The Hardest Hit

You may or may not be aware of the group The Hardest Hit [website & facebook links] who are working tirelessly to fight the unfair cuts being faced disproportionately by disabled people and their families.

They are planning actions through out October and you can find details listed by region here. I urge anyone who can attend to do so. I’m very happy to see the Sheffield Green Party have pledged to support their local actions, it’d be great to see other local groups doing the same.

Advertisements

Kerbs

I was writing a post about PTSD and misconceptions but that’s on the back burner for this afternoon I became filled with anger.

After having a rather good morning in which I got a huge round of applause on the bus for managing to manoeuvre my wheelchair into it’s  designated spot, whilst avoiding two prams and a chap who decided rather than moving out of my way he would just pretend I wasn’t there. I decided I would not get the bus back home, I would take advantage of my nearly full wheelchair batteries and the pleasant weather.

I hit a load of street works so decided to take a shortcut via the back of Harborne/ Edgbaston in Birmingham. It was then I found myself stuck in a maze of streets with no lowered kerbs/curbs. I have not sworn so much in a very long time – my apologies to any with a dislike of foul language on my twitter feed.

When I got home I sat down and using Write To Them I sent my local councillors a email detailing all the problems I met on such a simple journey and extending them an invite to come and see first hand how dangerous the lack of basic lowered kerbs is to someone using a wheelchair. I also included some information from the Disability Discrimination Act (DDA) 1995, which includes a public authority equality duty.

I can’t go a week without someone trying to tell me the DDA made it illegal for anywhere to be inaccessible, therefore everywhere must be fully assessable to everyone. The truth is much more depressing. Only businesses of a considerable size are required to be assessable, smaller businesses, councils, pavements, buses, the very homes of disabled people are not required by law to be assessable.

If we want to see better access as a community we need to start fighting harder for it. Buildings that refuse to provide wheelchair access need to be seen as buildings choosing to bar the entrance of wheelchair users. Councils refusing to make pavements accessible need to be seen as agencies complicit, even if it is simply through negligence, in furthering the inequalities faced by disabled people. Attitudes need to start changing so we can move onwards.

Charging For A Biospsy Is Sick

Yesterday I had a lovely phone call from my Mum (a nurse). We had a bit of a chat and catch up about this and that before I mentioned that I had seen York in the news recently. I asked her what her opinion was on the story a York based NHS GP surgery was sending letters out to patients charging them for minor operations.

Me: So what do you think? Especially as a A&E nurse?
Mum: It’s disgusting, but we had no choice but to pay.
Me: …excuse me?
Mum: Well it’s the village practice and your Dad was one of those that got a letter.
Me: The village practice? The one I grew up with?
Mum: Yes. Your Dad had a lump on his back and they wanted to biopsy it in case it was dangerous.They sent a letter to say because of cuts they couldn’t afford to fund minor procedures so they’d have to ask him to pay…

I was gobsmacked. I had expected her to talk about the effect it would have on A&E admissions in the long run rather than to explain that it was affecting my family directly. My father went to the doctors, worried by a lump on his back. Where he was told it could be malignant and needed a biopsy which understandably worried him more. The NHS GP’s then charged him for the biopsy. It disgusts me that they would do such a thing. They were checking to see if it was a tumor! Can you imagine what would have happened if he couldn’t pay? Can you imagine what would have happened if it turns out to be cancerous? My parents live in a village, they don’t have a choice of local GPs unless the drive. There are people in my parents village that don’t drive and therefore don’t have the choice. My father is privileged enough to be able to afford to pay for a biopsy but not everyone else is.

This is just a small taste of what’s going to start happening if the NHS Reform bill gets passed in the house of lords. I don’t want to see us move closer to a two tier health service where the poor have to choose between getting potentially cancerous lumps checked out and paying bills.

Today my thoughts are with all the amazing people who were able to make it to Westminster Bridge in London to take part in the UK Uncut action – Block the Bridge, Block the Bill. The NHS is too important to be destroyed. Free health care is too necessary to our continued fights for equality to be stripped away by a callous right-wing government.

"What’s Wrong With You Then?"

