Fragility

I’ve become aware over the last few months just how fragile the human body is and what a God given miracle it is that the majority of people have a fully working body – it may have its individual quirks but generally speaking works ok. Everything from the cells in our liver to the way the ball and socket joints in our shoulders and hips fit together was so perfectly created by God our creator.

Increasingly mine doesn’t work how it should, and of late its been hard to accept this and deal with the frustrations it causes.

Aside from being a bit blind I’ve got hypermobility syndrome it affects the connective tissue in my body it means my joints are very loose, I’m very double jointed. My joints are under significantly more strain than your average joints, they less stable  and more prone to dislocation and injury. As a quirk it also makes LA less effective so for recent surgery i had to have 5x the normal amount injected into me!

Since the beginning of june I’ve sprained my ankle (for the millionth time), I had just got back on my feet after that and then I developed sciatica and had crippling nerve pain in my leg and then I’ve spent the last 3 weeks in constant pain every day with some kind of back/neck/shoulder problem.

Its all brought to my attention just how fragile the human body is – particularly mine!

Most recently I’ve had knee problems I injured my medial cruciate ligament back in December, we are now well into <arch and although my MCL is feeling a lot better I injured the burser just as it was starting to improve. The result I’m in pain every day at the moment some days are better than others but I’m very limited as to what I can do physically. I can’t even run for a bus let alone play football or cricket, I can’t handle uneven pavements or stairs but I’m thankful every day that I’m not on crutches and I’m able to walk.

I’m not going to lie there have been times over the last few months when I have really thought ‘God why’? Its a totally human reaction to living in pain and suffering. The way I think of it is simply this: Nothing bad (pain) comes from God on top of this we re all born in the image of God and are perfect in his eyes regardless of what physical or psychological disability we are born with. God also has a purpose for all this as he has a perfect plan for my life – for example my recent knee injury has seen me start wheelchair basketball and its been fantastic I plan to continue playing when/if my knee recovers. It has been a totally liberating experience!

The other thing of course is that its quite difficult to explain this to people unlike my blindness people can’t see it, when people look at me they see someone that is 6ft1 that looks strong but in fact my joints are incredibly weak. Someone bumping into me in the street while i was caring a bag of shopping (which wasn’t even very heavy) caused my elbow to pop out of joint and then back in a couple of months ago. I sometimes feel like i need a fluorescent sign above my head warning people that I’m coming, as if a guide dog wasn’t a big enough sign!

I have to make a conscious effort to tell people my limitations and trying to articulate whats wrong with me tends to be quite tricky – I don’t want to moan at people all the time and i think its quite hard for people to imagine what goes on inside my joints even when i do explain.  Like everyone I find it hard to admit to my vulnerabilities so it can be a real challenge.

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Bid to kill #CAPTCHA security test gains momentum

Bid to kill CAPTCHA security test gains momentum

This is great since CAPTCHA’s started popping up blind and visually impaired people have faced huge issues accessing anything online that needs a CAPTCHA. This has lead to people having to ask sighted people for help sometimes having to give out there log in details and other secure information.

Since they were initially launched there have been access improvements – many now have scrambled audio where numbers are spoken alongside what I can only describe as noise. Unfortunately this has not gone far enough the audio versions don’t work on mobile platforms and are often just as unintelligible as there written alternatives.

From the early days of the CAPTCHA there have been viable alternatives and quite frankly it’s about time code writers and designers start using them.

#DWP & #ATOS at it again please read! – #disability #ESA & #ATOS

I just read an article that has hugely saddened me, please keep reading and follow the link to get the full story.

A blind woman has been made seriously physically ill by ATOS and the DWP working in a way that totally disregards the Equality Act.

Having just read the facts of what happened I am so stunned that I really don’t know what to say.

The matter boils down to one of what’s sometimes called a print disability. The term print disability can be used to describe anyone who is unable or would struggle to read standard print. It’s an umbrella term and can be used to describe conditions such as total blindness, dyslexia and intellectual disabilities.

