Delivery of Care

The high cost of living

An interview with Peter Dykstra, EHN climate reporter and now a health care activist – for himself

Image courtesy of Peter Dykstra's Facebook page

Peter Dykstra.

By Richard Asinof
Posted 3/14/22
Peter Dykstra, long-time environmental reporter and climate activist, has launched a Go Fund Me page to help him cover the 24/7 costs of care required by his disabled condition, making the personal connection between health care costs and the environment.
Was Dykstra correct, that the environmental movement became too comfortable with itself? How important is it to have a public health advocate such as R.I. Attorney General Pete Neronha taking on the proposed sale of National Grid to PPL? When will RI PBS do a feature story about the work of Providence-based Rebecca Altman, leading science writer and researcher on plastic?
At the news conference held on Tuesday, March 8, to announce legislation to correct the way that rate-setting is done for Medicaid, many of the people testifying were disabled Rhode Islanders, telling their own stories about how their ability to survive was dependent upon the care they received from personal, in-home care attendants – care that was being put in jeopardy by the low reimbursements paid through Medicaid for such services. Many of these Rhode Islanders find themselves at great risk because the wages being paid to personal care attendants is so low. [See link below to ConvergenceRI story, “Rate-setting becomes a legislative priority.”
What struck ConvergenceRI was how invisible those with disabilities have become in the context of our everyday lives. The biggest fear for ConvergenceRI, to be honest, was walking across the broad entrance way to the State House at the end of the news conference, supported by trekking poles, worried about falling, given the uneven brick surfaces and the lack of an accessible pathway to the street. What would happen if my legs might gave out, unexpectedly?
Thankfully, no drivers, impatient that I was impeding their progress by walking slowly across Smith Street, raced past me, cursing at me. But, inside the State House, none of the Senators involved in the presser reached out to talk with me and inquire how I was doing, and if I needed help. Nor, did any of the news media, save of Steve Ahlquist.
The only kindness in halls of the State House, it seems, resides in the false promises of kindness to be found in pending legislation.

PROVIDENCE – All roads in New Jersey seem to go through Kearny, N.J., an industrial town perched on the edge of the Meadowlands, home to a multitude of factories. A river of highways runs through it, including the New Jersey Turnpike. The town itself often served as a visual backdrop to the fictional TV series, “The Sopranos.” Kearny also served as one of a number of common threads of shared experiences between long-time environmental reporter Peter Dykstra and ConvergenceRI.

Our paths had crossed in the early 1980s when Dykstra worked at Greenpeace and ConvergenceRI worked as an editor at Environmental Action magazine, literally on opposite sides of Dupont Circle on Connecticut Avenue, NW.

Factory work in Kearny in the summers turned out to be another common thread. “I did, too, for one summer,” Dykstra explained in a recent interview, talking about his travails in a factory in Kearny. “My father got me a job at a Teamsters shop, loading trucks for Roadway, down in the Meadowlands. They made me join the union, even though I was only there for three months, and I was trying to save money.”

Dykstra continued: “So, I joined the union. And then, Richie Provenzano, the brother of Tony Provenzano…”

“Whoa. Tony Pro?” ConvergenceRI interrupted.

For those unfamiliar with New Jersey culture and geography, Anthony Provenzano, known as Tony Pro, was a member of the Genovese crime family, who had served as the president of the International Brotherhood of Teamsters for Local 560 in New Jersey, an associate of Jimmy Hoffa.

DYKSTRA: He came up to me, and said: “We are going to sign you up for the health plan.” I said: “Well, I’m just here for three months. And, I’m on my parents’ health plan.”

And he said, I kid you not: “You don’t understand. If we don’t sign you up for the health plan, you are going to need a really good health plan.”

Translated, Dykstra had learned the bare necessities of health care as a young adult – being made an offer he could not refuse. It would serve as an introduction to the health care delivery system in the U.S., what some critics have termed “a market of wealth extraction.”

Today, Dykstra is still in search of the proverbial “really good health plan” – in this case, a GoFundMe page on Facebook and Twitter, to cover all the costs of daily care required by his current disabled condition. [See link to GoFund me page below.]

Dykstra is saddled with a rare disorder, known as MSSA, [methicillin-susceptible Staphylococcus aureus], a staph infection that has eaten away at much of his lower spine, rendering him disabled and confined to a wheelchair.

