Intrusive Questions

in·tru·sive/inˈtro͞osiv/Adjective

1. Making an unwelcome manifestation with disruptive or adverse effect.

2. (of a person) Disturbing another by one's uninvited or unwelcome presence.

Intrusive comments from strangers about my breasts began pretty much as soon as they grew. Intrusive 'are you anorexic?' questions happened when I was slim (and yes, some of that time, I was. Did you really want that answer?). Intrusive comments about my weight are different now, but still intrusive and rude.

But lately, the subject of the vast majority of intrusive questions I get asked are related to being disabled.

Practically every time I go out, someone asks me, "So, what've you done then?" and nods to the crutch. This happens disproportionately in the bus queue, oddly. But can happen anywhere - last week by the guy serving me in Subway, and he didn't even stop there.

I am never quite sure how to answer. In my head I come up with clever and funny stories to answer this question, involving shark attacks and being trampled by donkeys, but in reality these rarely come out of my mouth. I sometimes say, "I had an operation on my leg" which, while true, isn't entirely relevant. For what it's worth, regarding that actual question, I haven't done anything.

I could tell the truth of course, but it's a long, complicated and in depth story, and people wouldn't actually want to hear the whole thing. Not that I'd do this, because it's none of their business. If you are a complete stranger, you are not entitled to my medical history.

Some, like the Subway guy, go further. "What was the operation for?" "What does it feel like?"

Then there's the unsolicited advice that so frequently follows: "My mate had something like that and when he stopped eating *insert random food group here* it got better"; "Have you tried *insert unproven alternative treatment here*?"; "You want to be careful using that stick, you don't want to get reliant on it".

Look, I have a consultant on the case, and she knows a lot about this stuff. You don't. Just drop it.

Think about it this way, if you were waiting in your GP's surgery waiting room, and someone asked you what you were seeing the doctor for, you'd feel that that was an inappropriate and overly intrusive question. It's the same - perhaps worse - at a bus stop, or a sandwich shop, or in the park.

Just like telling me I have big boobs (as if I didn't know) is inappropriate, and telling me to eat less is inappropriate, and telling a slim woman to eat more is inappropriate, so asking a complete stranger about their impairment is also inappropriate.

Sometimes young kids ask me questions, and I don't mind that as much. They mainly want to know if it hurts. Then they get on with whatever they were doing before. Actual friends asking me questions is fine, and actual friends offering me advice based on something they've read can be helpful, because they know what I've already tried and what I'm likely to want to try.

But the man at the sandwich shop and the woman at the bus stop and every other stranger who feels entitled to know, it's not fine. My body is mine, in all its weirdnesses and failings and successes. Some of its details are visible to you, but it's still not ok to just tell me what you think because you can see that I have breasts, a big tummy, a limp, scars or a mobility aid.

It's not benefits that are outrageous, it's the cuts.

The Guardian reports on attacks on people who have been on disability benefits for 10 years or more.

Employment Minister Chris Grayling described the figures as "outrageous" and promised action to get people off benefits and back into work.

There is a shocking lack of acknowledgement or awareness that if someone has been on disability benefits for 10 years are probably pretty ill, have significant impairments, or face massive barriers.

"Thousands of people who have simply been cast aside by a welfare system that does nothing but put them in a queue for benefits and then forgets about them.

"Well those days are over. We will no longer accept a system which writes people off at a drop of the hat and expects the taxpayer to foot the bill."

With statements like that, they appear to be trying to cloak their attacks in the guise of concern for the benefit recipients, but it is a thinly disguised threat where the biggest concern is clearly the 'taxpayers footing the bill'.

It shows a complete lack of comprehension of the reality of the day to day lives of those who have been on long-term sickness benefits, and of why people are in this situation. There are many things the government could do to improve disabled people's lives and, yes, their chances of eventually getting back to work, but cutting off benefits helps no-one.

To put the £4.2 billion in context, we also know that £16 billion worth of benefits go unclaimed every year.

(Cross-posted at Where's the Benefit?)

Budget Impact on Disabled Women

Jess posted that women will bear the brunt of three-quarters of extra taxes and benefit cuts from the latest budget. Disabled people are also at risk, especially with the proposed changes to benefits, so disabled women will be particularly adversely affected.