In this case the lady in question uses Braille or audio instead of standard print and ATOS & DWP are unable to produce this.

They then told her that she would have to find someone to fill out the form for her.

The stress of this landed her in hospital.

As I said at the beginning this saddens me you might think that’s a strange reaction, maybe it is but for me it’s personal.

As I’ve mentioned before my mum is almost totally blind her way of dealing with written correspondence is Braille.

My mum requested the same form as the woman in this story in Braille and got the response at the other end of the phone that said ‘I’m not sure if we do Braille but we should I will try and get it for you’.

The form the arrived in standard print with a deadline to have it completed and the threat that missing that deadline will result in loss of benefits.

My mum is lucky she got help from my dad and a local charity but for thousands of other people this is not the case.

I have also had help to fill out the form in question. I’ve also had the stress of trying to get it done in time for the deadline bearing in mind I get one hour of support a week!

Former Archdeacon of Wells, Dick Ackworth, denounces unfair ‘benefits test’ – read why and sign his petition. #ukmh #MentalHealth

My own ‘medical’ was an absolute farce!

My assessor was provided with evidence from all my consultants but still when it came to my visual acuity test I said what I could see and my assessor said ” now try really hard”. As if if I put enough effort in I wouldn’t be blind!

My mum is also going through an ESA appeal as they found her fit for work when she quite clearly isn’t!

These tests cause nothing but stress and are carried out in a way that is often demeaning and causes distress.

They are not fit for purpose.

Day 2 – The Simple Things in Life *

*Or NOT!

Today I am inspired by chatting to someone who has  only in the last 2 years become visually impaired. Meeting a relative newbie at the start of learning to live life independently with a sever visual impairment has made me think of all the little adaptations and things i do in a strange way without even thinking about it.

Take for example making a cup of coffee and carrying it over to your faviourte spot on the sofa to curl up and watch TOWIE (or whatever the latest TV craze is).  How do you get that boiling water from the kettle into the cup? Let alone carry the cup of hot coffee from the kitchen to the sofa around relatives, friends and animals without ending up wearing it?

The bottom line is you don’t I regularly spill boiling water on my hand when I make a hot drink, it does not scold me because by the time i have said a naughty word and waved my hand in the air the water is at a much cooler temperature. On Teaspoon going from jar to cup I always spill coffee and sugar. Not to mention just the other day I tripped over a shoe at a friend’s house and promptly redecorated her hallway with my cup of tea.

My mum rang me earlier today to tell me she had polished her shoes with fly killer instead of shoe polish, you find a can in the cupboard how do you know which one is which? The reality is if it’s not where YOU ALWAYS leave it then mishaps happen. In the past I have been washing my hair and accidentally used sun cream instead of shampoo which is a horrible experience because of the greasy nature of sun cream but it happens.

Yesterday I realised how lucky I am that I don’t have any food allergies, I was buying cake for a friend who does and it suddenly occurred to me that if I had been on my own I would have had no clue which cake would make her ill and which cake would be safe.

Best before dates… Need I really explain?

Think about walking down to your local corner shop, now imagine that with your eyes closed, does the thought of walking to the shop with your yes shut scare you? Then add into the mix all the things you could encounter on your journey; Pedestrians, cyclists, traffic, road works, pot holes, chewing gum, overhead branches, children, birds, wheel bins, lampposts, postboxes… There where some shocking statistics released a few years ago that 8 out of 10 blind people never leave the house alone due to fear and lack of confidence if you couldn’t see where you were going would you make it to work on time?

