Tag: Disability

To Just Move

I love movement. I always have done. In fact here is a video of me as a sproggling jumping around a climbing frame…

But movement became difficult a few years after this video. I lost a lot of sight and suddenly I needed help in the natural art of moving. Canes, dogs, guides- you get the message. Suddenly I had lost the ability to ‘wander’, I had to go with purpose everywhere. Step counting, road negotiating and mentally tracking my position like they do with tigers on the telly. I can’t just rollerblade, jump and run wherever I want.

In January I experienced my first session with touchdown dance. They are a group which specialise in dance for visually impaired people. On saturday I went to my second session. The dancing is not stereotypical, there are no routines or positions. You just loosen up and move. Whether it is moving with each other or with objects- it is free. The event was organised by LOOK, a charity which have done an awful lot for me in the middle stages between being a sighted sproggling and where I am now. They were the first charity I came across and J and V (those holding flowers) have always been there for me. They are truly amazing people who are going on to new adventures away from the charity. They will be strongly missed, but it’s their time to fly!

A group of people and guide dogs smiling

Noodle the guide dog is also getting ready to fly, she has just had her rabies vaccination to get her passport. Then she is all set to come on any adventures I may find this summer! She sulked at first but I think she is slowly coming round. She’s busy on her iBone. Did I mention she has a facebook page?

And one final word on movement, my phenomenal other half passed her driving test today- first time. I am very proud and she is slightly shell shocked!

I hope you are having a good week!

Diagnosis- The End of Carrying the Blank Label

I have been thinking about our attitudes towards a certain topic quite a lot recently.

Diagnosis.

It is somewhat an anvil of a word isn’t it? It brings to mind dramatic scenes from soap operas and the clutching of Kleenex. We see diagnosis as bad news because it is the indicator that something is wrong. As a minor detour lets look at ‘wrong’:

wrong (rông, rŏng)

adj.

1. Not in conformity with fact or truth; incorrect or erroneous.

2.

a. Contrary to conscience, morality, or law; immoral or wicked.
b. Unfair; unjust.
3. Not required, intended, or wanted: took a wrong turn.
4. Not fitting or suitable; inappropriate or improper: said the wrong thing.
5. Not in accord with established usage, method, or procedure: the wrong way to shuck clams.
6. Not functioning properly; out of order.

7. Unacceptable or undesirable according to social convention.

People have clearly put a lot of thought into this word, and what it means. However I personally think wrong itself is wrong and that humanity established that there is no such thing as ‘simply wrong’ a long time ago. Even for things which 99.99% of the population are adamant about, the 0.01% still has an opinion. It is still right for the remaining few. Plus if anything was truly wrong wouldn’t it just fail to exist? There must be a grain of right in every wrong. When people go to the doctors we should ask if they are okay- not “What’s wrong?”.

Which brings me back to the topic of this post. When people go to the doctors because there is something amiss they go to find out what the problem is, and thus what they can do to sort it out. Of course some will receive a devastating diagnosis, medical verdicts I can’t even imagine having to receive. Ones with time labels, with words like ‘progressive’ and ‘palliative’ attached. For these people diagnosis is often not a good thing, it is a realisation of a horrible truth which some might well prefer not to know.

Hayley Cropper (Coronation Street) Recieveing Diagnosis

However imagine having an ailment which no one can attempt to fix, because they don’t know what it is for definite. Imagine ticking some boxes for one condition, some for another and falling into the canyon in between. You have a ‘hum’. Something which requires occasional mentioning for practicality’s sake, but yet has no name. Perhaps doctors don’t listen, family don’t understand. But you are not wrong. You are just experiencing something different to the people who you cross paths with on the way to the shops, sit next to in waiting rooms and work alongside at work/school. Being different isn’t a bad thing as long as you are comfortable and accepting of your difference. Plus there will be at least one person somewhere who is going through or has gone through the same physiological battles as you.

Lack of diagnosis is something which many people encounter. It is a day to day struggle to describe something which doesn’t have a name. Having nowhere to direct people to for more information and no support networks you can fully identify with. This is a problem across the board-  for those with mental health problems, long term illnesses and disabilities. It seems you can’t get help until you get a label.

We see labels as bad things, when in reality we all have them hanging off us day and night. Some are positive and some are negative. At summer school last year one of the most emotional experiences I had was when we all rotated around the room writing labels for each other and then sticking them onto the intended person. When it came to reading the stickers people had given us there were hardly any dry eyes in the room. Seeing good labels; positive affirmations and compliments makes you feel good. If you ever get a bad label (which in this example at a Christian summer camp was unlikely) at least you can see it. You can make efforts to change, rub out the pencil scrawls and replace it with something positive. But what about a blank label? What can you do with a blank label? It will always be there but no one knows what it is, you know how it feels to have it stuck to you but you can’t give it a name. No explanations just thoughts.

