1 in 6 women would rather be blind than fat - so?

[The image is a disability access symbol for people with visual impairments. It has a dark blue background and a grey circle, in which there is a stick figure using what appears to be a cane. The image has been edited to add a fatter tummy and pink hair.]

I was alerted on twitter to a blog post about a recent study which reports that one in six women say they would rather be blind than obese. By sheer coincidence, I had just been reading Whose Tragedy? Towards a personal non-tragedy view of disability, by Sally French and John Swain (pdf), and this sentence stood out:

"To become visually impaired, for instance, may be a personal tragedy for a sighted person whose life is based around being sighted, who lacks knowledge of the experiences of people with visual impairments, whose identity is founded on being sighted, and who has been subjected to a daily diet of the personal tragedy model of visual impairment."

They go on to explain that the Tragedy model of disability and impairment "is not just significant for non-disabled people in understanding themselves and their own lives. It is extrapolated to assumptions about disabled people and their lives".

Non-disabled society's view of disability as something awful which happens to people is very disempowering, and negates the reality that what disables us is an inaccessible society, not the impairment(s) we may have. So, with that in mind, I found the horror with which the revelation that 'some women would rather be blind than fat' was met, to be very telling. Reading between the lines, I hear, Who on earth would rather be blind? Who would choose such a dreadful affliction over fatness?

How would that read to a blind woman? Oh em gee, some people would rather be like YOU than be fat! And how would it read to a fat, blind woman?! How much can we disempower disabled people in one go?

I agree that this survey suggests some very distressing things about women's attitudes to fatness and weight gain. It is depressing that being fat is so feared and so loathed. But saying that the most noteworthy of the things that women 'would rather be' was blind, and then using that as an example of just how incalculably far our body fascist society will make us go to avoid fatness, speaks volumes about our attitudes towards disability too.

Bibliofeminista's post ended by stating,

Maybe if we stopped fat-shaming and equating women’s attractiveness and worth to unreasonable, media-driven standards of beauty, women wouldn’t value their appearance over health..

But blindness in itself is not ill-health! There are very, very many completely healthy blind people, both thin and fat. While I agree with her absolutely about fat-shaming and unreasonable standards of beauty, the rest of the equation does not sit comfortably me, speaking as a fat, disabled woman. It makes me feel like women believe I must have the absolute worst of both worlds, and the last thing I want, when reading feminist websites, is to come away feeling worse about myself than when I started.

(With thanks to Leo Reynolds for the image which I used to create the picture above).

Let Us In! Blogging Against Disablism Day 2011 #badd2011

Today is Blogging Against Disablism Day 2011, and this year I wanted to look at how accessible feminist groups are in the UK to disabled women. So I emailed several feminist network groups at random, whose email addresses I could find, to ask the following questions:

1. Does your group meet in accessible premises?
2. In what ways do you meet the needs of disabled feminists who are / want to be members of your group?
3. Are there aspects of access, and other needs, that you find difficult to meet? Why?
4. Is there anything you would like to say about disabled feminists being included in activism?

The 3 groups I heard back from all reported that they were doing their best to be accessible, but in some cases were having trouble with this. Funding was quoted a few times as a problem, that finding accessible rooms which were also free to hire was very difficult.

Solent Feminist Network, for example, meet in two venues, one of which is accessible and the other not. However, they have a deaf member and have had some good ideas about how to make meetings more accessible to her, and are proactive in inquiring about disability access to other events which they might be promoting or attending.

Gloucester Feminist Network are newly formed and have only hold one meeting so far, but did meet in an accessible venue, inspired in part by being accessible to people with buggies as well as disabled access. They were also aware that there is more to access than physical things, and hoped they could meet anyone's access needs as they occurred.

Finally, Bristol Feminist Network, whose regular meetings are not accessible. They identified the difficulty of finding free accessible rooms, and of not wanting to meet in places like pubs which might not be 'friendly' to women from various communities. However, they are aware that it is a problem, and are taking the issue seriously by continually seeking more accessible venues to meet. And for events, rather than regular meetings, they do strive to always make those accessible, and also mention that they do a lot of online activism which is more accessible to some people.