This is a topic I have written about before I realise both here (You know your a blind person when…) and on the BBC Ouch Website (How to **** in the woods) but the point still remains, things I do every day are different to that of a sighted person, for example right now writing this very post I am not poking at the keyboard or my computer screen, I like to write with my eyes shut and without and screen reader software so its just me and my fingers dancing across the keyboard. I type at my fastest when I  and not looking or listening to anything else and its something I really enjoy having the time to do on occasion. Of course when it comes to proof reading and editing my writing I do look at the screen but then still miss half my typos anyway! Sorry blogosphere your just going to have to put up with me writing utter rubbish that is not grammatically correct!

 

The Insult of Disability

I’m not about to write a ranting raving blog post to you all about how awful it is to be a disabled person – its alright actually and its normal for me and I would not have it any other way!

What I am going to talk about is insulting and offensive words surrounding disability.

Recently I have gone back to being a guide leader after a 3 year absence and I was shocked by the language they used to insult each other, it appears the word ‘retard’ has come back into linguistic fashion as an appropriate insult for your 13-year-old mate.

I had naively hoped that ‘disability insults’ had disappeared from society when the disability rights movement moved out discrimination and in the Disability Discrimination Act (2004). I assumed that it was no longer socially acceptable to use an offensive slang term for a person with a disability as an insult – I am wrong.

It’s really got me thinking about language and its development and progress though usage in society, I have attempted to think back a decade and assess the disability related insults that were used in my school.

I have many unpleasant memories about my education; of bullying, harassment and verbal abuse. Although I was called a lot of nasty things at various points by people so insecure about themselves that they had to pick on someone to feel good (I REALLY pity them) I really don’t think any of the words used where on a par with ‘retard’.

I could be wrong but I think young people in my generation understood (even if they did not actually realise it) the history behind such words and that the use of them was socially unacceptable.

So I find myself challenging todays generation about their language and the way they insult each other and wondering what I can suggest they use that isn’t the dreaded ‘R’ word?

I also wonder what other offensive terms for disabled people will once again rear their ugly heads as playground insults; mong? spaz? cripple… I’m sure the list could be endless – Which I think says a lot about our society on the whole.

In the current economic climate I think its fair to say the DDA is not being enforced as much as it should be, money is getting in the way and proving yet another barrier to the access needs of disabled people, of which many argue that the DDA never went far enough to change the way society views disability.

I know form my own experience that discrimination against disabled people is still rife I currently feel that Southampton City Council have acted in a discriminatory manner towards me and continue to do so. What will be done about it or change it? Nothing unless at some point I can secure funding for a case under the DDA (something I admittedly have not looked into yet).

With the many cuts and changes to the benefit system effecting disabled people, in addition to negative news stories focused on how disabled people are apparently a drain on society and can contribute nothing to the wider world is it any wonder that our kids are turning to disability to get there insults?

Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

I’m Still Here

I have not quit blogging, died or had some terrible accident that has resulted in the lack of posting – I have just been very busy.

A woman with a white guide dog sat on her left

Mum and Tara

University is as hectic as ever, things still fail to run smoothly it seems like the rest of my formal education at university is going to be an uphill struggle against inaccessibility, primitive attitudes towards inclusion and a complete lack of organisation that runs through the place. In short its not going to well, is very stressful but also interesting/fun.

Whilst on the subject of education I did not escape the funding crisis of the student loans failings. Admittedly I applied late but I am still to reciee my student loan. There have been multiple phone calls to my LEA (Local Education Authority) and I am assured it will al be sorted within 6 weeks. Here’s hoping I get some money soon it has been a seriously living on the breadline.

A lot has happened since my last post here, my eye condtion has stableised which was a nice surpise, I never really know how long that will last but its  a bit of a relief.

I now confess to having a bit of a caffeine addiction. I have discovered the wonder that is an expresso and its good! I love a good coffee more than I ever have before. Redbull and other highly caffeinated drinks have got me through some seriously dull lectures and for this I am thankful.

My mum’s Guide Dog Ian has retired and she has trained with a new guide dog called Tara. So now as I am home for Christmas we are a 3 dog household which is a bit of a shock to the system for all of us dogs included.

I have a job! I work 10 hours a week from home or uni or wherever I am really. I am a community executive for a word of mouth project at uni. I recovered from the train journey to get to the training and the 5 days of basically being stuck at a service station in the middle on nowhere with internet at £5 an hour!

Mark and I

I am in love, for those of you that don’t stalk me on facebook I am now in a relationship with a fantastic guy from the Hampshire VI Cricket team called Mark. He also did the Guide Dogs sponsored event that I roped him into.

Writing of cricket I should also mention that I am now joint player welfare officer for Hampshire VICC. I am sharing the position at the moment because I have to do a few courses in child protection before I can officially take on  the role but it’s still great stuff.

This first term at uni I have also found faith in the man upstairs, I go to the christian Union at uni most weeks and also go to Life Church Southampton. The CU guys are a fantastic bunch and very kindly brought me a large print bible which means the world to me. We also went Ice skating together Just before christmas I can’ ice skate but went along anyway and it was a great evening dispite it being really cold!

Heres a few of us in Winchester, I’m not quite sure who took the photo, if I was I would attribute it but hey ho, it’s originally from facebook in the public doman so please don’t sue me people!

A Group of people

CU and Friends Iceskating 09

Train Travel floored

I write this sat in a hotel connected to a garage in the middle of nowhere the hotel has wifi but charges a whopping £5 for one hours access – which I refuse to pay.I am in the middle of nowhere a £8 taxi journey away from Didcot train station, I am here unpaid on a course for the job I am doing at university this year.

To get here I got a volunteer to drive me to Fareham station where I met a support worker and got on a train to Southampton from there we got on another train headed for Oxford, we had to get off at Reading station and change trains again to get to Didcot.

All was going well until we reached our second train, upon boarding it became apparent that the train was hideously in accessible. We asked where the wheelchair area was assuming there would be more space, on getting there we discovered that it was literally an empty space with a small table off to one side.

The train was rather busy and full of older people, who where insistent on sitting down first and finding there reserved sears.

This created a battle field incorporating train staff, my support worker, me Gus and a million grumpy old farts that where fully prepared to pushed there way forward not caring who they ran over with there suitcases or stepped on.

My support worker put her bag down on a chair closest to the wheelchair bay only to turn around and discover a woman had picked it  up and was about to move it somewhere else. There was carnage in the carriage, people and bags everywhere refusing to move to let other people past because there booked seat was that way and they wanted to sit in it now.

The train was delayed by 6 minutes whilst the gridlock continued with train staff and other passengers shouting at large amounts of old farts to move out of the way and let other people such as myself past.

Eventually after much shuffling and complete disregard to other people the large groups of old farts sat down.

Then I discovered that the wheelchair seat had no seats around it, basically there would be space for Gus but not for me. None of the seats around it had any room for Gus to lay under them so what was I supposed to do?

In the end I sat in the wheelchair space on the floor for over an hour and a half, I spent this time having poor Gus being stepped on even after I had warned people that he was there, I was also stepped on, people tried to block us both into the space with bags and even tried to wheel them on top of us.

I remain utterly disgusted by this, I was basically a piece of luggage, one particular old fart of a commuter stepped on Gus  after I had already warned her that he was there, I pointed this out to her and then she patted me on the head and apologised, I was fuming!

Then the guard came through the train and I asked him a question he turned around and answered talking to my support worker instead of to me, referring to me as she and stating that they have special assistance “for people like her”.

I snapped I told him to talk to me not about me I was on the verge of rude but I had had enough by that point.

I have never had a train journey that bad, I am honestly appalled by it I have heard horror stories from other disabled people that have had horrific train journeys, but I have always felt positive about travel by train and enjoyed it as a largely stress free experiences, but now the tables have turned, my journey was utterly horrific thanks to the train company for not training its staff as to how to talk to disabled people, not making there trains accessible and the other passengers being horrible old farts who only cared about themselves with no consideration for others – I hate people that are so selfish!