the language of liberation

I attended the disability research forum at sheffield hallam today. As it seems is usual I had some thoughts that didn't quite fit with the discussion theme so I wanted to put these into words through my blog...

There are lots of parallels between the disability rights movement and other minority groups liberation campaigns. For example, within the LGBT movement the split between the biological and the social construction of gender and sexuality has been made to help understand their position, in the same way, the disability rights movement split impairment and disability with the medical and social model.

The thing that struck me today is that unlike the three liberation campaigns we were discussing today (autistic, LGBT and Deaf peoples liberation) the disabled peoples movement is missing something.

Within the autistic liberation movement (or as I learnt today the neurodiverse movement) they have reconstructed the language around autism completely and reframed it to neurodiverse/neurotypical to differentiate between the two groups that have been constructed.

Within the LGBT movement once again they have reframed the term gay and lesbian to become more positive and the term LGBT is now typically used as a stronger and more powerful liberation group by such organisations as the NUS etc.

Within the deaf community there is a big difference between being Deaf and deaf. Although within english this isnt a distinctive difference, within sign language it is, so it makes more sense in that context. However, this distinction is made to differentiate between  those people who feel more along the lines of wanting to be cured of their deafness, and wanting to fit in with society, and then those who feel that being Deaf is a cultural minority and it is the responsibility of wider society to fit in to their world and learn to sign with them. It is a very similar link to the medical and social model debate.

So, why is this done? Well, by completely changing the language of the argument means that the people changing it become in control. Not only that it stops the confusion that still exists around which 'disability' people actually mean. It makes a clear distinction and definition of difference. As in, we are now working in a different framework and have adjusted our language accordingly. It can create a feeling of community and cohesion amongst those who identify within the new language and a new identity.

Although the disability rights movement has attempted to change the meaning of the word disability by splitting it off from the medical impairment, by not coupling this with a completely new way of defining and describing this change has left people feeling confused and a weird situation where you have to actually define what you mean by disability when you say it. I'm not sure what the answer is, but by looking at the other movements today made me think that perhaps it is this that is lacking from the disability rights movement and that it is something that should be considered?

What price a tenner?

Today is international disabled peoples day (I'm british don't you know), which is also ironically the day I received my yearly insult from the government in the form of the Christmas bonus.

Its ten pounds. Yes really, ten quid. Its quite an insulting and somewhat tokenistic amount of money, and hasn't changed in all the ten years I have been receiving DLA. Now, I appreciate the thought, and it is quite sweet, but in this age of austerity, shouldn't the government be first looking to weird little traditions such as this first when considering how to save money?

Just think, there are 2 million people claiming DLA. So thats.. 20 million pounds. Add another 2 million onto that for postage and admin costs and it all adds up.

Now I'm not begruding my tenner, I really do appreciate it, honest. But choosing between ten pounds and having no DLA at all because its being reformed? I can do without my tenner thanks government. There are better ways to show you care.

an open post to all involved in activism...

I remember that first time I felt called upon to act. To make a stand for something I believed in, despite the many barriers I would be facing to participate and march for the hardest hit. I came away from that protest empowered and empassioned to make a change. I realised that it was possible for a small group of people to change their world, if they were committed enough. I became a disabled student activist, an elected representative both locally and nationally and a passionate campaigner for disabled people.

And then, it all changed. The reality of politics hit my ideological view of activism and dirtied the water. Ultimately, the inherent twists, turns and the constant who’s allied to who and trying to work out what’s really being said is a sad deviation from the ultimate goal of change making.

I didn’t come into this to make friends, but to make change. It seems however, that there are some people I have to be seen to be friends with and some not in order to advance my agenda. Call me naive but i genuinely believe it shouldn't be like that.

At the end of the day, it’s all a distraction, and at the end of the day it feels like nothing gets done barr bickering and arguing amongst ourselves. When there is more than ourselves at stake, shouldn’t we be putting ourselves aside for the greater good?

I’m writing this because I have become disillusioned with politics, student activism and the disabled students campaign. I have to be honest, I don’t know what’s next for me anymore.  I am so passionate about making change, and so passionate about representing people, but when I get hit back by other things it just gets in my way and it leaves me exhausted. Should I just give up? Walk away? Or is there something, some one, to keep fighting for? Will it ever change? Someone out there give me some hope of a better future, or at least a feeling of some sort of humanity in all I do.
Anyone?

Whose mental health is more important?

Guest post from an email I received, didn't know what to do about so with permission blogging the story to get it 'out there' any help much appreciated. I am writing this in first person for ease of read.. :)

I live in a council flat, have done for five or so years. Its great here, really quiet, nice neighbours, great location and I'v made it into my safe space and sanctuary away from the world. Well, I guess I need to, after all I have mental health problems, and life gets too much for me. To know I have that space to retreat to gives me some form of stability.

Until tonight that is. This is the third time my neighbours been arguing, really loud. I know they listen to their music loud, and although its pretty distressing, I can cope enough with it or retreat into my other room. However, for the last few months (I cant remember when the first 2 times were) I have heard really loud arguing. The first time I wasn't sure what to do, but after hearing loud thumps like furniture or something I called 999, and it calmed down. The second time it happened it was distressing me and causing me real phyiscal problems (dont want to go into too much detail here) so again called the police

Tonight, a friend was with me, and he was concerned enough so again we called the police. They came pretty quick, we could hear them. Then they rang me on my phone. It was explained to me that this guy was known to the police, they called round often, but there was no one else there and he was shouting at himself. In his attempts to reassure me he distressed me to the point that i dont feel safe in my flat anymore. Aparantly this guy has mental health problems, and was in regular contact with the mental health team, and had been assessed as ok to live in the community. I was welcome to call the crisis team myself, but acording to the police officer there was little they could do beyond that. I was also advised that if I was concerned at all about the loud noise to report it to the noise abatement team (which involves lots of form filling and not much action).

I am at a friends now, they were concerned enough about me staying there and I just want to leave and never go back at this point. I don't feel safe there, and thats no disrespect to my neighbour, but more about the lack of appropiate response from the police when I directly suggested the crisis team. Not only that, Im also concerend about how stable this guy truely is. Its scary to think hes only next door to me, and again not saying anything bad about people with mental health problems, I have enough of my own to be getting on with thanks, without having to worry about anyone elses. Surely I have just as much right to be safe in my own flat as he does to appropiate support and treatment etc. ?? What can I do, in the short term to feel safe, and in the long term. I dont want to leave my flat, I know I could end up somewhere worse, and I am really lucky to hae such a nice flat, but it needs to be safe. and thats just not safe...

Disability, Impairment and sexual identity.

I was on facebook last night, and someone posted this poster above. I have been struggling to get my head around trans, and other LGBT issues until I seen this, and I remmbered something from my course, and all the connections came together, and I really want to share it here, because it now makes sense to me as a disability activist why we should be supporting the LGBT movement and visa versa.

