As Someone With a Disability in America, I Don’t Feel Seen As a Person

A beautiful conversation with brand strategist and advocate for the disabled, Geoff Cook

My Walks in Nature continue!

Walk 14 – A Walk in "Nature"  – Damn that nature is good for the body and the soul!

Walk 15 – Blackacre Nature Preserve and Historic Homestead – The breath of life.

Enjoy, my friends!

I want to republish this interview from December 2022 with my dear friend Geoff Cook. Geoff and I met in our altMBA class in 2021 and became fast friends. I admired his marketing savvy, insight into the nuances of the business of sports, and dedication to the cause of the disabled. In this interview, we delved into all of those topics and much more. It was such a delight to speak with Geoff. I learned a ton from this interview and I know you will too.

I also highly recommend Geoff’s hard, beautiful, and touching essay about his experiences traveling in Germany.  It’s an eye-opening look into his world and daily struggles – and those of so many of our disabled friends, colleagues and neighbors. It really is a must-read.

I should note, Geoff is currently seeking a job in marketing, brand and communications strategy. The organization that hires him will get a total rockstar! (At the time of our conversation, he lived in New York; he now lives in Charlotte, North Carolina.) You can learn more about Geoff at his LinkedIn profile and feel free to reach out to him via email.

Thanks for a wonderful conversation, Geoff!

Tell us your story, Geoff.

That’s a loaded question. I was born and raised in upstate New York, where I am now. I would say I am a wandering soul, a fan of ancient history and language, and sports. I’m excited to use your platform to talk with people about a world that they probably don’t see. This is how we achieve actual change. We have difficult conversations about our life experiences. I appreciate you bringing that to me; that’s the beauty of conversation.

Marketing

I want to ask you some work questions. You’ve worked in marketing your entire career – media relations for the University of Texas athletic department, media relations at Major League Baseball, digital marketing, earned media for large corporate clients, and marketing benchmarking, among other efforts. What is the aim of terrific marketing?

It depends on the stage of the company. My last job was at a 7-year-old startup, so our focus was “awareness, awareness, awareness.” And we did that with “buzzword, buzzword, buzzword.” We tried to convert people into our sales funnel. That was the point of our marketing. But take one of my favorite brands, Nike. Everyone knows who they are; they’ve been around a long time. They don’t want to be one of those older brands which struggle to innovate. Nike’s biggest aim is to stay on the cutting edge – they may not be the very first anymore, but they spend a huge amount of time, effort and money to stay on that cutting edge of technology, social issues and marketing positioning. I think Nike is smart to do that. In marketing or overall business, the worst thing you can say is, “This is how we’ve always done things.” That’s a one-way ticket to corporate death.

What do most marketing experts not properly understand about the world? What’s missing in their worldview?

Oftentimes, marketing gets too siloed. It becomes too much about their own buzzwords, their inside baseball. Companies and entire industries become siloed in their thinking too. We have a hard time getting out of our own way with our jargon. And of course, most customers don’t care about our jargon.

Let’s fast forward 25 years – what does the marketing equilibrium look like? Are we all still going to care about SEO and a few very powerful social media companies? How will effective marketers reach their audience, the right audience?

I’m doing a lot of reading about AI and Web3 now. I don’t know what the marketing world will be in 25 years, but I firmly believe AI and Web3 – or Web4 or Web5 or whatever we get to then – will have a huge impact on marketing. And on life. I don’t want to say it, but I do think we’ll all be much more device-dependent than we are even today. Think how much changed in two years, because of the pandemic. Yes, video conference calling existed but no one used them extensively. Today, from my house in upstate New York, I can “be” in Germany or Britain or Japan or Greece or Peru – all in one day. It’s crazy to think about fast-forwarding 25 years from today.

In 25 years, will the messaging bombardment accelerate and become even more intense? The statistics say the average American sees between 4,000 and 10,000 ads every day. Is that going to continue?

I think there will be a balancing act. Let me explain. Yes, the ad bombardment will continue. But I think somehow the social media part of the bombardment will lessen.

