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

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

 

*waves* I’m Still Here!

I haven’t posted in ages and I’m really sorry about that.

It’s been a pretty hectic summer for me and I’ve had some health issues that have just eaten all my spare spoons I’d normally use for blogging. I’m hoping that now things are settling down that I can get back to normal!

As you may or may not know I’m pretty passionate about doing what I can to try to improve other peoples experience of Birmingham City Councils (BCC) Adults & Communities division (adult social care). I had quite a few issues with them, the DWP, Atos and the NHS wheelchair service when I first became physically disabled which is one of the main reasons I became a disability rights campaigner. I wanted to do my part to ensure that others in the same boat had a better experience than I did.

Now many of the issues surrounding adult social care aren’t things that that are within adults & communities remit to deal with. Social services cannot force Osborne to free up extra funding for them in his budget, nor do they have the last word on how much the local councillors decide to devote to the department. They can’t ignore national initiatives they are compelled to take part in nor can they interfere in the NHS. What they can do is work with the resources they have to commission appropriate services and to try to force up the quality of third party contractors where possible. They can also look at their own services and make sure they are appropriate, upholding citizens rights and of a good quality.

I’ve joined a Citizen-led Quality Board which works alongside BCC Adults & Communities to look at the why’s, what’s, when’s and how’s of their commissioning process to point out problems, encourage good practice and share citizens ideas and concerns.

I’m going to endeavour to write up a few posts about various areas we are covering in an effort to both share information and to look at our performance. Until then, look after yourself & I hope you have a great October x

DLA Applications and Appeals

I know that DLA is vanishing very soon but there are still lots of people who are still applying & appealing the benefit.

If you are then you might well find this free guide from the Disability Law Centre extremely helpful. It details in plain English exactly what they are looking for to award DLA. If you are answering the initial questions then bear these criteria in mind when you write your answers

So, if you believe that you qualify for Lower Rate Care you need to meet at least one of the following two statements;

1. To get the low rate you have to need care and attention in connection
with your bodily functions for ‘a significant portion of the day’ (usually at least
an hour); or
You are unable prepare and cook a main meal for yourself. This is known as
the ‘Cooking Test’. 

If in your form you don’t clearly express that you are unable to prepare AND cook a main meal for yourself then you won’t be eligible. Or if when explaining how many minutes care you need for various tasks they don’t add up to at least an hour you quite probably won’t be found to meet the requirements either.
Of course it’s no guarantee that it will go through straight away, they may miss something, say your evidence to support your claims was inconclusive, you didn’t score highly enough on a Atos assessment or a whole host of other things. 
You can though use the information in this guide to really help you write a strong appeal. If when you appeal you follow a simple format where you quote the criteria you think you meet to start with like this;
“I believe I meet the criteria for the Low Rate Care Component because I cannot reliably/ I cannot prepare and cook a main meal for myself.”
Then you really should finish off by tying that statement to the relevant evidence such as;
“I get extremely disorientated when trying to cook which makes it impossible for me to complete either the preparation or cooking of food. My doctor/consultant/OT/social worker explains this in the letter I have included/did include with my initial application as evidence.”
If it doesn’t work as part of a written appeal then hopefully a tribunal will listen.
If anyone else has any good resources then please list them in the comments section.

#FemSchool13 – A Quick Summary Of My Weekend

I spent this weekend at the annual UK Feminista Summer School. It’s a weekend where feminists/women’s rights activists come together to learn from each other, organise and get inspired. All in all I had a wonderful time. Contrary to the picture the media presented the weekend was not all about ending Page 3 and Lads Mags to the exclusion of all else. Rather it was a eclectic mix of intersectional workshops and talks covering subjects such as class, race, disability, sexuality, arts, campaigning, lobbying, the criminal justice system, economics and much more.

The main hall starting to fill up for the welcoming meeting.

I arrived on the Saturday morning to take part in the welcoming panel with Lara Bates from the Everyday Sexism project and Constance Nzeneu, Migrant & Refugee Woman of the Year winner. The panel was great fun, it was a bit odd to be sitting in front of all those people talking about my activism and why I campaign for change, but if it helped one other person realise that they could make a small difference I think it was worth it.

