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BADD 2014 – Nothing About Us Without Us?

It’s Blogging Against Disablisim Day!

There are loads of topics I could talk about today to illustrate disablisim, from the day to day grind of small & institutionalised oppressions to the cases where disablism ends lives. This year however I want to talk a little bit about internalised disablism that exisits within many, if not most disabled people. This is only a very quick post on a subject that could easily become a 10,000 word essay but hopefully it will give a few people something to think about.

When we think institutional disablism we think of classic cases which involve non-disabled people not thinking about/not caring about whether or not something is accessible. Be it because of steps, lack of suitable communication or allowing a atmosphere of exclusion to exist.

We don’t tend to spend much time looking at disablism many of us have picked up over the years and how it can effect our interactions with other disabled people – and it can effect those interactions. We really can be part of the problem.

I’m not saying it’s intentional, or that we are morally vacant monsters. As we are growing up we learn how to relate to different people by watching how others do it in the world around us and then we start to mimic the socially acceptable ones. We too are fed the same steady diet of media-bias, mis-information and unhelpful stereotypes as non-disabled people. We’ve all grown up in a disablist society. It’s hardly surprising then that some of them stick with us! I think it’s no great surprise that some of the best heard/most listened to voices in disability activism come from wheelchair users rather than people with cognitive or learning disabilities.

Certain kinds of disability are frequently left out of or marginalised within the conversation:

  • Severe Learning Disabilities
  • Developmental Disabilities
  • Congenital Disabilities
  • Cognitive Disabilities (including Dementia, one of the fast growing causes of disability in the UK)

It’s no coincidence that one of the most disabling aspects of these conditions is the ability to communicate the way that non-disabled people do. It makes it even more vital that we work to include these voices in our work if we want to make it stronger. I hear and read comments from wheelchair users about how they don’t want to be confused for wheelchair users with cognitive disabilities because it’s insulting. Isn’t it a sure fire sign that disablism is alive and well when we don’t want to be thought of as a disabled person? I watch as bright, interesting people who use communication aids are sidelined “because no one wants to listen to a computer”. We (disabled people) are not immune to taking the “easier” option of talking to a PA instead or talking in a patronising manner, straight away assuming a lack of mental capacity, something we’d hate to have done to ourselves. Being disabled does not make us immune to treating other disabled people in a paternalistic manner. It’s easy to think that you know better what someone needs than they do but that doesn’t make it right. Of course it’s not just individuals; far too often do I watch councils and organisations choose to talk to carers or people with physical/sensory disabilities about how to cater best for a clientele consisting mainly of people with cognitive disabilities. Shouldn’t they include the people they are supposed to be serving? Is this assumption that they “wouldn’t get anything useful from them” not just another way of propping up the disablist status-quo?

For years disability rights activists have clustered around the banner “Nothing About Us Without Us”. I think today is a good time to take a few moments to have a think about the inclusive meaning behind that statement and how we can best work to make it a reality.

 

 

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You can read all of this years BADD posts by heading over here!

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It’s been a tough six months

I’ve not been so well over the last 6 months and I feel like I want to explain myself.

A lot of what I’ve written about has been about how being a unemployed wheelchair user with a chronic pain condition effects my day to day life. This time, even though there have been a fair few big physical health flares in the last half year, it’s been my mental health that has been the biggest barrier to living my life the way I’d like to.

As you may or may not recall, in September I ended a 3 year slog of intensive psychotherapy. It was all part of the process to help me come to terms with, and move forward from my past. Five years of horrendous domestic abuse and three years of hell afterwards coupled with the trauma of being burned from neck to ankle and of being raped on top of dealing with becoming physically disabled left me needing some help to make sense of it all. It was very easy to believe that either the world was a terrifying place and that I was better off dead than living in it or that I brought all that stuff on myself because I was a fundamentally broken & despicable person (and was therefore better off dead). Feeling suicidal constantly is pretty tiring, simply living becomes such a battle there is hardly time to deal with anything else. Understandably I wanted that feeling to go away and was prepared to work very hard to get that noose off my neck.

Over the years I managed to come to terms with it not all being my fault, that maybe I was not some sort of monster, that people do not always view others with empathy and coincidence is something that really happen. I got some of the most debilitating elements of my PTSD under control, came to terms with the fact a pretty hard life had left me with a personality disorder & some pretty severe dissociative problems and learned to differentiate “not wanting to feel this way” from wanting to be dead. All in all it was pretty successful! The therapy ended as well as it could, I knew it was coming & we talked about it plenty before the end came. I left feeling like I had achieved a great deal and was ready to take a break from the process for a while.

I wasn’t expecting, and certainly wasn’t prepared, to be a victim of my own success. The thing is I’d learned to dissociate at a very young age and had come to rely on it heavily as a defensive mechanism. It makes it difficult for me to connect with my memories in a meaningful way – which helps to protect me from the pain but makes acknowledging & accepting it all pretty hard. I’d done a lot of work to break through that defense mechanism thinking that I could cope with what ever surfaced as a result. You can guess what’s coming next. It turns out I didn’t cope very well. The whole world became unbearably scary, every thing courted a panic attack, flashbacks started getting triggered left, right & center, I started sleepwalking when I wasn’t having nightmares and I stopped being able to manage interpersonal relationships as well as before. 

