Archive for December, 2011

Going Home for Christmas

I’m heading home for Christmas and I’m pretty excited. The normal anxiety provoked by meeting well meaning people who always ask “What do you do?” Is out weighed by my excitement to see my family.

This year (thanks to a lot of forward planning & saving) we have been lucky enough to go to London before heading North to Yorkshire. We saw the ‘Nine lessons and carols for godless people’ last night at the Bloomsbury theatre. It was great, there were so many wonderful acts, it really started Christmas with a bang. It also introduced us to the phenomenal talent that is Grace Petrie. She was a beautiful cross between Billy Bragg & Frank Turner. Isy Suttie sang an ode to the seminal ITV children’s show, Nightmare (love her!). Everyone else (Robin ince, Simon Singh, Martin Austwick, Jo Neary, Jim Al-Khalili, Richard Herring, Alan Moore, Lucy green, Helen Arney, Matt Parker, Gavin Osborm, Josie Long, Scroobius Pip & Mark Thomas) were stellar too.

The theatre didn’t have labelled directions to an accessible loo (or staff that could take their place) which made life hard until we found a manager that did know where it was. The staff were all very friendly and when asked tried their hardest to help. Still, it was clear they were not accustomed to wheelchair users.

The following day we got a train from Kings Cross to York which was not the most enjoyable experience of my life so far. We got to the station with me in rather desperate need of the loo – I only get a little notice before an accident is on the cards sadly. So we made a dash for the only accessible toilet. There was a woman walking around looking at it so I quickly asked if she was waiting. She said it was locked. A quick glance showed it was part of the Radar scheme. I mentioned in the fire she could ask for a key from staff whilst I pulled mine out. She said she wasn’t disabled. With that I pointed her towards the reams of ladies loos on the platform & opened the loo for myself. When I got out there was a queue. The heavy door shut behind me and being in a rush I told them they could get a Radar key from the main desk or that the ladies was close by. It was then a rather angry lady decided to call me a rather rude name with a base in my disability before shouting that they didn’t want to walk & didn’t care it was the only accessible loo. Naturally my PTSD got triggered off and my other half quickly removed me from the situation.

We got on a busy train which was v.stressful as people would insist on blocking my wheelchair in with their cases out blocking the access to the nearby toilet (my life revolves around toilets these days). Every time I had to ask someone to move their bags I got shot dirty looks or passive aggressive comments. The train manager was no help either. To make things worse, when we arrived at York the assistance I had booked (I need ramps) wasn’t there so I was suck waiting for 5 mins whilst my other half hunted down help.
It’s experiences like this that really put me off leaving my house. What should have been a fun trip to the theatre & train ride home was made super stressful by my disability and other peoples attitudes towards it. I’m hoping for more fun now I’m with my folks.
I’m going to go have a drink and scoff some Christmas fayre. I hope you all have a very merry Christmas and a fabulous 2012.

"Oh… So Where Did You Serve?"

“Oh… So where did you serve?” Is a question I’ve had a few times since coming out of the mental health closet and openly talking about my PTSD (post traumatic stress disorder) diagnosis. I always reply that I have not been in the military, nor have I spent any time in a war zone.

It’s funny how much the media influences the publics perceptions of disorders. Most people when picturing a PTSD sufferer in their minds get a picture like the one below:

Picture of a white, male, American soldier in uniform looking overwrought

The average PTSD sufferer/survivor on a global scale is actually depending on your preferred way of looking at it is female and not a soldier. They are someone like me. Someone who has been exposed to a very traumatic event that was “outside the range of usual human experience.” Things like witnessing a violent/ unexpected death, rape, torture, sexual abuse, witnessing or experiencing life-threatening physical assault, terrorism, being held hostage and similar are often causes of PTSD. Where many people experience some level of trauma in their lives only about 8% of them will go onto develop PTSD.

So, what is PTSD? It’s a severe anxiety disorder caused by physical trauma and/or psychological trauma. It’s thought to happen when the brain is exposed to extreme levels of adrenaline which causes the brain to store & deal with the trauma in a disordered manner. People with PTSD have the following symptoms as a result of their exposure;

  • Persistent Re-experiencing – flashbacks (v.different from memories), nightmares, intense negative reactions to things that remind them of the trauma and other re-experiencing of the event.
  • Persistent Avoidance & Numbing – disassociation, seriously reduced ability to feel certain feelings and a desire to avoid anything that reminds them of the trauma.
  • Increased Arousal – hypervigillance and associated problems like difficulty falling/staying asleep.

In my case I spent years in a extremely abusive relationship where I was frequently abused (physically, psychologically & sexually) in horrific manners during which I was repeatedly exposed to the imminent possibility of my death. Looking back I’m still not sure how I survived some of the stuff. It all feels like a nightmare I can’t quite forget yet can’t bring myself to properly think about.

It’s funny, I can type about it sometimes but yet if I try and talk to someone about these things face to face my brain simply shuts down on me. I can’t hold the memory of what I was trying to say in my mind and I just end up opening and closing my mouth and eventually apologising for the fish impression and changing the subject. My brain is very good at blocking off the traumatic memories by either making it all feel like a dream or a story. Sometimes it shuts me down and I simply sit and stare into space, it feels like being simultaneously awake and in a deep dreamless sleep. Othertimes it drives me away from things that are likely to trigger flashbacks or re-experiencing. Occasionally it causes head pain so intense I feel like my head has been cut open again. Normally it just makes me forget things that I find extremley difficult to deal with which can be very problematic.

For the last year or so of my relationship and the years that followed I would have these intense re-occuring nightmares where the same horrific acts were being carried out by my ex. I’d find I would be unable to recall how I got cuts & bruises or why I was suddenly terrified of seemingly harmless things. It wasn’t until I escaped his reach that I really started getting flashbacks. Waking nightmares, memories so powerful they are indistinguishable from reality, like having time-travelled back to the time of the trauma and being forced to re-live it again and again. Imagine the most horrendous thing you have ever exprienced, the worst thing to have happened to you, forever etched in your mind. Haunting you with not just the old emotions but the smells, the tastes, the senstations on your skin. I hate them most of all. I think they are now the thing I’m most afraid of in the world. When they started kicking in I broke down. Having recently become disabled I lost the ability to cope as my mind crashed six months after my body. I lost the ability to sleep, lost the ability to disassociate for a while and ended up ready to kill myself. Luckily my GP intervened and got me psychiatric help where I was finally diagnosed and I began to get treatment.

I’m saddened to say that I’m not alone in this. I’ve met hundreds of PTSD sufferers online over the last few years and the overwhelming majority are female victims of domestic abuse, childhood sexual abuse, rape and domestic violence. Not white male soldiers – though I’m not ignorant enough to suggest my experiences are going to be representitive. Yet we often seem to be ignored when a discourse is opened up about PTSD, especially by the media. As well as the issues with inaccurate representation by the media fueling public stereotypes and misunderstandings it also can be very damaging for victims of the above traumas. Denial, silencing & victim blaming (often thanks to that pesky Just World Fallacy) is a really common experience for those of us who suffered in these ways. These problems create a feeling that people don’t/won’t take the horrid thing that happened to you seriously and more often than not they get internalised making survivors blame, silence and doubt themselves. Naturally this makes healing far harder. When the media ignores stories like yours and paints your struggles as being somehow less traumatising it adds to this nasty mess.

The more I think about it, the more sure I am that there is a gender bias in the reporting and coverage of PTSD which fuels the blackout of ‘womens issues’ with regards to the disorder. PTSD from ‘masculine’ causes like the serving in the military or in the emergency services is talked about far more commonly than PTSD arising from incidents that disproportionately happen to women*.

For plenty of reasons, male dominance in the media being a big one, people like myself are being left out of the PTSD discourse. If we want to move forward and stop creating a culture where some traumas are problematically rated as ‘less deserving’ than others, then things need to change.

* rape, domestic abuse, sexual assult – please note that no where did I say these things don’t happen to men.

Contributions Based ESA

As you are aware, I’m disabled and as a result of my specific impairments unable to find employment outside of the voluntary sector. I can’t claim Jobseekers Allowance, so I claim Employment Support Allowance (the new name for Incapacity Benefit).

ESA comes in two forms. Income based (ESA-IB)- which is given to everyone who has no income or a low income (partners income is assessed when working this out) and varies depending on severity of your condition. The other is Contributions based (ESA-CB) – which is given to you if you paid ‘enough’ NI contributions into the pot before you become unemployed/unemployable.

I got my first part-time job at 15 working as a waitress, I then graduated to part-time employment with a supermarket which I carried on with throughout college and university. After uni I had a few part time jobs until I started working as a low-level stock broker (no deals over £50k) and team supervisor full time. I left to start doing a PGCE in secondary science but it was at that point I became disabled. I was 26. I’d been working and paying NI pretty consistently for 11 years.  I assumed I would be eligible for both ESA-IB and ESA-CB, I was wrong. Many letters later I was told I had simply not paid enough into the pot to get any ESA-CB. Had I worked for another decade before I became disabled or been privileged enough to grab a high paying job early on then it would have been different. So I am only entitled to minimal rates of ESA-IB which is negated pretty much by my partner being in receipt of a Student Loan (designed to only support him).

