“So what do you do?”
“I work with people with intellectual and developmental disabilities.”
“Oh, that must be so sad!”
Over the last several years, I have had this exchange (or a similar one) many times. Maybe it’s because I’ve lost perspective having worked in this field for so long, but I never quite understand it. I have found my career to be very fulfilling, frequently lots of fun, and very rarely sad. I am thankful to spend a lot of time laughing and enjoying time with the people I work with and the people served by our organization. While my own experience has shaped this perspective, I also believe organizations doing this type of work unintentionally perpetuate the belief that this work is “sad.” Viable nonprofit organizations frequently diversify their funding sources, and this typically involves fundraising in the community. This often includes charity events, fund drives, annual appeals, etc. We have all seen the commercials with the mistreated dogs and cats and the sad music playing. Likewise, I have seen plenty of commercials or telethons with adorable little kids using a wheelchair, looking sad, feeling left out, etc. While this is a powerful emotional appeal to a potential donor, it also portrays the people being served by the organization as objects of pity. As Paul Lengmore states, “Disabled people are not characterized [in telethons] as a social minority with civil rights but as victims of a tragic fate.” Controversially, in 1990, Jerry Lewis stated if he had muscular dystrophy, he would feel like “half a person.” Nonetheless, just two years after this statement and after protests from disability advocates, the 1992 muscular dystrophy telethon raised $45.8 million dollars.1 Again, the emotional appeal is strong: these poor kids are “afflicted” with an illness and we need your help to “cure” it.
I would like to think that a lot has changed since then, but while there has been progress, there is much work to be done. We have a responsibility as an organization to represent the people we serve in a dignified manner and to ensure that a person’s disability is not seen as a “tragic fate.” I really like the language from the Individuals with Disabilities Education Act, which states: “Disability is a natural part of the human experience and in no way diminishes the rights of individuals to participate in or contribute to society.” I have always tried to be sensitive to how we share the work of our organization. I remember a donor describing a charity event she attended where a little girl who needed a heart transplant was brought out on stage, followed by an appeal to donate. Did anyone stop to ask how that might have made the little girl feel? Is pulling your heartstrings in such a manipulative way the best way for me to portray a person needing care?
Returning to the conversation I’ve had so many times, the work that our organization does should not make you sad. It shouldn’t make you pity the people we serve. We are privileged to be able to work with so many great people and provide them services.
Instead of viewing disability as a sickness that we need money to cure, we need to evaluate our own attitudes towards people with disabilities. 1 in 5 people in the population have a disability of some kind. They are little kids, adults, me, you, or someone you love. I don’t want your pity. I want your genuine care, love, and a desire to see everyone realize their full potential. Eliminating our outdated and offensive portrayals of people with disabilities and seeing everyone as a person of equal worth is the biggest step we can take in truly making a difference.
1 Quotes taken from “The Disabled, the Media, and the Information Age,” pg. 5, edited by Jack Adolph Nelson