Because of the nature of the online world, especially when you work to raise awareness of issues like feminism and disability, I decided to step away before I let it exacerbate my condition. I ‘m sure I’ve missed out on loads of interesting conversations, debates and ideas – something I’m going to try to catch up on though it will take some time. I’ve missed you all and I’m looking forward to getting back to normal x

 

Job Hunting – Part One

“There must be something you could do”
“You’re bright and articulate, surely you can find a job”

“Employers will want you even with your impairments” 

“Disability shouldn’t be a barrier to work” 

“If you can manage voluntary work you can manage paid employment” 

The above is just a tiny taste of what I hear when I explain to someone that I’m not employed. I explain that there are some pretty big barriers to work which I face. Barriers I have tried to overcome quite few time to no avail. It seems that people don’t want to hear that though, maybe it’s that all too human desire to deny that sickness and impairment’s can have long lasting effects, maybe it’s supposed to be friendly encouragement or maybe, just maybe it’s a sign that I’ve just been unlucky in my attempt to find work so far.

I’d like to work, a life on benefits isn’t fabulous. Being poor, vilified as a scrounger and constantly cold isn’t something most people aspire to be when they grow up after all. Until 2009 I had gone 11 years* without a break in employment which tells me I was employable once upon a time at least. As it stands most people, myself included, think that when I’m well I could be a very productive (employed) member of society. It transpires that people aren’t so keen on you being a productive member of society if you are doing it voluntarily… but that’s another blog post.

Still, I’ve decided that as I’m in a place where my health has stabilised that it’s time to have another go at finding work. As I mentioned before there are some barriers that I face when it comes to finding paid employment and these are going to need over coming, or at least worked around if I’m going to find something permanent. I’ll list the three biggest;

  1. Hours/Schedule – my condition varies over the course of a day, I tend to spend at least 12 waking hours of every 48 in a state where I really cannot work. Really. I don’t tend to know when those hours are going to be either. This makes committing to a schedule extremely difficult and long term means I will probably have to miss a lot of shifts through sickness. It also means that I probably won’t be able to make up missed hours at a later date.
  2. Direct Access – I need to use a wheelchair if I’m going to move without being in severe pain. New Street in Birmingham is one of the busiest high streets in the UK but I can’t access a lot of the businesses on it with a wheelchair as a consumer. Most small-medium sized businesses have poor access, and even when they have wheelchair access for customers they do not have it for staff. If the job means going up or down a flight of stairs to use the loo or clock in then I’m going to really struggle. 
  3. Indirect Access/Environment – I have a mental health condition that can be easily triggered when interacting with strangers or in stressful situations. When it is triggered I do not have control over my actions, I may become ‘unprofessional’ quite quickly if I can’t get away. I wish it wasn’t the case but it is and there is no point trying to pretend otherwise; PTSD and dissociative disorders are like that.
There are other things but those three (I think) are the biggest barriers I need to overcome. I don’t think I’m alone in being in this situation so I thought it would be interesting to have a go at finding work and to write about my experiences.
I have spent over 3 years thinking long and hard about work that I ‘could do’ and coming up with nothing that isn’t doesn’t involve either not getting paid or learning a craft and struggling to make £3 a week on websites like folksy.com. As a result it’s become very clear to me that if I’m going to look for work I’m going to need help. 
The First Step.
Once upon a time when I needed help finding work I’d use a recruitment agency. Sadly a quick trip around Birmingham in my wheelchair taught me that you need to be able to climb steps if you want to use a recruitment agency in this city. Excuse me if I sound overly cynical but I doubt that companies who choose inaccessible offices will be particularly well versed in helping people with access needs find work. Hitching up my wheelchair blanket I resolved to think of another way to do things and I that’s when I remembered Igneus. When I was in the WRAG (work related activity group for ESA) I was referred by the Job Centre to a group who were initially called Work Directions, then later changed it their name to Ingeus. I was invited to about six meetings then told that I clearly wasn’t currently well enough to work and that I should come back if I started feeling better/more stable. I’m feeling more stable and wanting to give hunting for a job another try so I thought they’d be a great first step. Sadly when I arrived it was explained to me that I needed to be re-referred by the Job Centre before they’d help me. I was less than impressed given what they’d said when I last saw them. My local Job Centre was too busy to see me so I went home and hit the internet to see if I could find any help there.
I eventually found a group working in partnership with Birmingham City Council called Forward 4 Work and I decided to get in contact. They’ve sent me an application form (with a very very tiny space to list impairments & medication much to my irritation) which I’m currently filling in and dusting off a copy of my CV to send back with it.
As of yet I don’t have any more to add but I will keep updating my progress on this blog. Wish me luck!

* not that it was enough to get contributions based ESA grumble-grumble-grumble

WRB Is Back In The Commons

This morning (about 25mins ago) my local MP, Gisela Stuart tweeted that the Welfare reform Bill will be back in the House of Commons. Now, like most activists I’ve been watching the orders of business for Parliament looking out for a mention of the WRB and I’ve been pretty shocked nothing has been put up.

It looks like they are sneaking it in today under the title ‘Consideration of any Lords Amendment‘. I don’t know about the rest of the anti-WRB movement but this rather dirty trick to keep it off our radars (and therefore stop the frantic campaigning) seems like a win for us. By trying to hide it away they are showing exactly how much power campaigners have and how scared of us they are.

I’m going to do some more digging for clarification, I’ll pop any new developments up here.

Update @ 11.15 – just seen that they have changed the schedule to actually say clearly that they are debating the WRB amendment.

That amendment is of course, the Bedroom Tax. Under the WRB proposals those who have a second ‘unneccesary’ bedroom will face having to pay about £14 a week extra.

Of course the government has not told me where I am supposed to find a one-bed home for under £100 per week that has enough room to store bulky equipment, like in my case, a powerchair, a manual wheelchair, bathing equipment and a second bed for when I am in too much pain to sleep but need to be in bed so my partner can sleep before work the next morning. So far none of the social housing we have seen has the room (and we are ‘lucky’ enough to be so desperate as to have made it onto the housing register).

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