David and Jen on their wedding day, and Jen undergoing treatment for her rare sarcoma.
It was 15 years ago this month, but I'll never forget those words. When my wife Jen and I asked her oncologist about our plans to start a family, he calmly replied, "Well, I wouldn't do so unless Dave is prepared to be a single father."
About 50 percent of all people with cancer have a rare type, like the one Jen was fighting.
Time stood still. The danger crystalized — we were in a battle for my beautiful bride's life, and the odds were not in our favor.
We felt every emotion expected. Anger, sadness, confusion, frustration, and especially fear. But we made a very intentional choice to take that fear, put it to the side, and do everything we could to live our lives together to the fullest.
We focused first on Jen's health and learned everything we could about MFH Sarcoma. I was with her every step of the way — for hundreds of medical appointments, six intense surgeries, and twenty different types of chemotherapy. During such a challenging time, our choice to reject fear allowed us to live our best lives. Our careers blossomed, we enjoyed several international vacations, and Jen inspired thousands of fellow patients through her blog and speeches.
When we researched treatment options we learned that Jen was not alone. About 50 percent of all people with cancer have a rare type, like the one Jen was fighting. However, rare cancers don't get the funding they desperately need so effective treatment options are hard to find. The lack of funding felt unfair — and urgent. We didn't worry about everything that can go wrong when starting a new venture. Instead, we jumped in head first and convinced a small group of friends and family to ride stationary bikes with us to raise money for rare cancer research.
Jen Goodman Linn, riding a stationary bike for Cycle for Survival.
(Courtesy David Linn)
From those humble beginnings, Cycle for Survival grew steadily. After starting from scratch, Jen and I ran Cycle for Survival on our own for two years. We quickly realized that if we wanted to help as many people as possible, we needed the best partners. In 2009, we agreed that Memorial Sloan Kettering Cancer Center would take over the ownership of Cycle for Survival and Equinox officially became the Founding Partner. Flash forward to today, and Cycle for Survival has raised more than $220 million! I'm proud that 100% of every donation, yes every penny, goes directly into life-saving rare cancer research within six months of the annual indoor cycling events, which now take place in 17 cities nationwide.
While Cycle for Survival's trajectory was heading straight up, Jen's health struggle was devastatingly swinging up and down. With her incredible spirit and tenacity, Jen would beat the cancer through chemo and surgery, but then it would frustratingly come back again and again. After going into remission six times, it returned with such a vengeance in 2011 that even the world's leading doctors were forced to say, "I'm sorry, there's nothing more we can do."
Those were the most difficult words I've ever heard, by far. I hope no other family has to hear these crushing words.
When Jen died soon after, I didn't know what would happen to me, to my life, and to Cycle for Survival. I do remember making two very important choices at the time. First, I chose to get out of bed and put one foot in front of the other. It wasn't easy. Tears, pain, and grief would hit at any hour of the day or night. I did have a great support network of family and friends who kept me moving forward. One friend in particular changed the route of her morning runs so that I would join her and start getting back to exercising.
My second key choice was to stay involved with Cycle for Survival. At times, it was an excruciatingly difficult decision because I felt the depth of my loss each and every time I stepped into one of the events. However, it was also rewarding and energizing because I could see firsthand how many people it was helping, even though it was too late for Jen.
I began to travel across the country with the Cycle for Survival staff. My hope was to spread the word about rare cancers; along the way I met a lot of wonderful people who shared their stories with me. What I soon realized is that each of us faces obstacles in our lives. For me, it was losing the person who I wanted to spend my life with. For others, it might be challenges with their kids or in their professional lives. The common theme is that we don't have control over the fact that we have to face these challenges. But the biggest lesson I've learned is that we very much do have a choice in how we react.
I made the choice to do everything I can to help rare cancer patients and their families and it has been transformative and healing for me. The small group who rode in the first Cycle for Survival event has grown into a powerful movement of nearly 40,000 riders making a real difference. If Jen were diagnosed today, there are new treatments available– including genomic sequencing, targeted therapies, and immunotherapies – that could help her. Those weren't even options a short time ago. That's the result of funding research.