A rough self portrait drawing of me (a teenage girl with short hair) with a blank label tied around her wrist and foot.

I have never cried out of sadness when I have received a diagnosis. I have been lucky that none of them have been life changing, they only added some clarity to what I already knew. They came after a long time of searching, upset and confusion. Once the blank label had been written on I knew what the hum was. No more scary guesses, just answers. Especially in the case of mental health, where a condition can make you think or do things which you disagree with, it brings solace to know it is not your personality causing it. It is a disorder or illness. In the case of my OCD the original lack of medical intervention riled the guilt and self-doubt which is integral to the condition. I had been told I was ‘just a teenager’ too many times, and was digging myself into a rut. However after a referral from a different doctor and talking through my ‘quirks’ for an hour in a room of many chairs, I was given diagnoses. I cried with relief because someone believed me. Someone else saw this hum as a problem. The story is similar with my sight loss, years of searching lumbered with a blank label, concluded with a medic wielding a metaphorical sharpie- writing the name, and with it engraving hope for my future living with this condition. Diagnosis is day 0: from then on you know what ball game you are playing and how in the long term you can win the tournament.

To everyone holding a blank label:

Don’t give up. I don’t have the sharpie and the knowledge that you need, but I will certainly write ‘hope’ on the back of your hands. Don’t let the label choke you, wear it on a bracelet. Then hopefully one day you will find you are wearing it less and less.

my book of labels from summer school

Inspector ‘Poireau’ Saves the Day…

Day Four in Lyon:

Straight after breakfast we went into an English language lesson inside the secondary school. These were older children doing an English listening activity. I found it hard not to laugh because the audio was something which you could imagine being on Radio 4. All the characters had impeccable English accents and had stereotypically British names like ‘Poppy’ and ‘Luke’. It surprised me that some of the words in the activity were unusualy complex- such as lawnmower. It reminded me of studying French before my GCSE and learning unusual words in the lessons that I could never imagine being useful. But who knows, perhaps one of the French pupils will become a horticulturalist and move to the UK.

A classroom poster explaining english negatives

Next we had a session booked to practice our speaking exams. The English students had topics to try out on us and we had ones for them. I was in this session with my friend C who is studying A2 French. We both found the session very difficult because we weren’t clear on what the French students were saying to us. Worry quickly set in as we realised that we would be doing this exam in a weeks time and we were nowhere near ready. Though the students were lovely I felt rather put back on the confidence scale because they didn’t seem to understand what I was saying and I didn’t understand them either. Myself and C did however help them on their topic of Margaret Thatcher because we both have very opposing views.

My language flunk continued into the next session which was ‘Torball’- the French equivalent of goalball for VI people. I was really wanting to get the flow back that I had the day before but every time I tried to speak French to someone they told me they could speak English. I had a go at the sport and I was lucky because no balls came my way. England won 3 – 0, literally beating them at their own game.

J, K and P playing Torball

I don’t think I have ever said the phrase “I was saved by a leek” before. But today it certainly applied. We were doing a sensory activity with the pupils studying gardening and landscaping. This involved wearing a blindfold and trying to identify different smells, tastes, textures and sounds. I was shown around the activity by a lady who didn’t speak much English, she was very friendly though and laughed at my extreme facial expressions when sniffing the strong smells and touching the odd textures. I was doing my best to tell her what I thought the items were in French but my language ability seemed to be really fluctuating. That is when I was handed a leek. I was surprised because there is nowhere in the Edexcel syllabus which describes it as necessary vocabulary for the AS course- yet I knew it. ‘Poireau’ instantly came up in my mind, accompanied by an image of a leek as an inspector. When I gave my answer of ‘Poireau’ to the lady and she said it was correct it felt like my fears had been lifted. If I know the word for something as bizarre and specific as leek I can’t be that bad at French right?

A hand drawn cartoon of a leek dressed as inspector Poirot

After lunch we went to the Lyon football stadium. It is a huge arena which used to be a velodrome, but a replacement stadium is now in the process of being built because the current one is too small. We saw the VIP boxes and the changing rooms- we even chilled out in the team’s pitch-side chairs! The tour didn’t last long so we went on to do some shopping in a huge mall which appeared to be neither inside nor outside. We only had a short amount of time before we had to go to our meal reservation so we all had to prioritise which shops we wanted to go to. Myself and French teacher C were the only ones who had book shops at the top of our list so we went together to ‘Decitre’ which is a very large book store. There were so many books to admire and I loved finding the French translations of books that are currently popular in the UK. C got herself a very nice copy of Les Misérables which I loved because it was so chunky, and I couldn’t help but get a copy of Wonder by R.J Palacio (a book which isn’t hard to fall in love with). I also got an audiobook called ‘La Mécanique du cŒur’ which nearly every worker in the shop told me is an amazing story.

