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Some Disability Theory Basics

standard preface – I’m not a philosopher, sociologist or other sort of academic. I’m a drug addled crip that likes to learn and studied some geology over 15 years ago, but I have things I want to say regardless.

a modern abstract composition, with some almost futurist elements

Composition, by Balnur Assanova

Let’s talk about a goal most of us on the left at least claim to have, and that making sure disabled people are no longer marginalised in society.

Historically people have placed the blame for the negative experiences people with impairments (and by impairments I mean conditions/disorders/bodily differences/neurodiversity/madness/mental health and so on) have on the impairment. Struggle to physically complete a task? It’s the fault of the impaired body. Struggle to behave in a certain way? It’s the fault of the impaired body. Struggle to think/learn a certain way? It’s the fault of the impaired body. Because the impaired body is the cause of the issue, “fixing” it becomes the accepted remedy. This is the idea that we have all grown up with, and it’s reinforced by healthcare professionals, pharmaceutical companies, teachers, families, friends, employers and pretty much everyone you meet.

This idea is known as the medical or individual tragedy model of disability.

So far, this might not seem like an issue. Maybe you are a disabled person yourself and you’re thinking “yeah my life would be better if I no longer had this medical condition/bodily difference”. And in this current society we live in you’d probably have a point, your life might be easier. The thing is, most of us aren’t going to ever be “fixed” within our lifetimes. In fact, when you start thinking about it fixing all impairment, or eradicating all impairments as we could easily call it isn’t a particularly desirable outcome. Would we need to start wide spread eugenics practices to get rid of those genetic impairments? Who chooses what sort of body and genetics is acceptable? How about the changing definitions of impairment, health and well-being? One decade one style of physicality, learning, thinking and behaving is in, the next another is favoured as employers demand different things from their employees, and the systems that are tasked with producing them. Will the definition of a genetically acceptable body always be the same as social and environmental conditions change? Is it ethical to reduce our biodiversity like that? What about those that acquire impairments, from people with traumatic births, to those that have workplace accidents, to those that develop dementia or have a severe stroke? Are we really hoping medicine will “fix” every single one of those in the foreseeable future, or will they still find that they are disabled? What about things like depression and anxiety caused by social/environmental factors? There is nothing there for medicine to fully fix as we understand it, only for medicine to (possibly) help ease some of the symptoms of it. The more you think about this stuff (and I’m only giving a light introduction here) the more you can see that the goal of removing the marginalisation of people with impairments by medically “fixing” them is not only nigh on impossible in a world where new ways to become injured pop up all the time, and the genes of both ourselves and the viruses that attack us are continually evolving. Until we hit some kind of magical medical singularity, it is crucial that we accept there will always be people with impairments, and that they will remain disabled, even if some of us that are currently disabled wouldn’t because there would be a cure, or we would have been eradicated. This model does nothing to ease the marginalisation of those disabled people, in fact, one could argue that by labelling their existence undesirable it will increase that marginalisation.

Why if this is such a dodgy basis for understanding disability do we continue with this conceit? Well, the main reason is that it’s embedded into society. Take the popular language around disability used by lay persons, and you can see it perniciously encourages this line of thought, person first language to describe impairments (“person with X impairment”) is now used interchangeably with the phrase “person with a disability”. To most you ask, they will tell you disability is just another way of saying impairment, ipso facto the way to remove disability is to remove impairment.  There is also the issue of capitalism. As a system it is only interested in people and things that can improve production (and by improve, I mean, reduce costs and raise profits) and it has little care for those that don’t fit the mould of the “good employee”. Unsurprisingly, people with impairments often cost more because they can’t use the cheaper standard methods of training, the cheaper standard equipment, or work 8hrs+ solid with only two short breaks and so on. After a point it’s cheaper to put them on some form of welfare than try to make that square peg go in the round hole. Of course welfare can’t be a pleasant experience, if it was then more people might try to claim it. Levels low enough to ensure constant poverty help. Constant stories about scroungers, liars, and the general undeserving poor, that are replete with mass public shaming and hate also work well to discourage people from looking at it favourably. These things may have knock on effects on those receiving welfare, but that all adds to the general misery of it which further decreases its appeal to the employed. The idea in the public subconscious that the individual with the impairment is flawed beyond fixing helps people excuse our marginalisation. We are disabled because we are broken, and as the majority of impairments are acquired, we either didn’t look after ourselves properly, or the sins of our caregivers have been placed on us. We are morally inferior. And these notions of moral inferiority are propagated by the medical industry, be it the regulated world of hospital and pharmaceuticals or the unregulated world of “health & well-being” advice. They all tell us that we can prevent impairments by making the right choices. They tell us we can avoid disability by doing the right things. We, or those with guardianship of us, didn’t make the right choices. They chose the wrong hospital, followed the wrong advice, didn’t take the right pills, ate the wrong things, inhaled the wrong air, chose the wrong location to live, chose the wrong job, the wrong school, the wrong family, the wrong country, they shouldn’t have stayed, they shouldn’t have left.

