Wednesday, 22 February 2017

A weekend trip to Dublin

18th -20th February 2017


Arrived in Dublin at 8am ready and raring to go!
We hopped on the Airlink bus, it was great- accessible, cheap and it took us straight from the airport to our Hostel.

We stayed at the Four Courts Hostel http://www.fourcourtshostel.com/#homePage

It was really cool and the people were friendly. The staff were very accommodating when we told them in advance that I needed Disabled access. They hurried to finish renovating an 8-bed-dorm with an accessible shower room. When we arrived it wasn't quite finished and so they let us have the room all to ourselves -  we certainly made the most of it! I can imagine that when it is finished it will be an impressive accessible room. The dorm means that Disabled people can meet other travellers and not be confined to only private room options. Also a fantastic price for a city-centre location.


I went to a wonderful café for brunch called the Queen of Tarts. I had a cheese and mushroom omelette, a latte and a huuuge Victoria Sponge! (Well half )

Next we went for drinks at the infamous Temple bar. The live music was so good that we ended up staying there all afternoon!
Temple bar: from day-night


The next day we hit the shops!
We came across the most beautiful shopping centre.











We took a break for some coffee and cake - white chocolate cheese cake to be specific, at an adorable café.




Next stop, to see some Irish dancing! We had looked around for places to go but all of the shows were quite pricey. Then we came across this gem of a place- The Church, a converted bar and restaurant which puts on live music and dancing every Sunday night- free of charge! No need to book but do turn up early to get a good view. The food was absolutely beautiful and we had the best seats in the house- a brilliant view.




The Irish dancers were spectacular. A slightly blurry photo because their feet were moving so fast!











Took a stroll on Ha'Penny bridge - the steps didn't stop me.




... followed by more drinks
We met some crazy people...













On our last day we did some sight-seeing


A lovely walk in the park

Dublin Cathedral

Back street wondering
Dublin castle



    The first and last time I drink a baby Guinness.

Wednesday, 26 October 2016

Jerusalem



Arrived in Jerusalem, I ate the best pizza ever! 
To 

It was so lovely to walk in the day with Gran and Grandpa, I loved hearing about the history of Jerusalm. Thank you Howard! 
Last time when I was 17 i went to Yad Vashem: the holcaust martyrs and heroes rememberance authority. It was amazing and emotional, however this time it was rushed. It was a shame as I want to learn more about Jewish history. 
What a brilliant view in Jerusalem! I could see the dome on the rock! 

Tuesday, 25 October 2016

Tel Aviv

 

Been here three days with mum and Leigh! Loved it and loved it! Tel Aviv is good for access including beach buggys at most of the beaches. We've walked for miles, first day 6 hours and the wheelchair battery nearly died. 

Our favourite cafe! We sat and relaxed in the sunshine. Sat listening to my mum and her travel stories. 

Sunday, 4 September 2016

My Right Arm

At the end of July I had a 3 week round trip exploring the countries of Europe visiting Paris, Barcelona and Madrid. During my 4 days of exploring Barcelona on the 2nd day my trip took a turn for the worse. After a full day of sightseeing we decided to stay out and experience the night life it was fantastic but meant that I was out for a full 27 hours without allowing my body to rest. I met so many lovely people all wanting to chat and get to know me and my personal assistants and I was using my communication aid a lot to talk to them.  Many of the locals became quite emotional when they met me because they'd never met anyone disabled before on an adventure like I was. 

That morning we enjoyed watching the sun come up on the beach it was beautiful but all of a sudden I felt my arm lock into place. Straight away I panicked as I couldn't move my arm I didn't know what to do as my wheelchair battery was very low also I was so upset I just wanted to get to my bed to rest. My nightmare continued as we couldn't remember our way back to our youth hostel it took us 3 hours to get back due to no accessible buses or taxis due to it been so early in the morning. I wanted to cry inside I felt so low. Finally we found a bus that arrived in the city but I desperately needed the toilet and saw a McDonald's restaurant near by. I made a dash over and didn't realise there was an accessible lift by the side of the entrance to the restaurant and instead crashed into the step. Once I realised there was a lift at the side I felt a little silly but I was desperate to go to the toilet and struggled to drive my wheelchair. Once in the lift and inside the restaurant there were so many obstacles to tackle before getting to the toilet I felt like I would never get there. After my mad toilet dash I enjoyed a coffee and a croissant desperate for some sugar to help my last leg back to the hostel. 

Once we had finished our breakfast we managed to catch the metro underground as it had opened and was accessible hurray we finally reached the youth hostel I was exhausted. After spending the afternoon in bed I woke at teatime knowing straight away that something wasn't right MY ARM WAS STRAIGHT it would not bend!!! Panic struck as my arm locked into place! HELP I thought! I totally depend on my right arm to drive my electric wheelchair, use my communication aid, sign and even pick my own nose! 

I struggled but carried on going. Talking and using my Dynavox communication aid was extremely difficult it was very uncomfortable and I only spoke when I absolutely had to this was the start of my difficulties and I struggled not having my voice. 

We continued on to Madrid by train once we arrived I felt this youth hostel was special it was wonderful I met so many lovely people here. I became so frustrated as I could not communicate with the wonderful people I had met here this made me feel a little sad as all I could do was follow the signing and lip read what people were saying I was frustrated that I could not join in with the conversations taking place. 

I did not allow my adventure to stop and I kept on going exploring Madrid I absolutely loved Madrid it was such a beautiful place. I enjoyed a night out in Madrid with the people from the youth hostel I danced and laughed enjoying their company, but it was still a huge struggle trying to use my arm. After my night out we arrived back to the hotel at 5am I don't think this helped my arm and it added to making it worse. That day I slept I was exhausted from not using my arm all day it made the situation worse again, now I felt really fed up. It came to our last day at the youth hostel and I felt I could use my arm so tried but straight away I felt my arm lock again I decided it would be more comfortable to use my Dynavox on the table. This helped and was the first time in many days that I managed to speak and use my Dynavox. It was so painful but felt more comfortable. 
On the train to Santa Susana i felt that the relaxing week ahead would help to heal my arm. I even had a massage to ease the discomfort but nothing helped and if anything the pain became stronger. I had to use my dynavox on the table again and could not have it attached to my wheelchair this was too painful. I really started to worry about my arm and the future and felt it wouldn't ever be the same again. I started to panic about things when I got home and the start of a new job coming up, attending college, doing more volunteer work and supporting disabled students to use their communication aids. Everything began to get on top of me I felt sick as I cannot get through life without my voice and using my communication aid and driving my wheelchair. 

I stayed in a nice hotel in Santa Susana and ate really well whereas I hadn't been eating well before. I managed to relax a little and enjoyed the sunshine. When I arrived home from Santa Susana I felt so emotional, drained and tired. As soon as I returned my physiotherapist Penny visited twice to help the arm and joints move again this helped a little but felt so painful and heavy and made me feel so tired and drained.

3 weeks have passed now my arm is still uncomfortable but it is not locked I'm still having to use my Dynavox on the table and find it uncomfortable attached to my chair. I am feeling brighter but now know it will take time to heal. After a trip to the hospital due to the pain they prescribed me medicine to ease the pain and told me I may need further medical help.
I followed this up with a trip to my GP as the discomfort continued and I have now been referred to a shoulder specialist. 

I have been so worried about my arm and how it will be in the future will it ever work the same as it did before. I am now hopeful and feeling better every day I hope I am back to normal soon and back to using my dynavox the same as before. 

Thursday, 3 December 2015

my speech about experience AAC users in House of Parliament

2nd December 2015

First of all I would like to say thank you for giving me this opportunity to speak at the APPG and have Members of Parliament and Peers here to listen to me, because often people who use assistive technology to communicate are ignored and do not have a voice.

My name is Nadia Clarke. I’m 23 years old and I live in Halifax in West Yorkshire. I have cerebral palsy and I’m deaf.

I got my first communication aid when I was nearly 5 years old.  I was one of the youngest in the country and the first deaf and disabled person to have one. 

My communication aid is my voice.  It is like a learning a language and it takes years of practice, programming, good support and determination to become a successful communicator.  On my communication aid I have dozens of pages with hundreds of words.  It takes time to say the simplest sentence.   So I need people around who encourage me to use it as it is physically and mentally hard work.  I also need people to give me time to talk.  This speech took hours to write and programme.

My own journey started when I was actually 2 years old.

My parents were very committed to my communication and spent hours cutting out symbols to put around the house.

Getting the communication aid was the best thing they could ever have done for me.
Without it I feel I would lose my life. 

It gives me the ability to say how I feel and to discuss my emotions, what is happening in my life, to have opinions, to be able to discuss topics, it keeps me safe from abuse, it is vital for my mental health.

I employ a team of 9 Personal assistants and I interview, recruit and induct each new PA.  My aid is vital to this. 

I went through mainstream education and have a level 2 in health and social care.  The aid was carefully programmed to assist me and thanks to helpful staff I was able to be included in all the lessons.

I use my aid to chat to new people especially if they are good looking guys, to plan my travels, to go for job interviews, to ask for a drink at the bar and to share news with friends.
I can also access the computer, write word documents, use social media, use environmental controls and use a phone with it.

The communication aid costs around £10,000 including the insurance.  This has been partly funded by health, education and social care.  It needs a mounting system and ideally wheelchair services, occupational therapy and speech and language therapy should all be involved.

Some of the challenges have been – few local specialists and lack of Speech and Language Therapists with the expertise.   My own area has been very poor in supporting my AAC other than a technician there was no one around with the knowledge.  There are few communication aid users in Calderdale which is such a shame as I see lots of young children who would benefit.   Luckily my parents have worked really hard to understand Augmentative Alternative Communication and has helped me a lot.

Many people have little awareness about alternative communication. I find that people are nervous to communicate with me, they will speak to my Personal Assistant and sometimes even ignore me.  Because it takes a long time to make a sentence I often get left out of conversations.  This means that I feel isolated and a bit fed up at times.  Some people treat me like a child because I don’t have speech.

English is hard for me and other AAC users as it is not our first language.  This is a real barrier to achieving in education and passing English exams.  I have had problems recently with a college who failed me on my English and did not have the awareness of AAC and did not meet reasonable adjustments.

There are times when the communication aid breaks down and this is frustrating.  Sometimes I can be without my aid for a few weeks and this is extremely difficult for me. 
Children and young people who have a speech impairment need encouragement, motivation and support to use their aids.  Talking does not just happen!

One of the motivators for me to use my aid has been 1Voice – Communicating Together.  A charity that supports families whose children use communication aids.  As I grew up I have met some inspiring disabled people who use aids and who are role models who attend the events.   I am now a role model for 1Voice.  This has made a big difference to me.

It is my human right to be able to communicate and yet there are very many young disabled people out there whose parents and schools are unaware of the importance of communication.  Most of these children never receive an aid.

I think all disabled children and young people have the right to communicate and have their voices heard, and I would like to see the government do more to support them so we can be involved in our own care, stay safe, be in control of our lives and make our own choices.

If you are interested and would like to see my aid come and talk to me later.  Thank you for listening.

Monday, 14 September 2015

My bad experience at Northern College

Last December I was interested in the Social Sciences course at Northern College so I went to visit the College. I went to meetings with the College many times and in June I went to a try a course with living independent for 5 days, I really enjoyed it. 

My parents spent a lot of time planning for me to go and join the course and live independently at the College whilst I was away travelling. I have had some PAs leave because I thought I was going to college in Barnsley in September and I also had 2 new CSWs join. I just got back home and a few days later I was having an interview for a CSW with a lady from Blackpool and a lady from Oldham. I found out Social Care wouldn’t fund my independent living and wanted me to travel to Barnsley and back each day but that the Education funding was fine and that I could still go, as long as I could do the travelling.

At the last minute on the Friday I got a letter from Northern College for me to go to in that coming Monday and Tuesday. I went to do an assessment and have an interview at the College. It was such hard work having to do 2 English exams in full English. On Wednesday evening my parents told me that the College had called and said that I had not been accepted on the course. I was shocked and so upset. On Thursday morning my 2 CSWs called Northern College and asked why I hadn’t been accepted and they were told that my English wasn’t good enough.


I feel discriminated against because they don’t understand about me being Deaf, that BSL is my first language and that I have to translate to AAC on my Dynavox. I hope that they understand and change their minds.

Wednesday, 22 April 2015

My interview with Izzy Thomas!

On Thursday 16th April I had the opportunity to interview lovely Izzy Thomas. For those don't know who she is, she is a 22 year old pop/rock artist from Hull but touring the gig circuit. Her music is brilliant! 

The interview was in a bar in Leeds called Milo's Lounge. She was peforming there that night. Unfortunately, due to the loud music, it's a shame I won't be able to post the video as you can't hear my dynavox. Next time, I hope to interview her and post the video on YouTube. I have typed up the interview and posting it here for those who would like to read about it! 

Interview with Izzy Thomas 


Nadia: Hi my name is Nadia Clarke, I’m 23 next week, oh no I’m feeling old!!


Izzy: I’m 23 in June! We’re the same age!


Nadia: I love going to concerts and festivals and I recently interviewed the Dunwells.


Izzy: I played with their band before! At Oakwell Festival in Cleckheaton.


Nadia: When was that?


Izzy: Last July.


Nadia: It was brilliant meeting them, they were really nice. So with me today is Laura – my interpreter and Mel the filmmaker. My first question is when I was growing up, I liked S Club & and the Spice Girls but now my taste in music has changed, I like Ed Sheeran and George Ezra. What did you  enjoy listening to when you were younger and how has your taste changed?


Izzy: Oh yeah definitely, I changed my mind a lot. I went from liking Michael Jackson to Destiny’s Child and then I loved Greenday!


Nadia: I liked Greenday too!


Izzy: I love Billy Joel – (the main singer in Greenday)


Nadia: Crazy that I liked him as well!


Izzy: I’ll fight you over him!! Haha.


Nadia: (Nadia laughing) my second question is: What has been the main highlight of your journey so far?


IzzyErm, ooh I don’t know!? I’ve played so many gigs, it’s hard to pick my favourite! One thing I have loved is having my song ‘Sell your Soul’ feature in a film!


Nadia: Wow what is the name of the film?


Izzy: It’s called God Save the Queen.


Nadia: I’ve seen the trailer! I will keep an eye out for the film. My next question is where do you see yourself in 5 years?


Izzy: I want to be playing bigger venues! I want a record deal and basically tour outside the UK. I want to be successful doing something I enjoy and making good money!


Nadia: Yeah I think those are good ideas. Who has inspired you both musically and in your life?


Izzy: Joan Jett. I admired her because when she first started out, she was turned down by several record labels but she kept trying and didn’t give up and then she released her iconic song – I love Rock and Roll. Who has inspired me musically? I would say Michael Jackson, Joan Jett and then for her strong voice - Christina Aguilera.


Nadia: great! What can you imagine doing as an old lady?


Izzy: You know what, knowing me, I can imagine still going out wearing fishnets and partying when I’m older and hopefully just enjoying life.


Nadia: That’s funny, same as me!


Izzy: I would love to still be singing!


Nadia: Thank you Izzy, it has been great to meet you! Good luck for the future I am so disappointed I couldn’t get upstairs to your gig. I needed to find some strong hunky men to carry me! But I’m sure next time I will be able to come and we will meet again.


Izzy: Oh I know, I felt awful that you couldn’t come up the stairs! But hopefully next time will be at a bigger venue and if there are access issues – I will get my band to come and help you


Nadia: Oh thank you!


(Izzy signed thank you back)