The group sitting in the team seats

As it was the last night we all went for a meal out in a huge restaurant. It was very grand and had mirrors on the walls making it look even bigger than it already was. French teacher C (after a glass of wine) decided that she would tell us some swear words in French so that we could ‘avoid situations’. Much laughter ensued. A few of us tried snails and most who did liked them, though I couldn’t bring myself to do it.

After coming out of the metero we got a tiny bit lost. We couldn’t work out which way we were supposed to go to get back to CSRP and it was another late night. R ended up running up and down the road (which was quite funny considering he had already had a rather strong rum cake by this point) in order to try and find our turning. We ended up reading one of the large maps which seem to be scattered everywhere in Lyon and eventually we crept back into the internat where we were staying. All the pupils here go to bed with lights out at 10:30pm sharp. I can’t imagine that working at our college for some reason…!

The Monster from Fish and Chip Land Settles In

Day Three in Lyon:

There was a very heavy tiredness over the group. We had all returned home from the family dinner at around midnight the night before and were subsequently hugging our duvets yawning when it was time to get up. For the brave few who managed to move for breakfast it was chocolate brownies, which prompted a discussion as to why the French eat so much at mealtimes but somehow stay slim! On our way out R went to elaborate lengths to sneak some sugar cubes out of the dining room; we were fast running out and didn’t know how to ask for some more in French.

Our group then split to do one of two activities- one group went out on an excursion to a beehive and myself and the others stayed to do some drama. The children in this class were practicing poetry with a visiting workshop leader. They were talking through the many aspects of successful poem recitation including: breath control, stance and intonation. At some points in this session I was the only French speaker so I had to translate for my group. I was really surprised at how much I could understand and I really enjoyed doing it. I also found that it is a real buzz when a French person speaking English looks to you and says a French word and you can give them the translation that they are looking for. At the end of the lesson we took it in turns to recite a french translation of a strange haiku about a frog which jumped into the water making a ‘plock’ sound. When I had a go the teacher running the class comically remarked: “I do like the English plock”.

We had a break between activities so we headed onto the playground for some sun. The other students sat down on a bench beneath a tree whilst myself and R, on a whim, decided to see if we could join in a game of football with the French primary school pupils. At first they looked at us like we were giant aliens from the land of fish and chips, however with some persistence and some French from me we were soon involved. R was immersed into the football and I was pulled aside by a little girl. She preceded to introduce me to all of her friends and involved me in a very complex imaginary game involving a ‘big mouse’. In return I taught them ‘heads, shoulders, knees and toes’ and how to spin a hool-a-hoop on their arms. The highlight was definitely when the little girl (with her arms wrapped round my neck) told me that my french was ‘very good’ and asked me how I know French and English. It occurred to me that with children you don’t really need to speak the same language anyway. The language which will get you the furthest is the one you learnt in your own childhood- one of imagination, ball games and make believe. Being with the children made me more confident because I wasn’t so scared of making mistakes around them because I felt that they would be a lot more willing to bare with my clumsy errors than adults might be. Talking to them and them understanding and talking back made me feel on top of the world and it cemented in my head the fact that languages are certainly for me.

Me turning a skipping rope with a small boy jumping

For lunch we had a meal at a catering college. This was at the other side of the city and involved a short journey on the metero. We had all been given day tickets so I retrieved it from my pocket when we reached the machine. I held it up to a member of staff to check it was the right ticket, but she burst out laughing. It was then that I was told that I had very nearly fed a plaster into the metero machine instead. When the ticket was found and we were on the train I was next to a French student called A. She was listening to James Arthur’s ‘impossible’ and singing along.
“Is that James Arthur?” I asked. She looked puzzled.
“James Arthur?” I tried again. I was about to try for a third time whilst beginning to regret my question in the first place when my French teacher ducked down to our level and said: “James Arthur?” In a thick French accent. It is at this point that A’s face lights up and she says: “Oui!!”. It is amazing what difference an accent can do. The students at the catering college are learning how to become cooks and servers and the food was delicious. As we were now in an unknown part of the city after lunch we decided to go out to do some shopping and tourism. Once we had separated from the french students who had lessons back at CSRP staff member J did an impression of an enthusiastic tourist in order to get us to where we needed to be. His charade even included a very large map held at arms length and a puzzled expression. We decided to go up to the basilica on the hill, to get to which we went on the small tram which goes up the incredibly steep incline. The priest inside the basilica was very kind and said that we could touch everything and anything we wanted because there were so many beautiful things to see. He was right- there were ornate chandeliers and carvings to explore and we enjoyed taking the time to just sit in the calm and take in our surroundings.

