New Experiences, New Material

This photo represents one of the first bright spots in my new life as a disabled person (with ME/CFS). Last weekend was the first time in nearly five months I’ve been really able to move around outside the house, thanks to finally getting a power chair that supports my neck and torso.  We went to Disneyland for my daughter’s birthday wish, and we did it to the nines.

I’ve been working on the next two installations (for the Contemporary Jewish Museum and the San Jose Museum of Quilts and Textiles), with the assistance of friends. I know I will need to hire assistants for new projects, but I’m still feeling freshly vulnerable in this state and I need to adjust.  Also, while I love inviting strangers into certain phases of my process,  I’m very picky about who I let into other parts of my process. Thankfully I have amazing people around me.

With my current condition, half the people get better within two years, and most of the rest never do.  I made the mistake of waiting a year for my back to get better nine years ago, and until my muscles stopped working (and compressing my spinal nerve), it never did.  I am thankful to be out of that level of constant pain, though I know I would trade back the pain for mobility in a heartbeat.

So… I am not wasting time now.  My art is moving on, and I have a fire under me to make new work about this experience.  I am very aware that disabled or not, I am very fortunate.  I have good insurance, my husband’s job supports us, freeing me to do my art without the constraints of whether it will sell or needing another job to support it. We have enough money that my condition is not bankrupting us and I was able to buy the expensive chair that allows me to.  I have supportive friends, an education, the tools to self-advocate, and so much more.  But this has thrown into relief how if this is so hard for me, how much harder it must be for most people.

After my recent experience of traveling with a wheelchair, the systemic lack of consideration and ability to do simple things like take a cab with any reliability, get on a plane you were assured you could take your chair on, or arrive with that all-important chair in one piece have given me fire to push for awareness.

I knew I had been thinking about a piece on Access for a while, but I didn’t realize it had been this long!  June 2013!  Usually with something that scale and cost it really helps me to know it will have a space to show first, but I don’t care anymore.  I will build it, and I will find it places to show.  As soon as the next two installations are wrapped, this is my next project.   I have been thinking about it on and off this whole time, and developing it, but now I have new first hand experience of being confined to home and wheelchair to add.

All that said, this new piece isn’t only about disabled access, it’s about all kinds of invisible access- financial, educational, social, racial, cultural, linguistic, etc.  It is about making people aware of what they can do without even having to think about it, and where others are barring and struggling to get in.