Ok,  so for anyone who doesn't know what the social model of disability is, it is the idea that it is society that disables people and not the impact that their impairment has on them. The social model seperates out the 2, seeing impairment as the medicalised, scientific bit and the disability as socially created, without any link between them. Although there is some arguement about the validity of this amongst academics, the social model is still dominant in the UK, and for the majority it works.

So, there is the social model. Its basically a rejection of science and a stand against it, saying that a person is disabled (and can be enabled) by society, and impairment is irrelevant apart from in a stark medical context.

So, how does this link to LGBT, and trans, and the poster above. Well, as it says on the poster "gender identity is not sexual identity" in the same way that disability academics and disabled people separate and distinguish between disability and impairment, redefining disability out of the body the same is true of LGBT. The separation of the biological "birth" identity and the resultant gender identity is key to understanding this. Although society sees this in the same way as disability and impairment is seen, as no different, there is in fact  a big difference between a persons sexual identity and their gender. 

Gender is a societal concept based and inherently linked to a persons sex. For example gendered clothes, and gendered toilets seek to separate, define and expect people to have the same identity for both. However, as the above poster states, trans people have separated the two identities and reclaimed their gendered idenity from society transforming it into their own concept. You can see this at work in disabiltiy activism, where disabled people reclaim the definition of disability and impairment and recreate it through the social model into a liberating concept. 

I have put a graphic below to help understand what I am saying visually. However, if you want to know more, this paper, which i hope is available elsewhere for free is a really good introduction to it, in a more academic style... http://www.tandfonline.com/doi/abs/10.1080/0968759042000284231

For both disabled people and those who define as LGBT the struggle against societies idea of normal in whatever context whether that is hetronormativity or normativity is very similar. We should celebrate this, and  recognise it more within cross liberation. There are differences between the two, but similarities can only bring unity.

Im resigning from the NUS.

 I am leaving the NUS national disabled students committee. I don't want to go quietly and I want to highlight how inaccessible and disabling my experiences have been with attempting to engage with the campaign. This hasn't been a one off, I am the second person to leave the national disabled students campaign committee because of accessibility issues. When such a big organization as the NUS can not get such basic things right for themselves I get worried for our disabled students who they represent. As always, disabled students are at the heart of everything I do and I will continue to fight for equality for all disabled students. We are entitled to an education. Here is my resigination letter. And to keep it positive, here is my video explaining my role as my unions local disabled students representative. Part time with a full time mission :) http://www.youtube.com/watch?v=e-u7NjhB4MI&feature=youtu.be make some noise, I dont want to go quietly.

I remember the national disabled students conference with a great deal of delight. It was the first time I felt properly disabled and properly enabled at the same time. It was a liberating experience, and my recent election to my local unions disabled student rep position made me consider being a part of the national committee.

I remember the speeches from the current committee. If you had the passion and drive to do it, then the small matter of being disabled wasn’t an issue, it was something to be overcome, not a barrier to participation. So I signed up, eager to instigate change and make a difference.

Then there was the fiasco with training being inaccessible which resulted in me not being able to attend and Robyn resigning. I hoped it was a one off and carried on.

When it came to the first meeting I found there were similar access issues that I had to battle with in order for me to get there. Unfortunately, it didn’t appear to just be a one off, but seemed inherent within the organisation.

When I attended my first training meeting I didn’t feel enabled, empowered and activated. I felt overwhelmed, disabled and pretty negative. I didn’t know if this was beyond me, and then the feelings associated with failing came about which just made it worse. I wasn’t sure if it was me or it was genuinely beyond my limitations. I spent Friday and Saturday completely exhausted and unable to function.

What I guess I am saying is that although it might seem ironic, my experience of the national disabled students committee is that it is a very disablist position. In order to meet the demands of the job, students have to have the ability to manage their impairment themselves, and be confident of themselves in their environment. I am not sure what reasonable adjustments and access needs I have, and as these change with every day, and different events it is difficult to pin down exactly what it is that is a barrier that needs to be overcome. I would need to sit and plan every detail in great length to know this, and with only being given 2 weeks’ notice of a meeting this is impossible.

I have spent the weekend not sure what to do, my future with the committee in question. I didn’t feel supported by the organisation to be enabled to attend, and I didn’t find the meeting itself particularly accessible, for me, a physical meeting is not particularly accessible for me in the first place and with no prior notice of the events I could not have forseen what barriers would crop up. For example I can’t read out loud, and I need advance copies of any reading materials as my reading speed is slow, and I like to be prepared. It might seem natural to mention these things, but for me I have so many access needs it would be impossible to write them all down just in case one might be relevant.

And then, this morning, I received a letter from the government. I have been placed in the support group of ESA for a year. It has kind of hit me really hard after the initial excitement of getting the benefit that I am really not well. I leave university in a years time, and I really want to spend this year concentrating on this brave new experience of not being at university, and out in the real world. I need to focus on me, the things I wrote about in the ESA50 form were real, and big things that I need to address in my life. I need to focus on becoming better, doing my degree and work out what I am going to do next. Its only recently that life has become harder for me as I have developed a new impairment that I need to focus on working out whats going on there etc.

I hope you understand that I don’t want to have to do this. However, when I am struggling as an impaired person it is difficult to have a disabled persons identity going alongside. I want to do the best job I can on a local level as my universities disabled students rep. I feel I can make a real difference there, and I think I have worked out that it is where my passions lie. When I am feeling so disabled by my impairment I need to be in enabling environments that reduce my disability so I am only facing barriers caused by my impairment (its a bit complicated I know but I am a complicated person and one who’s studied disability in great detail)

It is with regret that I feel forced to resign from the national disabled students committee, I hope you understand my reasons for this.

Thanks

lucia

Feeling supported...

I got a lovely letter from the DWP this morning. Personalised and everything. No really, they'd put a tick in the support group box and left the WRAG box empty and everything.

But seriously. I went through hell to write in detail about my impairments, and the effect it has on my day to day life, ironically the process itself causing me more problems. I followed guidance, sought help from anyone and everyone who would give it. I answered the form to the descriptors and not the questions.

I wasn't called for a medical with ATOS, despite their targets for getting as many people as possible through their doors. My form was read and considered, and my request to be put in the support group was upheld.

See, there are humans in that place after all.

Today's protest.

I might not have totally agreed with the protests that were happening this week, but I do agree that there is that right to do so, and I respect the people exercising their right. I was unforunately watching the live stream of the carnival like atmosphere outside the DWP head office on live stream when I seen a line of police without warning, provocation or reason storm into the protest from seemingly nowhere causing complete chaos.

What I can't understand is how this happened? It was only afterwards the Met police attempted to find out what was going on via twitter. Surely that should have been the first course of action. Just one look at the hash tag #DPAC or #ukuncut etc. would have led them straight to the heart of the people involved.