Myself & Laura Bates getting ready to sit on the panel.

My personal goal for the weekend was to try to get as many people as possible thinking about disability as both a part of feminism and a important civil rights movement on it’s own. I really do believe that the struggle for civil rights needs to be intersectional. We are all stronger if we work together while, of course, still respecting the need for our own spaces. After the welcoming panel I went to a Mental Health & Intersectionality workshop where we were urged to look at how various types of oppression can exacerbate and cause mental health problems.

I followed that up by going to a workshop I was personally interested in – Women in Prison – which looked at how the current system is not set up to deal effectively with women in the prison system or after release. We learned that the vast majority of female prisoners have mental health problems, many of them personality disorders, which stem from frequently traumatic/turbulent childhoods. We learned a bit about how the system can breed dependency as well as how there is little scope for meaningful rehabilitation without structured support outside of prisons. It was a fascinating session, one I’m really glad I went to.

Instead of going to a third workshop I offered to run a open space session* on disability and language entitled “That’s so lame!”. I chose that name because I wanted to take a word that is used everyday by people in all walks of life that has disableist connections and use it to challenge the audience. Over the last couple of years I’ve discovered that many people who use the word lame to mean rubbish often don’t realise that the word refers to someone who is physically disabled and has a impairment that effects the ability to walk or effects the use of a limb. So we discussed the institutional disableism that creates a language where words describing impairments become interchangeable with words like rubbish, pathetic, useless, defective, dull & stupid in the collective consciousness. We also talked about differences between US & UK ways of talking about disablism and more to boot. It was really enjoyable. I finished off the day by going to the disabled women’s safe space meeting.

On Sunday I was running (with the help of my friend, Jackie) a workshop on Disability, Feminism and Activism. Given how awesome the other workshops happening at the same time sounded I was really happy that we still got a decent sized group. We covered a lot in the hour we had; the basics of disability, the pro’s of intersectionality and a run down of the last 40 years worth of campaigning for disabled peoples rights. We did some group activities as well thinking about feminist areas of interest that strongly intersect with those of disabled people (like reproductive rights, abuse, education, body image, austerity etc..) and thinking about campaigns both movements could join together to in. The attendees were fantastic and I had a super morning chatting with them.

I had to leave after that point because I was a) almost out of spoons and b) had a family engagement that afternoon. It was a wonderful event and one that I’d recommend to anyone interested in meeting other feminists and/or learning some new skills and theory. I’m really sad that I didn’t get the chance to go to any of the workshops exploring other intersections like sexuality or race but hopefully I’ll get the chance next year.

*At open space sessions anyone can suggest a topic/plan they’d like to talk about and meet others who are interested in doing the same. 

Ableism Or Disablism?

Nearly all the big US based blogs on line talk about ableism being something experienced by persons with disabilities because we live in a society where being able-bodied gives you a level of privilege/being a person with a disability means you experience oppression specific to that.