One of the first questions I get asked these days is usually “Why are you in a wheelchair? What happened?”, or “So what do you do?” which leads me to telling them I’m unemployed due to disability and then the “Why are you disabled?” question gets raised.
It always boggles me that people think it’s okay to pry into my health and (lack of) employment before they know my name. I understand why people are curious, I’ve become quite aware I don’t fit many lay peoples stereotype of disability. I look well, I have four limbs,  I’m articulate, I’m 28 and I can walk a little way without using my wheelchair. Other than my mobility aids & my TENs machine there is nothing about my appearance that suggests I’m disabled or unwell. People tend to want to know why someone who ‘looks and presents’ the way I do needs to use a wheelchair to get about? Why can’t I find employment? Why do I need my husbands help to wash? But most pertinently, they want to know if it could happen to them.
I never really know how to answer. I’m not brave enough to say “Sod off. Do you realise how invasive that question is? You don’t even know my name yet!” but telling the truth takes ages and often leaves me feeling really rather defensive. I have no problem doing so, but I resent the amount of times I have to tell the story, because it turns out saying ‘abdominal nerve damage’ doesn’t seem to cut it with the average questioner.
Now, because I’m blogging and I believe my disability will come into it a lot I think it’s only fair to explain what it is…
I got really ill at 14, my appendix burst, but no one caught for weeks (the doctors didn’t think I was ‘ill enough’) and it went to peritonitis. I got an operation at the last gasp which saved my life and afterwards I continued on as before. I stayed physically healthy until 2008 when a operation to remove a tumour that had enveloped my right ovary & fallopian tube as well as to aspirate a large ruptured cyst on my left ovary. 
When I awoke after the operation I was told that I had been under a long time because the damage done to my pelvic & abdominal cavity by the peritionitis has made the operation a lot more complected. Adhesions* left behind from my peritonitis and surgery as a teenager had attached themselves to pretty much everything in my abdominal cavity as well as damaging my bowel and leaving me infertile by damaging my remaining fallopian tube beyond repair. Because my bowel appeared to be being choked my all a couple of adhesions the doctors decided to remove all of the adhesions whilst they were in there.
Afterwards I had some pain in my abdomen, it was weirdly tingly at times but otherwise ok for the first 5-6 months after the operation. Then Jan 2009 arrived and the pain sky rocketed I started getting some serious bowel complaints as well as going through periods of not being able to keep any food down and it has (so far) not got better. 
After a lot of investigations the doctors told me the adhesions had grown back worse than they were before, but this time they had damaged nerves when they grew back in creating areas of extreme hypersensitivity in my pelvic cavity as well as causing my small bowel to continuously obstruct. They won’t operate to remove them because they worry it will cause more adhesions to form and do even more internal damage.

So, how is that disabling?
The hypersensitivity in my pelvis is aggravated when it’s touched/ jolted so now walking any distance causes severe pain, as does bending, carrying and stretching – it’s amazing how many things you use your abdominal muscles to do. It’s also aggravated by the peristalsis in my bowel and little things like my bladder filling and expanding. I spend a lot of my day fighting back tears and yelps in pain. I feel like my abdominal cavity is lined with jagged glass coated in chilli, it tears and burns all day long. My bowel doesn’t work as it should, and because of the pain I can’t control my bladder when it gets full so I need to be in easy reach of a toilet. 
My small bowel twists around all day and gets caught frequently on the adhesions, normally this just constipates me as food can’t pass, but frequently it stops me being able to eat or drink without vomiting. It can also cause extreme pain and every two months or so it gets so bad I end up in A&E screaming uncontrollably being shot up with strong pain killers as the doctors wait to see if it will resolve itself or if it will burst.
It’s not all doom and gloom, I have finally been awarded DLA, my husband helps care for me, I have good loving friends and I’m starting to find ways I can put my mind to good use.

* Adhesions are strands of scar tissue that often form internally after operations & infections as part of the healing process. You can read more here @ wikipedia or here @ the Pelvic Pain Support Network

pseudo-living

After years languishing on LiveJournal I’ve decided to stop hiding behind the safety net of ‘friends-only’ blogging.

I’m on an adventure of sorts right now. Back in 2009 I became disabled and unable to work at the age of 26 and my life suddenly changed. It’s taken me years to even start to come to terms with it all which has been complected by a unrelated mental health condition, Post Traumatic Stress Disorder. I spent along time hoping I’d get better if I just exercised, ate right, persevered with my drugs, was a nicer person but after two years it’s becoming pretty clear it’s not going away anytime soon.

Back in July I decided that enough was enough, it was time to move on and find something I could focus what little spare energy I have into. After some lovely chats with my Alumni careers officer I decided political activism was one area could try in my own small way to make a difference.

I’m just starting to embark on this new path and (hopefully) this blog will hopefully help me chart it.

I imagine it will also serve as somewhere I can vent about living with a chronic disabling condition, mental health issues, feminism, gender, geekery and welfare.

%d bloggers like this: