Creating a Life with a Care Team

When you need to put together a care team to support your daily needs, it can be a tricky balancing act of finding the right fit. You’re not just hiring staff, you’re not just looking for people who are capable of doing the work. You have to think about the kind of people you want to let into your private world, who you’re comfortable spending time with, who you and your friends and family will have to socialise with. You need people who will understand you from every angle, and take on whatever you’re dealing with in your daily life, as well as have the common sense not to patronise you, or do too much for you, encouraging your independence wherever possible. It’s a tricky business, but it ends up being a lot of fun when you do find the right fit.

I feel so lucky to have met and worked with carers who have become great friends as well as employees. We often share the same sense of humour, banter, jokes, and similar interests. My first full-time carer, Zack*, came to work with me when I finished school and we loved going to athletics club and football training together, tackling my physio and fitness through sport. We went on holiday together, and the furthest we got was Australia where we went to see crocodiles at the zoo. We had a lot of fun, as well as ticking off the usual list of daily chores like getting me out of bed, washing, and having breakfast, but also supporting and listening to me create music and write.

Then there was Dan*, who was my gig and football buddy. We used to watch Chelsea play at the Bridge every month, and he took me to see a lot of bands play live; including Blink 182, Paramore, Less Than Jake, and Reel Big Fish, just to name a few. Dan was also my tech wizard, who helped program my communication aid computers with software, and music, and all the stuff I needed. My team often have their own individual skills that makes them an expert of a particular area of my life.

I also work with Creative Enablers who double up as care staff when I need them to. Stacey* helps me with the career side of my life, supporting my work commitments and networking. We are both creatives, writers, and artists so we share an interest in the cultural side of socialising. We go to poetry and spoken word events, the theatre, and Edinburgh Fringe festival for a week every year, seeing as many shows as we can fit in, inspiring our own work with what we see.
I’m looking for more staff to add to my amazing team. Please read on if you want to know more about the job, and/or share this blog with your friends who might be interested in a very fun and rewarding role working with me.
Title: Full Care Team | Haggerston E8 and Poole, Dorset
Location: Haggerston and Poole
Wage: £10.00 to £15.00 gross per hour depending on experience
Driver required? Preferably but not essential
Preferably:  Previous experience supporting a young client with cerebral palsy, manual handling
Preferable: AAC communication, basic cooking
Happy to assist with helping with moving and handling.
Happy to assist with a physiotherapy programme.
Happy to clean and tidy various rooms.
Start Date: ASAP
Days & Hours:
Full time: Up to 3 x 24 hour shifts per week, working as part of a 24/7 team.
Part time: Up to 6 hour shifts, working in the team.
Accommodation: Own bedroom and shared bathroom whilst on duty if you apply for the 24 hour shifts.
I’m 24 and have quadriplegic cerebral palsy. I’m dependent on others for almost all of my needs. I have a huge passion for life, working as a poet, theatre maker, workshop leader and director of a large not-for-profit theatre. I am non-verbal, using eye gaze technology to communicate and drive a power chair using head switches.

The role will involve assistance with all aspects of personal care and all aspects of daily living; you must be confident in manual handling, providing personal care and administering medication. I spend a lot of my time going to the theatre, concerts, music gigs, and sport matches. An enthusiasm for creative arts and/or sport would be an advantage. This job will involve working between Poole in Dorset and Haggerston in London, with lots of travel both in the UK and sometimes abroad. The ability to confidently navigate a step-free route across London is important. The family home, in Poole, has a hydro therapy pool and assistance and willingness to support me in the water is also essential.

I have a work PA and use Creative Enablers in theatre spaces and rehearsal rooms. You will have to be flexible to accommodate the change-over times to fit in with work and location requirements.

This job will suit a motivated, proactive candidate with plenty of common sense who has some experience supporting a client with a disability and understands the importance of promoting independence.

If you are interested in this fantastic opportunity message @TheShoutingMute with a cover letter and CV, or ask any questions you have regarding the role.

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We are on our way to Doing Things Differently a festival in Bristol celebrating equality in the arts.
*Names have been changed to protect privacy

Communication Matters 2019

I was invited to be a keynote speaker at the Communication Matters Conference at the beginning of September, to pass on the Alan Martin Award I won for my Contribution to Creative Arts at the conference in 2018. This year, I was asked to write and give the plenary speech, which was an incredible experience and an honour to do. I’ve shared my speech at the end of this blog post, if you want to read it. I hope I made a change to some of the people listening and, if you were at the speech, this is your opportunity to ask me any questions you might have. Comment on this post with your question, and I will answer it.

It was an incredible conference this year, very well programmed and thought-provoking. I listened to the other keynote speaker, Karen Erickson, give her speech. She talked about literacy and special edition with communication aid\AAC users. She said that everyone, whatever their ability, should be able to learn English. If we can learn how to use symbols, we can learn 26 symbols that can be combined to say anything you want – the 26 letters of the alphabet. We learn when we’re challenged, so we should push a bit further all the time. A lot of what she said actually mirrored my journey with literacy skills growing up, not moving on from symbols until I actually left school. So AAC users/communication aid users, here’s a tip for you – start spelling and typing with a qwerty keyboard as soon as possible. You can do it.

I also went to the AAC Users’ Annual meeting. The subjects discussed were AAC reliability and battery life, which I agree are issues I do face, but we use computers at the end of the day and computers get old and sometimes break but not as much this guy was saying. He had a replacement computer every year, and that is not on. Another subject that was discussed at the meeting was if there would there be interest for an AAC users workshop, to explore the arts for a day or a weekend. Would people be interested in that? We could put on poetry sessions / performances, Eye Gaze music and painting workshops. If you are an AAC user would you be interested in this, for a day or a weekend?

Here is the plenary speech I gave as a keynote speaker…

Hello everyone. I am Dave the Shouting Mute. I am called The Shouting Mute because my mum couldn’t shut me up. I am a poet, a performance artist and an activist for disabled people, especially communication aid users. I believe that the unexpected people in the room have the most to say but they are often not listened to. But they have a mountain of knowledge from listening and observing all the time.

Now, I will tell you the truth, the first performance I did, using my communication aid, I hated. I was switch scanning at the time and I know that I missed every cue. Afterwards I actually didn’t perform with a communication aid for about 5 years. I kept on performing though, through movement and acting with voiceless and I performed everything with voiceless. I danced my way around the stage to communicate and I loved it. I even danced in Brazil and then at the Olympic opening ceremony on Weymouth Beach.

Whilst this great performance journey was going on, in about 2010, I tried out eye gaze technology properly and it changed my life. I think my first eye gaze was an Eco 2 with a point. Eye gaze technology was a creative game changer for me in a few ways. I could write faster and more easily so I could participate more. I wrote my first poem and then I discovered writing just for myself. Night after night after school. I just couldn’t stop myself. I could write my own stories and save sentences I  wanted to share or just write for me. It really really changed my life and the way I thought about communication.

I was still performing and doing incredible things. Then at about the same time my school was involved with another project called Seen but Seldom Heard Voices. With them I performed my first poem in public with my Eco Point live on stage. From there my love for performing live and creating just grew and grew with and without my communication aid.

In 2013 I left school and that’s when my creative journey really took off. It all came together with Touched, a piece of poetry I wrote for Diverse City, for a performance on the South Bank for the Unlimited festival. My computerised voice boomed out along the waterfront, drawing people into our show. People were stopping and watching us, cheering as a group of disabled artists enthralled them. Touched made me who I am. Diverse City could see what I did not see and had not believed possible. They saw me as an artist, a writer, a performer and a potential director. Diverse City believe that everyone has the right to create theatre and the right to watch theatre and they asked me to join them.

So now I want to make sure communication aid users are welcomed into the arts in any art form that they choose. By working inclusively and creating a culture whereby AAC users can participate, a bit like how deaf people have very successfully become enabled to perform and to sign on stage and access performance in a way that is creative and accessible. Many Theatres have relaxed performances that encourage everyone to come and enjoy the show and where it’s ok to shout and scream, cough or jump about, even spit or swear, and have noises going off because of computers or technology, but that doesn’t  worry anyone whether they are performing or watching.

