The Grown-Ups

PBS Premiere: Sept. 4, 2017Check the broadcast schedule »

Filmmaker Statement

The Grown-Ups presents an unexplored community: that of adults with Down syndrome. We always talk about children with Down syndrome, yet we are not used to seeing adults, much less older adults, with this syndrome. What will they do during adulthood? What do we call them? These questions are part of a new reality: although people with Down syndrome still age prematurely, they are now living much longer lives. Twenty years ago, the life expectancy of a person with Down syndrome was 25 to 30 years; today it is 60 years. If a 40-year-old woman gives birth to a son with Down syndrome and that son lives to be 60, he will likely outlive her. In other words, we face a demographic change in this group, and the number of people affected by that change is increasing over time.

We are accustomed to seeing parents taking care of their sons and daughters with Down syndrome. It is only very recently, in the last five years or so, that specialized institutions have begun to be called upon to deal with entire classrooms of students with Down syndrome who have been left to their own devices because their parents died before they did. This is a new and growing issue, and not one to which governments or schools have devoted much thought or planning. In an earlier era, even the parents of people with Down syndrome largely assumed they would outlive their children.

I wanted to tell this story by focusing on the situation in Chile, because it's one of the countries with the highest Down syndrome birth rates. Many people with Down syndrome in Chile make it to adulthood, but little thought has been given to their needs as fully autonomous citizens. The law does not recognize their autonomy so that, among other things, their parents are allowed to sterilize them without their consent. There are no employment or educational networks established for people with Down syndrome past the age of 25. Treating them like children negates the accomplishments they have achieved as adults, and as a result they don't feel like self-determined adults who have the same possibilities as others their age. This is what I want the film to consider and convey. As director, I want the viewer to identify with the impotence and the frustration the subjects feel about growing old before their time and without a chance to experience what they want, which results in feeling that their aging process is unfair.

Maite Alberdi, Director