Halloween is Here!

As I entered TouchBase I was very quickly reminded that it was Halloween today – there were costumes everywhere! It felt incredibly underdressed, but as I had worn dungarees that day I felt I might be able to get away with dressing up as a farmer. Just about.

I was working with the photography class today. This was lovely as I got to meet some new people, and was introduced to an art form I know very little about. I gained some confidence in my signing abilities, introducing myself to new people with my sign name. Sign is incredible useful at Sense, and I’d love the chance to learn more. Makatan, a simplified version of sign language, is also used my a lot of service users.

Our task was to move around the centre, looking for and taking pictures of all the work that’s displayed for the open art week. This included Nessie (my fave!) and the painted people from sculpture class, alongside visual art and ceramic work.

One piece we came across was a ‘wish tree’ that seemed to have been created by siblings of service users. Sense takes the fantastic attitude that it is not only the person with a disability who may need support, but their families and carers as well. This attitude is present for many sectors, cancer support care for example, but it totally absent in mental health services. I feel this is an issue that needs addressing urgently, as mental health problems such as my own can massively affect those around a person, not just the person with mental health problems.

On closer inspection of the wish tree, I read wishes that expressed frustration at society’s treatment of their siblings. Comments such as “I wish people wouldn’t stare at my sister” were common. There were also comments such as “I wish my brother could speak”, reminding us that it isn’t only someone with communication problems that is frustrated at a lack of understanding  but all those who want to have close relationships and connections with them. I wrote about this subject in more depth in last week’s theory post.

I was reminded how great computer games can be as I watched one of the participants use a game app on the Ipad she had been using as a camera. She was really engaged in the tasks in the game, and even raised her hands in a cheering air-punch when she completed the level. I’d never seen her this engaged or enjoying an activity so much, which just goes to show how games (often poo-pooed as time wasting and brain-rotting) are a creative and exciting way to engage people who may not engage easily with other tasks.

As I left, I noticed how tired I was. A small reminder of my depression and how difficult I find it being around people, especially those I don’t know well. However, I have always found my time at Sense less draining than other places, as for some reason I am much more comfortable around people with learning disabilities. I’m not sure why this is, and why it’s particularly people with learning disabilities as opposed to other disabilities, but I feel it may have something to do with both me and them having a ‘mind’ disability. This unison is something I would like to explore through research and performance in the near future.

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The Distance Between Us

Christopher: ‘You can’t test for cerebral palsy. It’s less a defined condition than a set of symptoms, the aftershock of an explosion no one hears. For Nick, that explosion came at birth’

The Distance Between

Click here to read about Christopher and Nick Capozziello. Nick has cerebral palsy, and Christopher has spent ten year documenting his brother’s life in photographs.

The Distance Between Us

Nick:  ‘I sometimes wonder why God put me on this earth the way I am,’ he said. ‘It feels like he doesn’t answer me, but I never get angry at God because if I didn’t have cerebral palsy I would be a different person’

 

Are You Receiving Me? The difference between not being understood and not being listened to

As a depressive I have often felt voiceless. Particularly as a pre-18 being churned through the mental health system, I felt like my views and opinions were at the very bottom of the list. It was unbelievably frustrating and enraging.

My loss of voice was due systems and attitudes, not my ability to articulate my concerns. What happens, then, when someone is literally unable to voice their opinions as they have little or no speech? In this blog I want to explore how communication works without spoken work. 

Sense are an great example of how people with communication barriers can be supported and given freedom to express themselves. In an article in the Scotsman, Sense explain how they focus on communication using “tools including speech, signing and gestures” but acknowledge that the attitude of those supporting individuals is vital, as “the best place to start is to just listen and respond to the people we support”.

Paddy Masefield, in his essay ‘Difficulties in Learning’, asks “why have we found it so difficult to learn from people with learning disabilities?” He goes on to add that “Not being able to speak is not the same as having nothing to say . . . People who have learning disabilities may lack an extensive physical voice but still possess sensitive powers of communication”.

These are both points I heartily agree with, but it isn’t just people with learning disabilities who may have trouble speaking. Many people find the act of talking tricky, including those affected by Cerebal Palsy, strokes, autism, motor neurone disease, Parkinsons, Multiple Sclerosis, head injuries, dementia, speech impediments, stammers and many more. In the final episode of Educating Yorkshire, the journey of a student with a stammer is tracked through his final GCSE year. His miraculous achievement of reading a poem aloud whilst listening to music had the nation in tears, (see a clip here

) but it wasn’t always that great. When asked how he feels at not being able to get his words out, he told the camera that he often felt so frustrated he wanted to bash his head in with a hammer.

This youtube video –

 – created by AAC advocates ‘Creativity matters’ interviews people whom without specialist equipment would have no means of communicating. AAC stands for Augmentative and Alternative Communication, a term that covers all communication methods, tools and equipment for those with communication barriers. This particular video looks at people who use a piece of equipment made famous by one of it’s users – Stephen Hawking. Amongst the interviewees are people who have gained access to higher education and made meaningful relationships that would have previously been impossible. One man speaks about how he was able to have his first ever conversation with his parents at 18 thanks to this technology, and another man shares how he created a business after loosing his speech and inventing a product to allow communication. 

However, being given a method of communication doesn’t help much if people aren’t willing to listen. The Foundation For People With Learning Difficulties claim that “Too often young people with learning disabilities have everyone else making decisions for them”. This is something I can relate to, as my earliest experiences of the mental health system made me feel like a bag of symptoms being passed round GPs, specialists and councillors who took very little of what I was saying on board. “What About Us?’,  a review of school and college provision for students with learning disabilities, highlighted the difficulty for students to make their voices heard;

“Young people want more of an opportunity to make their voices heard through means such as school or college councils … There is still some way to go  in ensuring that the voices of young people with learning disabilities are heard”.

So, it is not just creating ways for people to gain a communicative language or system, but allowing people to express themselves and have a voice that is important. I feel Graene Thomson, the communications officer at sense, sums things up perfectly;

“It is our duty and obligation to ensure that everyone we work with, in whatever capacity, is listened to, understood and supported; not just to have their needs met, but to reach their individual aspirations”

One to watch out for …

The Limbless Knight,  21-23 June, Island Gardens, Tower Hamlets, London

Click here for the Guardian’s coverage of the piece.

”  This new aerial and sway-pole outdoor production from the Graeae Theatre Company, London, uses sign language and audio description with performers from the 2012 Paralympic Games Opening Ceremony. Graeae Theatre describe the play as an ‘immersive theatre experience [where] you are invited to play extras in a film’  ”