Communication for me is more than just words being spoken by my computer. In 2014 I wrote a poem for my drama group for the first time. They took my words and turned it into a performance full of emotion and colour. It was like a bomb exploding in my head, words and performance merged together into an art form with music and dance and BSL all combined. Everything fit into place. It had taken years so don’t let your first experience of something put you off.

Yes, I still miss a cue sometimes, but I can write and share my work and ideas with others and listen to people and make sure everyone is heard. Communication aid users need to have creative expression and use their voice in every way. From physical movement and shouting, to typing a story. Even how you dress is a form of communication. Use that to tell your story. Use that to say I am here. This is me. The fact that I can’t do something the same way others do it doesn’t really matter and I am still communicating in every way. All arts are a form of communication. Writing can express so much of a person through a creative out blast. Painting, music and performance can all do the same. We should use art as a form of communication to get out what we are all trying to say.

I am going to read some poems now, but after I want to take a second to think about the messages behind the poem for yourself. This first poem is Be Cheeky Be Naughty Get Us Into Trouble. I have a walking frame that I slowly under-use as I get a bit older and if I am honest lazy. This is called Be Cheeky Be Naughty Get Us Into Trouble. It goes like this.

Be cheeky, be naughty, get us into trouble. Let’s ram into mats and let your special friend ride our back. Let your mate Terry spin us around. Be cheeky, be naughty, get us into trouble. Let’s run around the track, you need to run again. Let’s let them hit balls at us. Do wheelies, put your feet up, scuttle and skate. Be cheeky, be naughty, get us into trouble. Let’s splash through puddles and mud and put paint on my wheels again. Let’s put a hose pipe on me and have a water fight. Let’s dance, go on stage, get too close to the edge, find a wig, a guitar, dress up as a rock star. Let’s hide and run. Play grandmother’s footsteps, see the waves and run away from mum with the dog. Be cheeky, be naughty, get us into trouble.  Let’s kick balls. Let’s jump up and down, bat off hockey balls. Let’s run to class one minute late again. Push the boundaries. Get me out. Out with the air filling up our lungs. Some other time than the physio hour. Be cheeky, be naughty, get us into trouble again.
This next poem is called Grow Up. This poem is about a friend that moved away. It goes like this.

Grow up. Grow up. We are older now. Grow up. Grow up. I don’t like you anymore in that way. Grow up. Grow up. I just asked a question. Grow up. Grow up. I just want to be friends. Grow up. Grow up. We don’t need to play games anymore. Grow up. Grow up. I was just wondering. Grow up. Grow up. I want you to understand that I haven’t got friends like you. Grow up. Grow up. I am moving on but I don’t want to not know you. Grow up. Grow up. I just want another sister and brother, mine have gone away, you are my sister from another mother. Grow up. Grow up. I need you to be there, I am alone. Yes I am doing fantastic in life but that doesn’t necessarily bring friends. Grow up. Grow up. I miss you…
This next poem is a love sonnet to my one true love.

Chocolate yummy! Chocolate scrummy! Chocolate deliciousness! Chocolate in my belly please, preferably right now. Chocolate, I eat you at every opportunity. Chocolate, I make no discrimination to whatever form you present yourself in. Chocolate, milk or white, I will always desire you.  Chocolate, you are the shake to my milk. I am sorry that I sometimes go strawberry pink. I promise that I will commit to you now. Chocolate, you are always on my pancakes, every Saturday morning. Chocolate, cooked as cookie dough. That is a sight like the sunset. Chocolate, you go perfectly with every pudding. Chocolate, you always thrill me when you are near. Chocolate, you are like fags to me. I can’t get through a day without you. Chocolate, I love licking your cake beaters, and the bowl if I am lucky. Chocolate, I love soft brownies. You are a square of heaven. Chocolate, you are saucy. I will enjoy you every second. Cake, bars, ice cream, buttons, and in everything which you kiss. I love you on my lips. Chocolate, I would buy you flowers every day. Chocolate, we could go for romantic walks on the beach. Chocolate, we can go to Belgium together. Chocolate, we could settle down and get a flat together. Chocolate, we could get chicks together, they can lay big chocolate eggs. Chocolate, you are the love of my life. Chocolate. Will you marry me? I don’t think I will ever find another partner like you.
The last poem is The Shouting Mute.