I dislike contributions based ESA because it tells people like me, people who became disabled earlier in life who had worked (but not enough) or those who have been disabled since childhood that our contributions weren’t valid enough. It re-enforces the idea that we are leeches on the system. By becoming disabled at 26, before I was able to pay more NI, I get less money than someone with an identical condition that got struck down at 46 after 31 years of work. I think that’s unfair, why is someone who had an extra 20 years of good health more deserving than I am? In ‘rewarding’ those who don’t fall ill until later on you are sending out a message to those who fall ill earlier.

As I’m sure you are aware, there is a big furore around the governments proposal to time-limit contributions based ESA. The MS society is campaigning against it by sending a Christmas message to those in the coalition asking them not to bring in;

“…an arbitrary time-limit on Employment and Support Allowance for those who’ve paid into the system and still need support.”

What about the rest of us? Do we not count? Are we not worthy of support? Lisa Ellwood talks more about the charities focus here at Where’s The Benefit?

You get a pitiful amount of money to live on if you are disabled and unable to work, so taking away some peoples extra money is seen as really unfair. I’ve read a lot of argument’s from people that are being threatened with loosing their ESA-CB in the very near future, they all stem around the following themes;

  • I won’t have enough money to live on if you cut off my ESA-CB
  • My partner works so I wouldn’t be eligible for ESA-IB, I’d have no money of my own which would make me more dependant and vulnerable.
  • I’ve paid into the system so I deserve the promised financial safety net of ESA-CB

What these arguments all seem to be ignoring is the plight of those of us that weren’t eligible for ESA-CB to begin with. Lets go through those three arguments quickly.

  • If people getting ESA-CB can’t reasonably be expected to live on the amount the rest of us get then why should those of us who due to a twist of fate were not eligible for ESA-CB have to live on that little? If ESA-IB is too little to live on then why don’t we all fight to improve the level that allowance is paid at rather than simply fighting to make sure that those getting extra keep getting extra?
  • There are thousands of people, myself included, getting only ESA-IB who are forced into dependency on their partners because of the way joint incomes are assessed. Some people get ESA-CB which helps them not to be so dependant. What about the rest of us? If dependency is so bad then why are we only fighting for those with eligibility for ESA-CB to avoid the trap? Why are we not fighting for every person in that position to have their own personal income to protect them?
  • Why is it fair that someone who had the good fortune to fall ill after 40+ years of good health should get more money than someone who fell ill/ became disabled at the age of 21? Young people with disabilities that stop them from working don’t get the chance to pay into the system. There is no way they can get the contributions up over the little or no time they have. Is that fair?

By telling some people that because they worked for longer (which can be read as ‘didn’t become disabled enough to be unable to work at a young age’) or had the good fortune to be earning vast sums of money for the 3-5 years before they became disabled that they are more deserving of money & support. You start to develop a damaging deserving disabled vs undeserving disabled rhetoric. People with ‘x’ NI contributions are more deserving than those without. That is messed up.

I don’t have a race-to-the-bottom mentality, I don’t believe that because I’m not getting extra money that others shouldn’t too. I believe that we should all get a respectable amount of money to live on regardless of the age when we became disabled and our individual fortune up to that point when it came to finding work. I believe we, as a community, should be campaigning for a fair rate of ESA for all. Not just for a select group.

Christmas Market Follow Up

I’ve spent a couple of days ringing around the council to try and speak to someone with regards the abuse I’ve been getting when I pass through the local Frankfurt Market in my wheelchair. Clearly the combination of alcohol + no room to manoeuvre a svelte gymnast + hundreds of people combines to turn people into prats. Ranging from those the Internet would call concern trolls “I’m advising this for your own good, don’t come into this part of the city…” to those who clearly think they are being funny whilst showing their own internalised prejudice “Sponger coming through!”.

I’ve been passed onto more numbers which are ‘no longer in use’ than I can count and passed around between departments as no one seems to be sure who deals with this kind of complaint, let alone what the phone number is for them. One thing people keep coming back to is the issue of anti-social behaviour. Eventually, well this morning, I caved and phoned the local police force to ask for advice.

