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7 December 2015

Benefit assessments are making society more hostile towards the invisibly disabled

Why is there such a huge discrepancy between the way we treat people with visible disabilities and the way we treat those with invisible ones?

By Amy Mackelden

Continued attacks on the disabled include several recently reported cases of chronically ill individuals finding anonymous abusive notes on their cars when parked in disabled bays, despite having Blue Badges. This is evidence of an increasing climate of hostility towards those with long-term invisible illnesses, and disabilities that don’t present in a publicly recognised way.

Part of the problem is the distinction being made between what is “normal” and what isn’t. Surely the norm is subjective, like one’s taste in music (who is this Adele, anyway?) or what flavour ice cream you prefer (mint choc chip, obviously)?

Increasingly, judgements on a person’s wellbeing, ability level, and health in general, are being made on face value, without taking into account the possibility that that person could have any number of invisible illnesses or disabilities. And with such a hostile climate surrounding the sick and disabled, it’s hardly a stretch to suggest that much public opinion stems from recent government policies relating to disability benefits and so-called reform.

I have multiple sclerosis, but don’t receive the PIP benefit, and was unsuccessful challenging this decision at appeal in court. I have nothing to show for my disability, even though I’m very unwell some days, my energy levels and symptoms are unpredictable, and the disease-modifying drug I receive once a month carries risks.

I’m often incredibly vulnerable, especially as my illness is (currently) invisible for the most part. Sure, you might call me “lucky” for not needing a walking aid, but that doesn’t negate the fact that I have a lifelong incurable illness that impacts my daily life and ability to work. The cherry on top is the word “degenerative”. What more do you need?

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Lately, I’ve taken to carrying a hospital letter around with me should anyone try to turf me out of a much-needed seat on public transport, or question why I’m using the toilet before them. This level of fear – and it is fear, of being different, being noticed, like a target – is an extra weight on individuals who are already burdened with an illness or disability.

When I tell people I have multiple sclerosis, they’re often surprised, not because I look well, which I do sometimes, but because I’m young. They also assume that I must automatically receive benefits, as MS is still considered to be a very serious illness. By most, that is. Not by the ATOS assessor’s report: “Complexion is good. Did not appear to be tired.”

Upon entering the courtroom for my PIP Appeal Hearing, one of the panel remarked that I must be having a good day because I looked well. Again – this is not how invisible illnesses work!

Why is there such a huge discrepancy between the way we treat people with visible disabilities and the way we treat those with invisible ones? And why are sweeping judgements that assess a person’s health and ability not considered dangerous or even illegal? Shouldn’t the Equality Act 2010 be coming into play more often now than ever?

Obviously, people are people and shouldn’t be defined by their disability. But in the increasingly hostile climate currently being fostered against those with disabilities, visible and invisible, it’s becoming ever the case that a person must announce, reinforce and even act out their disability or illness. And is it any wonder considering that the ESA and PIP benefits assessments attempt to capture the un-capture-able?

There is often no way of calculating the average of how an illness or disability affects an individual on a daily basis.

With this in mind, when I share the testimonies of people I’ve spoken to who have experienced prejudice, I won’t tell you their age, where they live, or their occupation. Instead, with their permission, I’m following their names with diagnoses. Which is not to say I’m defining anyone by their disability. Rather, the current benefits system, and society in general, seems to be forcing people to define themselves by their disability and nothing else. Which is very tricky when afflicted by an auto-immune disease, as no one can see what’s going on inside your body (real life is not at all like Innerspace).

Emily, who has Crohn’s disease, says:

“Even though I’ve always had a ‘can’t wait’ card and a disabled toilet radar key, I’ve had people tutting at me and questioning me because I’m not a wheelchair user. It’s not as bad now I have my walking aid but when I didn’t have any ‘visible’ affliction, strangers believed it was completely their right to question me.”

It’s no wonder that many people with lifelong illnesses and disabilities feel the need to perform their disability, due to fear of being questioned and put down in public.

However, having the right documentation is not even enough to stop the prejudice. Emily continues, “Once I was using my Blue Badge and was confronted by a woman, asking if I was using someone else’s badge just to be lazy. She said I was ‘too young’ to be using the disabled bay. I didn’t realise there was an age limit on having a crippling incurable illness.”

Age is an important factor in the general public’s understanding of what being disabled means. The problem is that the majority of disabilities aren’t age-dependent and can occur at any point in a person’s life.

Jayne, who has multiple sclerosis, says, “I had work colleagues who thought I was making it up. People still don’t acknowledge the fact that I have MS because I apparently look so well.”

And these face value judgements are being made on a regular basis, including during the PIP assessments and appeals, when fluctuating conditions are supposed to be taken into account. Which begs the question, what use is the Equality Act 2010, designed to protect people from discrimination, if it is not enforceable during assessments carried out for government benefits?

Furthermore, “The Act states that, if an impairment has had a substantial adverse effect on a person’s ability to carry out normal day-to-day activities but that effect ceases, the substantial effect is treated as continuing if it is likely to recur.” Not so, according to the PIP assessment process.

As disabilities often affect individuals in very different ways, there is also misjudgement among those with the same illnesses. Beth has relapsing remitting MS which is being treated with the disease-modifying drug Tysabri, which is prescribed to those in whom the illness is aggressive.

Beth says, “I have been fortunate enough to never need a stick or wheelchair. Somewhat ironically I have had other people with MS at the Tysabri infusions say I don’t look ill enough to be there.”

The current misunderstanding of what disability is or entails is so pervasive that even those who are ill themselves are judging others with scrutiny.

Another woman with multiple sclerosis, Diane, says:

“People who don’t know me treat me as they would anyone else, and why not? The only negative comments I’ve gotten are when using the disabled toilet and people have said such things as ‘Why not leave this for those who really need it?’”

And Diane makes an important point. The issue isn’t that we should treat people with disabilities differently. A person is a person regardless of their health. However, the current political climate appears to encourage prejudice and distrust against those who are not visibly disabled. Instead, many people are living in a constant state of fear, of being called out for being a fraud, of verbal and physical abuse, and of a benefits system that does not understand so many conditions, and seems to ignore personal testimony when it is given.

We shouldn’t be treating those with disabilities differently. We should be treating the disabled with the same respect that every human being deserves, without fear of persecution or prejudice. It’s absolutely an issue of equality. Why are we allowing our opinions on disability to be shaped by propaganda? Isn’t it time that disability was viewed on a spectrum, with chronic illness taken into account as a legitimate issue?