i knew a woman had been attacked but I had no idea it was so serious
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?
I was bored and had to take Gus to the vet last week, the video is not interesting but has some interesting naturally occurring cinematic’s! Also as it was shot in the dark with no additional lighting I think it gives views an idea of what I can see… although I can probably see a bit les than how it came out!
It’s official on Tuesday I visited the eye unit and had my second injection of a drug called Avastin.
The aim of this needle poking is to make some blood vessels at the back of my eye that should not be there wither and die! It’s these tiny blood vessels that cause hemorrhages that damage my Macular that then lead to vision loss.
The process of being injected involves having lots of rather stingy local anesthetic eye drops placed in you offending eye. Then the whole area is cleaned with orange surgical grade antiseptic including the eye-ball. Then more this time slightly less stingy anesthetic eye drops. It’s at this point things get interesting a clip is then applied to hold both the upper and lower eye lids open, this is not to fun and I did feel some discomfort all the way along with the clip on my eye this time. The big guns then come out local anesthetic is then injected underneath the cornea in the area around where the injection is going to go, this also stings a bit. Finally it is time for the final and biggest needle yet the one containing the Avastin. The only way this can really be described is its like someone poking you in the eye with a needle the initial area where it goes in is numb but as soon as it pierces the white area of the eye it hurts.
Upon leaving the hospital I was given the advice that my eye would probably hurt later and that I would probably need to take some painkillers inside my head I was thinking actually I need some right now!
Tuesday and Wednesday my pain was on and off pretty bad its like someone has punched you hard in the eyeball alone, in effect your eye is bruised. I will say this time I looked less like something from a horror movie as my eye did not go blood-red.
Well readers as you may well be aware I have, simply for ease of understanding labeled myself as a blindie for some time. When you refer to yourself as a blinky most people of a certain age think you are talking about a cartoon koala bear not describing your visual impairment as partially sighted. So blindie has worked to convey that sense of hey I’m visually impaired it’s not a taboo subject and I am comfortable to talk and even joke about it.
I have been partially sighted since the day I was born, well I was actually born with very little sight at all but after some fantastic surgeons working there magic on my tiny peepers all I have ever known is partially sighted.
Growing up it has been drummed into me, quite rightly by various medical professionals, my parents, teachers and sometimes even friends that I have to be careful about a bang on the head. This is because if I sustain a serious blow to the head I am at a higher risk than your average human being of detaching a retina at the back of either eye or worst case scenario both!
I never expected anything more than this, I am a realist and I am grateful for what I have. I also never really expected anything less for most of my life I thought everything was going to stay stable and be the same for ever. Oh how naive I was!
Last Monday I went for my appointment after I had the hemorrhage a few weeks ago. The very nice consultant, who incidentally reads my blog here (hello Mr N) confirmed that I have had a bleed and the general state of my eyes, especially the right one is not good.
We decided together that I could now be registered blind, before that moment I was partially sighted the way I had always been growing up and suddenly I had the new label of a blind person.
The thing is the more I think about it the more I realise that it is just a label but this is very difficult to comprehend.
A tiny part of me is devastated which I think is only natural but in reality the change of terms means almost nothing. I have not changed as a person my life is not going to change much if at all with this new label but it feels very strange.
I guess to sum up everything quite simply its a blow and a shock but it could be worse and it’s not the end of the world.
Positives will come out of it, I have the joy now as a person registered as blind to a half price TV license so one day when I have enough space and money to buy a TV I can look forward to paying less license fee!
On Sunday I had been back from Church say about 30 minutes when I noticed what is affectionately known in the eye business as a floater.
For me given my previous Sub-Macular hemorrhage this rings alarm bells in my brain.
After a brief spell of panick and trying to work out what to do with myself I rang ahead to Eye Casualty to let them know I was going to head in.
One £10 Taxi fair later I was stood outside Southampton’s Eye Casualty but was totally unable to go in. Not because of some anxiety driven panic that froze me to the spot but because there was a keypad with lots and lots of buttons and a small intercom with yet more buttons on it just above. There was also a very small water damaged sign that I presume said something important but I honestly have no idea. So there was only really one thing for it, I stood there and pressed buttons totally randomly and hoped for the best… This was far from successful and after some time had elapsed I pounced on a woman walking past and asked her to help.
When I got in I announced my presence to the nurse booking in patients and composed myself. This is necessary because the Eye Unit complete with Eye Casualty can be a stress full and incredibly dull place.
Regrettably I went alone, just myself and Gus. I could have really done with someone to come with me but also did not want to worry my parents or friends on the odd chance that it was absolutely nothing to worry about. Not to mention the inconvenience to my friends if I rang and asked them to come down – I realise now this was totally stupid but it’s how I felt at the time and I guess I was simply in denial!
After some time the tests commenced: Distance vision test, blood pressure, blood sugar, pupil reaction, intraocular pressure (IOP) and ultrasound. I was rather intrigued by the ultrasound scan, I had never had one of those before and did not know it was even possible to scan an eye, but it is.
By this point I knew what it was and was simply waiting to hear it from the doctor.
Several doses of pupil dilating eye drops and 20 minutes of waiting for something to happen to my pupils. The doctor was able to get a semi-decent view of the back of my eye and confirmed a new haemorrhage in the back of my eye.
This is obviously pretty devastating, its means further deterioration and uncertainty. There has already been damage done to my vision by this bleed and I am left to wait to see what happens.
So all this happened on Sunday and I was been told if I have not heard anything within 2 weeks to give them a call and chase things up. Considering the state of the administration at Southampton Eye Unit and the problems I have had with appointments previously I don’t hold out much hope so have already phoned my Consultants secretary to chase this up.
I am yet to see or even hear from a consultant about this, so I am left in total limbo with no idea what is going on. I have no prognosis for this bleed, no idea whether I will again be able to have off label treatment with Avastin and even more worryingly no idea if the blood vessel at fault is going to leak more whilst I am left to wait.
I am incredibly thankful to the guys at the Solent CU and Church that have already prayed for my recovery. If you are so inclined and have the time please send out a little prayer for me.
- The Previous haemorrhage can be found in the following posts (In order of appearance)
- Today’s visit to The Eye Unit
- Eye Casualty
- The Consultant Calls
- I am going to fight
- No Pretending
- The effect of it all
- I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!
- Avastin is go!
- When they said ASAP they meant it
- My day on the ward
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 have not quit blogging, died or had some terrible accident that has resulted in the lack of posting – I have just been very busy.
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!
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!
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!
I had to write about this purely because I have had a very bad experience or two.
For example I once received an eye appointment for the same day at two o’clock, three o’clock and four o’clock they all arrived in the post on the same day in three separate envelopes, I had to phone up to try and establish what the hell was going on.
Another time I got sent an appointment at 9 am on a Saturday morning and another one for the Tuesday only a few days later both in the same envelope, I phoned (again) to check this was correct and was told that yes it was right. I turned up on the Saturday and know one could quite work out why I was there, my consultant was not even in and the doctor actually apologised for the ‘error’ even though it was not her fault!
Then there is the local podiatry service who ring me up less than 30 minutes before my appointment to cancel it, when I am already sat on the bus on my way, they have done this twice now.
Oh and then there is the time said podiatry administrator rang me when I was in town to tell me about a change in my appointment, with bags of food shopping, heavy rucksack, guide dog, wearing my non-prescription sunglasses and balancing the phone on my shoulder. She babbled possible appoinment times at me I said I did not have my diary out or a pen so I did not know when I was free and could not write it down. She said I had to pick one,I said any.
She read the time and day out again and I said could you email me that please, she said no.
I asked if she could send me a letter in large print, she said no.
I asked if I could have a letter in standard print, she said no.
I asked if she could phone me back in 30 minutes she said no.
I asked if she could phone me back straight away and leave me a voice mail with the info, she said no, (abruptly).
I pointed out once again that I could not write it down, due to the fact that in those moments stood there in the sun I was blind, she said I should write it down told me when it was one more time and hung up!
Unfortunately this is just a brief outline of the experiences I have had in Southampton when trying to sort out hospital/doctors appointments, I have spent over a year attempting to get my appointments from the eye unit sent to me in large print without success, it’s the EYE UNIT!
Don’t get me wrong I think the NHS is great heck I get enough out of it, but my point is that it is no wonder people miss appoinmtnents with administration systems like the ones near me!