Friends with benifits

Now this I can safely say this post is not as X rated as its title may suggest, if only I was that lucky!

Recently student support at uni have been working with me to try and sort out a big, but infrequent problem.

Trips and off site activities keep being sprung on me, I am told for example the day before that I am going on a trip at 9am the next morning. Going to new places is very difficult, because if I don't know where I am going I cannot direct Gus and it becomes very difficult to get anywhere, I become more reliant on friends to show me where things are it makes trips that should be incredibly valuable learning experience incredibly stressful. 

So what can be done, well I have tried talking to the faculty and my level one tutor who was less than helpful, the general consensus has been 'its going to happen in life, get over it'.  Which is to an extent true, but when I am working as a full time journalist somewhere nice, I will get funding for support or use my own meticulous planning skills to the maximum avoiding the issue.

So anyway I'm working out the details with uni but it looks like we are going to implement a buddy system, only it can't be called a buddy system, it has to be something like orientation assistant instead. 

Anyway what will this job be, essentially a friend that gets paid!

Now some might say it is a Little worrying that i have to pay someone to be my friend, but the way i see it is that if they are my friend anyway then they are getting paid to help me out like they do already, possibly a slightly odd dynamic but I think its a great idea.

See friends with benefits.

Climbing barriers repeatedly

This year at university has been great, but filled with issues and problems and barriers to my learning.

It is important to mention at this point that there have been some fabulous people, and some committed and brilliant lecturers who never fail to meet my access needs and think of me in every circumstance.

Then there are those people who don't help at all, who for  a time could not possibly produce a large print hand out for me... until of course they were reminded by me of a little something known as The DDA (Disability Discrimination Act). After that shocker people started getting me large print handouts, and copies of power point presentations as they happen so I actually know whats going on. (finally)

That was one major issue resolved for the most part, it took 8 weeks but hey-ho sorted now.

There have however been countless issues.... one after the other in a near constant stream. Every issue is another barrier for me to battle to clime over, wonky legs and all!

Climbing over these barriers and battling to insure that people understand, is quite frankly wearing me down. 

Most of the issues I am facing could be avoided, a little extra planning could go a long way or a little organisation!

The most recent thing that has happened is the start of semester 2, it starts on Monday and I am expecting another bumpy ride at least in the beginning. The time table has completely changed, I have new staff teaching me and new rooms to find. All of this is going to throw up issues,  I am expecting that there will be glitches and I am fine with that.

To try and smooth out issues before they happen I have asked that all my new lecturers see something called a 'faculty form'. Basically the faculty form states what ALL of my disabilities and conditions are, it states what I need in lessons and spells out the basics. 

I would much rather people know that I am disabled before I walk through the door it allows them time to plan there lesson and avoids embarrassment.

Well I emailed the people concerned as a little don't forget to look at my faculty form, I have now received a email, that I was copied into from the faculty office with a word document that I produced at the begging of the year that concerns my visual impairment, I was at the time trying to simplify things purely relating to my VI.

Everyone always forgets my other conditions they may be marginally less significant than my Visual Impairment at this moment in time but that will not always be the case, I would rather people where prepared.

There was no mention of my bone condition (the wonky legs and hyper-mobile joints), the one that makes standing still in the same place for periods of time difficult, makes me wobble and makes stairs tricky.

There was no mention of my mental health, I may be in recovery right now but I am still receiving treatment on my way to being fully well again without medication.

I have come to the conclusion they either don't understand what my faculty form is, or that its filed away somewhere and they can't find it.

I don't get it  the faculty form is the most basic and simple of things all I want is for all my lecturers to see it, surly it s not that difficult.

It may be wearing me down but I will just have to keep climbing over the barriers.

Can I also say a big thanks to all the people out there who have ever tried to remove an access barrier from any ones path, your actions make all the other barriers seem achievable and remind those of us who have to climb the barriers that there are people looking out for them.

Change will happen to ME

It seems strange to be writing about change as I have just changed the layout of this blog, it seems to be creating a little sub theme, but the change I am referring to here is a life change.

It's at this point I need to mention Beth and her blog 'Screw Bronze'; I have been following Beth's blog ever since the start of the Ouch project and she is a truly fantastic example of a human being, if you do nothing else today just pop over to her blog and have a read. Her latest post titled 'Badminton, illness and change' has really hit me and helped me with a change I am getting to grips with right now.

