Archive for the ‘ disability ’ Category

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..

What Is The Mental Capacity Act?

Last week I attended an interesting talk on the Mental Capacity Act (for beginners I should add) and I thought I’d share what I learned with you.

History

In 1994 a man with profound learning disabilities and complex care needs was released from residential care to live with a family in Surrey. He developed a routine and went about his life without serious incident until 1997. The family said of the first 3 years “It’s fair to say that it was a challenge – but it was rewarding to see how much [he] benefited from living in a family setting. At first he was very institutionalised, but he gradually became more confident and progressed beyond all expectations.”
He attended a day centre once a week and did so without issue until one day he got on the bus to find he had a different driver who took a different route to the day centre. The man arrived feeling very agitated and staff had difficulty calming him down. The next thing the family he lived with knew was that he had been “admitted informally” into hospital without their consultation. They were also informed that they were not allowed any contact with him. This was all done after one quick consultation with a doctor who did not know the man or his family, because of how the system worked then all they had to do was claim it was in the man’s “best interests” and they could remove his liberty with no option for appeal.
The family began a lengthy legal battle which lead to the man coming home and the discovery of the abuses he had experienced whilst detained. The Department of Health fought the legal action and eventually it ended up at the European Court of Human Rights. In 2004 the ECHR ruled in the man’s favour and as a result the UK government released the Deprivation of Liberty Safeguards, part of the Mental Capacity Act 2005, which came into force in 2009. This case is known as the Bournewood Case if you wish to do more reading.

Purpose

The Mental Capacity Act 2005 (MCA) should provide a legal framework for dealing with adults over the age of 16 (18 with regards to deprivation of liberty cases) who are believed to lack the capacity to make decisions for themselves. This does not just apply to people with profound learning disabilities or cognitive disabilities but also applies to people who have lost conciousness*, are in shock or any other state that means they may (even temporarily) lack the capacity to make crucial decisions.

Principles

The MCA is decision specific. This means that it is only applied to somebodies ability to make one particular type of “decision” at a time. This should help to stop someone who lacks the capacity to make complex financial decisions also automatically loosing the ability to choose what to eat, whether to undergo a particular medical procedure or which activities they can safely engage in. It bears in mind that not being able to dress is not the same as not being able to bank. The only people thought to lack all capacity are those who are unconscious. On to of that there are five key principles which provide a framework for applying the MCA:

  1. Presume Capacity – when assessing people should always be presumed to have full capacity in all areas until it its proven otherwise.
  2. Allow for Unwise Decisions – it’s important to remember that people with capacity can still make unwise decisions. If someone with diabetes decides they want to eat a bag of sugary sweets it’s not necessarily a sign of a lack of mental capacity. Part of having capacity is having the ability to make both wise and unwise choices.
  3. Maximise Communication – not being able to communicate easily is not the same as lacking capacity. If someone can make choices then every attempt to help them communicate meaningfully should be made so they can maintain independence. If someone is in an acute state of shock and a choice can wait until they have regained their ability to communicate then it should be left until they can make it. If someone can communicate via eye movement only then systems need to be put in place so they can do that rather than declaring them to lack capacity.
  4. Best Interests – If after looking at the above principles someone is still thought to be lacking capacity to make a specific decision then it must be ensured that any action taken is thoroughly in the persons best interests. Not the best interests of local government, a care firm or friends/family members but the best interests of the person deemed to lack capacity. This should help protect the individual from abuse.
  5. Least Restrictive Option – When deciding what action to put in place for someone deemed to lack capacity the least restrictive option should always be used. If someone is deemed to lack the capacity to make serious medical decisions they shouldn’t be institutionalised. All other options, such as the use an advocate should be exhausted first.

Assessment

The assessment is normally done in two stages:

  1. They look to see if there is an impairment in the functioning of the mind or brain. If there is no impairment then a person has capacity and the process stops there. If there is an impairment then they go onto the next stage.
  2. Assessors check to see if the individual, with regards to a specific decision, can; understand information, retain information, use information and communicate decisions. 
If the assessment/assessors is looking at a potential deprivation of liberty situation (when restraint/medication used to “restrain”/1 to 1’s/ 2 to 1’s etc… are being used over a long period of time) then 6 assessments should take place which are preformed by a GP and a Best Interest Assessor to ensure it’s in a persons best interests and the least restrictive option available. The longest deprivation of liberty orders are for 12 months.
Mental Health Act
I should say that the Mental Health Act (MHA) and the MCA are two different thing with some overlap. People sometimes assume the two things are the same, they are not. The MHA is designed to ensure people who need treatment for a severe mental health disorder receive it, even if it goes against their wishes (as long as it can be shown that not treating them would put themselves or others at risk). People with severe mental health disorders can still maintain full capacity, so if they need to be detained so that treatment can be provided the MHA would be used, not the MCA. If someone with capacity is “Sectioned” because of a mental health problem and is being deprived of liberty then that is nothing to do with the MCA. On the other hand, someone could have a mental health disorder that has had the effect of removing capacity to make certain decisions but is not severe enough to warrant a deprivation of liberty under the MHA. In that case the MCA could come into play.
I hope you found that as interesting as I did, and I’m sorry if there are any parts I’ve not explained very clearly. 
* I don’t know if you remember but in the USA there was a spate of stories about people who had undergone CPR suing those who tried to save them for assault (because CPR frequently results in broken ribs and bruising), the MCA now protects those in the UK from the same threat of legal action as long as the action is clearly in the persons without capacities best interests.