The basillica roof held by ornate collums

A sculpture of the cruxifiction

A stained glass window with the sun coming through it

Outside the basilica there was a fantastic view of the whole of Lyon. E, a french student involved in the trip last year, was able to point out her house in the distance below. I had been squinting through my camera at the beautiful view but I was delighted when we found an amazing tactile map of the scene with Braille and representations of all the tiny houses and monuments. We spent several minutes exploring this and taking our fingers on journeys through the maze of miniature apartment blocks. Next we went to the FNAC- a ‘buy anything you can think of’ kind of shop- in search of audiobooks. There were no titles which particularly caught my eye in the audio section, but I couldn’t help myself from buying a print copy of the ‘fault in our stars’ in French. I will have to try and scan it or put it under a CCTV magnifier, not the easiest way for me to read by a long shot, but ‘Nos étoiles contraires’ has a very firm place in my heart. Even if I can’t read the words I am so glad to have it.

The view of Lyon all the way to the horizon

The metal tactile sculpture of the scene

French supermarkets are similar to English supermarkets in the sense that there are a lot of things which are just too good to buy! We ended up buying far too much food for all of us to eat, even with our dinner guests from the college. When we got back we had the food in a big picnic style with drinks of Cola and Grenadine syrup squash. We relaxed on the sofas and myself and P played a complex game of chess with many missing pieces. This game’s complexity was increased by the fact that we had to use alternative pieces for different missing figures, meaning there was always an element of confusion over what we were actually moving. The night finished with us all discussing how much we have become like a family over the last few days. And it is true, we really are like a family now.

Myself, C and P sitting on the sofas playing chess

“Have You Got the Keys?”

Day one in Lyon:

For the first time in my life I was willing to wake up at 5am. Granted, I hadn’t slept in the first place with all the excitement and pre-trip jitters but I still count this as an achievement. We were on the bus and eating a ‘continental’ breakfast (being that it included a pain au chocolat) by 6:30am. After several rounds of ‘is this the way to amarillo?’ we arrived at the airport where we were zipped through security by the special assistance desk. At every stage our guide announced to the waiting staff “It is a group seven blind people”- probably not her average day at the office!

On the plane we had a small hiccup. C (my french teacher and the trip organiser) had been given an ipod touch to take photos with by an IT teacher back in England. It was on the plane that we discovered that the ipod was permenantly in ‘selfie’ mode. So whilst attempting to take photos of the outside world all that could be seen was your own puzzled expression staring back at you. It was sometime later that we discovered that it was actually the world’s most egotistical ipod, and it didn’t genuinely have an outward facing camera.

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At the other side, having landed in Lyon, we were greeted by a very enthusiastic man called V from the college. I was told that he didn’t speak any english, and yes I would be one of the only French speakers on the minibus. I was very proud when half way through the journey, after much nagging from my fellow passengers, I somehow managed to ask what time we would be arriving at the college. Even more surprisingly, he seemed to understand me and in turn I understood his eerily accurate response of: “seven minutes”.

After briefly going to our accommodation to put our bags down we headed into Lyon to find some food. Before we left C found herself surrounded by our francophone friends who were enthusiastically describing the intracate nature of locking a gate. We were hearing different recommendations of correct key usage from all directions and, possibly more confusing, they were all talking simultaneously. Also in very fast French. From what I could gather the key centred concern was based on the fear that a child, on seeing the unlocked gate, would break out into oncoming traffic. I was later told that this was a ‘very french’ way of going about matters: loudly, enthusiastically, repetitively and whilst a group of others are also attempting to do the same. This was certainly an incentive to check and double check the lock before we went anywhere and we found that keys were a centre of discussion at multiple points during the day.

We then went onto a ‘Casino’ supermarket and began grabbing ourselves snacks for lunch. This included; crisps (which we couldn’t identify the flavour of- though our guesses took us to somewhere between mushroom and mustard) and baguettes. We hadn’t thought about the fact that we would be eating outside in a park, and subsequently found ourselves creating inventive methods for cutting slices of Emmenthal from a chunk. The picnic was great fun and it was so lovely to be out in the sun and having a laugh together. I was beginning to get to know the group and my excitement was building for what was ahead.

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The first event in our programme began before dinner. It was a party with a mixture of students and staff to mingle with and a table of nibbles to choose from. This was the first time during the trip that I found my french was very much put to the test. The students were all lovely but I found that I was really struggling to think of anything to say in general- rather than having a lot to say and not enough french to say it. Myself and a member of staff from my college who shared this feeling tried to explain this finding to one of the french members of staff. In an attempt to make our english easier to understand she said “We find it difficult to make friends” as opposed to “We are shy”. The realisation that this lady now possibly felt we were implying that everyone was unfriendly hit hard, and we deeply feared that we may have accidentally severed our college’s anglo-franco connection for good. This worry was intensified when the lady made her excuses before moving on to talk to other people.

