This past week I went to a gala hosted by the Chamber of Commerce. While there I met an awesome person who asked, "What do you do?" I said, "I'm at home, the primary caregiver for my son who is disabled." One of my neighbors who happened to be there spoke up and reminded me I'm an artist. LOL. So I went into my elevator speech about "what I do" and gave her a business card which had this image of an Izannah Walker inspired doll on one side:
https://www.northdixiedesigns.com/2012/01/dixie-redmonds-folk-art-dolls.htm
My initial answer makes people uncomfortable, though it's an honest one. It's like I'm a throwback to earlier times a la June Cleaver. I am not. People don't know or don't want to believe that we live in a world where there are not adequate enough supports for disabled people. "Aren't there day programs?" they ask. Yes, there are, but they do not work for everyone's needs. Many day programs will not or cannot make room for people who need 1:1 staffing. Some will try, but it is very hard to find staffing at the wage set by Maine's legislature. I've seen parent after parent have to quit a job because they could not find staffing for their disabled adult child after school ends.
The question "What do you do?" echoed for me throughout the week. The question is asked in the present tense. I spend a lot of time doing caregiving, advocating for my son in life, trying to help better things happen. And I make art around those responsibilities. When he was in school I made a lot more art.
Anyway, the question of "What do you do?" got me thinking about "What DID you do?" And "What WILL you do?" Those questions are future blog posts.
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