An Intersectional Look At The Social Model

Today I want to look at the social model of disability and primarily how closely it intersects (overlaps) with feminist theory.

“In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.” UPIAS (Union of the Physically Impaired Against Segregation) statement from 1975

The Social Model in a nut shell

The social model of disability states that people with impairments are disabled not by their impairments (as the medical model states) but that they are disabled by the directly & indirectly inaccessible world we live in. The key to understanding the social model is understanding how impairments are different from disability. Within the social model any medical condition is called an impairment – a chronic health condition, a amputation, a denigrative disease, a mental health disorder, being non-neurological, a genetic condition or anything else that causes a body &/or mind to deviate from the “norm”. A impairment can have a variety of effects on a person which take varying amounts of energy to cope with. Some may barely notice an impairment others may feel it’s presence constantly and often overwhelmingly.

As mentioned in the quote above, disability is something imposed on top of those impairments. It’s being given a wheelchair to use but not being able to get it into shops because of poor accessibility. It’s being looked over for a job because of societal stigma about mental health. It’s being expected to live below the poverty line and lie for 12 hours daily in your urine because society thinks you don’t deserve more.

How does that all intersect with feminism?

One of the ideas in the social model is that because people with impairments do not fit our societies idea of normality they are treated less favourably, oppressed and forced out by society. This is done by stigmatising people with impairments, institutionalising them, sterilising them, refusing to educate them, abusing them, euthanising them and perniciously by ignoring them.

A quote from Rosemarie Garland-Thompson will hopefully tie this up;

“Female, disabled and dark bodies are supposed to be dependant, incomplete, vulnerable, and incompetent bodies. Femininity and race are performances of disability. Women and the disabled are portrayed as helpless, dependant, weak, vulnerable and incapable bodies.”

Feminism has long argued that the world we live in is a Patriarchy where overwhelmingly the voices of people in power are male because societal norms, values and cultures are set up to favour them. Being “male” becomes the norm which “female” bodies deviate from. In this way the oppression women face (as well as that faced by black & minority ethnic/ people of colour and LGBTIQ people is) comes from a similar place. Whilst the effects obviously vary, we are oppressed by not meeting the hidden arbitrary societal norm.

There are lots of ways that both feminist and disability issues intersect and that arguments from both sides can be strengthened if they are looked at together. I’ll give a example now by looking at one way that medicalisation of “difference to the normal” has been used to as a tool of oppression.

We can see  the normal actions and behaviours of female bodies have been pathologised throughout history because they deviate from the masculine norm. They have been thought of as hysterical, over/under indulgent, intellectually impaired and a host of other things. Today feminist theory would argue that the unnecessary medicalisation of the normal effects of hormones for example has been used as a social (and physical) tool to oppress women. We see the same when we look at how people with bodily differences are labelled as defective, deficient, freaks, subnormal, pitiable, eternally child-like, incapable and so on. Disability rights activists argue that impairments are normal and natural things which shouldn’t be automatically associated with any of the words listed previously. The same way that feminists would rightly argue that calling a woman who is publicly experiencing emotions as defective (hysterical) is problematic the same can be said about those who label those who were born with one foot as defective (cripples).

By looking at these issues together, and going further to include racial, trans* and sexuality critiques we start moving towards the the root of the issue; the oppression of those who deviate from a hidden ideal of normality (commonly thought to be a white, cisgendered, heterosexual, non-disabled man). 

UK Disabled Women Talking To The UN

The UK is signed up to a UN human rights convention called CEDAW (Convention on the Elimination of all forms of Discrimination Against Women). Every few years in the UK an independent organisation called The Women’s Resource Centre compiles a “Shadow Report” to highlight areas they believe the UK is either failing or succeeding in implementing CEDAW. Part of CEDAW is making sure that disabled women’s human rights are maintained.