In a 2004 study by the Joseph Rowntree Foundation, on the extra costs of living associated with being disabled, it was found that disabled people living on benefits face a weekly shortfall of £200 compared to the amount required for them to ensure an acceptable, equitable quality of life and minimum standard of living. And those results were for people on maximum benefit levels.

With many people who are too sick to work being 'pushed into seeking work without any help or support', and the continuing rolling out of ESA, a system condemned as 'unfit' by one of the very people who designed it, along with proposed 'savings' (by which we mean cuts) to Disability Living Allowance (DLA), many disabled people living on benefits will be even more limited.

The cost of living for everybody, as well as the particular extra costs of living for disabled people, continues to rise, and will do so especially with the increase in VAT. As benefits are frozen and essentially cut, disabled women in particular will be seriously adversely affected.

For working disabled women, there will also be more problems. The Joseph Rowntree report found that disabled people with high-medium needs would find themselves with a shortfall of £80 a week, not even including possible PA costs. Add to this that more disabled people tend to work in the public sector than the private sector, where cuts are of course being made, and the situation is frightening. In addition, disabled people who work can claim Disability Living Allowance, so cuts and limitations will affect them too. In fact, some working people can only work because of the way they use their DLA to cover additional costs, so cutting that could well mean that some working disabled people would have to stop work, and claim benefits.

The proposed budgetary changes threaten to send many more women into poverty. They threaten to send many more disabled people into poverty. So for disabled women? It is a very scary time indeed.

Signal Boost: Feminism and Mental Health – Call for Submissions

Found via FWD (feminists with disabilities) blog:

Feminism and Mental Health – Call for Submissions – Deadline: June 1, 2010

Call for Submissions:

The lived experience(s) of mental health in feminist communities

Call for submissions from people of any gender who identify with feminism and have lived experiences of a psychiatric diagnosis.

Our upcoming anthology, Feminist’s Navigate Mental Health (working title), will explore the complexities of navigating mental health and how a feminist identity may (or may not) shape those experiences, thoughts and feelings.

Submissions are welcomed in the form of personal short stories.

The submissions received will shape the outcome of the book. The final
manuscript will be submitted to relevant independent publishers.

Possible themes may include (but are not limited to):
o Coping – what works and what doesn’t
o Any positive aspects of your mental health that are commonly considered deficits
o Treatment preferences and past experiences
o Medication
o Personal/lived understandings of your diagnosis (acceptance or rejection)
o Stigma/tension around mental health issues in the feminist community
o Feminism and well-being/strength/empowerment
o Feminism and distress

Guidelines:
o Remember to take care of yourself while writing about topics that may be distressing;
o Good writing skills are great, but not mandatory! We will work with you to edit your piece;
o Submissions should be saved in .doc or .rtf, size 12 font, Arial or Times New Roman, and double spaced;
o 500 to 4000 words
o Include contact information and a brief biography;
o Only email submissions will be accepted;
o Submission deadline is June 1st, 2010.

Who we are
The women behind this project are Jenna MacKay and Alicia Merchant. Jenna is a psychiatric survivor and community activist who is particularly interested in violence and mental health. Alicia is a freelance writer and contributing editor for various magazines and has been published in CR Magazine, thirdspace and the Globe & Mail. Both self-identify as feminist, are interested in critical perspectives of health and live in Toronto. This project is not affiliated with any institution or organization.

Comments, concerns, questions and submissions should be directed to:

fnmhsubmissions@gmail.com

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)

The Election Is A Comin'

I'm not recruiting for votes. I haven't even conclusively decided who I'm voting for. So I thought I'd share some of the tools and sites I've been looking at to help me to decide who will get a cross on my ballot paper, and who will definitely not!

There are quizzes like Who Should You Vote For? online, where you tell them your attitudes to policies, and they tell you at the end which parties your views seem to coincide with the most.

Abortion Rights are doing an election campaign. You can download a factsheet, and lobby your candidates via the site. You just type in your postcode and it lets you email all your local candidates. It then requests that you let them know your candidates' responses to their questions on abortion rights, so that others who enter their postcode can see where everyone stands.

I have only had a response from one candidate (Green, and she answered the way I hoped she would), but hopefully the others will be forthcoming too.

Similarly, the UK Disabled People's Council have put together a list of questions which you may want to question your prospective MPs about.

MyGayVote.co.uk has pie charts showing how the different parties have fared in terms of their past votes on LGBT issues.

