On Cancer & Chronic Illness

Heya! It’s been a weird year for me, loads of stuff, a lot of it crippling anxiety and a complete loss of motivation, has prevented me from blogging. I’m sorry about that.

As you probably know, I’ve been dealing with chronic health problems for years now; chronic pain, vomiting, nerve damage, gastrointestinal damage, and joint hypermobility. I developed a hiatus hernia in September which was having some pretty severe side effects, so I had an abdominal CT scan at the start of this year. It didn’t just find the hernia, but it also found a shadow on my right kidney. I had a more detailed scan in March, and in April a very nice Urologist and a Macmillan nurse told me the mass was solid, and most likely cancerous (over 90% chance), otherwise it would be precancerous with a very high chance of becoming cancer in the future. They tabled surgery within 4 weeks, and got it out. I’m currently recovering after having a open partial nephrectomy and getting the 21 staples removed this morning.

I’ve been thinking about the ways in which cancer is treated differently to other chronic illnesses, many of which also have pretty depressing prognosis’s; Continue reading

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What if Mental Health Was Treated The Way Physical Conditions Are?

If you’ve lived with a mental health condition then you’ve probably noticed people often say unhelpful things like “Time to move on & get over it” or “You don’t seem that sick” or “It’s just in your head”. You’ve probably thought to yourself, “No one is that mean to people with broken legs or food poisoning” and either wished they’d take you more seriously/fallen into a tasty vengeance fantasy/felt even worse than you did before. There is a good chance you’ve been shown this webcomic by Robot Hugs, often with this header attached, and nodded along:

A comic strip from Robot Hugs captures the differences between the way we treat physical health problems and mental illnesses.

I can see why you are nodding along, I’ve been there myself. People can be extremely hurtful when your problems are often invisible to the naked eye. The thing is, I really think this is the wrong way to go. In fact, I think it’s harmful and, comes from a position of privilage. “Why!?” I hear you cry. “This articulates the struggle many of us live with daily! How is that a problem?”. Well, I shall explain. Continue reading

At The Intersection: Down’s Syndrome & Abortion

Picture of a girl with Down’s Syndrome

There has been a lot said over the past 48 hours about Downs Syndrome, prenatal screening and abortion thanks in large part to some tweets sent out by Richard Dawkins:

Whilst many of us naturally baulk at such words we must remember that in the UK prenatal screening for Down’s Syndrome is common place. With an overwhelming majority of the people who are told they are pregnant with a foetus with Down’s Syndrome choosing to terminate and many will then go on to try again. This is something that is worthy of discussion. It doesn’t take much research to realise that many people with Down’s Syndrome live perfectly healthy & happy lives. So why do so many make the choice to terminate? Continue reading

Can We Stop Pitting Visible Against Invisible Disabilities?

Seriously.

Today I read another post about how people with visible disabilities have it so much easier than over those with invisible disabilities. I have, in my time, also read posts about how people with invisible disabilities are have an easier time than those with visible disabilities.

Who is this helping? No one.

It’s one thing to raise awareness of the different challenges that arise from the wide array of impairments disabled people have. It’s another to wallow in “who, in this group of people who are all oppressed by a disablist society, has it worst” .

Passing as non-disabled (having an invisible disability) means you probably don’t get the constant stares in the street stemming from your impairment, the “what’s wrong with you?” questions from people you’ve never met when you are just trying to eat a sandwich in a park, the constant pressure to become a paralympian, random people telling you that you are cursed/are being punished for past life transgressions whilst you are window shopping (and that they can fix it if you give the £250), you probably have never been in a situation where two small steps have meant you can’t physically enter a building or experienced the bus-buggy-war first hand and you probably haven’t had people assume you can’t communicate for yourself on a regular basis. But it also means you have to deal with other problems arising from a lack of visibility. Such as constantly running up against people who don’t/won’t believe your impairment is disabling (because if it was you’d have a wheelchair), being told off for using accessible toilets or parking spaces, having your own bus-war when it comes to using the priority seats and a whole lot more that comes from living in a world where people think disabled people look like “x” and anyone else is either non-disabled or non-disabled and lazy/on the scrounge/attention seeking. Continue reading

One Survivors Perspective on Trigger Warnings

We all hear a lot about Trigger Warnings, love them or loathe them everybody’s got a view and I’m no exception so here is my take on them.

