Archive for the ‘ me ’ Category

Leaving Abuse

[content note: this post covers my personal experiences with domestic abuse in some detail]

“Why don’t they just leave?”

“If someone did that to me I’d be out of there straight away!”

“If they were really being abused they’d run at the first chance!”

I’ve had all of these statements thrown at me and I’ve heard them applied to others living with domestic abuse. Aside from being generally unhelpful and blaming the victim for the abuse they are receiving, they are also based on a central faulty premise; that leaving domestic abuse is easy. For many of us that live(d) with it, it is exactly the opposite. It’s that difficulty that I’m going to discuss today.

To start with we have to remember a few things about domestic abuse; Continue reading

On Cancer & Chronic Illness

Heya! It’s been a weird year for me, loads of stuff, a lot of it crippling anxiety and a complete loss of motivation, has prevented me from blogging. I’m sorry about that.

As you probably know, I’ve been dealing with chronic health problems for years now; chronic pain, vomiting, nerve damage, gastrointestinal damage, and joint hypermobility. I developed a hiatus hernia in September which was having some pretty severe side effects, so I had an abdominal CT scan at the start of this year. It didn’t just find the hernia, but it also found a shadow on my right kidney. I had a more detailed scan in March, and in April a very nice Urologist and a Macmillan nurse told me the mass was solid, and most likely cancerous (over 90% chance), otherwise it would be precancerous with a very high chance of becoming cancer in the future. They tabled surgery within 4 weeks, and got it out. I’m currently recovering after having a open partial nephrectomy and getting the 21 staples removed this morning.

I’ve been thinking about the ways in which cancer is treated differently to other chronic illnesses, many of which also have pretty depressing prognosis’s; Continue reading

Groundhog Doctors Appointments

I am so very, very sick of having this conversation with doctors;

Doctor: “We can’t do anything more for your condition without surgery. Surgery is not an option because it is far too risky. Now it’s just a case of finding ways to manage your condition, like pacing. Let’s talk about what would help.”

I get some aids/medication to help and I go away and practice pacing. I come back 6 months to a year later.

Me: “Now that I’m not focused on trying to find a cure I’ve come a long way in managing my condition. I’ve used [x] aid to help with pacing & [y&z] medication have really helped. I’m feeling a lot better and doing a lot more.”

Doctor: “We don’t want you to become reliant on your aids or medication! What would happen if you suddenly got better?”

Me: “…but you said that I wouldn’t and that we needed to focus on management now.”

Doctor: “Don’t be defeatist. That’s a very negative attitude to take. How is your mental health? How about I send you to see Dr/Nurse So-and-so to talk about other interventions.”

I go to see the new Dr/Nurse and then come back to visit my Doctor to get the results.

Doctor: “We can’t do anything more for your condition without surgery. Surgery is not an option because it is far too risky. Now it’s just a case of finding ways to manage your condition, like pacing. Let’s talk about what would help.”

IT’S NEVER ENDING.

Even when I point out how frustrating having the same conversation is it does nothing. Bah.

The Perils Of Being Emotionally Unstable

It’s 2013, January is steadily disappearing and I haven’t written a new blog post in a little while. I’ve been struggling quite a bit with mental health issues lately and it’s made writing on my blog quite difficult, but I think it’s time to give it ago.

Trigger warning for after the cut; talk of domestic abuse, stalking, harassment, courts and mental health

Taking my abusive ex-partner to court was a really difficult thing to do. He was being charged with harassment because of the following;

  • Kept standing outside of my place of employment and watching whilst I worked in a manner that was very intimidating given our past.
  • Occasionally he’d come in and flip out of control, shouting and making threats – eventually I lost my job because he kept doing that and scaring away customers.
  • After I passed one of his friends on the street or saw them in a bar he’d be there in no time calling me names and making threats.
  • He made a fair few threats to kill me and I believe he would have on a couple of occasions if police sirens (called by witnesses) hadn’t scared him off.
  • He kept sending letters telling me about things he knew I’d brought for my (ground floor) flat which he could have only known about by looking through the windows.

The police were very supportive and arranged for me to give my evidence via a video link because the idea of ever seeing his face again was making me break down completely, I’d been living in fear of it for so long. The court date was pushed back by the defence at the last minute and I spent another 3 months telling myself it would all be better after the hearing.

