KosAbility is a community diary series that will be posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they're learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
To start off this series, first let me anticipate a few comments.
Why do you use the term "disability"? It's offensive to some.
I like what our own homogenius had to say about this subject: "I prefer to stay away from fights over language. By all means, let's have some discussion about language and disabilities, but also give some latitude for the different ways we each choose to describe ourselves and our life experiences."
How are you defining disabilities?
I spent the weekend with textbooks, dictionaries and teh google. An old edition of Mosby's was too confining: "Disability is the loss, absence, or impairment of physical or mental fitness that is observable and measurable." Nursing textbooks aren't much more helpful for our purposes in this series. The wording varies, but the definition boils down to something like "a persistent mental or physical dysfunction or weakness that prevents a person from carrying out the normal activities of life and work." Well, I thought, what about the Americans With Disabilities Act [ADA]? Surely the ADA can define disabilities? In fact the ADA divides their definition into two categories, physical and mental:
Physical Impairment is any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine. Mental impairment is [a]ny mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.
I still wasn't happy. There are many things about me, for example, that are disabilities only under certain circumstances. A combination of spinal stenosis, bulging discs, degenerative changes, painful SI joints, and concommitant nerve damage in my right foot and ankle qualifies me for SSDI, but is it disabling? Well, yes and no. There are things I can never do (stand for hours at a time, ride horseback, hike to the top of Pikes Peak), there are things I can do sometimes, when injections and meds and therapy combine to give me a window of pain-free hours or days, and there are things that are actually improved since my original injury. Retirement, forced though it was, has given me a completely new life. I have the freedom - yes, with limits, but freedom nonetheless - to do what I want with every new day.
Here's another example. I don't consider my age (61) to be a disability under most circumstances. But when I encounter someone to whom I am invisible because of my age, and especially when that someone is a person whose help I require (like the young ENT physician I saw this week), my age is a disability. It's not just my circumstances that decide whether or not I'm disabled; everyone else I encounter plays a part. That's why I decided to go with the World Health Organization's [WHO] definition:
Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person's body and features of the society in which he or she lives.
Why do we need another diary series? We've got Chronic Tonic for when we're sick and in pain, we've got The Grieving Room for when we're sad, and GOOD GRIEF we've got Nurse Kelley Sez when we need specific information or we need to be bitched at. Isn't that enough?
Some history here. Back in the dark ages there was a diary series "A Little Bit Special" which pretty much disappeared in 2007. KosAbility began as a discussion between homogenius and plf515 about that old series, about the high percentage of disabled people in the U.S. (greater than 20% at the time of the 2000 census), and how there is not currently an all-encompassing place that includes calls to action, needs for legislation, input from parents of children living with such diagnoses as autism and learning disabilities, the "netherworld of hidden disabilities", handicapped humor ... in short, a specific time and place for teaching and community to occur.
Homogenius said, "This [series] ... is intended to take the next step in raising the visibility of, and the amount of information about, Kossacks with disabilities and about people with disabilities, in general. I have proposed the use of the term (and tag) KosAbled (now called KosAbility) as a Kos-specific term we could use for brevity's sake. If possible, Kossacks could add it to the tags in existing diaries to aid in searching. I would also encourage everyone to include links to the many excellent diaries on disabilities in the archives."
So here we are on Sunday, February 21, 2010. I will write an occasional diary and manage the schedule of future diaries. Next Sunday BFSkinner will be giving you more of his unique perspective as a scientist diagnosed with cognitive impairment. We'll hear from plf515, homogenius and jgilhousen on the Sundays after that and, with luck, KosAbility will attract more and more writers with stories to tell. Sign up under the comment I will post each week giving the available dates.
If you have a suggestion or question about these diaries that you'd rather not put in a comment, my email address is in my profile, or you can contact andsarahtoo, queen bee of Chronic Tonic and Nurse Kelley's fallback person, or jgilhousen, the soul of this series. ♥