Planet Mouret Films is "a blog designed for learning disabled adults and those who are involved in the LD community", with lots of straight forward information about the general election, links to easy-read information about voting, easy-read manifestos and the rights of learning disabled adults to vote.

And Scope are urging "local authorities to act immediately to make sure polling stations are more accessible. They have warned that some people may find it difficult to vote in next month’s elections but said it was not too late for councils to make a difference."

(Cross-posted at The F Word)

More of this stuff

More 'give up your seat for someone who needs it more' links. Proper analysis and posts will follow asap.

People who don't give up their seat to someone in need

Make my day - offer a pregnant lady your Tube seat

When on a bus should a young person give up their seat for an elderly person? If so, how old does the person have to be...you wouldn't want to offend anyone!

NYC packs some punch behind plea to give the disabled your seat

Japanese train poster #1

Japanese train poster #2

Not Everyone "Stands Up for People with Disabilities"

Anthony Barnes: Standing room only (even on crutches)

do people give up their seat on the bus/train?

Give up your seat and make someone's day -- whether they're pregnant or not

Giving up your seat on the bus to someone who needs it more

The Supertram Problem Exists Worldwide.

Following my post yesterday about people not giving up 'priority seats' on Sheffield Supertram for disabled people, I have found some interesting links online.

I was reading Man on Crutches on Train with Camera and, about 2/3 of the way down, some words sounded familiar - I realised they were linking to a comment I made on the subject last April!

That article actually has some really interesting thoughts and information, which I want to look at in more detail when I have the chance. And it is talking about this blog, named People Who Sit In The Disability Seats When I'm Standing On My Crutches, where the creator took photos of those very people. This blog has not been posted on for nearly a year now, sadly. Though I could create my own alternative for Sheffield trams!

Another article I've found is The iPhone Vigilante, about the blog mentioned above. And I also found a discussion board message on the same issue, but in Singapore. This thread is another that I will havfe to read in better detail some other time, but one new idea I got from it is to suggest to Stagecoach that the messages announced through the tram system could include one about giving up your seat for someone who needs it more.

There is a discussion here, a yahoo discussion and a Facebook group, for those of you so inclined!

There will definitely be more happening on this issue, watch this space! (well, this blog at least).

Disabled Access to Stagecoach Supertram in Sheffield

Something has bewildered me for some time. It's that normally, when I'm on a bus in Sheffield, if none of the Priority seats are free, other passengers usually offer me a seat when they see my walking stick or crutches. However, when I take the tram, this virtually never happens. I have no idea why tram passengers don't do this when bus passengers do.

Offering me a seat is immensely helpful. Standing up for any period of time, even short periods, causes me pain. Balancing on a moving vehicle with only one free hand, or no free hands (depending on whether I'm using one or two crutches) is really difficult, when my balance is already bad. And being able to sit down, even for a short journey, helps to delay the inevitable exhaustion, which means I can hopefully get a bit more done, wherever I'm going.

Since I had surgery a month ago, I have needed to sit down more. Standing up causes me much more pain, and even the slightest things tire me out.

So, this morning, I emailed Supertram about this, saying:

Dear Supertram,

I use the buses and trams regularly in Sheffield, and whenever I take a bus, if there are no free seats, I am nearly always offered a seat when someone sees that I am using crutches or a walking stick. However, when I take the tram, I am virtually never offered a seat.

I do not know why this is the case, but people on buses seem to have a lot more respect for the 'Please give up this seat if a disabled person needs it' type signs than they do on trams.

It makes my tram journeys very difficult and painful, and is putting me off using them at all.

I was wondering if there is anything you feel you could do to help with this situation. I am obviously aware that there are people with invisible disabilities who would have every right to keep their seat, but that cannot be the case for everybody who stays in the 'disabled priority' seats when there are disabled people clearly struggling with standing.

The first things that come to my mind in terms of what you can do, are awareness raising campaigns on the trams themselves, and more proactive action from the conductors in this area.

I would appreciate your thoughts on the situation,

The response I received was, frankly, awful. They are taking no responsibility for their role and show no acknowledgement at all of my concerns.

They say:

I was concerned to hear that you find it difficult to use the priority seating if another passenger is already there. In the first instance I would suggest that you politely asked the passenger if they would leave the seat to enable you to use it . I agree with your point that some passengers may have an invisable inpairement [sic] but the seats are clearly marked and there should be no problem in the majority of cases. Experience has shown that not all passengers who warrant the use of the priority seats wish to do so and although I would expect conductors to assist when requested they will not always do so automatically. I will pass on your comments re awareness training but feel that the best way to "educate" able bodied passengers to give up the seats is if they are asked to do so by other passengers.

