Colin Farrell thinks his son is “magic” — but he’s also aware of the complexities of raising a child with a disability.
On Wednesday, the Sugar star opened up to People in a video profile about his son James, 20, who has an intellectual disability called Angelman syndrome, a rare neurogenetic condition that also affects his mobility.
“He’s bold as brass,” Colin said while describing James’ personality during the 15-minute video. “And he’s cheeky as they come, but he’s just a damn fine young man.”
Yet, despite clearly adoring his son, the actor said that raising a child with a disability is challenging and that he often feels “guilt” when he does “nice things” for himself.
“It’s so all-encompassing that if you do something nice for yourself, or give yourself a massage, or go on a little two-day road trip with your husband or your wife, you feel like you’re being irresponsible, you feel like you’re neglecting your child,” Colin said.
Now the Irish performer wants to help provide a place for parents and their disabled children to get a little self-care.
The Banshees of Inisherin star told People that he is launching the Colin Farrell Foundation, which supports adults with intellectual disabilities through advocacy, education and programming. Colin was inspired to start the foundation for a number of reasons, but one is that his son is approaching adulthood.
“Once your child turns 21, they’re kind of on their own,” he said. “All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and, more often than not, is left behind.”
But Colin said he was inspired to create the foundation thanks to the work of the “beautiful Paul Newman,” who used his Newson’s Ownproducts to fund his “Hole in the Wall Gang” — a camp for kids with serious illnesses.
Colin explained that he doesn’t just want to help adults with disabilities, but also disabled kids and their whole families, by providing them with a little respite in the form of his own camp.
Colin envisioned that the camp would have “free-standing chalets, there would be an outdoor cinema screen, and there would be a rec room, there would be a swimming pool outside, there would be a couple little free-standing wooden massage huts that the parents could go [to] and have a little bit of R&R,” he said.
“So the parents could have a good time, they could get massages, they could splash about, they could sit in the jacuzzi, and their child would be doing activities during the day, and then at night, we could all come together there’d be a meal shared and cinema under the stars.”
Parents of disabled kids should get “the support that they deserve,” he said.
“I obviously have a certain amount of means, having had a career in film for 20-plus years now,” Colin said. “And we still struggle in finding the support that James deserves and should rightfully have.”
Ultimately, the In Bruges star said, he wants all families with a disabled child to have better access to “intervention, therapeutics, [and] social environments that their child can feel like they belong within … and find a world of meaning and a life of connection.”
