Kidney Cancer; One Year On

This time last year I was 32 and I had not long been told that, while doing a CT of my upper GI tract for stomach reasons, they’d found a mass on my right kidney. I told myself it would just be a cyst but after another CT scan focusing specially on it I was told otherwise. I instantly thought – it couldn’t be cancer could it? I looked up the numbers and they reassured me. Less than 2,400 women in my age range (30-34), in the UK get diagnosed with cancer each year. That’s a tiny number. Then only about 1% have kidney cancer and most of those are hereditary – and luckily for me kidney cancer doesn’t run in my family. As you can imagine I felt pretty okay about it all going forward. My main worry was that they’d be grumpy about wasting their time on nothing.Kidney cancer incidence in the UK 2012-14. Shows a higher incidence for men than women, mostly affecting those over 50.

Kidney cancer incidence in the UK 2012-14. Image from Cancer Research UK.

However, from the moment I got the post scan appointment to see a Urologist things seemed odd. There was only a month to wait between the second scan and the appointment. The Urologist was not based at my normal hospital. When I arrived for the appointment I rolled into the outpatients waiting area and before I could say anything a nurse called out “Hello! You must be Emma. The doctor is just finishing something but come sit down here where it’s more comfortable than this area. I’ll sit with you now and be there through the appointment – would you like a drink?”. That is not my usual experience of hospital outpatients. With hindsight I shouldn’t have been as shocked then, when they told me it wasn’t nothing. But no amount of hinting could have prepared me to hear it was kidney cancer.

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Leaving Abuse

[content note: this post covers my personal experiences with domestic abuse in some detail]

“Why don’t they just leave?”

“If someone did that to me I’d be out of there straight away!”

“If they were really being abused they’d run at the first chance!”

I’ve had all of these statements thrown at me and I’ve heard them applied to others living with domestic abuse. Aside from being generally unhelpful and blaming the victim for the abuse they are receiving, they are also based on a central faulty premise; that leaving domestic abuse is easy. For many of us that live(d) with it, it is exactly the opposite. It’s that difficulty that I’m going to discuss today.

To start with we have to remember a few things about domestic abuse; Continue reading

Making LARP More Accessible

I’m a massive nerd, I love Star Trek, I studied geology at uni, I love a chance to cosplay, and I love gaming of all sorts. One of the types of gaming I love is LARP (Live Action RolePlay). Murder Mystery events are LARPs, just never given that name. You play a character for the event, wear a costume, solve some puzzles, and mostly have a great bit of fun with others.

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A picture of me using my wheelchair at a Empire LARP. Photo courtesy of the talented Tom Garnett.

The ones I tend to attend focus on fantasy settings (magic & monsters), though futuristic, horror, survival, regency, and a whole host of other LARPs exist to choose from. They’re a great way to get away from the daily grind of living under an increasingly oppressive government regime of service cuts and poor access. The problem is that most LARPs are run by folk that consider themselves non-disabled, so all those access barriers we meet in day to day life can pop up there. I thought it might be an idea to list a few ways that we can work to minimise access issues and maximise fun in these environments: Continue reading

C-PTSD Flare, Stress & Compassion

I’ve been having a Complex PTSD flare, or EPCACE flare to go with the diagnosis on my medical records. Some new pills have managed to get the worst of the symptoms (somatic re-experiencing & full flashbacks) under control, which leaves me with some time to think about the other elements of the flare up.

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Respecting Intersecting Oppressions

We need to talk about intersections, or overlaps in disability activism. You’ll be used to me banging on about how feminist and queer spaces need to make room for disabled people. But this time I want to talk to disabled activists, campaigners and interested parties. We need to learn to tell the difference between asking people to remember disability, and shouting over important conversations.

We know that disability is often the last oppression picked by non-disabled people to think about. Partly because it’s not seen as sexy or current, partly they don’t want to think about us because it is hard on many levels, and partly because they don’t understand us outside of the medical & charity models of disability. It leaves many left leaning, socially aware people with the odd belief that disability activism is all about raising money to end various maladies. Of course while most of us are pro-medical research into conditions, we realise that the eradication of them as a method to eradicate disability is a nigh impossible thing to be aiming for (even with unethical things like eugenics being brought in). Especially given that it does precious little to help all of us in the mean time. Our struggles to achieve equality in basic areas, like daily living activities, being treated without disablist prejudice, accessing the law, accessing shops and residences, as well as benefiting from decent medical research and access to good quality healthcare (the social model).

