August 2008 BLOG
1) The recognition of difference based on some distinguishing characteristic or mark
2) A consequent devaluation of the person
Quiggles: A made-up term (by famous sociologist, Erving Goffman) to identify all of the variations and differences of the human body which occur either from birth, daily wear and tear, accident, or illness which can be, and will be stigmatized.
You wake up one morning and suddenly you find yourself questioning why you have been working so hard fighting for a cause, when maybe you’ve just really been tilting at windmills. You’re tired, burnt out, feeling you haven’t even begun to make a difference, and you can’t help but think of the lost income if you’d followed another career path; the time not spent with family or vacations foregone - you also see the sands of time slipping away – and suddenly you go nuts. Some might call it just the usual midlife crisis – but for those who have passionately fought for a cause I think it’s different – something a small red sports car just won’t fix.
And then just as suddenly as this self doubt punches you in the gut something happens and you know you must pick up the banner again and fight on. If this sounds a bit like I might be speaking from experience, you’re either a quick study, or I’m very transparent. What grabbed me by the throat was an August 2008 Associated Press article datelined Philadelphia and headlined: “Starved, disabled girl was failed at every turn”. Danieal Kelly was back in the news. The article opened with the following:
“For days before Danieal Kelly died in a fetid, airless room – made stifling hot by a midsummer heat wave – the bedridden teenager begged for something to drink until she could muster only one word: water. Unable to help herself because of her cerebral palsy, she wasted away from malnutrition and maggot-infested bedsores that ate her flesh. She died alone on a putrid mattress in her mother’s home, the floor covered in feces. She was 14 but weighed just 42 pounds.
The nightmare of forced starvation and infection that killed Danieal while she was under the protection of the city’s human services agency is documented in a 258-page grand jury report released this week that charges nine people – her parents, four social workers and three family friends – in her ghastly death.
The report describes a mother, Andrea Kelly, who was embarrassed by her disabled daughter and didn’t want to touch her, take her out in public, change her diapers or make sure she had enough fluids.”
Did you see Danieal’s story on the nightly news, read about it in your local newspaper in California, Illinois, Florida, North Dakota, Maine, or Texas – anywhere but in Philly? I doubt it. Yet, not so long ago there was a national outcry that reverberated throughout this land – it was a reaction to the horror of an incident of road rage where a sub-human (this is the only term I could think of which was printable) reached into a car and threw a defenseless little dog to its death in on-coming traffic. My life is run by a spoiled Siamese cat and I too was one of the millions outraged and deeply saddened by this unspeakable act of cruelty; but I can’t help wondering what are we saying America when this little girl’s death doesn’t rate the same national uproar?
If I quit writing these articles or lecturing about defeating stigma (when yes, I could be spending my weekends shopping or at the art museum, or doing any of the things on my went nuts “to do” list), and if you turn away without making a vow to help defeat the stigma in healthcare that caused this death, then who will speak for a little 14 year old girl whose only crime was being born with a Quiggle who died because her mother was EMBARRASSED ? We really do have to ask ourselves, who are we if we don’t stand up against this atrocity.
We have come to see the day when stigma is not just a social hardship, stigma has killed. Last week a mother, embarrassed by a daughter with a Quiggle, was charged with murder and ordered held without bail. Although part of the greatness America is built upon is the principle of innocence until proven guilty, I’m sure you’ll agree with me, there are times when this principle is difficult to abide by.
I can only hope as this case goes to trial that hundreds of Quiggle-holders from Philadelphia will pack both the court room and the hallways of justice, and even spill out into the streets surrounding the courthouse. We need to turn on the national news and see the media squeezing past wall to wall wheelchairs, guide dogs, and other mobility aids so that they can’t miss or fail to report for the entire world to see that someone in America cares about the death of a little girl who no one would stand up for when she was alive.