TIP of the WEEK: The Value of Life
In May we celebrate PWS awareness. In October we celebrate Down Syndrome and Spina Bifida awareness. Is celebrate the right word? Yes, I think it is. Do we, as a society, celebrate the birth of infants who are not typical? No. But I believe that we should. Human life should not be celebrated or valued based on what an individual may contribute to society; but rather for who a person is, what he or she brings to the lives of his or her families and those that love them. Why do we assume that those born with different challenges are suffering and therefore are somehow lesser than those without “syndromes” or “disorders?” How do we as individuals define quality of life and why do we assume that our definition is correct? Quality of life is defined as having meaningful relationships, meaningful work and leisure activities that bring us joy. The definitions of “meaningful” and “joy” are deeply personal and not transferable from person to person. I often ask the people that I work with who are diagnosed with PWS what they want people to know about what it is like to live with PWS. Here are some of my favorite responses:
“I want people to know that I’m not as sick as everyone thinks I am. I feel pretty good” – Anthony age 17.
When asked what, if anything, he would change about himself, Ben, age 16, said: “I wish I didn’t have to wear glasses.” I then asked if he would want to take away having PWS and he said: “No, like myself.”
Leona, age 22, said: “It would be great not to feel so hungry all the time but you get used to it. I have a boyfriend and a lot of friends and I’m in college. I have a job. I do more than a lot of other people who don’t have PWS.”
Just as the definition of meaningful is not universal neither is the definition of suffering. We make so many assumptions about people with disabilities and one of the biggest assumptions is that they are suffering and would change if given the choice. Instead of focusing our energy on pity and trying to make people with developmental disabilities change to fit our definition of normal we need to open our hearts and minds to the idea that there is intrinsic value in all life regardless of how we define quality of life, happiness and success
Manager of PWS Services
~Shannon L. Alder