Delays in replacing a 17 year old wheelchair

Despite the fact that he hasn't had a new wheelchair in 17 years, 33 year old William "Dub" Johnson had to reach out for help from politicians to get the wheels turning for a new one at Medicare, after his coverage on Medicaid switched when his dad died. The wheelchair is so old that the sip and puff feature causes it to move forward erratically, banging into and breaking items in his mother's home. The family pets scatter because it "flies out of control".

Both wheels have been welded back on. The brain box, which controls the chair's movement, is made of parts taken from three other wheelchairs. Exposed wires drape below a duct-taped headrest.

The entire contraption, every cracked piece of plastic and scrap of vinyl, is faded and worn. For more than three years the Johnson family has been trying to get a new one, but to no avail.

Finally, the tide may be shifting in their favor. In recent days they've fielded calls from Congressman Allen Boyd's office and are awaiting a return call from Medicare.

[visual image: William is shown from the rear, seated in his power chair on the family farm, watching the dogs play.]

Upset versus steamrolled

I was just looking at the sports headlines and noticed that in the tennis section, when they reported a match result, they referred to it as an upset. In the football section, words like steamrolled and hunted were used.

I've watched several interviews of politicians this week and a few might be described as "upset" about how their constituents are reacting over the economy. A number feel steamrolled and, in describing their phones ringing, some sound hunted.

And I think it's a good thing that accountability levels have (finally) gone up for elected officials - because politics is much like sports. Results matter when people are paying attention. The larger the stadium, the more at stake in ticket sales. It's nowhere near as "upsetting" when no one is watching for many folks.

Some people opposed the original bail out, saying they had paid off their mortgages and others should do the same. But when the bill was struck down, they called their officials complaining that their stocks had fallen. The opposition from the public lessened after the House voted against the bill and the market fell. And Congress members reported that their phones rang when the market fell. They also reported that some of the same callers changed positions over the course of a few days.

People were upset. They felt steamrolled. Their savings, pension plans and stocks lost ground- and they wanted action and answers. Panic set in. And despite all the rhetoric flying around, people did not understand what Congress was doing, because we have a communication failure with our elected officials. That's what this crisis has shown us.

I was steamrolled a few times playing wheelchair tennis, outmatched by a more powerful opponent. It never feels pleasant to be steamrolled. But there are ways to do it that leave the one with less power feeling less steamrolled. I recall sitting at the net one day with a friend who was beating me, 6-1, 5-1 and I suspected she'd given me the two games. So I asked her if she did.

"If I had," she said, "I would never tell you."

She proceeded to win 6-1, 6-3. Perhaps my question unnerved her, or she decided to be more generous. I'll never know. But I didn't feel steamrolled. I felt good about the games I managed to win against a more powerful opponent and I didn't begrudge her the well deserved victory - or the fact that she was a more powerful player.

Of course, our economy is not a game, but the power plays surrounding it, as many Americans are finding out, often are. And it would behoove elected officials to note that steamrolling falls in the sport of football, where tackling people to the ground to win only teaches them to respond in kind.

This makes me MADD

A woman with disabilities, Rose Harn, was asked to leave a fair exhibit and now no one can seem to agree who should take responsibility. In fact, this article lays out the three different versions of what happened.

The woman, who volunteered for MADD as an "example" of what can happen when people drink and drive, was evicted from the fair and now some from MADD are blaming fair officials and others are saying it was MADD that made the decision. Why was she told to leave?

Because the sight of her was offensive to people and they complained. And, after fair officials complained to MADD about the reactions of people, her husband was told not to return - with Rose- as volunteers by MADD.

In the two decades since Harn was left brain-damaged and paralyzed by a 16-year-old driver, her husband has taken her to numerous Mothers Against Drunk Driving events in Idaho as an object lesson in the consequences of drinking and driving.

But that was before MADD removed Harn as a volunteer at its booth at a state fair last month amid complaints that the sight of her was too disturbing.

The Harns have filed a discrimination complaint with the Idaho Human Rights Commission against MADD and the company that operated the fair. MADD is taking a closer look at its practice of bringing accident victims to public events. And the incident has stirred up townspeople in this community of 50,000, situated in a sugar beet- and onion-growing region 20 miles from Boise.

