How Going Blind Allowed Me to See Empathy

When I was diagnosed with Retinitis Pigmentosa, RP for short, and I was told that I was going blind, I thought my life was over.

The first things that went through my head were, what girl wants to be with a guy who can’t see, what kind of job could I have if I was blind, and where could I live if I couldn’t drive? These questions and many more constantly consumed me, and my actions even caused me to fail out of college.

For me, the idea of having a disability was so foreign. I had never met a person who was blind, or identified with having a disability, so I had no idea how anyone lived a full life or how they maintained a career (or even successfully completed school!) So, I vowed to keep my disability a secret for as long as I could. And that’s why I believed, after seventeen years from that dreadful day when I was first diagnosed, to the time my sight had diminished to the point where I could no longer see the computer screen, my career was over. The fact that I had eventually figured out a way to graduate from college and even receive an MBA, worked all over the globe, started a multi-million dollar startup, and even climbed a mountain, meant nothing now. I was done at the ripe old age of 36.

That all changed when I heard about a software developed at a data science company called SAS, which was designed to help people who were blind visualize graphs and charts using sounds. I had struggled throughout my career in finance analyzing Excel files, so I thought this was awesome. But the coolest thing was that it was designed by a computer scientist named Ed Summers, who had the same eye condition as me and lived in my hometown of Cary, North Carolina—the same place I never thought anyone who was blind could ever live. Up until this point, I had never met another blind person, and I knew I had to meet him. I tried for months to get in touch with him, without any luck.

Finally, my wife said, “If he can live in North Carolina, why can’t we?”

It was at that moment we decided to move back home. We were living in the Washington DC metro area, had just had a baby, and purchased a house—all of which are not cheap! On top of everything, I had lost my job, and we were living off my wife’s single income, and we were barely scraping by. Now more than ever, we could benefit from the love and support of our family.

When we found a house online, we called my folks, and they got so excited. Before I could even finish my description of the place, I heard a car engine roar and my dad’s cell switched to Bluetooth. “Uh, dad? Where are you going?” I asked.

“To see the house, of course!”

My wife and I snickered at my dad’s excitement—it was cute!

Within just a few minutes, my dad started calling out a name. Loudly. “Morris! Morris!”

“Dad? Who’s Morris?” I yelled back. “What are you doing?”

“There was a blind guy walking on the sidewalk behind me,” he said. “I thought it was that Morris guy you’re trying to get in touch with, but I guess not. He looked at me like I was crazy.” I heard the engine pick up again as he drove away.

“Dad,” I sighed, “His name is Ed Summers. But please don’t go back there—leave the guy alone. He’s probably not even Ed Summers!”

Too late. My dad had already completed a screeching U-turn. That poor stranger, I thought. He thinks my dad is stalking him. Even though my hope was minimal at this point, I still felt my heart flutter just a bit when my dad stopped his car and said, “Excuse me, are you Ed Summers?”

A brief pause. A moment to still be optimistic. I waited.

“Yes, I am.”

That serendipitous encounter changed everything for me. I ended up coming down the next weekend to meet Ed, and a thirty-minute conversation turned to three hours. He introduced me to the world of accessibility, and he showed me that my dreams of becoming an executive weren’t dead. But most importantly, he taught me that I didn’t need to be ashamed of my disability.

The moment I was able to own my blindness, and not be ashamed of it, it was like a weight was lifted off my shoulders—it was freeing. This newfound freedom was a feeling I had never felt before. It made me want to share my story with as many people who would listen, even employers who I previously thought would see my disability as a liability. The more I shared my story, the more I realized that there were many leaders who were like me before I met Ed, who hadn’t spent meaningful time with people with disabilities or taken the time to have a conversation and understand the barriers that people with disabilities face in their job search and employment. It wasn’t that they were intentionally trying to keep people with disabilities out, but they didn’t know what they didn’t know, and in their time with me, I saw them gain a new level of empathy and became more purposeful about their accessibility and inclusion practices.

This was in full display when I was on a prospective client call with a large organization that had recently hired someone who was blind. The employee was facing several accessibility challenges in their day-to-day activities and was not able to fully participate in their role as an economist on the team. The CTO of the organization believed that it wasn’t the job of the new employee to address these accessibility challenges themselves and wanted to engage with a third-party vendor who could provide services to help remove these barriers.

That’s why my company, Ablr, was recommended.

