Getting up is hard to do

Here's a fun fact about me: every morning, without fail, I will wake up to find that one or both of my shoulders has partially dislocated.

When I tell someone this for the first time, I tend to experience one of three reactions. There's grim recognition from fellow bendy people; horror and wincing from my able-bodied friends; and a confused look of "I thought that was normal" from people I then advise to ask for a rheumatology referral from their GP.

The idea that not everyone wakes up in a certain amount of pain is a relatively new one for me. Because it's been happening to me for at least nine years, I'd assumed that this was normal for everyone to some degree - that everyone woke up and had to immediately readjust their shoulders, hips, and several vertebrae. Imagine my shock when I found out that some people can just roll out of bed and get on with their day!

I had long imagined that the world was divided into Morning People and Night Owls, and that the two would never understand each other. I thought that morning people probably practised some form of black magic, because mornings for me are impossible. To begin with, I can't remember the last time I slept through the night and woke up feeling refreshed. Between physical pain and the chronic anxiety that tends to soak into my dreaming subconscious, I wake up every few hours, gaze despairingly at the clock, and hope vainly that the next time I look at it will be when my alarm goes off. When my alarm does sound, I will very often fall asleep again the moment I press the off switch, because I'm still exhausted.

Once I eventually wake up, which can be up to four or five hours later if it's been a really bad night, I have a brief and blessed window before the pain kicks in. I'll spend about ten minutes gingerly testing all my various joints and limbs to see what's fallen out, and stretching any painful muscles, and then I'll try to get out of bed. This can take several attempts, because often my hips will pop out as I move to put my feet on the floor, or I'll see stars as I straighten up and have to sit or lie down again. The whole process of getting out of bed generally takes upwards of 45 minutes, and it's very difficult to accurately factor it into my plans for the day.

As an added bonus, it can take up to two hours after getting up before I can keep any food down. And I can't string a coherent sentence together until I've had two cups of tea, but I'm given to understand this is a rather more common experience.

So next time someone tells you they're not a morning person, hang onto your comments. They might just be a bit slow to start, but they might equally be going through something like this.

We Can't March

As an indeterminate number of protesters took to the streets on May 9th (the precise figure apparently depends on how right-wing the paper you're reading is), disabled activists took to Twitter under the hashtag #WeCantMarch to make their voices heard. The hashtag was started by Twitter user @hnahhnah, who is organising further actions with other activists, and others.

Tory austerity measures have been particularly harsh on vulnerable groups, with disabled people bearing the brunt of an onslaught of cuts to social welfare. It's harder than ever for many of us to access the financial support we need in order to survive. Those of us who have suffered - some disproportionately - under the Conservative-led government may want to show our opposition in some way, but the standard method of attending rallies is inaccessible to many of us for all sorts of reasons.

How does EDS prevent me, personally, from attending marches?

- I can't walk the kinds of distances usually covered by protest rallies.

- I can't remain on my feet for longer than about 10 minutes without severe pain.
- Were I to use a wheelchair on a march, I would risk being tipped out of it.

- If I am kettled, I will not be allowed to take the measures - sitting, lying down, stretching - that will keep my pain levels at least bearable.

- If I fall while marching I am at disproportionate risk of injury, either by being trampled or by being helped to my feet (thanks to joint laxity in my elbows, wrists, and shoulders).

- If I am arrested, I risk injury when being manhandled by police and may be denied access to essential medication. This might sound like an exaggeration, but it's happened to a lot of people.

- If I am injured in a kettle, I may be denied access to medical treatment.

- Large crowds carry a disproportionate risk of personal injury and excessive amounts of stimulus, which in turn gives me panic attacks.

- If I do attend a march and nothing bad happens, it will still take me at least two days to recover to the point where I can do basic daily tasks again.