If it wasn’t the fault of the individual then people would have to consider that disabled people are treated terribly by our current system and the punishments they endure from extreme alienation to horrific dehumanisation, abuse, murder and state/socially mandated eugenic practices are grotesque. That is a lot to come to terms with, when you could instead shrug, and calm yourself by saying “Cynthia shouldn’t have listened to all the doctors that told her red meat was healthy as a youth and kept eating so much, she wouldn’t have gotten bowel cancer if she had done that. Red meat eaters are to blame for their cancer, and bowels are gross, so it’s understandable that that research is less well funded. I don’t eat red meat anymore so I’m safe”.

image of 9 eyes painted in a pop art style

Modern Eyes, uncredited artist

Ok, on to the social model stuff now. I promise.

Disabled people that accept that impairments are not leaving us, at least in our lifetime or that of our children’s children, instead chose to focus on that which can be changed, and which will create lasting change which will help all the people with impairments in the future. They choose to look at social, cultural and environmental changes that will reduce alienation and marginalisation. They suggest that these factors disable people with impairments. This is the social model or social theory of disability. Unlike with the individual tragedy model, the concepts of disability and impairment don’t mean the same thing. This can take some getting used to, especially because the word impairment has suffered the same fate as any word that describes medical conditions eventually does, and gained negative connotations. Sadly I don’t think there is any label we could give the phenomena that wouldn’t go that way because of how society at large views impairment & disability, therefore I stubbornly keep using the term. Instead of being a person with disabilities, you are a person with impairments that is disabled by a world that discriminates against people with impairments. You are a disabled person.

This doesn’t mean your impairments don’t exist or don’t effect you as much or sometimes more than than the world around you. It just means that if modern medicine can’t do anything else for you, or if you don’t want it to because you are happy as you are, then there is nothing more that can be done for those here. The social theory isn’t about getting rid of pain, fatigue, flashbacks, neurodiversity or other symptoms of impairments you might not like. That is for doctors and scientists, who are naturally welcome to keep working on ways to make people feel more comfortable. This is about challenging the systems that make our lives miserable. Challenging the notions that life on welfare should be miserable, challenging the notions that there is a “normal” type of body and mind, challenging ideas about civil engineering works, challenging ideas that adaptions are always ugly, and that it’s better to stop disabled people accessing buildings than to add them, challenging ideas about sex and desires, challenging power imbalances, challenging the notions that access for all is a luxury, asking if our current arrangements are the best we can do for disabled children and adults, challenging stereotypes and myths, challenging the notion that our society wouldn’t be enriched if it embraced a diversity of ways of communicating and thinking, and obviously challenging capitalism which may not have invented impairments – but certainly drives and exacerbates disability.

If you’ve got to the end of this and you are thinking “we need a grand theory that encompasses both the medical and social models” then hold your horses. You aren’t the first, and many have tried. Often leading to a watering down of the anti-capitalist aspects of the social model, and a focus on improving employment outcomes. They tend to get very centrist very quickly, and like with centrist politics, no one is happy. The famed bio-psycho-social model used by the Department of Work & Pensions which defines seeks to tell people they are still impaired (but no longer disabled – see that social model reference) when they can hold down a full time job, and that they can do that when once a day they can lift 1 pint of milk. The issue is that it doesn’t do anything to remove the marginalisation disabled people face, in fact it increases it by using it as an excuse to reduce access to medical/social support. It also has it’s basis in outmoded and often racist, homophobic and sexist aspects of the individual tragedy model, where it is on the person to get better if they want to, and not to make poor life choices, like claiming welfare. The end result is that it all ends up with the same problems of the individual tragedy model, while destroying the best bits of the social model and warping what is left to mask dis-empowerment.

