Archive for the ‘ feminism ’ Category

At The Intersection: Down’s Syndrome & Abortion

Picture of a girl with Down’s Syndrome

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

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

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

#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. 

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.

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.

What Is "Intersectional" Anyway?

I imagine that if you are reading this you identify either as a feminist, a disabled person* or as an ally of feminists and/or disabled people and you might have heard the term “intersectional” or “intersectionality” used when talking about peoples rights. It might sound a bit academic, but the principle is fairly simple and extremely important so I’m going to attempt to explain it in this post.

In a nutshell: 
People are oppressed for a variety of different reasons such as disability, gender, culture, sexuality & race. There is a lot of overlap between these oppressions; we call the areas of overlap intersections. Someone who campaigns for disabled peoples’ rights in an intersectional way is aware that there are lots of disabled people who are not heterosexual, cisgendered, white men and that they will probably be living with more than one kind of oppression. Many people, myself included, believe that it is very important to remember intersecting oppressions to make sure that our campaigning is as inclusive of everybody’s needs as possible.

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A very simple venn diagram showing some intersecting circles of oppression including gender, disability, sexuality, nationality & race.
In a bit more detail:

If you are a disabled person or an ally to disabled people I assume you will be no stranger to the idea that our society is, at it’s core, disablist. The majority of people in positions of power are non-disabled and this is in a large part because disabled people are still routinely silenced, dismissed, ignored or refused access to the necessary tools to be able to communicate meaningfully. They are frequently excluded from politics, from decision making and from society as a whole because of damaging and deep seated idea’s about what disability is or means. It results in a large gap in pay, employment prospects, education, access to health care and access to independent living between disabled and non-disabled people. The power gap between disabled and non-disabled people is frequently abused and results in disability related hate-crime, abuse & harassment whilst the successful prosecution of such crimes remains woefully low.

If you are a feminist or an ally to feminists then I assume you will be no stranger to the concept that our society is still very sexist. The majority of people in positions of power are male and they decide what media we consume, what policies we follow and how our laws are applied. Sexist stereotypes brand men as strong, powerful, aggressive, logical and confident and women as weak, passive, caring, guided by emotion and small and they have damaging effects on men & women alike who do not fit those very constraining moulds. There is a large gap in pay, caring expectations, attainment and employment & educational choices between women and men. The power gap between men and women is frequently abused and results in statistics like 1 in 4 women being domestically abused in their lifetime, 1 in 5 women being sexually assaulted or stalked whilst the chances of getting these crimes taken to court is still low.

I would hope that it doesn’t come as a shock when I now say that as well as people being discriminated against because of their gender/gender identity (or perceived gender) or because they are disabled (or perceived to be disabled) are also discriminated against in remarkably similar ways because of their race (or perceived race), age (or perceived age), sexuality (or perceived sexuality) and beliefs (or perceived beliefs).

We can also see that where there is an overlap of identities (or an intersection of identities) people face extra discrimination. I will take the example of disabled women quickly to illustrate this point. Disabled men get paid on average 11% less than similarly qualified non-disabled men doing the same job. Disabled women get paid 22% less than disabled men when doing the same job**. They effectively take one pay cut because of disability, then another because of gender. Disabled women are more than twice as likely to experience domestic/intimate abuse than non-disabled women.

When human/civil rights campaigners talk about taking an intersectional approach they are talking about remembering that there are other forms of oppression active and that these need to be taken into account. It is important to remember that when talking about women’s rights that many of those women will also be one or more of the following; disabled, working-class, black or minority ethnic (BME), lesbian, gay, bisexual, trans*, intersex, queer (LGBTIQ) and/or hold cultural & religious beliefs that differ to the ‘norm’. When women’s rights campaigning ignores those areas it is complicit in further marginalising these women on the basis of their other characteristics.

Intersectionality is not about who wins the “most oppressed” award, nor is it about derailing or silencing conversations. The joy of intersectionality is that it raises questions for everyone and widens the scope of conversation, debate and dialogue. It is a tool which can be used to improve campaigns, make for a far more inclusive environment and to remind people not to assume that everyone has an equal and shared background. I don’t know about you but I personally don’t want to see advances in feminism that set LGBTIQ people back in their fight for equality and nor do I want to see advances in disability rights that ignore the reality of sexism that the people it represents experience.

I’m going to stop there. Hopefully that has given a basic introduction to the concept and hopefully it will have made some sense.

* In this post when I talk about disability I am talking about people who have an impairment and are disabled by a society that oppresses them as a result. My definition of disability includes long term sickness/illness and conditions like HIV.
** See Longhi,S. and Platt, L. 2008, Pay and equalities areas. Research report 9. Equality and Human Rights Commission. Also covers pay gaps with regards to other protected characteristics.

The Denial Barrier & It’s Effects On Activism

Since really starting to make a push with human rights activism I have kept coming up against the same barrier. A rather specific form of denial, the denial of ones mortality, which is something hardwired into nearly all of us. It’s something I really want to talk about but I’ve not been really sure how to approach it. After a bit of an email to and fro I’ve decided to just type out my thoughts in the hope it goes somewhere useful.

The denial of mortality (or Denial of Death as written about by Ernest Becker) I’m going to try to explain what I understand of this concept now, bear with me, I’m not a Psychology student but I’ll do my best. The general idea is that people’s minds, for their own protection, work hard not to think about our own mortality. Where we all know on some level we are going to die it still doesn’t really sink in. A large part of many of us thinks death is something that is a) a long way off, b) happens to other people, c) is totally outside of our control (so there is no point worrying about it) and d) can be avoided by taking precautions.

