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Casey Harrell at her Oakland home, California.
Carolyn Fong/The Guardian
This story was first published by the Guardian It is reproduced here as part the Climate Desk collaboration.
Two months intoThe 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. A doctor initially thought he was suffering from a muscle-twitching condition. However, it would resolve on its own. He was then diagnosed with Lyme disease, which mimics the symptoms of ALS. Neurologists determined that his worsening limp, cramps, and colitis were early signs of Covid-19. There is no cure. He could expect to live another two- to five years.
After a brief break, Harrell returned to his work and pushed BlackRock, the largest asset manager in the world, into using its financial power for the good 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 FinkTo take the climate crisis 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 can be influential, as well as their positions on social issues such gun ownership and the environment.
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 made himself the conscience of Wall Street during the years after the financial crisis. BlackRock has grown at an accelerated pace since then. 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 was also a speaker at the Green Horizon Summit in parallel and attended Cop26 in Glasgow. 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.”
The asset manager continued to oppose shareholder motions calling on fossil fuel companies and major polluters to take climate action. 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 later, the AGM Season on Wall Street has been the forefront 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. Chevron shareholders supported a motion to reduce emissions.
BlackRock is nearing the incomprehensible milestone at $10 trillion in assets. With sustainability now at its core of its business strategy and BlackRock’s focus on the future, Harrell is losing his ability to speak. The unassuming, obsessive strategist now uses an electric wheelchair and cannot pick up 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 are now difficult and time-consuming. The fear of another loss in bodily functions lurks. His motor-neuron connection with his diaphragm is now so weak that he cannot continue to participate in a promising drug study. Harrell is supported by a group of neighbors and friends who coordinate his care via a WhatsApp Group. They help him eat, write emails, and condense long-winded stories.
“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. He is not going to stop campaigning, however.
BBP announced that it was turning its attention towards Vanguard in March. Vanguard is the second largest Wall Street asset manager and oversees just $7 trillion of assets. It is also a large investor in coal. “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 stated that it will announce a 2030 net zero policy before the end of this year and the percentage of assets it will be covering (BPP advocates 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.”
After Aya began to have difficulty with the stairs, the couple moved to a flat in Oakland. “As much as it hurts, I also care about the planet. I want to see him win.”
Harrell could have easily been in the same position as the executives for whom he now holds them accountable. He was valedictorian of high school and chose to study at Duke University over Brown University. This allowed him to pursue 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. In a more recent campaign, he led a campaign to get Facebook and Google to stop using coal power and to use 100 percent renewable energy to power their data centers. They all succumbed to the campaign demands.
Harrell was diagnosed with the disease in late September. His closest friends were asked to live with two contradictory truths. One, he will ride the wave of new drug discovery, improve and recuperate, while the other is certain that his body will eventually die. 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 drug discoveries that can slow down or stop the progression of ALS, and possibly even provide a bridge to a cure. He has laid out a series drug trials and bureaucratic improvements that he believes will give him and others more time. Harrell is also frustrated at the Food and Drug Administration and ALS Association, which was the $100 million beneficiary to the Ice Bucket Challenge. He says they are slow in taking 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 ALSAnother example of the need to change is the case of the. “Groups [like the ALS Association] are not effective, are not growing, and need to either change and evolve or get out of the way.”
FDA currently approves only two treatments for ALS. They are riluzole which made Harrell feel worse and only prolongs his life by two to four more months. Radicava (edaravone) which is not approved for Europe. He currently uses neither and believes there are other promising options. He asks the FDA for changes to drug trial rules that account for the speed and variety of ALS. Many patients are so sick that they cannot participate in trials. This makes it difficult for FDA mandates regarding 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 way to learn more about these subtypes is to approve drugs that work well for some people and then study why it doesn’t work for others with ALS. That would also be the humane thing to do.”
OIt is possible that Harrell will be forced by ALS to stop his campaigning. Harrell was unable to speak in the same staccato style as he did in our first conversation in 2019. This was when his limp was developing. 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 grew older she has been able to better understand Harrell’s condition and is eager to help 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. It is unavoidable but it will traumatize her. However, [she is] a tremendous inspiration to live and live well.”
