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

 

Unpacking Disablism in UK LARP Design

I wanted to write a bit about disablism in the UK LARP scene. Something that might not interest some of you, but interests me.

A quick bit of context for those larpers that don’t know me: I’m a disabled LARPer; I use a wheelchair because of an enduring set of impairments, I have enduring mental health issues and I like to attend collaborative storytelling events. I like to think of myself as progressive and part of the UK (not US) disabled people’s movement, so I use the language we use to describe myself and other disabled people (should you be wondering about the choice of, for example, disablism rather than American terms like ableism).

empire 2, 2017 - beth dooner

Photograph of three larpers, including myself using a wheelchair and another using a stick for support (and looking awesome). Photograph taken by Beth Dooner, Empire LRP, June 2017.

Disability is, at it’s root, a function of an inaccessible world. It’s people with impairments (such as medical conditions, or differences in functioning to whatever society is calling “normal” this year) being stopped from accessing all the things non-disabled people can. This isn’t about getting rid of disabled people’s impairments, it’s about ensuring that with those impairments they can still get the same out of an experience. In traditional LARPs that is something we fail at spectacularly. There is a lot I could talk about when it comes to disablism and LARP; player/crew/monster preconceptions, venues (access vs aesthetics), tactics for disabled players and so on. However, today I’ve picked LARP design. Partly because I just designed and ran one with a couple of excellent people with access at it’s core, and because I have had a number of conversations about it since then.

Unpacking Common Barriers to Access

There are some really common themes in LARP design that are both super popular with non-disabled players yet often profoundly inaccessible at their core. Because I’ve been taking about it today I’m going to use the LARP shibboleth, “the Linear” as an example. Continue reading

When Your Body Takes Another Road

Statistically, there will come a point in nearly all our lives when our body stops behaving in a “normal” way and doesn’t stop. Sometimes it’ll be sudden, some times it will creep up on us, and for some it will have simply always been that way. The thing that we have in common is a sense of loss for that normality, and a completely human need to grieve for it. This post is going to be primarily aimed at those that have acquired a long-term condition/impairment or had one worsen, as that is an area I have experience in.

Loss can be categorized as either physical or abstract, the physical loss being related to something that the individual can touch or measure, such as losing a spouse through death, while other types of loss are abstract, and relate to aspects of a person’s social interactions.

We all grieve differently, it’s far more complex than just feeling sad. While yes, some do feel sad, some also get angry, some withdraw, some cling, some seek justice, some seek to keep the memory of the past alive, some hunt for meaning, some wish to campaign for better, some choose to support others, some try to make a new normal as quickly as possible. Most will travel through a mixture those different states before “recovering”. Of course recovery is an odd one when what you are grieving is an abstract loss of normalcy. Gone is the “normally” functioning body and/or mind, gone is the normal way of doing certain things, gone are the “normal” expectations about how you fit into the world be it with friends, family or with your paid/unpaid work, gone are you hopes of being “healthy”, gone are the ways you learned to navigate certain challenges, gone are the dreams you had that relied on being able to function “normally”, and most hurtfuly, gone (or at least severely dented), is the idea that you are “normal”. Continue reading

PIP Application Advice

I know a lot of folks that are either apply for, reapplying for and being transferred on to PIP. Heck, I’m soon going to be in the latter category. A question that often comes up is “How best can I apply?”, or “What should I write?”. Here’s my advice and I hope you find at least some of it useful.

Once you have you PIP form the best way is obviously to contact your local CAB and see if they can help you. They’ve done millions of these and know it inside and out.

Unfortunately the CAB isn’t always an option for many of us. Then we need to find ways to do it alone. In these situations I think it’s important to try to put yourself in the position of a DWP decision maker;

  • they are under pressure not to find too many eligible
  • they have to read a lot of these in a day
  • they are probably tired, stressed, and a bit numb to these applications
  • they’ve probably seen it all before

It shouldn’t be that way, but it is. If you can make it easy for them to give you points then hopefully they will

There is a simple formula I use to do these and it is as follows;

Firstly…

Look at the tables that show you what the criteria is for each section. You can find them in a handy table in this PDF from the Citizens Advice Bureau by clicking here. Or I will provide a list of the current points at the bottom of this post for those that would prefer it.

Once you have read those, look again at the wording and consider the following:

Does it apply to you?

Continue reading

Recovery Vs Management

When talking about long-term conditions/impairments there is a tendency to talk about the individual being on a road to recovery. Where recovery is a mystical place in which the individual will once more be “the person they were before developing a condition/impairment”. Now that’s a huge ask! If you were to ask a non-disabled person to be like the person they were five years ago they’d struggle a lot.

I think we can look at recovery from two different angles,firstly the removal of physical impairment and then there is a mental recovery, the idea that one will forget the rubbish they’ve been through with their health and go back to being a “normal” non-disabled person. At this point though I think we have to drop the pretence that recovery is ever going to get you back to how you used to be. It is more that recovery is the road to becoming non-disabled. Something that’s not possible for many of us, and for those in doubt I’m going to look at the idea of recovery from a physical and mental standpoint now. Continue reading

It Hurts So Bad I Can’t Feel It

I’m going to talk a little bit about dissociation today, or more importantly I’m going to talk about dissociation when it gets out of control and becomes a problem in everyday life. I say this because we all dissociate, everyday, all the time and it’s important to remeber that it’s not always a problem.

What is dissociation?

In psychology, dissociation is any of a wide array of experiences from mild detachment from immediate surroundings to more severe detachment from physical and emotional experience. The major characteristic of all dissociative phenomena involves a detachment from reality, rather than a loss of reality as in psychosis.

At the milder end of things we have the everyday dissociation;

  • drifting off while reading or listening
  • feeling numb when dealing with difficult news
  • going through rote motions with no thought
  • creating sub-personalities (this is work Bob, this is party Bob and so on)

At the more extreme end of things then it can take on more distressing forms;

  • finding yourself in a strange place, unaware of how you got there
  • amnesia
  • depersonalisation – feeling like you aren’t in, or fully in your body and you are watching it act
  • derealisation – feeling like the world around you has changed, be it in appearance or in deeply held feeling
  • identity disturbance – this can vary from not being sure who you are or what your feelings are (usually because of a mix of the above) through to fragmenting into multiple alternate personalities.

Why does it become so extreme in some people?

Continue reading

Falling into a Crisis

Mental health crises are an inevitable part of the course when you live with the after effects of trauma. PTSD (Post Traumatic Stress Disorder), or EPCACE (Enduring Personality Change After Catastrophic Experience) as they are now calling it is something that is an everyday part of my life. As with most things, some days it’s bad, some days it’s alright and some days it’s average.

Some days however, it gets bad and then it stays that way. Well, it actually gets worse. You see, I get exhausted from a lack of sleep, from being constantly on edge, and from fighting to stay in the present day rather than slipping into the scary past. When I’m exhausted I can’t manage those symptoms as well so they get worse and I in turn find them harder to manage. At that point I spiral beyond “bad” and into crisis.

I’m in the crisis spiral again right now. I know the drill, take whatever drugs you need to ensure you get some sleep and rest. Do whatever you can to isolate yourself from sources of stress. Once I’ve got the rest it’ll reduce the severity of the symptoms, and I’ll have the strength to manage the ones that remain. It’ll all be easier. Right now it doesn’t feel like it’ll ever be easy again of course, that’s the problem. I’m struggling to have faith that things will ever feel better, and for all I tell myself that’s part of the viscous cycle I can’t quite grasp that it is. This time, my mind keeps telling me, it’s different. This is the time you don’t get better, this is the time you get drowned by it all. Continue reading

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