After dinner we had the pleasure of listening to a little performance by the french students. The Cité Scolaire René Pellet is different to our college in England; in that it accepts both blind/visually impaired students and their siblings. This means that they have a mixture of sighted and VI students. They sang several songs for us and I got the strong feeling that they share our college’s ethos of supporting and caring for each other. Later the ‘girls’ of the trip shared a herbal tea, some fruit and a snack. In France they drink most hot beverages from a bowl rather than a cup- I really like this and think that bowls of tea would certainly help me during those late night revision sessions!

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I Forget That You Exist- And That is My Biggest Compliment.

Four years ago today a puppy was born who would go on to change my life and touch those of the people around me. She gained the trust of my parents to keep their daughter safe, the respect of my friends and eventually the pride of my, once reluctant, secondary school. She has travelled all over the country with me and was my motivation to get up and keep going when it was really tough for me to find that strength from within myself. And four years ago, in fact up until only eighteen months ago, I had no idea she even existed.

She helps me in so many ways every day without fail. Each morning she wakes me up by licking my hand or by staring patiently at me from the side of my bed. She knows what I am feeling better than I do most of the time, leading to people observing her rather than me in order to know how I am doing. She is a guide dog plus so much more and I owe her so much.

I forget that she exists even now that our paths have well and truly crossed. I forget she is there because she is so seamlessly a part of me. I am not trapped, or stuck, or lost when I have her. In any tricky situation she always seems to be able to help me “find the door”. She has shown me a freedom which I would not have been able to even imagine beforehand.

So here’s to Noodle- a star in her own right and a friend to nearly everyone she meets.

Thank you for existing.

Lai and myself in a coffee shop

Then My Trousers Illuminated Themselves…

Last saturday I went on what I believe to be my longest independent rail journey so far. But don’t worry this post isn’t going to be about the triumph of independence or anything as grand as that…

On days of long journeys or out of the ordinary activity I tend to wake up very early in the morning in order to give myself plenty of time. I am one of those people who needs time to pack and unpack their bag at least three times to check they definitely have everything, who will need time to change outfits at least twice and also requires a small allowance of time to run and collect forgotten items. Not to mention I also need to get my dog, AKA furry child, ready. Thinking on this I set my alarm for 5:50am and promptly fell asleep knowing that I had plenty –if not too much- time to get to the station.

At 2am I woke up. In the brief moment of consciousness that followed I assured myself that I could go back to sleep, safe in the knowledge that I had so much time ahead of me. In hindsight I now know that those few waking moments at witching hour were a warning from my sub-conscience of things to come.

My alarm went off as expected with its usual cacophony of deafening pre-installed jingles, and after I had silenced it I checked my twitter feed as I have become accustomed to doing in the past months. I was feeling pretty relaxed and a bit tired, but when I swiped up to the top of my screen my head imploded. 6:50am. That can’t be right? After confirming the time with my iPad and laptop I realised, with a sinking heart, that I had made a terrible error. Rushing about I quickly did a triple check of my bag, grabbed my lunch from the kitchen and rushed Lai to the pen. My taxi arrived promptly at 7:15 as planned. My hour and twenty minutes preparation time had been banished to just twenty minutes. In my rushing I hadn’t had time to get changed out of my pyjamas but had somehow managed to stuff a set of clothes and face wipes into my oversized bag. Officially dishevelled and panting slightly I ran up the path to the waiting taxi.

On the short ride from the college to the station my mind was dancing about on the, rather prominent, issue of how I was going to get changed and also avoid public humiliation. I paid the driver and he very kindly guided me from the taxi to the ticket office where I was then met by passenger assistance, who took me onto the dark platform. It was still early and the sun hadn’t risen properly yet. I was self conscious of my choice of attire but I was for once grateful that it was so dark and hoped no one would notice.

If only. If only I had chosen any other pyjamas the night before. The assistance man gave me a surprised look as we stepped into the darkness and I felt his arm shake slightly as if he was holding back a laugh. That was when I saw it. Out of the bottom of my eye I could just see a greeny yellow glow rising up my leg. My heart sunk for the second time that morning. I was wearing my glow in the dark pyjama bottoms, the ones I had bought in town years ago because I thought that the novelty of them was rather endearing. They had been a talking point at sleepovers for a year or so, and then they had began to get a bit short around the ankles and were subsequently demoted to ‘it’ll do’ sleepwear. The taxi driver who had guided me around the front of the taxi in the bright headlights had unknowingly charged my trousers to the max. On further inspection I had never seen them glow so bright. Now here I was, on a train station platform at 7am wearing alarmingly luminous trousers.

