Friday, 28 February 2014

Coming out for LB :)

I never discuss my impairments. one, I don't like too and two it is against the social model of disability which I really agree with that it is society that disables us more than our impairments (how much more depends on how much you agree with the social model.

But then, something happens, and it all changes.

I read this. 

http://www.dailymail.co.uk/news/article-2564731/Mother-tells-battered-bathroom-door-stop-daughter-12-suffered-seizures-drowning-bath-late.html

at the same time as reading about laughing boy and how his death was preventable if someone was watching over him in the bath. He had epilepsy and died in the "care" of the NHS. For more see here: http://mydaftlife.wordpress.com/the-report/

I sit here, feeling it. On a very personal level. and I can't be silent anymore.

I have non epileptic seizures. I have had these since I was around 15 years old. They are stress related and their severity and frequency fluctuate. It is the reason I get my DLA and my bus pass. I need 24 hour supervision and care, as these are unpredictable and can sometimes be nasty. (I don't often get this supervision and care but thats by the by).

I guess you could say I am lucky. I have only come close to injuring myself a few times and didn't quite break my hand at one point. But it still affects me, personally when I read about these things. There has to be an answer, surely?

There are many things I can't do safely because of my impairment. I don't let it disable me though because I find ways to work around it. It just makes me think that there has to be a safer way to have a bath for people like me, for people who its not really that safe.

In my old place I had a shower cubicle fitted. It meant that I could safely get clean (as in if i wasn't well enough to stand up then I couldn't shower). Here, I don't. So, usually I don't bath without supervision. It is safer.

But then, surely in todays world there should be a solution to this? A way to safely bath with privacy, dignity and safety in tact? I don't if we should look to the techy world or somewhere else but I know there has to be a solution to this somewhere.

I know we can't go back in time, but for the future, surely there has to be a better way?

(and if someone could invent me a car I can drive that'd be great)

Wednesday, 26 February 2014

some thoughts on the LB report

Please look at this twitter profile if you don't know of the hashtag #justiceforLB . https://twitter.com/JusticeforLB

It was in the news (local bbc news) yesterday that LB's death was preventable. http://www.bbc.co.uk/news/uk-england-oxfordshire-26334445 .
I haven't been able to stop thinking about this news since then. It has been going round and round in my head about so many different things related to this that I haven't made any comment and kept in the shadows. But then I think I have found what I want to say, and it was @bendygirls tweet this morning that reminded me and summed up what I wanted to say.

 <blockquote class="twitter-tweet" lang="en"><p>Good to see media coverage starting <a href="https://twitter.com/search?q=%23JusticeForLB&amp;src=hash">#JusticeForLB</a> but as ever, no-one with a learning disability has been asked to comment</p>&mdash; BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/438612418944851969">February 26, 2014</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>

I have to be honest. I haven't read the report. I don't honestly think I could. I doubt many people with a label of learning difficulty/disability could either. It reminded me of the spartacus report, which for those who don't know was put into an easy read format by a charity. I think thats where I started reading it. I can't take in a lot of information, and certainly not a lot of technical speak. From what I have seen of the report on blogs it seems to be that the report into LB's death is far from user friendly.

I am not saying that it should be made into an easy read format (although the principal would be nice). I am commenting that there is a phrase resonating through bendygirls tweet and the report.

"nothing about us without us".

This phrase first started being used by the disability rights movement in the 1970s. Disabled people were fed up of their lives being dominated by the medical professionals and other organisations. It is an empowering statement, one that is still around today. Going back to the report "they" are discussing LB in an abstract sense. It is written by professionals for professionals. It is not written for the average person in the street to understand. Whilst I understand reports like this have a place I feel it is important to reclaim the humanity of LB after this report is published. He wasn't "a patient" or "a label" but a human being.

It frustrates me that reports exist that are inaccessible and unwieldy. I don't know what the answer is, but I know that if anyone is to actually learn anything and do anything about LB's death they need to include everyone affected in an equal and accessible way.

Going back to @bendygirls tweet, they wont ask anyone with a learning disability to comment because I doubt they could find anyone who would be able to read the report or have been allowed to participate on an equal level.