What scared me the most was their attitudes towards the protestors. They treated the vertical people as terrorists, despite the fact that the majority of them were probably disabled themselves. I know that if I were to attend an event like that (I don't think it will be possible though) the sudden change in atmosphere, the chaos, and the shoving and screaming and shouting would have probably caused me to collapse and have a seizure. I hope there was no one there today in that position, I was traumatised just watching it unfold. As for those in the wheelchairs it must have been terryfying to be in that confusion. The police came between the line of wheelchairs and the 'rest' of the protestors, literally blocking and barricading them in. To have no way to escape and to be shoved around must have been nasty.

Now I am not saying that these people were innocent disabled people, far from it. Nor am I saying they are above the law, or should be treated differently to other people protesting, if they are breaking the law. However, that being said, I do think that there does need to be some consideration of the people involved in the protest before storming in heavy handed, and if that is the best tactic. Disabled people do have additional needs, and there are important things to be considered. There appeared no order to what the police were doing, and their shouting for the whole group to move back was lost by the second row. It caused too much chaos to be effective.

What shocked me was the difference in the polices attitudes compared with the previous protest that occurred on Oxford street. The police there talked directly to the protesters through loud hailers, and requested people to leave. At that point it gave people who needed to get out for any reason (through impairment or other reason) the opportunity to do so. Those who wished to stay were doing so under the full knowledge that the police had asked them to move.

There were 2 protests today, one outside ATOS and outside the DWP. Apart from the internal part of the DWP protest I can see no difference. There were people standing outside. The only limitation was the space. Outside the DWP there was litterally no space, but there was a square at ATOS. Even if the intention wasn't to block the entrance, but to protest the entrance would have still been blocked.

I just hope that the police are held accountable for their actions today. It was completely inexcusable, and completely avoidable. They gave no warning, no reason and caused a serious ammount of damage. Regardless of any act of defiance, there will be disabled people who will not be able to protest after the events of today, and I am not just talking about the physically disabled people who were injured, but those with mental health problems.

Shame on the police, really shame.

watch it here: http://bambuser.com/v/2946786

today I hate the DWP

I hate the DWP today, or the government, both really. Let me explain...

I have finally been processed for my ESA benefits after claiming ESA since september 2011. I am hopeful for a positive result, but as nothing has come on paper, I am still waiting. So, instead of that nice little portrait the government made of a claimaints journey on ESA where you are nicely assessed by week 13 and all is wonderful I am nearly at week 52 of my claim and waiting, waiting waiting. None of this is my fault.

Now, lets add another complex matter to the equation. My gas and electric bills. Prior to being with my current supplier I was on a benefit tariff, and I always have been on a benefit tarriff, quite happily paying 20 pounds a month to cover my gas and electric. Last summer I stopped claiming benefits (I reclaimed in September) and so switched to my current supplier, who was happy to set up the direct debits at the same amount. Now, remember, I am claiming ESA, so in olden day language I should be not very well (in modern day language I should be dying). I struggle with finances (and detailed this on my form) so I dont really know what month it is, but I am happy that all my direct debits are doing as they should.

Now, a robot should have somewhere picked up I was paying way too little for my energy, but they didn't. Perhaps I should have, but I didn't. Perhaps they should have billed me more than every six months, but they didn't. So here I am, a year down the line with 300 pounds to pay them and no real clue how. They only apply the direct debit discount yearly, which will hopefully take 120 pounds off it.

So, how does me hating the government come into all this?

Well, there is such a scheme called the warm home discount. Basically those people on eligible benefits are entitled to 130 pounds off their energy bills every year. The supplier I was with stipulated that you had to be in the ESA support or work related groups, fair enough.

So I rang them today confident in the knowledge I qualify now, and have done all year, but because of some sort of government error have only just retrospectively become eligible. (I don't have my decision on paper so I am not saying anything here) O no, the scheme closed in February, and you can't apply now, sorry.

So, thanks to the governments failings with my benefits, I am now less 130 pounds. Theres no way I can go back to february and re claim it. I wasn't entitled then. But I am now entitled, and I have been since December. Now I hope you can see why I hate the government so much. None of this is my fault, I just hope I get a bit of money with my ESA award that can be used to pay off the debt (not that I actually needed it for anything, you know.. important)

The week of welfare and disablity stories.

These links don't directly relate to the paralympics, but I am pretty sure thats the reason behind this sudden explosion in the media of all things disability...

http://www.independent.co.uk/opinion/commentators/mark-steel/mark-steel-they-cant-be-disabled--they-can-swim-8084638.html
There's a company called Atos, that you may have heard of, and the achievement it's best known for is to be despised by thousands of the disabled. 

 http://www.guardian.co.uk/commentisfree/2012/aug/28/paralympics-world-of-possibility
A great backwash of enthusiasm from the Olympics will carry the Paralympics triumphantly through the opening ceremony on Wednesday night. It's the same stadium and the same format,

http://www.thestar.co.uk/news/sheffield-s-disabled-join-paralympic-protest-1-4873379#.UD205fzur58.twitter
DISABLED people in Sheffield put on a united front against the government’s chosen Paralympics sponsor.

http://www.guardian.co.uk/society/2012/aug/28/atos-3bn-government-contracts-paralympics?CMP=twt_gu
Ministers have outsourced more than £3bn of public services to Atos, the multinational IT firm whose sponsorship of the Paralympics has prompted a nationwide campaign by disability activists.

http://www.guardian.co.uk/society/2012/aug/28/hope-paralympics-games-normalise-disability?CMP=twt_gu
I've been waiting seven long years for the Paralympics. I'm a wheelchair sports fan (it's the same as being an armchair sports fan except I'm more portable).

 http://www.redpepper.org.uk/mythbuster-welfare-reform/
Welfare reform is almost inevitably contentious. Answering the question of who should receive how much financial support relies on often competing conceptions of fairness, with rival views about who needs, and who deserves, our help, not to mention the most just and efficient way of providing it.

http://www.guardian.co.uk/sport/2012/aug/26/tanni-grey-thompson-paralympic-star?CMP=twt_gu
Lady Grey-Thompson may be Britain's greatest Paralympian, a TV personality and a dame of the British empire, but if like her you use a wheelchair, fame and stellar achievement can count for little when confronted with the vagaries of the public transport system.

 http://www.bbc.co.uk/news/magazine-19365786
 Frequent air travel is part of a BBC security correspondent's job - but flying with a wheelchair is sometimes more difficult than it needs to be.

 http://www.independent.co.uk/sport/olympics/paralympics/time-to-embrace-a-new-team-of-heroes-and-rethink-our-attitudes-to-disability-8079299.html
 After a brief dose of reality, it all starts again on Wednesday night. The torch, the ceremony, the fans, the winners and losers and the overnight Team GB heroes.

 http://www.guardian.co.uk/commentisfree/2012/aug/23/paralympians-state-help-disabled-benefits-cut?CMP=twt_gu
 The flames are lit, the torches are on the move. Next week an extraordinary spectacle unfolds, revealing super-fit, finely muscled Paralympians doing things few able-bodied people could ever achieve. But will it change public attitudes – and if so, for better or worse?

 http://www.independent.co.uk/news/uk/home-news/paralympic-sponsor-engulfed-by-disability-tests-row-8084799.
 Paralympic sponsor engulfed by disability tests row - Home News - UK - The Independent

 http://blacktrianglecampaign.org/2012/08/28/seven-medals-but-now-the-tories-want-my-benefits-british-paralympic-gold-medalist-tara-flood-speaks-out/

Paralympic winner speaks out and says get Atos out of the Games
Paralympic gold medallist and world record holder Tara Flood faces a test that could see her lose her disability benefits, she told Socialist Worker.