I asked quickly if I could be shown to the toilets and once in there, still ashen faced with the stupidity of my actions, I quickly pulled on my leggings. From the other side of the door I could hear the guide whistling in a very up tempo we-have-to-go manner. Alas, I pulled my bag back onto my shoulders and hurried out, now painfully aware that I was still wearing a top which said ‘sweet dreams’ in big letters across the chest.

Once on the train I wiped my face with some of the wipes I had shoved into my bag and ate some mints in place of brushing my teeth. I was clutching my coat to myself in an attempt to conceal my embarrassing pyjama top from the teenage couple opposite me. There was no toilet on this train and no way of actually swapping tops. In the end I resorted to a layering technique of subtly covering up my pyjama top with it’s more acceptable substitute. It must have looked quite bizarre to the other passengers, but I think I got away with it by pretending it was a jumper and someone had stolen its sleeves…

It could have been a lot worse because I could have forgotten to set my alarm entirely and missed my train. Though the moral of this story is always make sure you change the hour of your alarm and as well as the minutes.

… And when planning on being publicly pyjama-ed always make sure they are not brighter than most traffic lights…

A pair of glow in the dark trousers

NATSPEC Student Conference

On tuesday I had the pleasure of being part of the group representing my college at the NATSPEC student conference. NATSPEC is the Association of National Specialist Colleges and it works to connect and support all the specialist colleges in the country. The conference was set up to give the students of the colleges a chance to give their opinions on the specialist education system and to meet each other.

Unfortunately getting into a specialist college isn’t as easy as enrolling in a mainstream school. Funding needs to be granted from the local authority for a student to be educated elsewhere, and a case needs to be made for why the funding is necessary. The funding application process is long and stressful, and a lot of hard work needs to go into it. This is something that every student at the conference had to face to get to their specialist college, and why NATSPEC are working to change the system for the better to give more young people the opportunity to benefit from specialist education. The new Children and Families Act is due to change the specialist education system again, and it is important that the views of the people it will effect are shown now.

The conference was held at the very impressive  National Star College near Cheltenham. The day started with introductions and we were put into groups with a few representatives of each college per table. On our table we were sharing with some lovely staff and students from Derwen College who we quickly got chatting with. The activities involved writing down our answers to some set questions on large pieces of paper. They covered a range of topics- from what we would recommend about specialist colleges, to what NATSPEC should do to improve the current system. With each question came very valuable discussions and ideas began to fly. Everyone on the tables, both staff and students, were passionate about the fact that specialist education is vital and needs to be protected and made available for more young people. As funding gets more and more difficult to obtain for prospective students the more these colleges struggle to stay open. I had never really thought about the effects of the funding system on the colleges themselves, and it was a real eye opener to hear about it. All over the room I could hear words like ‘Life changing’ and ‘Independence’ being used and so many more positive words being scribbled in big letters on each group’s sugar paper. It breaks my heart that every year so many young people get denied these opportunities because of the harsh funding process.

When asked what I would say to someone thinking about going to a specialist college I replied: “You can stop worrying about your disability and start learning and living.” and I mean it with all my heart.

It was an amazing day and NATSPEC is now in the process of planning it’s new campaign using the ideas students gave. You can read more about NATSPEC here, and see my thoughts on my personal move to specialist education here. I’ve seen the way specialist education can change lives, and I think it is something that we should definitely be fighting for.

Moving Forwards

As I write this I am at my desk in a room that I didn’t know I would be living in less than two months ago. There is a suitcase on the floor with stuff spilling out as I attempt to pack. My ever faithful guide dog is asleep in her bed, choosing to ignore the chaos. I have been at my new college for seven weeks now and it is nearly half term, and time to go home.

If I think about all the things that I have done in the last seven weeks it feels like I have been here for a lifetime. I’ve grown so much in independence, resilience and responsibility. I’ve done so many weird and wonderful things and formed closer friendships than I could have ever hoped. If I think about the the amount of time that has passed between nervously getting out of the taxi with my Mum and Dad on the first day to right now, it feels almost non-existent.

Moving to a specialist college was hard at times because in some ways it felt like I was giving up on myself and on ‘the system’. I want to live as a person and not as an impairment, and I was afraid that the move to specialist education would contradict this aim. But I am proud that I have made the decision, because now I can learn and I can have just a normal college experience. Normal meaning not having to justify myself, or fight for my access to the curriculum. My college isn’t so different from any other- there are a wide range of pupils with different personalities and abilities, we do lectures in the day and have fun with friends at lunch and in the evenings. At my old school I was constantly having to justify why I needed help, why I was doing things in a certain way and why it mattered that I couldn’t read things. It was exhausting. Now I barely have to talk about my sight because it is just a matter of fact that everyone has their own requirements for learning. On letters from school it used to state that things should be in my ‘preferred’ reading format, as if it would be nice if I could have it but it wasn’t pressing if I didn’t. Now my lecturers know what I need and it is waiting for me on the desk when I come into the classroom. I don’t worry anymore, because the focus at college is certainly on the person rather than the impairment.

