Making Music Accessible by @JenFarrant

Cross-posted from: Jen Farrant
Originally published: 13.01.17

I’ve been published in High Notes, the Making Music publication. It focuses on making music groups accessible to people physical difficulties.

I have written extensively how playing in a band has made me a much better musician, but also how it has helped me to win back my sense of self, and something to focus on other than just being ill. It has helped me to make new friends and I adore going to band each week.

IMG_8215This Wedesday was a very bad day for me (it’s the cold and damp), I struggled to get out of bed and I had to have a bath to make the pain bearable. I was drunk walking everywhere which is where I stagger about even with my walking stick. None the less I went to band in the evening, even though I felt dreadful.

We working on brand new pieces and they are all geeky, which is fantastic as it means I actually know the music. There is nothing like playing music in a group, it creates a resonance in me which is difficult to describe. I can tell you that I was grinning about ten minutes in.
Read more Making Music Accessible by @JenFarrant

Pride, prejudice and pedantry by @wordspinster

Cross-posted from: Language - A Feminist Guide
Originally published: 03.03.17

Last year I discovered the perfect gift for the supercilious arse in your life: a mug emblazoned with the legend ‘I am silently correcting your grammar’. grammar-mugThe existence of this item testifies to the widely-held belief that sneering at other people’s language-use is not just acceptable, it’s actually a virtue. When the subject is language, you can take pride in being a snob; you can even display your exquisite sensitivity by comparing yourself to a genocidal fascist (‘I’m a bit of a grammar Nazi: I can’t bear it when people use language incorrectly’).

On Twitter there’s a ‘Grammar Police’ bot whose mission is to belittle random strangers by tweeting unsolicited corrections of their ‘defective grammar’. Because, according to its profile, ‘publishing defective grammar abases oneself’. 
Read more Pride, prejudice and pedantry by @wordspinster

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

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

Blissful yoga via @jenfarrant

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

PIP – Permanently Irritation Persecution? by @JayneLinney

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

I’m mad as hell and I’m probably going to take it a bit more, if I’m honest

Cross-posted from: No Humiliation Wasted
Originally published: 25.01.14

Well, people are shitheads.

The Guardian ran a blog post by a white man about why a photo of a white woman sitting on a chair made to look like a bound, near-naked black woman wasn’t racist, not even a little bit.

NoHum_angry

xoJane, a site I’ve written for and whose articles I’ve previously enjoyed, published a piece inviting readers to share stories about the “craziest” people they’ve ever met, i.e. people with severe mental illness. And readers responded in their hundreds because hahahahahahaha it’s so much funnier to laugh at people and perpetuate stereotypes than to have a smidgen of compassion.

Disabled women are twice as likely to be abused as able bodied women and on average earn 7p less per pound, yet many of the discussions I see and hear about intersectionalitymention disability as an afterthought, if at all, and most high-profile feminists seem to be more consumed by banknotes and pubic hair than disability rights.

This stuff makes me so mad. I want to to have increasingly fraught discussions on Twitter or in comment sections, to shout, to scream, to SMASH SOMETHING, to… Oh.


Read more I’m mad as hell and I’m probably going to take it a bit more, if I’m honest

The Pro-Sexploitation Lobby and Disabled People at Life in the Patriarchal Mix

(cross-posted from Life in the Patriarchal Mix)

An article (A good one) was recently published of which a disabled feminist discusses the Liberals and their use (would it be right to call it abuse?) of disabled people to defend the sexual exploitation of women in favor of disabled men’s libidos.  This is nothing new with Liberals and their pseudo-analysis of “individual freedom”, sacrificing the needs and concerns of a group of  people, normally the oppressed are the targets, for the minute satisfactions of another group, the oppressors. Unfortunately the commentators, I am betting my savings that they are men, do not seem to understand or even argue the author’s main point about her article. These commentors seem to find it perfectly acceptable to abuse women through paid rape as long as the disabled men are happy. I will closely look at the argument that seems to be most popular with these Neo-Liberals.

I know several sex workers, all of whom chose the profession because of the untaxed income and flexible hours.

