reflections related to disability advocacy, family and (needed) cultural change
Monday, October 06, 2008
Healing and Get Down: 31 for 21
Good heavens, where does the time go??? This past week has been overflowing with kid activities (my son was in a play and yes he was wonderful, thank you!)Once you step away from your blog--writing and reading--for one minute it becomes hours and then a week before you know it.... Forgive me, I have missed you all!
One of my blog-acquaintances is hosting a blog-fest on healing. I said I would join, I even wrote the post. I also found out about Get Down: 31 for 21 and said I would join that. Then I could only visit my computer for 10 minutes at a time. I have some serious make-up posting to do!!!!
Healing is a tough subject for me. To start with, I’m a nurse.
Combating illness and loss of health have been a big part of my life. When I graduated from nursing school I did my time in acute care, treating any change or deviation from “The Norm” (not the guy from Cheers… I don’t think…) like a sworn enemy. I felt powerful. It was grand.
Then I grew up.
Since that time I have worked in chronic care and gotten to know people with disabilities and I have learned that health, wellness, brokenness, and ‘the norm’ are not as clearly defined as I used to think. In fact it’s all pretty subjective.
In the disability community there is a range of responses:
I know people whose disability is their sworn enemy. They pour all their time and energy into achieving certain health goals such as walking again or speech or something else. I know folks who have poured their life’s savings into a trip to Europe for holy water to end their diabetes. These folks will often sacrifice other interests and relationships and more to meet their goal—and they could never do anything less.
I know others who see their disability as a ‘fact-that-is’ and whose focus is not on a “cure.” These folks title their goals differently. They tell you they want mobility, communication and solutions usually to support their other interests and relationships. These solutions may take a number of forms. These folks are equally committed to meeting the goals they set for themselves or their children—for instance, I have a friend who is scouring the globe for the most effective voice-output device for her son because he wants to do public speaking.
And, of course, there are many points in between, alongside and around! (And none of these folks can understand for one moment why the other lives the way they do!)
As a nurse my role is to listen to my patients and apply my expertise to THEIR goals.
As a mom I am pretty comfortable with my kids’ diagnoses. They don’t usually bother me much and I get pretty offended when people try to foist cures or lay hands on them. I don’t think they’re broken, just different. I do work hard to find therapies, treatments and accommodations that serve their lives (just try to stop me from getting them, I dare you!) but….
“That serve their lives,” is the key phrase to me.
I read an essay, years ago, that said that “A violet is not an impaired daisy.”
I thought that was perfect—I like both daisies and violets and am privileged to have both in my garden. (If anyone knows where this essay is online I would be happy to link to it. I think I probably read it around 15 years ago, no idea where.)
My comfort level is not always comfortable for others, I have found. On our first visit to the endocrinologist when my daughter was 8ish I wrote on the office questionnaire that other than thyroid issues she had no other health concerns.
The nurse who was weighing and measuring was looking at me oddly and started grilling me.
“Does she have any other health conditions?”
“No, we’ve been very lucky,” I answered.
“Her heart is ok?”
“What about her digestion?” She asked.
“No, she doesn’t have digestive problems.”
“How’s she doing in school?”
“She doesn’t have any other health conditions?”
I shook my head.
Finally she took a deep breath and said, “Does she have any SYNDROMES???”
“Other than Down syndrome?” I asked.
“She DOES have Down syndrome then? Oh, well OK then,” she said, and left the room.
Finally the light dawned and I realized that she thought I didn’t know… or that I was in denial. I laughed through the rest of the appointment and all the way home.
It still makes me chuckle.
While I can’t stand the idea of loss of function and work and pray hard for healing of illnesses like cancer or addictions, I view disability through a different lens.
I think it is perfectly acceptable for healthcare to become a central issue for short periods while someone is in the hospital or recovering from surgery, but I can understand if a person doesn’t want to make it the focus for their life.
What could be better than a crisp, efficient institution? And what could be wrong with days full of daily care and therapies and treatments??
Well, plenty, if you would rather do something else.
Individualize. Everything. Always.
Here’s my list:
Things that need healing: • Presumption that a one-size-fits-all plan/belief could actually fit anyone! • Prejudice, unkindness, bad attitudes • Systems that have forgotten their focus • Rifts between—well, pretty much anyone! • Illnesses and losses that get between people and what they want to do with their lives. • Medical model, we-know-what’s-best-for-you situations.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.