The paralympics (an alternative headline story)

The BBC posted an article about the upcoming paralympics. In it, there is a lot of references to how far we have come as a society since those times and how enlightened our attitude towards disabled people are. I want to re write the article using London 2012, because its been bugging me how mis representative it is of disabled peoples day to day life in 2012.
http://www.bbc.co.uk/news/magazine-19366834

The 2012 Paralympic games in London is set against a backdrop of great change for disabled people across the UK. Thanks to the current government the Welfare Reform Act is threatening the income of tens of thousands of disabled people, and combined with the other cuts being implemented  is causing a serious deterioration in their quality of life.

Despite London having one of the best transport systems in the world, over half of it is still inaccessible to those people who use a wheelchair. The tube is partly step free, but even then wheelchair users are unable to alight the train without assistance. London buses, and taxis have ramps (when they work) but are limited to one wheelchair user, and on a bus, if a pushchair is using that space then the person has to wait for the next bus (despite this being illegal).

Despite the paralymic park being completely wheelchair accessible, the hotels around london are far from ideal. Access through the kitchen on a pallet lift is not a 21st century definition of access, but it happened (http://benefitscroungingscum.blogspot.co.uk/2011/06/two-girls-one-wheelchair-21st-century.html). Disabled people do unfortunately have to take it for granted these days, having to book train assistance 24 hours in advance, but it not turning up and being forced to throw themselves off the train to get off. Its not dignified but they get on with it http://www.youtube.com/watch?v=5EYTcFjkLWA.

Despite the modern paralympics being borne out of a doctors assertion that sport was therapy, disabled people live in fear of going to the gym, or any sort of activity. Thanks to the DWP and the daily mail, the seemingly consistent stories of disabled people playing sport (of all things!) and defrauding the government of benefits has been etched into the public conciousness resulting in disabled people not able to enjoy sport. http://www.dailymail.co.uk/news/article-2114356/Waterslide-disability-benefits-cheat-caught-camera-luxury-south-France-holiday-forced-sell-house-pay-thousands.html Despite the fact that it is benefits such as DLA that are actually enabling some of the GB athletes to take part.

Thanks to the hours and hours of TV coverage, and channel4s superhuman style adverts,  peoples attitudes are going to become even more hardened to disabled people on benefits. Crys of "well they can do it, why can't you" will be heard across the country, and the scrounger rhetoric will become entrenched. In the last 3 years attitudes towards disabled people have become a whole lot worse, with hate crime on the rise and discrimination becoming commonplace. This is despite the laws designed to protect disabled people.http://www.scope.org.uk/campaigns/disability-discrimination/disability-hate-crime

Thousands of disabled people would be grateful for any job, as would any able bodied person. However, the jobcentre still attempt to put disabled people who are highly qualified into meaningless training schemes or inapropiate low paid work.

Despite the great sporting event going on, thousands of disabled people are at risk, from cuts and a poor quality of life. Thanks to the implementation of ESA disabled people are committing sucide as they can not cope with the barriers being placed in their way. Behind the games, people are organising protests, doing whatever they can to highlight the plight of disabled people, who after 50 years are still on the margins of society and still struggling to have equality. http://www.dpac.uk.net/2012/08/latest-information-on-atos-games-week/

you cant be specific without being general.

this post is about the news today concerning right to die, right to live. the story is here.

http://www.bbc.co.uk/news/health-19249680
A man paralysed from the neck down has lost his High Court case to allow doctors to end his life without fear of prosecution.

so a bit of a take care with this blog post because of content warning.

I stumbled into an argument about the news that a paralyzed man isn't allowed to die earlier. I seemed to be in the minority, of one, to think that it was the correct decision. I think, if it gets flipped on its head a bit, the story becomes different.

If within the UK and this society that we live in there is an assumption that paralysis reduces the persons life to such an extent that there is no longer any quality of life, then that is a dangerous and often untrue assumption. One only needs to look at the paralymics to see the counter argument. The quality of a persons life is surely determined by the care they receive and the enabling aspects of that care to be holistic and look after emotional, spiritual as well as physical needs. Again, its social model ideology that I am thinking of, that if a person doesn't have any quality of life, should we be looking at the persons impairment or the ability of the person to engage within society at whatever level they are able to?

I also want to make the point that if we allow this person, or any of the other people who wish to have the right to die, then it sets a dangerous precedent  within law to say that when someone becomes disabled, their quality of life reduces and its ok to think about death for this person (just imagine what the DWP would do with that...) 

Although, the people I was having this debate with couldn't see the link. They seemed to think that this one case should be dealt with in isolation and it wouldnt have any impact on any future law or policy. However, I don't think its possible to be specifc without thinking more generally. Nothing happens in isolation, everything has a consequence, every action an equal and opposite reaction.

In this case, you cant be specific without being general. The general right to life debate applies here, it cant be got away from. The actions from this event has an impact on many thousands of others. It has to be considered in general, as well as being specific.

..but I can't (or the after effects of the ESA50)

"I'm sorry I can't do that, I'm disabled."

Its a phrase I say all the time and I suspect many disabled people say it. It is an empowering and liberating experience to be able to state your limitations and be able to confidently assert the reasons why. It usually gets the desired effect, either by sheer shock value or being to scared to counteract it.

However, in my life the word cant has been equally disabling. Its as easy to say I can't as I can, and in all honesty its only been in this last 10 months that I have been saying, well maybe I can actually, despite my impairment being disabling. Being able to recognise my limitations has actually been liberating. The daily constant of you can't do this because of your impairment and the way society works slowly got to me and I started to believe it for myself. Its a big cycle, once you get into it, its easy to get other people to do it for you, or just not do it at all. The excuses become easier, and more believable, even realistic. I do it out of protection sometimes, so I wont get hurt.

