Incurable

I am chronically ill. My chronic illnesses cause me to be seriously disabled. And a word I have to use a lot to describe my state of illness is “incurable”.

It’s a word that I have grown comfortable saying. Yet it doesn’t seem to be a word that friends and acquaintances are able to comfortably hear me use about my own illness. Oddly, as I discussed before about the fact that I will likely never recover the ability to walk unaided, it seems to be the acquaintances more than the friends who have a hard time hearing and accepting the reality of “incurable”. And if people would keep their discomfort inside their own heads, that’d be fine. They just have an annoying tendency of saying things that make clear that they feel that *their* discomfort is somehow *my* problem.
And it’s not.

So here’s a post about what “incurable” means. Starting with what it DOESN’T mean.

When I say my illness is “incurable”, I DON’T mean, “I’ve stopped trying to get better, convince me not to give up hope”.
When I say my illness is “incurable”, I DON’T mean, “Please suggest a treatment you may have heard about your friend’s Uncle’s step-daughter using for an illness that may or may not be similar to any of mine”.
When I say my illness is “incurable”, I DON’T mean, “Please argue with me about whether or not I have the correct diagnoses”.
When I say my illness is “incurable”, I DON’T mean, “Insist that I have misunderstood and my illness can’t possibly be incurable”.
When I say my illness is “incurable”, I DON’T mean, “Tell me, after doing not even 10% of the research that I have done into the current medical science behind my own illness(es) that a cure simply MUST be being developed and/or will be available within the next decade or so”.
When I say my illness is “incurable”, I DON’T mean, “Repeatedly ask me if I’m really definitely sure that my illness is incurable”.
When I say my illness is “incurable”, I DON’T mean, “Now you should question me on how many treatments I’ve tried and why I haven’t tried x, y,or done p, q, r *just in case* “.
When I say my illness is “incurable”, I DON’T mean, “I need you to help me be more positive! If only I were positive enough, I’d spontaneously stop being ill!”

When I say my illness is “incurable”, I DO mean, “I am, in all likelihood, going to be ill for the rest of my life. I’m telling you this so you can understand that there is no “when I’m well again” for you to plan to do that thing with me – if it’s going to happen, I’ll be doing it while ill”.
When I say my illness is “incurable”, I DO mean, “I’ve looked into the current medical research on my conditions and I’ve looked at the *pace* of medical research into chronic illnesses and it looks really unlikely that anything resembling a cure for my illness will be developed, tested, declared safe and made available on the NHS within my lifetime so I will probably be ill for the rest of my life”
When I say my illness is “incurable”, I DO mean, “The available treatments for my illness deal with symptoms and not root causes. I am going to be taking medication for the rest of my life”
When I say my illness is “incurable”, I DO mean, “I understand and accept the reality of my chronic illness and it’s be easier for everyone if I am straight-forward and realistic about the fact that I will be ill for the rest of my life”
When I say my illness is “incurable”, I DO mean, “You are expressing unrealistic thoughts and wishes about my body and future and I am trying to gently but firmly dismiss them. There is a word for illness that will not and cannot get better and I am using it”.

I have to live the rest of my life knowing that I will be ill for pretty much every second of the rest of my (likely normal!) life-span. I have to be okay with that. I won’t ask you to feel okay about it but I will make sure you have to KNOW it too. I won’t pretend not to be ill for you and I won’t pretend for you that I won’t be ill tomorrow as well. No doubt that pretence would make many people far more comfortable around me but it’d be a lie. When I say “I have incurable chronic pain and fatigue”, I am trying to tell you as swiftly and kindly as possible that I will always be ill. And that there’s no pretending otherwise.

I Still Matter

It’s not easy, standing up to your friends. But I feel that I have to. My friends and fellow fighters of the left, of the disabled people’s movement, the intersectional feminists, the anarchists and all those fed up of cuts, a choice of any political party you like as long it’s neoliberal and poverty for the masses. Everyone seeking justice in this broken country… we’re friends (if sometimes a bit grudgingly) and I need to stand up to you.

I need to stand up and say: I have never been employed, I will likely spend my entire life living off social security andI STILL MATTER.

And I feel like I don’t. Because a lot of you are sure acting like I don’t matter. Over and over and over and over I’m seeing a narrative of disabled benefit claimants that begins with how many years someone was employed before they became ill. And how long they kept going working themselves iller and iller doing part time work and not claiming benefits. And how ashamed they were to need to claim benefits at all. And at least one mention of how they paid taxes all their working life. This is almost always the beginning of the story. This is how over and over and over we are choosing to tell our stories and how over andover others are framing our stories for us.
Always the emphasis on how hard we worked “before”, how ashamed we are and how we desperately wish we could get a job, any job, to make our lives mean something again.

NO NO NO NO NO.

This is fast becoming the “acceptable narrative” of disability and it shouldn’t be. It makes people like me (and there are thousands like me) feel invisible and like we don’t matter. And it leaves the right-wing ideas of (employed) work as an inherent good and the source of all personal worth and meaning intact. It lets us be split into “deserving” and “undeserving” crips, with those like me who didn’t have the foresight to get in a few decades of employment before becoming seriously ill (my illnesses hit me when I was 22) not really deserving to be given money to live off while those who worked themselves past the point where they were well enough to and claimed their benefits with reluctance and shame deserve theirs. I know it’s far more messy and complex and human than that. So do you. Yet the stories that are being pushed and getting coverage, getting shared widely… are all the same. Someone worthy of benefits because they worked hard for decades and/or became disabled while doing a very dangerous job. Someone who says (or can be misconstrued to say) that they did everything they could to keep working and not apply for disabled people’s benefits *that they knew they were entitled to* until there was no other choice.

