Let Us In! Blogging Against Disablism Day 2011 #badd2011

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

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

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

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

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

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

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

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

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

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

There are some recommendations I would make, however.

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

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

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

Blogging Against Disablism Day: What Is Disablism?

What is disablism?

Disablism is arranging a meeting in an inaccessible venue.

Disablism is sitting in the 'priority' seats on public transport and not offering those seats to a disabled person, if you are not disabled yourself.

Disablism is when a doctor ignores physical health problems because you have mental health problems.

Disablism is parking in a disability car parking space when you are not disabled (even if it is *just for a minute*).

Disablism is using words like retard, psycho, spastic, handicapped and lame.

Disablism is thinking that making buildings accessible is 'bending over backwards' and political correctness gone mad.

Disablism is presuming that disabled people are less than you.

Disablism is not hiring a disabled person because of assumptions you have about their abilities or needs.

Disablism is staring at someone because they look different.

Disablism is making assumptions about what someone can and cannot do.

Disablism is making offensive jokes about a group of people on the basis of their impairment.

Disablism is presuming that disabled people's lives must be awful.

Disablism is casting a non-disabled person to play a disabled person in a play or TV show.

Disablism is disability hate crime.

Disablism is refusing to prescribe contraception to a learning disabled person because they can't possibly want to have sex.

Disablism is not acknowledging that many disabled people experience discrimination on multiple levels.

Disablism is frequently institutionalised.

Disablism is assumptions.

Disablism is not asking whether your event needs a sign language interpreter.

Disablism is going ahead and doing what you think might help, rather than asking someone what would help.

Disablism is refusing to prosecute men who rape mentally ill or learning disabled women, because the women are 'unreliable witnesses'.

Disablism is thinking that you don't need to consider access needs, because disabled people don't come to your events (and not wondering why they don't).

Disablism is assuming that someone you haven't met (or even that you have) is not disabled.

Disablism is presuming that people diagnosed with schizophrenia are dangerous and violent.

Disablism is thinking it is less tragic when a disabled person kills themselves than it is when a non-disabled person does.

Disablism is presumptions about 'quality of life'.

Disablism is behind all these news stories.

Disablism is sacking somebody when they become ill or disabled.

Disablism is not in the dictionary.

Disablism is telling us we are being punished for something we did in a past life.

Disablism is thinking that if someone doesn't look disabled, then they are not.

Disablism is ignoring somebody because you don't understand.

Disablism is thinking that disabled people 'have it too easy these days' and are therefore being overly demanding if they want to be able to get into a building.

(cross-posted at the f word)

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.

BADD

Blogging Against Disablism Day is coming up. Watch this space on May 1st.

Blog Against Disablism Day 2007.

This post is mainly a republishing of an earlier post, to mark Blogging Against Disablism Day. Unfortunately, things haven't changed since February 2006 when I posted it originally, and some areas seem to be getting worse.

I wish this post could be celebrating the reduction in disablism when it comes to mental health treatment, stigma and support, but with the Incapacity Benefit fiasco, and mental health care services being slashed (no pun intended, maybe) this government's so called 'priority' of mental health care is clearly either a huge lie, or they have really fuckin weird ways of prioritising things.

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Self-Harm and Medical Treatment
The National Institute for Clinical Excellence (NICE), in 2004 issued some guidelines on

The short-term physical and psychological management and secondary prevention of self-harm in primary and secondary care


These include instructions such as,

People who have self-harmed should be treated with the
same care, respect and privacy as any patient. In addition,
healthcare professionals should take full account of the
likely distress associated with self-harm.
[...]
•
If a person who has self-harmed has to wait for treatment,
he or she should be offered an environment that is safe,
supportive and minimises any distress. For many patients,
this may be a separate, quiet room with supervision and
regular contact with a named member of staff to ensure
safety.
[...]
•
Always treat people with care and respect.
[...]
•
Take full account of the likely distress associated with
self-harm.
•
Offer the choice of male or female staff for assessment and
treatment. If it is not possible to give people a choice, explain
why and write it in their notes.
•
Always ask the service user to explain in their own words why
they have self-harmed. Remember, when people
self-harm often, the reason for each act may be different on
each occasion; don’t assume it’s done for the same reasons.
•
Involve the service user in clinical decision-making and provide
information about treatment options.
[...]
•
Always offer necessary physical treatments even if the person
doesn’t want psychosocial or psychiatric assessment.
•
Always use proper anaesthesia and/or analgesia if treatment
for self-injury is painful.
•
Offer sedation if treatment may evoke distressing memories
of previous sexual abuse, such as when repairing harm to the
genital area.
[...]
• Don’t delay treatment because it is self-inflicted.


