I'd start by talking with other parents, sharing my feelings and whatever information I had. I'd try to get parents and teachers together with people working in self-care, visiting some self-care projects. I'd try to give them an opportunity to experience some self-care education for themselves.
Then I'd put it on the agenda of the local PTA or welfare mother's group or whatever kind of parents' group existed—maybe invite someone working in selfcare to give a presentation. Then get the parents and teachers to come up with some specific proposals.
I don't think you can have a good self-care program without the parents' support, because what you have to do is really put the learners in charge. Give the students the initiative to invite people to come to class— physicians, dentists, alternative healers, runners, meditators, people from self-help groups. Give the kids a feeling that it really is up to them, that health is not just another thing they're going to have rammed down their throats. You need parental support for that, because that's a hard idea to sell to traditional educators.
There seems to be a real reluctance to discuss disease with children. A classmate of the children in a class I taught had a brain tumor. Our kids were very curious about what was going on with him. Why was he in hospital? Why was he being kept home? Why had he lost all his hair? What did it mean that he had cancer? Was he going to die? But they'd definitely gotten the message that it wasn't okay to ask, that it was something so horrible you just didn't talk about it.
I wanted to invite him and his parents and perhaps his doctor to come and talk to the class about what was happening. The other teachers were horrified. They felt that having him talk about his experience would be too scary for the children.
Yes, and it's in large part this very pattern of treating such serious illnesses as if they were taboo—except for professional health workers—that makes being seriously ill such a frightening experience. Not only are you sick, but nobody will talk with you.
How did you first get interested in self-care?
It really grew out of my fascination with what was happening in the women’s movement in the early 1970’s Passing the speculum technology on to individual women seemed to point the way toward a much broader transfer of skills and responsibility in health. I got very interested in extending that kind of health empowerment to the population as a whole. Compared to what was happening in the new women's clinics, most of what was being called health education was a pretty feeble effort.
The women's clinics were teaching skills that really empowered the people who learned them. They were teaching laypeople to do things that had previously been done only by doctors. They were really transferring knowledge and power from the professional to the client.
Maybe you could describe the proposed adult selfcare project you're working on in New Haven.
Our project is set up to allow four different communities to plan and carry out self-care programs that would meet their own needs. The four communities are very different in economic and ethnic composition. One is a blue-collar neighborhood with a good number of first- and second-generation southern European and Puerto Rican families. It's served by a consumer governed free clinic. The second is a predominantly Black and Puerto Rican community with a strong community health center. The third is an economically depressed area which recently lost its textile industry. It's a depressed working-class area, served by a community hospital and its clinics. The fourth is a university community—students, staff, and families—served by a prepaid medical plan on campus.