Why I’m Blunt

Or “Why I talk about my illness and disability so much and why I don’t talk about what my life would be like if I were well”.

I am very straightforward about being ill and how it affects me. I openly discuss diagnoses, symptoms and treatments with friends and I write about my illness a lot on here. Through the number of times my posts on chronic illness are being shared and the comments and commentary I see on and around my posts, I know that what I say here reflects the experiences of other chronically ill people. That recognition of shared experience feels important to me; we are a scattered community and many of us are alone or isolated in some way in offline life.

It’s in my offline life that I am sometimes accused of being “blunt” and I guess I am. Almost all of the time, I don’t pretend I’m okay when I’m not. I can hide a great deal of pain but I won’t deny it if I’m asked how I am. My stick (or wheeled walker) and my gait and other visible signs of disability I don’t hide. When people are getting to know me, one of the first things I make sure to tell them is that I have an incurable chronic pain and fatigue problem and that means I can’t really do x, y, z things and I might need some assistance with p, q, r things. I know I could just say “I can’t do this” and “I need some help with this” but it feels important to me to get the “incurable, lifelong pain and fatigue” said and understood. People don’t like hearing it and don’t know how to react and I can sympathise with that. But I need the people around me to have realistic expectations of what I can do and what my life is going to be like and getting “There’s no cure” and “I am in pain” heard and understood early on stops awkward conversations later on.

The other reason I’m so very blunt here and everywhere about how ill I am and how it’s incurable is, well… it’s a mental defense strategy. I *have to* be okay with being ill, I *have to* make myself comfortable with the knowledge that this is normal now – the alternative is spending my life grieving for a future that never happened, the life I could be living. It’s not that I don’t think about it sometimes, I do. It’s more that my mental energy is better directed at thinking up possible futures for myself *that I actually have half a chance of making happen*. There’s a lot that I can still do, a lot to work towards. I have no choice but to be okay with having all my plans and dreams from “before” fade into nothing and replaced with plans that centre what’s really important to me.

And so I’m blunt with others. To shut those “But what if you get better / if there is a cure / if you try this snake oil?” conversations down instantly. To practice being okay with the word “incurable”. To hand part of the discomfort our society has with illness and ill people to the other person to carry so I don’t have to deal with it.

To make myself into someone who accepts that his reality is real and okay, someone willing to work with what’s he’s got, someone grounded in the reality of his body with all its needs and capacities and limitations.

That’s why I don’t talk about what it would be like to be well. Imagining wellness for myself means imagine something my doctors have told me is virtually impossible. I don’t want to get emotionally invested in an idea of what my life could(n’t really) be because I don’t want to deal with the inevitable frustration and disappointment of never being able to achieve it.

I’m blunt because I’m honest. With myself and with you. Illness is my reality and it’s likely to be my future. I won’t sugar-coat that for any adult person. I’ll be honest and clear and my voice will not tremble or break when I say that this illness is life-long and disabling. I have to live with that. If you want to be part of my life in any way, you have to live with it too.

Addendum: above is entirely about my personal experiences, if you think it’s about you it maybe is but it’s also about dozens of other people. “There is no cure” is a sentence I have actually heard spoken to me by actual doctors, as are the words “incurable”, “chronic” and “progressive”. If you suggest I could “get better” you won’t be the first but you’ll still be wrong.

In-between

I’ve got a few spare minutes so I thought I’d write a quick post for Blogging Against Disablism Day 2014. There are other posts I want to write about disability, gender and fashion, about internalised disablism and about the questions strangers ask me when they notice that I am a disabled person. Those can wait.

Today I have only a few minutes and one very precise thing I want to write about. And that’s the difference between how people who aren’t disabled seem to conceive of disability and what being disabled is actually like.

Other people seem to think that for any and all “abilities” people can either do them or they can’t. So either you can walk perfectly well or you can’t walk at all. You can either talk or you can’t. You can either see properly or see nothing, you’re either hearing or profoundly Deaf. You’re permanently on the edge of seriously harming yourself or you’re completely fine. You can be easily sorted within seconds into “disabled and thus completely unable to do anything” or “perfectly capable of doing any kind of work without any real difficulty”.

A LOT of disablism seems to rest on this idea which looks very obviously absurd to anyone with any direct experience of being or living with a disabled person yet this idea seems to me to be widespread. Even the draconian implementation of the Work Capacity Assessment here in the UK seems based on this strange dichotomy of “you can either always do something or always not” and “you’re either fit for all kinds of work or none at all”. When people call the fraud hotline because they’ve seen a neighbour walk from their car to their door when they use a wheelchair or scooter to get to the corner shop, their disablism is based in the idea that people can either walk or they can’t and that anyone who can walk can work (btw, if you find me a job that literally only involves walking short distances a few times a day, message me :P).

The reality of disabled life is very different. There is no neat split between “Things I can always do” and “Things I can never do” – almost everything is inbetween. Almost everything is something I can do sometimes under some conditions. Some days I might be able to walk half a mile using a walking stick, other days I literally cannot get out of bed. Under the right conditions and with appropriate supervision, I can cook a meal for six people from scratch. Most days however, I need another person to come in and cook for me. I’m happy and confident and I love my life *and also I’m very mentally ill and in serious danger of neglecting and/or harming myself*. These are not contradictions. This is my reality and that of thousands of other people.

