Content Note: ableism
Ron lives with his family – mother, father, two brothers, one of them his twin – in Israel. His life is shaped by the fact that he has cerebral palsy, meaning that he is becoming less mobile at a steady pace, slowly graduating from crutches to a wheelchair. When his mother hears of a doctor in the USA who performs an operation that could restore some mobility and slow down the effect of the condition, she is dead set on getting Ron this treatment.
Once Upon a Boy shows an entire family trying to navigate life with a disabled family member and the difficulties that means. At times the film skirts a little too close to inspiration porn territory and some things may have deserved a little more critical interrogation, but it absolutely captures the parents’ struggle with the situation.
Once Upon a Boy left me with a bit of an uncomfortable feeling and I think that it’s mostly because it is very obviously a film made by abled people for abled people about disability. Initially I thought that the film would be more about Ron, but his perspective always takes a second seat to his parents’ perspectives.
And while it was interesting to see how differently both parents approach Ron’s disability – the mother wanting nothing more than for him to be “normal”, while his father was convinced that being disabled doesn’t really have to be an obstacle – and while their struggle to still remain connected as a couple in their own right and not just as parents was absolutely touching, I wish that it had been more about Ron and how he sees the world. And it definitely wouldn’t have hurt to include the voices of some (adult) disabled people, especially disability activists, and how they see the world – basically as expert opinions to contextualize everything.
I’m not saying that the parents are doing a bad job here. They are both obviously worried about their children, especially Ron (so much so that his twin brother often has to take a step back, as is so often the case in families where attention usually isn’t distributed equally), and want what’s best for them, even if they don’t necessarily agree what “the best” might be. They have difficult decisions to make, that’s for sure. I just wish that they had more disability studies knowledge – just like the film should have had.
Nevertheless the film definitely (and probably unfortunately) reflects the reality of many families who have a disabled member, but a good amount of privilege to deal with it. It doesn’t shy away from the hard parts, either, even if it is in the end a little too much about the “bravery” of everyone involved (especially the parents). That does make it interesting to see, even if not always easy to take.
Summarizing: I’m conflicted about it, but it is worth seeing, I think.