Sian from Bristol Feminist Network summed up the issue really well, saying

I think that it is vital that feminism looks across all privileges and takes intersectionality seriously and does all it can to be accessible to all. I cannot tell you enough how long we have spent discussing and talking about trying to find the right venue. It will happen because we cannot continue to work in this way. Disabled feminists face discrimination on many levels, vawg [violence against women and girls] effects disabled women at disproportionate levels, workplace discrimination and the cuts are affecting disabled women - we need to work together to fight patriarchy.

One of my first posts at the F Word raged about this issue, and while I stand by how infuriating the situation is, I also cannot rage at individual feminist groups for not meeting in accessible venues. As long as businesses and organisations completely ignore the Disability Discrimination Act and Equality Act and do not provide reasonable adjustments, for instance a ramp or an induction loop, then it is harder for local, grassroots groups to find places to meet that do meet even the legal criteria, never mind the ideal.

The groups I heard back from were at least aware that they may not have as an accessible a group as they wanted, and I do wonder if they replied because of this. The groups I did not hear from may be doing better, or worse, or have not considered the issue, but I only had just over a week to gather responses so it might just be that they did not have time to reply.

There are some recommendations I would make, however.

• All feminist groups should, at the very least, have a prepared statement about how accessible their meetings and events are, to disabled people. Ramps, large print leaflets, a quiet room somewhere nearby, regular breaks, an induction loop system installed, accessible toilets, grab rails, accessible parking, nearby public transport, whether steps have handrails, etc. etc. The best way to find out how accessible your meeting place is, is to ask disabled people to tell you. Often centres for independent living and other disabled groups offer accessibility surveys.
  
  
• If this is an issue your group has not looked at in detail, it has to start being one. You are not representing women, you are not supporting or fighting for women, if a large group of women can't get in, especially if you haven't considered it.
  
  
• Don't believe that you only have to start looking at disabled access when a disabled woman expresses an interest in your group. If there isn't an accessibility statement on your website, or even if a woman sees the venue you meet at, and knows she cannot get in, she may well not contact you to express an interest. The assumption will be made, and you may never know about it.
  
  
• Don't look at the issue as 'letting' disabled women take part, or that you should be an accessible group because it's the right thing to do (although it is). Do it because disabled women have new and different skills, opinions and tactics to contribute to the group, like any new woman who gets involved does. You're not doing us a favour, you're doing yourselves one!
  
  
• If you have limited choice of venues, which are inaccessible, take the initiative and put pressure on those venues to become DDA-compliant. We disabled folks sometimes get tired of always being the ones battering the doors down to try and get in - others taking responsibility to hold businesses to account as well can only be a good thing.
  
  
• Don't assume you know. It is ok to not know, and holding disability awareness events and training for your group, preferably run by disabled people, is a good way to get an understanding of living with impairments, and of the ways society disables us. Because, key to the Social Model of Disability is the understanding that we are not disabled by our bodies or minds, but by steps, small type, complicated language and tiny toilet stalls.
  
  
• If you have a website, do your best to make sure it meets web accessibility standards. If it can be read by a screen reader, and text size easily adjusted, this is a good start. Making easy-read alternatives to your leaflets available on the site is really useful to many learning disabled or neuro-diverse people, and large-print leaflets, and transcribed videos for visually impaired and hearing impaired people.

Please let me know in the comments of how best you think feminist groups can be accessible to disabled women.

[Image is the Blogging Against Disablism Day logo. It contains 20 coloured squares, each with a stick figure in, some with apparent impairments. At the top is text which says Blogging Against Disablism.]

While the Wedding Was On...

[Photograph is of a homemade banner, made out of wood, at the anti-Lib Demo with the words Tory Scum painted onto it in black]

NHS hospitals were told to seek 50% more savings and over 50 political accounts were deleted in Facebook purge.

What else was buried in the wedding news? Tell me in the comments.

Paperchase: Now Catering for Sex Offenders?

[Image is a photograph of a greetings card taken in a shop. The card has multi-coloured text, saying "I'm already visualising the duct tape over your mouth".]

