Miriam Edelson is an author, mother, and activist. She is the mother of two children, Emma-Maryse and Jake. Jake was born with a severe neurological disorder. I had the opportunity to interview her about activism.

Question: Most of my readers have ordinary lives. They struggle to balance family, personal and career responsibilities. They wish they had time to advocate for the causes they care about. Along with these same responsibilities, you had a special needs child and yet you managed to find time to both advocate for and write about your own and other children with special needs. What advice would you have for my readers on fitting advocacy into their lives?

Miriam: I have found that when an issue becomes pressing -- whether it’s a child’s health, school closing or threat to the local water supply -- motivation for getting involved can be pretty strong. Especially when you learn that others share your concerns, it seems so much less daunting. Depending on your objectives, you need to reach out or join efforts already underway. I have found that fitting advocacy into already hectic lives requires focus. It’s best to choose one issue; very few of us can sustain being “out there” on all fronts at the same time. The most successful advocacy initiatives I’ve been involved with also have a social component -- it can be fun to meet new people and feel the camaraderie that comes out of team work.

It can be a challenge to find a balance between one’s political activity and other responsibilities. A supportive friend or partner always helps, especially if they can take on some of the tasks you normally do at home. I believe learning to pace ourselves, to stay healthy, is the bottom line: being mindful of the strength we can draw from our circles as we work toward a community goal, helps make advocacy become just one more aspect of our lives.

Question: One thing that struck me reading your book, Battle Cries, is that the families you interviewed often had no prior contact with the institutions and policies that they now had to navigate in order to advocate for their child. How do you get people to care about fixing the problems and supporting the institutions, and policies before it touches their lives personally?

Miriam: People often need to be moved personally, to feel they have a stake in something, to become involved. Since there is always some challenge - as local as demanding speed bumps on our streets to keep our kids safe, to taking on government decision to bomb Iraq - one needs to feel that change/improvement is possible. If you can find even just one other person who agrees there is a problem, it’s a start. I have also found that once we share a concern, people often recall someone they know who is in a similar situation. The challenge is to make links with those around us and start organizing.


Question: Did you ever feel the problems were so overwhelming that you wanted to retreat into the privacy of your own home and come up with an ad-hoc solution, rather than trying to fix the policy creating the problem?

Miriam: Yes. That’s why it’s so important not to feel isolated. There is definitely strength in numbers and I think this has to be at the personal level as well. I have found that it’s crucial to enjoy daily life activities and try hard not to let “causes” drain all of my personal resources. Being mindful of that balance has helped me not ‘give up’ at certain times. That old macho ethic that requires political activity to consume you 24/7 rarely brings us closer to our goals, but it can mean you “burn out” and lose interest.


Question: Democratic societies bestow rights and responsibilities on their citizens. Particularly in America, we tend to know our rights much better than we know our responsibilities. Where do you feel people fall short on the responsibility side of being a citizen of a democratic society?

Miriam: People, including our youth, are not usually taught about civic responsibility -- the idea that there is a community good from which we all benefit and to which we all need to contribute. Instead, so many values stress individual rights. For democracy to work, I believe that values of social justice need to be part of how we understand our place in society.

It’s wonderful to see people take an active interest in defending the hard-fought right to choice or improving the public school system - and I think this is happening in pockets across North America. Of course we will always need greater citizen involvement to achieve social change, but I think it would be a mistake to believe media cynicism that suggests everyone is apathetic. Even if concern for one’s society is not always expressed by membership or activity in a political party, it’s there.

I suppose the challenge is to encourage people to act “locally”-- join an environmental group or volunteer to work the phones during an election campaign -- and hope that out of such experience people capture a sense of accomplishment, knowing that their efforts are paying off. I think this helps us believe that trying to make the world a better place is worth it.



Miriam Edelson is the author of two books, My Journey with Jake: A Memoir of Parenting and Disability; and Battle Cries: Justice for Kids with Special Needs. Read my review of her book Battle Cries.