In the last ten months things changed. I started to take a very slow step out of my comfort zone. I went to a hardest hit protest in Leeds. By myself. On a train. On a saturday. I felt like the character that Jim Carey played in Yes man. He goes to a motivational speaker who encourages everyone to change their lives by saying YES to everything, no matter the consequences. I was saying YES I can for the first time. I survived by taking photos and becoming a bit separate from it all. As a result of that I made a friend who introduced me to student activism, and I learnt the power of I can. I went on to do amazing things, and I am still doing things that I am scared of daily just to make sure I can still say yes, despite everyone and everything saying no. (I always was a bit of a rebel)

However, over the last 3 months since stopping university for the summer that I can't attitude has slipped back into my life, and now it feels like its here to stay again. What has made it become a permanent resident in my vocabulary has been the dreaded ESA50. Although the governments promise to change the system to look at what a person can do, it is inherinately going to be focuing on what a person can't do.

Having to write I can't do this because of this is really hard, because I have started to believe it. Now I am not saying I am lying on my form, because I genuinely can't do all the things I say I can't. However, because I am only writing about what I can't do, it puts it all into sharp focus that I can't. Even the things I can do aren't up to a normal persons standards. Normal people can catch a bus all the way into town without having to get off, but I can't. However, I have to remember that the fact that I am even willing to try is an achievement in itself.

But its hard. That constant nagging of I can't comes back, and then I start to not do things, because I can't and I can't actually tell anymore what I genuinely can't do, and what I am just saying I can't do because I am convincing myself that its beyond my capabilities. It is a really hard balancing act and its one that I was just about managing until my ESA50. To be able to come out of an I can't situation having worked out a way that I can is a real achievement for me, and one that I'm strugglnig with at the moment.

Of course, I can does come with  sacrifices. I went to a training day the other week in manchester. I went with people who know me, so the train wasn't so traumatic (and we had booked seats) but despite saying that I can get to the event, I only lasted until 3pm, and had to get a train home. I spent the next 5 days completely wiped out. But there I am again, using that as a reason not to try it again. As a disabled person things do cost. But, despite only being able to attend 2 thirds of the day I still say it was worth it. I just have to re find the attitude of can do, even in little things and slowly start to build back up to saying I can do, or how can I do to a lot more things.

friends plus

I don't have many friends. Thats not a cue to feel sorry for me though, I like it like this. The few good friends I have I know whats what with them, and I'm not forever second guessing if they still like me, I know they do, on the whole. However, recently I have noticed something about these friendships thats a bit weird and wanted to share and see if its a common thing?

I call it friends plus because as a disabled person, people never seem to be 'just' friends. Even its a stupid little thing like buying the drinks, there always seems to be that unwritten rule that being my friend involves a little bit extra. I don't expect it, or even demand it, it just seems to happen like that.

As time goes on and friendships develop and we get to know each other more, then so do the extra things that happen. I know that this happens in most friendships, but it seems different somehow as a disabled person. There are unwritten rules involved as people get to know me, and more importantly my limitations. I don't say that this is disabling, of course not, its enabling, but its just weird that there is some sort of care (in the professional sense) involved in all of my really good friendships. It places an extra expectation and an extra dimension onto the friendship.

Its similar to a loved one, like a family member or partner being expected to care for someone if they can no longer do it themselves, but in a less intense, obvious way. I hope its not, and I don't think it is a negative thing. If you like me you have to look after me a bit sometimes too is to me, like saying I accept all of you all of the time, regardless of what that means. I guess its just the way its done. If a friend expected me to be grateful for whatever it is they do for me then I think it would get tiresome, but with my friends helping me recover from a fit is just the same as sitting and chatting over a coffee. Its just a part of everyday life.

In some ways I am grateful that I am open about being disabled, because at least I know I have good friends and ones I can rely on. They also know they can rely on me, because of that openness. If they need me, they know I will help them out too, it goes both ways, just in a slightly different way sometimes.

It does affect the balance of control in a friendship though. Sometimes my friends are very much in control and being a care giver as oppose to a friend, and at times it is hard to think of yourself as any more than just a burden. But thats when my friends turn around and remind me that its just part of life, and the balance restores itself.

the boundaries are blurred with any friendship, but I really think that with a disabled person it can be more extreme and sometimes difficult to manage, but perhaps thats just me....

todays big news...the government is listening...

Unless you dont happen to live on planet spartacus you have probably heard this story from Sue and Kaliyas blogs:

http://diaryofabenefitscrounger.blogspot.co.uk/2012/08/guest-post-from-mind.html

http://diaryofabenefitscrounger.blogspot.co.uk/2012/08/breaking-news-possible-new-wca.html

Basically, the DWP are going to work with some pretty big charities to improve the work capability assessment for those like me who are claiming ESA.

Now I haven't sat and looked at the descriptors in great detail, or even thought about how these changes might affect me, because I don't think that these are important at the moment. Until there is a need or a request for help and input the details are subject to change and improvement.

What I think is the most important thing is what this symbolises. This news goes as far as we are going to get to an apology. The DWP are saying these descriptors are not good enough and we need your help. That in itself is amazing. It was only january that spartacus offered the DWP their help in the form of a big document analyzing the new PIP and the welfare reform bill, and it was spectacularly rejected by the DWP, ironically making it more popular. It was only last month that the director of mind quit over not being listened to on this exact subject. http://www.bbc.co.uk/news/uk-politics-17590426 .

I dont know how and I dont know why, but somehow the government are now listening to people about the new Employment and Support allowance and its problems and are making attempts to sort it out. I am cautiously optimistic about this, there is probably some reason behind it that wont be revealed, but at the moment it doesnt feel like it matters. The government is listenning. That has got to be cause for celebration, and a first.

Once the descriptors are scrutinized and hopefully improved we can worry about the application of  medicals and the practical elements of the benefit and how its administered.

Unfortunately ATOS are still there, and seems like they will be in the new PIP too. But if the descriptors are not flawed (or at least less flawed) then ATOS will have a whole lot less to hide behind and will be under alot more scrutiny by Spartacus and the government.

but yes, todays big news... the government is listening....

In defence of ATOS

http://www.guardian.co.uk/sport/2012/jul/31/disabled-cuts-paralympic-games-atos?newsfeed=true

Now, before I get sent straight to the naughty step or similar, let me explain why I have found my self in the weird position of defending ATOS.

Last night, as we watched the 2 damming programmes about the work capability assessment, there was one key thing that kept screaming at me. ATOS are not the bad guys, well yes, they are bad and evil and whatnot but as dispatches showed last night they are simply enacting policies set out by governement.

ATOS are not medical experts, but IT experts. The government picked them because of their IT system and their promise of effeciency, and getting people off benefits, which was the governments target. At first it was wrapped up in the cosy ideology of getting disabled people into work, but now it has become more overtly about saving money.

The private companies are profiteering from peoples suffering, but it is the government that is letting them do it. If ATOS wasn't there, there would be hundreds of other companies to take their place, and potentially doing worse things to disabled people, but with more support from the government.