Oh Paperchase, what were you thinking? You stock birthday cards, Christmas cards, anniversary cards, every kind of card I could need. But this one, seen by @jocaulfield - really, what were you thinking?

I have no idea who the target audience is supposed to be, because all I can think of is that it's a perfect card for a stalker to send to their victim. Admittedly it could also be used by kinky folk planning their next play session, but other than that it just screams sex offender.

How would you feel, as a woman, to receive a card like that? What if it was anonymous? Or would it actually be worse if it was signed? If I got that in the post I'm just not sure I would see the funny side, if there even is one. I am pretty sure I'd feel scared and intimidated and threatened.

I can't find it for sale on their website. It might be there, but even working out which category of card it would come under is baffling me. Get well soon? Sympathy? Engagement and wedding?

The presence of this card means that Paperchase does not feel like a shop I want to go into any more. It does not feel like a safe place, nor a place that I would like to give money to. If you want to let them know what you think of this card, you can do so here.

Photograph by, and hat-tip to, Jo Caulfield.

On being on benefits while fat

[Image is a vintage food advertisement from 1895. There is a drawing of a young woman with package of Loring's Fat-Ten-U food tablets and package of Loring's Corpula, a fat-producing food. The text says, "Get Fat on Lorings Fat-Ten-U and Corpula Foods".]

David Cameron today has said that taxpayers [feel that incapacity benefit] recipients should be "people who are incapacitated through no fault of their own", that is, not those who are ill because of alcohol or drugs, or because they are overweight.

According to these statistics, the number of people who claim disability benefits because they are obese, is 1,830. Compare this to 398,700 who claim for depression. It is hardly a raging epidemic. There may, equally, be other people who claim benefits for a particular impairment, while also being obese, and this is a whole other matter entirely. Yet here we have a new message of hatred from the government.

I am on benefits and I am fat. I am not on benefits because I am fat, but I am on benefits because I am ill, and I am fat because I am ill. This is many layered, but before I was ill, I was slim. Too thin for a good while, in fact.

Then I started taking psychiatric medication. The more common antidepressants didn't affect my weight, but when I started taking neuroleptic medication the weight piled on. At the time, Olanzapine was the 'wonder-drug' of choice by many psychiatrists, and I was put on it at a time when a lot of other mental health service users were. We all gained a significant amount of weight, very quickly.

I'm not on olanzapine any more, but I take other neuroleptics and a newer antidepressant, both of which have the same effect on weight. I have, at times, wondered whether I should come off them, to lose some weight, but I made a choice to do all that I could to prevent big relapses, and stayed on the tablets. Believe me, I would be costing the state a lot more if I came off all my meds and lost some weight, but spiralled into a paranoid psychosis at the same time.

These days I also have the added issue of more limited mobility, which means that I often can't do any kind of exercise. Many disabled people face this same situation, and many disabled people take medications which can cause their weight to rise - not just psychiatric meds, but steroids, certain painkillers and all sorts of others can affect appetite and weight.

And if I can't stand up for long enough to cook, or manage to chop vegetables or stand near the stove, then I also can't eat well. If I can't go out to buy fresh food, or can't carry anything home, it is virtually impossible to eat a healthy, balanced diet.

Now, I don't have a problem with what my weight is. It is how it is, I don't hate it, it's just life. I don't claim benefits because of my weight, but if I wasn't ill or disabled I probably would weigh less. However, I am, and it's a small price to pay for relative mental stability (very relative!).

But because of Cameron today, as well as benefit claimants being written off as lazy, scroungers, liars, exaggeraters and malingerers, the Daily Mail readers of the world will be happy to assume that every overweight person on benefits is on benefits because they are overweight.

I don't have a problem with those who are, by the way, but there are many fat disabled people, just like there are many fat non-disabled people. But those who are believing the hype now have an extra line of attack against the country's benefit recipients. An extra line of abuse for us to receive.

(The image is in the public domain, and was made available by Chuck Coker. This blog post is cross-posted at Where's the Benefit?).

Disabled women and sexual assault.

[A photograph of a bright pink, hand-written placard against a brick background, which says "I hate rape". There is a marker pen in the background.]

The Guardian has published an interview with Kier Starmer, the director of public prosecutions, about restoring rape victims' confidence in the criminal justice system.

Rape Crisis reports that

Only 15% of serious sexual offences against people 16 and over are reported to the police and of the rape offences that are reported, fewer than 6% result in an offender being convicted of this offence.

The lousy conviction rate is a key reason that many women do not report being raped. It can feel like a waste of time to even report, when the likelihood is that it will go nowhere?

In recent years, new concerns have emerged among women who are raped, as we hear of more and more being imprisoned themselves when their rape allegations were not proved in court, and perhaps most high profile, a woman who was imprisoned for retracting true allegations. With regard to this specifically, Starmer has now requested that all perverting the course of justice cases that involve retracted rape and domestic violence allegations should be submitted to him for approval.

It seems he is taking action, and I am very glad of that, as it is sorely needed. And Starmer insists that the 25% funding cut to the CPS will not affect sexual or domestic violence services.

One group of women that has been overlooked in these efforts to improve reporting of rape, is disabled women. Around 10 years ago I spoke to a specialist sexual assault police officer about having been raped. It did not go well, and we both decided that I should not proceed with making a formal report. This was initially because I was unable to tell her the details of what had happened. From my point of view, she was a stranger, a quite intimidating one at that, and I had never told anyone the intimate details of what had occurred (and in fact, I still haven't). From her point of view, if I couldn't tell her, then I would never be able to stand up in court and tell a roomful of strangers. I agree. The other reason, however, was that she found out I had mental health diagnoses. She said that this would make me an 'unreliable witness' in the eyes of the court, and my word would not be believed. There was no acknowledgement of cause and effect - that in fact sexual violence may have caused my distress. Many women experience mental distress after rape. If that automatically means we are not 'reliable witnesses', then it needs looking at urgently.

And it is not just women with psychiatric diagnoses who have difficulty reporting rape, or being taken seriously in the judicial system. Women with learning disabilities face similar prejudice, and may have difficulty communicating that any abuse has taken place at all. Disabled women can have more difficulty leaving an abusive relationship, particularly if they rely on the abusive partner to assist them with communication or mobility, and very few refuges are fully accessible even if they can leave.

In terms of domestic abuse, as well as physical, sexual and emotional abuse, there is an extra layer of abuse which can happen to disabled women. Their partner can withhold medication, over-medicate, refuse to assist the woman at all, or refuse dignified assistance options, if the partner is also the woman's carer. They can withhold communication aids, and limit mobility and outside contact considerably.

And it is not just that disabled women are less likely to be taken seriously, and less likely to have access to support and judicial services, we are also much more vulnerable to abuse.

As many as 83% of women who have been disabled since childhood have been the victims of sexual assault, 49% of whom experience 10 or more incidents. 40% of physically disabled women in one study reported have been sexually assaulted, and for individuals with psychiatric disabilities, the rate of violent criminal victimization including sexual assault was 2 times greater than in the general population. 45% of female psychiatric outpatients report being sexually abused during childhood, and horrifyingly, lifetime risk for violent victimization was 'so high for homeless women with severe mental illness (97%) as to amount to normative experiences for this population'. (Statistics all from Wisconsin Coalition against Sexual Assault - the sheer dearth of figures available about sexual assault and disabled women other than these from WCASA, is very telling in itself).

If these efforts to encourage women to come forward, and efforts to support women following sexual assault, do not start addressing the specific issues faced by disabled women, then they are doing all women a disservice. If there is a space in a refuge, but the steps into the building prevent a disabled woman from taking that place, then we are letting women down. If nobody checks with the woman who is unable to speak, whether her assistants are taking care of her with respect and not hurting her, we are letting women down. And if somebody doesn't believe the 'unreliable' learning disabled or mentally ill woman who talks about abuse, then we are letting women down. If disabled women do not have the same access to justice as non-disabled women, then women do not have access to justice.

(Photo by Steve Rhodes. Article cross-posted at The F-Word blog).

Je me relève

I lived in Aix-en-Provence for a year in 1997-98, and on the radio constantly was a version of Chumbawamba's Tubthumping which they had sung in French. Once I left France I told people all about this, but could never find any recording of it anywhere. I have spent 12 years trying to prove that this existed, and this morning I have made the momentous discovery.

Enjoy, Tubthumping in French.

solidarity

Wish i could be protesting in London today. There are so very many things to be protesting against right now.

I hope it goes well and makes a difference.

Published with Blogger-droid v1.6.8

(Edited to add, that was mainly a test of posting through my phone. It worked!)

How will today's budget affect disabled people?

I didn't watch the Budget live this afternoon, and when I was back online I was expecting a flurry of tweets about how it would affect disabled people. There was nothing. The BBC summary of Key Points, and the Independent's summary do not mention disabled people at all, and the BBC Budget Calculator, to work out how much better or worse off will you be in the coming year following the Budget is only for people in paid employment, with no mention of benefits as income other than non-state pensions.

The one piece of possibly good news is that the government are going to 'revisit the issue' of whether the Mobility Component of DLA should be removed for those in residential care.

In the Guardian Columnists' Verdict of the budget. Jackie Ashley says,

I was reminded of that speech Neil Kinnock made back in 1983, warning of the dangers of a Tory government: "I warn you not to be ordinary," he said, "I warn you not to fall ill, I warn you not to get old."

His warnings seem appropriate today: this budget was all about help for business, but with little regard for those not lucky enough to be able to fund a start-up. What about the old? What about the disabled?

and she summarises that, "There was no mitigation of the £18bn cuts in welfare announced in the spending review last autumn".

And for those of you with private jets, I'm afraid you will be paying a little more, but don't worry, the reduction in corporation tax may help to ease the blow.

It is hard to understand why corporations will be paying less, and disabled people barely merit a mention. If the mobility component of DLA for people in residential care is kept, that is a good thing, but all the rest of the disability benefit cuts look like they are still going ahead.

Like I said, I did not watch the Budget myself, and am relying on others' reports about it, but from what I can see, we are again invisible.

[Edited to add: We have had confirmation from Anne Begg MP about what is happening with the Mobility Component of DLA for people in residential care. She says, "They have just delayed it by 2 years. Savings shown in Red Book from 2013 instead of 2011 which was original plan".]

“Rape is the only crime in which the victim becomes the accused.” - Freda Adler

If I was a journalist, and I was reporting on the alleged gang rape of an 11 year old girl, I imagine I would discuss the horror of the situation. I would talk to experts on child rape, and perhaps provide sources of support and information. I would write about the long-term effects that such an assault can have on a girl, and I would perhaps discuss what may be involved in the legal process ahead for this child and the accused men and boys.

However, in researching the story, I found this,

But this is a case that has divided this Liberty County town.

Some sympathize with the suspects, saying the alleged victim was a willing participant, even though she is too young to give legal consent

as reported in My Fox Houston and elsewhere.

That information would change my approach altogether. Her local community and fellow students coming out with statements like,

""To be honest, she looks older than she really is," says Brandi Foster",

and

"“Where was her mother? What was her mother thinking?” said Ms. Harrison, one of a handful of neighbors who would speak on the record"

This girl was allegedly raped by as many as 20 men and boys. She was 11 years old.

Not only are the child, and her mother, being blamed for her assault, an awful lot of concern is expressed for the defendants.

“It’s just destroyed our community,” said Sheila Harrison, 48, a hospital worker who says she knows several of the defendants. “These boys have to live with this the rest of their lives.”

and

“It’s devastating, and it’s really tearing our community apart,” she said. “I really wish that this could end in a better light.” (from NY Times)

and

Sherry Fletcher, whose 20-year-old son Devo Shaun Green is among those charged, spoke to the network about her son's arrest. She said: 'It just seems like a dream. 'I just hope everything comes out well, because some of these kids are innocent.' (from Daily Mail, safe link).

Why is nobody asking what happened in one community to potentially create 20 rapists? Why is nobody expressing concern for the child at all? Why is it that the concern about the legal action is focused on the effect on the accused men, not the effect on the girl?

And if I was a journalist reporting this story, I would never, ever do what the New York Times in particular did, and report uncritically on a community's victim-blaming of an 11 year old girl who has had video of her alleged gang rape passed around her school, and which is now being investigated by the police.

James McKinley, the journalist, considers it newsworthy that

Residents in the neighborhood where the abandoned trailer stands — known as the Quarters — said the victim had been visiting various friends there for months. They said she dressed older than her age, wearing makeup and fashions more appropriate to a woman in her 20s. She would hang out with teenage boys at a playground, some said.

He does not report that it does not matter what a woman or girl is wearing. It does not matter if she 'dresses her age' or not. It does not matter if she wears make-up. He does not even question these statements, he just quotes them as they stand. He does not even mention that an 11 year old child is considered to be always incapable of consent in the law.

People should know better. The New York Times in particular should.

Other online reports of this story have comments like,

It doesn't make it right but when all the truth comes out I won't be surprised if it turns out that she was telling everyone she was 17 yrs old and that she probably orchestrated the whole thing. A lot of young people's lives will be ruined by this young, promiscuous girl. Something this big had to have been planned. Put them all in jail including the young girl.

This misogyny has to end! It does not even matter if she had told anyone she was 17. Or 27. Or 87. Women and girls get raped through no fault of their own. How many times do we need to report this until it is understood?

Thank you to Women's eNews for the photo, and to Liz Henry for the heads-up to the story.

(cross-posted at The F Word blog).

What a difference 10 months make...

Sheffield City Hall. In preparation for the Liberal Democrat conference this weekend, fences have been erected, roads will be closed, buses changing routes, shops closed, for fear of the Rage against the Lib Dems and other inevitable protests.

The Sheffield Star says,

In a bid to keep party delegates safe at the three-day spring summit, mobile fencing has been erected around the venue in Barker’s Pool to keep protesters out.

It is thought thousands of demonstrators could come to Sheffield to protest at Liberal Democrat policies and coalition with the Conservatives.

Compare and contrast with this image. That is a group of people at the same place - Sheffield City Hall. The banners are being aimed at - the Liberal Democrats.



Right to Work criticise the cost of the police operation, saying

“The police operation is costing at least £2 million and the people of South Yorkshire will have to pay to protect the very people making the cuts and destroying their lives.”

Details of Saturday's protest are available here. There are so many issues to protest about. Just take your pick.

(Hat-tip to Sheffield Green Party for the image and the comparison image link).

7 Years Old

This blog is 7 years old today.

Wolfram Alpha tells me that 7 years is equal to 84 months, 365 weeks, 2555 days, 61320 hours, 6.995025 anomalistic years, or 6.99508694957 sidereal years.

In other '7 year' news, The Eiffel Tower is painted approximately once every 7 years and requires nearly 50 tons of paint each time according to this site. And it appears to be a myth that in the length of time this blog has existed, I have replaced every cell in my body.

Happy birthday, hippie blog!

Endometriosis Awareness Week 2011

This week is Endometriosis Awareness Week, and as someone who has the disease I wanted to raise a bit of awareness of it here.

Endometriosis is surprisingly common, and can vary in severity and symptoms from woman to woman. In my case I get extreme pain with my period, and very heavy and prolonged bleeding. I have not tried to get pregnant, so do not know for sure if it has affected my fertility, but I have been told that it probably has seriously reduced my chances of a successful pregnancy. But as a happily child-free person, that is not a personal concern.

So for me, it's the pain. And when I say that I get pain with my period, you may feel you have an idea what that would mean, because many women get pain with their periods. When my periods first started as a teenager, I got period pain. It hurt, and I'd take two paracetamol and it would calm down. I had no idea what was to come for me! After 12 months of relatively normal periods I was on a family holiday in France when my period started. I had never experienced pain like it. It felt like someone was twisting a knife around in my lower back, and simultaneously punching me in the stomach, while tearing the muscles open in my right thigh. I couldn't sit up straight, I could only curl into a foetal position and pray it would stop. On the fourth day I could finally stand up straight.

And so it remains to this day. The first four days of my period I generally cannot stand up or walk. I have to be curled up in an almost self-protective position, take codeine that makes no difference at all, and blank my mind so that I don't add to the agonies with 'why me?' and 'this is awful', neither of which help.

I try to plan so that I don't have anything to do on the first four or five days of my cycle, but it's very irregular, and never works out as I intend it to.

The video above explains the medical side of things, but the personal cost to women is what concerns me particularly. I had surgery to diagnose the endo, but the treatment side of that did not make much difference to my symptoms. Hormone treatments lowered my mood dramatically, and I can't take the pill. I was offered a hysterectomy, but at age 21, as I was, I felt it was too radical a decision to make at that stage.

It took me 7 years from first going to my GP about this excessive pain, to getting a diagnosis of endometriosis. At the time, this was the average length of time for all women. There are numerous reasons for this, but they mainly centre around women and girls not being taken seriously when they complain of period-related pain. As mine started as a teenager, I was told I would grow out of it. I was told it would be fine once I'd had a baby. I was told that *everyone* gets period pain. My friends who had seen how ill I got knew that there was something different about my period pain compared to theirs, but I was unable to convey to the doctors that it was not normal.

For me, it took dragging myself to my GP on the first day of my period. She saw me, unable to straighten up, barely able to stand, and she picked up her pen and paper and referred me instantly to a gynaecologist. He did a laparoscopy, and sure enough, found endo, as well as some other problems too.

If you have any of the symptoms - extreme pain before, during or after your period, pain during sex, excessive bleeding, difficulty conceiving, ovulation pain, bowel or bladder problems, loss of large clots of blood, and other things which you know are not right in your body - go back to the GP and do your best to insist on a referral to a gynaecologist. I wish I could tell you that from there, all would be well, but 12 years on I am still in the same situation as when i was first diagnosed. However, some women do have success with treatments, so they are always worth a try. I get on ok, as long as nobody tries to make me move, or threatens to take my wheat pad away!

This week, be aware of your body. You know what is normal for you.

For further information, see Endometriosis UK, or the Endometriosis She Trust UK.

(Cross-posted at The F Word blog).

Finding RSS Feed Links in New Twitter.

I've been trying to add some twitter things to my google reader today, and finding the RSS feeds for things is suddenly a lot harder, with new twitter.

So, for anyone else wondering, here's what I've got.

If you want to get the RSS feed for twitter search results, so you want the feed to register each new mention of a search term, you use this URL, http://search.twitter.com/search.rss?q=feminism but replace 'feminism' at the end with whatever search you want. Add that URL to your RSS reader, google reader, or whatever you use, and it should work.

The other thing I wanted was the RSS feed URLs for certain twitter accounts. These used to appear below the list of people the account was following, but not any more. Until you log out. So you have to log out, go to that person's account page, and the RSS feed link will be below the images of the people the account follows, in the right sidebar. Then, log back in and do whatever you were doing, but you have the feed URL now.

Hope that helps someone out! It's been frustrating.

We're doing it. Not sure what, but we are.

The person who says it cannot be done should not interrupt the person doing it. -Chinese proverb (via @charityideas).

I'm not normally one for such quotations, but I liked that one.

Headless.

Last night I dreamt that I died. After dying I then woke up again (in the dream). This made me suddenly scared of being buried alive, and as I knew that I was going to die again shortly, I asked that next time I died, that someone should decapitate me so that I couldn't wake up again.

I died again, and then woke up (in the dream) again. This time I had been decapitated but still woke up, as just a head. I started to fear that I would never die properly and stay dead. I also wondered how I would function in the interim, as just a head.

Then I woke up (in real life).

What the fuck does that mean?!

We Can't Go On Like This.

Exclusive: More than 50,000 NHS Job Losses Uncovered by False Economy.

>>>>EDITED TO ADD: Save Our NHS. Sign the petition and email your MP here now.<<<<

Just Because You're Paranoid Doesn't Mean They're Not Out To Get You.

The media rhetoric around, and the threatened government cuts to, disability benefits are filling people with fear. They are contributing to deep suspicion and even aggression from the general public towards disabled people, and lots of us are feeling more than a little petrified.

From Nadine Dorries' Shop a Twit campaign, to virtually everything put out by the Daily Mail, many disabled people are becoming scared to go out, to have occasional treats, to try something normally outside of their limits, such as walking a few steps, or to put their name to anything they post on the internet at all, in case someone should see them, report them for benefit fraud, and accuse them of 'faking it'.

Of those who have continued to post on twitter, despite previous threats, many feel more limited about what they can say, lest they are judged to be faking, scrounging, or wasting taxpayers' money. Still more are finding they feel they have to justify everything they say, just in case somebody is watching. And programmes like the BBC's Saints and Scroungers do little to help, either people's attitudes, or the overriding fear and paranoia experienced by disabled benefit claimaints.

So I was saddened, but not surprised, to see one person's response to this build-up of fear.

I started to worry that my heavy use of twitter could be used against me in this process. I have already explained how and why I can use twitter without that meaning that I am fit to work, but I also worried that my tweets could easily be taken out of context. For example, a tweet about undertaking an activity of some sort could be used as proof that I can do that all the time. What an investigator would not see is how good or bad a day I was having, how much I had to prepare for and work around the activity, or how much pain and exhaustion that activity would cause for days afterwards.

So Steven Sumpter, aka latent existence, took, "the drastic step of deleting all 12,272 of my tweets". All of them. And why? Fear. Fear they would be used against him. Fear that they would portray an image of him actually being fine. Now, I follow him on twitter, and it's not like he's endlessly talking of weekends away skiing and trekking up mountains, and decided he'd better suddenly get rid of the evidence. This is the twitter account of someone who is clearly not well enough to work. This is someone who talks about a good day being when they open their curtains 'without fleeing in pain from the light'.

This someone who nobody could accuse of faking it. Anyone with a chronic illness can recognise straight away that these aren't a series of made-up tweets by someone imagining what it might be like to be ill, and even so he felt so threatened by the current atmosphere of suspicion and attack, that deleting over 12,000 tweets felt like the only way forward.

But he's not the only one scared. It's not a paranoid or psychotic illness which is making him have these suspicions, some of the most mentally healthy people I know concur with him. And I want our progressive, equal society to take a look at itself, and wonder just how progressive and equal it is.

(Cross posted at Where's the Benefit? blog).

Facts About My Impairments You Might Not Have Known #1

There are lots of aspects of disability which I talk about openly, and others that I never mention. Many I just take for granted these days, but I thought it would be good for awareness to share some of them.

So I'm going to have an occasional series of 'Facts about my impairments you might not have known'.

#1 I need artificial saliva in order to be able to swallow.

The TUC, March for the Alternative and Language Discourses which Promote Exclusion.

Two blog posts were brought to my attention yesterday that really merit a post each, but I don't currently have the capacity to do that, so they will have to share a space.

Firstly, an open letter to Brendan Barber, the General Secretary of the TUC, from Disabled People Against Cuts.

This letter is appealing to the TUC to work with them to make the March for the Alternative on the 26th March, more accessible to disabled people. They point out that

At the latest count it was found that disabled people were facing fourteen separate attacks against our lives and living standards as a result of the Coalition government’s policies. What we are witnessing is our human rights, supposedly guaranteed under the United Nations Convention on the Rights of Disabled People, being violated by regressive and draconian cuts to benefit and care funding.

and ask that disabled people are as " fully included in this march and rally as our non-disabled peers would take for granted".

Disabled People Against Cuts have clearly explained the numerous barriers to disabled people's participation in this event, and have as yet failed to get a response from the TUC about their suggestions of ways to improve access.

Given how horrifically the cuts ahead are going to affect disabled people's lives, it seems that we should be at the forefront of planning such protests, not ignored and sidelined.

The second is a post from My Political Ramblings about Welfare Claimants and the Discourse of Threat, and articulates really well the process of scapegoating, rhetoric and stigmatisation involved in making the cuts to disability benefits acceptable to the public. This is a really insightful and useful post, and is well worth reading.

**Edited to add, as I posted this, Lisa posted simultaneously that the TUC have now released access information. Please check her post for the most up to date information.**

(Cross posted at Where's the Benefit?).