On top of normal subjects most people here do additional lessons. Transitional support helps us to plan what we are going to do when we leave here and independent living skills teaches us everything from ironing to cooking. It’s not all about learning to get grades, it’s about learning for life itself.

I’m home for the holidays now, and although it is good to be in my own bed and away from work for a while I can’t help but think about college. This time last year I was struggling; ill, stressed and there was a question mark over whether I would actually complete my secondary education. Moving on, the changes are huge and overwhelming, but so very positive. I am so grateful to my parents for putting massive resources of time and energy into helping me get the funding to go to college, and to the college itself of course.

Obviously I know that we live in a ‘mainstream’ world and that I am not always going to be able to have the same ease of access as I do at college. However after my experience of studying for GCSE’s with very poor access to the curriculum there was no way that I could repeat the process for my A Levels. Whilst at college I am learning what technology can help me from other people, rather than doing my own research and being unsure of what I actually need. There are many people in the VI community who see going into specialist education as isolating yourself from the ‘seeing’ world. I don’t see it like that at all! In my opinion going into the specialist system is helping me repair almost. I am learning that it is possible for me to learn properly and achieve given the right resources, and I am also learning what those resources are. When I do end my time at college, and hopefully move on to university, I will know what I need and how to produce it. I will have had the time to try different things- technologies, printed formats and techniques to know what I like and what works best for me. Going to college has taken away the day-to-day emphasis on my sight, and it is truly allowing me to see myself, and develop, as an individual. This is something that I needed to do very badly, and I am so grateful I have been able to. It is definitely onwards and upwards from here.

I'm in repair

Talk to the Face, the Dog’s not Listening

Sitting in the church it was the average scene for any 10:30 am gathering. People bustled between each other for how-do’s and pleasantries. It was my second time here but the congregation seemed to have changed enormously, the many small children and their parents had probably headed somewhere for the holidays which left the slower of the worshipers to hold fort.

We prayed enthusiastically, we sang even more so, and it was all very nice. Then a sermon. Though I understand the concept of God and my faith in him is slowly building after an amazing time at a christian summer school, my principles remain untouched. The sermon went along the lines of sharing the word of God, however seemed totally out of sync  with the modern world. It was suggested that we bring up God in conversation with our atheist friends, our acquaintances and even people we meet in shops. I couldn’t help but find myself thinking how this probably wouldn’t be doing me any favours as a ‘let’s talk about God’ line with my local butcher would probably earn me only a smack in the chops. Our preacher then went on to exclaim how ‘as long as we have faith’ we will always have food, clothes and everything essential to live. Because God will provide it.

This is one hurdle in my religious journey that I struggle with. How can I accept that, when I know about the starving people living on the streets? The alone, the ill and the hungry. Are they not praying hard enough? If this is the case God doesn’t seem very charitable. Terrible things happen that make people lose faith; that doesn’t mean they should be given up on. Food doesn’t miraculously appear for those who pray, like some kind of halo-scanning drive through, Christians go to Tesco like everyone else. Though I (like many others) will be thankful for the food and the money we use to buy it, but it is through our own doing that we can feed ourselves. We can thank God for numerous things in the process of creating, buying, preparing and eating food but at the end of the day we have to do the leg work- and it costs. I am in no doubt that the people in Syria (a used example in the sermon) are desperate for food. They must long for it with every inch of their dwindling energy. So are they hungry just because they aren’t Christian and praying to the right God? In my opinion that is not cool.

After the service I faced misconceptions of my own over tea and biscuits. I am used to life with my guide dog and the often unwanted buzz that it brings. During a conversation with one lady she stopped mid sentence and went into a high and squeaky voice and fussed my dog. A voice of that pitch could only belong to a ‘dog lover’: the kind of people I see on a daily basis who say things like “I know I shouldn’t but I can’t help myself…”. I politely ask that Lai is not stroked at the moment. I can feel that my dog is a little jumpy, a fly (her chase toy) appears to have accompanied us into the room and I want to keep full control of her so she is on her best behaviour in this new environment. She doesn’t say anything, and seems to have taken this personally and disappears. Minutes later she reappears, however this time she brings with her a daughter.

“Go and introduce yourself to Lai.”

For a moment I think, hope, that she has just mistaken our names but as I focus I see that she is gesturing towards my canine companion and her daughter is launching herself on my guide dog. I remake my point, feeling slightly bad and a little confused, and the woman makes her apologies once more and we all join a group of happy chatters.

A minute later I am spoken to by another lady. I am happy to make conversation and chat but she seems to have her mind set on one topic only. Blindness. More specifically mine.
“Are you able to get about a bit then?” She asks. I notice instantly the way her tone has gone from friendly to pitying but holds no hesitation in asking the question. I tell her that I am independent and travel a lot, in fact I am living at a residential college in september. I restrain the cheeky voice in my head telling me to ask her the same question with a gulp of my tea. Though I answered pleasantly she seems a little surprised with my response, like she would expect the contrary.

“Have you always been blind?” She asks quickly. I have had this kind of conversation before with strangers, but never have I felt quite so interrogated. I explain that I am not completely blind, that I was born blind in one eye and the other eye’s sight deteriorated a lot when I was eleven. Her response was:

“That must of been traumatic. Did God bring you through?” It felt as if she had mixed up her expression. The first statement was said briskly as if she were making observation of the weather, and the latter like I was a dying kitten under a four by four. I decided to be honest: No actually, God didn’t bring me through. I looked for God but couldn’t find him. I had to do a lot of work myself and be strong. It was tough but you do what you have to do. Well… maybe I didn’t manage quite that but it went along those lines.

Without a beat she passed onto the next question. I couldn’t understand what her intention was, she hadn’t passed any comment on any of my responses. I am fine with people asking one or two, well thought out, questions about disability to me. I see that as helping spread awareness of visual impairment, however I just felt uncomfortable with this interrogatory style and her expectation that my life is limited and confined.

“So have you managed to get some kind of education?” She blasts on. I tried to work out whether her choice of words was intentional or just unfortunate but couldn’t come to an exact conclusion. I respond with yes, that I am waiting on the results of my GCSE’s and in september I will go to college and study Psychology, Sociology, English Literature A levels and Braille. She doesn’t know what to say and was clearly not expecting me to of had any kind of education at all. She muttered something about how she hopes I do well in my GCSE’s, and that A levels are very hard, before moving away.

I found my Dad who was happily chatting away to a man who appeared to be more the type of person you would expect to be in a church. He was polite, could hold a conversation and had a sense of humour. He also appeared to be the husband of the dog-loving lady from earlier. Conversation is light hearted about christianity and the structure of the church but the topic, as usual with strangers, turns to my guide dog.

“I won’t stroke her because she’s wearing that harness” says the man smiling. I smile gratefully back and am just about to ask him how long he has lived locally when his wife steps in.

“I just got told off for doing that.” I am completely taken aback. She doesn’t sound jokey or lighthearted, just outright bitter. I am confused and can feel little bubbles of rage popping in the back of my brain. It doesn’t happen often that I get angry, but the collective attitude of the people I had met seemed so negative, so confrontational, so backwards. There seems to be something inside me that says I shouldn’t even feel anger in a church, let alone show it, so I suppress it and smile.

“Please don’t feel like I was telling you off, I just needed to say that it isn’t a good time to stroke her right now.” She looks affronted. I can tell that in her mind she is seeing me as a rude teenager who shouldn’t of come to her church in the first place. Her husband steps in:

“Is it detrimental to their training if they are fussed?” He asks, keeping his lighthearted tone. I am so tired of this now. I become more and more aware that two out of the three people who had spoken to me seemed to see me as nothing but a chauffeur for an amazing dog or a disability to be examined. I decide that I might as well be honest.

Yes, it is detrimental to their training. Guide Dogs are constantly being trained and having their training reinforced by their owners. I depend completely on her to act perfectly in all kinds of social situations, and most importantly I put my life in her hands on a daily basis to live an independent life. Though people want to stroke her, sometimes I just can’t let that happen because I need her to stay calm and ready to receive commands. It is a lot harder to keep control of a dog which is over excited and I, as her owner, can recognise when it is an ok time for her to be petted and when it isn’t. And sometimes… just sometimes… I like people to talk to me rather than her!!

Well… maybe something like that… I am far too polite for my own good sometimes. Dad could sense my tension so we thanked them for the service and the tea and left. As soon as I stepped out of the graveyard I erupted into flames. I really do not feel anger often, I like to stay calm and hope that people will do the same around me. But this time I was furious.

If you are reading this thinking that this is a rant about religious people’s attitudes towards disabled people, stop. I know lots of religious people and I am religious myself. This is the kind of attitude that many disabled people face day in, day out, no matter where they are. It just happens that the most concentrated experience of people misjudging me was at a religious building on a summery sunday morning.

When in doubt of what to talk about to a disabled person, stick to the weather.

Image of a chair with a light bulb above in a dimly lit room.  interrogation