A hands-on approach to friendship
Early in his life, Lilias’s son, Fearghas, was diagnosed with Down’s syndrome. He is also deafblind. By educating others on how her son’s experiences the world, Lilias is striving for change.
We’ve been supported by Sense since Fearghas was about 18 months old. It was then that we found out he was deafblind – I remember being told the word, but I didn’t yet fully understand it.
As Fearghas grew up, his sight and hearing needs grew more complex. When he reached his teens, Sense was there to help him move through specialist colleges.
It was at this time that I started to learn more about his condition, taking every opportunity to educate myself. I wanted to understand what support Fearghas needed and how that was going to be provided to him.
An explosion of information
The moment this really kicked into gear was when I was invited to attend the Deafblind International Conference in Romania. I’d been selected by Sense to go as a parent participant.
It absolutely blew my mind. Suddenly, I realised we weren’t alone – there were other people out there like my son, and from all over the world.
There were all sorts of lectures and workshops, my brain was just exploding with information. I was excited and wanted to keep learning so that I could give my son the best possible support.
So, the next thing I did was to apply for an intervenor course at Sense. This gave me more specialist knowledge on giving people who are deafblind to have a happy and stimulating life.
After that, I went on to do a master’s degree in communication and deafblindness, focusing on friendship and isolation.
The freedom to connect
Friendship is one of the things that makes life worthwhile. Being able to choose our friends is crucial to our emotional wellbeing.
As Fearghas needs professional support, he was only able to build relationships with people who provided this to him. These non-negotiable relationships were his primary source of connection, but they weren’t friendships.
At his college, I felt there was a lack of understanding of how someone who’s deafblind experiences the world. Such impairments mean that you live primarily through touch – your world is tactile. Until people know this, they aren’t able to provide optimal support and doors remain closed.
I set up a study in my son’s college, making changes to the way that students interacted at lunchtime:
A hands-on approach: Students were encouraged to use tactile communication methods, not just verbal.
Mixing it up: Everyone sat at shared tables, with a different group
of people each day.
Working together: At the end of lunch, everyone helped to tidy
up – washing and putting their plates away.
After two and half weeks, Fearghas had made new connections. Instead of keeping his eyes down, as he normally would, he was reaching out to see if his friends were sitting next to him. His cheeky laughter could be heard in the canteen and lunch became a joyous experience.
What I want people to know
We need to increase awareness of how people with complex disabilities interact with the places and people around them.
It’s vital that we give everyone opportunities to participate and connect. That means thinking of the world in tactile terms, not just visual and auditory. That way, all of us can have the freedom to connect and to make friends.
Inspired by Lillias? You too can make change happen.
By getting involved in our campaigns, you’ll be adding your voice and making a difference to the lives of people like Fearghas, who are living with complex disabilities.