''People with all kinds of disabilities, disfigurements and challenges have the right to be at public events, no matter how queasy someone may be,'' the Idaho Press-Tribune in Nampa railed in an editorial.

Exactly what happened at the fair is in dispute, and the state agency is investigating. MADD, for its part, said it feared trouble at the fair and acted out of concern for Harn's safety. via NYTimes.com

MADD has issued a statement on its Idaho website.

Not that long since the last of the Ugly Laws were repealed, in the 70s.

Link to Senate bail out bill

Right here.

Meeting Wheelchair Dancer - In Person

I was so excited when I heard that Wheelchair Dancer was going to come visit me! I've read her blog for years now, and always look forward to her posts that she squeezes in between her travels and performances and the rest of her busy life. Posts that are so intelligent, but also come from the heart and say so many things that need to be said and heard - so of course I knew when we met that the conversation would be non-stop.

And so it was.

As we drank tea, we talked. As we rolled along, we talked- even when we had to roll in front or behind each other. We even stopped to talk in the middle of a street at one point.

Well that was a bad idea, but we're okay.

We talked until the train came to take Wheelchair Dancer away. And, like all dancers, she disappeared gracefully, leaving behind memories and a piece of herself that I carry in my heart - gifts that I'll treasure.

And, of course, we both have more to say. And so we shall.

Pass the bucket

The bail out of Wall Street, article after article says, is not about Wall Street.It's about us. And it's now a rescue mission. We are in the rescue boat, bailing out the water. Pass the bucket.

We are rescuing our economy, allowing credit to flow so jobs and business transactions can continue, so we don't face losses in savings for college and pension plans. We rescue ourselves by rescuing Wall Street, despite acknowledging their excesses.

But, you see, the problem is we do this by dipping into the (tax) pockets of those who pay the most taxes percentage-wise on their income, those who have the fewest deductions in a system designed to benefit those who have the most flexibility to get the most deductions. Fifty percent of corporations don't even pay taxes any more.

Pass the bucket.

You see, the main problem I have is that this situation, all crisis-like-rescue-heroic-mode, did not happen overnight. And it happens right before an election where we get to choose new platforms, right? But while we bail the old water out of the boat, we won't be able to make the changes we need to make in a whole lot of other areas that have been let go that affect the same people who are now expected to bail out Wall Street. Oh, I'm sorry. Our economy.

Pass the bucket.

You can't see me so you don't know what I'm doing with that bucket when it gets to me.

Now I don't have any children, but I do have four nephews and a niece. Two of my nephews have disabilities which require ongoing and consistent health care. Expensive therapies and medication are involved. I've watched the struggles my siblings have had to obtain services, a good education and care for their children. One is now a young man in college and the other still in middle school. Every change requires adjustments - and more services, sometimes equipment. One of my siblings has carefully invested money for his family and their future and the last thing I would want is to see that money downsized in any way.

Pass the bucket.

My other sibling is not able to save money. She relies on paycheck to paycheck from multiple jobs worked by a husband who is a cancer survivor with a heart condition. Their child's care comes first and choices have to be made. And, although before I acquired my disability, I was able to help out, that's no longer the case. So I watch this with a heavy heart.

Pass the bucket.

As we bail out the boat, however, I do wonder not just about my sibling who has been able to save money , but about the sibling who hasn't- and pays taxes from two jobs that don't pay a whole lot of money. I know from my own situation how expensive a disability is to have in America. It sucks you dry financially. There is no relief, no bail out, no rescue on the horizon for many if we are busy bailing out/rescuing our economy from what might have been seen.

And that, I think, is behind the mistrust of many who oppose the bail out-or whatever you want to call it. We can argue back and forth about who should have done what, but the truth is that the Senate will most likely pass a rescue plan and the House will follow.

But make no mistake about it - we are not all in the same boat.


[image description: Two young people are seen standing in a small boat, bailing water out with buckets.]

Rhythm of Life

Doug Burris has taught music at a high school for many years, winning awards and producing students who remember him as a teacher who they could always go to. Doug, who has MS, is now a quadriplegic. This video, which is about a documentary featuring Burris and his music program in Florida, shows that what his students learn goes far beyond music.