Two representatives from the disabled women’s cooperative Sisters of Frida are in Geneva as I type to help deliver the Shadow Report and to present details to the UN. I’ve copied the information from their press release bellow if you’d like to know more.

” It is essential that disabled women are represented in processes like CEDAW reporting as too often our experience as disabled women is invisible, this is an opportunity to change this and show how the cuts and legal changes are affecting us”

says Zara Todd, Sisters of Frida steering group member.

For the first time, disabled women (Sisters of Frida) will take part with other women’s groups from the UK in Geneva to address the United Nations Committee on the Elimination of all forms of Discrimination Against Women (CEDAW) so as to highlight the problems impacting on women’s equality in the UK and what our Government must be examined on, and held to account over, by the UN. This is a unique opportunity for women to raise the key issues they are facing with the UN and the eyes of the world will be on the UK and their progress on women.

On July 17th the UK’s record on women’s rights will come under the spotlight internationally as the UK Government report to CEDAW on their progress. (They were last examined by the UN Committee in 2008. )

Women’s rights in the UK have come to a standstill and in fact some are being reversed. Government policies and austerity measures are disproportionately impacting on disabled women and the rights that were fought so hard by disabled people for are now being reduced. CEDAW is as an important instrument to disabled women as CRPD is important to disabled people and they are inter related.

The Women’s Resource Centre has coordinated a network of organisations across the UK who have produced a detailed shadow report which reflects on the Government’s report to CEDAW which was submitted in 2011. In October 2012 the CEDAW Working Group sent a list of key issues and suggested questions for the Committee to ask the Government to highlight the extent of discrimination against women in the UK which the Government gave a piecemeal response to in February 2013.

The shadow report – Women’s Equality in the UK: A health check – brings together issues impacting on the realisation of women’s rights under CEDAW in the UK in order to support the Government to make positive changes in the future.  These are the recommendations put forth in the shadow report on disabled women’s rights

  • Take into account the intersection of gender and disability and mainstream disabled women in all Government policies
  • Implement an effective data collection system which is disaggregated by sex, age, disability and region, which can inform the developmentof policies and programmes to promote equal opportunities forwomen and girls with disabilities
  • Specific strategies are needed to target disabled LBT women as they experience multiple discrimination through homophobia within disabled communities and services, and negative attitudes to disabled people in LGB&T communities and services

On health and social care

  • Take steps to address the poor health conditions of women withpsychosocial disabilities. Disabled women typically receive healthservices that are targeted at women in general or at disabled people in general, services need to be targeted specifically for them
  • Improving access to mental health services for disabled women must be accomplished by services that respect the right of disabled womento make their own choices, in accordance with the Convention on the Rights of Persons with Disabilities (CRPD)
  • Allocate more financial resources to Social Service Departments,requiring them to use the interpretations of the social model of disability when assessing disabled people’s support needs for a ‘care package’
  • Ensure women and girls with disabilities are educated about sexual and reproductive health, including Sexually Transmitted Infections and maternal services and adopt reforms to improve healthcare services and facilities, including in respect of sexual and reproductive health

Political and public life

  • Educate media about the discrimination disabled people experience, and encourage them to report the ‘real’ stories including monitoring the portrayal of women with disabilities in the media alongside industry self-regulation
  • The UK Government should offer extra support for disabled women who want to become MPs, councillors or other elected officials to tackle their under-representation in public policy

Economic and social benefits

  • Simplify the application process to the benefits system. Most importantly, the system should recognise that disabled people are experts on their needs and the difficulties they face. The benefits should allow for them to remove the barriers they experience on a daily basis

Disability hate crime and violence against disabled women

  • Ensure steps are taken to address the heightened risk for girls and women with disabilities of becoming victims of violence, abuse,exploitation and harmful practices, such as forced marriage, in thehome, community and institutions
  • Effective legislation and policies must be put in place, including Women – focused legislation and policies that include disability, to ensure that instances of exploitation, violence and abuse against women with disabilities are identified, investigated and, where appropriate, prosecuted
  • Ensure that both services and information for victims are madeaccessible to women and girls with disabilities which guarantee their access to redress and protection, including training of police and others and increasing the number of accessible domestic abuse refuge services

Rural women

  • Increase accessibility in public transport, and train bus/train staff to assist disabled women travelers

“We believe that the way the UK Government is implementing welfare reform is having a significant and vastly disproportionate effect on disabled women. These policies on welfare reform are failing to ensure the rights of disabled women and impact assessments are not carried out properly resulting in erosion of the rights which they currently have. The regression of human rights being conducted against UK citizens in the name of welfare has a disproportionate and exponential impact on disabled people. The changes to legal aid means that disabled women have no recourse to support against the discriminations further compounded by gender, race, sexual orientation, the class system, and underlying social deprivation,”

says Eleanor Lisney, Co-ordinator of Sisters of Frida, together with the Glasgow Disability Alliance (who also submitted a report to CEDAW )

