The Millions Missing global protest for ME/CFS funding in May this year. Pic: www.meaction.net

Everyday Ableism Is Killing People

Are you an ally — or part of the problem?

[CW: suicide]

I’ve been disabled due to ME/CFS for over 15 years now, and recently I’ve reached a point where I can no longer keep my mouth shut about the issue of everyday ableism.

Because it’s killing people. Lots of them. And it could’ve killed me.

As I say, I have ME/CFS, which isn’t (usually) a life-threatening illness. It is debilitating and drastically reduces quality of life, but there’s no reason why it should kill me. What nearly killed me wasn’t ME, but able-bodied people’s attitudes to it. It was years and years of erasure and prejudice from all levels of abled society — ranging from family and friends to the NHS and the Government — that pushed me to a point where I nearly took my own life, two years ago this summer.

‘Can walk if she wants to’

I’ve had ME since my first term at university. It took me 12 years to get a diagnosis, because a series of GPs refused to listen to my reports of relentless exhaustion, flu-like symptoms, and cognitive impairment so bad that I couldn’t remember conversations from earlier in the day, or concentrate to read more than a few pages of a book at a time. These GPs, in many different ways, basically told me to pull myself together and stop imagining things, as did various members of my family and friends. So I did the best I could to do push through, all through my twenties, and became so ill by the age of 30 that I ended up about 80 per cent bedridden for several years, without diagnosis, treatment or benefits.

During this period, I feared for my survival on a daily basis, because I couldn’t work to support myself but I couldn’t get anyone to tell me what was wrong, or offer me official backup of any kind, whether practical, financial or emotional. An overwhelming fear of losing my home and my means to feed and clothe myself, while I was powerless to do anything about it because I could hardly get out of bed, hit me every day as soon as I woke up, and that went on for weeks, months, years. This experience, on top of the health condition itself, was traumatic. It left me in a helpless, zombie-like state most of the time. And the weirdest and most dehumanising part of it was my sense that no one else around me could see what was happening. I looked fine, so to abled people, I must be fine. The number of people from all walks of life who diagnosed me as ‘fine’ and felt that was their right, was astonishing. They call it an invisible illness because you can’t see the symptoms from the outside, but they might as well call it that because invisible is what you become.

It was mainly friends who also had invisible disabilities — not abled people — who helped me through. While battling with their own crises and symptoms, they also reached out to me, filled benefits forms in for me, cooked meals and tidied up for me, listened to me cry and despair, told me I was going to be OK, that I wasn’t going to die. That even if I lost all ability to support myself and couldn’t get benefits, they would provide the means for my survival.

I wasn’t helped by the latest negligent GP, who sent me away from her office time after time over the course of those years, refusing to look into my symptoms further, and wrote ‘can walk if she wants to’ on my Disability Living Allowance application (I didn’t get the benefit). I was so unwell that I could only drag myself the short distance to her office and face her disapproval and disbelief every couple of months. I couldn’t even argue with her because my brain was too foggy to be able to form complex sentences. I was incredibly lucky that on one of those visits, I got angry and raised my voice to her, and was immediately referred to a psychiatrist (because clearly I was crazy). The psychiatrist told me I definitely wasn’t depressed, diagnosed ME/CFS and told me I should be getting a referral to a specialist clinic. It still took another 18 months and a letter to my MP to get that referral.

I wasn’t helped by the family member who told me she wished *she* got to spend all day in bed, or all the other family members who sat and nodded as she said it.

I wasn’t helped by the able-bodied friends who disappeared very quickly, who couldn’t work their schedules around my requirements.

And later on, after diagnosis and treatment, when I began to look for community, to begin to repair the damage from 15 years of terrifying isolation, I wasn’t helped by the people who told me things like: if I did yoga every day I’d get better, and if that sent me into a crash, I wasn’t trying hard enough; if I only ‘practised gratitude’, then the constant anxiety inherent in never knowing when the next crash would come, whether I’d be able to keep that job or that relationship or that home, wouldn’t be a problem. That my illness was just about ‘giving myself permission’, and would be solved if I really wanted it to be.

I wasn’t helped by the abled people who claimed to run accessible events but greeted my particular accessibility requests with annoyance and refusal, even when I knew it was entirely possible to fulfil them. I just need a quiet place, away from the group, to lie down in for short periods. A separate room is great, but a big cupboard will do. Even a screened- or curtained-off area, in a pinch. It’s not actually that hard. But you would think that I had asked for the Earth to be moved, just because I felt like it.

Some technical terms

People who write about social justice have a word for the kind of experience I describe above: they call it a microaggression. I found a good definition in Psychology Today: “Microaggressions are the everyday verbal, nonverbal, and environmental slights, snubs, or insults, whether intentional or unintentional, which communicate hostile, derogatory, or negative messages to target persons based solely upon their marginalized group membership. In many cases, these hidden messages may invalidate the group identity or experiential reality of target persons, demean them on a personal or group level, communicate they are lesser human beings, suggest they do not belong with the majority group, threaten and intimidate, or relegate them to inferior status and treatment.”