Does this mean people with EDS and other disabilities should be locked out of protest, when austerity measures are causing us so much suffering? Of course not. And this is why #WeCantMarch is so important. We can't march, but we can organise. We can help produce information pamphlets and make signs. We can provide food and water for protesters, and catering for after marches. We can provide telephone and Internet based support to arrestees. We can lobby the media to provide honest, unbiased, and accurate coverage of rallies. We can boost your voices while adding our own. The hashtag lists a wealth of other ways in which we can support people at rallies 

I have these words on this page. I cannot march, but I can still shout. Let me in. If you're organising, take some time to think about how you can include people who can't march - not just people with disabilities, but people who are at greater risk of violence (such as ethnic minorities, immigrants awaiting asylum decisions, and people who are visibly queer or trans), and people who can't afford to travel to major cities, and people whose caring obligations or professions take priority over risking arrest, and countless others too.

We'll be over here, organising and doing what we can. Join us, and let us join you.

Recommended reading:
Caroline Lucas writes in the Independent about the likely impact of cuts to the Independent Living Fund.
[Trigger warning - suicide] Investigations of suicides linked to benefit sanctions are ongoing.
Report on the case of David Clapson, who was found dead in his home after benefits sanctions.
[Trigger warning - suicide] Black Triangle lists benefit claimants who died after sanctions between February and October 2014.

I welcome suggestions for other resources, particularly on barriers to protest for people who are nondisabled but belong to other vulnerable groups. Comment, or tweet me @theviciouspixie, and let's get a conversation going.

On Anger

[Content warning: this article contains references to depression, anxiety, and self-harm.]

Sometimes I will make little quips about how angry I get. They vary, but the gist of them tends to be the same: I have to be angry, or I will just stop. I say it with a smile and a shake of the head, but it's not a joke. Not really. My anger powers me. If I wasn't angry, I don't know what or how I'd be.

Anger is an energy. Sometimes this energy manifests in me another way. I have a lot of feelings, and I feel them strongly. They could be excitement, or joy, or crushing depression, or unbearable anxiety, or something else entirely, but they are coins. If you turn them over, anger is most often the queen's head you'll find underneath.

I don't know when it started. My parents insist I was a happy child, though that's not what I remember at all. All through school I was an outsider, and it didn't take long for my misery at this to turn into resentment, which turned into rage. It was worst when I was a teenager - a simmering pot of sadness and fury that could bubble over at the slightest provocation.

Back then, and for a long time afterwards, I would send my anger outwards and hurt the people close to me, or I would turn it inwards and hurt myself. With the benefit of life experience (and no small amount of psychotherapy), I have gradually learned that it's best to express it - to channel it in ways where it targets no-one, but floats into the atmosphere and disappears. That, for me, is the only way to deal with it without harming anyone. If I keep it inside, it becomes depression and anxiety and threatens to explode out of me, burning anyone it touches.

So I talk, and I write. Sometimes I'll turn it into acerbic wit, and sometimes I'll leave it as it is, incandescent and untouchable. Bright flames are hard to look at, I know. Many people accept my anger happily. Some even love it. But other people tell me that it's too much - that I feel too much and they cannot bear it.

That's what they tell me, anyway. What they mean is that I say too much, and they will not tolerate it.

Often it is to do with the things I am angry about. Usually, it's some form of injustice. I hesitate to call myself an activist - I feel this term makes my actions sound more meaningful than they are - but I talk freely and openly about the injustice I have experienced, and I freely and openly express how much I deplore injustice against others. I am not one to mince my words. I swear, I use strong phrases, and I avoid euphemism. Some people find this intimidating. Some simply find it objectionable - often, I suspect, because they perceive me as a woman, and women should not be as strident and forthright as I am. Women should bear injustice against themselves with good grace, and be calm and measured in their defence of others. Emotion is weakness. Robotic logic is strength.

Fuck that.

If I become aware that I am harming someone, I will stop and moderate my tone, because the entire reason why I express my anger the way I do is to stop it from hurting anyone. But if it is the strength or the existence of my feeling that offends you - if your eyes are sore from staring at the fire - then I have nothing further to do or to say for you. My feelings are mine. They are valid, and a lot of the time they are worth hearing. By silencing me, you are telling me that your comfort is more important than my well-being, and I will not stand for that. Not any more.

My voice is my healing, and I will wear my words like armour to protect myself and the people I love most. You will not buy your comfort with my silence.