Here is how he described his condition, with the melodramatic flair of a storyteller:

DYKSTRA: Five years ago, my birthday is Wednesday, [March 2, and the interview took place on Monday, Feb. 28], and five years ago, I turned 60, and I had like a backache. I went to see my chiropractor; he couldn’t figure anything out. I had had backaches before, but this one was just persistent and a little more painful.

I [then] went to my personal care physician; she couldn’t figure it out. She made me an appointment for a specialist. And so, I was driving away from her office, I had an appointment with a specialist a few days later, and my right foot stopped working on the gas pedal and brake.

I stomped on the brake with my left foot, and drove the rest of the way home with my left foot on the gas pedal and brake. I got into the house, and then my left leg went out.

I just collapsed on the floor. And, they took me to the local hospital, they did an MRI, they sent me to the big hospital in Atlanta, and they did emergency surgery, because I had this very rare MSSA spinal infection [a staph infection].

Is that related to MRSA? ConvergenceRI wondered, and had started to ask. But Dykstra, as if anticipating the question, answered:

DYKSTRA: MRSA is the one that is almost always lethal, and MSSA, to continue the [mob] analogies here, is kind of like the “Fredo” of spinal infections. [In the film, “The Godfather,” Fredo is the older, often inept brother of Michael Corleone.] It didn’t kill me, but it ate through my spine and got into my vertebrae, and that was that. I had another operation. I never walked again. I never will walk again.

The problem for Dykstra is not with covering the costs of his hospital, the inpatient care, which his health insurance covers, but rather, with the daily, long-term, at-home care, because he requires 24/7 care, at $14 an hour. As Dykstra explained it:

DYKSTRA: All of surgical hospital care recovery stuff is covered. But the ongoing care – I can’t pee by myself, I can’t crap by myself – and sex is kind of out of the question. I can’t do anything down there below the lower half of my body. I can’t get out of bed myself; I can’t get out of the wheelchair by myself. So, I basically need 24-hour care.

That is $14 an hour, every day, every hour, for the last five years, and presumably for the rest of my life. The only time I don’t need to pay out 14 bucks an hour is if I am back in the hospital.

My health insurance is actually pretty good, but it doesn’t pay for [such at-home services]. I have been researching this, because I have time on my hands; I found that nobody – nobody – pays for this, and two days from now, when I turn 65, and I am eligible for Medicare, Medicare doesn’t pay for it either.

The only chance I have that it will be paid for is if Medicaid – and Medicaid may probably pay for it – but only when I quit working and I completely run out of my money, and my kids completely run out of inheritance.

There are those who say what we have is not a health care delivery system, but rather a market of wealth extraction, ConvergenceRI replied. Dykstra responded:

DYKSTRA: Someone else just said that on my Facebook page, and I am quick to point out that our Electoral College system could be worse. But, you are absolutely right: it is terrible.

Here is the ConvergenceRI interview with Peter Dykstra, a long-time environmental reporter and climate activist, who is now confronting the labyrinths of health care costs in the U.S., at a time when the ongoing climate crises keep spilling over into our lives, like a rising tide. As part of the interview, Dykstra also talked about what went “wrong” with the environmental movement: the fact that, in his view, folks became “too comfortable.”

ConvergenceRI: Tell me about how your current condition fits in with your dedication with your writing and work on environmental issues?
DYKSTRA: I can do my work lying down. I can do my work in a wheelchair. I can do my work in a wheelchair against a desk.

I work 30 hours a week, which is what my main employers require in order for me to continue to qualify for health insurance. [The employers at] my jobs have been very compassionate and kind, as you might expect from nonprofits.

One is Environmental Health Sciences, they are based in Charlottesville, VA, and they publish two websites, one is called Environmental Health News, which is EHN, and the other is DailyClmate.org. I write a piece for them every week, and I edit the weekend pages and send out the weekend newsletter. And do the weekend social media.

ConvergenceRI: What do you remember from the 1980s and your work with Greenpeace? What do you think happened with the environmental movement?
DYKSTRA: What happened was the environmental movement had a lot of victories and still lost ground. And the environmental movement, eventually, as probably almost all movements do, became very comfortable with itself.

And, the “establishment” – with capital letters – of the environmental movement became part of the establishment. At the same time, politically in this country, the two political parties, Republicans and Democrats, became [defined by being] for and against any regulation, anything environmental.

The best measure that I use [to illustrate that change] is the League of Conservation Voters and their scorecards. In 1980, the League’s approval ratings, based on Congressional votes, [showed that] for most Democrats, it was at about 70 percent, and for most Republicans, it was at about 50 percent.

