Feminist Spoons

My first guest post over at the F Word.

You may not have heard of the Spoon Theory, but it is worth a read.

A woman called Christine Miserandino was trying to think of a way to explain to her best friend exactly what it was like to live with a chronic illness, and came up with the Spoon Theory to give her an idea of what her life was like.

I find myself quite regularly using it, e.g. "I was planning to do that, but I don't have enough spoons". It is also becoming more well-known and well-used by other disabled people I know. It's very simplified, yes, but it gets the message across, as long as the person you are mentioning it to knows what you are talking about.

Friends and family are aware enough of my health problems to understand when I have to cancel things, or rearrange them. But these days, I am much less involved in feminist activism than I ever have been.

This is definitely spoon-related, and also directly related to my main local feminist group meeting in an inaccessible venue for so long that I gave up arguing with them about it. (They now meet somewhere which may be accessible, but they're not sure. I feel so thoroughly disenamoured with them that I'm not willing to test it out).

But I have also found that while individual feminists can be very understanding with my lack of spoons on a day-to-day basis, it sometimes seems less acceptable when it interferes with my ability to attend actions, protests and meetings.

I have it when there is a feminist action going on which I am not well enough to get to. I think of little else the whole time I should be there, I berate myself and feel thoroughly miserable. It then doesn't help when it is implied at a later date that those who did not attend were not committed enough, didn't care enough, aren't good enough.

This is far from universal, and many, many feminists have, or are developing, a really good understanding of disabled politics and the issues affecting disabled women. It is also not unique to feminism. The same attitudes can prevail in general lefty politics, the peace movement and more.

But historically, a lot of feminism has failed to address disabled issues. To quote from a blog post I wrote many moons ago,

Feminism needs to integrate disability politics, needs to embrace disabled women and our experiences, to be fully feminist. Excluding disabled women from feminist academia, analysis, activism and community not only is crap for the disabled woman, it prevents feminism from becoming all it needs to be to liberate women.

While I wrote that in fury about a particular situation, it still stands. It's not just about making sure we can get into the building! It's about understanding that without addressing issues affecting disabled women, feminism can never be fully representative of women, nor can it adequately support us, campaign for us or understand our lives.

Two More Posts at the F Word blog

I am still guest blogging at The F Word. My two latest posts are Send a card, save a life? about the Amnesty International greeting cards campaign and Disabled Feminism, about several things including feminist groups whose meetings are still not accessible.

Head over there, have a read!

First Guest Post at the F Word

I wrote my first guest blog post at The F-Word a few days ago, Feminist Spoons.

I have been amazed and pleased by the fantastic comments that people have left - it has been empowering and encouraging for me, and it seems for blog readers too.

When we do what we can, that's enough, it's good enough. Maybe the things we are able to do are different from the things others can do, but that doesn't make them lesser. We're all doing good :)

Testing times for disabled people

From the Guardian

Testing times for disabled people

The new eligibility test for people on sickness benefit will only intensify the massive disadvantage faced by disabled people

There are some good principles behind the new Employment and Support Allowance (ESA), but what does the accompanying eligibility test actually mean for disabled people? The first full set of figures to show its impact suggest that more disabled people could end up in poverty.

A year ago the ESA was introduced to replace Incapacity Benefit (IB). At the same time the "work capability assessment", was introduced. Now the figures showing the impact of this new assessment have been published.

Essentially, they show that the new assessment is considerably tougher than the old one, so fewer people are being found eligible for the benefit. As eventually all existing recipients of IB will also be retested under the new assessment, the figures also show us that many people currently in receipt of IB will be found ineligible for the new benefit when retested.

Their circumstances won't have changed, their impairment will not have altered, but as the new test is tougher, they will no longer be eligible.

Disabled people still face massive disadvantage in the labour market. They are far less likely to be in employment than non-disabled people, and when in work likely to earn less. A recent survey of human resources professionals found that nine out of 10 agreed that employers would choose a non-disabled candidate over an equally qualified disabled candidate. Disabled people are also twice as likely as non-disabled people to have no qualifications, and twice as likely to live in poverty. It is clear that a benefits system that does more to help disabled people to find work, while also better supporting those furthest from the labour market, could potentially play a massive role in challenging disability poverty.

The new ESA is meant to offer disabled people better and more personalised support to get back to work. But if the assessment is made so tough that people are not getting the benefit in the first place, then they will also not be getting the support that could help them get into employment.