I matter even though every single hour of work I’ve done was voluntary and unpaid. I matter even though the amount of unpaid work I do has massively reduced as dealing with chronic illness has taken over my life. I matter in the weeks where I do no work at all. I matter even if I never get paid for work in my life and even if the only income I ever have is from benefits.
I matter no matter what I spend my poverty money on – no matter who would or wouldn’t approve.
I matter even though I see no shame in where my money comes from.
I matter even though I’m a young adult. I matter even though my illnesses are misunderstood.
I matter even though I’m mentally ill.

I matter. I matter. I do.

My story of being a disabled mentally ill teen who became chronically physically ill and even more mentally ill while at University is far, far from unique. My relative lack of shame about claiming the social security available to me is not rare and is – and has to be – perfectly reasonable and acceptable. My story has to become an “acceptable” narrative too or we’re playing right into the hands of the right-wingers and neo-liberals who want to measure human worth in hours of paid employment.

If you’ve worked – whether for money or not – for decades and then become ill or disabled, then you matter and your story matters. As long as me and my story get to matter too.

Dressing While Disabled (for BADD)

It’s Blogging Against Disablism Day again, a blog carnival hosted by my lovely friends Goldfish and Mr Goldfish. As ever, I’ve been completely thrown off by discovering (once again) that April has 30 days and not 31 and that April is followed by May. Because of the particular ways my learning difficulties interact, these two facts surprise me anew every year and so every year BADD arrives before I’ve decided what to write about for it. A huge proportion of my blog is already dedicated to being “Against Disablism”, of course, as this blog is about my experiences of living with multiple disabling conditions and illnesses in a society (Tory-run Britain) that doesn’t think well of people who can’t work. I’ve written before about benefits, the assessments needed to get them, social care and the disaster zone one must survive to get it. So what am I going to write about today? Clothes. Yep, clothes. With remarkably few exceptions, we all wear clothes. It seems far far too obvious to point out but: disabled people wear clothes too. We have the same range of feelings about clothes as anyone else – from necessary evil through to beloved means of self-expression. What we *don’t* have the same as everyone else is options. we also have a whole host of additional considerations and complications beyond “Does this look good on me?” There are fabrics and cuts and styles I cannot wear because my skin would erupt in pain – and that would include most school uniforms, most business suits and most formal wear. Think of all the places I will never appear to “belong” because I cannot wear the “right” clothes. I and many of my friends need special shoes – I need to have velcro instead of laces and room for orthotics – which again can make us look “out of place”. I can’t wear skinny jeans or skin-tight tops – which sometimes means men I’m trying to flirt with assume I’m straight because I don’t (and can’t) fit a certain image used by many to indicate their sexuality. As well as textures, I have to consider the fastenings. Could I get this or that item on and off by myself if I had to? Is it worth the risk getting something gorgeous that I can’t get myself out of? What about durability? Will any given item of clothing stand up to being worn for days on end? Or being washed over and over as I spill food and drink on myself? Can it stand being slept in from time to time? Can these jeans or trousers put up with frequent falls and with shuffling around on the floor when I can’t get myself up? My friends have to ask themselves whether jackets, sleeves or trousers could get caught in wheels, how will long open sleeves interact with crutches? And more often than any of those questions, disabled people all over the world are asking “But does that come in my size?” We are often fat or short or lopsided. We have limbs that are long or short compared to the rest of us, we have heads that are unusually large or small. Getting things adapted costs. Getting “special” clothes for people with bodies like ours costs too – and a quick browse of clothes designed for wheelchair users and for adults with Down Syndrome is uninspiring. We have fewer options in what we wear and getting to wear what we’d like to is impossible or costly. Why is this a problem? It’s a problem because clothes are used to communicate to others “who we are” and our clothing choices are used by others to make snap second judgements about us. And disabled people, particularly but not exclusively those of us with physical and motor difficulties and those of us with developmental disabilities, have fewer choices to choose from. It’s like we’ve been given a paintbox with red, green and yellow missing and then are looked down on for painting with mainly blue, brown and grey. What clothes we can wear affects what spaces and roles we can be in *and be seen to be in*. What clothes we can wear affects what kinds of people we can be *and be seen to be*. When all the affordable clothes that fit you are children’s clothes, will people see you and treat you as an adult? When all the affordable clothes that you can wear are shapeless, what might people think of you? When everyone you know with the same developmental disability as you have identical wardrobes, how can you remind people you aren’t interchangeable?

Some of us are even denied any choice in what we wear, with caregivers deciding that for us. Some of us can’t decide what to wear because we’re too sick and/or depressed to care. Some of us have never been shopping for clothes because the effort involved is too much or too scary.
Some of us know what image we want to portray but can’t because other people see our mobility aids or our short stature or our assistance dog or the space where they expect to see a limb or facial feature that we don’t have and then they forget to see the rest of us. They don’t see the sequins behind the white cane, the tattoos covering our single arm, the leather collar and studded black clothing of the guy with the wheeled walker (that one is me). Disability is so degendered and desexed that any visible sign of disability – be that equipment or impairment-specific body language – can undo any attempt to present as an adult, gendered, sexual human being. And I don’t really have a solution. But I wanted to say it: there is a problem. Structural disablism is denying us access to a full palette of clothing styles and then often ignoring or discounting any attempts at self-expression we do make. It’s not okay, I don’t know how to fix it but it’s happening.