Last night, Jon and I watched Monica and David.
Jon bought it for me last Christmas, and it has taken us this long to watch it. We both wanted to see it, but we also feared it more than a little.
It’s a 2010 documentary film directed by Monica’s cousin, and it is the love story of two adults with Down syndrome. It follows Monica and David from their wedding through their first year of marriage, filling in back story and sharing an intimate view of the families who support Monica and David in their efforts to live as independently as possible.
The movie does not gloss over the complexity of the situation, and it was that that kept us from watching it sooner. What if it brought too much to mind our greatest fears, rather than demonstrating our highest hopes? This worry has become very much a part of our lives in the last 14 months. We often feel that tension between wanting to see and be encouraged by adults with Down syndrome, but also fearing too much exposure to the challenges that lie ahead. We know challenges will come, and we certainly talk about them as we discuss the future, but we have chosen not to focus on them. Instead, we focus on how much is possible for Lina; we dream very, very big. We instinctively shy away from anything that might cause us to impose limits on her or what is possible for her future.
The movie was beautiful and ultimately more encouraging than discouraging. I have been thinking about it a lot, and about what it says to me about Lina. There were parts that were painful in their reminder of the realities of intellectual disability. But Jon and I both found plenty of hope in what these two people have found in each other and the life they are forging with a lot of support from people who love them. We could identify with and understand so much about their parents, and we also saw mistakes we hope to avoid.
We were reminded how fortunate we are to be raising Lina now, in a time of great progress in medical care, research and attitudes. In 1983, the life expectancy of a person with Down syndrome was 25. Twenty-five! That life expectancy has since nearly tripled, to 60. Tremendous strides in research are being made, including the recent announcement that scientists were able to turn off Down syndrome genes. (That admittedly brings up another very complicated discussion, which I may tackle here one of these days.) Thanks to the tireless efforts of so many in the Down syndrome community, societal attitudes are changing and people with intellectual disabilities have more opportunities than ever before.
The movie also reminded us of things that still need to change. Monica and David both had a strong desire to work, but it was a significant challenge for a number of reasons. One of the special features on the DVD delved a little more into the issue of employment for people with disabilities, and I did some of my own digging. The U.S. Department of Labor Office of Disability Employment Policy reports that in October 2013, the workforce participation for people with disabilities was 20%, compared to 68.5% for the general population. That’s pretty dismal, and I know the number is much lower for people with intellectual disabilities.
We don’t get discouraged by those kinds of numbers, though, because Jon and I operate from a very firm conviction that Lina is exceptional. Maybe we’re being naive. I suppose some will think so. But we continue to believe that by holding firm to that conviction and providing all the resources we can find, we will infuse Lina with the courage and give her the tools to do amazing things.
Perhaps more than any other takeaway, David and Monica was one more demonstration of a lesson I am still learning in a whole new way: people with Down syndrome are, always and above all, people. There is so much more that makes my child like any other than makes her different. I used to think I knew this, but I didn’t, really. Now I am living it. I know that my child, like any other, is going to forge her own path in life. I will do all I can to guide and equip her, but ultimately, Lina’s future is her own. I firmly believe that, through the grace of God, it’s going to be a beautiful one.
A Dash of the Unexpected 