Working 2 Walk

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Michael and Rachel

Posted by katewillette on April 14, 2008

Okay!  Afternoon in the ballroom . . . we start with Marilyn Smith introducing Rachel Hammerman and Michael Mangienello, both of whom have helped out with this event again and again over the last 4 years.  Rachel goes first; she’s saying that every one of us has a set of handouts for our legislators.  There’s a set for us and a set for each person we meet with.

Our asks: Pass the CDRPA, increase funding for research at the NIH, make insurance companies, Medicare, Medicaid to fund  adaptive equipment for use in homes and private rehab centers.

Michael’s turn:  “This is my favorite weekend of the year, when you guys come.”  He met Dana when they were 25 years old, waiting table in New York.  The Reeves weren’t fancy Hollywood folk, they were just actors who lived on the east coast and their lives were in chaos.  Michael says he was petrified walking into Chris’s room.  “This was a guy I had played tennis with . . . ”  Very soon he realized that Chris was still Chris.  Chris didn’t want anything — not his name on a building, not recognition, nothing.  He just wanted to get out of his chair.

For the rest of the world, SCI was just not on anybody’s agenda.  That changed after Chris’s injury.  For the longest time they didn’t actually ask for anything specific about SCI.  He did meet with the Clintons and managed to get $10 million, which was better than nothing.  Dana was the person who decided that quality of life was just as important to people with SCI as the research.  He and Dana used to sit in the back yard going through a series of  QOL applications, having a little wine and weeping over the ones that involved children.

Mike is saying that the bill named after Chris and Dana has made more progress since they passed on than it did before.  Our presence has changed the equation.  There are a million “disease groups” out there who would give their eye teeth to get their bills as far as ours has; Michael has sat there with people representing Parkinsons’ and Alzheimer’s, and their bills are just sitting there.

Senator Coburn. He has placed a hold on our bill for reasons no one can really understand.

Ahem.  As frustrating as it is, my highest recommendation is that he not be targeted at this point.  We believe there will be movement on a handful of bills and we want ours to be one of them.  There’s nobody I’d rather antagonize at this moment, but antagonizing him at this moment is the wrong thing to do.

If we could get 80 sponsors to sign on in the Senate, we would be unstoppable.  80 sponsors.  Unstoppable.

He says that our presence has raised so much awareness about this bill that it can’t be overstated.  He says, it doesn’t feel like it, but you guys have already won.  The president is going to get this, and he’s going to sign it.  Chris’s kids will be standing there.  (Now, that’s a fine image.)

Okay . . . we also need dough.  Passing the acts will only matter if there is funding to carry out what’s in them.

Rachel is now reminding us to use our own stories to give the Senators something to tell about when they give a speech explaining why they support this legislation.  Picture them in front of the C-Span camera and remember what they like to say:  I just talked with a constituent from my state yesterday . . .

And if your own delegation is already signed on, go and see them anyway and say thanks.  Ask them to help you convince other members of the Senate to sign on and sponsor this bill.  The co-sponsor list needs many more names.  You can use http://www.thomas.gov and look for S1183 and it will tell you who the current co-sponsors are.  That list, ideally, includes everybody who isn’t named Tom Coburn–because he has placed a hold on it and will never sponsor it.  The purpose of the long co-sponsor list is to get this one man’s attention and convince him to release his hold.  Once the hold is released, the bill will pass easily.

Question: Do we care that the co-sponsor list in the House doesn’t have everybody’s name on it?  No, because it’s been passed there . . . in fact it passed UNANIMOUSLY.

Long conversation about how there’s no logic around what Coburn has done . . . he also has a hold on a bill that would create a registry for ALS patients.  It makes no sense and there’s no reason to focus on him — because doing so will not help.  It might very well hurt.

We keep talking about legislative meetings — the strategy, how to focus, what to do after, how to follow up — and they finally say that people who want to can have their cell phone numbers.  Get the packets.  Go talk to these people.  Make it happen.  80 – 33 = 47   We can do this.

Ballroom session over.  Adaptive yoga starts in 20 minutes, oh boy!

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