Big Brother.

The Department of Work & Pensions are best described as a necessary evil, & that’s being generous. You’d think that an organisation that is supposed to support people in finding employment & aiding us in retirement would be well-loved, but the fact of the matter is that much like the NHS, the idea has outshone the execution.

Lots of people have cause to dislike the DWP, but the hostilities are perhaps felt most strongly among disabled people. Simply put, the majority of us live in fear of them.

At the time of writing I’m on the higher mobility rate of Personal Independence Payment & get nothing for the care rate. My powered wheelchair, without which I couldn’t go to work, is paid for on a scheme that takes the money from my monthly allowance before I have received it, and the little that’s left over goes towards (but by no means pays for) medication, other mobility aids, & transport. When this contract comes to an end, I plan not to renew it, but to buy my own wheelchair independently. Why? Because all it would take is someone from the DWP to put my benefit up for early review & the rate be dropped, & I would lose my wheelchair instantaneously.

This may seem paranoid but multiple acquaintances of mine have already experienced this, & the cases reported in the news demonstrate that this is not as rare as you would think.

CCTV footage from public places, particularly supermarkets, has been used as evidence in court to show that someone is not disabled on multiple occasions. On the surface this might seem sensible, or at the very least, not objection-worthy. However, despite clearly stating on my application form that I am capable of standing up & walking short distances with support, & that my condition varies greatly day-to-day, I still find myself looking for all the CCTV cameras in a store when I’m on my walking frame. I worry that I don’t look disabled enough, particularly on days when I feel well. Quite frankly it is like living under the judgemental gaze of George Orwell’s Big Brother.

At this point people like to argue that if you’ve done nothing wrong, you have nothing to fear. I wish this was true but I fear wrongly convicted criminals might feel a little differently. The fact of the matter is that while in a court of law you are innocent until proven guilty, the reverse seems to be true for disabled people.

For example, I have to watch what I post online, which for someone with a blog about disability is rather contradictory. I like to take photos of my outfits for Instagram, but I’ve taken to sitting down for most of these out of fear that someone could take a snapshot quickly taken before sitting back down, & use it to claim I’m lying. Every picture & comment becomes a calculated risk, & even this blog post is no exception.

Even being called back for your review assessment after the assigned period of time since the last one is dehumanising. Assessment centres are often inaccessible, but your application will be denied automatically if you fail to attend.

Even if you do make it into your assessment, the assessor is not the one who makes the decision about your benefit; this decision is made by someone who has never met you. They take the assessors report, look at any other evidence you have managed to supply (the majority of which they will tell you is ineligible due to arbitrary reasons), & having never seen how you have to live will make a decision that controls how you live for the next few years. Appealing poor decisions takes months, is highly stressful, & everything you say & do is subject to scrutiny for the duration of the procedure. Anyone who does choose to appeal is made to feel like a criminal.

Disabled people are not criminals. Being disabled is not a crime. Yet it is demanded of us that we repeatedly prove our innocence. Under any other circumstances this would be deemed diabolical, yet it is how many of us, myself included, must live.

The Disadvantage of Benefits.

Just about every day there is a story in the news about benefits, the money provided by governments to disadvantaged individuals to help make ends meet. The story is usually one of three; a huge fraudster has been caught, someone who clearly needs and deserves the help can’t access it, or benefits to one group of people are being cut yet again. Perhaps my view of these matters is biased but more often than not, the benefits in question are related to illness or disability.

If disability fraud is irritating to the average tax-payer then it is soul-destroying to those with genuine disabilities, because every time one of these stories hits the news you might as well draw a huge target on our backs. The pointing fingers and groundless accusations pile up all too quickly; I can feel total strangers staring at me, and hear them making snide comments when they think I’m out of ear-shot. On a national level, the pressure to make the thousands of disabled people accountable for the crime of just one leads the government to introduce yet more cuts. As with any budget cuts those subjected to them are put through intense stress and anxiety.

During the recent period of cuts in the UK I spent most of my days with a tiny, niggling thought lingering at the back of my mind that I couldn’t get rid of, like an itch somewhere I couldn’t reach. What if my money got cut? Cutting my payments would mean I could no longer afford monthly payments for my wheelchair, and being able to access one through the NHS is pure myth. Even if I did manage to sit through the months of waiting for a referral to the specialist, they would give me a cheap manual chair that I couldn’t push myself, and since I don’t receive any money towards carers I would be housebound. Let’s just say my mental health took a turn for the worse and I know that in other cases, suicide becomes a seemingly viable option.

There is a misconception that Personal Independence Payment, the disability payment scheme in the UK, is money given to disabled people to buy essentials and pay the rent. Personal Independence Payment is there to help people afford carers or equipment to give them enough independence to be able to get a job to pay the bills. I cannot afford to sit idly at home all day living off my benefits; I work, but I need my wheelchair to be able to work. Removing my benefits would simply put me out of work, costing the state even more in the long run. It hardly fills me with pride that I need what essentially boils down to sympathy money from a government I disagree with on just about everything, simply so I can have a life.

I know that many strangers see the wheelchair and immediately think “unemployed scrounger”. I could stop and tell these people the truth. I could let them know that they are wrong and that they are prejudiced and discriminatory too. I could ask them why they didn’t have better things to do than judge someone for having some time on their hands. However this would require them to speak to me first to tell me what they thought my wheelchair represented, and these people would never speak to someone they assumed to be a fraudster. They would also, ironically, take offense to the fact that I read their expressions and assumed that they were thinking these things. It would serve no purpose.

Writing it down, on the other hand, doesn’t require someone to initiate the conversation first…

Disabled Benefits That Aren’t Money.

Despite all the hassle that comes with using a wheelchair there are a few small perks in the midst of my hectic life. Most of these are small and perhaps insignificant, but they are still positive things that wouldn’t happen if I didn’t use a wheelchair. Since I am often subject to other’s pity, it seems reasonable that I should introduce some of these concepts to the glorious source of useless information and time-wasting that is the internet.

I have discussed how I am regularly treated as if I were stupid and am spoken to in patronising and condescending tones. While this is endlessly annoying, it does have the silver lining supposedly displayed by all clouds outside of Yorkshire; I am able to get away with what is deemed by others to be immature or childish behaviour. I can openly laugh at toilet humour in public, chase pigeons along the muddy pavements, do doughnuts in my wheelchair in the park, and best of all, I can go and see children’s movies at the cinema without judgement. The best examples of this were going to see “Minions” and “The Secret Life of Pets” at 19 and 20 years old respectively, and despite my age none of the cinema staff so much as batted an eye lid. My dad, who was at least as excited as I was if not more so, was presumed to be a poor carer subjected to such childish amusements simply to please me, so also evaded judgement.

Other benefits arise from the physicality of using a wheelchair; shoes are never worn out by treading the unforgiving streets of Leeds and Bradford, and since mine now last me for many years, I no longer feel guilty if perhaps those shoes come with a larger price tag.

Similarly, one embarrassing situation that plagues my able-bodied counterparts derives from gravity, and that is my inability to trip over. Spider-man will never be able to impress me by catching me and my lunch at the same time, so he’ll just have to use webbing to spell out anti-ableism messages along the bridges crossing the ring road. According to rom-com legend I’d never have met the perfect man either. However, besides these trivial matters the inability to fall is highly useful, and never more so than when leaving Wetherspoon’s on a Saturday night.

Another useful perk is the ability to skip my place in a queue and get away with it without making anyone angry, which is of considerable surprise to anyone living in the UK. I am usually taken to the front of queues for the use of disabled facilities such as toilets or changing rooms, and shops such as Primark allow disabled people to pay first at an adapted till only opened when disabled people are paying. During Fresher’s Week, when I went to collect my student card and related paperwork, I was allowed to skip a queue that contained hundreds of frustrated freshers. It is rare that anyone gives me the burning side-eye, tut, and miniscule shake of the head reserved especially for queue-jumpers in England. In all fairness, the queue-jumping rule is usually based on the fact that some disabled people may need rapid access to a bathroom due to their condition, or that their immunity could be impaired and so sitting in the midst of a crowd presents a true danger. However, for the rest of us, it’s nothing short of amusing to be able to get away with something reserved for the closest circle of hell according to most Brits.

As someone who uses a wheelchair but can also stand up, I have particular fun in shops. The looks of horror, dis-belief, and bewilderment I receive as I leap out of my wheelchair and yell “It’s a miracle!” at the top of my voice never fails to amuse me, although perhaps this prank is a little cruel.

It is not necessary to look upon anyone with a disability with sympathy, and empathy or compassion are far more welcome. Our lives are different to the able-bodied, but that does not make us inhuman or superhuman, especially as being able-bodied doesn’t eliminate you from experiencing the ups and downs of day-to-day life. The ups and downs do differ between the two groups, but the pattern remains the same; life and all it’s glorious drama does not discriminate.