The benefit also includes a higher rate for those not expected to return to work. Of course this is positive, but the basic rate is just £5 more per week, and will not even begin to lift people out of poverty. The best way to save money in the long term would be to ensure disabled people have the support they need to get into work.

The extent of disability poverty in the UK should be a national scandal, and the benefits system should be a key weapon in changing the situation. Disabled people want to work and there is a crucial role for an active, engaging benefits system that offers support, challenges the continuing barriers to employment and works to lift those furthest from employment out of poverty. The key must be to get disabled people the support that they need and not to push them away from it.

Help Imogen Find her Voice

I very, very rarely post appeals like this, but Imogen is a friend of mine who is in a dire situation since losing the ability to speak after emergency surgery.

Please watch this video and see if there's anything you can do, be it donating, or passing the link onto your friends.



Imogen's site is at www.imogenmay.com.

BADD Post #3

Today is Blogging Against Disablism Day 2009 (you knew that already, right?). I wrote post #1, Creative Protest against Disablism, and post #2, about Access to Healthcare for disabled people.

Some of my favourite posts from the day so far are:

• Piss On Pity
  
• Don't Assume
  
• "Mainstream" Schooling and Disablism
  
• Psychophobia 201
  
• Ableism and a Watershed Experience
  
• When My Disability Is Invisible
  
• No, I'm Spasticus
  
• A living, learning experience
  
• Well-Meaning Insults
  
• The pill that retains my humanity
  
• I Like a Good Fight
  
• Queers United
  
• Street Harassment Edition
  

Access to Healthcare: Blogging Against Disablism Day 2009

Well, it's that time of year again when we blog against disablism. It's such a massive topic that it is very difficult to know what to say, what to write about.

I want to talk about disablism within healthcare. It is a huge subject, and there are many issues, and I can't cover them all in this one post.

I will begin with the very funny, and worryingly apt, Code of Ethical Behaviour for Patients

DO NOT EXPECT YOUR DOCTOR TO SHARE YOUR DISCOMFORT
Involvement with the patient's suffering might cause him to lose valuable scientific objectivity.
BE CHEERFUL AT ALL TIMES
Your doctor leads a busy and trying life and requires all the gentleness and reassurance he can get.
TRY TO SUFFER FROM THE DISEASE FOR WHICH YOU ARE BEING TREATED
Remember that your doctor has a professional reputation to uphold.
DO NOT COMPLAIN IF THE TREATMENT FAILS TO BRING RELIEF
You must believe that your doctor has achieved a deep insight into the true nature of your illness, which transcends any mere permanent disability you may have experienced.
NEVER ASK YOUR DOCTOR TO EXPLAIN WHAT HE IS DOING OR WHY HE IS DOING IT
It is presumptuous to assume that such profound matters could be explained in terms that you would understand.
SUBMIT TO NOVEL EXPERIMENTAL TREATMENT READILY
Though the surgery may not benefit you directly, the resulting research paper will surely be of widespread interest.
PAY YOUR MEDICAL BILLS PROMPTLY AND WILLINGLY
You should consider it a privilege to contribute, however modestly, to the well-being of physicians and other humanitarians.
DO NOT SUFFER FROM AILMENTS THAT YOU CANNOT AFFORD
It is sheer arrogance to contract illnesses that are beyond your means.
NEVER REVEAL ANY OF THE SHORTCOMINGS THAT HAVE COME TO LIGHT IN THE COURSE OF TREATMENT BY YOUR DOCTOR
The patient-doctor relationship is a privileged one, and you have a sacred duty to protect him from exposure.
NEVER DIE WHILE IN YOUR DOCTOR'S PRESENCE OR UNDER HIS DIRECT CARE
This will only cause him needless inconvenience and embarrassment.

The reality is that many disabled people receive inadequate medical care. People with mental health problems can have huge problems getting physical problems to be taken seriously. People with physical impairments can find that any other symptoms or illnesses they have are dismissed. People with multiple impairments can be written off as hypochondriacs.

Perhaps doctors consider that if you are already in pain with one problem, then additional, unconnected pain is not that important. Certainly, many doctors feel that if you experience madness then surely a physical symptom is all in the mind. I've lost count of the number of times that I have been told that something treatable I'm experiencing will *not* be treated, 'because you already take a lot of tablets'. When I vomited every day for 10 months, I was never sent for tests because it was 'bound to be anxiety'. Medication side-effects are not taken seriously - serious though they may well be.