Psychologists talk about a cognitive barrier set up to protect us from the damage to our mental well being that can occur when we realise just how fragile our existence is. As someone with PTSD with a lot of acquaintances with the disorder I regularly see first hand the ‘damage’ the trauma of being exposed to your mortality can do to ones sense of self. In many ways this barrier is a good protective force. Without it leaving the house and/or talking to other people would become so anxiety provoking our lives and independence would suffer greatly.

This defensive barrier is denial in the psychological sense which manifests in the following ways;

  • It produces a desire to ‘minimise‘ the danger by acknowledging it is out there but telling us it’s not really that big of an issue it needs thinking about/ dealing with.
  • It tries to ‘rationalise’ the risk by reassuring those listening that there is a good chance it won’t be them (which feeds the minimisation) or by working out rules to keep us safe (like not wearing short skirts if we want to avoid rape or driving carefully to avoid disablement via car crash).
  • When someone tells us an uncomfortable truth it causes us to ‘project’ our feelings of disquiet onto them, so we can tell ourselves they are not worth listening to.

 
The issue is that this ‘denial & minimisation’ of our mortality seems to extend to a lot of causes close to my heart. Disability and women’s rights being two big ones. I’m sure there are intersections with other civil rights struggles too, but as I don’t know the areas well I don’t feel equipped to comment.

Disability & Denial

In the UK today the majority of disabled people become disabled after the age of 18, 1 in 5 people of working age and 1 in 2 people aged 65 are covered by the DDA (Disability Discrimination Act). You’d think those kind of figures would make it pretty overwhelmingly apparent that we will all be touched by disability in our life times, yet most non-disabled people still believe that disability happens to other people or that it is something that can be avoided.

Becoming seriously sick (like developing cancer) or being maimed (loosing the use of limb(s), organ(s) or whole sections of ones body) is not a pleasant thought for most people. For many it mentally equates with being given a death sentence. As a result people’s minds minimise the likelihood of it happening to them. The same seems to happen with other illnesses and serious accidents that could lead to disablement. People just don’t want to think about it. Not because they are callous or uncaring, but because, in many way they are wired that way. It’s the force that tells people disability is sad, just too depressing to think about. It’s the force that helps make people feel awkward and change the channel when faced with a advert trying to raise awareness about an important issue. It’s part of the force that champions the ‘just world fallacy’ which makes people assume that disabled people were either born that way or became disabled through reckless or immoral behaviour. It’s one of the reasons why people the idea that most people who say they are disabled must be lying sits so comfortably with people – that way the chances of actually becoming disabled/chronically sick/terminally ill are minimised once more. It’s a huge barrier for the disability rights groups to cross because until currently non-disabled people start paying attention to disability rights and taking our desire for rights not charity seriously we find ourselves less able to make gains.

Feminism & Denial

It’s not just with regards to disability either. Currently 1 in 4 UK women will experience domestic violence in their lives, over 1 in 5 will be sexually assaulted and between 1 in 6 to 1 in 10 (depending on stats used) will report being raped. Still, most women who have not already been the victims of these crimes don’t expect them to directly impact on their lives or they think they can behave in certain manners and avoid the issue.

I regularly read blog posts from feminists telling of their shock when they were abused by someone close to them and that being a feminist didn’t serve as a shield/radar. Many of these stories all have an uncomfortable touch of “I behaved in ‘x’ manner so I thought it wouldn’t happen to me”. These people were familiar with the statistics and the forms abuse can take but on some level didn’t think it was ever going to happen to them.  I’m not going to list all the ways denial makes getting the message out about gendered abuse, harassment, assault and horrid acts like Female Genital Mutilation difficult. I’m sure you’ve got the picture by now.

Dealing With Denial

Even though we can’t get rid of this barrier (well, not without harming the person we are trying to raise the awareness of) we can acknowledge it’s existence. By knowing it is there we can try to challenge it when we run into it. By understanding it’s a protective force existing within many (if not all) of us we can try to be more patient with people being influenced by it. By talking about it we can hopefully find more productive ways of engaging with our audience. We can also try to see it in ourselves when we jump to conclusions about someones personality or take a dislike to someone telling us things we don’t want to hear. If we can’t challenge it in ourselves we have no right to expect other people to do the same.

Intersect Confrence 2012

This Saturday I got up (way too fucking early) to drag my carcass down to Bristol so I could talk at a really exciting conference called Intersect. The conference was a celebration of the intersectional values of third wave feminism. Too often feminism is rightly criticised for focusing primarily on the needs and values of privileged white, well educated, middle class, non-disabled, cisgendered, western, heterosexual women. Intersect was a chance to challenge this and turn the traditional discourse on it’s head.

The symbol used by many feminists, a circle with a cross at the base and a clenched fist in the centre. Depicting the struggle for women’s equality.

In speaking I was joined by the following fantastic activists;

  • Nimco Ali from Daughters of Eve, a group working hard to raise awareness about Female Genital Mutilation (FGM), support survivors lobby for it’s end.
  • Becki who blogs at Broken Single Mum wasn’t able to be physically present but she was able to share her touching story of disability, domestic abuse and becoming a single parent.
  • Two anonymous women from Women Asylum Seekers Together (WAST) came to share their heartbreaking experiences of leaving thier homes and living as asylum seekers in the UK.
  • Transfeminists Ariel Silvera of BoLT magazine who video blogs here (link to youtube) and Paris Lees from Transmedia Watch and MetaMag gave a great talk on issues surrounding transfeminism and trans* rights.
  • The whole event was the brain child of Nat from Forty Shades of Grey (the blog, not the book) and chaired by the feminist comedian & writer Kate Smurthwaite.

