“Just because he doesn’t speak, doesn’t mean that he doesn’t have anything to say.” These were the words of a young person living in one of our Aberlour houses about her neighbour, a young man who is on the autism spectrum and has very limited verbal communication. When I asked her to explain what she meant by this she went on to tell me that sometimes she felt that adults didn’t listen to you if you don’t speak “properly.”
“Not here” she added, “they try their best even when it’s difficult.”
As a society, we value communication through spoken and written word, and place less value on other forms of self-expression. It is my pleasure to be working on a project with Aberlour, funded by Life Changes Trust, to look at the experiences of young people who have experienced care and have a disability. The project is specifically focusing on the realisation of the rights and participation of these young people, learning about how they are supported to have their voices heard and be central in making decisions about their own lives. This can be challenging at times, requiring close observations of those who cannot speak, recording of responses and reaction in real time, and specialist communication techniques such as the use of symbols, communication aids and signs, to truly hear the dreams, desires & aspirations of these young people.
But the real focus, as with all young people experiencing care, is on relationships.
On my travels around the country, I have observed beautiful relationships between our staff and the young people that they support. Staff working hard to create communication boards to make sure their young people can choose what they eat at mealtimes, something that those of us without a communication challenge might take for granted.
A member of staff lying side by side on a hospital bed with a young person with complex health needs who became distressed in their change of setting when becoming unwell. Service managers ensuring that meetings for young people happen in their own houses so that they can participate as fully as they can in the process of life changing decisions about their care. Staff taking their young person home with them for Christmas day. All these acts, and more, build and strengthen the relationships between the young people and those around them, which in turn supports the amplification of the voice of these young people. Confidence, for those who can, to speak out is increased, and the ability to advocate for those who can’t become easier as staff truly know the young people that they’re supporting and can speak with confidence alongside them.
I have met with young people, staff, parents & carers across Scotland, to hear the stories and experiences of these young people. The results so far are a mixture of beautifully hopeful and fairly bleak. The phrases “we had to fight for..” and “we battled to get..” in relation to getting the support necessary for these young people to thrive, has been used time and again.
One young man had a particularly rushed transition between a short breaks service that he had been living at for 6 days a week for two and a half years. For a young man with complex needs, limited verbal communication and absolute reliance on routine to feel safe and happy, moving to a new house, with new staff, new young people and away from his parents was traumatic when he was only given 4 weeks’ notice before his life was due to change. He spent the final day in his Aberlour house self-restraining and “sobbing in his room” following weeks of the staff and manager fighting for more time and a more robust and nurturing transition for him. The staff came together to tell me this story, and the sadness and frustration in the room was tangible.
One phrase particularly stuck with me; “we felt like we were his family and his voice, but no one would listen.”
Our project continues until Spring 2020, and I continue to try to listen hard to these young people and in turn to help amplify their voices and stories. Article 12 of the United Nations Convention on the Rights of the Child, which turns 30 this year, states “I have the right to be listened to and taken seriously”. A wise ex-service manager of mine once said “everyone has a voice; we just need to learn to listen properly.”
Here’s to continuing to listen properly and encouraging others to do the same.
Rights and Participation Officer