Multiple sclerosis and Ableism

When I was first diagnosed with MS, I wasn’t aware of the term Ableism. In fact, I’ve only been aware of it over the past few years. However, looking back I can see many times where I’ve been subjected to Ableism. I had to look up the definition of the term, so I didn’t confuse it with Disablism, but apparently both are generally used interchangeably.

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Just for reference: Ableism emphasises discrimination in favour of non-disabled people, whereas Disablism emphasises discrimination against disabled people. I personally would say that both can be used as the world is built for non-disabled people, therefore all discrimination is in favour of non-disabled people.

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Anyway, that’s enough of the English lesson (sorry folks!) I thought that the best way to explain exactly what is meant by this term is to write about some of my experiences. I sadly have way too many examples too mention, but these are the most memorable.

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My experience with multiple sclerosis and Ableism

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In 2014 my MS started flaring up one day, but I decided to go to work. After a few hours at work, I had numb fingers on one hand, as well as overwhelming fatigue. I was meant to be training a team on a new process, but I needed to go home. My team-leader at the time snapped and shouted at me in front of the office at her desk. “You look fine, can’t you just stay to do some work for god’s sake?!” Rather than standing up for myself, I sat down at my desk, and attempted to do some work. I felt like I must be the problem, and that I should push myself. That was my internalised Ableism talking!

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At the same workplace, I was working towards a promotion, and I was doing the work of the next level up, and I’d passed the relevant workplace financial exam for the promotion. I’d gone down to four days per week to help manage my symptoms. My team leader at the time (a different person from the previous story), told me that they couldn’t promote me because I have MS. They also told me that because I was likely to take more sick days, and because I only worked four days per week it wouldn’t work for them. I was in total disbelief, aside from this being illegal to discriminate against someone in the workplace because they have MS, I knew that others in the office worked less than five days, and were still promoted (the manager in question also only worked four days). I felt defeated as my symptoms had been worsening, so I didn’t fight it. In hindsight I wish I had. Although I decided to only do the work listed in my job description, much to my team leader’s disappointment!

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Other than this, I’ve had random strangers asking what’s wrong with me, even when I’ve been using a walking aid (like I carry it around as a prop to trick people!). I can usually tell by their tone if it’s a friendly question, but regardless, it isn’t any of their business, and it really irks me that they think they can ask about a stranger’s medical conditions. Sometimes it seems that they feel I need to validate myself with them (I’ve been asked a lot when I use my Blue Badge for example). I’m ashamed to say that I feel like I have to validate myself with them at times. For instance, I was temping at an office and needed to use one of their disabled car parking bays. There weren’t any signs that said if I needed to pay or not, so I asked at their reception. The receptionist gave me an icy stare, then asked “What’s wrong with you then?” In disbelief I said “Pardon?” She repeated herself, and I felt that I wouldn’t get an answer unless I told her, so I reluctantly told her it was MS. I told my manager at the time who apologised as everyone was meant to have training on disabilities.

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It hurts when comments are from people I know, as I feel that I don’t have their support. Although do I really want their support if they’re like this? It was covered in my guest blog from last year, but a friend who was angry with me because I had to cancel plans to go to a concert, when I was two months post recovery from Lemtrada. They said: “Well, I would ask ‘X’, but they’re actually disabled!” (Thanks mate, try to make me feel worse than I already do why don’t you). Other times, because my MS had improved for a while after having Lemtrada, if I felt rough then I’d think that I’d had worse days, I’d carry on, rather than recognising the need to rest. I think that growing up in a culture where you’re only seen as worthy if you’re productive, and being constantly told that there is someone worse off than you, in my experience adds to my own internalised Ableism. If the MS monster is causing havoc, I’ve told myself it isn’t that bad, and to carry on.

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I think that the above, media coverage, and people’s own experiences shape our collective views on disabilities. This in turn shapes Ableism, and I think sometimes people don’t even realise that what they are doing is discriminatory because it’s normalised. For instance, if someone knows a disabled person in a wheelchair who needs round the clock care, and this same stereotype is shown in the media, the general view is that is what disability looks like. That, coupled with people hearing you’re disabled and calling you an inspiration because you got dressed today, because I think they imagine our lives must be so sad and tragic. Despite what some might say, talking about health conditions and disabilities isn’t negative, it contributes towards positive change. The only way for things to change is to call people out when they use Ableist language and hopefully end discrimination one day.

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