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”

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3 thoughts on “Are You Receiving Me? The difference between not being understood and not being listened to

  1. Your blog work is so multi-layered Bel. The way you are critically referencing your points as well as making astute and insightful links to your own journey is fantastic. Keeping pushing your agenda’s Bel it’s vital- continue exploring the voices of those who don’t easily identify in the areas you are exploring- you advocate for mental illness as a disability and I am interested in this area- we may consider as a society that we are fully evolved in our thinking about this but are we really?- I suspect you would say not- I would!

  2. I would definitely say society’s view of mental health has a long way to go, but there are a lot of steps being taken. Mind have fantastic campaigns in the public eye, as well as SeeMeScotland and the NHS Chooselife awareness campaign. What concerns me is that despite all this work, talking therapies are still not available on the NHS and there is no support whatsoever for the family and friends of those who are unwell. This would never be tolerated for other illnesses such as cancers (my father was diagnosed with stomach cancer last year and the amount of free support available to my family was incredible). Also young people going through the CAMHs system (Child and Adolescent Mental Health) are regularly not being listened to and often treated in a patronising and unhelpful manner. These negative experiences can create massive barriers to asking for help in later life.

  3. I agree Bel- it feel’s like this is providing the very foundations for your own practice, it’s hugely political of course and these observations and experiences feel very current.

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