It's a cop-out. I feel, more strongly than ever, that they need to look at the 'Priority seats for disabled people' signs and see that whatever they currently have up is not doing the job, as people are paying no attention. There are only a few available seats which don't involve going up steps, so these need to be seriously prioritised. In addition, training the ticket inspectors in assisting disabled passengers to find a seat could be an effective way of combating the problems.

Interestingly, I was sent the link to this government consultation on Improving Bus Passenger Services today, and learned that:

7.9 We are seeking views on further ways to ensure stricter enforcement of the duties of drivers, inspectors and conductors with regard to disabled people. Conduct Regulations set out the duties of drivers/ conductors of regulated public service vehicles with respect to passengers in wheelchairs and other disabled persons. DfT’s guidance specifies that passengers who are not disabled but are occupying the wheelchair space could be asked to move to allow a passenger in a wheelchair to board, provided that there is room for the passenger to move elsewhere on the bus and the seating and standing capacity will not be exceeded. Drivers are also required to take reasonable steps to ensure the safety of their passengers.

7.10 The Public Service Vehicles Accessibility Regulations stipulate that there should be clear signage for the priority seat and the wheelchair space on the bus. The Department is committed to delivering transport that works for everyone. We have therefore been considering how enforcement of these regulations can be improved. Stricter compliance with the Conduct Regulations would go a long way in ensuring that the wheelchair space is available for a passenger in a wheelchair.

7.11 We therefore seek views on measures to ensure stricter compliance with the regulations in general, particularly on whether introduction of financial sanctions against operators who persistently breach any aspect of the regulations, would be useful.

Now, while this regulation is regarding buses, the trams in Sheffield provide a very similar service, and should take account of the current regulation and proposed changes. My safety is certainly compromised when I have to stand on their vehicles.

I don't know what steps to take next. I was hoping that a response from Stagecoach would be helpful and open to looking at improvements. However, their huge failure to take what I have requested into account has really disappointed me.

We Are Women Too

This video is of Eleanor Lisney and Michelle Daley, talking at Million Women Rise at the weekend, about disabled women's lives. About the reality of domestic violence committed against disabled women, including individual women's accounts, and about Fiona Pilkington who killed herself and her disabled daughter after being unable to get help against the abuse and intimidation they were suffering. About refuge provision - scarce at the best of times, and accessible provision being almost non-existent. About the particular vulnerability of disabled women when it comes to sexual assault and brutality in care homes or by carers, and the difficulties in reporting and being heard, as well as barriers to accessing services. And about multiple identities, and how disabled women can experience multiple discrimination from within the disability movement, other women, the community and society.

"It is about raising the voices of our disabled sisters. It is also about ensuring our recognition within this struggle for human rights. [...] We all have a responsibility to ensure that disabled women are recognised, and respected, as equals within this struggle, and all our voices to be heard. We are women too."

[Edited to add - There are transcripts of these speeches here, thank you so much to Eleanor, one of the speakers, for letting us know, and to Felix Gonzalez for making the videos and doing the transcription. More transcripts of speeches of the day will be published at http://connectculture.wordpress.com/ in due course.]

Let Go!

I've been told about the phenomenon by various disabled people, but had never experienced it myself until today. The phenomenon of a complete stranger grabbing hold of you without warning, to 'help'.

Today was the first time I left the house since the snow started. It was a very scary prospect, helped a lot by yaktrax. My walking can be pretty dodgy at the best of times, but amidst ice and snow I just haven't been able to risk it. But by today I was tearing my hair out. I needed to see something other than my 4 walls. So, yaktrax and woolly hat on, I ventured out.

It was pretty precarious. The city centre pavements were worse than I'd anticipated, but I did most of what I had to do, then waited for my bus home.

It was when the bus arrived that the presumably well-meaning man grabbed me. From behind. By the shoulders. The jumping-out-of-my-skin which resulted was far more likely to make me lose my balance than any amount of ice, and his holding onto my shoulders was hardly going to help with that.

It was only when he said, "Here, let me help you on the bus" that I knew I wasn't being mugged.