As I am sure readers will be aware I have a bone condition in addition to being VI its that (not so) little thing that everyone ALWAYS forgets about, but trust me I never forget about it!

My condition has always been one that is likely to flare up and deteriorate over time, I have always known this but today I have come to a bit of a milestone.

After walking down The (EFFING) Eiffel Tower and then yesterday (just as things where improving) managing to slip over in the mud I am having a very serious flare up.

My left hip and knee take it in turns to be very painful and I am really struggling to balance.

I have hit the point I always knew would happen, it is time to obtain a walking stick.

This is for me a bit of a big thing, I am possibly being a bit pathetic but now the time has come I am finding it rather difficult.

People will see me and Gus and then a stick I'm worried about what will go through peoples heads, questions they might ask and the reactions of my friends, acquaintances and complete strangers.

Reading Beth's blog has made me realise, its just an adjustment to a new normal for me and everyone else, I have no need to feel self conscious or concerned about peoples perceptions and prejudices.

I am ME; a stunningly beautiful, 20 year old, independent. visually impaired woman who sometimes needs to use a stick to get about and more importantly I will not be ashamed of what I am.

OK its a change for me to think about using a stick, but it will only be a change for so long, and then it will become the norm, nothing will be different.

Paris- Day 3

Day 3 was the last in Paris, my leg did not work to well still, and it hurt; so it was probably a good job it was our last day.

We left the hotel at 9 am and hopped on the coach to head down to Sacra cur - which means sacred heart and is honestly one of the most beautiful places I have ever seen, from the outside. It sits on a hill with steps going up. I would have really liked to see it close up but I did not make it up all the stairs, getting as far up as I did on the hill did give me a really beautiful view of the streets.

I found a shop were I also found the cheapest Coke since I had been in France so I brought 2 and then we headed it off for coffee and I had a very nice expression.

At 12 we got back on the coach and headed back out of Paris, at 8PM we were back at uni.

Changes

Well regular visitors of my blog that can actually see my blog (sorry blindys) will have noticed that today there have been a few changes, changes to the theme, and layout.

I felt it was time to change and wanted both my blogs (don't forget Guiding Gus) to look similar, I was also becoming aware that my blog was not very VI friendly.

With any luck the change of colour scheme and layout will be like a breath of fresh air.

For all those reading this via facebook it doesn't change a thing.

Oh and while I am talking about facebook, apologies to all my FB readers blogger and facebook appear to have gone a little crazy and somewhere in hyperspace it massively messes up the format of my posts, there is nothing I can do so live with it!

Paris- Day 2

Day 2 was CRAZY we did so much in a seriously short space of time!

First off we got up thanks to my mobile phone at 7:15 am, and headed down for breakfast.

Breakfast was interesting, it consisted of croissants French sticks, boiled eggs ham and unidentified cheese that I was too scared to try. I had ham and croissants, the ham was gross, but the croissants where good so all was well.

About 9 ish we headed off to Notre Damme on the coach, the weather was not good but even still the cathedral looked beautiful, but dark VERY dark. I took loads of pictures of the place and the stained glass windows that are beautiful, and its all completely symmetrical, there is so much to say about it, we went on a tour and where told about all the carvings and paintings and the main features of the building it was really really great!

Then we went on a boat trip.... I don't really remember much of it because I fell asleep and couldn't actually work out which way to look and when I did couldn't see it anyway! Nothing personal Paris I just don't like boat trips!

Then we went to a museum of cinema... which was good but dark and a bit boring, and I didn't like that they had a Video playing showing various animals being dropped from a great height to see how they landed and IF they got back up!

We then went outside and checked out the very random GIANT Mexican man outside the museum.

We then went to the nearest metro station and went shopping, we where let lose and went in search of much needed food. We found the most gross looking kebab shop the world has ever seen and are very lucky not to have food poisoning.

Then we headed back on the metro to go to The Eiffel tower. We arrived slightly late because of the train and headed over to security.

For the first time EVER I managed to get through the security metal detector thing without setting it off, I'm so proud of myself.

We then went up The Eiffel tower, I am scared of heights but have been up the Berlin TV tower and the London eye and been fine with it so I thought I would be OK.

However when we got on the first level high up I decided I was not fine with it! I stood holding on to the metal thing and did not go anywhere near the edge!

I was terrified but still wanted to go to the top so I could say I had done it, so I headed up in the lift with everyone else, all the way to the top, I quickly decided to wait inside slightly lower down and hang on to a handrail and wait for everyone to come down. we then meandered for a bit and went down the first lift.

