Thursday, 15 May 2014

ME Awareness Month: Less Awareness, More Acceptance

12th May was ME Awareness Day, part of ME Awareness Month. 12th May is also an awareness day for Fibromyalgia (FM) and Multiple Chemical Sensitivities (MCS). If you would like to know more, click the link above or see one of my previous posts here.

I was intending to publish this on ME Awareness Day, but I ended up going off on a tangent which I've now turned into a whole other post (coming soon), meaning that I ran out of time.

When I first became ill with ME, I thought the idea of an awareness day was great. There is a lot of misunderstanding about ME (even among health professionals), and a lot of people don't know how serious it can be. However, in the last year or so my personal outlook has changed significantly, and I've also read a couple of articles (links later on) that have challenged me. This combination has lead to me question whether I really feel comfortable with awareness raising. I'd like to suggest that acceptance would be a better alternative, and one that I could (and do) wholeheartedly support.

One of the problems with awareness-raising is that it aims to induce pity in those on the receiving end. Diary of a Goldfish eloquently points out that this perpetuates personal tragedy model of disability. This in turn reinforces the idea that quality of life for people living with impairments must be terrible.

Of course, some disabled people consider that their lives are terrible as a direct result of their impairment (as opposed to not having the same rights and opportunities as non-disabled people). But I'm not one of them, so awareness campaigns tend to make me very uncomfortable because they do not reflect the reality of my life. Most of the time I do not suffer and I have a good quality of life. I consider this to be a result of the tools and resources I have available to me which enable me to manage my condition well and overcome a lot of the difficulties it causes.

Other problems with awareness-raising include pitting different impairments against each other and the fact that not everyone can be expected to be aware of every illness and medical condition. This is especially true when awareness days, weeks and months all seem to happen at the same time. Via social media, I have discovered that there is an awareness day for lupus this month, and it is also Lyme Disease Awareness Month. A quick google turned up a whole load more.

I also wonder about the effectiveness of awareness-raising in addressing the problems that people with various impairments face. Google tells me that awareness is simply 'knowledge or perception of a situation or fact'. Awareness simply means people know of something and maybe know about the problems it causes. It doesn't mean that they will do anything about it. I get the impression that most people who raise awareness want something to be done. Whilst it might generate much-needed charitable donations (not a bad thing in and of itself), awareness won't necessarily change people's attitudes.

It is really, really hard for people to understand something like ME. Even the nicest, most empathetic and accepting people I know, do not fully understand what it's like for me. But I am ok with that. I am ok with that because they accept me just as I am. They accept my experience as I tell it, they accept my limitations and my access needs without question.

Acceptance would be a huge attitude shift. It would not require the general public to understand complex medical conditions. It would benefit all disabled people, no matter what they think about their quality of life and no matter what their impairment is. It would mean that everyone would accept their (our) reality at face value, whatever it happens to be.

Although I would prefer acceptance rather than awareness, I would like to state that I have no issue whatsoever with the fundraising efforts that are part of ME Awareness. Fundraising is important for many, many conditions, and it isn't just about research. Charities such as the ME Association and Action for ME also provide emotional support and advocacy, which in my opinion, are just as important.

EDIT: removed reference to Autism Awareness Day because it isn't in May, it's in April.

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