Many of us in the UK who fight for disabled peoples rights don’t use that language. We talk about disablism the oppression faced by disabled people, because society is set up to primarily cater to the needs of non-disabled people.
Which set of language is the best to use? Is there even a difference? Are those in the UK backwards?
I have opinions on this so I’m going to share them (it’s what blogs are for after all). You can make up your own mind. All I would ask is that you have a think about what the words mean, the sentiment attached to them and if you think they are contributing to make the world a more equal place for everyone.
There are two big models of disability which state the following;
  • The Medical Model – That people are disabled by impairments* e.g. Jean’s amputation is why she can’t get into all the shops she wants to or, David’s Downs Syndrome is why he struggles to find work. In feminist terms it’s like saying women don’t have equality because their biology is the problem.
  • The Social Model – That people with impairments* are disabled by an inaccessible society e.g. Jean can’t get into all the shops she wants to because they were designed without access and/or staff are not trained to provide reasonable assistance; or David struggles to find a job because our society allows institutional stigma attached to his impairment to continue to exist. In feminist terms it’s like saying women don’t have full equality because we live in a patriarchal society.
We have all fought long and hard to move away from the medical model and move towards the social model and to move away from the language of the medical model that places the blame for inequality on the person with an impairment. Those who follow the medical model also have a tendency to minimise, dismiss or ignore impairments without a currently understood physical origin (including many learning disabilities, ME/CFS/Fibromyalgia, mental health conditions and other such things).
With this in mind I’m going to talk about why I personally think the words “able-bodied”, “ableism” and “people with disabilities” are problematic.
Able-bodied
I find language that describes people without impairments to be able-bodied, exclusionary and there for divisive. There is a pernicious idea held by many in society that most disabled people use wheelchairs (when less than 7% do) and that most impairments are physical impairments involving paralysis or amputation. It comes from things like media bias when selecting representatives, the international symbol for ‘disability’ being a wheelchair and things like the paralympics where there are a disproportionate amount of contestants with a limited spectrum of impairments. I’m sure you can see why this is less than ideal.
The phrase able-bodied suggests that all disabled people by contrast don’t have able-bodies, which is;
a) impairment focused, something that feels very close to the ways of thinking enshrined in the medical model,
b) plays into the problematic stereotype mentioned above and
c) clearly not all disabled people have physical impairments which make their bodies non-able. A person on the autistic-spectrum or with schizophrenia is completely able-bodied yet I think we can agree they still have to deal with stigma & oppression/exclusion from society. A person who uses glasses to correct a physical visual impairment may not ever think of themselves as being disabled or non-able.
Using the social model we have a definition of disability which moves away from impairments and looks at societal oppression/exclusion/barriers faced by those who happen to have impairments. Those who experience that oppression are disabled by it, they are disabled people. Conversely those who do not are not disabled by it. They are non-disabled.
Ableism
Ableism stems from the same ideas that able-bodied does. That disability equates to not having a body that works as a “normal, able” body should. I feel that it too is exclusionary and harks back to the outdated thinking of the medical model. It also helps enforce the idea that disabled people are less able than non-disabled people. I would argue that there is a massive spectrum of ability within the disabled community, the same way there is a massive spectrum of ability within the non-disabled community. For those reasons I prefer the term disableism to describe the disabling oppression we face.
People with Disabilities
You may have heard about person first language. People with disabilities is an example of that. Person first language was coined as a better way about talking about people with impairments. It’s pretty simple, you talk about the person first instead of the impairment. So instead of saying “Go ask the epileptic” people now try to say “Go ask Steve”. If the impairment has to be mentioned then it gets mentioned after the person has been, for example “This is Steve, he’s here today because has epilepsy and it’s flaring up at the moment”. It’s a great way of using language to avoid de-humanising people with impairments.
The thing is that it’s a great way of talking about impairments. As I hope I have explained disability is subtly different to impairments, the two words do not mean the same thing. Both words have different meanings. Impairments are something that a person has a level of ownership over, they are frequently part of who they are. Disability on the other hand is not, it’s something done by an inaccessible society to a person. If we were to imply that it was something owned by the person then we’d be taking a big step backwards to wards the medical model. This is why I (and a lot of others) prefer the term “disabled person”. It is a stark reminder that the individual is disabled by society. I have heard the arguments that “people with disabilities” is trying to do just that, but I personally don’t think that using the language of talking about impairments to talk about disability instead is anything but confusing and slightly counter-productive.
I know that there are plenty of people out there who would argue that the phrase ableism is inclusive of everyone who is disabled, it’s not the word and it’s construction people should pay attention to it’s the meaning/intent. I personally don’t agree. Words have meaning, words inspire imagery, words strengthen or weaken conceptions, words are frequently read and heard without intent. I also understand that there are plenty of vaild criticisms of the social model and of the very words disability and impairment and their origins and connotations. I don’t want to turn this blog post into a thesis though so I’m going to leave them for another day.
I don’t expect you all to agree with me, but I hope this post has helped people explore some of the issues around the language we use.
* an impairment is any medical condition (be it sickness or not), mental health condition, learning disability, genetic or cognitive condition etc..
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