The result is that disabled people suffer more than we need to. Health is neglected, and further problems result. We may not be straight-forward patients, we may cause the doctor to need to work a bit harder, but that's not an unreasonable expectation, surely. It is their job.

Being listened to, being taken seriously, being treated well, are all things which everyone should be entitled to, and which everyone should receive.

In the news recently was harrowing accounts of neglect of learning disabled people who were supposed to be receiving healthcare:

There was a man, Martin Ryan, who starved to death after not being fed for 26 days while in hospital. Five other people's care was also slammed.

The British Medical Journal states that:

One year after its damning report into the delivery of health care to disabled people, the Disability Rights Commission, the statutory watchdog organisation for people with disabilities in England, Wales, and Scotland, says in a new report that little has changed to bridge the gap in health care.

The Disability Rights Commission report:

An investigation into healthcare given to people with mental health problems and learning disabilities shows they often get worse treatment than others.

The Disability Rights Commission (DRC) - which examined eight million health records - says the government could face legal action unless things change.

The study concentrated on primary care in England and Wales, which will soon fall under new equality laws.

The government says it has already started acting on the report.

The 18-month investigation shows that people with learning disabilities and mental health problems are more likely to have a major illness, to develop a serious health condition younger and to die sooner than the rest of the population.

Such people were less likely to have routine tests and screening to pick up signs of a problem in its early stages.

'Lazy fatalism'

The DRC also found that people with learning disabilities and mental health problems face "real barriers" when accessing services.

"The acid test of a national health service is not whether it works for those who are generally healthy, but whether it benefits those with the greatest risk," said DRC chairman, Bert Massie.

He said that the response from the government and the NHS was "deeply inadequate", a situation which was made worse by "a dangerously complacent attitude and a lazy fatalism" on the part of the medical profession.

"This is completely unacceptable - we need to see a radical change in the commissioning, targeting and delivery of health services in order to close this gap quickly."

The British Medical Association (BMA) has described the findings as "extremely worrying".

"As doctors, we believe it is unacceptable for the healthcare needs of this group of people to be ignored," said Dr Sam Everington, who co-chairs the BMA's equal opportunities committee.

He said the report would be discussed by GPs at the BMA in the near future.

The Department of Health said it would be working with the DRC to develop a full response to the investigation.

Mental health charity Sane said it was "disturbing" that people with mental illnesses were at greatest risk of becoming physically ill through neglect.

The charity's Marjorie Wallace called for a "new drive amongst all health professionals to ensure that each time a person with mental illness receives medical help, they are given a physical health check".

Eight million records

The investigation spoke to senior health professionals, policy makers and disabled people themselves.

Researchers analysed eight million health records in three primary care trusts (PCTs) in England and one local health board in Wales.

The DRC says that in spite of increased needs of these two groups, important checks are provided less often.

For example, people with learning disabilities who have diabetes have fewer measurements of their body mass index, while those who have had a stroke have fewer blood pressure checks.

The investigation identified a problem known as "diagnostic overshadowing" - where symptoms of physical ill health are often seen as part of a patient's mental health problem or learning disability and are not properly investigated or treated.

More than 50% of people who spoke to researchers said they experienced difficulties when trying to see their GP.

They identified the attitude of reception staff, inflexible appointments and inaccessible information as being some of the causes.

A few said they were not registered with a family doctor or had been struck off the list for being too demanding.

The report did identify areas of good practice but the DRC says services are frequently working in isolation and initiatives developed by specialists have not become part of the mainstream.

The government is being urged to put in place a number of improvements to "close the gap".

"We agree with the broad thrust of the DRC's recommendations and have already started to act," said health minister Rosie Winterton.

She said £7m had been made available to almost 90 PCTs to employ "wellbeing nurses" to help mental health patients.

The department has also allocated £42m to PCTs to help them to implement further measures to improve the care of people with learning disabilities.

This is not theoretical, this is actually happening, and I witness or experience it myself, all too often.

If disabled people are to ever have equal access to society, we need equal access to good healthcare.

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Please see also my other Blogging Against Disablism Day post, over on my photography blog, where you can see various empowering disability rights designs I have created.