My talk was on the UK disability rights movement and its intersections with feminism. Knowing that many of the audience would a) be unfamiliar with the challenges disabled people in the UK face, let alone with the intersectional issues and b) would probably hold plenty of ideas about disability based on stereotypes and media myths I had quite a lot to cover in a rather short space of time (under 30mins). I think I managed to cover the basics of a lot of issues but plenty got left out because of time constraints, complexity and my nerves affecting my memory. I also started to run over so the last sections were very rushed. Still, I think it went well.

The rest of the day was really fun, thought provoking and bitingly relevant to modern third wave feminism. I met some fabulous people and I hope I manage to keep in touch with some of them into the future. I hope this won’t be the last conference flying under the Intersect banner, our feminism needs more focus on intersectionality.

If you would like to see or read a recording of the talk you can either watch it below or read the transcript (provided for Intersect by @socialamelia from Silence Cupcake). You can also see these and other transcripts and videos from the other brilliant speakers at the Intersect website.

Video of the talk, apologies for the poor sound quality in places.

Transcript

Kate: [speaking, chatter and laughter in background] register later…and anyone who hasn’t shown up for the requisite number of minutes will be given lines afterwards.
So we’re going to move on to the next section of the programme and we’re gonna hear, well, we’re going to hear about disabled women’s rights. I’m not going to try and pre-empt what’s going to be said, because I actually don’t know what we’re going to hear about, in much more detail than that. But I’m going to sit up here, and keep an eye on things as we go, so could you please give a very warm welcome to Emma Round.

[Applause]

Emma: If you bear with me whilst I manoeuvre.

Hi then, well hello! I’m Emma and as you can probably see I’m a wheelchair user, and that stems from a lot of abdominal nerve damage that’s been done over the last decade or so, but all of it started with a simple thing, appendicitis of all things. And what you can’t see is that I’ve also got post-traumatic stress disorder as well. So when I’m speaking to you today I’m not just talking to you from a physical disability standpoint, it’s also a mental disability standpoint as well.
Now, I’m telling you this, not because I want your pity, not because I expect your pity or anything like that from it, but because I want to try and raise awareness that anyone, anybody in this room even if you don’t think of yourself as disabled currently, can become disabled. Actually, you probably will. In today’s Britain, if you look at all the 65 year olds, one in two of them are covered by the Disability Discrimination Act. One in five working age adults are covered by the Disability Discrimination Act. Even if you don’t think of yourself as disabled currently, changes are you will be, or someone extremely close to you will be, and you’ll be dealing with it as some stage in your life.
There’s a myth that the majority of disabled people are born with disabilities, but that’s not actually the case. In fact the vast majority of disabled people in the United Kingdom becomes disabled once they pass the age of eighteen. That’s something that’s always really important to bear in mind. I want to impress just from the start that disability is everywhere, and it is everybody’s issue.
So, that bit over, today I want to outline what I’m going to talk to you about. First I’m going to start of by giving a quick primer on disability language and how we talk about it in the United Kingdom, as opposed to the United States. Then I’m going to move on to problems faced by disabled people in general, and I’ll focus a bit more on problems faced by disabled women. Then I’m going to talk to you about current issues in the disability rights movement and finally I’m going to finish off by talking about feminist spaces and access, and explaining why access is important for everybody.
Okay then, so if we start off with this little primer. There are two big models when it comes to thinking about disability; there’s the social model, and there’s the medical model. The medical model says: Emma Round’s got nerve damage and because of her nerve damage, she can’t get from A to B. So Emma’s disability is her nerve damage.
The social model, on the other hand, comes at it from a different point of view. It says: Emma Round’s got nerve damage, but because she’s got a wheelchair, that should be enough to get her from A to B, that more than compensates for it. But because of poor civic planning, because they put a step in the way, they’ve not built a lower kerb, that’s what disables me. And in the U.K we heavily focus, and we’ve fought for years to focus on the social model, so you won’t hear us talking about people with disabilities, you’ll hear us talking about disabled people or disabled women, because we don’t want to make it sound as if the disability is something to do with the person, the disability is a societal issue. You’ll also hear us talking about disableism instead of ableism, as some of you might have heard, and you’ll hear us talking about non-disabled people rather than able-bodied people. This is because the able-bodied thing puts the slant that disability is a very physical thing, it ties in to the stereotype that all disabled people use a wheelchair, and that’s actually not very helpful when it comes to battling for disabled people’s rights.

So with that out of the way, I’m going to have a quick look at some of the problems that disabled people face in the United Kingdom today. Now I just want to quickly start by saying disability rights is an absolutely gargantuan field, it’s hugely intersectional; there are massive intersections with race, with class and so on and so forth. But I really don’t have time to cover it all in just under half an hour, so you’re going to have to bear with me when I only focus on the intersections between disability and women’s rights today.