At the hearing I gave my testimony and spent much of the time in tears as I had to relive what had happened. It was hard as the magistrates frequently had to tell him to “be quiet”, “stop banging the wall” and to “sit down” which really intimidated me at the time. It was all going as well as these things can until I was asked by the prosecutor why I was so scared of him and I tried to explain it was because of the abuse I’d lived through. The magistrates stopped me and told me they couldn’t hear about any events that happened before a certain date (which included our entire relationship, criminal damage to my property, sending the police to my home for no reason simply to scare me and more death threats). How do you explain why you are completely terrified of someone who breached pretty much every basic human right you had until you no longer believed you were a proper human being any more, when you can’t say anything about the way they treated you? I couldn’t find a way. When I left everyone was very nice and explained that because of his behaviour in the dock, the two outright lies he’d told that had been contrary to other statements he’d made, the testimony of the witnesses and the fact they couldn’t find one witness for the defence he was finally going to get what he deserved.

After the hearing  I got a phone call to tell me that he had been found ‘Not Guilty’ and given a serious warning that if he did anything else it would come straight back to court and he’d be charged. The reasons the magistrate gave for this verdict was because I had been “overly emotional” given what he had done (that they had been able to hear about) whilst giving my evidence which threw my testimony into doubt. I was the reason he got off. My emotions were the reason he was able to tell everyone he was innocent of *everything*. I was branded another lying woman by everyone that knew about it and my world fell apart. Things got so bad I had to move to a new city. All because of my emotions.

So when I saw my psychiatrist and she told me that as well as depression, anxiety and PTSD they were adding a diagnosis of emotionally unstable personality disorder I crumbled. Of course, that apparently just made me look more emotionally unstable because “the diagnosis shouldn’t have made [me] cry, most people find it very empowering”. It brought back all the feelings of pain when the abuse I suffered was dismissed because of my emotions. It made me feel like they were saying I was a broken person and therefore brought it upon myself/was over exaggerating things. I became scared that by my activism, blogging and tweeting was me unhealthily engaging in confrontations so I cut it right down.

It gave me time to think and to talk to those close to me about it. I have come to realise the diagnosis is clearly incorrect. I really don’t fit the diagnostic criteria at all. So, I am trying to challenge the diagnosis. It’s been taking up a lot of time and energy and it’s really thrown me back into a similar head space to that which I was in after the court case. In an effort to get past this blip I thought I’d write it down and draw a line under  it all. 

Job Hunting – Part Two

I said I’d write a follow up when I had more news and now I do!

I did apply to a service designed to help disabled people into work but discovered to my dismay that they wanted a complex referral from social services. Not having any idea how to sort it out and quite frankly not having the energy to do so I have not gotten around to sorting that out.

I have kept one eye on the governments Job Search website but to no-avail. The closest I’ve come to a really flexible job that would fit around my health issues was the mistakenly advertised “Babe Chat” position. I’m not anti-sex workers, but it’s not something I feel comfortable doing. I also don’t imagine for one second I’m exactly the kind of person that Loaded TV were hoping to recruit *grins*

I did start checking charity websites and looking at jobs within the Tribunal Service as well as considering applying to be a magistrate. Sadly I don’t meet the health requirements to be a magistrate, and the tribunal service isn’t recruiting until March 2013. Luckily I did spot a vacancy with a mental health charity, working about 10 hours a month, helping with quality assurance work. I applied back in November and was fortunate enough to get a telephone interview in early December. Just before Christmas I got an email inviting me to start training in Spring! I’m pretty darn chuffed, but given the wait before starting and the current economic situation I’m trying not to get my hopes to high – just in case it gets rescinded. 
I’m going to leave the job hunt there for the moment as I have been fortunate enough to find an opportunity that appears to suit my health condition as well as being physically & mentally accessible. I imagine I will have more to add when I have a start date and I find myself needing to deal with the DWP. 

Communication Barriers

I’m back on-line  Three months without internet is hard. Very hard. Especially when most of your daily contact with the outside world happens via the web.