Unless this John (Yes, I am saying it) can give the names of these women, I will doubt his assertion that women just “choose” to be in the “sex industry” just for the hell of it. I wish this John can prove that women  get paid more for “having sex” with these men and not live in desolate poverty for their entire lives. His argument in his comment doesn’t even address the disableism that is often used to prove the “usefulness” of  prostitution. You cannot say a statement and then argue that it is factual without any evidence to back it up, that you happen to be male does not make your argument true.

If the first thing you think about when you hear “disabled men are not entitled to sex” is “but those women made a choice!” I am sorry but that is “moving the goal-post.” You are arguing that is not even challenging the person making one argument, you are distracting from the main point. The author of the article argues that saying that disabled people (oops, I mean men) have a “right” to sex by using exploited women because we disabled people are just disgusting things that no person would want to love under normal circumstances as the author writes

The assumption that nobody would ever have sex with a disabled person through personal choice is not only inaccurate, it’s also offensive. An infantilised view of disabled people also contributes to the idea that sex with one of us is wrong or weird, adding to the stigma and prejudice that limit our lives.

The author also argues that the assumption that all disabled people (Men, did it again) need is a sexual partner to be fully human is also insulting to the disabled people and places their worth on how “attractive” they should be as romantic partners albeit through a very narrow scope. This assumption about our “attractiveness” also ignores those who are happily married and have children (though personally I am against the institution of marriage), those who have high paying jobs, or are not shut-ins in some institution where they are fed a diet of horrible hospital-style food and medication. It also makes assumptions that if disabled men are given the option to have “paid sex” with women then they wouldn’t feel so dehumanized or think themselves as less than the Able. If they legitimately believe that feeding into the stereotype of disabled people being sexually unattractive and that only the Able can “help” them will end oppression against disabled people then they would need to re-examine their priorities.

Disabled people do not owe it to non-disabled people to exist so that Liberals can use them as a political crutch. It seems odd that disabled people seem to only be brought up by Neo-Liberals if they are of any use to the Liberal’s selfish agenda; a Neo-Liberal can talk up a storm about ‘freedom of choice’ and ‘human rights’ of the able-bodied and able-minded people but not one sound for the disabled. No discussions about access to education, no programs to get disabled people out of poverty, no discussions about the sexual abuse of disabled women and girls, no discussions about the rampant discrimination that disabled people (whether the disability is physical or mental) often have to deal with to work in society. You will never hear that from any Liberal unless it can increase the credibility or make that Liberal seem charitable.

We are not charity cases and we are not objects to be pitied by those who have never had to live our lives. We are not just things to be used to make a case for the exploitation and abuse of women, especially women in the sexploitation industry. We are not some monolithic group who needs the patronizing and dehumanizing words from the Able to make us look human. The Able most certainly DO NOT have a right to take our terms, such as ableism, and use them against the people who are fighting alongside us. The women who are prostituted also do not owe to the disabled men to exist as a mere service, women in general do not owe it to ANY MAN to be sexually subservient to them. Women should not have to sexually “service” men in an “equal” society; quite frankly I find this to be an equal insult to the women who are prostituted, it is a sad state of affairs when women have to coddle a man’s ego (and his boner) merely because the disabled man and if he does not get what he thinks he is entitled to that he is being “discriminated against” or is “being denied his right.”

Women are denied their right to live a life free of violence and hatred every single day, through various factors and these institutions are created up to make sure women stay in that place. You have to ask only a few former “sex workers” to get the full picture and the pattern that this industry and its CEOs (pimps) follow to keep women subservient and dependent. To use the disabled man’s “right to sex” as an argument for her continued servitude only rubs salt on her psychological and physical wounds especially when the possibility that she was abused as a child are likely. Unless these “pro-sex” Liberals are willing to try to not be obtuse when it comes to their real intentions and how they actually view both trafficked women and disabled people then they shouldn’t speak as if they know about the issues that affect disabled people.

Just because the man is disabled that does not mean he should be allowed special privileges to sexually abuse a woman because no woman finds him attractive; the disabled (including myself) already have plenty of issues to deal with and the right to “have sex” with a trafficked woman, who is in dire circumstances and trying to survive in a patriarchal society, is not one of them. It is not the woman’s job to take the blame for everything that happens to disabled and to alleviate that brief moment of discomfort simply because women are raised to serve men’s every whim and desire.