Fast forward to today: Most Democrats are at 90 to 100 percent, and most Republicans are 0 to 10 percent. And there are a lot of zeros [for Republican Congressmen].

My favorite individual stat for this is in the 1980 scorecard, which is available on the League’s website. If you go to the League’s 1980 House of Representatives’ [scorecard], there was a young Georgia congressman named Newt Gingrich, who got 50 percent, and a young Tennessee Congressman named Al Gore, who got 35 percent.

So, politically, [in terms of alignment], that is what happened with the environmental movement. In terms of the organizations that would be considered to be the environmental movement, they got pretty comfortable.

There were a tremendous number of small victories, and the small victories are commendable, but if you look at climate and biodiversity, and the loss of habitat and ocean acidification – and the big one we haven’t even acknowledged yet, plastics pollution – we are still losing [the battles] in a big way.

ConvergenceRI: What, in our wisdom, is your answer to “What happened?” What do you tell your children?
DYKSTRA: I tell my children I fought the good fight, but I am still trying to fight it. And, I have three kids, one of whom took his own life four months before I hit the wheelchair scene. Between that and Donald Trump getting elected, that was a joyous time for me. My other two are not involved in activism, per se, but they are good kids, nor would I stake my judgment on them, whether or not they chose to be activists; they are just good kids and I love them. But what I would tell them is this: I tried my best. But there is only so much I could do.

ConvergenceRI: Becoming too comfortable? What do you mean?
DYKSTRA: Groups like the Sierra Club, which, of course, had already been around for a 100 years, they kind of changed their DNA.

ConvergenceRI: What I saw [at Environmental Action] was that the organization seemed to get cut off from the grassroots – what I would call “environmental justice” movement, connecting with communities of color. And, the growing influence of big foundations …
DYKSTRA: [interrupting] …And then there were a few other egregious missteps, like the Sierra Club taking $25 million from the late Aubrey McClendon, the CEO of Chesapeake Energy, because they had this fabulous idea for a bridge fuel [from coal] called “fracking.”

The Sierra Club took $25 million from a fracking company to kneecap the coal industry.

[Editor’s Note: As reported by TIME magazine in a Feb. 2, 2012, story, the Sierra Club, “the biggest and oldest environmental group” accepted more than $25 million in donations between 2007 and 2010, mostly from Aubrey McClendon, the CEO of Chesapeake Energy – “one of the biggest gas drilling companies in the U.S. and a firm heavily involved in fracking – to help fund the Sierra Club’s Beyond Coal campaign.]

They had to give the money back, and Carl Pope was run out as executive director. But environmentalists were so eager for what seemed like a victory they initially embraced fracking. Now we know – and maybe we don’t know all the problems with fracking – but we sure know a lot of them.

ConvergenceRI: I have shifted in my reporting efforts to focus on health care, rather than the environment, because it was difficult to find assignments as an environmental reporter. It was increasingly hard to find work even though I had a successful career as an environmental reporter. I had written for The New York Times magazine, for the Los Angeles Times, for the Village Voice – but there no longer seemed to be an appetite for such stories. [See link below to ConvergenceRI story, “In cold blood: poisoning our children.”]
DYKSTRA: There was no appetite. One little positive bit that came out of the shift is that the Associated Press realized that science and environmental reporters were some of the first people to be let go as newspapers began to downsize.

And what the Associated Press did was to increase the number of people they had covering the environment, because many newspapers didn’t have an environmental reporter of their own. And, people like my friend, Seth Borenstein, who is one of AP’s main science and environmental reporters, started showing up in the Atlanta newspaper three times a week, because there wasn’t anybody in the Atlanta paper writing about this stuff.

If you go to an SEJ [Society for Environmental Journalists] conference, I started doing a count about 10 years ago, looking at how many people attending the conference were affiliated with one news organization, and how many were just labeled freelance, and it was seven or eight years ago, when the balance was tipped, and more than 50 percent of the people attending these conferences no longer had a steady job.

ConvergenceRI: What stories are there now that you feel like were missed – stories that should have been covered better – fracking was one of them? What other stories did we miss?
DYKSTRA: Well, we are just catching up to climate, maybe 20 years later. And, we have not yet caught up to plastics. And, that might take another 20 years until we really begin to realize that the soil, the air, the oceans, are contaminated with plastics.

Back in the days when I could walk, I used to walk every day. There is this little stream that runs out of Atlanta, called the South River. After a heavy rain, you could smell the sewage from inadequate sewage systems overflowing, but you would also see horrendous stream of plastic cups and soda bottles and basketballs and soccer balls floating down the South River.