Now, disableism is the assumption that everybody you meet is not going to be disabled. That they are going to be a non-disabled person. And it’s also the marginalisation and the othering of disabled people that comes along with it. And this is done through unhelpful stereotypes, and making disabled people invisible from the general discourse. And this has huge effects on disabled people in Britain. For example, if you look at employment just to start with, there’s a pay gap where a disabled person can expect to earn between six and twenty six percent less than an able-bodied ” sorry, non-disabled person. Say “don’t say it!” and it’s the first thing in my mind. [Chuckles from audience] I apologise. And then if we have a look at disabled women in particular, in comparison to a non-disabled women I can expect to earn twenty-two percent less. And we already know that non-disabled women have a huge pay gap. And this isn’t just because of disability. If it was, we’d expect a pay gap of twenty two percent when it came to disabled men in comparison to non-disabled men, but it’s not, it’s much lower, it’s half of that in fact, at eleven per cent. It’s pretty huge, and I mean, this isn’t something ” this is something that’s still currently going on. If we look at 2011 for example, seventy seven point five per cent of non-disabled people managed to find themselves work, only forty eight point eight per cent of disabled people did, in contrast to that. And of course this isn’t all about finding work either, when we look at employment, it’s about keeping work. As I said at the start, lots of disabled people, or the vast majority of disabled people become disabled after the age of eighteen, whilst they’re working. But, if we look at after a year in employment, eighty per cent of people that have become disabled whilst working for a company managed to keep their jobs. That’s twenty per cent fall out of employment. After two years, only sixty per cent manage to keep their job. And after three years, that goes down to just thirty six per cent of people. And our employment rates are very, very low as well, like less than one in five people with learning disabilities manages to find employment. About one in ten people with mental disabilities. And so on and so forth. I mean, we want to ask ourselves why this happens.

And there are a couple of reasons, you’ll hear me talking about these two quite a few times. There’s direct discrimination, and then there’s indirect discrimination. Direct discrimination is when people make assumptions regarding our capabilities and our backgrounds. They see a disability, they don’t see a person. And there’s also, it ties in with the unwillingness, or just simple lack of knowledge, about things like the Disability Discrimination Act, what reasonable adjustments are, or just how to go about getting funding for them. And then there are things like indirect discrimination, which is a lot more pernicious, and often isn’t talked about so much. And that’s when companies do things like linking performance pay and promotion opportunities to people’s ” oh, where am I, sorry, mind gone blank ” to either people’s ability to work lots of overtime, to work long, long hours or, horrendously, for people that have low levels of absence. Which makes it really, really difficult for somebody with disabilities who’s going to need a lot of time off or can’t manage to do long hours, and so on and so forth, to progress within a company. It also comes in when there are restrictions to part time working, flexible working and home working within businesses. And I’m sure you’ll see parallels between that and the women’s rights movement arguing for the advancement of the same.

And this sort of lack of employment opportunity, ties in to poverty and disabled people’s financial situation. In the U.K, at the moment, depending on where you live, between twenty-one and thirty-three percent of households with a disabled person inside them live below the poverty live, in the United Kingdom. And that’s because disability is really expensive. Taxis, lovely wheelchairs [pats wheelchair], they don’t come free of charge. Adaptations to your house. Personal assistants or carers, depending on how you want to talk about them, all cost money, they don’t just appear free of charge. And the amount of financial help we get to try and offset these problems is actually quite limited. People think automatically: charities! Why don’t you go to a charity if you need a new wheelchair, or so on and so forth. Charities don’t tend to hand out new wheelchairs, they don’t hand you a cheque every month for a hundred pounds to make up for the extra costs of being disabled. They tend to be more there in an advisory capacity, or perhaps to give selective care in the community or running refuges or so on and so forth.

And then we look at local authorities and social services, but they’re a bit of a postcode lottery. There’s no nationalised standard that seems to come in to effect. My local council, for example, doesn’t like to give money to disabled people who’ve got friends or family that can potentially care for them which increases dependancy upon those people. My local council won’t give me a wheelchair ramp, so I can get my wheelchair in and out of the house on my own, because it’s not necessary enough. These sort of things all tie in to this postcode lottery, I’m sure if I perhaps lived in a more affluent area, or with a different council that perhaps but a greater emphasis on adult social care that might be different.
If we move away from local authorities, we’re left with welfare after that. We look at things like employment support allowance, the new name for incapacity benefit, which now comes with annual tests for an awful lots of us, where we go and are assessed by an independent company called ATOS, who are a huge bugbear of the disability rights community. They’re heavily criticised, because seventy per cent who go on to appeal their decisions, with legal help, or forty per cent of people who go on to appeal their decisions without, have their cases over turned, and are then awarded disability benefits, which they wouldn’t have been awarded beforehand. They’re a huge problem ” I’m not going to go into that so much now, because I could talk about that for hours. Then there’s Disability Living Allowance, which is something that people don’t tend to understand too greatly. It’s a non-means tested benefit, which is supposed to be there to all disabled people to make up for the extra costs of living in Britain. A disableist society. But it’s very hard to get hold of it, you actually have to be quite severely disabled to start with.

When I first applied for it, they told me I wasn’t disabled enough and didn’t have the needs. It took a long time, well, eighteen months of appealing to get them to admit that actually, it is a bit more costly when you’re a wheelchair user to get around. And all of this works to enforce dependancy, on people, on family and friends. Which is a huge problem, and this is where this becomes predominantly a women’s rights issue. Because the people who end up caring for disabled people, and who tend to end up being responsible for looking after them are disproportionately women. Carers either from within the family, or employed by the state are normally female. They also tend to work extremely long hours, they have a huge lack of social support and they tend to work in a very challenging role for very little pay. If you’re receiving carer’s allowance, you get a whopping great fifty five pounds per week, for your twenty four hours a day, seven days a week care for somebody who must be, who will have to be getting Disability Living Allowance, so who is quite profoundly disabled.