A recent Cycle for Survival event shows the passion and power of the community.
(Courtesy David Linn)
I also want to share one more choice I made. Remember that friend who changed the route of her morning runs so I could start exercising after Jen died? Well, over the years friendship grew into love, and we're now building a home together and can't wait to see what the future holds for us.
So with all that in mind I ask – when you face those inevitable challenges in your life, how will you choose to react? Remember that even in the midst of hopelessness, you can find choices. Those will be the decisions that define and guide you.
The rise of remote work is a win-win for people with disabilities and employers
Disability advocates see remote work as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike.
Any corporate leader would jump at the opportunity to increase their talent pool of potential employees by 15 percent, with all these new hires belonging to an underrepresented minority. That’s especially true given tight labor markets and CEO desires to increase headcount. Yet, too few leaders realize that people with disabilities are the largest minority group in this country, numbering 50 million.
Some executives may dread the extra investments in accommodating people’s disabilities. Yet, providing full-time remote work could suffice, according to a new study by the Economic Innovation Group think tank. The authors found that the employment rate for people with disabilities did not simply reach the pre-pandemic level by mid-2022, but far surpassed it, to the highest rate in over a decade. “Remote work and a strong labor market are helping [individuals with disabilities] find work,” said Adam Ozimek, who led the research and is chief economist at the Economic Innovation Group.
Disability advocates see this development as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike. For decades before the pandemic, employers had refused requests from workers with disabilities to work remotely, according to Thomas Foley, executive director of the National Disability Institute. During the pandemic, "we all realized that...many of us could work remotely,” Foley says. “[T]hat was disproportionately positive for people with disabilities."
Charles-Edouard Catherine, director of corporate and government relations for the National Organization on Disability, said that remote-work options had been advocated for many years to accommodate disabilities. “It’s a little frustrating that for decades corporate America was saying it’s too complicated, we’ll lose productivity, and now suddenly it’s like, sure, let’s do it.”
The pandemic opened doors for people with disabilities
Early in the pandemic, employment rates dropped for everyone, including people with disabilities, according to Ozimek’s research. However, these rates recovered quickly. In the second quarter of 2022, people with disabilities aged 25 to 54, the prime working age, are 3.5 percent more likely to be employed, compared to before the pandemic.
What about people without disabilites? They are still 1.1 percent less likely to be employed.
These numbers suggest that remote work has enabled a substantial number of people with disabilities to find and retain employment.
“We have a last-in, first-out labor market, and [people with disabilities] are often among the last in and the first out,” Ozimek says. However, this dynamic has changed, with adults with disabilities seeing employment rates recover much faster. Now, the question is whether the new trend will endure, Ozimek adds. “And my conclusion is that not only is it a permanent thing, but it’s going to improve.”
Gene Boes, president and chief executive of the Northwest Center, a Seattle organization that helps people with disabilities become more independent, confirms this finding. “The new world we live in has opened the door a little bit more…because there’s just more demand for labor.”
Long COVID disabilities put a premium on remote work
Remote work can help mitigate the impact of long COVID. The U.S. Centers for Disease Control and Prevention reports that about 19 percent of those who had COVID developed long COVID. Recent Census Bureau data indicates that 16 million working age Americans suffer from it, with economic costs estimated at $3.7 trillion.
Certainly, many of these so-called long-haulers experience relatively mild symptoms - such as loss of smell - which, while troublesome, are not disabling. But other symptoms are serious enough to be disabilities.
According to a recent study from the Federal Reserve Bank of Minneapolis, about a quarter of those with long COVID changed their employment status or working hours. That means long COVID was serious enough to interfere with work for 4 million people. For many, the issue was serious enough to qualify them as disabled.
Indeed, the Federal Reserve Bank of New York found in a just-released study that the number of individuals with disabilities in the U.S. grew by 1.7 million. That growth stemmed mainly from long COVID conditions such as fatigue and brain fog, meaning difficulties with concentration or memory, with 1.3 million people reporting an increase in brain fog since mid-2020.
Many had to drop out of the labor force due to long COVID. Yet, about 900,000 people who are newly disabled have managed to continue working. Without remote work, they might have lost these jobs.
