When your disability basically amounts to a physical barrier, I can see how it can be annoying to have people find you inspiring for being able to get your wheelchair into the local chicken shop for some fast food. And yet, I am finding these articles more and more painful to read because, for me, getting out with my kid for the day is generally a minor miracle of prior planning, having rested up ahead of time. A miracle for which I will likely suffer payback later in the form of a pain and fatigue flare. (Of course, I wouldn’t be able to eat at a chicken shack because of my M.E. related food sensitivities, and every time I eat out is a total crap shoot).
And, it seems to me, in this time of austerity, the media is more than keen to publish these “I’m just like you, I can do everything you can do” stories, which are quite positive for getting forward disability-inclusive, “don’t be a douche” messages that the public does need to read. Because, well, it is a bit shit to be praised for putting on your shoes if that is easy for you to do. But protesting these things so loudly feels a bit like throwing those kids who can’t put on their own shoes under the bus. And it also feels like buying into the party line that is taking away disability benefits from people and leaving them destitute. And lets be clear here, even people with disabilities which affect their lives in the most structurally minor of ways are still faced with added costs, stressors, and discrimination in their lives because of that disability.
Those of us who are up against the biggest hurdles of getting and keeping disability benefits, are folks with invisible disabilities, especially people with ME. We who struggle to find understanding GPs and specialists (struggle to communicate with them even when we do because of cognitive dysfunction), who struggle to get the help we need at home, who have trouble stringing a sentence together, let alone filling out a form for government assistance, struggle to pass benefits inspection because we can’t hold down a job or do our own shopping reliably but we can walk X meters and wipe our own arse, and who may not actually be getting the adaptive equipment or care packages we need to stop us being housebound even on our high functioning days. And if I manage to make it out to do my shopping, why am I *not* able to claim rainbows shoot out of my butt inspirational goddess of everything status. Instead I’m still worried that I don’t look sick enough to be in the disabled parking or for my husband to be pushing me around in the crap store wheelchair. And I haven’t even had the mental or emotional energy to claim any benefits yet. So maybe we need a little less of fitting in by “I can do everything anyone else can do” and a little more of “I’m just like you but my life is a bit harder in some respects and I need a little extra help at times….but leave me alone while I’m ordering my chips anyway because people aren’t meant to speak to strangers in public spaces, this is England FFS”.
But for myself personally? Guess what?? I need some f***ing praise for having gotten out to the park with my kid, my legs will be swollen for days afterwards, and everyone is giving me the stinkeye for watching him play from the park bench. My anti-migraine pill is wearing off and it took me 7 tries to retype “inspiring” up there in the title (and two more just now in this sentence). I have a genius-level IQ and this level of cognitive dysfunction is infinitely annoying, to say the least. Making a cup of coffee or folding the laundry is never something I thought that would applaud myself for doing, but it’s been a good day if I can do it. On a bad day that bag of laundry looks like a bag of kettle bells and I can’t lift myself up or think past the brain fog or the pain to consider what needs doing next. People with M.E. are generally anything but applauded as inspirational. For the most part we’re ignored, disbelieved, or treated as lazy fakers or just general nutters. We *need* some praise going our way. For all the little miracles that we manage. For getting through half-term with our kids. For not giving up when we are not just left with such a devastating illness in itself, but then on top of everything so let down by the medical establishment, lack of research, lack of support and government bullshit. I have new symptoms all the time and then get made fun of (good result) or chastised (bad result) by my GP when I seek help for them. Every day seems so much harder than the next. I really could do with being called an inspiration for dealing with this crap for just one damn day. I would definitely trade this disease for being a mildly patronised but otherwise healthy and smug paraplegic with a set of awesome wheels. Because guess what, not every disabled person *can* just get about their day being normal and just doing all the normal things everyone else can. And it’s not ok to seek normality and acceptance through the sort of ableism that quietly undermines true disability awareness and supports government austerity arguments. Especially if it ignores my magical arse-rainbows what I made today.
I promise I’ll have an un-grumpy blog post one of these days. Maybe. Meh.