This Ailing Climate Activist Plans to go Down Fighting

This story was originally published by the Guardian and is reproduced here as part of the Climate Desk collaboration. 

Two months into the pandemic, Casey Harrell was diagnosed with the neurodegenerative disease amyotrophic lateral sclerosis. The 43-year-old climate activist started noticing symptoms in 2019, shortly after the birth of his daughter, Aya. At first, a doctor thought he had a muscle-twitching condition that would go away on its own. Then, he tested positive for Lyme disease, which can mimic the early symptoms of ALS. But, as the world closed down to stop the spread of Covid-19, neurologists concluded his worsening limp and cramps were the early signs of the muscle-wasting illness, for which there is no cure. He could expect to live between two and five more years.

After a short break, Harrell threw himself back into his work, pushing for BlackRock, the biggest asset manager in the world, to use its financial might for the benefit of the planet. “This is an all-hands-on-deck moment in human history. Everyone that can should be fighting for a livable climate and a healthy biosphere,” says Harrell. “My ALS diagnosis has not changed that at all, it has only reinforced within me [the need] to do the work with urgency because my ALS clock may mean that I do not live as long as I had hoped I would.”

BlackRock’s Big Problem (BBP), the campaign Harrell co-designed and launched in September 2018 with a coalition of NGOs, has played a key role in capitalism’s ongoing environmental reformation, pressuring the firm and its CEO founder, Larry Fink, to take the climate crisis more seriously.

Although relatively unknown outside financial circles, BlackRock, together with its rivals Vanguard and State Street, are the largest shareholders in almost every major company in America—as well as being major investors in a number of non-US companies too—by virtue of managing other people’s money, from oligarchs to traditional “mom-and-pop” investors. Their votes on board members are often influential, as are their positions on social issues, from the environment to gun ownership.

Through BBP, Harrell and his network targeted the apparent disconnect between Fink’s public comments on the climate and the asset manager’s actions. The 69-year-old had positioned himself as the conscience of Wall Street in the years since the financial crisis, as BlackRock has expanded at a ferocious pace. Last October, he dined with the Queen and the prime minister at the UK Global Investment Summit and attended Saudi Arabia’s flagship investment conference, often referred to as “Davos in the Desert,” a key part of Mohammed bin Salman’s rebranding of the kingdom.

He also attended Cop26 in Glasgow and was a speaker at the parallel Green Horizon Summit. Fink’s annual letter to chief executives in January tries to set the tone of the year ahead and, in 2018, he told business leaders to contribute to society or risk losing BlackRock’s support, written up in the New York Times as “a watershed moment for capitalism.” Profit was no longer enough.

Tariq Fancy, who was BlackRock’s chief investment officer for sustainable investing when BBP launched, said the campaign had an impact at the highest level of the company. He has recently denounced his former employer’s green credentials, insisting the sustainable investing products he used to oversee are a dangerous distraction from real action. “[BBP] challenged the narrative that had been developing since Larry’s letter in 2018 that BlackRock was on the right side as a climate crusader.”

However, the asset manager continued to overwhelmingly oppose shareholder motions calling for climate action at fossil fuel companies and other major polluters. BBP—born through discussions between John Hepburn, head of The Sunrise Project, an Australian NGO, and Harrell—sought to highlight this mismatch, targeting like-minded employees at the asset manager.

Three years on, the AGM season on Wall Street has become the frontline of climate campaigning. Fink has put action on global heating at the core of BlackRock’s investing operation and his annual letters have become progressively more focused on the climate. On May 26 this year, dubbed “Black Wednesday” for the oil and gas industry, BlackRock voted to oust two ExxonMobil board members in favor of candidates pushing for the company to take the climate crisis seriously. The same day, more than 60 percent of Chevron shareholders backed a motion for the company to cut emissions.

But as BlackRock edges towards the incomprehensible milestone of $10 trillion in assets, with sustainability now at the heart of its business strategy, Harrell is close to losing the ability to speak. The unassuming, obsessive strategist now uses a wheelchair and can no longer pick up or play with his daughter. Once known for his ability to hold a room’s attention with powerful monologues, he is sometimes inaudible and is forced to condense his thoughts into short sentences. Simple tasks have become lengthy and painful, and the fear of another loss of bodily function loss lurks. The motor-neuron connection to his diaphragm has degraded to the point where he can no longer continue in a promising drug trial. A team of friends and neighbors coordinate his care via a WhatsApp group, helping him eat, write emails and condense long-winded anecdotes, which Harrell perseveres with regardless of his illness.

“There’s a moment every morning before I try to move when I wake up and I forget I have ALS. It’s the best moment of the day,” says Harrell. But there is no suggestion he is going to stop campaigning.

