I want combo trials, and now!!

[betheny]

LOL, that video always kind of embarrasses me, I'm in emotional rant mode. Luckily most wound up on the cutting room floor. Wish they'd included my speech, it was a good one.

[paolocipolla]

Originally Posted by betheny

LOL, that video always kind of embarrasses me, I'm in emotional rant mode. Luckily most wound up on the cutting room floor. Wish they'd included my speech, it was a good one.

You look great in the video :-))

[betheny]

Aww, thanks. Had a great suit that year!

Watching that reminds me how much I love Sen. Harkin. It's time to send him (another) letter of admiration.

[swh2007]

Originally Posted by betheny

THC-I guess I should add, all our rallies included Lobbying Day. We had leave-behind packets re the CDRPA, provided by CDRF. We had preparatory briefings, hosted by pro lobbyists, the day prior. We always had 3 requests, led by passage of the CDRPA and influenced by the political climate at the time. (No sense leading w/ ESC research in the Bush years, you know?)

You're right, a rally without that would be useless. I guess I got so used to it that I think the grassroots lobbying-the essential component-was a given!

We'd see co-sponsor numbers soar for a month or 6 weeks after every trip.

As I recall, the 1st yr. we had around 280 grassroots lobbyist/legislator meetings. That number increased every yr.

Any rally or march without that lobbying day would be useless. The purpose of the rally was to psych up the lobbyists. And we needed it, b/c a day on the Hill in a w/chair is a grueling affair...esp. when you KNOW you'll be shot down by your legislators. (As an Okie, I knew that well beforehand.)

I'm sorry to say we were woefully unsuccessful at meeting w/ legislators during August recess. We did mount that campaign hardcore 2 or 3 times, in cooperation w/ CDRF. (They had a website up, devoted to making appts, the lobbying issues and how to approach, what to wear, leave-behind packets, etc.) IME, the only legislators willing to make appts. w/ grassroots lobbyists during that period are the ones already on our side, e.g. Massachusetts. This is nice, b/c we need to express gratitude and frankly, we need to stroke their egos. Flip side, I've never met 1 Okie that has managed to meet w/ a Senator away from DC. (Actually, I never met 1 of my Senators, Coburn, anywhere, and I went to DC 3 times! He allowed his staff the pleasure of dismissing me.)

Kenzeezy-New soldiers always welcome! Back in my day, the rally would be in the a.m., grassroots lobbying in the afternoon. After the 1st yr, we also hosted a 2-day symposium for researchers to present their work to the sci community. That part is still being done, and done very very well, annually by Unite 2 Fight Paralysis, but they have taken to moving it around instead of being in DC year after year. It's a good idea, but this is why I say we now have a void in DC. We need some grassroots activity to connect w/ the legislators somehow, some way. I think the education and networking aspect of the u2fp symposiums (called Working 2 Walk) are invaluable...but somehow we have to get our faces and our lives and our existences known by the people that decide our fates-the legislators in DC.

I wish I elt better, man I loved that DC challenge. I like stink nasty politics, although the way they break your heart is unsurpassed.

If you are curious, look up Rally in Member's Pictures. There are hundreds of photos. We'd have Wise, ProfessirX, Hilary, Harkin, Dana Reeve, Susan Sarandon, John Kerry, Jesse Billauer, you never knew who might show up to support the CDRPA. It was a ton of work and 10 tons of fun.

Keenzeezy-Every sci I've met in OK echoed what you say about "just live my life". I get it-they're worried about funding their next chair! But it's frustrating that they have no desire to enhance the future for others. If we all were that accepting the CDRPA still wouldn't be passed and we'd still be at Stage I instead of Stage II (funding it). It's a selfish mindset but these ppl have given all they had just to survive sci for so long.

If you are serious about writing letters, PM Leo Hallan here at CC. He has a very complete database he's compiled for yrs. He's also great at thinking outside of the box and coming up w/ innovative approaches. One never knows-Maybe a person your age will resonate with the sci demographic much better than middle-agers like Leo and me. It's certainly worked for Jesse Billauer.

Hi Betheny, it seems you know more than many of the rest of us could hope to learn. Is there any reason to think that we at CC could somehow piece together enough members with common views to accomplish something? Are there any Stage I leaders could help CC in this or have they all moved onto other organizations? If they have moved onto other organizations, where did they choose to go?

[betheny]

The core of the original rally committee went on to form Unite 2 Fight Paralysis. Most of the rest of that committee kind of retreated, it was a one-time thing for them. U2FP is still here, doing good work, they just never wanted that political focus. They see their mission as empowering, uniting and educating the sci community...which involves taking the Working 2 Walk symposium on the road. Last year was in Chicago, this year will be Phoenix (November 2010).

I left the board of U2FP 9 months or so ago. They needed someone w more reliable health. They have really great leaders, I assure you.

My heart remains in DC, or any backdoor initiatives like Hip Crip devised. You have to get your face in front of those legislators. They need to see you in a wheelchair, meet your kids and/or parents, begin to realize the true cost of this injury!

