the way.) It asks the same questions in slightly different ways over and over, and there are multiple tick boxes on each page.
At one point the judge asked if I needed help during the day. I said yes. He asked me to turn to a certain page of my claim form. There was a hush while everyone thumbed through the form. He asked the question again and pointed to a single tick box on the form that I’d left blank. I hadn’t said I didn’t need help, or that I did. It was blank. However every other box on the page was filled in, and there was a list of ways I needed help in the text box, so it was clear it simply hadn’t been ticked in error. He then asked me to turn to the final page where the declaration is. He slowly read it out – that to the best of my knowledge everything was truthful in the claim form. Did I agree? Yes, I said. But you haven’t ticked the yes box, he said gravely. So it’s false. I felt like I’d just committed a crime.
At another point he began questioning me about distances. I explained to him I have dyscalculia, so distances mean nothing to me, so could he use time instead. (I.e. can you walk for 30 seconds, or whatever, because that I can understand) Instead he angrily kept repeating the same question using distances. My mum saw I was getting upset and tried to help me by explaining the distance, but he snapped at her to be quiet and ‘not to help me’.
The questions about how I coped at university kept coming up. I tried to explain the above – the ways I’d managed, the support from friends – but it was just rejected. The questions continued in the same vein, until they asked me to leave for a few minutes, and then called me back in to turn me down. I can’t say I was surprised. I decided I would apply again, as my condition had continued to go downhill anyway.
My experiences with my second claim can be found here.
Last weekend I went to Colchester Zoo for a Sensory Day with some members of Fair Access to Colchester.
I tried to get a scooter from Shopmobility for the day – they usually have a Paris Shoprider that easily breaks apart to go in a car, which I’ve taken on holiday numerous times. Sadly, someone had taken it out for sixteen(!) weeks and they only had one.
Option two was an electric wheelchair they found in the corner of the storeroom. It hadn’t been used in some time, and didn’t fold up. They charged it up and we went to collect it. We put the seats of the car down, and three people lifted it in with some difficulty. The massive battery underneath made it incredibly heavy and it didn’t disconnect.
Uh oh! How were we going to get it out? Luckily my mum, with help from two other people managed to get it out, and we were off.
The chair was the size of a normal wheelchair – not those massive things you see, and the battery tucked underneath nicely. It went at a decent speed, and was easy to control.
The zoo is incredibly hilly, although they have a yellow line going round that follows the most mobility-friendly path but it was still pretty tough going. It was fantastic. I could choose where I wanted to go. I could keep up with everyone, and no one was exhausted pushing me. Unlike a scooter, I could go right up to things, and manoeuvre myself to see what I wanted.
There were a few hairy moments on steep hills where it didn’t respond to my controls, and someone had to grab the chair before a bowled over an entire family!
Then the battery started draining. It started on five, and seemed to dip down with increasing speed. But we hadn’t reached the elephants – basically what we’d come to see! Determined to make it, we rushed on, skipping the smaller attractions.
An African elephant at Colchester Zoo (Photo credit: Wikipedia)
We made it just as the battery died completely at the furthest point of the zoo. The zoo had an elephant feeding for what they deemed as “registered disabled” people only (although there is no such thing as registered disabled anymore.) We then crowded round the chair to try and find the switch to make it manual, but realised with horror there wasn’t one. It was a dead weight, the wheels totally locked, and weighing a ton.
Finding a zookeeper, we told him off our plight. He radioed the office and asked someone to bring a manual wheelchair, and send help for the other chair. Four zookeepers joined us, and three of them picked up this heavy chair to walk it all the way across the zoo to put it in our car. My mum went with them to direct them, and they then found out our location and drove her back to us. They were total stars and saved the day.
The manual chair was fine for the flat bits, but they were few and far between. My guilt wouldn’t let me ask others to push me up hills, so I had to keep getting out which meant I reached my limit extremely quickly, my back went into spasm and I was totally exhausted. Everyone took it in turns to push me on the flat sections and were so helpful.
So massive thumbs up to Colchester Zoo for rescuing me, although please don’t try and attempt it with a manual chair!! We sent a letter of thanks to the men that carried the chair back to the other, and the one that brought the manual and pushed me for a little while to reach the others who’d continued to the next section.
Colchester Zoo have regular Sensory/Disability Open Days which include BSL Demonstrations, feeding sessions for people with disabilities only, and more.
Their events page shows when they will next be having an open day.
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.
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.