Disability vs. Chronicity: Bloggers Unite for National ICI Awareness Week
I'm writing today as part of Bloggers Unite, which is an off shoot of BlogCatalog. Bloggers Unite is an attempt to harness the power of the blogosphere to make the world a better place. By asking bloggers to write about a particular subject on a particular day, a single voice can be joined with thousands to help make a difference in raising awareness of a particular issue, in our case, ICI.
I've chosen to write about chronicity vs. disability because it's an idea that's been rattling around in my head for a few years now. Laurie Edwards, of A Chronic Dose wrote a similar post recently, titled Illness vs. Disability. In it she says "people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness." This is an important distinction. Her post goes further into the semantics of the situation, and she promises we'll hear more from her about it.
The basic premise of this blog post is that our current definition of disability does not include chronic illness and pain, and it should!
First, here's my take on the semantics. I decided to title my post "Chronicity vs. Disability" because of the work of Jennifer Jaff of Advocacy for Patients with Chronic Illness, Inc., on The Chronicity Project.
From The Chronicity Project:
... The Chronicity Project has two main goals: to redefine the definition of "disability" to include chronic illness; and to ensure that public policy debates about health care and health care finance reform include the voices of patients with chronic diseases.
When the disability rights community did the incredible work they did to arrive at the Americans with Disabilities Act (ADA), they and Congress were thinking about people in wheelchairs and other visible disabilities. However, we know that the ADA was not designed to help patients with chronic illness who need flexible work hours, work at home, and other accommodations that affect our presence in the workplace. In fact, the courts have interpreted the ADA to provide NO protection from termination of employment due to absence from the workplace. This must change if the needs of patients with chronic illnesses are to be met.
Second, The Chronicity Project is committed to participating in the public debate over health care and health care financing reform. Since patients with chronic diseases have more interaction with the health care system than any other group of people, if there is to be meaningful health care reform, patients with chronic illnesses must have a place at the table. Right now, that is not happening. Advocacy for Patients has created The Chronicity Project as our public policy arm so that we can put out the word that patients with chronic illness have specialized needs that must be met in order for meaningful health care reform efforts to succeed.
Jennifer is a lawyer, and off topic for this post, I can say from personal experience that she does most excellent work on all kinds of CI issues, free of charge. Advocacy for Patients with CI, Inc. does take and need donations, though!
Back to the topic. Jennifer got me thinking about the term "chronicity." Turns out she didn't just make it up.
From the Free Dictionary:
chron·ic
- Of long duration; continuing: chronic money problems.
- Lasting for a long period of time or marked by frequent recurrence, as certain diseases: chronic colitis.
- Subject to a habit or pattern of behavior for a long time: a chronic liar.
[French chronique, from Latin chronicus, from Greek khronikos, of time, from khronos, time.]
chron'i·cal·ly adv., chro·nic'i·ty (krŏ-nĭs'ĭ-tē) n.
Chronicity is also a medical term. From Medicine.net:
Chronicity: Characterized by long duration. The state of being chronic.
Y'all know I like to use images in my blog posts, but I had a very hard time finding any to go with this post. When I did an image search on the word "disability" it resulted in many images of visible disabilities, most of which had to do with wheel chairs. No big surprise there. I also wasn't too surprised that I couldn't seem to find ANY images when searching on the term "chronic illness."*
Granted, it's hard to capture an image of something like CI that's not readily apparent, but it's obviously not impossible. Just take a look at PainExhibit.com.
CP III - Trapped In Hell
plaster with rebar
13 inches long x 5 inches wide x 4 inches deep
*Note: I WAS surprised to find MANY images in my "chronic illness" image search of the "Chronic" variety of "ganja", or marijuana; apparently one of the most commercial varieties of seeds available on the market. Who knew?
The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those who are in the shadows of life, the sick, the needy and the handicapped.
- Hubert H. Humphrey
CP IIplaster with steel blades
10 inches long x 4 inches wide x 3 inches deep
Doesn't the ADA Amendments Act of 2008 inclide chronic illness in the definition of disability?
ReplyDeleteI don't know, Violet. Your profile lists your occupation as Disability Rights Advocate; maybe you could share that information and it's location with me. I would be very interested in that. My own personal experience tells me that no matter what the ADA says, the real world of employment does not yet recognize chronic illness as a disability, ESPECIALLY invisible chronic illness. Someday I hope it will, but at the rate we're going I have doubts that it will happen within my lifetime.
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