Women’s health

Employment and Support Allowance: Re-tests axed for chronically ill claimants

October 20, 2016
Cross-posted from: Jayne Linney
Originally published: 01.10.16

Both ‘Official’ and Social Media are buzzing this morning with the above news – at last those of us who are chronically ill will no longer have to perpetually be tested for our ESA. This is very welcome news but…until I know exactly what ‘Chronically Ill’ constitutes, what illnesses and diseases (as reported on the 8.00 am news) make up the list, I will refrain from using 3 hours energy getting excited. 
Read more Employment and Support Allowance: Re-tests axed for chronically ill claimants

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When Friends Forget You’re Still Alive- the life of a sick person

October 18, 2016
Cross-posted from: bottom face
Originally published: 04.07.16

Every day I lie in bed. The TV chatters in the background telling stories I do not even listen to. The curtains swell like the sails of a yacht and the noises of the outside world drift in in a jazz breeze. Car doors slam, children holler and laugh, a mum scolds her child, a lawn mower hums in the distance. The noises of lives lived, so unlike my own it’s almost absurd that they should be so near. And I lie and I half listen, and I drift in and out of sleep.

I barely see friends anymore. Too many invites unaccepted, so the invitations stopped. Too many stairs, and hills and bumpy pathways on the journeys once-upon-a –time-friends take. Mostly I’m alone. Yesterday I spoke to a friend I haven’t seen lately. She told me a dozen stories about people she’s spent time with whilst she was too busy to spend time with me. “We’re going camping this weekend. It was just going to be me and John, but then I invited Tracey, and then Gemma, and Sarah, and now it’s just grown into an event.”  I wonder whether it ever occurred to her to invite me. She keeps the tent that I own at her house as she has more room than we do. The deal being that she can use the tent whenever she needs to.


Read more When Friends Forget You’re Still Alive- the life of a sick person

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Blissful yoga via @jenfarrant

October 10, 2016
Cross-posted from: Jen Farrant
Originally published: 23.09.16

img_6770I have practiced yoga for over twenty years now, most of it at home on my own, sometimes attending classes and more off than on if I am honest. Since I got sick I have done yoga every morning as a way to help my body heal, gain strength and cope with stress, which has an enormous detrimental affect on me.

For the most part it has been quite difficult. Mornings can be tough for me and I am often incredibly painful and sore, getting moving is an effort of will and doing yoga would sometimes feel like it was something I had to force myself to do in order for my body to work and keep moving. 
Read more Blissful yoga via @jenfarrant

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PIP – Permanently Irritation Persecution? by @JayneLinney

September 8, 2016
Cross-posted from: Jayne Linney
Originally published: 07.06.16

Recent experience leads me to ask the question what does is PIP – Personal Independence Payment OR Permanently Irritation Persecution?

In February  I wrote about how following the DWP rules resulted in my health deteriorating, since then it has been one thing after another. The report from Capita following this assessment  was dire, therefore it was back into the Mandatory Reconsideration process once again, and duly into the request for Tribunal.
Read more PIP – Permanently Irritation Persecution? by @JayneLinney

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Growing old while female by @WomanasSubject

November 1, 2015
Cross-posted from: Woman as Subject
Originally published: 16.10.15

Aside from being a little bit wiser and having to admit that I have an informed opinion about washing machines, I don’t really feel much different to the 25 year old version of myself that I once was. I often think I have a bizarre mental condition where I look in the mirror and fail to see the fact that I have clearly grown older (age-o-rexia?) My mind erases the wrinkles and grey hairs, kindly photoshopping out the ageing process and helping me to pretend that the inevitable isn’t happening.  I’ll never forget my 75 year old Grandma looking me in the eye and telling me: “I don’t feel a day over 25 my dear. I often look in the mirror and wonder who on earth that old lady staring back at me can be” – a sentiment I am slowly beginning to understand.

Despite my inability to see it, I am clearly ageing however. The big 40 is looming and I can see the unwanted and mysterious figure of my future menopause waving at me from the horizon. In these times of extended adolescence, you can kid yourself that you’re still young at 30, but by the time you start to approach the next big birthday you really have to admit that you are definitely a grown up now. The fact that I am also responsible for two whole other people and seen as some kind of authority figure only adds to this ridiculous notion. Yes, I am definitely getting older.


Read more Growing old while female by @WomanasSubject

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This is about my period, full stop

August 17, 2015
Cross-posted from: No Humiliations Wasted
Originally published: 24.04.14

Logo for the TV show True Blood, consisting of the first word in black angular letters, the second in red, on a pale grey background.Periods periods periods periods periods. Bloooooooooooooooooooooooooooooooooood.

OK, the squeamish people should have left us now.

I’m super impressed that Mad Men showed us Sally Draper’s first period, but mine was nothing like that. Instead of the bright red stain I was expecting, I got a small brown smear. I was 11, and I had no idea what it was. After worrying for a while, I told my mum that I had something weird going on in the knicker department, and she gently broke it to me that this was my period.

“But it’s not red, it’s brown,” I told her, not having considered what blood looks like when it dries, and really hoping I could argue my way out of this one. “It’s your period,” she said again, softer this time.


Read more This is about my period, full stop

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Silence Equals Death: Why Women MUST Speak Out About Illness by @VABVOX

June 7, 2015

I came of age as a journalist at the beginning of the HIV/AIDS crisis. Being a female reporter in a still-largely male profession, I got handed what then looked like a small beat that wouldn’t amount to much. Within a few years I was traveling across the U.S. covering breaking news on what was fast becoming an epidemic.

The mantra of AIDS activists in that period of the late 1980s into the 1990s was simple as it was graphic: Silence = Death.

Government officials refused to talk about HIV/AIDS, either at the federal level or the municipal level. I covered one demonstration outside the White House where AIDS activists kept chanting “say it, say it!” because then-President Ronald Reagan had refused to even say the word “AIDS,” even though his close friend, actor Rock Hudson, had become the first celebrity known to have died of the disease a few years earlier.


Read more Silence Equals Death: Why Women MUST Speak Out About Illness by @VABVOX

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Women’s health: the patriarchal paradox at FemmeVision

April 27, 2015

cross-posted from FemmeVision

orig. pub. 2012

‘Health – bounding saucy health – is the fountain from which all true beauty springs.’1

This quote, from The Girl’s Own Book of Health and Beauty, sums up the perception of girls’ and women’s health in the late 19th and early 20th centuries. A woman’s health was never just about her physical condition, but was related to her mental health and, most importantly, her appearance.

The commonly held view, propagated by ‘experts’ such as Dr. Henry Maudsley, was that girls had a finite store of energy, which needed to be reserved for the processes of pregnancy and childbirth. Any woman who was too active before marriage would exhaust this supply of energy, making for a weak, frigid and mentally deficient adult.

Some medical professionals and social commentators used this popular belief as an argument to petition against women’s education, for example, Maudsley, who wrote of the ‘excessive mental drain as well as the natural physical drain’ caused by school or college study.2 For women to reach the ideal of motherhood, therefore, and produce many strong and healthy children, the safest and most healthy pre-marriage lifestyle involved remaining in the home, inactive except when engaging in sedentary, non-intellectual pastimes.

The ‘New Girl’

In the post-First World War era, however, the ideal image of female health and beauty underwent a radical revision and the ‘New Girl’ emerged. Sport and outdoor activity were encouraged and beauty was linked with physical strength and the shapeliness that comes from regular exercise. Bodily beauty was linked with sexual attractiveness, and the role of the wife as a sexual partner, rather than as a mother, was emphasised, placing value on youth and women’s responsibility for their own lives and winning a husband.

The link between health and sexual attraction persists in our current popular culture. Newspapers and magazines promote diet and exercise, primarily in order to achieve a desirable body.  Even in supposedly health-focussed publications, physical shape and appearance, not intrinsic health, is the real subject of the advice, as a recent blog piece on the magazine, Women’s Health, points out.

Despite the more than 100 years that have passed since Gordon Stables published The Girl’s Own Book of Health and Beauty, we are still transfixed by the idea that health is linked with appearance. In the media, women promote health products to other women through their appearance; we should be attractive, active, always striving for self-improvement and always, always thin (yet still constantly engaged in an on-going effort to lose weight). Furthermore, we are also responsible for each member of our family’s health. Possibly the only indulgent product women are ever seen to promote is chocolate, which is represented as a guilty, sexualised pleasure to indulge in secretly (see every Galaxy ad ever made).

However, while women are placed as instigators and protectors of their own and their family’s healthy eating habits, advertising aimed at men encourages indulgence in laziness and greed through the consumption of unhealthy drinks, snacks and junk food.  But despite the preoccupation with women’s health in the media, it is the bad eating habits in men promoted by such gender-specific marketing that have been blamed for a far greater cancer risk in men than women. Yet the stereotyped images persist.

Doctor knows best

The late 19th century saw the development of obstetrics and gynaecology as discrete specialisms, opening a new market in the medical landscape. The effect of this was that doctors now had even greater control of women’s bodies, administering questionable and barbaric treatments for disorders such as epilepsy and ‘hysteria’. For example,  genital massage and the development of the vibrator for the treatment of hysteria, or Dr. Isaac Brown Baker, who claimed success in treating epilepsy and other nervous disorders in female patients by excising the clitoris. In the case of the development of the vibrator, as Rachel P. Maines highlights, ‘Doctors were a male elite with control of their working lives and instrumentation, and efficiency gains in the medical production of orgasm for payment could increase income.’

At this time, the female anatomy was shrouded in mystery. As Maines points out, Thomas Laqueur says that physicians writing of anatomy ‘saw no need to develop a precise vocabulary of genital anatomy because if the female body was a less hot, less perfect, and hence less patent version of the canonical body, the distinct organic, much less genital, landmarks mattered far less than the metaphysical hierarchies they illustrated.’ Therefore, treatment for women was much more fluid, experimental and ambiguous; for the female patient it all came down to trust in the physician’s knowledge and methods.

The image of the doctor as profit-focussed businessman, who capitalises on the lack of knowledge of his patients is reflected in the recent case in Bluegrass Women’s Healthcare Centre, where the owner pleaded guilty to misbranding non-FDA approved forms of birth control. In addition to the immorality and illegality of this action, the fact that these were intrauterine devices adds an extra level of violation. Women, against their will had had a potentially dangerous object placed inside them by someone they should be able to trust.

The paradox

Women’s health, therefore, has always been a strong preoccupation for patriarchal society. The womb is seen as public property and the health of its owner crucial to the that of the society as a whole. Though we are now somewhat more scientifically informed, many of the beliefs around women’s health of the late 19th and early 20th centuries persist today. We still equate women’s health with sexuality, and place the responsibility for the wellbeing of the family, and therefore society as a whole, on women’s shoulders.

Yet, ironically, it is often women that suffer the most when it comes to cuts in health services. Take this open letter from a resident of Ravalli county in the US, in which commissioners voted to eliminate funding to women’s healthcare. To these commissioners, the woman writes, ‘somewhere down the road you may meet a woman who has no hair and less hope due to an advanced breast cancer that, if you had voted differently, could have been caught earlier’. And elsewhere in the US, politicians have been accused of backing policies that are anti-women’s health.

In the UK, a discussion on the BBC’s Woman’s Hour on NHS funding for IVF revealed that 50% of those polled believed that, as a non-emergency treatment, the NHS should not fund IVF at all. Of course, access to IVF is not something that solely affects women but this is another area in which women can be attacked and made to feel guilty about their health. By taking away the universal right to fertility treatment (even just by raising the question in discussion), the message is sent that if you cannot conceive naturally your health must be at fault and you must live with the consequences. The technology that has been developed that could help you can only be accessed by the elite.

This shows that, when it comes to women’s health, there has really been very little progress made since Victorian times. Evidence shows that, when and where there are resources and a market in which to make a profit, women are made to feel their health is imperative, and that there is something inherently unstable in being a woman that makes her mind and body vulnerable to disease, which must be remedied with medicine without question. However, when resources are scarce, it is women’s healthcare that is the most dispensable.

References

  1. Gordon Stables, The Girl’s Own Book of Health and Beauty, London: Jarrold and Sons, 1891.
  2. Henry Maudsley, ‘Sex in Mind and in Education’, Fortnightly Review, 15, 1874, 466–83.

 

Categories: Featured Blog, Reproductive Justice
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Women’s health: the patriarchal paradox at Femme Vision

September 11, 2014

(Cross-posted from Femme Vision)

‘Health – bounding saucy health – is the fountain from which all true beauty springs.’1

This quote, from The Girl’s Own Book of Health and Beauty, sums up the perception of girls’ and women’s health in the late 19th and early 20th centuries. A woman’s health was never just about her physical condition, but was related to her mental health and, most importantly, her appearance.

The commonly held view, propagated by ‘experts’ such as Dr. Henry Maudsley, was that girls had a finite store of energy, which needed to be reserved for the processes of pregnancy and childbirth. Any woman who was too active before marriage would exhaust this supply of energy, making for a weak, frigid and mentally deficient adult.

Some medical professionals and social commentators used this popular belief as an argument to petition against women’s education, for example, Maudsley, who wrote of the ‘excessive mental drain as well as the natural physical drain’ caused by school or college study.2 For women to reach the ideal of motherhood, therefore, and produce many strong and healthy children, the safest and most healthy pre-marriage lifestyle involved remaining in the home, inactive except when engaging in sedentary, non-intellectual pastimes.

The ‘New Girl’

In the post-First World War era, however, the ideal image of female health and beauty underwent a radical revision and the ‘New Girl’ emerged. Sport and outdoor activity were encouraged and beauty was linked with physical strength and the shapeliness that comes from regular exercise. Bodily beauty was linked with sexual attractiveness, and the role of the wife as a sexual partner, rather than as a mother, was emphasised, placing value on youth and women’s responsibility for their own lives and winning a husband.

The link between health and sexual attraction persists in our current popular culture. Newspapers and magazines promote diet and exercise, primarily in order to achieve a desirable body.  Even in supposedly health-focussed publications, physical shape and appearance, not intrinsic health, is the real subject of the advice, as a recent blog piece on the magazine, Women’s Health, points out.

Despite the more than 100 years that have passed since Gordon Stables published The Girl’s Own Book of Health and Beauty, we are still transfixed by the idea that health is linked with appearance. In the media, women promote health products to other women through their appearance; we should be attractive, active, always striving for self-improvement and always, always thin (yet still constantly engaged in an on-going effort to lose weight). Furthermore, we are also responsible for each member of our family’s health. Possibly the only indulgent product women are ever seen to promote is chocolate, which is represented as a guilty, sexualised pleasure to indulge in secretly (see every Galaxy ad ever made).

However, while women are placed as instigators and protectors of their own and their family’s healthy eating habits, advertising aimed at men encourages indulgence in laziness and greed through the consumption of unhealthy drinks, snacks and junk food.  But despite the preoccupation with women’s health in the media, it is the bad eating habits in men promoted by such gender-specific marketing that have been blamed for a far greater cancer risk in men than women. Yet the stereotyped images persist.

Doctor knows best

The late 19th century saw the development of obstetrics and gynaecology as discrete specialisms, opening a new market in the medical landscape. The effect of this was that doctors now had even greater control of women’s bodies, administering questionable and barbaric treatments for disorders such as epilepsy and ‘hysteria’. For example,  genital massage and the development of the vibrator for the treatment of hysteria, or Dr. Isaac Brown Baker, who claimed success in treating epilepsy and other nervous disorders in female patients by excising the clitoris. In the case of the development of the vibrator, as Rachel P. Maines highlights, ‘Doctors were a male elite with control of their working lives and instrumentation, and efficiency gains in the medical production of orgasm for payment could increase income.’

At this time, the female anatomy was shrouded in mystery. As Maines points out, Thomas Laqueur says that physicians writing of anatomy ‘saw no need to develop a precise vocabulary of genital anatomy because if the female body was a less hot, less perfect, and hence less patent version of the canonical body, the distinct organic, much less genital, landmarks mattered far less than the metaphysical hierarchies they illustrated.’ Therefore, treatment for women was much more fluid, experimental and ambiguous; for the female patient it all came down to trust in the physician’s knowledge and methods.

The image of the doctor as profit-focussed businessman, who capitalises on the lack of knowledge of his patients is reflected in the recent case in Bluegrass Women’s Healthcare Centre, where the owner pleaded guilty to misbranding non-FDA approved forms of birth control. In addition to the immorality and illegality of this action, the fact that these were intrauterine devices adds an extra level of violation. Women, against their will had had a potentially dangerous object placed inside them by someone they should be able to trust.

The paradox

Women’s health, therefore, has always been a strong preoccupation for patriarchal society. The womb is seen as public property and the health of its owner crucial to the that of the society as a whole. Though we are now somewhat more scientifically informed, many of the beliefs around women’s health of the late 19th and early 20th centuries persist today. We still equate women’s health with sexuality, and place the responsibility for the wellbeing of the family, and therefore society as a whole, on women’s shoulders.

Yet, ironically, it is often women that suffer the most when it comes to cuts in health services. Take this open letter from a resident of Ravalli county in the US, in which commissioners voted to eliminate funding to women’s healthcare. To these commissioners, the woman writes, ‘somewhere down the road you may meet a woman who has no hair and less hope due to an advanced breast cancer that, if you had voted differently, could have been caught earlier’. And elsewhere in the US, politicians have been accused of backing policies that are anti-women’s health.

In the UK, a discussion on the BBC’s Woman’s Hour on NHS funding for IVF revealed that 50% of those polled believed that, as a non-emergency treatment, the NHS should not fund IVF at all. Of course, access to IVF is not something that solely affects women but this is another area in which women can be attacked and made to feel guilty about their health. By taking away the universal right to fertility treatment (even just by raising the question in discussion), the message is sent that if you cannot conceive naturally your health must be at fault and you must live with the consequences. The technology that has been developed that could help you can only be accessed by the elite.

This shows that, when it comes to women’s health, there has really been very little progress made since Victorian times. Evidence shows that, when and where there are resources and a market in which to make a profit, women are made to feel their health is imperative, and that there is something inherently unstable in being a woman that makes her mind and body vulnerable to disease, which must be remedied with medicine without question. However, when resources are scarce, it is women’s healthcare that is the most dispensable.

References

  1. Gordon Stables, The Girl’s Own Book of Health and Beauty, London: Jarrold and Sons, 1891.
  2. Henry Maudsley, ‘Sex in Mind and in Education’, Fortnightly Review, 15, 1874, 466–83.
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World Mental Health Day by Agoraphobic Feminist

August 13, 2014

(Cross-posted from Agoraphobic Feminist)

Originally posted October 2013

Since today is World Mental Health Day, I thought I’d take the opportunity to write something, since it’s been ages since I’ve actually blogged!

Also, on this day in 1903, Emmeline Pankhurst formed the Women’s Social and Political Union to fight for women’s rights in Britain – so today is doubly important!

I’m probably preaching to the converted here, considering someone who doesn’t relate to feminism/doesn’t have any interest in understanding mental health issues probably won’t be reading this blog, but I felt I had to write SOMETHING, at least.

I want to raise awareness of the crippling illnesses of depression, anxiety and agoraphobia.

Some may argue that as these illnesses aren’t ‘physical’, they aren’t debilitating – I argue that although these illnesses originate in the brain, and in the case of depression are mood disorders – they definitely DO have physical side-effects.

My agoraphobia prevents me from going outside, so I don’t get the benefits of exercise or the Vit D from sunlight that I badly need. This, coupled with the lack of motivation due to depression means that I’m also overweight because the majority of the time I can’t motivate myself to cook a healthy meal.

It’s a vicious cycle.

Being overweight adds to my depression because I look at myself in the mirror and consider myself too ugly to be seen in society.

Being overweight also makes me worry constantly about the pressures I’m putting my body under. Every minor symptom (e.g. palpitations, leg pain, headache) will be blown out of all proportion by my anxiety. I’ve had countless scans, tests etc. to check there’s nothing physically wrong with me. The doctors say I’m perfectly healthy. I don’t believe them.

Being unable to go out means that I can’t work unless it’s from home. This severely limits what I can do, and it contributes to my depression as there are so many things I NEED and WANT to do.

The majority of the time I get my family, my boyfriend, or my friends to do favours for me, with strains my relationships with people.

Recently my anxiety has decided to make me worry about the medication I’m taking, so I stopped taking it. I’m supposed to be taking 40mg fluoxetine and 20mg mirtazapine, with 5mg of diazepam when I need it.

I’m well-versed in the side-effects of fluoxetine, as I’ve been taking them on-and-off for years. The mirtazapine is another matter, though. I’m not even going to Google it, as I know I’ll end up reading the side-effects, or some anecdote from someone they didn’t work for, and be even less inclined to trust them.

I will be starting the medication again soon, as my family have said that I’m better off with it than without it. We’ll see.

Another thing I wanted to mention is the fact that there are no set targets for mental health treatment within the NHS, which is something that’s always confused me but I’ve never thought to bring up until I saw it mentioned on the news a couple of days ago.

The story was about a young woman with bulimia and anorexia who had been made to wait 18 months for treatment. Instead of waiting, she has taken her care into her own hands, which I completely admire, but it definitely shouldn’t be this way.

If you’re diagnosed with anything physical – from a broken ankle, to epilepsy, to cancer – you’re put on a set pathway that dictates what treatment you need, and there are set timeframes for when you need that treatment.

With mental health issues, this is, unfortunately, not the case most of the time.

Now, I understand that mental health issues vary greatly from person to person, but in my opinion it seems like a lot of healthcare professionals take a shot in the dark when it comes to diagnosing and treating mental health patients.

I’m still researching this, so I honestly don’t have all my facts yet. In my experience, though, every healthcare professional will bring their own opinions to the table when they decide how they want to treat you, which is very, very wrong as it has confused me and made me less inclined to trust healthcare professionals.

The item I saw on the news did state that there will be better guidelines come 2015 – but I worry about the people who will suffer badly between now and then, and those who have already suffered.

It’s not only the patients who will benefit from better guidelines, but healthcare professionals too, as they will be less inclined to include their own opinions, morals or beliefs when it comes to diagnosing and treating someone.

My intention is to join (or set up) some sort of pressure group, the main aim of which will be to see guidelines put in place a lot sooner than 2015, and to change the way things work right now.

Some may call me naïve, and I myself know I’m not the most educated person on the subject, but when I see people suffering, all I want to do is help.

If anyone has any ideas or opinions for me, please comment below or message me. I’d be really grateful.

Spread the word – it’s so important to keep the conversation about mental health going!

AF x

Agoraphobic Feminist: I’m a versatile freelance writer that suffers from depression and panic disorder with agoraphobia. My writing covers a wide range of issues including feminism, equality, social issues and mental health.” If possible, I would also like to include the following links: (@AtHomeActivist)

Categories: Featured Blog, Women's Health
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Fertility and the Media: Unravelling the Hype by @lisaaglass

June 7, 2014

(cross-posted from Femme Vision)

Originally published 30.09.13

Each week in the UK, news and feature pieces on fertility, pregnancy and childbirth proliferate in the mainstream media, in tabloids and broadsheets alike. Stories based on results of clinical studies on topics such as advances in fertility treatment, practices to ensure a healthy pregnancy and so on appear on a regular basis. But how accurately is the science being interpreted, how much is being omitted and how misleading are some of the headlines?

Headlines such as ‘1 in 3 will be infertile in 10 years’ (Daily Mirror, June 2005) and ‘Babies given Calpol and other forms of paracetamol are more likely to develop asthma’ (Mail Online, November 2012) certainly grab readers’ attention, but they also cause fear and anxiety in parents and prospective parents, who may not have the relevant medical knowledge to be able to look objectively at the evidence presented. (For those who are aware of it, the NHS does a valiant job of combating some of the inaccuracy and misinterpretation of clinical evidence in these stories with its Behind the Headlines section of the NHS Choices website.)

The commodification of fertility and childbirth  

It is a sad fact that there is a high level of commercialisation around women’s health, which has undeniably increased in recent years, as health services become privatised. The areas of maternal health and fertility treatment are particularly affected. Vicky Garner wrote recently of seeing sales reps from a commercial ‘parenting club’ lurking on maternity wards handing out child benefit forms. Under the guise of offering support to complete the form, they were taking down the details of new mothers with a view to contacting them to market their services. She argues that the reps exploit women who are at their most vulnerable and anxious to give their newborns the best start in life; an anxiety that is heightened by the scare-mongering headlines we see every day.

When it comes to fertility treatment, it is easier to see where there are opportunities for profit to be made by private companies, given that fertility treatment is not universally available on the NHS (eligibility depends on where you live and other criteria). It therefore falls to private clinics to offer IVF treatment, and they can market and advertise their services as they wish.  However, as Miriam Zoll wrote in an op-ed in the New York Times, ‘marketing and advertisements’ play their part in selling hope to ‘customers who are at their wits’ end, desperate and vulnerable’. Zoll speaks of the ‘debilitating trauma’ associated with failed IVF cycles and treatments, highlighting that, though fertility clinics offer, advertise and market services to paying customers as if they were any other for-profit company, when treatment fails it takes a significant psychological and emotional toll.

Hype and hope

A recent event at City University, London, looked at the intersection between science, the media and public engagement, in reporting advances in fertility treatment. The meeting, entitled ‘Hype, Hope and Headlines: How Should Breakthroughs in Fertility Treatment be Reported?’ questioned where responsibility should lie for accurately reporting advances in fertility treatment. Speakers Prof Simon Fishel, Managing Director of the CARE Fertility Group, who was part of the original team whose work produced the world’s first IVF baby in 1978; Prof Nick Macklon, Professor of Obstetrics and Gynaecology at the University of Southampton, and Director of the Complete Fertility Centre; and Dr Hannah Devlin, Science Editor at The Times, discussed the issues around this controversial topic.

Ahead of the meeting, Profs Fishel and Macklon and event organiser Connie St Louis spoke on BBC Radio 4’s Woman’s Hour. St Louis said that PR teams at IVF clinics often put out ‘overblown’ press releases, and she cautioned science journalists to be wary when producing stories based on clinical trials, particularly when a study is being publicised by the organisation that funded it. She also pointed to the lack of balanced argument in healthcare stories, and said that journalists should seek out a range of expert opinions in order to include different voices in stories on IVF.

On the other side of the argument, Fishel, though he agreed with the need for robust reporting of results and for peer review, cautioned that the best must be done to push the science of the field forward via mainstream media.

The City University event following the Woman’s Hour discussion was organised by the Progress Educational Trust (PET), an independent charity that aims to raise awareness of embryo and stem cell research, genetics and assisted conception and to engage with policymakers and medical professionals to inform debate. Fiona Fox, Founder and Director of the Science Media Centre – a charity that improves public trust in science by persuading scientists to engage more effectively with controversial science stories in the media – chaired the meeting.

Media engagement

Fishel stated his position on the debate topic, saying that information on developments in reproductive technology must be accessible to patients as and when it becomes available. As the pace of reproductive medicine moves so quickly, he said, it takes time for cutting-edge technology to filter through the medical profession, meaning that GPs and even some specialists do not understand or appreciate the breadth of the work done in fertility research. He pointed out that even the National Institute for Health and Clinical Excellence (NICE) can be too slow to issue guidance when seen from the perspective of a couple seeking new, improved therapies. When looking for clinical evidence to recommend a fertility treatment procedure, it is problematic to consider randomised, double-blinded, controlled trials to be the ‘gold standard’, he said. Because of their lengthy duration (15 years), by the time the results are available it will be too late for many couples, he argued, suggesting that other types of trials, such as cohort observational studies should be considered.

It is not always easy for journalists or the public to grasp that all scientific knowledge is provisional, he said. In other words, science is progressive, with improvement and advances being made all the time; however, the time in which a couple want and are able to have a baby is limited and they should be able to be access information on all current treatment options. The key lies in responsible communication to the media, he argued, so it is up to trial investigators, clinics and press officers to accurately communicate their evidence to the media and it is up to the media to look at the evidence before reporting.

False hope

Presenting a contrasting view, Macklon argued that when a couple see a headline proclaiming breakthroughs in fertility research, there is a danger of giving false hope that they will not only be able to access this new treatment, and that it will be successful. A relationship with the media is necessary to raise awareness and encourage funding of potential new treatments, he acknowledged, but if the relationship between clinics and the media is ‘too cosy’, this can lead to false hopes being raised. Macklon, in his argument, reminds us that there is a third party, the potential patient, who stands to lose out financially and emotionally, when ‘unproven technology’ is being offered in IVF clinics for profit. The patients are the ones paying the price for uncertainty, he said.

Devlin countered Macklon’s argument by accusing him of being ‘patronising’ to potential patients. She acknowledged that, as a journalist, IVF stories are always welcomed as the science is ‘easy to follow’ and is relevant to everyday life, encapsulating controversy, morality, life-changing events and they can be illustrated with ‘cute baby pictures’. Agreeing with Fishel, she posited that it is the job of journalists to filter out anything that might give false hope to patients, but that all developments, no matter what stage they are at, should be reported. She also highlighted that there is pressure from editors to cover stories reported by the majority of most national papers, to maintain competitiveness.

Considering responsibility

In the discussion following the speakers’ presentations, there was clearly a split in the audience between where it was felt that ultimate responsibility should lie for the accurate communication of clinical results to the public. One commenter suggested that patients seeking fertility treatment would not go to a medical journal to seek out the original research, thereby placing emphasis on the newspaper/journalist to offer balanced and accurate information. Another questioned the role of the PR or press officer in drafting a press release free of language and phrasing that might appear to sensationalise the facts. Concern was also raised over not withholding or omitting information and the need for the wider debate to move forward.

It was also emphasised that other expert opinions should be presented in a story and this would be the journalist’s responsibility to present alternative viewpoints. Macklon pointed out, however, that some doctors may have a vested interest in recommending a particular treatment (or, conversely, in not recommending it).

Does knowledge empower?

Fertility treatment is unlike any other area of medicine in many respects. Being largely provided in private practice, there is the market and, therefore, the finance available to plough into technological development; however, this means that the availability of evidence from (the so-called ‘gold standard’) randomised, controlled trials cannot keep up with the pace of development or the demands of the consumer/patient.

From the speakers’ presentations at the City University event and the discussion that followed, it seems clear that a collaborative approach is needed in order to responsibly and accurately communicate developments in the field of fertility treatment. Perhaps, as one commenter highlighted, this all points to the need for better-quality are more accessible patient information in the UK. But in lieu of this it would seem that it is the responsibility of all involved – press officers, journalists, and clinicians to communicate accurately and put in context any available information. Mutual trust, it would seem, is crucial when communicating science to the public.

Conclusions

The argument that knowledge is empowering for the patient certainly has merit, but it is important to bear in mind that both the media and the clinic stand to make commercial gain from the publishing of fertility stories. And as long as treatment remains in the private sector, there will remain a ‘cosy’ relationship between the media and the provider, however well hidden; the danger is that the patient, who should be at the centre of the discussion, will be open to exploitation.

Categories: Featured Blog, Reproductive Justice, Women's Health
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Birth Story by @Jo_Planet (Content Note for Birth Trauma)

May 9, 2014

(Cross-posted with permission from Opinionated Planet)

 

It’ll be Little Planet’s 11th birthday on Monday, and this afternoon, I was reminded about her birth. To be honest, I try not to think about it too much. ‘Serene’ ‘whale music’ ‘water birth’ or ‘natural birth’ all bring me out in hives when I think about it – they remind me of my (wonderful) midwife who used these words when suggesting I write a Birth Plan. I’m going to tell you the story – but I’ll start by saying if you’re pregnant, don’t read it. Please. If you’re squeamish, it’s probably not for you, either. If you follow me on twitter, you’ll know it had a happy ending, but I’m aware that many women who have a similar birth experience to me aren’t so fortunate. I send you my love.

I’ll start with how I actually got pregnant, (don’t worry, I’ll not be doing an impersonation of an embarrassed teacher!), seeing as I was adamant that I never wanted children of my own.

I met LPs dad in a pub when I was pissed, his friend was going out with my friend. He was funny, and we ended up dating. One weekend, he picked me up from work & had arranged a ‘romantic’ break to Torquay. (I know. The signs were all there!) He’d packed a bag, remembered my hair dryer and booked a B&B so off we went. We had a night out in Torquay, and who did we bump into?! Why yes, his FAMILY who were also there on holiday. Now, LP’s dad wasn’t the sharpest knife in the drawer, but his brother couldn’t cut warm butter. I got progressively more drunk in order to drown out their family idiocy, and it actually turned into a pretty good evening. When we got back to the B&B, condoms were missing from his ‘expert packing’. Just once can’t hurt, can it? It actually wasn’t even quite once, so I was pretty sure I’d be safe. <hollow laugh>

A week later, I was thoroughly bored of the ‘funny’ man I was dating, so I decided he had to go. I didn’t see him for a few days, and so I just left it to ‘cool off’. A week or so later, my period was late…. I bought a pregnancy test & asked him to come over so I could do the test. He arrived, following the obligatory ’4 pints with the lads’ and I’d already done the test, fuming in rage that he couldn’t be bothered to be present. (This turned out to be his MO, more on that another time).
I was pregnant. He, you may be surprised to know, was delighted. So delighted, that I didn’t hear from him for 2 weeks, as he was ‘celebrating’ impending fatherhood.
That’s enough about him now, needless to say, he’s not a huge feature in our lives.

Within a few days, I’d started to feel sick – really sick. I spent lots of time with my head over the loo, vomiting up anything and everything that I put into my body. Even water. Even ginger nut biscuits. Everything. When women have ‘morning’ sickness & tell you – don’t offer them solutions unless they ASK. They will have thought of everything, and probably tried it. Twice.

Four weeks later, I was hospitalised with hyperestemis, and spent a week on the gynae ward, on a drip. I was 10 weeks pregnant. ‘Not long now’, the people said. ‘It’ll settle down after 12 weeks’.
I vomited continually until I was 20 weeks pregnant – losing weight. I spent part of the 2nd trimester looking like I’d been dug up. Blooming, my arse.

At 21 weeks, I had a little bleed, so I went into hospital as instructed, where they declared my blood pressure to be ‘a little high’ and prescribed a week of bed rest. Lovely, I thought. I was off sick from work with the sickness anyway, being instructed to stay in bed was just what I needed.
Until I found it was a hospital bed. I wasn’t allowed out of bed unless I needed the toilet, or a shower.

January ended with me being allowed out of hospital, as they medicated me to control my blood pressure. As I came into February, I started to feel better – more energy, the sickness had settled to just the mornings & late evening, and I felt much better – including the development of a ‘bump’, which made me feel less of a malingerer! At last, I could wear my maternity jeans with pride! See – I’m not putting it on! I’m pregnant AND poorly!

I was put into consultant care, with appointments every fortnight – not much fun, and a wholly medicalised experience that I’d not planned for. Regardless, I attended my appointments, feeling utterly fed up at the way my pregnancy was progressing.

February brought good news and bad – I was made redundant, along with the rest of my team – 3 of whom were pregnant…. I knew I wanted a change of career & the redundancy payout gave me some financial freedom to decide which direction I might head in. I signed the forms & kissed my engineering career goodbye.

The middle of February brought another one of those consultant appointments. I was feeling better, less tired, but a bit breathless – all to be expected, I thought. As I was checked over by the midwife prior to seeing the doctor, she took my blood pressure.
‘Go & have a lie down, Joanne. Let’s see if we can get this BP down’.
The next reading was even higher, so they had another week of bed rest planned. This time, it was absolute bed rest. No wee breaks or trips to the shower for me! My goodness, bed rest is BORING.

March came – and I was allowed home! Yay! The deal was – I had a midwife visit the next morning. I would have agreed to anything, so fed up was I of Ward 14! My lovely community midwife visited the next morning, and took the dreaded blood pressure…. ‘Oh Joanne I’m really sorry. We can’t leave you at home with your BP so high’. I’d not even unpacked my bag, and I came to realise that this was the best way…

To save boring you with the minutiae, this happened a number of times – a few days in, a night at home, a midwife visit, a few days in, a night at home, a midwife visit. You get the picture. Until I got to 33 weeks – when I was IN UNTIL BABY ARRIVED. I had pre-eclampsia. My body was swollen, I had a face like the moon (and like thunder, much of the time!) and blood pressure so high that they thought it might kill me.

Bored, frustrated, hot (it was summer 2003 – bloody boiling!), bored, fed up, furious with the foetus, bored, raging with the consultant and far too knowledgeable about the midwifery off-shift antics!!

Finally the day arrived when my body could take no more. I was 37+3 – I was being induced as I had eclampsia. I saw the consultant, who breezed through the details of ‘induction’, telling me that my cervix would probably take a bit to ‘get going’.
I believe ‘get going’ is a euphemism for ‘need tearing open with metal probes, fingers, manky looking gel pessaries and brute force’. I called my birthing partner Kaz, and got settled in, ready to get birthing.

4pm on the Friday evening – we were off! A midwife tried to sweep my cervix, but it was ‘solid’. I knew this wasn’t good. In came the pessary, and I was sent for a walk. A long one. Round & round the hospital. And again. I had this conversation with a midwife on my way around the block:

M/W: how’s it going, Joanne?
Me: terrible. I’m not having any pains, or anything.
M/W: give it a chance!

Another turn around the block. Kaz bought me ice cream & we sat outside in the sunshine. Then the pains came. Big, long, hurty pains. We walked swiftly back to the ward, certain that this was It. I met the same midwife on the way back: ‘See Joanne?! You just needed to give it a chance!’

They lay me down to monitor the heartbeat, gave me two paracetamol and examined my cervix again. It was still impenetrable. They planned another pessary, then we’d be off to Delivery Suite. Easy peasy!

Ha. If only. 4 women arrived on the ward, all progressing much quicker than me – laying down to have the monitor on had slowed my contractions to a standstill. It was 8pm. The night shift came on, Delivery Suite was full, they decided to medicate me with a tamazepan to help me sleep, and they’d try again in the morning.

Saturday morning came, and I was determined I’d do it TODAY! I was thoroughly fed up & tearful, I just wanted it over and done with.

New pessary, new route around the hospital. I walked and walked and walked. And ate ice cream. It was still Hot.

Saturday evening, minor contractions, more paracetamol, more walking. My cervix was not considering thinning. On Saturday night, there were no beds on Delivery, so they followed the same routine. Sleep-inducing medication, try again tomorrow.

Sunday – this was the day I’d do It! Kaz was really bored by this time, but getting into her role as Birthing Partner. She called my mother to give her a progress update, only to find she was On Her Way. Now, my mother is a whole other story – I was getting this baby out as soon as I could, if she was arriving imminently!

The registrar decided they’d have ‘one more crack’ at opening my firmly closed cervix. I had another pessary and a bed on Delivery Suite. Oh – and my BP was 150/195. Time for action.

I was given another pessary, and some gel – and then I was put on a drip to ‘speed things up’. My slow progress & BP meant that I had to be constantly monitored, so I had to lay on my back. My contractions felt forced, painful, I was tired. My BP was fluctuating & the heartbeat monitor showed baby was a bit unhappy.

Sunday mid morning – here comes the consultant… On a sunny Sunday, I knew it was serious. ‘Break her waters’, he instructed. The midwife gave me the gas & air pipe. What do I need that for? I said, innocently. Breaking waters doesn’t hurt, does it? ‘Just use it if you need it, Joanne.

Legs akimbo, facing the door, the registrar crouched down between my thighs ‘I’ll try & be gentle Joanne, but use the gas if you need to’. The pain was agonising – I’m wincing now, as I type this. My cervix wasn’t dilated at all, so she forced open with some kind of implement that looked like a crochet hook, and tore at the amniotic sac. I screamed, sucked on the gas like my life depended on it, and the registrar, midwife & wall were covered in bloody mucus.

Kaz had been sitting quietly, in a very hot room, with me screaming & crying. She saw the blood, and made a dash for the door. She pulled it open, crashed into the wall, stood by the midwifery station trying to get out of the ward and fainted. Onto her face.

The door was wide open, as the team caring for me left and rushed to her side – she’d taken the weight of the fall on her cheek.

“Fucking hell you selfish bastard! Way to make everything about you!!” I screamed, as she was put onto a stretcher and taken to A&E.

The midwife patted my hand. ‘Don’t worry Joanne, we’ll soon have this baby out.’

Famous last words.

The shift changed again, and in came the Scary Midwife. I’m not going to name her, but my goodness I’m tempted. SM introduced herself as the senior midwife, and I didn’t like her one bit. My mother had arrived by this point, so I told her I wanted a new midwife. My mother loves nothing more than a ruckus, so off she went to ask.

“Joanne – you are High Risk. I haven’t got any suitably-qualified midwives available to look after you. You’ll have to manage with me” said SM, disapprovingly.

I burst into tears & said I was Going Home. She heard me, and came back to say there was another midwife available, who was recently qualified (see what she did there?!), and she’d supervise from a distance.

The new midwife was lovely, really put me at ease. She took my obs & decided I needed to see the doctor. In came the consultant, no doubt interrupted during Sunday lunch. Frowning, he looked at my file & said I had to have an epidural to bring my BP down. It was 185/215. I was in a bit of pain, but not much, and I really didn’t want to have to lay down constantly. But with my BP the way it was, they were worried I might have a stroke. The Anaesthetist arrived, the needle in my back did its job & off I went to sleep for an hour – with the sound of the snooker on in the background.

I was examined an hour or so later – still no movement in my blasted cervix, despite my waters being splashed all around the room. My contractions were stilted, baby was still a bit unhappy, but then perked up, so I was given some toast & told to ‘relax’.

Later in the evening, news came from A&E that Kaz had a fractured cheekbone, so it was just going to be me and my Mother.

Late evening came, and the registrar checked me over. Yet another check of the cervix, no change. Regular contractions, no pain due to epidural.
The registrar decided that she’d leave me overnight with no further interventions & they’d take me to theatre for a caesarean on the Monday morning at 8am. Because id had an epidural and was high risk, another lovelier midwife was to be my support overnight (I couldn’t be left alone as I’d had so many interventions & had an epidural in).

I was relieved and scared and fed up & exhausted – but I settled down with the snooker, had yet more toast & then settled for sleep. Lovelier midwife talked me down when I was stressed, and I settled to sleep.

I woke up with a start, when the BP machine attached to my arm wouldn’t stop inflating; the midwife checked me over and called for senior staff. It was 2am.

Lovelier midwife: I think we should get the Reg out to look again
Snr M/w: they’re leaving her, do you want to be responsible for getting her out of bed at 2am?!
LM: she needs to be seen. Heart rate is dropping & not recovering.
Sm: be it on your head… But it’s likely they’ll still leave her.
Me: I am HERE you know!

The registrar arrived at 2.45am – and by this time there was panic in the room. She examined me, and shouted ‘CRASH’. Now, I’d watched enough Casualty to know this wasn’t good. I’m shaking writing this – 11 years ago, and yet I have a dry mouth, racing heart, and a feeling of panic that takes me back into that room.

CRASH 2 CORD PROLAPSE the registrar shouted, as the room filled with people.

A nurse came towards me with a piece of paper – ‘sign this Joanne, you need an operation to save baby’s life’. I signed it, with nothing that resembled my actual signature!

A nurse came towards me, waving a razor. ‘DONT CUT ME OPEN WITH THAT!’, I yelled.. ‘I need to remove your pubic hair Joanne, keep still’

‘Drink this Joanne – it’ll stop you from being sick’. As my trolley was disconnected from all the equipment & pushed towards theatre, I vomited up the stuff that would ‘stop me being sick’. All over the only man in the Crash Team. Go me 😉

We arrived in theatre and it was bright – so bright.

‘Joanne – breathe in through this mask’

‘Is my baby going to die?’

‘We’re going to do our best to make sure you’re both ok’

‘This is iodine Joanne I’m going to paint it onto your tummy’

‘DON’T CUT ME I CAN FEEL WHAT YOU’RE DOING. DON’T CUT ME YET. DON’T CUT ME. IS MY BABY GOING TO DIE?’

‘We’re putting you to sleep Joanne, your arm will go cold, count backwards from 10′

’10, 9, 8…’

When I woke up, they told me I’d had a baby girl at 3.22am but she was ‘a bit cold’ so they had her in a hot cot. I had been sure I was having a boy (call it my mothering instinct!), so the poor little 5lb 15oz mite didn’t even have a name.

We had skin to skin, and I fed her, then we slept. For hours and hours.

I woke up and asked what had happened – I have to be factual here because it’s still so scary. This is an excerpt from my notes.

Emergency c-section.
GA administered – suspected inter-uterine death.
<drug info>
Apgar 1 @ 1 minute
H/r 40
O2 & compressions
Nil reflex
blue

Apgar 2 @ 3 mins
02
H/r 60

Apgar 5 @ 7 mins
02
H/r 80

Apgar 6 @ 10 mins
(Etc)

Apgar 7 @ 12 mins
(Etc)

Apgar 9 @ 15 mins
(Etc)

She recovered, and so did I – after a 2 year bout of PND. She was well, and although the paediatrics team warned me that she might develop differently to her peers, she met her milestones as expected and is as healthy as I could wish for.

I started writing this piece because she’s 11 on Monday, and I’m finally able to write about our shared trauma. Recovering from her birth took me a lot longer than I expected. Although I’m still shaking.

Phew. I think I’ll put the kettle on!

Opinionated Planet: a radical feminist blog by women for women on male violence, women-only spaces and sports

Categories: Featured Blog, Feminist Mothering
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Feminism, Mental Health and Inclusion by @LUBottom

April 28, 2014

This post was written for A Room of our Own: A Feminist/ Womanist Network by @LUBottom.

 

I took part in a discussion with a few Twitter users (including @Roomofourown) the other day in which we spoke about the appropriation of the term “depressing” in a webchat about the effects of fourth wave feminism. This conversation took many meandering paths and we were pretty unanimous in our opprobrium of medicalised terms to discuss everyday experiences. We spoke, at length, about the myriad ways in which we, as women with disabilities, are erased from the discourse of mainstream feminism. On the one hand my instinct is to ignore the word “depressing” as something which has become deeply assimilated into our everyday conversations, but on the other I am aware of the hypocrisy of ignoring such terms whilst feeling offend by the use of other medical terms such as “schizophrenic” or “retarded” as adjectives for negative terminology.

My life has been full of a variety of tragic strands which, if sewn together, would make a large shroud. I have written about them on several occasions: my experiences as a person with disabilities, my fight against anorexia, my life as a survivor of rape, my battle against post-natal depression & my general feeling of being ostracised by the world, either because of my disability. Those who read my blog will be familiar with my life. But what I wanted to write about is my particular experience with depression and why I take issue with it being co-opted as a term to describe non-medical annoyance or frustration and why non-disabled feminists need to make more careful choices regarding the words they use.

I entered psychiatric inpatient care on a Sunday, much like any other, in July. There was nothing particularly special about that weekend, neither for the rest of the world nor for myself. It was by random chance that I had decided that that weekend would be my last. On the Friday I took a large dose of Valium, nothing happened, other than a long sleep and lost memories, and so on Sunday I decided I would give it a harder push and took an overdose of Baclofen, my muscle relaxant. I didn’t even get very far into this second overdose, due to the restrictions on my liberty (due to being a wheelchair user largely confined to bed), before the ambulance and police were called and so, before I could cause myself significant harm I was carted off to hospital. I don’t remember much of what happened next. But somewhere along the lines my indignation about my right to die led to me receiving a ticket to a psychiatric hospital.

When you first arrive for check in one of the first things they do is give you a physical medical, it was at that moment that a hidden truth was discovered: I hadn’t eaten in quite some time. I had fallen from a size 16 to a size 6 and the jutting ribs and sagging skin made alarm bells ring in the on call doctor’s head. It was from that moment on that the ins and outs of my body became public property. Scale reading after painful scale reading was meticulously recorded by the medical staff and weekly review meetings centred on whether they had convinced me to eat yet.

Every day a menu card was brought to me in my room and every day I would have to explain to another member of my medical team that “I don’t eat”. There is a painting by Max Ernst called Europe After the Rain, in it sits dozens of references to eyeballs watching the painter, signifying the paranoia during WWII. This painting perfectly exemplified the sensation of being watched which I experienced. In reality, my medical team were solely invested in keeping me alive but in the mind set I inhabited for that time they were the enemy who sought my destruction. All food was poison to me, a rotten carcass with detrivores spilling out of its remains.

Nurses, doctors were only seen on a weekly basis, tried to talk me out of my depression and desire to end my life. I was presented with classes in clay making, presented with dogs to pat, given sedating medications on my request, and een sent on long-spiralling guilt trips about my responsibilities to my children. Alas nothing would shift my desire to end my life. I was placed upon a course of drugs which I flouted by refusing some medications and, at other times, sneaking large amounts of laxative into my bedroom. My thirst for self-extinction was unquenchable.

I had no desire to do anything, and death occupied most of my thoughts. Indeed, the feeling of disconnection caused by starvation gave me cause for hope. No one could connect with me, because I inhabited a different plane: they were in the land of the living whilst I was somewhere nearer to death. Eventually the only thing which, ironically, sent me from my self-destructive course was the death of one of the most important people of my life. Though her death didn’t make me eat, it did stop me from being in a place of continual overdose. A desire to protect those I loved somehow caused a paradigm shift that I doubt I will ever truly understand.

When I think back to this time and compare it with my feelings about feminism the latter seems entirely ridiculous. How can something so desperate and soul destroying be used as a synonym for what equates to upsetting? That said, feminism does, quite literally depress me, specifically because of the way in which it makes women with mental illness and disabilities feel alienated and erased. The repeated instances of feminists using lazy and bungled ableist language need to end. Having a disability is already isolating, and presents women with more complex oppressions, feminists need to make a conscious effort to be more aware of these issues and seek to support their sisters. Perhaps the question of whether feminism is depressing wasn’t so silly after all.

 

bottomfacedotcom: proud owner of lady parts: Writes, makes vulvas, swears. Past caring. Home ed. Parent of child w/ ASD ADHD. Has ME & FMS. Lucy tweets at @LUBBottom. She also has an etsy page: Little Shop of Vulvas

Categories: Featured Blog, Women's Health
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Feminism and the Social Model of Disability by Heather Downs

April 19, 2014

This piece was written for A Room of our Own:

Feminism’s rejection of unrealistic oppressive ideals of the female body fits well with the social model of disability, the idea that the social and physical environment rather than our impairments is what leaves us unable to do the things we want.  While our condition is the result of bad luck, our social and physical environment is subject to political choice and control.  Whether we have ramps or stairs, lifts or escalators are results of conscious choice and impacts on who are invited in or excluded.  Likewise, being female is not inherently a problem unless you live in a male dominated society in which case female biological sex necessarily entails policing of the adoption of feminine gender as a woman.

The performance of femininity is an oppressive ubiquitous reminder of the inferior status of women and girls – just look at examples like Julia Roberts’ unshaved armpits, remembered years after they were shockingly visible at a 1999 premiere; the ‘no make up’ selfie campaign in support of a cancer charity; every advert for menstruation products guaranteeing ‘discreet protection’.  All this and more comprise the everyday requirements for merely leaving the house in an acceptable condition.  What happens if it is actually physically impossible to perform the dozens of intricate rituals necessary to reach the required standard?   The fact that I had already rejected so much on political grounds has certainly eased the process of increasing physical inability.

Finding myself unable to get my arms above shoulder height for long enough to wash my hair myself or do anything more complicated than brush it; hold a bra long enough even to do it up the ‘wrong’ way before twisting the hooks to the back; solve the ‘embarrassment’ of cracked heels and rough skin with softening foot balm ‘for her’; put the butterfly backs on earrings and innumerable other examples of mundane trivia that go towards the construction and performance of femininity – all this was swept away in the inexorable progress of my disability.

So, in many ways, feminism jettisons by choice the same things physical impairment precludes whether you want them or not.  Feminism might be pro-choice, but multiple sclerosis isn’t.  So many of my associations with disability are connected with socially defined aspects of womanhood and while some are cheerfully discarded, others aren’t.  The numb hands from MS reduced my typing speed from 80wpm down to the slow peck of one finger, destroying a skill which has personal benefits despite its lamentable history of ghettoised low pay; that same numbness robbed me of the touch of my new-born daughter’s skin.  For a few years, a toddler in a pushchair was a useful walking aid though I could never manage the clips on the straps; when I needed wheels myself, my daughter was old enough to play on my electric scooter with her friends.

I enjoyed baking and decorating birthday cakes for my daughter when she was young; fortunately she had moved beyond that stage by the time I became unable to do it; but it is still frustrating to be excluded from so much trivia and handing over selection of wrapping paper and birthday cards to her father because the time and effort involved is so disproportionately high in relation to the importance of the thing itself.  And yet…the cumulative effect of all the unimportant trivia amounts to a significant proportion of my actual life.  It doesn’t matter which pair of knickers or socks my partner brings me.  Or t-shirt; it will be under a sweater.  Or black trousers or black leggings – not much difference, they’ve all got elasticated waistbands.  Each one of those little things is unimportant, but add them together and my partner has chosen everything I’m wearing – because it’s easier.

Just as I started writing this, I came across Sister Trinity on Veet – a standard feminist critique of the porn –influenced aesthetic of hairless women.  She contrasts bald, prepubescent Veet-treated shins with the legs of a mature woman and tells herself ‘they’re legs.  They’re for walking; they serve the purpose of transporting me from one place to the next’.  What if your legs don’t serve a purpose, don’t transport you, don’t support your own weight?  Are my hairy, crippled legs literally neither use nor ornament?   The contrast between the notion of the feminine body being for decorative purposes only and the masculine ideals of strength and action are both inappropriate for disabled women.  Disability isn’t solely concerned with accessible buildings – we must also recognise the lived reality of pain, fatigue, frustration.

And I haven’t even mentioned sexuality.  That’s another story.

Categories: Featured Blog
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