Our mission at Ablr is to remove the barriers that hinder people with disabilities from all aspects of life, which includes employment. We truly embraced the disability mantra of “Nothing about us, without us” when we built the team. That’s why we made sure that we employed people with lived experiences and, with feedback from the team, we knew there were three key areas we needed to address if we wanted to achieve our mission:

Eliminating the digital divide, which we do through our digital accessibility services.

• Eliminating the digital divide, which we do through our digital accessibility services.
• Changing the mindsets of people and organizations, which we do through our disability inclusion trainings.
• Creating pathways for employment, which we do through our workforce development.

I typically didn’t join prospective sales calls, but since the engagement was focused on helping to onboard someone who was blind, I was eager to be part of the call. I have felt the same challenges throughout my career, without having any support from anyone, and engagement like this was very much aligned with how we support our clients. The meeting was virtual since folks were calling in from all over the country. On the client’s side, the CTO was joined by others on the technology team, but also someone from human resources. We were using the Microsoft Teams platform for the call, but there were no dial-in details, so participants were required to join through the app or the online experience and were not able to call in using a phone.

Once the call began, the person from the client’s human resource team asked if the meeting could be moved to Zoom, where we could also include dial-in details, because she was unable to hear people on the call. She had never disclosed that she was hard of hearing and benefited from being able to call in using a phone handset.

Although they’d worked together for several years, the CTO had never realized that the human resource person was showing her face on video but listening to the call through the phone. Because this call didn’t have what she needed, she was outed as someone with a disability.

To accommodate the request, Zoom details were shared in the chat function on Microsoft Teams so people could join the new meeting. At that moment, I asked a member of my team to kindly email me the link to Zoom. When the CTO heard my request, he asked me why I requested the details be emailed to me, since it was shared in the chat. I then explained to him that since I was blind, and use an assistive technology called a screen reader to navigate my computer, I sometimes have trouble accessing the chat functionality on Microsoft Teams, and that it would be quicker for me to have it emailed to me.

He had never thought about how people who are blind, or hard of hearing, used various virtual video conferencing platforms, and it was this encounter where he gained a new level of understanding and appreciation for what it meant to be accessible and accommodating. And, without hesitation, the CTO made the decision on the spot to enroll Ablr to support their organization.

The fact that Ablr is made up of people with disabilities, with over 70% of the team identifying as having a visible or invisible disability, is why we were selected. We can empathize with the potential candidate who is blind and applying to a job online when the website isn’t accessible, or with the candidate who has a cognitive disability and requires additional accommodations during their interview. We can even understand why these candidates might not disclose their disability, in fear of the employer seeing this as a liability and being denied the job as a result. We can do this because we have shared lived experiences and have faced similar challenges in our own lives. I know this feeling myself firsthand!

Although no two people can claim to fully understand what another person’s lived experience is like, let alone how a person with a disability you don’t have experiences the world, empathy for others with disabilities can be learned. This can be done by becoming aware of your own biases and learning to set them aside, listening to others without interruption, asking questions respectfully and being curious to learn, and intentionally engaging with people.

You can foster this type of learning and experience by participating in or launching a disability Employee Resource Group (ERG) at your organization. These are employee-led groups that help create a supportive community of employees who unite around a shared identity. And if your organization doesn’t have an ERG, you can invite guest speakers to come and share their stories or find ways to collaborate with organizations focused on employing people with disabilities. Or, best of all, you can proactively work with a disability inclusion and accessibility organization, like Ablr, which employs people with disabilities to evaluate your employee experience to ensure that it is accessible and accommodating, so that you can then successfully recruit and onboard new team members without any hiccups. These are just a few ways that I’ve seen proximity build empathy.

I challenge you to find your own direction to build a sense of belonging and a culture where all people feel free to disclose their full identities. Not only will you gain a new level of understanding of the people on your team, but you will create a feeling that the people on your team will never forget, and that is priceless!

ABOUT THE AUTHOR

John Samuel is the CEO and cofounder of Ablr, a disability inclusion and accessibility business working to remove barriers that hinder people with disabilities from all aspects of life. In college, he was diagnosed with retinitis pigmentosa, a genetic and degenerative disease that caused him to lose his eyesight. After struggling to belong and succeed in the sighted world, John now empowers both individuals and organizations to overcome accessibility challenges and build more inclusive environments.

Learn more at www.johngsamuel.com.