Even as someone who works in marketing and spends a lot of time on social media, I hate social media from a business and a personal perspective. In business, there is always a new platform or algorithm adjustment in existing platforms to figure out. It’s incredibly frustrating. Let me give you an example. Two years ago, when Clubhouse was the hot new thing, I worked hard to get an invitation to figure it out for myself and my company. Getting an invitation took forever. Then once we got on it, we spent a huge effort figuring out how to best market through it. You know how this goes. Clubhouse is now irrelevant – and so all those efforts were basically wasted.

On a personal front, I am not a parent but you are. And parenting has changed so much since the late 90s and early 2000s. The internet that I grew up with versus the internet that you and I are using right now is completely different, mostly because of social media. You and your kids really have to watch out.

There are too many social media platforms out there right now. I don’t know whether some will actually disappear or whether most people will seriously trim their social media accounts, maybe to two or three maximum. But I do think the era of people having 17 different accounts and having so much personal information on all those accounts will go away. And marketers will have to adjust to that world.

Life Experiences With a Disability

Let’s move to a few questions about your life experiences and your advocacy for people with disabilities. What countries are most friendly to people with disabilities, in terms of people’s attitudes and customs?

In my experience, the European people and countries. Europe is old. I don’t expect a building built in the 1700s to be wheelchair accessible. That castle that was built in 1640? There’s no ramp for you to get up? Hello – it was designed to keep people out! For most of history, most people with disabilities like mine didn’t live long. When I was born, I weighed 2 pounds. If I’d been born even 30 years before I was, I wouldn’t have lived long. So for most of history, people and countries and builders didn’t have to take us into account. I get it. I take a realistic approach.

People say Germans are rude. I’m from New York! That doesn’t bother me. But the Germans and other Europeans are always looking out for me, as someone in a wheelchair. Literally every German I encountered – except for one dude at Lufthansa – every random person on the street and everyone in an official capacity at the train station, airport, and hotel, was above and beyond nice to me. In their Human Resources, they constantly ask, “what are we doing in terms of diversity and inclusion for the disabled population?”

Thankfully, I am an outgoing person. If I need help, I ask. Again people in Europe are always nice and helpful. But Europeans have a more open and I’d say fearless attitude toward people with disabilities. And if there’s no one who will help, I go find a policeman – they always help.

Does European law better recognize the rights of disabled people and protect them better than other countries? What’s your experience with different countries’s legal protections for disabled people?

I can speak mostly about Germany and the UK. In those countries, it’s virtually impossible to fire someone with a disability. It’s still performance-based, but companies have to work very hard to find a way to retain someone with a disability.  In Germany, they have special contracts with their disabled employees, which makes firing them extremely difficult. The employer really has to exhaust every single available avenue to retain that employee or find a suitable place in the company.

For housing access, Germany has special vouchers for the disabled, even for non-citizens. If you want an apartment, and I have a voucher and want that apartment, and if it’s wheelchair accessible, the landlord has to give me that apartment. In America in that situation, the decision is basically up to the landlord.

Long term, I want to move to Germany. The legal protections are attractive. Beyond that, I am attracted to the overall mindset they have toward me there. My recent trip went terribly, but I still felt wanted by German society and culture. I felt adopted there. As someone with a disability in America, I don’t feel seen as a person. I’m not seen institutionally or legally or culturally. There are physical barriers and invisible barriers here. No matter what I achieve, I am still held down. I don’t want to say I’m oppressed, because that’s very incisive language. But there are things in place that make living here very different for me and you.

There is a big difference between “handicapped accessible” and “livable handicapped accessible.” Those are two totally different things. Here’s an example. A bathroom may have the legal handicapped bars, but for me, they may be too low. Or the seat may be too low. Or the apartment may be “handicapped accessible” but my electric wheelchair may not fit through the front door. So I can’t live there.

Tell me a little bit more about not being seen in America, what that means and how that manifests in your life.

I’ve never been the woe-is-me type. I’ve always felt that “well, these are the cards I’ve been dealt and I’m just going to bulldog some things in life.” That’s always been my mentality. It will always be my mentality.

But we all break. And I wonder, why is this so hard? I just want to go to work, pay my taxes, vote, and complain about it like everybody else. Do you know what I mean? Why is housing so hard for me to find? Why is finding work so hard? Why is keeping work so hard? I understand some things happen in the course of business. I lost my last job because of business – it was nobody’s fault.