As you may or may not know I’ve got complicated PTSD. I’ve experienced quite a few traumatic experiences in my life (which will get some passing mentions in this), from being severely burned to being trapped in an extremely violent relationship where over 5 years rape, sexual assault and attempts to kill eventually became almost everyday experiences. When I talk about being triggered I’m normally talking about flashbacks. These situations lead to me physically, mentally and emotionally re-experiencing traumatic events the way I did when it occurred. I’m not sure if any of you have been burned neck to ankle but I can assure you it is excruciating. It’s the kind of pain that you hope you’ll only ever experience once in a lifetime, not every time you watch an action movie with a lot of fire effects in it (pro tip: that’s nearly every one). Sometimes I also use the word triggered to describe the non-flashback effects that happen when I disassociate from the traumatic memory; behaviorally I might completely shut down for 30 seconds to an hour, unable to speak or think, or I might be hit with a sudden wave of mortal terror or righteous anger as my fight or flight responses kick in. In short, getting triggered sucks for me and for those around me. Continue reading

BADD 2014 – Nothing About Us Without Us?

It’s Blogging Against Disablisim Day!

There are loads of topics I could talk about today to illustrate disablisim, from the day to day grind of small & institutionalised oppressions to the cases where disablism ends lives. This year however I want to talk a little bit about internalised disablism that exisits within many, if not most disabled people. This is only a very quick post on a subject that could easily become a 10,000 word essay but hopefully it will give a few people something to think about.

When we think institutional disablism we think of classic cases which involve non-disabled people not thinking about/not caring about whether or not something is accessible. Be it because of steps, lack of suitable communication or allowing a atmosphere of exclusion to exist.

We don’t tend to spend much time looking at disablism many of us have picked up over the years and how it can effect our interactions with other disabled people – and it can effect those interactions. We really can be part of the problem.

I’m not saying it’s intentional, or that we are morally vacant monsters. As we are growing up we learn how to relate to different people by watching how others do it in the world around us and then we start to mimic the socially acceptable ones. We too are fed the same steady diet of media-bias, mis-information and unhelpful stereotypes as non-disabled people. We’ve all grown up in a disablist society. It’s hardly surprising then that some of them stick with us! I think it’s no great surprise that some of the best heard/most listened to voices in disability activism come from wheelchair users rather than people with cognitive or learning disabilities.

Certain kinds of disability are frequently left out of or marginalised within the conversation:

  • Severe Learning Disabilities
  • Developmental Disabilities
  • Congenital Disabilities
  • Cognitive Disabilities (including Dementia, one of the fast growing causes of disability in the UK)

It’s no coincidence that one of the most disabling aspects of these conditions is the ability to communicate the way that non-disabled people do. It makes it even more vital that we work to include these voices in our work if we want to make it stronger. I hear and read comments from wheelchair users about how they don’t want to be confused for wheelchair users with cognitive disabilities because it’s insulting. Isn’t it a sure fire sign that disablism is alive and well when we don’t want to be thought of as a disabled person? I watch as bright, interesting people who use communication aids are sidelined “because no one wants to listen to a computer”. We (disabled people) are not immune to taking the “easier” option of talking to a PA instead or talking in a patronising manner, straight away assuming a lack of mental capacity, something we’d hate to have done to ourselves. Being disabled does not make us immune to treating other disabled people in a paternalistic manner. It’s easy to think that you know better what someone needs than they do but that doesn’t make it right. Of course it’s not just individuals; far too often do I watch councils and organisations choose to talk to carers or people with physical/sensory disabilities about how to cater best for a clientele consisting mainly of people with cognitive disabilities. Shouldn’t they include the people they are supposed to be serving? Is this assumption that they “wouldn’t get anything useful from them” not just another way of propping up the disablist status-quo?

For years disability rights activists have clustered around the banner “Nothing About Us Without Us”. I think today is a good time to take a few moments to have a think about the inclusive meaning behind that statement and how we can best work to make it a reality.

 

 

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You can read all of this years BADD posts by heading over here!

Disabled Women & Domestic Abuse Posters

I stumbled upon two extremely poignant posters created by Women’s Aid to highlight some of the issues surrounding domestic abuse and disabled people. You can click the links to download .pdf versions.
They are fantastic resources and free to anyone wishing to use them. You can find the originals here.

Disability & DV Poster 1

disDV1

Disability & DV Poster 2

disDV2

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