Advocacy is tedious, patient and lonely

But every once in a while you win: Ten tips to success

By FINN M. BULLERS
Freelance writer/editor

Instant gratification is a trait not often found in the souls of the good people who advocate for making the lives of people with disabilities better.

Fellow advocates, you know who you are.

All have embraced the hare-and-tortoise pace of change early in their disability civil-rights’ careers. And know that steady wins the race.

Advocacy is behind-the-scenes, unheralded, long-hours work that generally doesn’t get you on the evening news. It’s early morning trips to the state capitol or cramped flights to D.C. to meet with congressional leaders whose only goal is to get a picture with a person in a wheelchair.

But then there is that brief and shining moment when you’ve done your homework, the planets are in alignment and partisanship has given way to across-the-aisle cooperation.

You met your objective. The bill was signed. The policy was changed. Or a wrong was made right.

That’s when the advocate becomes the rock star.

Take your triumphs where you can find them. In September, U.S. Rep. Kevin Yoder, a District 3 Republican from Kansas, signed on as a co-sponsor of H.R. 942 — “Ensuring Access to Quality Complex Rehabilitation Technology Act.”

In simple terms, the act would get good wheelchairs to those who need them most. It’s a top priority with Paul Tobin, CEO and president of the United Spinal Association, as well as thousands of advocates nationwide.

Here’s why it’s important: “If you’re stuck at home with a cruddy wheelchair, that isn’t much of a life,” Tobin said. “We know that when a properly configured wheelchair and seating system is not available, bad things happen.”

Yoder’s endorsement comes as welcome news, the culmination of years of grassroots activism in an effort to convince red-state conservatives that what we are fighting for is not sloppy, knee-jerk liberalism, but brass-tacks fiscal responsibility.

In my case, a $28,000 complex rehab wheelchair saved taxpayers the cost of a $100,000 amputation, $40,000 in post-operative wound care and the remaining cost for that same power wheelchair.

Three days earlier, U.S. Rep. Lynn Jenkins, a District 2 Republican from Kansas, listened to the merits of H.R. 942 and also signed on as a co-sponsor of the bill designed to allow people with disabilities better access to good wheelchairs.

Fellow advocates, we still have work to do, not just for good wheelchairs, but for global ADA rights, back-to-work incentives, home- and community-based services and equitable managed-care policies that focus on better care — not lower costs.

Right now,  advocates across the nation have a grand opportunity to help shape U.S. policy regarding privatized, for-profit managed care.

The President’s National Council on Disability came to Topeka, Kan., Dec. 4-5 to kick off a national listening forum to gather information on the merits — or failings — of managed care and make recommendations to Congress and the President. I had the privilege to testify

Sandwiched between me and another vocal critic of managed care was    the head of the state’s privatized care effort known as KanCare. Suffice it to say he’s not my biggest fan. Reviewing Internet news coverage from the forum I found the photo at the top of the column.

Said Chris Mullen: “A picture can say 1,000 words. The look Mr. Sullivan is giving Mr. Bullers seems to say, “Just die already, Gimp.”

Then there was the critic who compared me to a welfare moocher and the state official who said I was mad because it was as if the state had been giving me a new car every year and when they stopped, I got angry and went to the media to spill my guts.

No luxury vehicle here. No Cadillac demands. All I want — I have told the state countless times —  is the home-based medical care offered by Kansas to keep me living — and breathing to raise my two children, not a 76 percent reduction in care — to die.

Other critics have said there is only a finite set of dollars and a finite set of care hours to dole out. And if I get the hours I need to keep breathing, then someone on a waiting list in Kansas is denied care. So who plays God? A Darwinian governor? Teabag state legislators? For-profit bean counters?

Still others  have said: Some people live. Some people die. Live with it. Or what? I ask — Die with it?

Some rules of thumb for all advocates:

— Grow a thick skin. There are a barge-load of jerks out there and all seem to have prolific Internet skills. Curse them and don’t let them bring you down.

— Be patient. Wait for your moment to engage — a key event in the news, days before a key vote, or anniversaries of landmark legislation.

— Politicians may ignore you. But they do so at their own peril. “No comment” and refusal to meet with advocates — especially those in wheelchairs — looks really, really bad in the court of public opinion.

–- Good ideas will eventually break legislative gridlock. But it takes time. Follow your gut instincts.

— Remain true to your core convictions. When challenged by power, don’t back down. Imagine your opponent putting his or her pants on the same way as the rest of us do.

— Build a coalition of friends , family, colleagues, grocers, dry cleaners, government wonks, experts, advocacy groups like United Spinal, and your Facebook friends to spread your message.

— Befriend a blogger, columnist, newspaper reporter or photographer sympathetic to your cause. Gather real-people stories that best personify your case. People react best to people.

— Learn to talk in TV-friendly soundbites — quick, clipped quotes in 10-second bursts. Ask yourself: Self, would you tune in to a story like mine?

— No professional credentials are necessary to be an effective advocate. In fact, unvarnished plain talk from real people in the crosshairs of conflict are those who make the front page or lead item on the evening news.

— Failure is not an option.

Said Margaret Mead: “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

_________________________________________________________________

You can reach Finn Bullers, policy adviser for the Greater Kansas City Spinal Cord Injury Association, at: finn.bullers@aol.com or 913-706-2894. Read his “Squeaky Wheel” column at http://www.usersfirst.com.

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