I’ve been offline because we moved house, I now live in a wonderful little bungalow in a nice area surrounded by friendly neighbours. Sadly the council poured tarmac over our local junction box and it’s taken months to locate it and dig it up so that we could get our phone line & internet connected. Over the last few months I’ve missed a lot of stuff, the protests over ATOS’s involvement with the Paralympics, the Paralympics themselves and all the media coverage, party political conferences, dodgy TV, attacks on women’s rights and millions of other things that didn’t make it into the news.

I have spent a couple of months now dealing with a massive flare up of depression and anxiety which I realise was in part because I have felt massively isolated since moving. Not only am I physically further away from most of my friends, I lost my ability to communicate with them and keep up with their lives. When I can’t meet people face to face I, like many others living in today’s society, fall back on social networking or emailing to keep up to date. Without that I found myself really struggling. I started falling into some very negative thinking patterns and lacked the easy access to support and positive reinforcement to challenge them in an effective manner.

It’s really hammered home for me just how important the internet & social media are for me and (I assume) for many others in similar positions. Actually, it’s hammered home just how important the ability to communicate with others and feel heard is. Regardless of the medium used I feel it’s very important that everyone has a way of expressing themselves to others and communicating their needs. Freedom of expression is a Human Right after all;

“everyone shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of his choice”

These last few months have left me thinking about how easily that right is stripped from people. Those who have difficulty communicating in a socially acceptable manner, those who are bullied/coerced into silence through fear, those who are simply never provided the equipment or assistance to be able to communicate with others in a mutually meaningful way and so on and so forth.

As attacks on vulnerable people step up in our society it’s crucially important that we don’t forget about those who can’t join the debate because they are silenced by a lack of access.

Where Have You Been?

I’ve been rather absent from the world over the last month because life has gotten in the way of activism which in some ways is a shame but mostly it’s to be expected from time to time. Preparing to move house and health issues have eaten up my time and energy. Even with that going on there have been a couple of high points so  I thought I’d post an update.

ESA


I thought I’d start on a positive note. I’ve had some great news, I appealed a DWP decision to place me in the WRAG (Work Related Activity Group) for ESA (Employment Support Allowance) on the basis I am virtually unable to walk (or unable to walk without severe pain & discomfort). I sent in a letter quoting the criteria for the support group I believed I met, told them exactly which doctors letter confirmed it and waited to hear if it would be enough. It turns out it was! Now I’m in the support group and able to do as much voluntary work as I can manage. 


To me it doesn’t feel any different to being the the WRAG if I’m honest. My local Igneus branch (the company paid by the DWP to get sick/disabled people into work) didn’t think I stood a chance in hell of being employed when I was in the WRAG so they just left me alone to carry on doing little bits of voluntary work here and there. I am well aware some other people are not as fortunate.

Health


My personal health has not taken any dramatic turns for the worse over the last month but I have been caught in a rather naff flare up. 


For those not familiar with the term, a flare up is pretty common when you have a chronic condition. They happen when something causes the condition to get really bad for a few days or sometimes weeks. It’s not that the condition has taken a turn for the worse, it’s just that it goes through a bad patch. After a flare up it’s common to feel ‘set back’. A week in bed or a few days of not eating can leave you feeling weaker than before. A mental health flare up can leave you feeling rather rattled or exhausted for a while afterwards. 


In my case I had a pretty nasty infection for over a week then as I was recovering my bowel became twisted which has caused a lot of pain and discomfort. I’m used to having a twisted bowel, it happens at least twice a month and usually resolves within 8 hours of the pain getting to that unbearable point. Unfortunately this episode has been going on for 4 days now and is wearing me (and my Oramorph supply) down. Luckily the twisting seems to have only partially blocked it so far so I’m not going into hospital but I’m still in a lot of pain with it.


As a result I’ve spent the last 3 weeks in rather ill health which has really negatively impacted on my ability to do much more than moan about how unwell I feel. 

Netroots UK


I went to Netroots UK at the end of June to try and get some ideas for my activism. I was lucky enough to meet a bunch of wonderful Welfare Warriors and to have a chance to chat to some other people I’ve admired for quite some time. 

I left feeling inspired to keep pushing my local and political work as well as assisting with national campaigns where I can. I’ve spoken to a few people about getting involved in some exciting projects once I’ve finished moving house, if any of them get off the ground I’ll keep you posted.