Over the past couple of years, I’ve been learning about microaggressions and similar ideas as part of a queer, sex-positive community that supposedly cares about social justice. But I’ve never heard anyone talk about microaggressions in relation to disability. I’ve been learning about correct gender pronouns and bisexual erasure and whitesplaining and mansplaining (all of which have been very important and useful concepts to me), but I’ve never heard anyone in my community discuss the systematic oppression of disabled people going on in the UK under the current government’s austerity measures, and rarely been aware of anyone genuinely seeking to address the exclusion of disabled people from the community itself, although lip service is often paid.

And I get it — everyone has to pick their battles. Everyone has only a limited amount of energy they can put into caring about things. And people care about the things that are closest to them. In my community, that’s queer politics, gender politics, feminism, to a lesser degree racism and cultural appropriation (it is an overwhelmingly white community). Maybe it’s just a caring too far to give a shit about the disabled, too. And maybe that makes it OK that, when I share something on my Facebook feed about disability — news stories about those dying as a result of tougher benefit sanctions and tests under the Tory Government, posts about my own experiences of exclusion, that kind of thing — the lack of response from the abled is deafening. Those who comment and share those things are generally also disabled, or they have people very close to them who are. Disability is never the able-bodied’s problem.

This is particularly odd when you think that most people are likely to be disabled at some point in their lives. But maybe it’s the very fact that disability/long term illness can happen to anyone that makes it so hard for the able-bodied to think about it. Able-bodied privilege is never guaranteed, unlike male privilege or white privilege. Maybe it’s easier, then, to blame those who’ve become disabled than to face the reality that it’s always a threat to you too. If the ill person is to blame for their illness — if they’re not managing it right, or if they’re exaggerating how bad it is, or maybe if they’re making it up altogether — then the abled are safe from something as inexplicable and frightening happening to them as ME, or severe mental illness. It’s the same, I suppose, as poverty, or homelessness. No one wants to believe these things could happen to them, so it’s easier to dehumanise those it’s happened to — pretend they’re in a different category altogether. And thus the Government gets to scapegoat and oppress and — yes — indirectly kill the most vulnerable in society without the more privileged lifting a finger.

The uncanny valley of invisible disability

I think there’s also maybe something about the fact that I look able-bodied that freaks people out. Maybe it’s a kind of ‘uncanny valley’ situation. They had me all categorised in their minds as ‘just like them’ when I walked into the room, and then I said something about my health — that I needed to lie down for half an hour because of my ME, for example — and suddenly things got confusing. I don’t fit neatly into the ‘disabled’ box (because to be disabled you have to be in a wheelchair, right?) and I don’t fit neatly into the ‘abled’ box, so how to conceptualise me? It’s similar to my experiences of coming out as bisexual (a process that has to happen over and over because I don’t ‘look’ queer) in a lot of ways — it just messes with people’s heads, and when people feel confused, they get defensive. It’s human nature — I get that — but that refusal to accept someone else’s lived experience because it confuses and threatens you, that gaslighting (because that’s what it is) repeated over and over again, dehumanises and marginalises and in the end kills people — nearly killed me.

As London life got more and more expensive and I was forced to live in increasingly unstable accommodation, being moved from one place to the next, told I wasn’t ‘vulnerable enough’ for housing or psychological support, still unable to get disability benefit, still dealing with these daily denials of my basic experience by abled people, I became suicidal. I didn’t tell anyone. I just made plans. I started to collect the medication I needed and to throw away everything I owned. I had an obsession with leaving as little trace of myself in the world as possible, as though I needed to complete the process of erasure that the rest of the world had begun against my will. It felt as though human society had been telling me for my whole adult life that it didn’t want me in it, that there was something really badly wrong with me, that made me unfit to be part of normal society, and it was only going to get worse. With no stable job (I was forced to work freelance and only a few hours a week because that was the only way I could fit it round my fluctuating symptoms), no savings, no pension, no access to credit, no supportive family, no partner, no community or proper circle of friends and no disability benefits, growing older was a terrifying prospect. It seemed like I would be better off dead.

Why I didn’t do it

I didn’t do it, because in the end I got angry. Because over the course of one long night I looked back over my life and came to the decision that I wouldn’t let the people who had let me down — who had already decided that I should be ignored and excluded, that I should be left to struggle for the most basic existence — also have the power to decide whether I lived or died. I was lucky that I had the ability to do that — and that I had a small core of people around me who cared about me and listened to me and encouraged me to fight back. I was lucky that my ME was ‘mild’ enough for me to have the energy to think myself through to that point.

I moved out of London to the only place in the south east I could afford to rent in, I met an abled person who was not only willing to accept the limitations imposed by my disability but often talked about wanting to use some of their privilege to make up for my lack of it. And one day, just a couple of months after I had made the decision not to give up fighting, I got disability benefit. When the letter arrived, I sobbed with relief in the hallway of my shared house. Maybe, too, I was sobbing with grief for the person I could have been, for the life I could have had, if I had been listened to in the first place. If I had got that diagnosis and treatment aged 18, not 30, when I would have had a much better chance of fully recovering.