The government dont care who carries out their dirty work, whoevers cheapest and will save them the most money will do. The health professionals dont mind who employs them, they will still get paid. The problem has been and always will be the corrupt policies of Employment and Support Allowance that has ended up with 25% of ESA claimants that had been found fit to work are neither back in employment nor receiving benefits (http://www.guardian.co.uk/commentisfree/2012/jul/31/disabled-people-benefits-panorama?CMP=twt_gu) and if we forget that then we are in danger of misdirecting our anger.

Targeting the paralymics and ATOS as the article at the top suggests is going to happen will, as far as i can see stop people like you and me from being able to access ATOS for our benefit. Now I know this might be a good thing, but any slowdown in my ESA process will only stress me more. I would like my decision ASAP and if I have a medical on the dates of the protests then I will not be impressed at an anti ATOS party being around to 'support' me. It will harm the reputation of ATOS and implicitly link them to the failures of the WCA, which is simply not true, this is government policy, not ATOS policy. If the government has any sense, they will simply turn around and give us what we want, IE. sacking ATOS, but simply replacing them with another private, profiteering company with the same aims and objectives and so the cycle begins again.

Dont you see? ATOS are not the problem here, the law and the whole system is the problem.

links related to #onthesick and #panorama.

hi.. keeping all the links together. first the links to the tv shows (probably only work for a while)

http://www.channel4.com/programmes/dispatches/episode-guide/series-117/episode-1
channel4 dispatches-britain on the sick

http://www.bbc.co.uk/iplayer/episode/b01lldrc/Panorama_Disabled_or_Faking_It/
bbc panorama - disabled or faking it

http://www.channel4.com/programmes/dispatches/articles/britain-on-the-sick-reporter-feature
Britain on the Sick: Reporter Feature

 http://www.guardian.co.uk/society/2012/jul/27/disability-benefit-assessors-film?newsfeed=true
Atos assessors told to keep disability benefit approvals low, film suggests. (firday 27th july)

GP applied for job with Atos assessing whether benefit applicants were fit for work, and secretly filmed his training
 http://www.dailymail.co.uk/news/article-2180833/Off-sick-decade--acne-cough-The-astonishing-cases-885-000-benefit-claimants.html?ito=feeds-newsxml
Off sick for a decade... with acne or a cough! The astonishing cases among 885,000 benefit claimants

 http://www.telegraph.co.uk/health/healthnews/9436969/Disability-tests-sending-sick-and-disabled-back-to-work.html 
Prof Malcolm Harrington, the government appointed adviser on testing welfare claimants, admitted the work fitness test was “patchy”.


 http://www.dailymail.co.uk/debate/article-2181480/Paralympics-just-genuinely-disabled-able-achieve-compared-scroungers.html
The Paralympics will show us just how much disabled people can achieve, and shame despicable benefits cheats


 http://www.dailymail.co.uk/news/article-2180899/Flawed-disability-tests-send-genuinely-sick-unable-work.html?ito=feeds-newsxml
Flawed disability tests 'send those who are genuinely sick and unable back to work'

http://benefitscroungingscum.blogspot.co.uk/2012/07/panorama-disabled-or-faking-it.html  Panorama has revealed evidence of disabled or sick people being cleared as fit to work by the Government’s Work Capability Assessment in spite of medical advice given by their own GPs.

 http://www.guardian.co.uk/tv-and-radio/2012/jul/30/tv-review-panorama-disabled-faking?newsfeed=true  review of disabled or faking it.

http://oxfordstudent.com/2012/07/29/atos-healthcare-still-profiting-from-misery/ Whilst the Olympic opening ceremony, quite fairly, glorified our National Health Service, it is nonetheless worth remembering the real state of affairs for a significant number of Britain’s sick.

 http://www.newstatesman.com/blogs/staggers/2012/07/work-capability-assessments-fightback  Encouraging news out of the High Court on Thursday for opponents of the loathed Atos' work capability assessments (WCAs) : the court granted permission to two disabled people for a judicial review to challenge the operation of WCAs.

  http://blogs.independent.co.uk/2012/07/31/benefits-and-targets-sickness-and-disability-are-not-the-same/ Benefits and targets: Sickness and disability are not the same

 http://www.publicfinance.co.uk/news/2012/07/government-urged-to-end-negative-rhetoric-on-benefit-claimants/ Government urged to end negative rhetoric on benefit claimants

 http://www.4rfv.co.uk/nationalnews.asp?id=148179#.UBftL3D8lKA.twitter  Disabled People Worry About ‘Benefit Scrounger’ Discrimination

 http://www.thebureauinvestigates.com/2012/07/31/tough-love-or-tough-luck-assessing-disability-benefits/ Tough love or tough luck: assessing disability benefits

 http://www.guardian.co.uk/commentisfree/2012/jul/31/disabled-people-benefits-panorama?CMP=twt_gu   Sick and disabled people are being pushed off benefits at any cost

As Panorama showed, the pressure on medical assessors to declare sickness benefits claimants fit for work is immense

 http://www.thesun.co.uk/sol/homepage/news/4463724/Lazy-benefit-cheats-give-people-like-me-a-bad-name.html

 Lazy benefit cheats give people like me a bad name

 http://www.dailymail.co.uk/news/article-2181365/Out--Boss-incapacity-benefit-crackdown-called-humanity.html

Out... Boss of incapacity benefit crackdown who called for more humanity

http://www.bbc.co.uk/news/education-19048294  Benefit cheats 'colour attitudes to disabled people'
 http://www.morningstaronline.co.uk/news/content/view/full/122071 Pressure piles up on sick profiteers Atos

http://www.scope.org.uk/news/blogs/scope-blog/dispatches-wca scopes blog

http://benefitscroungingscum.blogspot.co.uk/2012/07/q-when-is-target-not-target-when-its.html?m=1 when is a target not a target
http://www.mirror.co.uk/news/uk-news/steven-bick-doctor-claims-government-1172457#.UBZceS3hi1Q.twitter 'Driving disabled off benefits': Doctor claims Government has issued targets for 7 out of 8 to be reclassified as eligible for work

  http://www.bbc.co.uk/news/uk-politics-19046447  Reviewer of fitness-to-work benefit tests to stand down

http://allbigideas.blogspot.com/2012/07/on-sick.html my review of on the sick

  http://www.guardian.co.uk/sport/2012/jul/31/disabled-cuts-paralympic-games-atos?newsfeed=true
Disabled anti-cuts campaigners take the fight to the Paralympic Games

Activists to protest against sponsorship of the Games by Atos, the private firm that carries out government fitness-for-work tests

http://www.newint.org/blog/2012/07/31/atos-stories-plays/
Raising the curtain on Atos

 http://www.mirror.co.uk/money/personal-finance/32-disability-benefit-claimants-die-1197304
 A company that tests the sick and disabled for benefits told dozens of people they were fit for work – shortly before they died.

 http://mikesivier.wordpress.com/2012/08/01/disability-benefits-whos-really-faking-it/
Earlier this week, both Channel 4 and the BBC gave us new documentaries about the way disabled people’s claims for state benefits are assessed. On Channel 4, Dispatches offered “Britain on the sick“, while the BBC’s Panorama was entitled “Disabled, or faking it?”. Both are available to watch on the web at the following addresses:

 http://blogs.spectator.co.uk/coffeehouse/2012/07/tough-love-and-fitness-to-work/
 By some quirk of planning, Channel 4 and BBC Two ended up showing two very similar programmes last night about the mess of the assessments that determine whether a sick or disabled person is able to work.

on the sick..

on the sick was a whirlwind of television drama, and hopefully the primetime exposure that spells the end of the work capability assessment as we know and dread today.