The Appendix 36: General Recommendation 18 – Disabled women is at http://thewomensresourcecentre.org.uk/wp-content/uploads/Appendix-36_General-Recommendation-18_Disabled-women_FINAL2.pdf (PDF)

Word doc Appendix-36_General-Recommendation-18_Disabled-women_FINAL2

The full shadow report Women’s Equality in the UK: A health check is at http://thewomensresourcecentre.org.uk/our-work/cedaw/cedaw-shadow-report/

For more information or interviews contact Zara Todd : zaraltodd@hotmail.com 0044 (0) 07952185958 and follow @FridasSisters (twitter), information about other groups from

Women Resource Centre Policy Officer Charlotte Gage,  charlotte@wrc.org.uk or charlotte.gage.uk@gmail.com 0044 (0) 7841508231 @womnsresource

Notes to editors

Sisters of Frida (sisofrida.org) is an experimental co operative of disabled and allied women seeking a new way of sharing experiences, mutual support and relationships with different networks.

The delegation to Geneva is made up of a variety of women’s organisations from around the UK who will be highlighting specific issues relevant to their work and the women they work with as well as bringing issues from organisations in the UK who are unable to attend.

Members of the delegation include:

Committee on the Administration of Justice (Northern Ireland)
Engender (Scotland)
National Alliance of Women’s Organisations
North East Women’s Network
Northern Ireland Women’s European Platform
Older Women’s Network Europe
Sisters of Frida
Southall Black Sisters
Wales Assembly of Women
Women’s Resource Centre

There are also representatives from the Equality and Human Rights Commission, Scottish Human Rights Commission and Northern Ireland Human Rights Commission attending to provide evidence in their roles as National Human Rights Institutions.

DWP announces reconsideration of eligibility criteria for PIP

The We Are Spartacus network have released a press release about the announcement that the government will re-consult on the mobility criteria. If you’d like to share it or simply read it then it’s here:

Disability campaigners welcome today’s announcement that the Government will re-consult on the mobility component of Personal Independence Payment, which replaces Disability Living Allowance for working age disabled adults. Organisations and individuals have been campaigning vigorously on this issue since we were shocked to hear, in December last year, that the walking distance criteria for the mobility component, and therefore for assistance from the Motability scheme, had been tightened from 50 metres to 20 metres.

A disabled man, Steven Sumpter, issued  legal proceedings in March arguing that the consultation process on the new benefit was flawed because the Secretary of State did not consult on the proposal to introduce the new benchmark distance of 20 metres. This was only introduced after all the consultation stages had passed. Consultees were therefore denied the opportunity to comment on the proposal or to explain to the Secretary of State how such a restriction to the benefit will affect them and their independence.

For many years the distance of 50 metres has been accepted as an appropriate distance criteria to determine limited walking ability – including for eligibility for the blue badge, for guidance to achieve an accessible built environment, in relation to other benefits such as Employment and Support Allowance and, through legal precedent and practice, for determining whether a claimant is ‘virtually unable to walk’ for the purposes of Disability Living Allowance.

Jane Young, an independent campaigner working with the We are Spartacus network, says:

“We are relieved that the DWP is to reconsider. Our concern in relation to the 20-metre distance is that disabled people with limited walking ability, who are dependent on their Motability car or other independent mobility solution funded by their allowance, would lose their eligibility and be unable to make essential journeys – to work, to visit their GP, to hospital appointments or to social activities. We fear many would effectively become isolated in their own homes, with all the implications of that for their mental and physical health.”

Whilst the Government’s announcement is extremely positive, we remain cautious. We need to make sure that the views of disabled people and their organisations are taken seriously and that the ultimate decision focuses on meeting the needs of disabled people rather than being narrowly focused on cutting the cost of the benefit. The ability of disabled people to participate in society depends on support for independent mobility; this should be the focus of this fresh consultation.

Belated BADD Post – What’s Your Excuse?

In any week I’ll see at least one picture of a disabled person doing ‘something’, often exercising, emblazoned with the caption “What’s your excuse?” or something similar. Here are some examples;

A picture of a quadruple amputee lifting weights with the caption “No excuses”
A before and after becoming a body builder picture of an amputee with the caption “Excuses. Let’s hear yours again”
Young boy, a double above the knee amputee with running blades, running with the caption “Your excuse is invalid”
This one has been doing the rounds again recently on facebook. A picture  of a double just below the knee amputee  using prosthetics rock-climbing. Normally shared with the caption “What’s your excuse?”