My friend was a volleyball coach, so she would take volleyballs, I would take basketballs, and another friend would take soccer balls, we counted how many passed by in 10 minutes; often it was [more than] 10 of each that would pass by – along with lawn chairs. When the South River flooded, it was just awful.

The South River flows into a lake called Lake Jackson. And, we take some pictures of Lake Jackson after one of these big rainstorms, and there were lots of these docks, and on the upstream side of the dock, there were hundreds of big plastic things; it looked like you could walk next to the dock on the plastic – it was all the volleyballs and cups and everything else that flowed down the river.

I started noticing this in 1986. I was on a Greenpeace [adventure]. We were on the trail of people turning [the shells of] Hawksbill turtles [an endangered species] into eyeglasses. And, I was walking along an ocean beach, [and I encountered] the first nurdle spill that I had ever seen.

You know what nurdles are? The little, tiny plastic pellets? [Editor’s note: Nurdles are a form of marine debris, plastic resin pellet pollution, originating from plastic pellets utilized in manufacturing large-scale plastics.] And, the beach, for more than a mile, was awash with nurdles. You literally could not put your foot on the beach without stepping on a nurdle.

That was in 1986, at the time, I didn’t think that much of it. I thought it was just a freak thing, and then they started showing up everywhere.

ConvergenceRI: Looking back at Greenpeace, any thoughts about what happened at Greenpeace? What happened with the decision to hire Richard Grossman [an economist hired to become the organization’s executive director]?
DYKSTRA: I was on the board at the time…

ConvergenceRI: Maybe you didn’t think it was mistake…
DYKSTRA: I was on the board that fired him – he national Greenpeace board. He was a smart guy but he didn’t have the leadership skills., He was kind of sullen – and lacked the leadership skills. [Editor’s Note: Grossman, who died in 2011, went on to found Environmentalists for Full Employment, a group that sought to unite environmental activists and unions. Grossman sought to curtail big business by raising public awareness about what he saw as corporate abuse of power.]

ConvergenceRI: There was also an effort, led by Musicians United for Safe Energy, to attempt to harness the power of rock to advance the antinuclear movement – the idea that you could save the world through rock ‘n’ roll. [Editor’s Note: MUSE a week-long series of No Nukes concerts in 1979, selling out Madison Square Garden.]
DYKSTRA: I think it had its value. Tom Campbell [one of the principals behind MUSE], I called him on his 80th birthday a few years ago. We are getting old. He is a good guy. But it seemed [the concerts] never got beyond Jackson Browne and Bonnie Raitt.

ConvergenceRI. Not true. Springsteen was part of the concert.
DYKSTRA: Yeah he was. A few years after that, I was trying to get him [to do a concert]. We were campaigning against a few toxic waste dumpers in New Jersey. And, he wouldn’t, because he was worried about whether or not people would be laid off from their jobs. Which ironically, was the thing that Richard Grossman was pushing for – how environmentalists never reached out to blue-collar workers, factory workers. And, Grossman was great at that, but he was just lousy at being an executive director.

DYKSTRA: [continuing] I have to get off soon. The health care thing is pretty self-explanatory. And simple. There are certain people who get screwed in the situation that I am in. If I [had been] hit by a drunk driver, I’d be OK. If I were the victim of a doctor [committing malpractice], I would be OK.

There are about eight or nine people in my building who are in wheelchairs. One of them had been [struck] by a drunk driver, and his wife picks him up in a wheelchair-modified Maserati SUV. I had no idea that there was such a thing as Maserati SUV. The modified Maserati SUV cost about $120,000. My power wheelchair cost $36,000.

And my insurer, Anthem Blue Cross, paid for that, no questions asked. They pad for a lot of stuff, and they paid for all my hospital bills. But when it comes to the “forever” stuff – I am talking about onsite health aides – it doesn’t pay for them.

And so I am stuck, and so I am doing a GoFund Me page.

I also get $50,000 from Ted Turner, the only billionaire I ever rooted for. Because after Greenpeace, I ended up at CNN for like 18 years. Until they decided science and environment was in bad taste, and they killed off my whole department.

© convergenceri.com | subscribe | contact us | report problem | About | Advertise

powered by creative circle media solutions

Join the conversation

Want to get ConvergenceRI
in your inbox every Monday?

Type of subscription (choose one):
Business
Individual

We will contact you with subscription details.

Thank you for subscribing!

We will contact you shortly with subscription details.