Edit and updated: YaY an easy read version.  http://peoplefirstengland.blogspot.co.uk/2014/02/connor-sparrowhawk-report-easy-read.html?spref=tw

Also look here for other coverage on this:  http://mydaftlife.wordpress.com/the-report/

Monday, 17 February 2014

representing invisible disability visually.

For a long time i have been very frustrated. the traditional symbol for disabled people doesn't include me. As it is a person sitting in a wheelchair it seems to suggest that you can only be properly disabled if you use a wheelchair. Its adoption and popularity in society perpetuates the myth and does further damage to us who are invisibly disabled. As a visual artist, the question of how can i visually represent something that is invisible? Got to me. Alot. 

When something like this gets to me i have to do something about it. The shadowing of the wheelchair symbol against the man/woman was a slow but sudden process of serendipty and luck. I had been playing with shadows on photoshop and then it struck me.


I make no apology for the design, and as i didnt take any credit for it i love seeing it pop up in random and unexpected places.


However, when i seen this blog critising it i felt i had to respond as either the original or one of the designers of this image. http://thebodyisnotanapology.tumblr.com/post/76733350346/the-problem-with-person-first-language-whats-wrong


The idea of the shadow is that for people who have an invisible impairment it is hidden away, but still real and still has a disabling impact (in different ways) to the person. It is a reaction to the normal/abnormal and abled/disabled binaries that exist in our society. I have fought long and hard to be recognised as a disabled person, because to the world i look "normal". 


It also ironically, seems to play into the gender binary of society. However, this is actually a clever reaction to societies definition. My initial reasoning for using the male female toilet symbol is a simple one. It is toilets. Disability is often portrayed as the third gender of the toilet world, with male, female and disabled being the options. You can't be more than one, you have to chose. The male/female symbol is as instantly recognisable as the disabled person symbol. Its why i picked it. It is a sad reflection of our society that these exist, but i decided to keep it simple and easily recognisable. It made a statement about gender, but one that is that gender considerations are so often omitted from disability (perhaps a skirt would get caught in the wheels?) and not intended to exclude differently gendered people from the equation. In fact it was trying to include more genders than the wheelchair symbol which in itself is pretty genderless.


I didn't want to make too many statements with the design. I wanted to keep it simple. If i were to design something around intersectionality i wouldnt just include gender, but race, religion and other aspects of a persons identity that can intersect with disability (answers on a postcard as to how i can do that). 


It has been sucessful, because as i said i see it used everywhere. I don't have any control over its usage because i wanted to give it freedom to become whatever it was needed to be. I kept quiet about creating it because i dont think it should be owned, apart from by the person who uses it and interprets its meaning in their own way to help them explain their identity.
I can see how it can be interpreted as an attack on different genders though and i apolgise, it was merely meant as an attack on the symbolism of disability.


From a disabled person.

Sunday, 9 February 2014

Disabled peoples bus passes (in south yorkshire)

In south yorkshire disabled people could use their bus passes before 9:30am and on local trains and trams. We also have a with carer option for those on higher rate care DLA.

However, in a sneaky, we did a consultation its not our fault only 18 people responded type of way, this is all due to end in April. Well, kindly they have kept our with carer passes and we can use the trams too.

Older people will also be losing their train privileges and also could previously travel after 9am.

I hope I don't need to highlight the issues surrounding this. Disabled people will lose their ability to get to work, education, hospital and doctors appointments as well as leisure activities (we are allowed a life). For disabled workers (there are some) who regularly use the bus before 9am (or the train) it renders their passes useless as they would have to buy a weeks pass because of the relative costs. For those disabled people who cant use the bus but can only use the train (and in south yorkshire this could be because of the relative availability of each service, there are some areas where there are only regular trains not buses) it cuts them off completely.

Now the argument might be, well why can't we just pay up and shut up? Which would be all very well if you took the whole point of the bus pass away. The recognition that public transport is our only option, and it is our "car". We don't have a choice but to use it. It disables us by forcing us to pay. Obviously this increases for those of us with carer passes because we have to pay twice.

I am thinking about the people who I know who have spent months learning routes and becoming independent enough to travel by public transport to get to their day centre and will now have to re learn how to do this by paying in cash, if they can even handle money. If they can't, or they can't afford the extra cost then they will become isolated.

