(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 : @[email protected] 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: @[email protected] < accessible!’ It may not even be accessible for someone whose ONLY access need is wheelchair use.”

“@averrer:@[email protected] 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: @[email protected] 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

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

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 Hippie: Mad, 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)