I hate, hate, hate these memes and I think you should have a problem with them too. “Why?” I hear you cry! “These pictures celebrate the achievement of overcoming disability/adversity! They are a force for good!”. Well I don’t agree, and because this is my blog and I’m writing this post I’m going to tell you exactly why I don’t agree.

They assume people reading are non-disabled.
These messages all seem aimed at non disabled people which is an issue in itself. It shows that on some level they are “othering” disabled people. Here disabled people are inspiration, not audience. If you want to build a world where disabled people are treated as equals then that’s not the way to do it.
If, on the other-hand, it’s not assuming that it’s audience is non-disabled then that’s also a issue. These things are really insulting to disabled people who for one reason or another can’t just pop out and climb a mountain and they place undue pressure on disabled people to conform to some heroic ideal. I’m going to talk more about these things in the rest of the post.

They forget there are many vaild reasons people can’t do those things.
Money. All of us have to grapple with the cost of getting to venues, paying entrance fees/membership and buying equipment which is often prohibitively expensive. If you are disabled then extra costs like adapted prosthetics  mobility equipment  care also cost a lot of money. A decent all terrain electric wheelchair is at least £15,000, then you need a specialist car or a trailer to move it in… It all adds up to quite a lot before you factor in the costs of powerful, safe to use grappling hooks and strong rope so you can try your hand at mountain climbing.
Time. Turns out disabled people work and have social commitments, go figure. Finding the time to train to a high level isn’t easy.
Location. I’m telling you now that even from a UK perspective a disabled person in London has a better chance of finding a local accessible gym than a disabled person living in the rural Scottish highlands.
Opportunity. It’s great that some people know the right people or get lucky with charity support, but they are the exception to the rule.
Disability, yeah I went there. An amputee with running blades may well be able to run 200m. I, as a non-amputee with chronic pain who cannot walk 30m without being sick simply cannot run 200m, and as it stands will not be able to run 200m in the foreseeable future. I could do it in my wheelchair but that’s not the message. The message is that just using a wheelchair isn’t good enough, you need to go beyond that to be “normal” and to fully overcome disability.

These pictures often forget that disability is a social not medical construct.
Most of us, the UN included subscribe to the social model of disability or a variant of that. The social model states that disability is the result of having an impairment in an inaccessible society. In simpler terms it says being an amputee isn’t what disables a person, it’s not being able to access good prosthetics, wheelchairs, aids, adaptations, education, employment and health care. It’s living in a society that on a institutional level thinks disabled people aren’t as capable, moral, ‘normal’ as the rest of us. These pictures forget that to be in the position the young boy is, running on a good track, with expensive running blades one has to have a certain amount of social privilege.  As this article explains, blade running isn’t the reality for most amputees.

Disabled people are not there to inspire you.
It may surprise you but when I personally go down to the gym, swimming pool or even supermarket I’m not doing it to inspire non-disabled onlookers and to send a message that disabled people who aren’t doing the same just aren’t trying. I’m just living my life and doing what I want to. The same way you taking a trip to the shops isn’t a statement other than “Hey, I need some milk so I’m going to buy some.”

These just feed the “super-crip” stereotype.
The “super-crip” stereotype is fairly well known in disability circles, but if you don’t know it I’ll quickly explain. When disabled people are not being held up as objects of pity (see messages like “this poor girl suffers hourly with her impairment, sending £5 will help us do what we can to put a smile back on her face”) they are often held up as “hero’s” who strive to overcome their disability. Those that “overcome” their disability by doing something that disabled people aren’t supposed to do – like sport, high level exercise, having a high powered job, smiling daily, sometimes just going outside and talking to people – are lauded as super-beings. Of course disability isn’t that simple. It’s not a case that we are all hero’s nor are we all objects of pity. We can be both or neither or, frequently, a huge mix of everything in between. Just like non-disabled people. Yes we have access issues, yes sometimes our lives have more challenges than non-disabled peoples but that doesn’t make us hero’s for just getting on with our lives. In fact by assuming it does it either suggests that you buy into the myth disability is miserable or that disabled people just aren’t as good as non-disabled people. Which brings me onto my final point…

They assume non-disabled people are better than disabled people.
The basic message is “If a disabled person can do it then anyone (and I mean anyone) can!”. Do you see people putting up pictures of Usain Bolt saying if one non-disabled person can win an Olympic gold then any non-disabled person can? No. Why? Because it would be a stupid statement to make. Clearly, given all the people who fail to win an Olympic gold every year it’s not that easy. We, as an audience, allow Bolt to have personal skill, talent and dedication to his sport above and beyond the levels the majority of us have and we celebrate him for that. We don’t feel the need to use him as inspiration porn in the same manner we do disabled athletes. Why? Because it’s hard to believe we could be better than Usain Bolt if we tried. Whilst apparently it’s not hard to imagine we could be better than a disabled athlete, because at the end of the day, on some level we simply don’t think disabled people are as good as non-disabled people.

