Wednesday, 23 November 2011

Michael J. Fox is Awesome

Disruptive Philanthropy
I saw an amazing interview on Wednesday morning with Michael J. Fox.

Michael J. Fox is Awesome

Michael J. Fox will always hold a special place in my heart because:

1) I love the "Back to the Future" Trilogy

2) He's Canadian

3) For a person living with a debilitating nerve disease (Parkinson's), he's got the best attitude of just about anyone I can think of. It doesn't seem like anything gets him down (although I'm sure, like all of us, he has his days).

The interview I saw focused mainly on the role that the Michael J. Fox Foundation plays in finding a cure for Parkinson's disease. Fox sees himself as a "disruptive philanthropist" - he gives money to researchers, but he requires them to report yearly about their progress. This model of funding is apparently quite different from most, and Fox does it because it forces researchers to keep in mind that there are people at the end of the line waiting for the results of this research.

"Patient-Centred" Research

He used the word "patient-centred" in the interview, and I actually laughed out loud. Patient-centred! What an idea!  What a revolutionary concept, to design anything that is supposed to help people - supports, planning processes, research - *around* the people that these things are supposed to help!

Designing anything according to person-centred philosophy is more work. It requires more listening, more patience, and often more creativity to assist people to meet their goals. It can be sometimes be infinitely frustrating. But it's also infinitely important. It's a way of showing people respect and of saying to them that their goals and dreams are worthy of being taken seriously. It's easy to let person-centred methodologies fall by the wayside as staffing levels get cut...but it's because staffing levels are getting cut that person-centred planning, and creative, community-based ways of  assisting people with disabilities to meet their goals becomes even more important.

But back to Michael J. Fox.

He's Just Awesome

I'm more and more impressed by this man every time I see him interviewed. Anyone living with any sort of illness or disability can take a lesson from him about taking what life gives you and just...running with it. And about how sometimes being disruptive isn't always a bad thing. :)

Check out the interview here, including footage of Michael J. Fox's recent performance of "Johnny B. Goode":


  1. Cool guy doing his thing without being too full of himself... I really like the idea that they are trying to get the pieces of the puzzle, the disconnected snippets of research to come together... I think there is a huge need for that kind of examination of the interactivity of things being done all over the world.

    cheers mate

  2. If you look at his appearances, and then the years he doesn't work, you can track the bad times an the recovery. I too am rooting always for Michael J. Fox and his obvious 'milking it' and exposing stereotype in The Good Wife made me laugh out loud, much like the idea of 'patient centered'. I did say to Linda, "I think with this lifespan, he is getting a wee bit more than the standard 9 month wait for each specialist, and a bit of el-dopa and 'see you in eight months'

    Because Parkinsons' is related in a way they don't understand to my disease, I know both the disease and many who have it. That he can do those takes, and not fatigue and brain fog the lines - just his continued professionalism towards his craft but also his refusal to disappear (the opposite in fact, with 2 bio's on life with parkinsons), make me admire him.

  3. Yes, finding ways to link the research is integral...we lost so much time and life when AIDS first emerged because researchers couldn't manage to do that. It was criminal, really. (But that's a whole other story!) Fox has been like a dog with a bone with his foundation...he really has moved the research along.

  4. Yes, I kind of watch for him that way, too...if he's off the radar for a while, I assume that there's a reason, and I always figured that he left "Spin City" because he was starting to become ill (I hadn't heard that confirmed until this interview). He seems to be looking stronger in this interview than he has in past ones, so whatever treatment he's on must be agreeing with him. I've always assumed that he sees private physicians.

    I've never read his books, but I remember after hearing him interviewed after the last one was released that I really wanted to read it. I should see if the local library has it.

  5. Sarah, the film, the Band played on does a fairly decent job of showing the research in the US and France and who wanted credit, etc. Most gay men from that period HATE (I don't think I can use the word strongly enough) Reagan for his official policy that no organization funded either talk about HIV or mention it (as he did not for 8 full years). It is hard to get funding for research when people think you can catch it from a gay man sneezing. The US policy of not allowing anyone with AIDS to visit means not only my gay friends can't come to the US, but neither can many of the immigrant friends. With life expectancy normal for western world countries, a policy like that is making a AIDS wall, like the Berlin Wall a couple decades ago that will create the kind of seperation that Stephenson shows in The Diamond Age.