The shouting mute is fighting for a world that has difference, respect and peace as it’s only agreement. The Shouting Mute gets his point across, The Shouting Mute lets people know what he thinks and feels, The Shouting Mute considers and then shouts. The Shouting Mute talks to you like a squirrel but with a tigers roar, The Shouting Mute sees emotions in people. The Shouting Mute knows to listen with his eyes and ears before shouting. The Shouting Mute talks to you with his body. The Shouting Mute talks to you with his head. The Shouting Mute talks to you with his eyes. Watch a mutes body and listen to their talking heart. Saying the dreams, saying the missions, saying the opinions. The Shouting Mute is fighting for a world that has difference, respect and peace as it’s only agreement. The Mute does not stop talking. The listeners do not hear the mute’s words. Listen in, then you will hear the mute speak everyone’s unique language. I am a mute but can you hear me? Yes you can. The quietest people in the room are always the loudest.
Thank you for having me CM.  I have been Dave, The Shouting Mute. Like me on Facebook and Instagram @theshoutingmute. Thank you very much.

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Edinburgh Fringe Festival 2019

Edinburgh Fringe was stunning. Show after show. Day after day. Night after night. Funny side stories too.

My powerchair broke and I had to go into my manual. Top tip, always ask for your P.A. to push because your friend will always be the worst choice. To be fair we were late for a show and rushing around but that’s no excuse. They pushed me into every pot hole going.

I saw a show called Lobster, an insight into modern dating, excellent entertainment and hilarious. It needed a message though. There were some stunning moments to the performance but it lacked substance to the story. Where the performance could have said so much more about modern dating, and whether it’s good or bad. She didn’t comment enough on life and what it means to date today, but Gemma had a very smart marketing tool for the show – to go on a date every day of the Fringe. I went on a date with Gemma and it was fun. She is a clever person and we went for a drink, then to dance at the Scottish Ceilidh. She was great fun and it was a great date.

Here are some shows I recommend you look out for, if they go out and about on tour –

Who Cares was a fascinating show about young carers. It was quite hard-hitting but an absolutely beautiful play. It pulled on our heart strings and made us aware of what young carers go through, and the issues around being a kid with responsibilities. The piece followed three characters going through their individual journeys of  life as a young carer. It brought up some serious issues around caring when you’re young, and told us that there needs to more awareness of young people looking after someone at home.

Rosie Jones: Backward. Rosie is a disabled comedian, who we also saw as part of a live recording of The Guilty Feminist Podcast. Her stand-up show was amazing and very funny.

Fishbowl is a theatre clowning show, and an incredible must-see. It was absolutely ridiculous entertainment, very funny. You will wet yourself laughing. This is theatre at its most entertaining. The set was three very different flats on a street, with three performers living in them doing ridiculous things. The highlight for me was when a performer was trying to catch their bag blowing in the wind, and we could see it was attached to a moving pole, but you have to see it to get how hilarious that is.
Louder is Not Always Clearer, a show about being deaf, was a very good insight into communication and deafness. It was relatable but also educational into the life of a deaf person. It raised so many questions around being deaf and disability, which could be considered controversial. My only criticism would be that it felt like a creative theatrical talk and not a theatre performance, but saying that it was very enjoyable and interesting to watch. I would be keen to see how it develops in the future.
Electrolyte was a stunning musical play about mental health. It was so well-written and beautifully performed. This intense watch will make you cry.
All in all Edinburgh was fantastic, we had a dream time, and I’m looking forward to next year, but my advice would be to have everything planned to a cup of hot chocolate, like we did. Shows, times, and locations all need to be lined up so you see everything you want to see.

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Fishbowl – slapstick comedy with no dialogue, internationally accessible!

Your second chance to Grow Up!

Lighthouse, Poole is giving you another chance to ‘Grow Up and Just Love Chocolate’ tomorrow, Wednesday 10th April. Yes you really can eat free chocolate while enjoying a show of highs and lows, featuring a broken-hearted drip talking about how overwhelming his life is.

Grow up and just love chocolate shows the main character growing up and working out that he has to accept his life the way it is. We debuted the show at Salisbury Playhouse in February as part of Fest West 2019, and we are bringing it back for one night only in a special double bill with EBYA who will be debuting their new show, ‘Til We Win’. It will be a lot of fun. Come along and support us.

Tickets are £9 for both shows, the double bill starts at 7pm, and you can book tickets through the Lighthouse website or by calling the box office on 01202 280000

I will be doing a Q and A following the show so send me any questions you want answered and I will do my best to answer them all. It’s going to be an excellent night of theatre at the Lighthouse Poole tomorrow night, Wednesday 10th April.

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February was nuts

Hello there. February was a month of glorious mayhem. We launched into an intense week of rehearsals at Lighthouse Poole, with visits from some great creative consultants like Jonny Fluffypunk, Daryl Beeton, Claire Hodgson from Diverse City, and a guest audience for an open sharing which included my good friend Hugo Lucas-Rowe, and Rosie Russell from The Arts Development Company. By Friday we were ready and my debut showing of ‘Grow Up and Just Love Chocolate’ at Salisbury Playhouse Theatre was received like live fire in heaven with chocolate. I would like to thank everyone that was involved for their hard work and excellence through the week. The show was spot on. It was like magic. There will be a film of the creative process, and the show, online very soon. I particularly enjoyed the chocolate orgy ending with lap dancing puppets made from chocolate bars and mini rolls. I was a mess.

There was no time to relax after the show, because we dashed straight off to London for a National Youth Theatre Masterclass in play writing and directing. It was literally life changing and I have decided to move to London again to hopefully rock the world with my immoral mind. The course leader Benjamin Salmon was my play writing guru for the week, and he taught me a lot. I wrote a scene about death and alcoholism, which are both lovely subjects, and tested my director and professional actors when it came to bringing my script to life. It was strange to realise that I was the only one there that has been to a lot of funerals but I think I should use that. Death is the most powerful thing on earth. So, sorry but I will always write about death.

Last week I performed Terry Riley’s ‘In C’ with Extraordinary Bodies at the Birmingham Town Hall. The British Para Orchestra played the piece, and we improvised poetic movements and aerial displays in front of an audience who were free to move around the space. It was an incredible experience, for all of us, and I will admit that I forgot how much I enjoyed performing. I felt very privileged to perform with Extraordinary Bodies again, and it was definitely worth the travel to Birmingham even after everything we have been doing elsewhere. It was magical.

We are starting to figure out a schedule in London, booking courses and exploring new opportunities. I’m open to any suggestions of projects and courses to get involved in, so let me know if you have any ideas…

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Chocolatey Progress Update

Hello Folks. Grow Up and Just Love Chocolate is going ridiculously amazing and I am actually not lying, not that I would ever lie. Well maybe I would, but not about that. The set is being made as we speak. The designers have been doing an amazing job. And we will have a pinata full of chocolate. #Yay.

On a boring admin note the schedule is done, and I love it that I can say that. All I need to do now with our amazing team is direct the show, which will be extraordinary and chocolatey. I will probably have to eat about 3 tons of chocolate on Friday, which will be delicious, and it’s always interesting to send my PA out to buy weird stuff like £130 of chocolate. I know that my maths doesn’t add up there, but I’m not a mathematician. I’m saying that I’m buying and eating a lot of chocolate. Which will be gorgeous.

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Rehearsing for Grow Up

My Valentine This Year…

The debut performance of ‘Grow Up and Just Love Chocolate’ is almost upon us, and we are very excited to go into rehearsals with a fantastic script. Well I am saying it is a fantastic script because I wrote it, but to tell you truth I don’t have a clue. Other people have been telling me it is in a good place but they might be lying to my face, so who knows? Come and see it for yourself and tell me what you think.

I’m looking forward to performing at The Salisbury Playhouse and seeing what the other two plays are like in the triple bill. It’s going to be a Valentine’s treat on the 15th February, perhaps the perfect setting for a date, especially if you are single like me and believe that chocolate is basically a god. Which it is. You can look it up. Chocolate is the food of the gods. Plus I read somewhere that it is better than a snog so win-win, but come to the show, and we’ll explain it better.

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