However, I wasn't happy with arguing it on cost grounds alone. So I did my research.
According to our local transports business plan the extra costs involved (and these include young people concessionary rates) is 2.66 millon pounds.  (p23)
http://www.sypte.co.uk/uploadedFiles/Corporate/Plans_and_Strategies/5681_Business%20Plan_2013_DC_06.pdf

So, I wonder if there is a way to find out how many people have a bus pass in south yorkshire. These were my findings. According to the .gov website https://www.gov.uk/government/statistical-data-sets/buses-statistical-tables-index#bus-tables-index there were 228,977 older persons passes issued in the SYpte area. There were  33,385 disabled peoples passes issued. 33,638,769 journeys were made on these passes which averages to 128 journeys per pass per year.

There is only one authority (torbay) who offer the statutory minimum concession, and 63 LAs offer travel before 9:30am (out of 89).

If this 2.66 million pounds extra is divided up amongst disabled AND older peoples passes that is £9.90 a year. Thats of course not taking into account the child fare concessions included in this figure.

I was going to be personally writing to the local authority informing them that for an extra ten pounds a year I would like the option to travel before 9:30am. In the form of a bus pass or similar. I'd even be happy to pay 15 pounds for the year for the extra admin.

However, thats just not going to be good enough. I am going to start by writing a letter to as many local organisations who this change will affect (and have people in them who will be affected by them) with these statistics. I will be urging them to write to the transport authority alongside me. I'l even include a template letter to help.

The reason I am writing this blog is twofold. Firstly, if you are reading this from south yorkshire I ask to you join in and get writing to the transport authority with me. I'l have written the letter and template reply by the end of the week and will blog it, please message me if you want it (twitter @allbigideas or leave a comment here with an email address as I have to approve all comments before being visible so I'l read and delete). Secondly I want to urge to you to do the same in your areas, to work out costs and usage and to highlight how much extra per person before 9am travel would cost. I am sure the figure might surprise you.

Certainly in south yorkshire we have nothing to lose by trying.

(in detailed research links)


Table BUS0841
Table BUS0105
Table BUS0823

Older and disabled concessionary bus journeys by Travel Concession Authority: England, annual from 2010/11 (MS Excel Spreadsheet, 90.5KB)
Table BUS0822

Older and disabled concessionary travel passes by Travel Concession Authority: England, annual from 2010/11 (MS Excel Spreadsheet, 99.5KB)



Friday, 24 January 2014

Disability now comes with a weight limit.

Richard Littlejob of the mail (DONT READ IT) has written a lovely piece on how people are being given blue badges for simply being obese.

Aside from the obvious concern that this will increase attacks on disabled people who are bigger than whatever average is nowadays I didn't think there was a weight limit on disability.

Disabled people, surprise surprise come in all shapes, sizes, ages, colours and religions etc etc. It doesn't discriminate on any grounds (unfortunately).

I am wondering if Richard littlejob and presumably all the people agreeing with him think that all disabled people should be slender young blondes in their wheelchairs? Because I was under the impression that they also thought that disabled people had to be over a certain age, as well as having certain things different about them.

It's tough enough being a disabled person, do we all now need to enroll in a slimming programme (presumably this will be paid by the government?) and perhaps they could chuck in a few beauty treatments every so often? How about letting us in on the secret of how people who are physically restricted can possibly exercise every day?

I'm not saying we are all fat, ugly slobs. But I am also not saying that we should all be body perfect (thats a novel concept, disabled people being body perfect :).

Disability doesn't equal a certain body weight. full stop.

(o go on, have a read, and a laugh too.. copied here for your amusement and for the benefit of the dms stats.. NOT)
Richard Littlejohn.
Two stories stood out for me this week. Both are damning indictments of modern Britain and proof positive of the idiocy of the soft-headed, socialist imbeciles who run so much of what passes for our ‘world class public services’.
The first comes from Walsall, where obese motorists are being issued with disabled parking badges so they don’t have to waddle too far from their cars to the nearest kebab shop.
The second hails from York, where people arrested for being drunk and disorderly are being sent on courses to boost their ‘self-esteem’.
  
Let’s start in the West Midlands. What possessed Walsall Council to hand out ‘blue badges’ to gutbuckets? OK, so there is a minuscule number of people suffering from rare medical and genetic conditions which make it difficult to control their weight. Some of them belong in mental hospitals.
But most of those categorised as ‘obese’ are not genuinely disabled. Nor are they ‘victims’ by any stretch of the imagination. They are just fat and greedy and won’t stop stuffing their faces.
Already, the NHS spends a fortune treating patients suffering from a variety of ailments caused by self-inflicted gluttony. Diabetes and heart trouble brought on by pigging out on fast-food is said to have reached epidemic proportions.

Oh dear, how sad, never mind. Stop eating so much and start taking exercise every day, you hideous hippos. Obesity isn’t like a flu epidemic. You can’t catch obesity. It isn’t inflicted on people by dark forces beyond their control.
These selfish individuals are grotesquely overweight because they lack willpower and moral fibre.
They have the option to diet or die, but they do not deserve special  treatment funded by taxpayers.
No one should have an automatic right to an expensive gastric band provided by a hard-pressed public health service, already struggling to provide life-saving drugs to patients  suffering from real illnesses.
It is estimated that up to two million people could qualify for bariatric surgery and that by 2050 half of us will be officially ‘obese’.

By then, Britain’s population will be over 70 million. At this rate there won’t be enough gastric bands to go round and the whole country will be one giant disabled car park.
You can bet, however, that where Walsall leads, other councils will follow in the name of ‘compassion’ and being ‘non-judgmental’. They’ll be handing out blue badges by the tens of thousands to anyone who can prove they have ‘mobility issues’.
The reason these XXXXL monsters have ‘mobility issues’, though, is not because they were born with chronic disabilities, or have lost limbs in an accident or while serving their country on the battlefield.

No, their ‘mobility issues’ are caused by a revolting, self-inflicted excess of flab which their podgy little legs will no longer support over a distance of more than a few yards.
In Nottingham, they are already reinforcing the pavements to cope with the increasing bulk of the legions of Teletubby lookalikes squelching their way to the chippie, via the pub or off-licence.



Thursday, 16 January 2014

A system based on need not labels?

I don't want to be sitting here writing this. I don't want to have to be in this position and to acknowledge that I even am. But if I don't write about it then I will just keep it bottled up inside and it wont help anyone, least of all me.

As some may know I am pregnant. Currently 23 weeks pregnant to be exact. I am also what most people in society would call "disabled". It is for this label and this label alone I have been subject to the scrutiny and judgement of both the health and social services. My husband and I have already been judged as having some "concerns" over our ability to parent, despite this being our first child and despite these concerns being based on assumptions about my disability, impairment and their impact on our day to day life.

I am not going to justify my parenting skills here, as I have none. I am a new Mum who innocently and naively went to her midwife seeking support. Unfortunately what I got in return was a social services assessment and my condition being called "bizarre".

I had an initial midwife assessment done at 18 weeks pregnant. She has little or no training in mental health or disability and was very much focused on the medicalisation of my impairment so the resulting assessment is skewed and focuses on what I can't do rather that what I can. It isolates my impairment from the impact that society has on it and doesn't actually focus on the things that I might need help with.

The assessment was done in a rush, after 3 missed appointments. It was done, despite me stating that we were just about to move. So such statements as the flat was a mess is pretty obviously a falsehood. The fact that the information on the form wasn't quite accurate and full of assumptions and generalisations isn't a surprise. Has anyone ever moved? at 18 weeks pregnant? Its not the best time in the world to be discussing difficult and detailed things.  Not only that the midwife added her "concerns" after we had signed it in a different pen, and we didn't actually consent for the information to be shared.

My impairment might be different, unique, etc. but it is not bizarre. It does not render me incapable of being a mother. My symptoms are well managed and I am well supported in doing this. What I could need help with is managing my symptoms in combination with a new baby and day to day life. What I am getting is being judged, scrutinized and unfairly penalised because I innocently went to them to ask for help.

My concern is that the current system we have is entirely voluntary (something that the midwife and social services seem to have forgotten in my case, I went to them, they didn't have a referral etc.). I had to ask for the help and I had to declare my disability to the midwife. By its very nature, me doing this means that I am not going to be putting baby "at risk". If I were, then why would I have asked for help? I am being proactive and being punished for it. If you were an expectant mum who didn't see themselves in need of help it is very easy to avoid the help, as it would be if you didnt want the help for any other reason (genuine or not). The problem is that at the moment the system is set up to think that "normal" mums to be are going to be perfect and able to cope with a new baby and only those with certain labels (disabled, age, social status etc) are somehow going to be defective. The system needs to recognise that ALL new mums are going to be in need of some support, and that we are all going to struggle, make mistakes and generally make it up as we go along. The system needs to be based on needs rather than triggers based on certain labels.

I have to look at this systemically, because if I didn't then I would take it personally and not be able to cope with it. If it is a system that I need to prove my status as a perfect mum to it somehow makes it easier.

This is the end of this blog post, but I am sure it wont be the end of this saga. I am sure there will be more blogposts to follow.

Thursday, 12 December 2013

One in four claiming sickness benefit are fit to work (dailymail article)

Daily mail without the daily mail. all links back removed..

 

One in four claiming sickness benefit are fit to work: About 227,000 well enough to come off handouts after having new medical examinations

  • A further 346,500 were found likely to be fit for work at some point
  • Those found fit for work now will go on to Jobseekers’ Allowance
  • They will have to show they are looking for employment to stay on benefits
  • Britain spending more than £13billion on sickness and incapacity benefits
By Gerri Peev

More than one in four incapacity benefit claimants have been found ‘fit for work’ following new medical examinations.
Of the 841,000 who have been re-tested, about 227,000 were well enough to come off the benefit, said the Department for Work and Pensions.
A further 346,500 were found likely to be fit for work at some point and have been placed in an interim, ‘work-related activity’, group. They will be re-tested more often and get support or training to move into employment.


Drain on the state: More than one in four incapacity benefit claimants have been found 'fit for work' following new medical examinations
The figures were seen yesterday as an indictment of how previous governments let the unemployed languish on sickness benefits without regular health checks to see whether they had recovered.
Those found fit for work will now go on to Jobseekers’ Allowance, which means they will have to show they are looking for employment to stay on the benefit.



Ministers are anxious to get the burgeoning welfare bill down, but disability rights campaigners have pointed to the high number of successful appeals against DWP decisions as evidence that the system is unfair.
Mike Penning, the minister for disabled people, said: ‘We spend more than £13billion on sickness and incapacity benefits for almost 2.5million people of working age and  we need to make sure that support goes to those who need it most.
‘It’s right that we look at whether people can do some kind of work with the right support – rather than just writing them off on long-term sickness benefits, as has happened in the past.’




Separately, among those on the new Employment and Support Allowance benefit  – for people who have a limited capability for work because of a health condition or disability – 42 per cent were found to be fit for employment.
This meant they were no longer eligible to claim, leaving just 58 per cent still entitled to the benefit.
To continue claiming the ESA, most people had to be reassessed by independent health professionals, under  a programme that started in 2010. 
Those with terminal illnesses, severe disabilities or undergoing chemotherapy were spared from having  to be re-assessed, but the tests – called the Work Capability Assessment – have proved controversial.
Figures from the latest quarter show that almost 33,000 ESA applicants who went for an independent assessment with a health professional were found fit for work. Almost 70,000 who applied for the ESA withdrew their claims before they were tested.
Liz Sayce, chief executive  of Disability Rights UK,  said: ‘The Work Capability Assessment asks questions like “can you raise either  arm to the top of the head  as if to put on a hat or  mount or descend two  steps unaided?”
‘But there is no evidence this has any bearing on whether you can actually work. It depends on the job and whether you get the adjustments and support you need to do it [such as a lift to get up the steps].
‘Many disabled people can work with the right support – and want to – but the test itself is a shocking waste of taxpayers’ money.’
Kaliya Franklin, a disability rights campaigner who has written a report exposing the ‘misery’ inflicted by the current testing regime, said: ‘I think we do need to have tests but they need to be fair and independent for everyone. We don’t want a system that is easy to play.
‘The biggest problem is that the DWP wrote into the original contract with assessors ATOS that just 11 per cent of people can go into the support group [those who will continue to get disability benefit of some form].’
Officials insist that they have tried to improve the tests by working with medical experts and charities to make them more accurate.
Tests now also look at  mental health as well as physical conditions.
the original link:  http://www.dailymail.co.uk/news/article-2522306/One-claiming-sickness-benefit-fit-work.html#ixzz2nFodnxWl