Moving

I’m still moving house which is taking longer than initially expected because of my bout of extra-ill health and the house needing a bit more work than we originally thought it would. Still, we have done a lot of work and it’s paying off. It all looks far better now and should only get better as we continue. I’m very excited about getting in now, luckily it should only mean waiting 3 weeks now!

Some Good News

I feel I should mention before I go on to talk about my good news that there was a Opposition day debate today. Liam Byrne MP (Labour) tried to get a motion passed which would see the lives of disabled people improved. He was trying to get the government to agree that a) the WCA (work capability assessment) was unfit for purpose and needed reforming and b) that they should do a cumulative impact assessment on welfare reform. The ConDems blocked it the way they block every motion that would improve our lot. No one was surprised, many felt a bit more depressed.

I thought that news was going to be it for today so I was getting ready for some hardcore sulking about it when I remembered I hadn’t checked the post. When I got to the door there was a big brown envelope waiting for me from the DWP. Those who claim any form of benefit will tell you that this is not usually a welcome sight. These envelopes tend to herald at the least heartache and frustration and at the worst terrifying financial decisions and accusations of fraud.

I sat down to open it and out came a thick wodge of paper. I remembered that I had appealed the decision to be placed in the ESA WRAG (work related activity group) on the basis I actually meet some of the criteria for the Support Group. I assumed from the day I sent the appeal in they would deny it, so this felt like no surprise – it was clearly information on how to appeal.

You can imagine my shock when I flicked my eyes down and read the following;

Photograph of DWP letter, click to enlarge. Transcription of the text follows.

About your claim for Employment Support Allowance.

You made an appeal against a decision about being placed in the work related activity group. 

We have looked at the evidence you provided and your records and decided to change the decision in your favour.”

I actually went white and dropped the letter. To my great shock they had even returned the evidence I had sent in  to ‘prove’ my condition. I was getting scared that all my originals had gone missing.

I’m very happy. Not only have I managed to explain to the DWP why I deserve to be in the support group without having to attend an odious ATOS interview, we have got the keys to an accessible bungalow that we are currently decorating and my DLA claim is finalised. Now I can get on with helping other people fight for their rights instead of having to use the precious little energy I have left at the end of the day to fight the DWP and local council.

It’s been 3 years of battling, which is 2 years 10 months more than I feel it should have been, but we’ve done it. Now I feel like I could sleep for a month!

Being Non-Binary

I’m genderqueer. It’s something I haven’t really written about but feel like I should so bear with me whilst I try.

For years I didn’t feel comfortable in myself, something seemed wrong. I didn’t feel like a woman or a girl but at the same time didn’t feel like a man or a boy. The whole time I assumed that because I didn’t want to transition to a different body I was just being weird so just I ignored my internal disquiet.

At Uni I had a brief foray into trying to appear more masculine but it didn’t work for me. I didn’t feel like a man any more than I did a woman. Years crept by until eventually I realised that I didn’t really believe I had a gender. I didn’t believe deep down that I either was male or female. I thought of myself either as someone of a third gender or simply as genderless. As at the time I identified as bisexual I was aware of the T & Q elements of LGBTIQ. A lot of reading and questioning later I realised the term genderqueer applied to me. It covered everything I had been struggling to give voice to for years and stopped me feeling like I was alone in feeling that way. Speaking to other genderqueer people really helped me feel like I could be accepted for who I am. It also led to me finding pansexual to be a much more fitting term for my sexuality than bisexual, as the ‘bi’ aspect represents the false (in my opinion) gender binary.

Most don’t think I’m genderqueer when they meet me because I don’t present in an androgynous or butch manner. The reason I don’t is because I don’t feel like I’m both genders, nor do I feel masculine so I don’t see any point in going to lengths to dress that way. It still won’t reflect what’s going on behind my eyes. I present in a femme manner because my body shape lends to it and femme clothing fit’s well and feels comfortable*. Having hypersensitivity issues and chronic pain in my abdomen mean comfortable clothing is a must for me. It doesn’t feel like it represents what’s inside of course, but at least it’s physically comfortable. I also think there is value to challenging the stereotypes that appearing femme is a bad, counter-revolutionary thing in feminist circles.

That’s all I really feel comfortable writing about me right now so I’m going to leave it there.

Thanks for reading

* I don’t sew, nor do I have the funds to have clothes made for me

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.

%d bloggers like this: