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
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!
Since my right eye deteriorated so suddenly I have been solely reliant on my left eye for every single day to day task, from reading large print resources to putting on make up one eye must to the job of two.
As a result I am getting more eye strain than ever before which tends to make life a little tricky, hopefully over time my eyes and brain will adjust to the way things are now but there is know way of knowing when or if that will completely happen.
As a result my university lecturers have strongly advised me to learn braille and they are not just saying this out of the blue, they have been doing there research and have spoken to several blind journalists who have all have stated the importance of braille for VI journalists and have declared that it is a crutial must have skill.
The issue of course is that I have absolutely no experience of learning braille and will have to learn it from scratch, something that I know will be very difficult considering how late I will be starting to learn.
In addition I can’t afford the price of even a basic Brailler something that is quite essential in order to learn how to write braille, I have been trawling the web already trying to find a cheap model or a second hand one but have so far come back with nothing. if anyone thinks they may be able to help with this please get in touch!
I also have to find a Braille tutor to teach me, I have absolutely no idea on where to start looking or who is going to pay for the lessons as cost is going to be a serious issue even if I do get a part-time job.
I really do see the possible benefits one thing I have learnt through the whole process of my right eye deteriorating is that nothing is guaranteed and all though it is a cliché nothing should be taken for granted. With this in mind I defiantly need to start learning Braille so I guess I will keep you posted.
Good evening to you all dear readers, I am forever thankful that you actually look at this stuff and at least some of you apparently like it and come to visit time and time again!
I am however about to beg… In September I am going to be rescued from drowning by a Newfoundland dog.
I’m hoping I won’t actually be drowning but saying that I have not been swimming in a long time, anyway I digress, I am after sponsorship for this event to raise money for The Guide Dogs For The Blind Association (UK).
As you should by now be aware I benefit from having a Guide Dog (Gus) so this is a charity very close to my heart. Having Gus has boosted my confidence and made me so much more independent, we go everywhere together and are very rarely apart. There are also the benefits that Gus is my companion, I am never alone because he is always their, at hospital appointments, at uni, at Guide Meetings, at cricket… The list would be endless.
Please help me to raise money to insure that Guide Dogs can continue there vital work for years to come.
Click on the button on the right to sponsor me or visit http://tiny.cc/kXB8M