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Trustee's story: Sue Turner

26 January 2021

A woman sitting down, laughing

Sue has been a part of the Sense family since the late 1980s when she attended a Sense Family Day with her two sons who were born deafblind and with complex disabilities. She became a trustee for Sense and Sense International in order to share her story and make a lasting impact for the people that needed it the most.

Now leaving her role as a trustee, Sue’s reflects on her time at Sense International.

Sue's story

“My first interaction with Sense was in 1988 when I was forced to go to one of their family days by son’s visual therapist. I say forced because, for me at the time, it was terrifying. Taking my whole family away to an event was very stressful, but it was just the most amazing experience and I have loved Sense ever since.

In the mid-1990s, I joined the Sense Council so that I could help the organisation that helped me so much. During one of those meetings, Rodney Clarke, the CEO at the time, raised the idea of having an International section of Sense. The idea was to start off with India and provide them with funding to get them started for a year. It was probably a year later that we had another Council meeting where we met the first Director of Sense International, Richard. It was a very turbulent time, but Rodney had a vision for what he wanted to achieve with Sense International.

Early years of Sense International

The early days of Sense International were a huge learning curve but everyone involved was enthusiastic and full of energy. Seeing how people around the world supported people who were deafblind or had complex disabilities was a huge shock to me. There was some wonderful support happening around the world but in some parts, those with disabilities were left completely isolated.

In 1998, the first conference on deafblindness was organised in India, and Richard asked me if I would talk about my experiences as a mother of children with deafblindess.  I had never done anything like that before and I was terrified, but I knew that it was an important thing to get across.

The whole experience was so interesting for me because I had never been to India before and, despite there being so few services for deafblind people, everyone had so much hope. We would go out to visit families and the whole village would surround us and want to speak to us. It was the opposite to the UK where I had gone through periods of feeling isolated because of how the public reacted to my family. There was still a lot of inequality in India, but the people were so open.

In India I spoke at a conference just for children and families followed by another one for health professionals too. How the organisation in India has come on from there is incredible.

Sense International in Romania

Early in the life of Sense International, I was also asked to visit Romania. The work that was happening there was really exciting but the level of care that was being provided was not on the same level to what I had experienced in the UK. It was for this reason that I took a real interest in Romania.

The journey Romania was taking to support its deafblind population was still in its infancy. When I visited schools, there was no alternative signing being used but it was something that Sense International was actively looking to change. It made me understand much more about the problems of working with a country that had little experience supporting people who were deafblind.

A few years later, I was invited back for a second visit to Romania and honestly some of the services they had were amazing. Their view on cochlear implants was just incredible as they felt that all children who were deaf should be tested for them to see if they were suitable. There were so many interesting things and some of the families were really wonderful to talk to. Their early intervention services were incredible and the way they communicated with the children was really outstanding.

During my time as a trustee for Sense International, I have managed to go to some amazing places and speak to so many wonderful people. My visit to Uganda really highlighted for me the importance of not just supporting deafblind people but supporting and educating families. In Peru, I had a fantastic time doing a trek to raise money as Sense International work had just started there. It was a far cry from my home in Kent.

Support in India

One story that really showed me the significance of the work that Sense International do is when I met one of the members of staff from the India branch who originally came from the Tamil Nadu region. She told us stories of the young people that she worked with one of whom was a young girl who was deafblind that she had found tied up.

This young girl’s family never thought that she could amount to anything and as she could not help to support the family, they had to prioritise earning money. All day, they would work in the fields and, when they had a little time and energy, they would break rocks for extra income. The only way they thought they could keep their daughter safe as they did this was to tie her up all day. As the family couldn’t communicate with her, they could not explain what they were doing.

When Sense International got involved, they immediately saw the young girl’s potential. Slowly, the team worked with the young girl and her family. The entire village was amazed at this girl’s ability. Eventually, she took over from her parents breaking rocks and started earning money for her household. Her status in the family rose because she could now earn money and slowly, she regained her independence.

Sense International has been through some tumultuous times since its inception but the work that it has done has changed the lives of people around the world. Sense has made such an incredible difference to me and my family and to be able to share that with others from all walks of life, fills me with nothing but joy. I know I am leaving Sense International as a trustee but my heart will always be there and I am excited to see how we grow in the future.”

First published: Tuesday 18 June 2013
Last updated: Friday 6 December 2019