I'm beginning to think you might be able to mount another rally initiative from CC. Your first step is to pick a date, then a website. Again, you might start looking at those ACTUP oral histories. Our 1st rally in DC was in 2005; if you search through the Cure forum for rally, early 2005, you can see how it happened. You'll also see how it nearly self-destructed...that's what happens when you have ppl w/ secret agendas.

And that's all I need to say there. PM me if you ever need more details. It really is almost all public, on CC.

Do you know someone trustworthy that can build a website?

One wrd of advice-I don't think you can do democracy on CC. It will drive you nuts if you try. You can compile a committee of volunteers, tho, and implement democracy within that group. Ultimately, the reputations and even finances of that organizing committee are on the line. Only fair that they make the decisions imo.

[thehipcrip]

Betheny, no worries at all -- the suggestion of August meetings in not without its challenges.

The in-district meetings don't need to happen in August, and they need not happen with the actual Rep. or Senator. It's sometimes more productive (but not nearly as rewarding for the participants) to meet with the key staffer for your issues.

I knew that the CDRPA rally was all about getting people to do their grassroots visits (which I'm really happy to know did exactly what you needed them to do re: new cosponsors). The discussion in the thread here seemed to be getting a little rally-centric, so I wanted to make sure that those unfamiliar with the effectiveness of various tactics knew that it wasn't the rally that produces the political results -- it's what the folks at the rally do once the rally fires them up.

As much as it might sound that way, I'm not opposed to rallies and marches at all. When I was last in Michigan (92-97), we had something called The EVENT. It was a weekend long cross-disability conference with issues and skills workshops, keynote speakers etc. that culminated with a March to the state capital and lobby day on Monday. By its fourth year in 1993 (my first time attending -- and my first year as ED of the organization in charge of making it happen), 1200 people participated. Very shortly after, the Wheelchair Lemon Law we developed became law. (It cannot be said often enough that having PVA as part of your coalition is INVALUABLE.)

Even though The EVENT was a huge success each year and people loved it, we switched the model to having the big EVENT at the state capital every other year, and for in-between years do regional events so that the people who weren't able to travel to the big EVENTs (due to health, cost, whatever) had a chance to participate locally.

I wonder if the EVENT still happens...

[betheny]

Yeah, PVA would be a GREAT ally. We used to try to forms alliances constantly, that was part of the word "Unite". Alliances are the only way ahead. It seems like so many of our sci groups have a problem getting on the cure bandwagon. Especially as politicized as it was the past 8 years, ppl were afraid to support cure for fear they might be called babykillers!

I'm hoping that time has passed.

Any ideas on how to best utilize all these Europeans?

Sounds like the EVENT wound up at pretty much the same crossroads as u2fp-to be a political org, or to take the work to the ppl? Oce again, a lot depends on funding. As you know, a nonprofit can't spend but 5% on political causes.

Boy would I love to see 1200 w/chairs on Cap Hill! We had the CDRF publicizing for us, they reach a huge number of ppl, but motivating them (the ppl) is tough. How did you do it?

[thehipcrip]

Originally Posted by betheny

One wrd of advice-I don't think you can do democracy on CC. It will drive you nuts if you try. You can compile a committee of volunteers, tho, and implement democracy within that group. Ultimately, the reputations and even finances of that organizing committee are on the line. Only fair that they make the decisions imo.

A-FRICKIN-MEN, Betheny! And it's not just CC. There must be a core group of decision makers. There's a terrible but true motto in the disability community: we eat our own. No one feels that more than those charged with making stuff happen.

One of the requirements attached to the 5 years seed grant for the EVENT was the the planning process be open to anybody with a disability who was interested. That's why planning those three days and making them happen took a full year! We'd take a day off after The EVENT (and the first year it was just three of us, me, one staff member and our admin assistant plus volunteers), and then start planning for next year. We could have done it so much more efficiently and with a lot less frustration and aggravation if we had been allowed to make all decisions ourselves.

[betheny]

We got to make our own decisions...and if we didn't raise the $$, we got To. Pay. The. Bills. Ourselves. GULP! Hence the cost of a gallon of coffee being etched in my brain forever!

Either way is tough. Too many cooks DO spoil the stew. But nobody wants to max out their personal plastic hosting an event that didn't pay for itself, either!

We were always lucky, we never lost $$. We were also EXTREMELY motivated to sell sponsorships etc. It would be so much simpler with a $30,000 donor. LOL, wouldn't everything?

[thehipcrip]

The EVENT wasn't just chairs -- it was cross-disability. The 1200 folks were PwDs with all kinds of disabilities (SCI/D, CP, MR, psychiatric disabilities, the whole gamut) and their families.

By the time the new org I ran took over, there were three years of history behind the EVENT, so people had some experience with it and we had valuable word of mouth advertising going for us. Still, we advertised our butts off for the full year before each one -- lots of free media (ads and articles in disability specific publications) and the one statewide cross-disability newspaper, The Fulcrum (which we were also in charge of producing).

It's much, much, much harder to pull off a one time rally/lobby day.

You know, with all the work and minutia needed to pull something like this off, the one thing I remember most about the first EVENT we organized was the challenge of making sure the service dogs had a place to poo at the urban conference center and attached hotel -- especially the dogs who refused to go on cement or pavement! ~lmao~ (Answer: lay sod on the conference center roof for three days.)