I mean if we move away from just carers, if you have a think about disabled women for a moment, there’s a huge power imbalance when disabled women become dependant on their partners and their families to look after them, especially when those partners are male. We talk about one in four women being subjected to domestic abuse in the U.K, well, one in two disabled people are subject to some form of abuse at home; be it, emotional, financial, physical or sexual. If you look at women, that figure rises even more. It’s terrifying. And there is a huge, huge lack of research being done in that field. And it’s really, really hard for disabled women, especially if they’re in an abusive situation, to get out of it. Imagine that you can’t communicate easily with other people, but the person you rely on to do your communicating for you is the person stealing your money, is the person berating you day in and day out for being a burden, for being too much hard work. How do you get out of that situation? How do you contact the police if you can’t leave the house, if you can’t run away without assistance? If the council trusts that person to be looking after you. It’s…oh, it’s horrible.
And I mean, to move on, there are other issues around sexuality; there’s always this stereotype that disabled people are pretty sexless, that we don’t enjoy sex, which is just complete rubbish in most cases. Of course there are asexual disabled people, and there are disabled people who aren’t asexual, just like with the rest of the population. But at the same time, there’s this other rather extreme position that tends to get ignored, in which disabled women, in particular, tend to get fetishized by certain minority groups. And they tend to objectify and dehumanise these women, and be extremely threatening in many cases. Quite happily following you around town, trying to grab a feel if you’re not looking particularly well, because they think it’s their right, it’s the patriarchy in action. And then there are huge issues around reproduction. From forced sterilisation and the horrible pillow angels cases that have been coming up recently, consent issues, fertility issues, being able to access fertility treatment, support for disabled parents, the way that social services tends to be involved from day one with a disabled parent because there’s this assumption that we’re not safe to leave children with. That all needs challenging.

And that’s not even going on to body image issues, which come about when we normalise the perfect appearance and the perfect personality, being that of somebody who’s non-disabled.

A very, very quick nutshell of some of the big issues going on in the disability world, if we look at what’s going on currently, it’s disabled people fighting for their basic rights to live. Over the last fifty years, we’ve made some huge leaps forward in the United Kingdom. The social model has been much more widely accepted, Disability Living Allowance has been brought in which wasn’t before, the Disability Discrimination Act came into effect, the Equalities act in 2010, and all through it, disabled activists have had this mantra: Rights, not Charity. Where we say, we want the right to live an independent life, we don’t want to have to survive on handouts, off pity, off very subjective charities that only deal with a very small subset of disabled people, providing funding for them. Now in 2010, the coalition came in to power over here and the Big Society started getting lauded and heralded. And there’s been this slow change from Rights not Charity to Charity, not Rights. Where the idea is we should depend on our neighbours for help, we shouldn’t depend on social services, we should depend on charities for handouts. We shouldn’t expect welfare to cover us. And it really scared a lot of activists, understandably.
We noticed a huge rise starting after that, in the scapegoating and demonisation of disabled people across all aspects of media. Horror stories about motobility; a child with a slight twitch in their finger and their parents getting a fifty thousand pound BMW free of charge, living in a mansion and having holidays paid for in Mauritius. Which is just absolute bull. But as a result, we’ve seen a huge spike in disability related hate crime, and it’s terrifying for many of us. There are groups like Black Triangle Campaign trying to fight against this at the moment. They named themselves the Black Triangle Campaign after the black triangles that disabled people used to have to wear in 1930’s Germany, and I know a lot of people are very against comparing anything to the Nazi’s, or to that period of time, but there are huge parallels to be drawn between the “useless eaters” rhetoric that Hitler used to push and their propaganda, and the Daily Mail, and The Express doing stories about “How much a disabled person costs Britain” and how they don’t give anything back to society, and it scares a lot of us.
And then last year, the Welfare Reform Bill was announced, which is where we think all of the scapegoating and things was leading to, well, quite clearly. It involves reforming Disability Living Allowance, making it harder to get. There’s a nought point five per cent fraud rate when it comes to Disability Living Allowance; it’s tiny. Yet they’re taking twenty per cent of people off Disability Living Allowance when it gets transformed into these personal independence payments coming in to replace it, which is just ludicrous. When it comes to ESA, they now want anybody who’s getting it to [?] work related activity, even though, even if you’re in a work-related activity group, or the limited capability group of Employment Support Allowance, you’ve been deigned as somebody who’s been unable to work, and is going to need time and help and assistance to get back on that horse, if you ever manage to.

They’ve said they’re going to reduce the amount of time people are going to get contributions-based DSA. This is what your national insurance payments go towards. Beforehand, you paid in for three years, you got an extra bit of money back for the whole time you were sick or disabled. Now that stops after a year. Your cancer might not go away after a year. Your motor neurone disease probably won’t either, but the payment’s stopped.
And they’re also abolishing the Youth Provision ” beforehand if you became disabled, or were born with a disability, you got DSA because it was said: there’s no chance for you to pay into the system, it’s only fair. Now you get that for one year after you’ve turned eighteen, or you’ve left full time education, and that stops.

There’s big changes to housing benefit, they’re capping the amount that goes in and they’re taxing any extra bedrooms. Disabled people’s houses tend to cost more. We need them in specific locations, so they’re close to doctor’s and services. We need them to be adapted for our needs. We tend to need a second bedroom, because that’s where our dialysis equipment goes, or that’s where our carers sleep. But it doesn’t matter, it’s still going to be taken out of us. They’re also scrapping the social fund, they’re scrapping the independent living fund. All these things are used by disabled people to try and live an independent life.
And then there are other issues, that affect everybody, especially every woman. Like changes to the child support agency, where now, if your partner leaves you, you’re going to have to pay to have them chased up; a certain proportion of your income is going to be taken out of that. And then there’s the removing of child benefit from some of the very poorest families, by bringing in the twenty six thousand pounds a year benefit cap.
Now we’ve been working really, really hard to challenge all of this, so there’s groups like the Black Triangle Campaign challenging scapegoating, Disabled People Against Cuts, or DPAC, have come together to try and oppose all these austerity measures. I mean, this January I was down in Oxford Circus with a lot of them. I chained my wheelchair across the road to stop traffic and try and get some awareness raised about these issues of which there seems to have been a media blackout. Then there was the Responsible Reform Report or Spartacus Report, which was set up by a group of grassroots disability rights activists to raise awareness and to ac as a critique for the Disability Living Allowance reform.
They found out that only seven per cent of the organisations in the Disability Living Allowance reform consultations actually supported fully the change to PIP even though the government will tell you that they were overwhelming in support. They discovered that this rise in the Disability Living Allowance that people hear spoken about is actually mainly from people being diagnosed with learning disabilities and mental disabilities, not a huge rise in people with bad backs who are just trying to fiddle the system. They discovered ninety per cent of people were opposed to the assessments being brought in for PIP, that we currently undergo with Employment Support Allowance, and so on.

Now I’m sure that you can imagine getting disabled people together, to work together, to try and form a grassroots campaign is really, really difficult. We can’t just go out and meet down the pub. A lot of us can’t just go out of our bedrooms. So we’ve found the internet has been amazingly helpful when it comes to bringing people together. Facebook, Twitter and such, have given us a voice, and allowed us to work and network together in ways that we couldn’t have done thirty years ago. It has also inspired a lot of disabled people on their own, like myself, to start taking a move forwards and doing something about it, so contacting our local councillors, contacting our MPs, contacting local newsrooms to try and get our stories out, and at the same time to try and get the stories of disabled people all over the country out and given air. A lot of these ideas have been really helpful incorporated into the women’s rights movement, as well.

And having spoken about that, I want to just quickly finish up with talking about how we can feminists spaces, so online and offline, more accessible to people; something I’m often asked about. When it comes to offline, we need to look at the two ” direct and indirect ways they can discriminate against disabled women in particular. The direct ways, so the physical access, the location, does it have ramps, is there an accessible toilet there, do you need some British Sign Language interpreter. The person might have a carer. That carer, if it’s a friend or family member, which it’s very likely to be, might be male ” how is your group going to cope with that? Is the lighting good for people with visual impairments? Is there an awful lot of surplus background noise for people with hearing impairments? Is there somewhere for people to park? There are websites like Disabled Go, for example, where you can just type in the name of a venue and if they’ve been assessed, it will give you all of this information, it will give you all the answers. There are places you can go to look to find this stuff out. You don’t have to have a degree in the subject.
But then we also need to look at things like indirect access, which is atmosphere, nine out of ten times. We don’t want to turn up to an event and be treated as some sort of curiosity. I can’t begin to count the amount of times I’ve turned up somewhere, and before anyone has asked me my name or said hello, it’s “What’s wrong with you, then?” or “Why are you in that wheelchair?” which is normally followed up by a quick explanation from me, and then some very helpful comments about how reiki cured their Mum when she had a broken ankle, so my abdominal nerve damage will be fixed by exactly the same. There’s this assumption of a lack of expertise which all comes in to the stereotype that disabled people don’t really know what’s best for them at the end of the day.

Then there’s things like there being a lack of descriptions, especially if you’re showing pictures or something like that for people with visual impairments, there being an exclusionary language used. I don’t want to go into a room hear people using the word ‘lame’, as a word synonymous for ‘rubbish’ because it upsets me. I don’t want to go into a room and hear people talking about folks being ‘mental’ or ‘crazy’ because as somebody with mental health problems I find that really exclusionary, it makes me feel really uncomfortable. And I know the same is true for an awful lot of other people. Some people don’t mind, others do.

And when it comes to on-line, the same kind of issues apply. There’s direct access, so blogs and websites and so on, they need to be something that’s accessible, they need to be easy to go through. It might be really funky to have an interesting layout, but that needs to be addressed. And also, the comments need to be moderated as well.

So that’s kind of everything, I’m rushing towards the end, but I’m looking forward to taking any questions about it, I think Nat’s got something to read out from Becky [gesturing off camera].

Kate: So, sorry, Nat, how long do you want us to take for questions?

Nat: [off-camera] ten, fifteen minutes?#

Kate: Okay, so obviously Emma’s here, so if you’ve got any questions, go for it.
[Silence, some murmuring off camera]

Question 1: What do you mean by living independently when you’re disabled?

Emma: Okay, it’s not being dependant on another person to be able to do the things that most people would take for granted. Not talking about being able to get myself out to the cinema, or go show-jumping [laughs] or something like that, but more being able to wash my hair on my own, being able to feed myself, being able to get a drink without having to rely on somebody else’s good will to get it done. To give an example from my own life, I became disabled back in 2009 and I was living in a privately-rented house, which I’m still in. Hopefully, I’ll be out of there in a couple of weeks now, but there’s stairs in it, and my kitchen is downstairs and my bathroom and bedroom are upstairs, and so I need help, everyday, if I want to go up and down the stairs. If I want to get between my kitchen and my bedroom, if I’m having a day when I can’t move, quite often I’ll go without eating, because there’s no-one there to feed me, to bring me food, or to help me, and I can’t manage the stairs safely on my own. The amount of times I’ve fallen down them is just ridiculous. The bathroom in our house, I’ve got normal bathtub with a shower over the top of it, and I can’t step over that. I can’t get myself in, and I can hardly keep myself up when I’m standing to wash my hair, so I need somebody there with me. The council, because I’ve got a partner won’t provide any care or any payment for somebody to come along there and do it, so I’m completely, in many regards, dependant on my partner for everything, and I don’t think that’s right. My life suddenly becomes completely controlled by what he’s willing to do. He’s not paid for it and because he’s a student he can’t be there all the time. He’s got his own life to lead, as well, and it leads to me feeling like I’m greatly lacking any great independence or autonomy. And that’s kind of what we’re trying to fight against. Does that help answer it at all?

Question 2: Do they then pay you for disability…

Emma: I get Disability Living Allowance which took a very long time to come through, and was a very hard fought battle and I get higher rate care and mobility, because they admitted that I needed quite a bit of help with care because of my situation. But, unfortunately, if you look at how much it costs to hire a personal care assistant, and then if you look at the seventy pounds a week I get for my care component; paying a carer seven pounds an hour would only buy me ten hours worth of care. And I don’t always know where I’m going to need that, my condition fluctuates a lot. Some days I’m able to do a lot more, and some days I’m not able to get out of bed. And I’m morphined up to the eyeballs. So it varies, you don’t know when you’re going to need to call one in. Being able to call one in at short notice is also really, really difficult. And then there are other things which that money has to go on. I can’t cook for myself because I can’t bend to get down to my low oven, and I can’t bend to get to my freezer. So, I can do a microwaveable meal, and that’s if I can get myself downstairs to the kitchen to do it, and those aren’t particularly cheap, especially if you want to try and eat something nutritious, which again, is something I tend to have to do because I’ve got a lot of damage inside my abdomen, which messes with my bowel and the like. So, it all starts adding up, and it eats away at that money in no time flat. Just to start with.
Question 3: So are you not a priority on the housing?
Emma: I am, now. I’m the highest priority, and we’re having a huge amount of trouble with this. We finally got on to the Housing register this December (2011) and we got invited to our first accessible house in January and we were so excited about it, and we got there and thought Oh this is a really lovely area and it’s really, really affordable and the lady opened the front door to the flat we were going to look at and it was a first floor one, and there was a flight of steps leading up behind the doorway [laughs. We said: Are they putting a stairlift in? And she said: Oh no, you’d have to bid on it, and then ask the Council if they’d put a stairlift in.
But because I can get out of my wheelchair and walk a couple of feet, even though it causes extreme pain, I’m seen as somebody who doesn’t need that extra support. I don’t need an NHS stairlift because I can walk two feet. [sarcasm] It’s why I don’t need a wheelchair ramp to help me get a heavy beast like this out of the big step down from my back door. Because I could step over that, even if I couldn’t go any further. I should be able to lift this [gestures at wheelchair, laughs] hundred kilogram wheelchair down as well as myself. It’s ludicrous and you don’t think that this is going to be the case when you become disabled. I didn’t. I thought I’d rock up to my GP’s surgery and they’d adapt my house, and I’d get all the wheelchairs I needed and I’d have enough money to live on and carers and [makes a circle gesture with hands] and, â�¦ it’s not the case at all.

Question 4: So you must be on anti-depressants, as well?

Emma: Um, I don’t, because of the post-traumatic stress disorder, I don’t take those but it’s a huge problem. On that side of things.

Audience member: I like your personality!

Emma: Well, thank you very much!

Audience member: â�¦ I expected you to be pulling down and want pity but you’re such a like, you know, i’m just like you…

Emma: Well, that said, and it’s kind of, well it’s really really difficult. I was Geology graduate, I was going to work doing lots of interesting geological mapping, I was going to go to Iran, see if there was gold in them there hills and these were all the big plans when I was younger, I didn’t think about the rest of the world all that much, and then all of a sudden, everything changes. And it gives you a new perspective. But at the same time, there’s a lot of room to challenge it and a lot of room to find these things. So I”m trying to do the best I can, as are a lot of other people

Audience member: [not really sure what she’s saying here]

Kate: Does anybody else have questions?

Question 5: What’s the best way of lobbying for change?

Emma: We found that putting political pressure on people is important. There’s this idea that you can keep hitting the disabled community, and they can’t say anything back, and they won’t say anything back and if they do, people will ignore them. So, we’ve been letter-writing, we’ve been tweeting, we’ve been phone-calling, we’ve been faxing, we’ve been blogging, we’ve been doing everything we can to try and raise awareness. I mean, one way which is really, really helpful and people don’t think of it as being that big a deal is challenging the really hurtful stereotypes. When you hear this ‘scrounger’ rhetoric starting and this “I know someone with depression who gets everything free of charge” and all the rest of it, saying: Really? You’ve seen them behind closed doors? You’re their doctor? Do you understand that to get Disability Living Allowance you have to send your Doctor’s details along.
I made the mistake and didn’t, and that’s why it was denied the first time through, and why I ended up in appeals for eighteen months. You don’t just get given ESA because you say you feel a bit glum, it’s extremely difficult. That’s why the fraud rates are so, so low. And it’s challenging it, and it’s challenging these assumptions about disability. And that’s just a really helpful way that anyone can do of trying to change the public discourse about it and make all of our lives a bit easier.
Question 6: What are the challenges it helps to have concrete examples. In my office, we’ve had three cases of whiplash in the last year. Not serious, these are minor injuries, but one of the women had a quick conversation with the insurance company and probably was the least damaged of the three. [mumbling] an ongoing issue which she didn’t feel was quite enough to actually deal with and one of the guys had about six months of arguing with the insurance people about not being able to move his shoulder and, you see the disparity?