In March, BBP announced it was turning its attention to Vanguard, the second largest asset manager on Wall Street, overseeing a mere $7 trillion of assets, and a big investor in coal in the world. “Vanguard’s Very Big Problem” is likely to be his last campaign, devised with his colleague Diana Best, Harrell’s “all-time favorite co-conspirator.” Fink’s equivalent at Vanguard, Tim Buckley, is publicity shy and Harrell thinks he is intentionally “boring,” presenting a comfortable, uncontroversial image that they are preparing to challenge. Vanguard has said it is involved in the in the Net Zero Asset Managers initiative, adding that: “Our experience shows that engaging with boards and companies as they work through the transition to a decarbonized economy can reduce climate change risk and deliver more long-term sustainable value.”

Harrell insists BBP is not done with BlackRock but he is satisfied with the firm’s direction of travel. BlackRock has said it will announce before the end of the year a 2030 net-zero policy and what percentage of assets it will cover (BPP is advocating for 100 percent). Any deviation would ruin Fink’s legacy, he thinks.

“There’s a dominant narrative that, to create change, there’s a hero, the hero does the one thing and the one thing creates the change. That’s utter bullshit,” says Harrell’s wife, Levana, an educator and equity consultant, as well as Harrell’s primary carer. “It takes mass mobilization, and mass mobilization takes intense effort.”

The couple and Aya moved from their home in Oakland to a flat after he started to struggle with the stairs. “As much as it hurts, I also care about the planet. I want to see him win.”

Harrell could easily have found himself in the chairs of the executives he now holds to account. A valedictorian in high school, he studied at Duke University, opting against a place at Brown University and the outside chance of a career in major league baseball. Instead, he immersed himself in student activism—testifying in Congress as part of the Students Against Sweatshops campaign.

In 2002, as a young Greenpeace activist, Harrell attempted a citizen’s arrest on Warren Anderson, the former CEO of Union Carbide, who at the time was facing homicide charges in India in connection with more than 14,000 deaths following leaks from the company’s pesticides plant in Bhopal in 1984. More recently, he co-led a campaign to get Facebook, Google, and other Silicon Valley behemoths to drop coal power and use 100 percent renewable energy for their data centers. They all ultimately succumbed to the campaign demands.

A few weeks after his diagnosis, those closest to Harrell were asked to live with two contradictory truths: that he will somehow ride the wave of new drug discoveries, improve and recover, while also knowing his body will most likely fade away. The outlook for someone with the disease in the US, where it is known as Lou Gehrig’s disease, has not improved since Gehrig, a former New York Yankee first baseman, died from the condition in 1941.

Harrell also advocates for access to drug discoveries that could slow or halt the progression of ALS and even form a bridge to a future cure. He has mapped out a series of drug trials and bureaucratic changes that he thinks could give him and others more time. He is also intensely frustrated with the Food and Drug Administration and the ALS Association, the $100 million beneficiary of the Ice Bucket challenge, for what Harrell says is their slow pace of action on the disease. “If the FDA does not change, I will likely die or become fully paralyzed,” he says, pointing to the campaign started by the former Obama staffer Brian Wallach, I AM ALS, as another example of the need for change. “Groups [like the ALS Association] are not effective, are not growing, and need to either change and evolve or get out of the way.”

There are currently only two therapies for ALS approved by the FDA: riluzole, which made Harrell feel sicker, and only extends life by two to four months; and Radicava (edaravone), which is not approved for use in Europe. Currently, he uses neither, and thinks there are more promising options in development. He wants the FDA to change drug trial rules to account for how quickly the disease progresses, as well as the diversity of ALS. Many patients become so sick that they are unable to take part in trials, making it hard for studies to reach FDA mandates on trial sample size.

“This generation of people with ALS are not going to be content raising money for the ice bucket challenge while they are dying waiting for access to drugs that work now,” he says. “If we knew more about ALS, then we could target therapies to the subtypes. Ironically, one of the best ways to learn about these subtypes would be to approve drugs that work for some and then study why they work for some but not others with ALS. That would also be the humane thing to do.”

One day too soon, it is likely ALS will force Harrell to stop his campaigning. At the start of our interviews in spring this year, Harrell could only speak in a staccato version of our first conversation in 2019, when his limp was starting to develop. Now, he is about to start learning to use Eyegaze—eye-tracking software—that will help him speak though a computer at a maximum of 20 words a minute. A side-effect of ALS known as PBA—pseudobulbar affect—means that Harrell sometimes loses control when he laughs or cries, frightening his daughter during quiet hugs and tender moments when the sadness breaks through. As she has gotten older, she has been better able to understand his condition and wants to help care for him.

“A toddler is really good at keeping you in the moment, but we may be having a moment together and I think: ‘How many more of these might I have?’ I start to tear up and that’s confusing for her,” he says. “No kid should have to deal with that. I feel a deep sadness that, although this is unavoidable, it will certainly traumatize her. At the same time, [she is] a tremendous inspiration to live and live well.”