That is why I don’t like these things. They are insulting, ignorant and they prop up damaging myths about disability.

Chronic Illness, Diet & Food

TW: Talk of diets, potential weight loss and eating habbits


My BMI is over 30 for a couple of reasons;

  1. I am insulin resistant as a result of PCOS, it makes gaining weight really easy
  2. Because of issues with my digestive system I will frequently go a fortnight where I really struggle to keep any food down which puts my body into starvation mode and slows my metabolism  Then when I can eat again, even if it’s just a little, I put on loads of weight (usually more than I have lost) as a direct result. 
  3. I’m not naturally skinny, never have been and that’s fine by me
  4. I would rather be happy and “overweight” than subject myself to the misery making cycle of diets & self-loathing society keeps directing me towards
I’m pretty happy with my body and my weight. Possibly more so than a lot of people raised in our slender-obsessed society. Unfortunately practically every time I visit a health care professional I have to be weighed and then lectured about my BMI. Regardless of how good my waist to hip ratio is or any other indicators of health. It wasn’t so bad before I became disabled, I didn’t see doctors often enough to care. Now I do see doctors a lot. I think it’s safe to say I’ve had more NHS appointments in the last 4 years than in the first 25 years of my life. 
I’ve hit a point where I’m too tired to fight it any more. The crushing pressure has become too much and given my other health issues it’s just too much extra for me to keep battling on against. I have grudgingly agreed to see the local “Weight Management Services”. Not because I want to loose weight but because I don’t want to spend over half of every appointment I attend talking about my size. I’m sick of it now and I really don’t have the energy to keep fighting them. So as of today I begin a very restrictive 1000 calorie per day diet. Now at 6’2″ I’m told that I should need over 2000 calories just sitting still so I imagine this will have the desired effect. I needed to have a blood test first to check it was suitable for me so I wouldn’t try doing the same unless it’s prescribed. I’m really upset with myself for agreeing to do it. I just keep reminding myself that this is why feminism & fat acceptance are so badly needed.
To try and turn this negative in to a positive I’m going to try and think about body image, weight, normalised health & beauty standards, feminism, disablism and the intersections between them. I’m also going to try to look critically at how people react to the news that I’m starting a “diet” because I suspect that there will be a lot of societal re-enforcing with regards to the “virtues” of weight loss and I’m interested in seeing first hand what it’s like. I also want to see if it effects how doctors, other professionals and strangers view my disability.
I will not talk about how much (if any) weight I loose. I will not extol the virtues of weight loss in my writing, I thoroughly believe in the Health At Every Size approach. I will try to place warnings at the top of posts so that people that want to avoid this stuff can.
I’m talking about this because as we have known for years, Fat is a feminist issue and needs to stay a feminist issue. I think it’s time to talk about how this issue intersects with disability. Many of us have bodies that often already don’t fit the societal “gold standard” of normalised health & beauty, our limbs may look different, we may not be as symmetrical as society would like us to be, we may have higher or lower BMI’s than society says we should have, some of our bodies aren’t as “under-control” as others, we may just simply not look as “healthy” as many non-disabled people. As a result we frequently are made too feel unattractive,  undesirable, morally lax and sometimes just plain grotesque, you can read a bit more here and here. We are also a group of people who often engage heavily with health services which higher exposure to government initiatives to police/concern troll body size & choice on top of it all. There is a lot more to be said on this topic but I’m not able to do it today. I’d appreciate reading your thoughts in the comments or on twitter before I write another post on this subject.

BBC Ouch Podcast

I took part in a BBC Ouch podcast along with the lovely Hannah Ensor of Stickman Crip’s fame (who has a great taste in blog themes by the way). We chatted about welfare and social media and if you’d like to have a listen you can find it here: http://www.bbc.co.uk/blogs/ouch/2013/04/ouch_disability_talk_show_96_s.html 

Is Resistance Futile?