For example, a software engineer at one of my client companies has struggled with brain fog related to long COVID. With remote work, this employee can work during the hours when she feels most mentally alert and focused, even if that means short bursts of productivity throughout the day. With flexible scheduling, she can take rests, meditate, or engage in activities that help her regain focus and energy. Without the need to commute to the office, she can save energy and time and reduce stress, which is crucial when dealing with brain fog.
In fact, the author of the Federal Reserve Bank of New York study notes that long COVID can be considered a disability under the Americans with Disability Act, depending on the specifics of the condition. That means the law can require private employers with fifteen or more staff, as well as government agencies, to make reasonable accommodations for those with long COVID. Richard Deitz, the author of this study, writes in the paper that “telework and flexible scheduling are two accommodations that can be particularly beneficial for workers dealing with fatigue and brain fog.”
The current drive to return to the office, led by many C-suite executives, may need to be reconsidered in light of legal and HR considerations. Arlene S. Kanter, director of the disability law and policy program at the Syracuse University College of Law, said that the question should depend on whether people with disabilities can perform their work well at home, as they did during Covid outbreaks. “[T]hen people with disabilities, as a matter of accommodation, shouldn’t be denied that right,” Kanter said.
Diversity benefits
But companies shouldn’t need to worry about legal regulations. It simply makes dollars and sense to expand their talent pool by 15% of an underrepresented minority. After all, extensive research shows that improving diversity boosts both decision-making and financial performance.
Companies that are offering more flexible work options have already gained significant benefits in terms of diverse hires. In its efforts to adapt to the post-pandemic environment, Meta, the owner of Facebook and Instagram, decided to offer permanent fully remote work options to its entire workforce. And according to Meta chief diversity officer Maxine Williams, the candidates who accepted job offers for remote positions were “substantially more likely” to come from diverse communities: people with disabilities, Black, Hispanic, Alaskan Native, Native American, veterans, and women. The numbers bear out these claims: people with disabilities increased from 4.7 to 6.2 percent of Meta’s employees.
Having consulted for 21 companies to help them transition to hybrid work arrangements, I can confirm that Meta’s numbers aren’t a fluke. The more my clients proved willing to offer remote work, the more staff with disabilities they recruited - and retained. That includes employees with mobility challenges. But it also includes employees with less visible disabilities, such as people with long COVID and immunocompromised people who feel reluctant to put themselves at risk of getting COVID by coming into the office.
Unfortunately, many leaders fail to see the benefits of remote work for underrepresented groups, such as those with disabilities. Some even say the opposite is true, with JP Morgan CEO Jamie Dimon claiming that returning to the office will aid diversity.
What explains this poor executive decision making? Part of the answer comes from a mental blindspot called the in-group bias. Our minds tend to favor and pay attention to the concerns of those in the group of people who seem to look and think like us. Dimon and other executives without disabilities don’t perceive people with disabilities to be part of their in-group. They thus are blind to the concerns of those with disabilities, which leads to misperceptions such as Dimon’s that returning to the office will aid diversity.
In-group bias is one of many dangerous judgment errors known as cognitive biases. They impact decision making in all life areas, ranging from the future of work to relationships.
Another relevant cognitive bias is the empathy gap. This term refers to our difficulty empathizing with those outside of our in-group. The lack of empathy combines with the blindness from the in-group bias, causing executives to ignore the feelings of employees with disabilities and prospective hires.
Omission bias also plays a role. This dangerous judgment error causes us to perceive failure to act as less problematic than acting. Consequently, executives perceive a failure to support the needs of those with disabilities as a minor matter.
Conclusion
The failure to empower people with disabilities through remote work options will prove costly to the bottom lines of companies. Not only are limiting their talent pool by 15 percent, they’re harming their ability to recruit and retain diverse candidates. And as their lawyers and HR departments will tell them, by violating the ADA, they are putting themselves in legal jeopardy.
By contrast, companies like Meta - and my clients - that offer remote work opportunities are seizing a competitive advantage by recruiting these underrepresented candidates. They’re lowering costs of labor while increasing diversity. The future belongs to the savvy companies that offer the flexibility that people with disabilities need.