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A Venn diagram showing how disability overlaps with race, sexuality, gender and nationality.

It’s really frustrating to see disability left out of conversations about oppression, and even more so when our attempts at starting a conversation fail because we end up preaching to the choir when non-disabled folk fail once more to either listen to us or interact with us. So, I totally understand the urge to shout “What about disabled people too!” into conversations about feminism, racism, sexuality, transphobia and so on. You know what, it’s important to remind people we exist, it’s important to remind people that in many cases of police mistreatment, domestic abuse, murder and so on the victim is disabled as well as having other identities.

It becomes a problem when our desire to do that ceases to be a desire to see disabled identities included, and becomes a desire to see the conversation be exclusively about disability. It’s one thing to add to an important conversation, it’s another to force a important conversation to stop so that we can talk about what we want to talk about. At that point it’s no longer intersectional, it’s only about disability. We have no right to demand that conversations around oppression include us, while we refuse to include others. No one wants to talk with people like that.

This is not supposed to be a tone argument, you can say it in any tone you please. This is more of a calling out of hypocrisy that is damaging to the cause.

The next bit might not be relevant for you, but if my point above wasn’t clear I’ve done an example to attempt to elaborate.

Example 1

(At a Black Lives Matter protest)

Protester: Black Lives Matter! Stop the police killing us!

Disabled Person: Lot’s of those people are disabled, as are white people they kill! It should be disabled lives matter instead. Disabled lives matter!

Example 2

(At a Black Lives Matter Protest)

Protester: Black Lives Matter! Stop the police killing us!

Disabled Person: Lot’s of those black people are also disabled, let’s remember that disabled black lives matter!

In Example 1 the disabled person starts by making a fair point, about the high incidences of disabled people killed by police/in police custody, but then completely ignores the fact that they are interrupting a conversation about racism and inappropriately brings up white people. Then they go a step further and try to erase the race element from the discourse by focusing solely on disabled peoples lives. It’s a dick move, and not a good way to win allies. In Example 2 the disabled person also raises the higher incidence of disabled peoples deaths, but focuses on disabled black people which is far more appropriate given that it is a Black Lives Matter Protest.

You don’t have to listen to me, you can ignore all that I’ve said, but I honestly think this is a better way to go about things.

Love to you wherever you are xx

Thoughts On Trauma, Setbacks & Recovery

I’ve been struggling to write so I’m trying to force myself to do so. This post & some that will follow will probably be of limited interest to many, and will involve a lot of navel gazing 😉

The simple act of living after experiencing trauma can be extraordinarily hard. Not all of the time, but for many of us the feelings of struggle hit in at least some of the time. Right now I am in that place and it’s painful, desperate, and scary.

I’ve had to come face to face with my own mortality far too many times in my life and each of those events gets tangled up with one another. Unfortunately it leaves me in a position where one of those threads of trauma getting pulled also pulls on the rest. My kidney cancer diagnosis has become one of those tangled threads and it’s something that gets pulled daily right now. The large wound around my side healing, the appointments, the questions, the uncertainty, it all keeps this and past incidents fresh in my mind. I am currently living in a world of flashbacks, lost time, dissociative ‘catatonia’, somatic re-experiencing, and the deepest mortal dread. It’s pretty shit to be honest.

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A picture with a straight arrow labelled Expectations, and a messy arrow labelled Reality.

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Body Positivity & Disability

The body positivity movement is an extension of the fat acceptance movement, but designed to be more inclusive to all body types. The goal of working towards loving your body for what it is, rather than what it is not, is laudable and a state of being I would love to achieve for myself one day. It sounds like a really useful arena for visibly disabled people to counter the negative looks and comments that come with it and also a really useful tool for every person living with chronic health conditions that cause pain, fatigue, discomfort, and other often unwanted and unpleasant effects.

Sadly the movement is based in an unequal world, and is therefore shaped by people who often have internalised disablism, sexism, racism, and a whole host of other issues too. It unintentionally forms barriers to disabled people and I want to take a few minutes to talk about them. Continue reading

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