Showing posts with label people with disabilities. Show all posts
Showing posts with label people with disabilities. Show all posts

Friday, June 12, 2009

Claiming my True Identity

Terry Pratchett has written one of my favorite characters: a failed wizard named Rincewind. Rincewind can't correctly spell wizard and, most of the time, can't do any magic. (A Great Spell has taken up residence in his mind, refusing any other spells entrance...you gotta read the books.) Still, he IS a wizard; he claims that as his identity, regardless of what other people might think.

In much the same way, I am an artist. I have only sold a few paintings. I self-published my book, Dancing with Monsters (not, I pridefully point out, because it was rejected but because I have the patience of a gnat and wanted to hold it in my hands rather than schlep it to publishing houses). Like Rincewind, reality seems to disagree with me. I find comfort, however, in the assertion of the great MythBuster-philosopher, Adam Savage: "I reject your reality and substitute my own."

I was worn out by weeks spent in the nasty bowels of medical recommendation and social service bafflement. There, I am a patient, a person with disability, a supplicant to the labyrinthine God of Benefits. I realized I had to think about—and do—something else. I needed to return to my center, practice my identity: I needed to make some art.

Even that idea comes with extra baggage of fear these days. For several years, my ability to use my hands has been decreasing. My left hand is strong, but it shakes and has never been very coordinated. My right hand and arm are weak. Earlier this year, I passed a milestone: the paintings I did for Lent were created using my left hand as much as my right. I felt as if there were a stop watch counting down the amount of time I would be able to make art.

I find inspiration in the work of Henri Matisse who, when he started using a wheelchair, shifted his art from painting to paper cut outs. Because painting was too physically rigorous, he found another way.

When I first started painting, it changed the way I looked at the world. Instead of just seeing a tree, I would notice the colors in the bark and the leaves and wonder what paints to use to mix those colors. I would think about what movements of the brush I would need to make to communicate the textures in front of me. The world became a magical puzzle and I love seeing the world that way.

Here in eastern Minnesota, we have been in near drought conditions. I looked at the sky. The sky that day moved from a light blue at the horizon to a deep blue right above me. It was like a clear, crisp, sustained note—a crystal chime. I sang back to it. I didn't have time, that day, to respond with an image. I did remember, though, and that working on the computer allows me to paint with light.

For several days, I looked at the sky and try to memorize what I saw. Finally, the weekend came and I had time to play with images and colors. I created "Five Skies."




It felt good to be making gratuitous art again.

Not too long ago, exhausted by the media harping on the bad economic news, I put some CDs in my car player. I was listening to Sweet Honey in the Rock. One of the things I love about that group is the rich texture they create with their voices. Thinking about that, I remembered that texture speaks to me. I want to touch things.

The clear blue sky, though, doesn't have a texture. It has depth. My digital drawings weren't capturing that depth.

I came back about a week later and made some refinements:



I don't know if the changes are even visible to the casual observer, but I felt better about the piece after making them.

When I updated my website to add the new sketch, I said I was working on "Five Series of Five." As soon as the words were out of my mouth, I started envisioning what the next five would be. (This time, I am definitely going to get to play with texture!)

Looking at the world through artist eyes, I feel interested and hopeful. Those days of sky gazing taught me that the seeing may be enough. If my hands and arms fail me completely and all I can do is watch and imagine, that will do.

I will be a maker as long as I can be. I will be an artist as long as I live.

Saturday, February 7, 2009

Minnesota's Budget: (A letter to my representatives)

(I have been a bit overwhelmed lately, what with trying to deal with my own healthcare issues, wanting to be more politically active, and being an employee and a parent. Part of me longs for a sharp focus for this blog, but I have to make every expenditure of energy serve more than one purpose. This is a copy of a letter I am sending to my state legislators.)

What an exciting and terrible time to be a policymaker and a US citizen! There is a feeling of possibility in the air, a sense that things can change for the better. At the same time, we are facing horrendous budget deficits and financial insecurity.

In November, I was inspired by a video produced by AARP to take a more active interest in public policy. I am not yet quite old enough to be an AARP member, but I have had multiple sclerosis for 27 years and recently started using an electric wheelchair. I also have a long history of volunteering and working for nonprofit organizations. I am currently working as Web Coordinator for the Minnesota Child Care Resource and Referral Network.

A recent Star Tribune editorial said that “Under Pawlenty’s approach, the burden of closing a $5 billion budget gap would be felt most keenly by the poor, the sick, the very young, renters, the noninstitutionalized elderly and disabled.” That would be me and the people I care about most.

My first steps in my new hobby of political activism have been to read the legislative priorities of groups who share my concerns The Minnesota Consortium for Citizens with Disabilities and The Joint Religious Legislative Coalition to name two) and to subscribe to e-mail updates from them. To be frank, I have been feeling completely overwhelmed by the challenge facing us and the details to be wrangled. I can only imagine how you must feel.

The Organizing Apprenticeship Project and the Minnesota Budget Project helped me gain some clarity with their Kitchen Table Budget Principles. Their five principles include:

  1. Solve the challenges for the whole community. As you look at who will be impacted, make sure that we are all sharing both the benefits and pain.

  2. Include us in solving budget challenges. Before you make budget cuts or implement reforms, ask our communities what the impact might be, and solicit our ideas.

  3. Invest for the long run. We cannot undermine the core infrastructure —access to education, investments in children and families — that ensures opportunities to thrive.

  4. Look for additional resources. Reclaim our legacy by fairly raising the revenues needed to maintain core institutions that promote equity and the good life.

  5. Invest wisely on priorities. The way to spend wisely and avoid inequities is to ensure that policy choices do not disproportionately hurt low income people and people of color.


I encourage you to read the whole document and move forward with these principles in mind.

Because of my job, I was privileged to spend Thursday helping to prepare notes for our Executive Director, who testified in front of the higher education committee about the importance of the T.E.A.C.H. program, which helps child care providers to get a college education. Taking such direct action in support of a cause in which I believe was hugely satisfying.

I am pleased that a series of town meetings is planned to get citizen’s responses to the proposed Pawlenty budget. I will not be able to attend because of my physical energy level, but I wanted to let you know that I hope you will find ways to balance the budget that do not rely on sacrifices made by those of us who are already scraping to get by.

Thank you for all you do for the citizens of Minnesota.