It focused on Dr Bick, who went undercover to become an atos assessor. He learnt, and exposed what activists have been saying for months and years. DWP is forcing people off sick benefits and using ATOS to do it.

I think thats the main point. This is not just ATOS, this isn't just a dodgy company out to get disabled people. This is a systemic and endemic attack on disabled people who are incapable of defending themselves against the reforms that were originally designed to support people into work, but as the tv showed tonight has turned into a farce, where only certain types of cancer are entitled to benefit, and if you can push a button, you can work.

What sort of country are we living in? Where people are considered fit to work if they are facing cancer, or severe life limiting illnesses. As the quote goes, the sign of a civilised society is how you support the most vunerable

Getting rid of ATOS will not work, reforming and tweaking the benefit will not work. Only a complete re think of the entire benefit itself will actually work.

As Sue Marsh said, How terminally ill do you have to be to be considered ill enough for benefit?

Lets hope this is the beginning of the end.

DWP strikes again... 77,000 drink and drugs addicts on disability benefits

http://www.telegraph.co.uk/news/politics/9436799/77000-drink-and-drugs-addicts-on-disability-benefits.html

as per usual the DWP have released damming figures attempting to justify the need for reform, and yet again, they have spectacularly failed to do so. In the above link a set of statistics have been cobbled together to claim that over 77,000 people claiming disability benefits because of drugs or alcohol.

Well, actually daily telegraph, i think you added up 2 and 2 and got 77,000. These are the stats they used, released by the DWP.

"34,410 people were receiving Incapacity Benefit because of drug or alcohol problems and another 21,890 are getting Employment Support Allowance, the new form of the same benefit"

"Another 21,350 received Disability Living Allowance."

These are 2 completely seperate benefits, payable for different things, and can be paid at the same time. DLA is non means tested, and payable whether a person is in work or not. Incapacity and ESA is an out of work benefit.

Further down the article they state that these figures are based on people whose primary conditions are drug or alcohol dependency, implying that the rest of us scroungers are downing drugs and drink to cope with our lives.

However, the DWP have seemingly made a number of errors with the release of these stats. 21,890 people are claiming ESA because of drink or drug dependency.That is to say that the new 'tougher' benefit tests, as administered by ATOS and shrouded in controversy are still classing drink and drug dependancy as serious enough for benefits. I say that carefully, not wanting to use deserving, but erring on the entitled to side.

So, either the DWP are stating that their own reforms are flawed because they have allowed these people with these impairments on to the benefit, or they are stating that drug and alchol dependancy IS serious enough to warrant entitlement to sickness benefit. Either way, its not really getting the message across they want is it?

my favourte bit of the article is this though...

"Iain Duncan Smith, the Work and Pensions Secretary, has said that lax checks have allowed many undeserving people to claim the benefit, and promised to overhaul it"

Last time I checked, benefits were not based on who deserved it, and who didnt, but on who actually needed it, and could prove they were entitled to it, via a set of stringent tests and evidence gathering. 

pretty packages tied up with string...

Well, after 4 weeks of hell I have finally completed the dreaded ESA50. It is well and truely my own form, as I have printed out each answer and attached it to the relevant section (seeing as most of my replies are 3 pages long it was appropiate to do this i think). I have hopefully idiot (and DWP and ATOS) proofed it. I have written my name and national insurance number on each page, written on the form that I have attached my answer and written such helpful things as please open and please turn over on the relevant pages... but I am still fully expecting one of the answers that literally took blood sweat and tears to write to be lost somewhere along the way when its being read by multiple strangers in the next few weeks.

I have attached 5 pieces of medical evidence, I have pleaded and begged with them not to have a medical and why im a deserving candidate for the support group. I even used all those undisabled words such as suffer and cant and condition. Well, i had to play their game. But for the record, its experiences not sufferes, its despite of not cant and impairment not condition...

As its due in tomorrow I now have the interesting conundrum of trying to get it back to them. Helpfully, in the first letter they sent me, they enclosed an evenvelope. However, they seem to fail to comprehend that a disabled scrounger whose been given a form to detail how much they cant deal with paperwork and forms might lose this envelope and despite their helpful letter to me reminding me of the deadline last week, didnt enclose any hint of how to send it back, should i have lost the envelope.... which i have...

Cue another amuusing problem. The ESA50 experience has left me in extreme ammounts of distress and barely able to function over this last 4 weeks. So trying to get the information that I need to get this sent back is pretty impossible. The advice that the letter says is to simply ring them if you have any problems, or need an extension for that matter. When I am not well, I can't use the phone, which was surprise surprise a question on the old PCA (now gone from the ESA50). So the DWP are well aware that some people just cant use phones, and that this problem gets worse when a person is not well. Lets send the scrounger the most hellish paper based torture method imaginable and then force them to use the phone should they need any help. Im going to have to go in to their office to see them and hope they can help and not just point me in the direction of a phone...

I have tied their lovely form together with a lovely red ribbon for them, so I hope they appreicate that. It was tempting to put kisses on it, but I think that might have been pushing it. I should enclose an official looking letter from myself reminding them they have 4 weeks to make a decision on my claim now, see how that makes them feel... (and pigs will fly if i get something in 4 weeks, its taken them nearly 52 weeks to send me the form in the first place)

One week to go...

As the lovely people from ATOS reminded me I have one more week to fill in my ESA50. Although 4 weeks isn't really long enough and I am currently going through hell trying to force myself to fill it in, I dont have a choice. You see the lovely, thoughtful people at atos will extend the deadline for you, if you ring them up. Seeing as I cant actually communicate on the phone when Im in a bad way, and if anyones tryed filling in one of these things they will know that every time I pick up the pen to write it will suck more energy and take me more effort to write than the hardest university essays, im not doing so well at the moment.

One week left of this hell, and then I am sure it will be a long time for them to make a decision, or call me into a medical, which will be another period of hell to content with. I thought this was meant to be a lovely positive new approach, looking at what you can do instead of what you cant. But then, seeing as it feels like I can do so little at the moment (its the affects of this form, highlighting how bad your life really is) there wouldnt be much to write about.