Life in the Patriarchal Matrix I mainly blog about feminism, misogyny, disability and activism.

Disability in the 21st Century: Why we need to reimagine work…. by @LUBottom

(Cross-posted from LUBottom)

Originally posted in June 2014

Today I had my final “work focused interview” with my Job Centre Adviser as my 365 days In the Work Related Activity Group is coming to an end. I could adjust my claim and fight with all my might, but after the horrendous time I had with them over trying to have a home assessment and the bullying I experienced at the hands of ATOS staff and the ineptitude of the DWP, I have decided to switch over to Carers’ Allowance. I will lose £2000 per year but it’s a price I’m accepting for the sake of my mental well –being.  Few people can understand how petrifying it is to have your survival entirely dependent on a brown envelope, an envelope which could come through your door at any time. To be on ESA is to have your fitness decided by none medical staff, paid to keep the balance against you, in a system which tries to erase your existence. It will be a relief to have time away from that level of fear. As such, this is a bitter-sweet time for me.

There are wounds which run deep though, and the main one is my inability to work. So many left wing friends & acquaintances have tried to convince me that work is overrated, that disabled people should simply enjoy not having to work. But what of those of us who are desperate to, even if the state was properly able to support us? The government keep selling the lie that they are helping people with disabilities into work. This is a lie. They are putting vexatious systems in place designed to make claiming a pittance almost impossible.  My work adviser has repeatedly stated that she doesn’t believe I’m well enough to work at this time, she hasn’t been able to assist me into work, there are no jobs I could currently perform.

This is an ableist world where employment is designed around the non-disabled person. Going to a place of work would entail me overcoming several hurdles.  I would need to be able to bathe on a regular basis, I would need to be able to get myself dressed every day, I would need to be able to use public transport, self-propel my wheelchair, open doors, and have the energy to maintain this every working day. With my health conditions those are insurmountable barriers. Work for me, at this time, would need to be home based, it would need to be flexible, and it would need to be for a company who accepted someone who is educated but with very little work experience. I spend my whole life looking but never find such a job.

In order for work to be truly accessible to people with disabilities we need to entirely reimagine what work looks like. Only then can people with disabilities become on an equal footing with abled workers. We now have the technology to enable home working. Companies need to seize this. Surely a government with such tight bonds with business should have the capacity to come up with imaginative solutions rather than forever just hitting disabled people in their pockets and leaving them with absolutely nothing to live off?

Today I asked my followers on Twitter what they feel would need to be in place for work to be accessible.  Here are their responses:

“@tisiphone09:@LUBOttom Employers attitudes. They think of the (possible) cons instead of all the pros before hiring us. IF they hire us that is.”

“@mburnhope:@LUBOttom @RadicalEmu Absolutely: I don’t think anything will get better for us until secure home-based jobs are a viable option.”

@RadicalEmu: @mburnhope @LUBOttom Video conferencing/shared desktops are potenially a large hammer to many barriers.”

@averrer: @LUBOttom thanks. i’d like flexible work from home. if not at home then to sit, have rest breaks, be ok to take pills, coffee & ok to stim”

@chloemiriam:@averrer @LUBOttom flexible work from home here too & UNDERSTANDING that if I’m ill I can’t help it & it’s not bc I’m lazy or unreliable”

@averrer:@chloemiriam @LUBOttom so much. was gonna say it’s mostly just get society to stop being disablist”

:@anwen : @LUBOttom@averrer Main thing is employers MUST understand there is no one size fits all. You can’t slap in a ramp and say ‘our office is >”

“@anwen: @LUBOttom@averrer < accessible!’ It may not even be accessible for someone whose ONLY access need is wheelchair use.”

“@averrer:@anwen@LUBOttom yes. i think it would help if employers gave a new disabled employee a list of all the adjustments so they could choose”

“@Openyoureyes89:@LUBOttom More places should offer work from home positions. Couldn’t see myself being able to cope with office environment, inflexible”…

“@Openyoureyes89:@LUBOttom hours, let alone actually being able to travel there and back every day”

“@anwen: @Openyoureyes89@LUBOttom YES. If I could work from home and pick my own hours I might, if certain other stuff settled, be able to work.”