We then went and joined the cue for the second lift that takes you from there  all the way to ground level.

It broke.

I had to walk down The (EFFING) Eiffel tower, in the dark, with my lack of balance, non existent night vision and vertigo. All rounded off by a strong wind. 

I was terrified and inside my head completely unsure whether I would actually make it down, my bone condition makes going down stairs physically very difficult and often painful so I tend to avoid where possible. There where also thoughts of falling down ALL the stairs to my painful twisted death.

I was shaking all over which did not help my balance every now and then we hit a dark patch where there was absolutely no light meaning I could not see the steps at all, we would then turn a corner and the lights would all be shining in my face, it was incredibly difficult.

At this point I need to commend Tom C for being a complete hero/star/generally fab and staying with me, being incredibly patient and keeping me calm. I seriously could not have done it on my own, and Tom was really calm!

Tom You are Great!

At the half way ish stage we bumped into Paul who found me a seat to sit on, I think by this point I was rather white and I know from my perspective that I was shaking all over very violently and that the world was spinning.

The second half of the journey down was bad, there where occasional spiral stairs and the lighting situation got even worse, my world continued to spin and I ended up clinging on to both the handrail and Paul.

Then what seemed like hours later I made it down, and sat down on a concrete cube for a few moments to recover.... and got several hugs. 

The rest of the group headed up to the restaurant I think I may have been a little short with someone who asked me if I was OK, I wasn't and thought it was a stupid question, I'm sorry to this person! I also remember that someone called my Jemma Brown MBE but I can't remember who or why? Its all a bit a blur and if anyone can fill me in feel free!

Then Tom me and a few of the Lecturers who I think where a bit worried I was going to pass out headed to the restaurant. 

I was still shaking and my left leg was strangely numb, or shaking, or painful I am not really sure which and I very nearly fell over as a result.

Again in leaps Super Tom who let me hang on to dear life to his shoulder while I staggered to the restaurant.

I was still feeling rather nauseous and spinning by the time I got there sat down and ordered spag bol.

We then headed back to the hotel on the metro, again Super Tom's shoulder came in very handy as I could not really walk very well, oh and going on the metro meant going up and down more stairs, which gave me more vertigo.

I was a wobbly wreck by the time I got back to the hotel so simply headed off to bed.

Paris- Day 1

Well I am back from Paris and I am alive -those will probably be the most interesting part of this post but I wanted to divide the trip up into individual days, so for the really interesting bits check in for day 2 when I write it!

Day 1 was the day of travel basically we spent most of it on the coach and then went off to the louvre to try and find food and see the art.

We where on the coach for hours and the euro tunnel train for ages which was boring  I was listening to an excellent book and then shock of shocks my headphones broke! I wold seriously recommend Dawn French's book of memoirs named Dear Fatty!

We left the hotel in the dark and travelled on the Metro which is the French equivalent tot the underground

We didn't have to long in the louvre as we got there about 1 hour before closing and they start to empty the place  30 minutes before that.

I just had enough time to do the recording I did for my radio piece, and then go in search of food.

The only food I managed to find was a Star bucks and that had sold out of everything pretty much, so it was an apple muffin for dinner.

I did my radio piece and unfortunately I don't think it worked to well as my headphones broke, and at some point I must have knocked the input level dial so a lot of it has distorted. I have not listened to it in full yet but it does not sound good!

Difficulties

It's not been the easiest of weeks back and first off I should explain why I have not yet posted about the models of disability as I promised a few weeks back via the joy that is Facebook!

I had 2 big deadlines on Monday of this week so the majority of my time has been spent on that, I have started the post on the models of disability, but as it is a complex topic with many areas of debate I wish to make sure what I do upload is balanced and honest yet informed so I shall not be rushing it!

So far this week has not been a particularly good one, on Saturday (as many people will already know) my toaster blew up, which is devastating, being the independent woman that I am I got my mum to buy me a new one and she is bringing it down on Thursday!

Then literally minutes later my computer mouse stopped working, its fine again now but it was very frustrating! (and rather random)

I also feel the need to portray that I am sitting here writing this at 1AM because there is a drip on my roof, dripping more than once a second and making a great deal of noise, I would really love to be asleep, but its constant and very irritating; aside from that there seems to be an incredibly large number of drunk people about which is not helping matters. I start work at 9AM this morning I don't think I will get much sleep.

