EUFAMI founder Gusta Frooninckx: “It all started when my brother turned 18”
91-year-old Gusta Frooninckx is the founder of mental health associations EUFAMI and Similes Flanders and is also an artist. She invited Secretary General Aagje Ieven and Communications Officer Paul Nolan to her residence outside Brussels to talk about her career.
Beaming, sprightly, and with the kettle on, Mrs Frooninckx invites us into her living quarters at the end of a long corridor at this senior’s residence in a small Flemish town of Wezemaal outside Brussels. A nurse enters the room to arrange the bunch of flowers we bring and pour the tea. “It all started when my brother Hub turned 18,” she tells us as she sits surrounded by the colourful landscapes and flower paintings that have been her outlet since she retired, and which now make this room her home.
The response to her brother, Hub Frooninckx’s Down Syndrome, was where it all begun as she recalls events that took place 50 years ago. “Back then, if you were a child with a mental or learning disability, there was nowhere for you to go when you turned 18. They didn’t have institutions specific to adults with a mental disability and he was, from one day to the next, moved to a psychiatric institution for adults. People with learning disabilities and people with mental illness all lived there together.”
“The stigma was enormous, there was so much shame.”
When they got the phonecall, her parents were devastated, she recalls. “No one had informed them of the pending move, and they had to drive across the country to see their child in what people called the ‘loony bin’ — the stigma was enormous, there was so much shame.”
Gusta visited often. She saw the less than ideal circumstances in the institution, and most of all, she saw the pain of the parents, brothers and sisters, and sometimes children. And that’s when the idea started to do something for them. There was no place they could get information, no one would listen to them, they felt excluded. She started a local group and a few of those local parents’ groups banded together. Similes Flanders was born with Gusta as its first president. She was professionally active in youth work, and used the political contacts she had through her job to lobby for the case of the family members and their loved ones. “I would always say, ‘imagine if it was your child, sir, what you would want for your child?’” As practices evolved and residents were separated into more specialised care facilities, Similes became the organisation caring for families affected by mental ill health.
“Imagine if it was your child, sir, what you would want for your child?”
“We knew the people in the francophone sister organisation and they, in turn, had contacts with UNAFAM in France. We met up in a small office in Brussels Central Station to discuss bringing all those familes struggling with the same problems together at a congress, so that their voice could be strenghtened, and to issue a statement”. It was to be a cry for help on behalf of the many families affected by this issue, who were invisible, and silenced. “And then we found out there were organisations like ours in the UK, in Ireland, in Germany, all over Western Europe”
The statement became the De Haan manifesto, presented at a conference attended by Belgium’s Queen Fabiola alongside more than 300 people from 16 European countries and representatives from 3 other continents. Gusta beams with pride at our mention of the photo that’s still in EUFAMi’s office, 25 years after the federation was founded by these organisations at their second congress in 1992.
It’s the big achievement of her life, but she speaks with equal pride about her paintings. They cover three of the walls of her room in the seniors’ residence and she rings a nurse to help her unpack and show us a few more.
“The one with the willows, even before I had finished the ground layer, I knew, and the teacher said it too, “this is going to be a good one. I would never part from that one” she says. She has only ever sold her paintings to fundraise for Similes or for EUFAMI.
“The sunflowers, he said, they represent the joy, because caring for someone also brings you closer together”
“At one of those exhibitions”, she tells us, “I met a psychiatrist who couldn’t choose between my sunflowers, and my wisteria. He said the wisteria’s blue tears reminded him of the sorrow of family members whose loved ones suffered from these illnesses impacting so many lives so severely. The stigma, the shame, the exclusion, the sense of loss, the grief.”
“But the sunflowers, he said, they represent the joy, because caring for someone also brings you closer together. And you know what? He bought both of them!”
Gusta confirms “there is nothing more rewarding than caring for a family member, even if it is very, very heavy sometimes.” Her decision to take up painting was in part a way to deal her grief after Hub passed away and helps to keep his memory alive. For EUFAMI’s 25th anniversary exhibition, the painting she has chosen to donate, is one that unites sorrow and joy: a tearful wisteria in bright sunny yellow.
She explains she painted it at home, where — for many years — she also cared for her sister with terminal cancer. “I would sit in my veranda, from where I could see this curious yellow wisteria in the garden. It should be blue, but it’s not.”
Interview carried out by EUFAMI Secretary General, Aagje Ieven with special thanks to Willemien Schut for additional information. Photos by EUFAMI Communications Officer, Paul Nolan.