There is an awful lot of info in the report, but some of the pertinent points I have listed above.

I have heard endless stories of people in A&E being refused stitches to a self-injury cut, on the basis that 'You've got so many scars already, one more won't make a difference', or 'There's no point - you'll only do it again'. Similarly with people who have been refused anaesthetic before being stitched or having other painful treatments.

These situations appall me. People who have caused their own injuries deserve just as good (physical and psychological) care as those whose injuries were accidental or caused by others. People do not self-harm for no reason - it almost always occurs within a context of intense distress and desperation, and can frequently prevent the person from further harm (for example, suicide attempts) by releasing some of the pressure before it boils over.

People who need treatment for self-harm injuries are likely to be feeling dreadful, full of their own inner guilt for needing treatment, and very possibly feeling quite vulnerable. They do not need doctors or nurses or ambulance staff to reinforce their own feelings of self-hatred or to imply that they are wasting people's time.

I cannot talk for everyone who self-harms, and I also do not want to downplay the incredible sensitive and appropriate treatment offered by many medical staff. There are people who self-harm who won't relate at all to what I say, and there are doctors, nurses and ambulance staff who do brilliant work. There's no doubt about that.

However some people are treated appallingly, and this only leads to the person who has self-harmed to feel even worse about themselves, and further self-harm feels more appealing because they have had all their worst fears and feelings confirmed.

So, where am I going with this?

Well, there are cases of blatantly bad treatment (being refused stitches when they are needed, not using local anaesthetic where it normally would be used, derogatory comments by staff etc.), and these are easy to criticise. But there are also many, many occasions when someone who has self-harmed gets bad-mediocre treatment, but it is hard to know what the motivation behind the not-really-caring is.

I needed treatment the last couple of weeks for a burn. I went to a GP, who asked the Practice Nurse to dress it. The nurse's treatment was, well, lukewarm to say the least. She dressed the burn very badly - using inadequate dressings and suggested no follow-up at all. I needed to go back 2 days later because of the state of the dressing and the injury and although she dressed the injury better than the first time, it was still very careless, unnecessarily painful and there was no plan for follow-up again.

I came out of both of these encounters very upset, especially the second one. I was spinning between 'I deserve better treatment than this' and 'Why on earth should I expect decent treatment? It's my own stupid fault anyway'. On top of that, I really didn't know whether the nurse didn't treat me well because my injury was self-inflicted, or whether she was actually just quite incompetent and not very interested in general.

I still don't know the answer to that, but the following week I saw a different nurse at the practice, who dealt with my injury competently, and was actually nice to me. It made a huge difference to how I felt when I left the surgery. I didn't feel full of self-hatred, full of self-loathing, full of self-directed anger.

I have that age-old double standard. I believe, without a doubt, that people who have self-harmed deserve and require treatment which is as good as people who have injuries which were accidental or caused by someone else. However, when it's *me*, I of course don't deserve a single nice word or a dressing which actually deals adequately with the wound. I am stupid and a waste of time, though noone else is!

I really don't know if I got sub-standard treatment because the nurse wasn't up to speed on burn dressings, or on 'bedside' manner, or whether it was because she didn't want to deal with a self-inflicted injury, or didn't think it deserved time and treatment, or indeed deal with someone who could self-injure.

All I know is that I came out of the appointment with the second nurse feeling much more positive and capable and listened to. I'm no expert on dressings, but even I knew that the first two were inadequate. I came out of those appointments feeling disgusting and loathsome.

I do believe that in terms of avoiding future self-harm, feeling positive and capable and listened to is certainly a better place to start!

---

Some other relevant past posts:
Blogging Against Disablism 2006
Who Are The Mad Ones?
Information Release: Sheffield Welfare Action Network
The Difference Between Self-Harm and Suicide
Self Injury Awareness Day
Amitryptyline
National Inquiry into Self-Harm Report
Trial and Error
Time For More Health Awareness
Psycho Babble or Psychic Healing?
Alcohol, Coke and Oil
Volunteering Lunch Expenses Campaign
Lunatic Enters Number 10
Things You Need To See
I'm Not Ok
Bastard
Quietness
and plenty more!