Disablism seeks to reduce me to a list of things that I always cannot do (and there are plenty) and proclaim me able to do many things on the basis of my ability to do them once or twice a year. The reality is more complex and diverse than that. I live in the space in between “can” and “can’t” and if non-disabled people ever really thought about it they’d realise that *they do too*.

Blogging Against Disablism!

So, it’s going to be Blogging Against Disablism Day 2014 in a couple of weeks. On the same day as my Important University Essay Deadline, May 1st.

I don’t know if I’ll be able to both write something for BADD *and* do my essay and I’m prioritising my essay. HOWEVER, I know that some years I didn’t participate in BADD because I didn’t have a blog or because I wanted to say something anonymously and didn’t have somewhere i could do that. Some years, other people kindly allowed me to post on their blogs so this year I’m offering to do the same.

If you’ve got something to say against any aspect of disablism (prejudice and discrimination against disabled people) from the perspective of any kind of disability, from anywhere in the world and you don’t have a blog to say it on, I offer you here. Message me through my contact page or on twitter *before* the first of May and I’ll try to set your words to be guest-posted on yetanotherlefty on the 1st of May.

BADD – People don’t listen

If you’ve read my blog much or know me in real life, you’ll have gathered that I differ significantly from some platonic template of “Humanity” in a number of socially undervalued / undesirable ways – which is to say that I’m disabled.Humans are all really quite different from each other and we all accept that – but some differences are seen as deficiencies, as problems, as wrongness. Part of the social model of disability is the idea that it was never set in stone which differences would be considered just differences and which would be considered problems. More excitingly, it still isn’t set in stone. Some “problems” can cease to be problems.

My body and my brain deviate from “standard issue” quite a bit. Increasingly, in fact. I have never been and never will be what is currently understood to be “normal”. For the most part, I’m okay with that.

Other people aren’t. They won’t all admit it but a lot of people seem to find people like me – disabled people – pretty disturbing. How do I know this when most other adults won’t straight up call me freak or cripple? I know this by people’s reactions when I talk about my impairments (i.e. the differences about my brain and body that my society considers to be deviations and problems).

When I talk about my autism, dyspraxia and dyslexia, I tend to be fairly upbeat and straightfoward. I like my brain, I’m used to how it works, I am in many ways a master of using it to learn and I know how to turn my differences into advantages. Whilst I wish there’d been more support for me when I was a child, for the most part I enjoy my neurodiverse brain and I get on well with it despite the difficulties I have navigating a world that wasn’t really designed to accommodate people with brains like mine.
When other people hear about my autism, dyslexia and/or dyspraxia, they say things like “I’m so sorry” or “That must be really terrible for you”. They use words like “suffers” to describe my life with my brain and they tell me I’m “really brave” and “an inspiration” for getting a degree. Basically, they treat my life long learning differences as though they are inherently and always a bad thing. They talk over me and instead of listening to how I feel, they end up telling me how they feel and how they think I ought to feel.
They are scared and sad and confused. They don’t want a brain like mine so they imagine I don’t want it either. But I like my brain and it would be scary and sad and confusing for me to contemplate having a brain like theirs instead.

When I talk about my chronic illness and the physical limitations and pain and tiredness that go along with it, I still expect people to agree with me that chronic illness is awful and to be sympathetic. This isn’t usually what actually happens.
When I talk about my chronic illness, I talk about constant wide spread pain, persistent exhaustion, unfulfilling sleep that nontheless takes up 11 or 12 hours of my day. I talk about the sadness of seeing my ability to walk slowly fade away, the fear that words like “incurable” and “progressive” fill me with, the grief of having to contemplate that I will likely never walk without mobility aids again. I talk about not having enough energy to walk to and from the campus shop, of having to cancel plans with friends because I’m in too much pain to get out of bed. Frankly, I talk about how this is my lot in life and G-d seems to be taking the fucking piss by giving me all this to learn to live with.
People nod and look concerned and then tell me I need to exercise more. Or eat more fruit. That a “strapping young man” like me should be off playing football. That I should get out more or see more people. They suggest alternative therapies and guilt-trip me later for not trying them. They suggest the “obvious” healthy living advice (more exercise, better food, positive thinking) as if I wouldn’t have tried that first. They tell me to look on the bright side, they insist without evidence that a cure will be found soon, they outright tell me I could walk fine if I just tried harder. Again, people talk over me but this time it’s to minimise my experience, to make it sound less painful, less awful and more easy to fix. They never tell me I’m still valuable even if I can’t work, they tell me I’ll soon be able to work. They don’t tell me “That sounds really difficult to live with” they just insist that things will get better soon.

When I talk out my mental health problems, people don’t even know what to say.

All I can gather from this, years’ worth of evidence from countless conversations is that people have their own ideas about disability and illness and they’d rather believe them than listen to my actual experience. They’d rather believe that learning difficulties are awful and tragic than accept that I love my brain and they’d rather believe that chronic illnesses are temporary, easily cured and never affect the young than listen and help me with the grief that is forming part of my process of adapting.

I want to end on a positive note so I’d just like to say thank you to everyone who has ever listened to and accepted my own thoughts and feelings about my experiences of my impairments. You’re rarer than you should be and you make me feel like a real and valid person. Thank you.