I know, I know, he was only trying to help. But seriously, grabbing a woman from behind is not a good thing to do. It's inappropriate and way too invasive to personal space. And when that woman has a walking stick, which is perhaps why you're grabbing her, you're probably more likely to cause injury than to prevent it.

If you really want to help, just ask. I would have actually appreciated being able to hold onto Mr Grabby's arm to help me on the bus, had he asked if I needed any help. Don't presume, don't grab, don't force a blind person across the road or a wheelchair user down a kerb. If you ask, and they need help, they'll tell you what you can do. And you won't frighten or injure them that way.

God Wants to Cure Me

Yesterday a man approached me at a farmers' market, and said, "I can't help but notice you use a walking stick". This exact phrase is regularly used by people who want my address to send me mobility aid catalogues in the post.

However, he then went on to say, "And God wants you to walk home without your stick. I have seen healings here today, and wonder if you would let me pray for you so that he can heal you."

I was amused at the time, refused his offer and walked on. However it wasn't long until I was actually furious.

Firstly, how dare he make all sorts of presumptions on the basis of my using a walking stick? Actually, my stick is a good thing. It helps me to get around without falling over, which is always a bonus. Sure, it's a hassle sometimes and it's wrecking my wrist, but his outlook assumed that mobility aid = awful, must be fixed. When my outlook is mobility aid = great, helps me go places.

And secondly, I don't think that your God does want me to walk without a stick. If he did, he's had a good few years now to sort that out, and hasn't. If he was that bothered, he'd have done it by now, and frankly wouldn't need you praying to him to get around to it.

So please, don't make presumptions about my rather gorgeous purple walking stick, whether I should want to get rid of it or not, and whether I want you to get inside my head by promising something you can't possibly achieve, by means of superstitious nonsense.

Disabled Feminism

My third guest post over at the F Word.

I was very anxious before writing my first post here, but when the comments starting rolling in, I was overwhelmed by the positive messages in response to it.

Firstly, it really helped me. The encouragement that I am doing ok, I am doing good things, and I am making a difference, even if I can't necessarily do the 'outside' things.

And secondly, that it touched so many people. Not especially that my words helped, but that talking about disability and feminism seems such a rarity, and that many people were reading about it for the first time. I'm so glad I could do that, and I'm so glad that it provoked thought for some and reassurance for others, but we need much more!

I mentioned on my main blog that I had posted here, and one of the commenters there said,

Isn't it a shame that writing about disability and feminism and inclusivity is something that is still a remarkable thing?

And she's right! Feminism and activism really needs to catch up, and really address this.

I appreciate that some groups have limited resources, or not much choice of venue, but seriously, if you are a feminist group and you are not meeting in an accessible place, what are you thinking? Would you meet somewhere that excluded other groups of women? Some kind of white-only venue?

You wouldn't, because, even if the founding members of the group were all white, you would know instantly and instinctively that this went against every human and feminist value you have ever held. You would not want to associate yourself with a venue like that, nor would you want to support that venue in any way. If you did meet there, that would give out a message to black women that they were not welcome, so they would not enquire about the group, which might give you the impression that black women did not want to join the group, so it was ok, for the moment, to meet there. This might eventually give you the false impression that actually, meeting in a white-only venue wasn't so bad, black feminists weren't trying to join so it was less of an issue than you had predicted, and after all, the room hire is free.

You know, reading that, that it's wrong! And meeting in an inaccessible venue is the same. Even if no disabled feminists have enquired about the group, this may be because they know they can't use that venue. Or maybe they even turned up, waited outside for a while when they couldn't get in, then went back home. What if one of your regular members becomes disabled? Will they be no longer welcome?

However, overall there was a really positive message from the commenters to my original post, which is that online activism is relevant, is important, and does make a difference. Raising awareness, taking action and sharing stories and experiences can all be done extremely successfully online, and even more effectively than in real life at times. This is a good reminder to me, and to all the women who responded who also have limited spoons, whose uses have to be carefully chosen.

Kitt, in the comments, said

I know disabled feminists have a lot to offer - we have been forced to plumb the depths of our ingenuity to do the things we want to, using as few spoons as possible, and to choose our battles because we simply have to prioritise everything, everyday. Feminism has always benefited from the ingenuity of women - letting disabled people in will only add to this. We are another voice in the choir that will make the song sweeter and stronger.

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.

---

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.