The 1st of April has been referred to as Black Monday by many campaigners  Over the next couple of weeks we will see many of the changes outlined in the Welfare Reform Bill (WRB) come into effect;

  • the Bedroom Tax, Universal Credit starts being rolled out, 
  • Disability Living Allowance (DLA) is being abolished and replaced by Personal Independence Payments (PIP), 
  • Legal Aid stopped being available for welfare matters, 
  • Benefits will only be uprated by 1% for the first time, 
  • Council Tax Benefit is now being controlled by local authorities and many are reducing the assistance given, 
  • the Benefit Cap hit’s in limiting all benefit payments (including housing benefit & child benefit) to £500 per week 
But… the 50p tax rate is being abolished so millionaires get a tax break. PHEW. Not all bad then.
All in all it can feel pretty bleak. Stuff like this can easily lead to people feeling; depressed, like they don’t have a voice, like no one is listening, apathetic, like fighting is pointless, angry, frustrated and bitter. All those feelings are totally valid reactions to what is happening. A point I would like to make is that these kind of policies are in part designed to make people feel that way. Like there is no point struggling against them any more, that (to borrow a Star Trek quote) resistance is futile.
I say sod that. 
We have come a massive way in the last decade and our campaigning power is still building. Social media and the internet brought us all together, many of us who up until then had felt isolated and alone. We shared stories, offered support, nattered about spoon theory and developed friendships. We talked about our experiences with welfare, prejudice, access to health, access to housing and access to work & employment. We started to see that we were not alone when Atos & the DWP declared us to be fit for work against all medical reason. We were not alone in struggling to access transport. Many of us started to see first hand that there are injustices in the world that effect us all. Then we got angry about it. That anger fulled a desire to challenge and change society. Unhappy with the representation that had been given by politicians and charities a new surge of grassroots activism developed.  
Now when reforms happen that will effect us thousands of disabled people swing into action to make sure the largely non-disabled media remembers us. We write reports. We read and analyse reports. We lobby MPs and local councillors. We talk on the TV and radio, not asking for pity but calling for society to be better. We look beyond our own backyard and talk internationally. We blog, we tweet, we raise awareness, we campaign, we talk, we act. 
I went to a mini-conference run by the Labour party in Birmingham. I asked a question which included some criticism of Atos and the whole ESA process and people gave me a round of applause. When I said “Atos” you could hear a collective “Ugh, they are terrible” style groan from the audience. I wasn’t in a room of disability rights activists, I was in a room full of people from all walks of life yet they knew what Atos was and what it means. That’s amazing! In 2009 if I said Atos to a room full of strangers hardly any ever knew what I was talking about, now most do. We did that! Our awareness raising is clearly working. In 2009 there were no stories in the news about the effects of anything from hate crime to ESA on disabled people, now there is. We did that! In 2009 I rarely heard other civil rights groups, like feminists for example, talking about intersectional disability matters, now they do. Our rising profile has done that. 
Fighting for societal change is a long game and takes time. Sadly the chances that one petition or one campaign will dramatically alter the socio-political landscape are pretty slim. That said, lots of petitions, lot’s of campaigns  not giving up and not going away can. So without further ado, for those who want to keep fighting I’ve got some ideas for you. I’ve tried to include a range of things that are accessible to most people.

Want To Do Your Bit To Change Society?

Well, here are some ideas for those who want to do activism/campaigning work – especially around disability issues – but are not 100% sure how to go about it or how best to get started.

Get a Twitter account – a lot of campaigning springs up on sites like twitter, if you want to get involved getting a twitter account can be very handy. You can tweet ideas, links to information, jokes & pictures to keep peoples spirits up, you can simply send occasional supportive tweets to other campaigners to inspire them to keep going. Be careful not to spam people though, most folks don’t like getting impersonal tweets and twitter will suspend your account – in fact, read this post by LatentExistence.

Start a blog – sites like blogger and wordpress allow for the quick and easy production of blogs. People, whoever they maybe, like to read peoples stories. Twitter only allows for 140 character posts, which can make explaining the importance of a cumulative impact assessment or your experience of a work capability assessment (WCA) pretty hard. Being able to link to a blog post you’ve written on the subject is invaluable. Once you have a blog you can use platforms like Facebook, Twitter, G+ and others to spread the word. You can do lots with a blog, some examples are;

  • Posting your stories
  • Posting your pictures/art
  • Posting template letters so people can copy them & send them to politicians (see the next section)
  • Posting lists of lots of different pre-written tweets on a theme so that people can copy & paste them onto twitter if you are doing a big action
  • Updating people with your progress
  • Explaining complex ideas
  • Introducing people/concepts
  • Celebrating success!
  • Giving readers a chance to talk/feed back via comments
  • Keep all the important information about your work in one place
Contact your MEP (Europe wide issues), MP/MSP/MLA (national issues) or Councillor (local issues) –  Firstly you need to find out who they are! I like to use writetothem.com, you can just enter your postcode and it tells you who they are and allows you to send them an email. These people are human and often (unfortunately) ignorant of or in denial about disability issues, so trying to be polite and making sure you explain the points you want to make can be very helpful. You should also try to ensure that you contact the right people. Your local councillor doesn’t have a say in the House of Commons, nor does your local MP have a vote in the local council. If you want to talk about national government policy then talk to your MP. If you want to talk about how local services are being run then talk to your councillor(s).