I personally believe instead of continually trying to merge two incompatible views a social model of impairment really needs to come along to challenge the presiding medical model of impairment. Something that examines the social roots of many impairments and the transitory nature of our definitions of bodily normalcy and health. Especially because there is so much to explore in the overlaps with queer theory and studies of racism and colonialism. Were I academically gifted in this arena it would be something I’d love to work on myself, until then I’m just going to content myself with pestering academics to do it.

Love to all of you that made it to the end, that was a long one x

 

Rights? I Want Liberation – BADD 2017

It’s blogging against disablism day today so I thought I’d get on and blog. For non-UK readers, or those in the UK that have grown up on US blogs, I’m going to use the following language here because;

disability defs

I’ve got to the point where I don’t think being for rights and social justice is enough to get rid of disablism.

When we look at the patriarchal capitalist system we live in, it becomes clear that disablism is a function of it. Anyone that doesn’t fit societies standard of “normality” due to a perceived impairment experiences it. The looks, the “oh, people like you can’t come in here”, the pity, the stereotypes, the anger, the judgement. As long as we live in a world that believes that the ideal body and mind is that of a “healthy” person, where “healthy” is a way of describing an “ideal” worker in a capitalist world, we will always have disablism.

To fight for rights and the associated justice, we fight to make this capitalist system more accommodating. But as long as it remains no amount of rights or justice will provide us with an end to disablism. Society will continue to praise the non-impaired, the non-disabled, and to look at those of us that don’t fit the bill as abnormal. Society will continue to make the harmful moral case that to be “healthy” is to be a “better person”. People with impairments will still be disabled people.

No. If we want to end disablism, and achieve liberation then we need to end capitalism and build a new society that no longer idealises certain types of bodies and ways of thinking over others.

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.

recovery-diagram-sane

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

Continue reading

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

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

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!

It’s been a tough six months

I’ve not been so well over the last 6 months and I feel like I want to explain myself.

A lot of what I’ve written about has been about how being a unemployed wheelchair user with a chronic pain condition effects my day to day life. This time, even though there have been a fair few big physical health flares in the last half year, it’s been my mental health that has been the biggest barrier to living my life the way I’d like to.

As you may or may not recall, in September I ended a 3 year slog of intensive psychotherapy. It was all part of the process to help me come to terms with, and move forward from my past. Five years of horrendous domestic abuse and three years of hell afterwards coupled with the trauma of being burned from neck to ankle and of being raped on top of dealing with becoming physically disabled left me needing some help to make sense of it all. It was very easy to believe that either the world was a terrifying place and that I was better off dead than living in it or that I brought all that stuff on myself because I was a fundamentally broken & despicable person (and was therefore better off dead). Feeling suicidal constantly is pretty tiring, simply living becomes such a battle there is hardly time to deal with anything else. Understandably I wanted that feeling to go away and was prepared to work very hard to get that noose off my neck.

Over the years I managed to come to terms with it not all being my fault, that maybe I was not some sort of monster, that people do not always view others with empathy and coincidence is something that really happen. I got some of the most debilitating elements of my PTSD under control, came to terms with the fact a pretty hard life had left me with a personality disorder & some pretty severe dissociative problems and learned to differentiate “not wanting to feel this way” from wanting to be dead. All in all it was pretty successful! The therapy ended as well as it could, I knew it was coming & we talked about it plenty before the end came. I left feeling like I had achieved a great deal and was ready to take a break from the process for a while.

I wasn’t expecting, and certainly wasn’t prepared, to be a victim of my own success. The thing is I’d learned to dissociate at a very young age and had come to rely on it heavily as a defensive mechanism. It makes it difficult for me to connect with my memories in a meaningful way – which helps to protect me from the pain but makes acknowledging & accepting it all pretty hard. I’d done a lot of work to break through that defense mechanism thinking that I could cope with what ever surfaced as a result. You can guess what’s coming next. It turns out I didn’t cope very well. The whole world became unbearably scary, every thing courted a panic attack, flashbacks started getting triggered left, right & center, I started sleepwalking when I wasn’t having nightmares and I stopped being able to manage interpersonal relationships as well as before. 

Because of the nature of the online world, especially when you work to raise awareness of issues like feminism and disability, I decided to step away before I let it exacerbate my condition. I ‘m sure I’ve missed out on loads of interesting conversations, debates and ideas – something I’m going to try to catch up on though it will take some time. I’ve missed you all and I’m looking forward to getting back to normal x

 

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