“@Openyoureyes89: @LUBOttom If they’re worried about keeping in contact, meetings etc, they can always use programs such as Skype. I don’t think much…”

“@Openyoureyes89: @LUBOttom …would be lost from an employee working away from the office if technology is used effectively :)”

“@theoriesofminds:@LUBOttom @mburnhope adequate staffing so that I’m not burdened with excessive stress and overwork on top of disability.”

“@vulpeculiar:@LUBOttom I’d love to start my own business from home but covering the startup costs on ESA is impossible.”

“@vulpeculiar:@LUBOttom Even if finances weren’t an issue, the fear of relapsing further is a major barrier to well, anything really.”

Do you have any of your own ideas about how we could improve access to work for people with disabilities? Please comment below.

 

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

 

Shocked headline as fat disabled woman has fun by @PhilippaWrites

(Cross-posted with permission from the F-Word UK)

Shocked headline as fat disabled woman has fun

(originally published on 17 February 2012)

Obese woman demanding 50 hours care a week ‘went to pop concert’, screams the Telegraph. Obese? Disabled? Had a night out? This is surely an outrage to all common decency! Nobody who is fat should have fun, especially not if they are mentally ill and fat. Never mind that a good night out could have made this woman feel a bit better. Never mind that it might have been her first night out in years. Her weight and her mental illness make it an indisputably horrifying thing to have done, according to the paper.

When the paper reports that she is ‘demanding 50 hours a week care’, what it means is that she previously received care through Direct Payments, which has now been withdrawn and she is appealing for it to be reinstated.

Reading the article, despite the numerous mentions of her ‘morbid obesity’, none of her reported care needs relate to her weight at all. All of these references serve simply to stir up prejudiced feelings about this woman, to build up the readers’ outrage.

The paper reports that she has been diagnosed with a personality disorder, following traumas and bereavements, and her psychiatrist has decided that she should ‘break her reliance on the support of others’. This happens to a lot of people with personality disorders, in particular female survivors diagnosed with borderline personality disorder. Mental health services commonly do not like treating people diagnosed with BPD, or services diagnose people with BPD when they do not like them – either or both are commonly true. It is not known as the ‘wastebucket diagnosis’ for nothing.

This does not mean that people with personality disorders do not require support. The council, in court, argued that because she can play computer games, buy cigarettes and go to a pop concert, she should have all her care withdrawn, despite evidence that in the past she went for months on end without washing, due to a massive fear about bathing without somebody there.

The Telegraph then offers a poll. A poll! So that readers can vote on whether they think this woman’s care needs should be provided for.

As if constant, irrelevant references to this woman’s weight, and scare quotes when describing things like her “extreme paranoia” and “lack of motivation”, mocking her all the way through – a woman who already has mental health problems – as if all of that was not enough, let’s allow the public to vote on what they think her future should be.

The Daily Telegraph have humiliated a vulnerable woman for committing the sins of being fat (many people on certain psychiatric drugs are, it’s a significant side-effect), for having suffered trauma in her past, and for going to see The Wanted in concert, whoever they are. Their ridiculous poll adds insult to injury, and I just hope the woman in question never reads it.

 

Incurable HippieMad, disabled, feminist, radical, angry, lesbian, pacifist, warrior, geek, flower-power chick… About hippie blog? Somewhat neglected but still well loved. Bits and bobs from a British glasses-wearing, sweary, fat, disabled, atheist ex-Catholic, anti-capitalist, pacifist feminist lesbian with eclectic tastes. (@PhilippaWrites)

Nobody’s entitled to sex, including disabled people by @PhilippaWrites

Nobody’s entitled to sex, including disabled people  

(originally published in the Feminist Times)

 

Debates about the sex industry are never far from any feminist’s consciousness, and one argument that always catches my attention is that prostitution should be legalised because, without sex workers, those poor, pitiful disabled people would never get any sex.

People who have never showed any interest in campaigning against disability benefit cuts or fighting for accessible premises are suddenly preoccupied by our ‘right’ to sex? It’s disingenuous, and it hides a not-so-subtle disablism behind the rhetoric.

….

You can find the rest of the post here at the Feminist Times

Feminism and the Social Model of Disability by Heather Downs

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.