Helen Smith: Defining disability: A many-edged sword

In the UK, disabled people have protection from discrimination and disadvantage via the Equality Act 2010.

The definition of disability for this purpose is broad: “A person has a disability… if he or she has a physical or mental impairment and the impairment has substantial and long-term adverse effect on his or her ability to carry out normal day to day activities”.

But somehow in employment, as in life, disabled people are still divided into two distinct categories: either too disabled (to work) or not disabled enough (to get help). It’s the epitome of lose lose. But as with most things, it’s not that black and white.

What about the (vast majority of) people somewhere in the middle, who would benefit a lot from a bit of support and understanding — who, with a bit of extra effort on both parts can continue to live full and productive lives — and work?

I would argue that most human beings benefit from a bit of support and understanding now and again but if you’re having to make that extra effort every day at work through no fault of your own, then requesting a reduction in hours to manage things better might also seem like a reasonable, proactive thing to do as an employee.

If that support and understanding is not forthcoming due to the inflexibility of your job role or management then it might be your only option.

Having your disability status repeatedly interrogated in order to do this by those who are in a position to help therefore, is quite an affront. It is disrespectful and undignified because not only is your identity and integrity being questioned but you are put in the difficult position of having to prove that you are able to do your job whilst also trying to justify that you are deserving of help.

This is problematic for many reasons, not least because this is no longer Victorian Britain (although current Conservative policy assessing severely disabled people as fit for work and requiring mothers to prove they were raped to get child benefit might suggest otherwise) but it’s also a pretty small and awkward space to navigate at work.

It only heightens the power imbalance and doesn’t make for a very supportive or fruitful working environment, in my experience. Most employees don’t have to discuss their personal lives with their managers, and their managers, and their managers in a futile cycle of despair — and quite a few people in my experience seem to find this non-binary disability thing a difficult concept to grasp.

Most people with non-visible illnesses or disabilities have the added inconvenience of regularly having to explain themselves to other people or to justify their adjustments and aids. We’re given none of the benefit of the doubt and all of the burden of proof. If it’s not obvious we’re not believed. If we make it obvious, or assert our rights we’re told to be less bold. Either way, we’re vulnerable to discrimination.

Most disabilities are complex by nature and difficult to evidence, let alone explain but there are some more basic concepts that the general population seems to struggle with: Not everyone who looks OK is feeling OK; not everyone who is obviously ill needs your unsolicited advice, not everyone who uses a wheelchair needs it all the time; not everyone who needs a hearing aid uses it all the time… etc. But this leads to confusion and in some cases aggression (yes, really) from people who think they know better than you do about your own personal circumstances.

The problem with this is we have two choices (bar going about our daily lives with a miserable pained expression on our faces, rattling medication, disability aids on full display): refuse to justify ourselves or accept the responsibility to educate and explain to every casual observer your own personal circumstances.

Should this really be our job, on top of coping with the illness, on top of our actual job? Besides, a lot of people don’t actually want to listen to why they’re wrong, which makes it all the harder: Especially in a work environment when you can’t just walk away or freely speak your mind.

We have to choose our battles carefully; we have to make daily decisions about how much to give away; we have to police our own language so it doesn’t upset or offend while other people walk around offending with ignorance and impunity.

If I say “headache” or “dizzy” when I mean debilitating migraine associated vertigo, or if I say “fall over” when I really mean “drop attack”, or if I complain of hearing loss without wearing my hearing aids, of if I don’t talk about Meniere’s in terms of disability and keep reminding everyone who questions it, no one gets it — and that’s the real disability.

I never know how much to say to people at work. I don’t want to draw attention to myself or spend more time talking about it than is really necessarily. I don’t want them to think I can’t do my job but I do need them to understand my situation so I can get on with my job — and I don’t see why I should feel bad about that.

There is enough guilt and misery involved with having a long term illness; most of it to do with not being able to get on with your life as easily as before; usually due to other peoples’ attitudes and ignorance.

I have been diagnosed with Meniere’s disease. Meniere’s is covered by the Equality Act as a disability precisely because of the long-term, recurring and fluctuating symptoms.

This means that their impact may be sporadic and less obvious but it doesn’t mean that they are not there. It means I am supposedly protected from discrimination and disadvantage, including ‘reasonable adjustments’ at work but it doesn’t mean that you’re entitled to know everything about my private life in the process or that you can drag out the process for months on end.

Unless we start implementing flexible working policies properly across the board for everyone, it might mean I have to tell you about my disability to get those adjustments but it doesn’t mean I want to be defined by it. And it could just mean that you also have to make an effort — to adjust your own discriminatory attitudes and actions.

Read Helen’s blog here:  https://starfishmainlyobeys.wordpress.com/