I don't like writing to much about my course but I feel I have to, of late things have not been going to well, actually there have been a lot of glitches regarding my inclusion.

The university is very inclusive as an organisation, and does a very good job of promoting diversity and inclusion. It is now not only the place where I study but my employer, which I think says a lot about the place.

So far the inclusion on the course itself has not been great, I think unfortunately this is down to peoples attitudes, lack of consideration and the general disorganisation of the faculty I am in.

There have been countless problems, It took me pointing out to a lecturer that he was in breach of the DDA (disability discrimination act) meaning I was within my right to take legal action for him to produce a large print handout, I should not have to do that, it should not take 6 weeks of me repeatedly telling everyone and then me losing my temper to get is sorted out.

There have been numerous issues over course content, I have had to endure attempting to create a visual design scrapbook which is as inaccessible to a visually impaired person as its name suggests. 

I have sat in lessons for 2 hours doing nothing because I cannot use the video editing software that is used, it would have been a better use of time to sit at home doing work instead of sitting in a room with no alternative given and simply being told we would be working in groups so I would not need to edit.

I had a trip to court on Monday, which I was told about on Friday not giving me enough time to book note taking assistance, leaving me incredibly venerable, anxious and generally like a confidence sieve.

I, and my needs have been forgotten on countless occasions.

We are in the last week of semester 1 and have just come back from the christmas break but already I have had issues, and the member of staff I booked a meeting with was less than supportive, I seriously wanted to cry (and very nearly did).

I am not indestructible things do get to me, I do get warn down by the continuous flow of issues and right now If you cannot already tell by the tone of this latest blog entry I am not happy.

I am fed up of speaking out alone about these issues-others witness but do not act, I am fed up of the lack of understanding or even the lack of willingness to understand.

I have had enough!

Review of 2009 > Hopes for 2009

It's 2009  so I wanted to wish all readers a happy new year and wish you all a happy, healthy year filled with great stuff!

I also thought I should write some kind of reflection on 2008 and my hopes for 2009, so here it goes.

2008 started with a new relationship, which at the time was fantastic, however 6 months later it became very apparent that it was wrong for both of us to continue how we where, we where in hindsight simply too different; that was the end of that. At the time devastating but now it was the right thing to happen.

The first half of the year was pretty mundane, I was ticking over at college, with a unconditional offer I didn't NEED to be there, naturally motivation to continue diminished, leaving me running at tick over, putting in lots of effort was pointless.

Of course lets not forget that for the first half of the year I was in the deep, darkness of major depression trying to find an anti-depressant that worked for me and wondering if I would ever be the same person again. I went on some horrible meds in this time that made me ill or seemed to improve my condition for a few weeks and then caused me to drop back down with a big bump, I remained on the end of a very long waiting list for further treatment on the NHS, and felt rubbish!  

Eventually my fantastic (now former) GP got me on the right medication for me, everyone is different and it takes time to find these things, but things started to look up.

Then in May I got a phone call that has completely changed my life,  a call form Guide Dogs to say they thought they had a match for me, the match of course being Gus who you will all know the story of.

At the end of June, begging of July Gus and I trained and my life changed hugely for the better, he really is guide dog of the year material!

Not only did this mark the start of me and my boy it marked the end of college and time to start preparing for the move to university, big but positive changes where afoot.

September saw the start of university which is fantastic, breaking news day which was utterly terrifying but probably good, and meeting all the new people. Gus and I continue to have a fantastic time at univeristy, I think Gus sometimes wishes there where more dogs at university to play with but over all he loves it.

( HAPPY NEW YEAR TO ALL MY NEW UNI BUDDIES!! see you Monday.)

Sadly 2008 also saw the end of my guest blogging for Ouch! I hope to be able to do more stuff with the team in the future but for now I am incredibly thankful for the opportunities they gave me as a teenager with no idea what to do with there life they helped me to find my path and follow it!

So what about 2009? 

I have many hopes for the year, my first of which is to try and be less of a complete wuss, I need to have more confidence in my writing ability, not something that can be done over night by anymeans but a year should be a start.

I hope to be off my anti-depressants by the end of 2009, I am now in recovery but the medication I am on is rather a high dose and highly addictive, so this is more of a challenge than it may seem to some, I am determined to get there and hope that 2009 will see me in a true state of recovery!

I hope Gus has a healthier new year, that is accident free and good for him.

I all ready have a lot of things planned for the new year, lots of which you will probably hear about here first so I would also like to take a moment to thank you all for reading this crap!