By: Sam Melden
Recently I was in a conversation where someone referred to various issues facing their community as “quality of life” issues. These were issues like the condition and beauty of local parks, the reliability of trash and recycling services, the local unemployment rate, various economic growth indicators, and the metrics related to public schools.
Quality of life. Three simple words, with one strong implication: certain lives in certain places experience more quality than others. In this instance, the determination of quality was predicated upon external factors. No one was saying that any one individual was less worthy of such a level of quality, it was more about the governing and leadership bodies who make decisions being committed to creating a better world for its citizens.
On September 2, 2015 my wife and I, expecting our third child received the news that our baby had a condition called Spina Bifida. While I couldn’t even spell it at the time, I grew to understand more and more about this neural tube defect that would significantly alter the way my little girl would interact with the space around her. When the doctor gave us the news though, he used this familiar phrase; “quality of life.” He said our child “will have a low quality of life.” And he said it over and over. Since then, we’ve heard this from so many people who have received a similar diagnosis. Quality of life were the words used to describe the implications of this diagnosis. “Your child has spina bifida, and kids with spina bifida have a low quality of life.”
This was a discouraging start to the journey of welcoming our 3rd daughter into the world, to say the least. We were confused, worried, afraid, and now we were wondering what our lives would become.
Today, however, when I show most people a video of a little 3 year old girl smiling on the beach or spinning around to a song in the kitchen, they are filled with joy. And, to be honest, I have often referred back to that “low quality of life” diagnosis and wondered why we are stuck with such limiting language to describe the ways some people navigate the world around them.
One of the main thrusts of the “Disability Dialog” campaign is to challenge the way we think of those often referred to as “disabled.” This campaign points out, that the truth is, so many people are actually “disabled by society.” There are many ways we define what brings quality to a life in our culture today. But when we really slow down and think about it, the ways mark progress don’t apply to a large amount of people in our society. It seems as though not everyone truly qualifies for a certain quality of life.
If someone learns differently, communicates differently, walks or talks differently, shouldn’t they qualify for the same quality of life as anyone else?
My understanding of the concept of equality is all about how we answer this question: who qualifies for quality? When we talk about quality of life issues if someone doesn’t qualify for any reason, they have in essence been disqualified. And when that happens, all moral citizens have a responsibility to ask why?
This is the question in front of all of us: how can we work to create a quality of life where everyone qualifies? How can every leader, and every citizen in this community step up and answer this crucial question. That is what I am committed to, and that is why I am thankful for this Disability Dialog Campaign and the hundreds of other leaders in this community who are in this fight as well.
Hamilton Lombard, Demographics Researcher UVA