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Where Medical, Political and Educational Worlds Meet
…Or do I really mean “Collide”? On Sunday, Jamie and I attended the annual Neurofibromatosis Symposium conducted by Harvard’s Center for Neurofibromatosis and Allied Disorders (CNfAD). As many of you know, K was diagnosed with NF1 just a couple months after she was born. To date, her condition is relatively mild, and with luck it will remain so.
There is something strangely compelling about taking a peek into the health care sausage factory (I’m sure my buddy Paul could tell you a whole lot more on this front). At this Symposium, there was a microcosm of the health care industry. Physicians, clinicians, social workers, advocates, not-for-profit organizations, parents, patients, educators, lobbyists – with the exception of actual honest-to-goodness politicians – I think we had every category covered, with many people present who filled more than one of those roles. It’s hard to know exactly how many people attended, but at a shot in the dark guess, it was probably about 100 people.
Let’s accept as true that everyone there had an ultimate goal of helping people with NF. The manifestations of how best to reach that goal, on the other hand, varied widely.
Healthcare today – Quantity over Quality?
Now you may have noticed that despite having threatened to do so when I first started this blog, my forays into the discussion of politics have been fairly minimal. There are a number of reasons for this: 1) I have a number of friends from various stages in my life who *gasp* aren’t liberals. Shocking, I know. And while I may disagree (often strongly, and occasionally vociferously) with their beliefs on any number of topics, I respect that their experiences and priorities/values have led them to different conclusions than mine have led me. Besides to be perfectly honest (because, you know, apparently I wasn’t being honest before), I find as I get older that I’m just not interested in getting into fights – or even loud disagreements – with people anymore. I’m not going to change your mind. You aren’t going to change mine. And frankly, my memory is crap so I usually forget all the great statistics I’ve read that back up my position. So there.
It’s Okay to Be Takei.
LALALALALALALALALLALALALALALALA!!!!!!!!!!!!
I’m not quite sure why there are still people out there who think that ignoring something will make it go away.
Tennesee legislature, I’m talking to you. The State Senate in Tennessee has passed a a bill being dubbed the “Don’t Say gay law.” If it were to pass the House, the bill would prohibit teachers from discussing homosexuality in the classroom.
Bipartisanship
So interestingly, I’m not nearly as political on this blog as I thought I would be. I think there are a number of reasons for this, but it’s probably mostly because I rarely find it to be advantageous to get into a shouting match about most of the issues about which I feel strongly (which, you know, would be pretty much all of them). In the end, there is rarely a time when I will convince you, nor will you convince me, and we’ll probably just irritate each other.
But I also appreciate that the more you talk to people with your same views, the more polarized this country gets. And so I think it quite important to bring to your attention this beautiful piece of bipartisanship. I only hope that we can address other initiatives as gracefully.
Our Story: Baby Girl – Part 3
This is part three in a four (plus)-part story about Baby Girl. This post will be the most politically charged, so please proceed with caution. Feel free to skip it if you prefer. Read the rest of this entry
Our Story: Baby Girl – Part 1
Let me preface this by saying this is an intensely personal story about an extremely explosive topic. I’m not trying to pick a fight. I’m not even really trying to make a political statement, though I recognize that it may be taken that way. I am certainly not trying to offend anyone. I just want to add our story to a discussion that’s recently been sparked by one family’s story. It’s a long story, so I’ll detail it in a short series. Read the rest of this entry