Emma: Well, a lot of it, it’s not about how [airquotes] disabled you are, if you want to look at it in those terms, it’s kind of about how well you can argue that to people, which is where these huge intersections again, race, class, communication and such, really start coming in. Because if you’re not in a situation to fill out these incredibly challenging forms, read between the lines, do your Freedom of Information request to find out what the criteria is so that you can actually work out what words need to be there, and I’m telling you, they need to be precise. My GP in her letter said: Emma can’t even manage to walk thirty metre without collapsing. And they said ‘Well that means you can walk twenty nine just fine.’ I mean, it’s this kind of precision and the difficulty is a huge issue that needs to be addressed.

Question 7: I was just wanting to touch on what you were saying about social services because I work within the [?] section I haven’t ever had to go into work with [something something] that’s meant they’ve been in a wheelchair, etcetera, or been physically less able but I have had to go and work with lots of women with learning difficulties and I think the presumptions from lots of professionals and the lack of expertise you hold as professional but in that area which is about understanding how somebody’s capacity [inaudible]

Emma: Well, that’s it, its very difficult for a lot of people. You see these horrendous sort of assumptions that because somebody can’t verbally communicate or can’t verbally communicate very well, that that means they’ve got intellectual issues, they can’t be a caring and compassionate parent, which, when you think about it logically, is complete and utter rubbish. But there’s stereotypes still hold and it’s an absolutely huge challenge and they need dealing with and it’s extremely difficult to do so, because a lot of people don’t want to think about disability in serious terms. We don’t like the idea that we could become disabled and I’m pretty sure that when I said one in two of you by the age of sixty-five were thinking: Oh, that poor person next to me. It won’t really be me. [laughter from audience] And it’s all set up psychologically to defend us and to look after us. But it’s a gigantic barrier to try and cross when you’re trying to convince people that this is their issue, and it probably will be them, actually. It’s horrendous.

A Quick Update

I’ve not really been able to sit and blog in the last couple of weeks, which I am sorry about. I have been having trouble with a condition flaring and writing is just one of those things that has been too hard. I don’t think I’ve had a night where I’ve got more than 2 hours uninterrupted sleep in the last fortnight and it has eaten away at my ability to really do much. I’m sure many of you have often been in the same boat.

Still, I have been trying where I can to keep myself busy with useful work and I’ve had my favourite ‘fight back’ song playing as inspiration.

Mis-Shapes by Pulp – a transcript of the lyrics is at the bottom of the post.

The Welfare Reform Bill will be back in the Lords tomorrow. The Peers will consider the amendments made by the House of Commons, which was to refuse the Lords amendment on the “Bedroom Tax”, and they will most likey back down. If the Lords pass no more amendments then the WRB will get Royal Assent (because the Queen really has no power over what she signs or doesn’t) and it will become official. If you want to remind Lords to actually turn up and debate the WRB after the Health Bill, as well as explaining that we are watching then I listed I lot of ways you can contact them here.

So far the government haven’t accepted one amendment and the Lords haven’t forced the issue so an awful lot of nastiness has been passed already. The real struggle is going to be providing support, information and care for those who will be hit by the reforms in the all too near future. That is what I’m starting to focus on and it’s taking a lot of work. I don’t really have anything solid to show for it yet but hopefully in a few months I should be able to write something positive about it all.

Moving away from the WRB, I’m pleased to say that it’s International Women’s Day on March 8th. Given that today the guardian reports that there have been massive failings found in the way Police in the UK handle reported rape’s “Only three out of 43 forces keep up to date area profiles, while 2,131 reported offences were logged as ‘no crimes’” I think it’s clear there is still a fair way to go before women get equality in this country.

That said, On Saturday March 3rd Million Women Rise is holding a huge march & rally in London to coincide with IWD. I’m going to be making the hectic trip to London with my powerchair and I know quite a few other fantastic people will be too, hopefully I’ll get a chance to see some of you there! It promises to be a wonderful day.

Transcript of Lyrics:
Mis-shapes, mistakes, misfits. Raised on a diet of broken biscuits, oh we don’t look the same as youWe don’t do the things you do, but we live around here too. Oh really. Mis-shapes, mistakes, misfits, we’d like to go to town but we can’t risk itOh ’cause they just want to keep us out. You could end up with a smash in the mouth just for standing out.

Oh really. Brothers, sisters, can’t you see? The future’s owned by you and me. There won’t be fighting in the street. They think they’ve got us beat, but revenge is going to be so sweet. We’re making a move, we’re making it now, we’re coming out of the side-lines. Just put your hands up – it’s a raid yeah: We want your homes, we want your lives, we want the things you won’t allow us. We won’t use guns, we won’t use bombsWe’ll use the one thing we’ve got more of – that’s our minds.


Check your lucky numbers, that much money could drag you under, oh. What’s the point of being rich if you can’t think what to do with it? ‘Cause you’re so very thick. Oh we weren’t supposed to be, we learnt too much at school now we can’t help but see. That the future that you’ve got mapped out is nothing much to shout about. We’re making a move, we’re making it now,We’re coming out of the side-lines. Just put your hands up – it’s a raid. We want your homes, we want your lives,we want the things you won’t allow us. We won’t use guns, we won’t use bombsWe’ll use the one thing we’ve got more of – that’s our minds.


Brothers, sisters, can’t you see? The future’s owned by you and me. There won’t be fighting in the street. They think they’ve got us beat but revenge is going to be so sweet. We’re making a move. We’re making it now. We’re coming out of the sidelines. Just put your hands up – it’s a raid. We want your homes, we want your lives, we want the things you won’t allow us. We won’t use guns, we won’t use bombsWe’ll use the one thing we’ve got more of – that’s our minds. And that’s our minds. Yeah.

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