reflections related to disability advocacy, family and (needed) cultural change
Tuesday, January 13, 2009
A Few of My Favorite Things
I was tempted to look for the song "All I Want is a Room Somewhere" from My Fair Lady this afternoon. It is COLD here and just going to get colder and colder and a room somewhere “far away from the cold night air” is just what I need—sadly, it has nothing to do with my post.
A woman I worked with made a statement I usually ignore, but she followed it with, “I wish I had some ideas to give my sister.” Apparently her sister is a new mom and the baby has just been given a disability diagnosis. That statement changed the often heard “I don’t know how you do it!” (which I find pointless—pedestals are just too small to live on,) into a request for actual information, so I gave it some thought… What actually does help me?
Turns out there are a bunch of things for me—this is not an exhaustive list and I am sure what works for me will not work for everyone, but maybe it’s food for thought… So here is my list of some favorite things:
Information: Up-to-date, accurate information is critically important for making good decisions. Start with your doctor, look for support groups, there is a lot of great information on line (but hook up with someone experienced to make it easier to tell the good from the bad information.) I like conferences—large and small—I am an interactive learner and listening to speakers and discussing what I have learned helps me.
When you look at books about disabilities make sure that they are recently published—we live in a scientific age where info gets updated all the time and you want the latest and greatest. (If your child has Down syndrome Road Map to Holland by Jennifer Graf Gronenberg is a good one.)
Gathering: My local Down syndrome parent group has provided years of information and companionship for the journey. I have heard some folks say that a disability diagnosis is a poor way to choose friends (I myself have never chosen or rejected a friend by whether or not they wear glasses!), but over my years of parenting I have hung out with the music boosters at my kids’ schools, Irish dance families, the church nursery volunteers, and more—it is helpful and it’s fun to know people who share your common experiences. A few have become forever friends, but whether or not they do, being part of a community that “gets” what we’re doing has been valuable.
A Sense of Humor: Laughter lightens so much. Giggling is good for me!
A Sense of Purpose: I have really benefited from believing that anything I learn, I learn to share. I also believe that changing systems is as important as changing individual situations.
Faith: I am a person of faith and that has given pretty much everything in my life context. I find my faith sustaining (and it gives me my sense of purpose.) Regular doses of inspiration feed faith, so I seek them.
Health and Self-Care: Not that I don’t lapse in this when things just get TOO hectic, but nutrition, exercise, sleep, vitamins, haircuts, regular laundry and showers, and an orderly home (check out Flylady.net) all nourish me when I remember to fit them in. They are the source of stamina—and this life is a marathon, not a sprint.
Optimism: I really don’t get credit for this, somehow optimism is my default setting. Well usually, anyway…. I usually believe that I can try SOMETHING and that I can have an impact with my efforts. It doesn’t always work out, of course, but believing something good could happen makes me more willing to try.
Believers: I worked for many years with a woman that drove me out of my mind. She was an OT who always pushed for MORE for all of my patients—she never settled. NEVER!
If people walked, she wanted them to run, if they climbed Mt. Everest she wanted us to get them to walk on water. Team meetings with her were so frustrating—she was UNREALISTIC in the extreme.
But, here’s the deal: While we never did get anyone to walk on water, we did so much more, got so much farther and our patients made so many more gains because she was on our team—she kept us striving always and everyone won because of it.
I am a disability believer and I surround myself with disability believers. I read them, listen to them and follow them everywhere. Because I know my daughter and everyone I advocate with will go so much further if I do.
My blogroll (in the right column of the blog) has many believers. Also check out the book Disability is Natural by Kathie Snow for an introduction to believing.
Family and Friends: they support everything I have already written. Studies show that people with friends and supportive families live longer, healthier lives. They certainly have more fun. I pursue this actively—for myself and for my daughter.
Distance from Systems: Responsive systems are just not something I can count on. When it works it is awesome. When the doctor listens, the teachers care, the therapists individualize, etc, etc, etc. it is grand. And I can have an impact on this with good advocacy skills and persistence, but I don’t count on this for personal support—any system is only as good as today’s director, grants and budget, and that can change any time. Enjoy when things are good, try not to take it to heart when systems go bad.
Seek Joy, Adventure, Laughter, ETC…: The world loves the “disability is tragedy” script. If you buy into this attitude it will define your life. Disability just IS. I write my own script and frame my experiences in ways I can live with. The ‘woe is me’ mindset just does not work for me.
So, what are your thoughts? What would you share with new moms?
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.