Contact newspapers – Journalism is less the sleuth style investigative journalism these days and more the publishing of stories that are sent to papers. If there is something going on that needs exposing then there is little point waiting for a journalist to come to you, you really need to go to them. Sending an email, tweeting them a link to so information or giving them a phone call can work wonders. Did you have a shocking experience at a WCA? Contact your local paper and give them the scoop. Think that they’ve not covered a story from a disability perspective? Contact them with details about why it would make a good story. Have you done a report? Write a press release (around 250-500 words explaining what you’ve done, what you’ve found, why it’s new, why it’s important and what your contact details are) and send it to local journalists. You can also send these things to national papers too. How do you get in contact with a paper? Well, if you go to your local papers website they will normally have a “Contact us” section, if you can’t see it use the webpages search function. My local paper is the Birmingham Mail and they have information on how to contact them & send a story at the bottom of the home page. If you click these links you can get details for the Guardianthe Independentthe Mirrorthe Sunthe Times and the Telegraph. Do try to remember that there can be negative as well as positive consequences to giving your story to national papers. You can also contact other news outlet too, like the BBC, Sky and Channel 4 news.

Take part in TV & Radio phone ins – If you hear that the radio station or TV show you are watching wants to take calls/emails/tweets/comments about a subject you are campaigning around why not give them a call? You might get 2 mins to get your point across to a wider audience. If you don’t feel up to doing it personally maybe you could share the information with others who might do it instead?

Join a political party and lobby from the inside – For example, if you want to see Labour develop better policies with regards to disability then one way of doing that is joining the party and lobbying for change. You’d get a vote on policies, you’d be able to meet other politicians and explain why some ideas they may hold about disability are possibly inaccurate and you could even try to arrange to talk at party conferences.

Talk to your friends & family – Let people know what’s happening, challenge them (politely) when they say things like “You don’t have to be worried, only scroungers will be effected”. Don’t go over the top, people tend to start avoiding you if all you do is rant at them about politics (something I wish I’d known at 24!). Try to be as polite as you can manage. If someone is insults you then you have every right to be upset, offended and angry at them. But try to bear in mind that many of these people are just repeating hear-say and media spin because these myths haven’t been effectively challenged. If you shout at them for saying benefit fraud is really high chances are they will get defensive and you’ll just end up having a fight and getting nowhere. I get the tone argument  and I really do hate people saying “I know he just insulted you a lot but don’t be angry” it can feel invalidating and silencing. At the same time we do have to remember that if you want to argue effectively and win someone over to your cause then you are more likely to stick around to listen to you if you are not actively insulting them. This post covers my point better than I can manage right now.

An important thing to remember is that preaching to the choir isn’t always very helpful. Five disability rights activists agreeing that PIP isn’t great may feel nice but doesn’t actually help spread the word or do anything to challenge the status-quo. When you are raising awareness have a think about the people you want to be talking to and the people you are actually talking to. Often you’ll find they are different and you’ll need to look for different ways of approaching them.

Join up with a grassroots group of activists – There are loads of groups out there campaigning for change and I think they’d all love more help. Here are just a few off the top of my head;

Create a campaign – if there is something that’s not being covered then by setting up a simple blog along with a twitter account and facebook page with links to writetothem.com (to email politicians) and a petition (on a site like Change or Avvaz or even a government e-petition) you have the start of a great campaign. Remember to include contact details if you do!
Lobby other civil rights groups – plenty of disabled people are also women, LGBTIQ, children, non-white British, and a whole lot of other things too. Remind feminist groups that they should campaign for issues the effect disabled women, remind groups campaigning for ethnic/cultural/racial rights that they should be campaigning for disabled people too. The easiest way to do this is to join them and ask them what they are doing for disabled members – be sure to bring suggestions for improvement with you!
Use your artistic side – if you can make clothes, art work, cartoons, web comics or write stories do so! A painting can express more than 10 blog posts, a light hearted webcomic can draw more visitors & raise more awareness than a petition if done well. A quilt displayed in a supermarket or town hall can raise a lot of awareness.
Be seen – put yourself out there, online or offline. People assume only 1 in 100 have a disability because so many of us stay quiet about it or aren’t visible. By simply “being” you raise awareness.
There are a whole host of other ways you could campaign too – be imaginative!
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