I posted on Facebook about it and was contacted out of the blue by an old and very dear friend.

‘I’m really happy you got your benefit,’ she said. ‘We just lost my friend Anna.’

Anna, I learned, had been like me. She had chronic fatigue, and had been battling for diagnosis and support in the same way that I had. In the last six months of her life, she had been entirely bedridden, and a small group of friends had been feeding, washing and otherwise caring for her. She had reached a point where she couldn’t keep fighting, and taken her own life.

I know of others with ME and similar conditions who for whatever reason weren’t able to fight any more, and are gone now. Not to mention the thousands who have died in the UK after being declared ‘fit for work’ by the Government. At the latest count, nearly 90 people a month were dying after failing disability assessments set up by private company Atos under contract to the Tory government. Hundreds of thousands of people are losing their mobility vehicles after being downgraded in these assessments, in many cases losing the thing that makes it possible for them to participate in community life, which is so important for human mental health.

And it seems to me that my experiences of everyday ableism and those shocking figures are linked. The UK Government’s current systematic oppression of disabled and ill people through its austerity measures (which have just been declared to be in breach of human rights by the UN) can take place only against a background of general disrespect and disregard for people with disabilities by abled people, just like the Government and mainstream media’s scapegoating of immigrants and poor people for the country’s economic problems can only happen against a background of racism and classism.

What it means to not keep my mouth shut any more

I don’t have the energy to be an activist who protests outside Parliament, but I can be an activist in my everyday life. I can challenge abled people when they act from their unconscious ableism, and I can tell abled people how to be allies (although everyone’s needs here are different, so my ideas are only one small part of the picture).

In a more general sense, I can remember every day that I am not the problem. I have worked really hard to accept that at some point, my body and brain transformed into something different from most people’s. I have grieved the loss of much of my able-bodied privilege and I’m now just getting on with my life as best I can. Daily, I deal with how best to get out of bed, wash and dress myself without using up all my energy and having to go back to bed again. I work very hard at managing my disability — if you want to get an idea of what that’s like, check out this famous article on Spoon Theory.

What I don’t have to accept and won’t any longer, is all the additional problems caused by able-bodied people who aren’t able to look at their privilege or do any work on being more inclusive and tolerant. I don’t have to be a ‘good ill person’ for fear of still further exclusion and erasure. I won’t do any of these things any longer:

  • Spend energy I can’t spare on educating abled people about ME and advocating for myself (always articulately and calmly, or I won’t be listened to) when my brain is barely working and my body is suffering;
  • Beg for understanding from able-bodied people and inclusion in able-bodied spaces;
  • Accept ableist attitudes and slurs as just my lot in life, making allowances for able-bodied people’s emotional states or personal struggles, telling myself it’s not their fault they don’t get it;
  • Accept the sense that I am inconvenience and an annoyance to able-bodied people when I can’t do the same things they do, at the same speed;
  • Take rejection due to lack of understanding about my disability without calling people on it;
  • Stay quiet when an abled person dismisses me when I speak about my disability because they can’t believe it could be ‘that bad’, or because they assume my symptoms equate to their own experiences.

And I suggest that you, able-bodied person, try doing these things below, if you want me in your life. And guess what? You probably do, if you can get over your prejudice. Because I’m pretty bloody great, and well worth having around.

How to be an ally to an invisibly disabled person

1. Don’t ablesplain — ever. When someone tells you about their experience as an invisibly disabled person, unless you also have that condition, you *don’t* know what it’s like. You *don’t* know how they should be managing it. You *don’t* have the authority to question their diagnosis or status as disabled. And no one asked you to fix it.

2. If you run an event or a venue, welcome accessibility requests — don’t act as though they are an annoyance or as though you’re doing the person a favour by trying to meet them. If you can’t meet those requests, be transparent and respectful when you explain why. Bear in mind this request and try to meet it in the future.

3. Again for event/venue organisers: don’t pay lip service to accessibility by providing a ‘concessionary’ rate that’s barely a reduction. For someone who is disabled and can’t work, and can’t afford an expensive event, a reduction of 10–20 per cent is a bit of an insult. It needs to be half price or less to really be accessible to someone on a very low income. If you need to ask to see evidence of disability or low income to justify that, fair enough. Truly accessible organisations offer a NOTAFLOF (no one turned away for lack of funds) policy.

4. Don’t assume that your personal difficulties can be neatly mapped onto the invisibly disabled person’s experiences and therefore that means you get it. For example, ‘ME tired’ is not the same as normal person tired. Saying ‘I get tired too’ to someone with ME is unbelievably insulting. Unless you have a disability or health condition that causes chronic fatigue, YOU DON’T KNOW TIRED, MY FRIEND.

5. Accept that you will make ableist mistakes. You can’t help it. It doesn’t make you a bad person. If someone raises an ableist mistake you’ve made, try to take it on board without getting defensive or invalidating the disabled person’s experience.

6. Do some research on someone’s disability or chronic health condition, rather than expecting them to educate you about it. They may be using all the spoons they have just on surviving — is it really fair to expect them to do all the work of explaining that to you too?

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