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.