Filling in the form, it has made me go through so many emotions. Feeling like I am not worth anything, and I cant do anything to even thinking that I am somehow lying and its really not all that bad. Never mind the medicals, atos should be laying on mental health counselors to help people cope with the stress of this process. To have to make myself so vulnerable, and so let strangers read and judge the most intimate and distressing parts of my life in order to get enough money to live on is utterly degrading. The doctors letters and medical information doeskin seem to be enough anymore and this form of almost torture seems to have been slipped in unnoticed by the public in the name of fairness. Well, if your average man in the street had to declare how many times they became incontinent and give a great amount of detail about the reasons why and how before they received income, there would be outcry. 

If you havent seen an ESA form or what they ask, I encourage you to grab a copy from the DWP website, google ESA50 form, its a revelation. And dont think that the questions they are asking relate in any way to the points you are being scored on, because they simply don't. There is a whole raft of information on what they actually mean and how to fill out the forms, if you know where to look that is. It doesn't surprise me that so many people are failing to get ESA when the questionnaire they send is so confusing. Take for example this one. It asks if you can go out on your own? Well, yes I can thank you very much. But then if you look at the sub questions it actually contradicts itself and gives away what it actually means. Can you go to somewhere unfamilar to you on your own? well my answer to that is no I can't. And thats just one question.

Perhaps, if these forms actually asked the questions the decision makers and the DWP actually wanted to know there would be less stress over the medicals, and more accurate claims happening. The medical examination is only one part of the process. The ESA50 is just as flawed, but doesn't seem to get as much attention. In the same way that people are fighting for an end to the WCA shouldn't we also be demanding a change to the ESA50 fit for work questionnaire?  to me, that in itself is not fit for purpose, ironically.

Choices about food...

This is a little different to my usual blog, but I hope its still interesting, and it is linked to disability...


5 weeks or so ago I ate whatever and whenever I liked. I knew, and accepted that I was overweight, but didnt really know what to do about it, or even if I wanted to, after all there was no harm in it right? I thought I was doing alright and that it was a choice that I was making to not really worry too much about food, or my lifestyle. That the reasons lay completely with me and the choices I made.

And then, I joined up to this slimming group, and it shocked me, and continues to shock me how hard it actually is to choose to eat healthy food, both indoors and especially when I am out. I have now got some control over what I eat and the choices I make, but it is really hard to do so.

Take for example mc donalds. I can still go in there, but am restricted to either a chicken nugget happy meal and diet drink (but then I have to be careful what I eat the rest of the day) or a salad, which is still not perfect. Its the same everywhere, even down to places like a sushi bar that tend to cook their stuff in the deep fat fryer. Sandwich shops that use mayo and butter etc etc.

Isn't it scary when even a kids meal from a fast food outlet is too high in bad stuff for a proper balanced diet? And its not like its hard to be healthy when I'm doing it myself. I can still have burgers and chips (cooked with cooking spray that is) and lasagne and pizza and even chocolate (little bits of that though :) There are alternatives to everything unhealthy, which makes them really healthy.

So, what is it then? If I can't go into town without having a meal in my bag ready prepared to keep myself from eating junk, then surely it can't be totally my fault as to how I used to eat so badly?

All this questioning and searching reminded me of something else that I know a lot about. The social model of disability. Basically stating that it is society disables us and that disability can be significantly reduced by adapting and changing the environment etc. All of a sudden the problem (and the solution) didn't actually come from disabled people themselves, but from wider societies deficit and inability to intergrate and include everyone.

So, relating the social model of disability to the bad food choices that are on offer in a typical town, then surely it isn't actually the people themselves but the environment and societies expectations and structures that are at fault? If Mcdonalds started providing healthy alternatives to their menu, or changed their cooking styles to reflect the need to be healthy then would things start to change?

People will still have the ability to make bad food choices, but by providing good food choices then it no longer becomes a restricted environment for healthy eaters. If the social model of disability has encouraged a change in societies attitudes to disabled people, then surely thinking about obesity in the same context would also encourage a shift in attitudes towards food and lifestyle?

yesterday.

 Yesterday was a bad day all round.

I posted a few times and just want to copy my messages over to my own blog to keep a record of it all in one place...



I have just been to the GP, who has upset me greatly. he has referred me to neuro, but reckons its pseudo seizures, which basically means hes not taking it seriously, because he cant even misdiagnose me properly. its called dissociative seizures ffs.

reckons itl take a few weeks. until then?

nothing.

nada.

zero.

 Today, which has truely been horrendous I have hardly fitted, but more dissociated and only had a fit tonight after no periods of high stress.

Ironically, the doctor seems to have reffered me to the right place, so thats a small bonus. But to be constantly told I am somehow faking it, or its not really epilepsy is gridning me down.

but today I have been out for an hour, probably further than I should have and had a pretty good day so far.

My normal bloging style will resume shortly, at the moment im just using this to let it all out.

the black hole

i am sorry if this is a bit rambly but im currently lying down and typing on fingered as im recovering from yet another one of those horrible nasty fits.


i was having thoughts about that black hole time between initial symptoms, diagnosis and eventual treatment.

For my mental health problems, I had my first symptons at 16, diagnosed at 21 and eventually got treatment age 26. All through this time I was in constant ned of police, ambulance, hospital, benefits, people support etc. My impairment didn't stay in a nice comfy stasis waiting for this treatment, but went to the extreme end of bad, meaning that the first year of my treatment was spent undoing all the bad things that have happened since first symptoms.

and then, moving on to my current situation. If you look at my last 2 posts I have been fitting since the sunday before last. The toll this is taking on my body as well as my mental health is immense. I know that I am also trying to eat better, but a loss of 5 pounds in one week is a bit extreme and can only be put down to the fitting. From what little there is on the internet (ie a sentence) a one minute fit can be the equilant of a days exercise. I am having at least 3 of these, sometimes lasting 5 minutes.

Unfortunately, on discharge the hospital didn't refer me to neurology as promised. They have just sent a letter to the GP to do it themselves. Unfortunately, they wont refer me until they have spoken to me. Unfortunately I have had to go 3 counties away because I realisticly cant be left on my own and this is the closest 24/7 support I can get. Travelling back to home is really hard because I am so exhausted and its quite a way away, plus as I am a stubborn wotsit I dont like relying on other people, and even being looked after is a bit horrible for me.

I feel like I'm in a black hole. The awkard time between symptoms and treatment. I NEED help with this fitting, its having a negative impact on my overall wellbeing, as well as the potential of physical damage from fitting. I can't get anything for this until I get diagnosed and treatment, and yet by being not well I cant realisticaly access these things to do this.

I just hope it doesn't last as long as it did for my mental health problems.