Category: Disability

Not a Nerd, A Linguist

I love languages. I haven’t always. My language learning was somewhat limited in secondary school as PowerPoints made me peeved and speaking exercises were sickening to me. I have always felt that there is something so incredibly embarrassing and frustrating about trying to speak a foreign language. It is almost like you are a toddler again, crying with frustration about how you can’t tell people what you really think with the limited words at your disposal. It’s yet more embarrassing because it is easy to feel when talking to a conversation partner in a foreign language that you are incredibly boring. Where in English you would usually launch into an elaborate story about how the coffee machine scalded your hand and how the dog was sick in your slippers this morning, when asked how your day is, in a different language you resort to saying ‘It’s ok’.

However when you do eventually get past the point of being horrendously embarrassed with every decibel, you can start to enjoy yourself. You start to learn phrases which you like and which are fun to throw into conversation (my particular favourite is ‘it’s a storm in a teacup’) and then you feel pretty smart. Yes I said it. You feel smart. Why is there a big taboo over acknowledging when you have learnt or done something which represents a high level of intellectual skill? Everyone likes to feel smart, and that is one thing that you do feel with languages.

Taking you back a few weeks to my trip to the Touchdown Dance event in Birmingham; we were waiting at the tram station when a Japanese couple approached a friend of mine. Between them the couple had determined how to ask how to get into ‘Centre town’. My friend explained to them that they needed to get the tram from the other platform. The couple did not understand this, and I found myself trying to explain it to them. My friends tried to keep their laughs internal as I told the couple in a thick Japanese accent exactly what my friend had said, occasionally throwing in one of the only relevant words I know in Japanese ‘Ryoko – Travel’. The couple got it though, the accent and that one word of their mother tongue had earnt understanding, and the laughs of my friends turned to surprise. It was a pretty good feeling.

I have the confidence of a spoon. I don’t like compliments and have to work hard at not getting angry at those who try to give me them. In fact until the trip to France in march this year I wouldn’t even admit that I would like to do a degree within languages because I was so adamant I was rubbish at it. In my classes I don’t feel that confident, because my colleague and lecturer obviously know a lot more than me, I’m learning though. But just occasionally, completely out of the blue, my knowledge takes me by surprise and makes me smile. So now I have just decided that smiling is as good a reason as any to take a degree in a subject.

This week I have done work experience in the languages department of my college and I have really enjoyed it. Particularly today when I delivered a lesson to an NVQ class.

So… If nearly two-thirds of 300 UK firms have said that they prefer staff with language skills. Why aren’t more people learning them? French, German and Spanish were highly commended by the companies but Arabic and Mandarin are vastly growing in importance. Research shows that one in five schools in England have a persistently low up-take of languages, which in this job deprived environment is ridiculous. However, with most schools in England offering mainly European languages like French, German and Spanish the chances of even the most enthusiastic young people picking up highly sought after languages like Arabic and Mandarin are slim. Make it available in schools and make it exciting. Communication is never a bad thing.

At the news that in college we may get the opportunity of conversational Arabic next year with a volunteer I was very excited. Then I somehow felt the need to make a self deprecating phrase about how I am such a nerd that I embarrass myself sometimes. To which my teacher replied: “You’re not a nerd, you’re a linguist.”, and I guess I am quite proud of that.

 

Prompted by: http://bbc.in/1lY0HkD

Hear us Roar – Right Not a Fight

If you have been following my musings for quite some time you may remember that I had the pleasure of attending the Natspec Student Conference way back in December.

Since then Natspec’s campaign to give choice to young disabled people in education has grown into a rather stunning campaign called ‘Right Not a Fight’.

The title (of course) is referring to the battle which many young people have to go through before they can gain funding to get into specialist colleges. I loved the december conference and I was honoured to be a part of the group which coined the phrase ‘Right not a fight’. On tuesday I headed out with a group of students from my college to the capital to take part in a protest with Natspec outside parliament.

The day started bright and early and myself and friend T found ourselves to be the only two students to travel the four hour journey in the car rather than the minibus with the others. The minibus goers bided us farewell and began the journey, while staff member and driver K was still contemplating where on earth we were going to put the umpteen lunch bags we had been left to transport. Encased in egg sandwiches with a distinct absence of cool bags on one of the hottest days of the year, we were off.

Within college, marketing is somewhat a mystical department. We see very little of the staff there apart from when they appear at college events to snap a few photos. With only a vague idea of where they actually worked on the campus it was really nice to get to know K and L. We had some crackers of conversations on the long drive down including; comedy nose breaking, mockery of Nick Clegg’s tweet announcing his love for apple crumble and a lot of staff/student myth busting.

It’s relatively rare that staff find themselves trapped in a vauxhall with a dog, two students and many heat festering sandwiches so K and L appeared to use it as a student/staff ice breaking exercise. As the hours ticked by myself and T kept a close eye on a very suspicious looking cheese and pickle sandwich that in the heat appeared to be haemorrhaging chutney- it was our version of a barometer throughout the day.

On arriving in London and being presented with our ‘Right not a Fight’ t-shirts we went in search of a cafe and a toilet. To get accessible facilities we ended up going through airport-like security to use the ones in the House of Commons. We felt very privileged, and in the Foyer I met a group of small children who asked me if Noodle the Guide Dog was an MP. “Yes she is” – I replied with a smile. Apologies to the parents who likely later had to explain to their child that dogs, bow-tie wearing or not, cannot be members of parliament.

We were meeting on Old Palace Yard, Westminster and though we were strictly prohibited from using ‘Noise Producing Objects’ myself and T decided to take the risk and bring out our ukulele and Guitar. If I was to be asked previously what I thought the first time I performed in public would be like, I would have never have guessed it would be singing ‘Roar’ along to my ukulele in front of the House of Commons. Several MPs popped over the road to see us, and now that the noise rule had been well and truly demolished the group began to chant too. Other colleges who are members of Natspec were there also and it was lovely to catch up with people from the December conference and meet new friends too. My personal highlight of the day had to be meeting a charming young man called L who I communicated with through Makaton. I have been learning makaton since september, but this was the first time I had used it in real life. He was lovely and even told me about his pet cat.

Many photos, videos, chants and renditions of ‘Roar’ later we were back on the road. It did feel like we had been travelling for an awfully long time for just an hour and a half protest, but it was completely worth it. On the way back myself and T reflected on what our college has done for us, and how close the campaign is to our hearts. L and K joked that they should have had a dictaphone running to take quotes from us. Overall it was a fantastic day and I of course will be supporting Natpsec 100% as this campaign flourishes.

Myself and T playing our instruments and singing  The campaign group of all the students from different colleges and the staff


“She got her looks from her father. He’s a plastic surgeon.”

(Irrelevant quote but it made me laugh)
This Thursday cuppa is going to be a bit of a throwback….

This is little old me from a couple of years ago.

Me with my microphthalmia eye looking straight into the camera. I am wearing a warm coat and matching hat.

This picture represents various things:

  1. Yorkshire is rather cold in September.
  2. My parents found one hell of a good sale in Tog 24 that year.
  3. By my sticking out tongue one could guess this is as close as I got to a rebellious streak in my Tweens.

But you may notice something else, in fact it may have been the first thing you noticed. I have one eye smaller than the other. Quite significantly so in fact.

At the time the eye itself didn’t really bother me, and it never particularly has done since. Talking to other people with facial disfigurements/birth defects/fellow losers of genetic bingo, I’ve found that this is often the case. It’s other people’s reactions which make things hard. To me it is just my face, no more and no less. I am more angered by teenage acne than I am by my puny peeper.

It doesn’t bother me, but like any difference it can quickly become a weakness. By the time of this photo I’d been called a vast assortment of insults: from alien, to scary, to freak. But the one that hurt the most came out of the blue at the village stables one day.

“Why is your face broken?”

This is the first time that I remember my emotional response being anything other than outrage. Tears. Broken was the biggest insult. I’d always been told I was different- and that was fine. The primary school mottos of “everyone is an individual” had tattooed themselves to my brain. But broken meant I wasn’t just different, I was irrefutably wrong. At this point I asked my parents for the first time about corrective surgery.

Luckily I didn’t have anything changed and with the introduction of shaded spectacles to help my other eye, the little one is barely noticeable now.

I don’t know what the point of this story is.
But don’t point out other people’s flaws, because they are probably already aware of them.
And don’t change. Ever.

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

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.

How to Make a Bubble Wrap Advent Calendar

So it is that time of the year again. Where the shops get crammed, the weather gets colder and if you hear Slade one more time things may get heated… It is also the time where we pay the most attention to the passing of time using advent calendars.

It crossed my mind the other day that there are no really interactive and tactile advent calendars. If there was such a thing it could benefit those with sensory impairments, those who don’t like/can’t have chocolate and small children who like things that ‘do’. Chocolate advent calendars are the most conventional, and there are also figurine or picture calendars which admittedly aren’t very exciting (especially to those who can’t see the pictures). By chance on the same day I was made in possession of a decent quantity of bubble wrap. Queue a creative frenzy… If you would like to make a tactile bubble wrap advent calendar read on!

  • The first thing you need to do is work out how many bubbles you can have per day. The bubble wrap I was used had large bubbles so there were six to each day.
  • Next cut away any excess bubble wrap so there are just enough bubbles for each of your 25 days- leaving one line of bubbles spare along each edge.
  • Then take your cardboard and cut it to the right size. (If you want a standing calendar you could make it in three moveable pieces and stick them together with tape).
  • After, stick onto the cardboard 25 numbered pieces of paper. These could be any colour you like but I chose neon post-it notes for high visibility and simplicity. Make sure the paper is the right size so that the correct number of bubbles fit when placed over the top. I used blue polkadot washi tape to stick them down, which gave the calendar a nice pattern.
  • Next is the trickiest part. Pop the extra line of bubbles along the edges so that they are just flat plastic. Fold them over the edges of the cardboard and stick them down to the back of the board. You should end up with a very clean looking, tight, layer of bubble wrap over the cardboard.
  • Finally decorate any spare space with christmas themed messages or images.

Every day just pop the bubbles!

Happy popping!

Scattered art supplies on the floor

Draw the numbers 1-25

The finished product is brightly coloured with the message merry christmas below.

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

Off His Trolley?

Some of you reading this will know that I set off to a residential college on friday. From friday onwards I will be living at college during term time. It is all very exciting, and there is a room downstairs currently dedicated to the boxes, bags and cases that will be used for the big move. My family is just as excited as I am but my Dad, being a chronic worrier, tends to go overkill at times like this. My packing currently consists of three (fairly light) plastic boxes, one large case with wheels and a few assorted bits and bobs. This is why I feel that what happened next was a little over the top.

Dad ordered a large industrial haulage trolley from the internet a few days ago because it will ‘help with carrying things’. Like any teenager I began to squirm. I don’t mind being different however being the girl with the father ferrying things around in a steel trolley worthy of british rail, wasn’t in the least bit desirable.

Yesterday was the due date for the trolley’s arrival. We waited in and surprisingly promptly there was a knock on the door and a large parcel.  The first saga to unfold (or not) was the box. It was a strange triangular shape and appeared to be welded to whatever was inside. Dad -in his enthusiastic state- then had to resort to tearing the box apart to reveal a large amount of shiny metal. The trolley was a large platform with a foldable handle- and I hated it already.

“How will you get it up the stairs?” I protested.
“There’s a lift.” Said Dad, not looking up from his new toy.
“What if someone using a wheelchair is moving in and needs to use the lift?” I retried. I got no response for this pretty weak argument.
“Can’t we just carry my stuff like the other families will be carrying theres?” I sighed. I really don’t want to stick out as odd the second I arrive at college.
“All the other parents will want one! They will be like: ‘Hey, who’s that guy with the trolley, we should get one like that.'” He responded- slipping into the half fantasy world where things like this are cool. I could tell that this would probably escalate quite quickly if I kept arguing. Looking at it despairingly once more I asked- “But where are the wheels?”

This was a good point. The bottom of the trolley seemed to be just smooth metal, with no sign of wheels what-so-ever. It looked as if it had been made as a solution for removal men in Greenland as a half sledge- half trolley. After some more rummaging we found the wheels hidden in the box. They had no instructions enclosed and as far as wheels went; these looked like they were made for the tricycles of the trolley world- rather than this huge delivery lorry.

With disappointed mutters he turned the trolley back to being the right way up. That’s when he noticed the tear. At the platform part of the trolley -where my relatively light bags would sit- there was a large gash through the middle. It looked as if it wouldn’t be able to carry my teacup, let alone a case. Sadly he packed it back into the torn box (with great difficulty) and organised for it to be sent back as faulty.

I can’t say I am sad at this loss and I am more inclined to dance with joy over the fortunate death of the trolley. As Dad doesn’t work as a porter, or a delivery man, I make the assumption that the trolley was unnecessary: though he argues it just isn’t as clear cut as that. I suppose we will only know who was right on friday…!

A humongous orange case carried by two struggling men