They passed me onto the City Centre team who were really lovely. They listened to what had been happening and told me I was right to talk to them about it. Of course a big part of it’s the councils responsibility but abusing someone trying to get from A-B simply because they are in a wheelchair is also not on. They thanked me for sharing my experiences and said they’d get someone to give me a call back about it.

I’m not expecting anything to change because of this one complaint. I am hoping it gets passed onto the relevant planners though, if only so that next year they perhaps put a little more thought into disability issues.

Birmingham’s Frankfurt Christmas Market 2011 In A Wheelchair

Every year for the last decade Birmingham has played host to a huge Frankfurt Christmas Market, to celebrate the twinning of the two cities. It takes place over the months of November and December. The one of the main shopping streets gets a sweet line of wooden stalls laid down the centre, the main thoroughfare between the shopping streets and the library, art gallery, the ICC, the Symphony Hall, the main ‘drinking & partying’ street and the council houses also gets stuffed with lovely little stalls.

Every year I see it as the only way to get from my bus stop to the Birmingham City Centre shops is to pass through it. There are some other routes which avoid some of it but to use them I’d have to be able to get my wheelchair up and down a flight of stairs – which is something I cannot do. On the whole there is a really lovely atmosphere. Everything is fun and festive and it makes me feel great to be a part of it. Sadly, those feelings are beginning to dissipate.

You see, on a normal day New Street is busy but that’s fine. It’s a really wide, pedestrianised street. Folks browsing walk slowly near the shops and those in more of a rush move down the middle. It’s brilliant. The market stalls (which sit back to back) halve the amount of space on the street instantly. Victoria Square has even more room taken by the twisting labyrinth of stalls. This would be slightly annoying on a boring Tuesday in May. On a Saturday in early December it became horrific. The regular shoppers/workers were mixed with all the extra Christmas shoppers and those tourists visiting the Frankfurt Market. It was yesterday (a Saturday) that I decided to visit the market with a small group of friends as it was the only day we were all free.

Trying to navigate it all on foot is taxing enough, trying to move an electric wheelchair through the crowd (let alone trying to get it to any of the stalls) was nigh impossible. It was too noisy for my horn, people couldn’t hear me shouting excuse me and ignored me tapping them on the arm if they didn’t respond to my verbal requests. It often took my companions shouting and holding people back to allow me to safely move. I don’t like to think about what it would have been like on my own. There was no way to turn around in my chair given how dense the crowd was, my turning circle is quite small, but still too large for that environment. Sitting just below eye-height also made life difficult as people tried to stand in me or push into the area I was occupying with my chair. No apologies were forthcoming, just glares for being in the way. I hope the pictures used above help illustrate just how busy the place gets.

I’d be miffed if that was simply it though; just some poor civic planning that is very hard to avoid if you are a wheelchair-user. Especially one wanting to access Birmingham city centre with minimal stress and discomfort.

Unfortunately, I neglected to mention that into the melting pot of the Frankfurt Christmas Market a generous helping of mulled wine, cider and other alcholoic beverages had been stirred. Most patrons of the numerous stalls selling warming festive alcohol were very pleasant but a number of others lost there ability to control their rather anti-disability internal monologues. The stalls selling alcohol are all over the market and are very popular. Especially on an extremity freezing winter afternoon. The numerous patrons, ever fearful of loosing their £3 deposit paid for the mug the hot-booze came in, densely pack around the bars and often fill the thoroughfares too. When trying to ask these people to ‘excuse me’ or to ‘just move a little to the right’ things got nastier. Here’s a selection of the less than helpful replies I got:

“Why on Earth would you come here?”
“Tsk. This is no place for wheelchairs.”
“Harharhar, ‘Wide-load’! Harhar!”
“Try walking next time sweetheart.”
“Tsk, lazy.”
“Sponger coming through”
“How stupid to come here with a wheelchair! What were you thinking?”

I just love being made to feel unwelcome in my home city. There is no feeling like it. My friends were wonderful and challenged the comments they heard but still, they shouldn’t have had too and I shouldn’t have had to hear that abuse. They may as well put up a sign that says “Disabled people only welcome when the market is very quiet”. I plan to complain to the Leisure and Culture department at Birmingham City Council with regards to this. It’s really not fair that people should be put in a position where they are subject to drunken abuse for simply trying to get from A to B. Actually, it’s not right that people should ever be subject to abuse. ‘Nuff said.

Hate crime directed against those with disabilities in on the rise in the UK and little things like poor planning can make it far worse than it already is.

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