But keeping a job is so hard. I worked at one company – they wanted to be able to say they hired a disabled person and one who also happens to be half-black. So, check and check. I understand that’s part of the game and make no mistake, I will use that to my advantage. But they simply weren’t interested in giving the tools to succeed.

The older I get, the more I realize that my margin for error in decisions I make is very small. Where I work, where I travel, people I date – those decisions have to be right or I can get stuck for a long time. My recent experience in Germany – I couldn’t stay because a few things in the unit were too high or too low for me by a few inches. Inches! It took me days to get out of that bad situation and my new situation back in the U.S. is fine, but it’s not the situation I want to be in. It will take me months and may take me much longer to get back into a good situation – one that I want to be in.

Why is this so hard? Why is every step so hard? I just want to find and live in a place where I can be the best version of myself – at work and in the community.

Can you tell us more about small things being hard? In your article, you mention a few things being too high or too low by a few inches, and that caused enormous hardship. You also mentioned the difficulty of traveling with your electric wheelchair.

Those are great examples because I’m a wanderer. I’ve lived in five states. I have friends all over the place. Can’t wait to go to Oregon later this year to see one of my best friends. Can’t wait to go down to Louisville. I get around in spite of my logistical challenges.

Even the room I’m in right now –  I’m sleeping in my brother’s old bed and it’s high. My chair can elevate, so I raised the seat so it’s easier to get into bed. But I can’t elevate it too high because I won’t be able to get out of bed.

In a hotel in DC once, the bed was way too high. I called down to the staff and they came up and helped put me into bed. And on the toilet – it was a standard toilet but it seemed like a kid’s toilet. In Germany, I used my friends at Wheels of the World to help plan travel. They had no idea about the height of the bed in my room. How could they? The hotel staff tried to raise my bed by placing pillows under the mattress so I could get in and out. It didn’t work. For a couple of days they did put me in bed and put me back in my chair. But I knew it wouldn’t last long, because management then said they had to stop because of liability. That always happens.

So I had to spend six entire days in my chair. It reclines a bit but nothing like a bed. So I got no rest. I was supposed to stay in Germany for another month, but I couldn’t live there like that. So I had to get home. Except I had given up my apartment in Atlanta so I had to find a temporary solution. It’s back to living with my parents. I hope it’s temporary.

Tell us about your wheelchair and traveling with it.

My number one fear when I fly is not what happens to me. If something happens to me it’s just my time. My biggest fear is “what shape will my chair be in when I get off the flight?” In the last eight weeks, I’ve been on 8 planes. That’s a lot of worry and stress.

My wife and I hate checking bags. We carry on. But if we did check a bag and it was totally lost, we’d be out some clothing. It’d be a hassle, and it may dampen that trip a bit. But it wouldn’t change what we could do on the trip or significantly impact our lives. But if an airline messes up your chair, it sounds like that would be life-changing in a major way for you.

Absolutely. There was a recent statistic that airlines damage 25 wheelchairs per day – or more. It’s very traumatic. It may have been damaged before you arrive at your final destination. The airline is responsible for it. They do fix it, but it’s a process. It can take weeks or longer. The airline may not have the parts for the repair on hand. Maybe they have to loan you a wheelchair. You’ve used a loaner car or rental car? It’s not the same as the car you own, right? The angles are a little different, the controls are in a different place, and so on. Same with a loaner chair. It’s not the same as my chair and it may not have all the functionality I really need.

So when I fly, my number one fear is my chair. As I am talking with you, this isn’t a small, simple wheelchair. It’s a $30,000 wheelchair. It’s like I am sitting in a car all day. It’s easy to damage them and can be hard to fix them.

If the wheelchair is damaged, what happens?

The short version is you go to the baggage office, usually near the baggage carousel. Usually, you’re with the person who physically helped you get off the plane. At the baggage office, they open a case. You fill out a whole bunch of forms. Someone from the airline comes out to evaluate the chair. They give you an estimate of when the chair will be repaired. And if you’re not in your final destination yet or you’ll be returning home before that estimated date, you have to figure out logistics – are they keeping the chair now or when will they come to get it to repair it? It can get complicated. Sometimes, while staying respectful, I have to be firm in noting my needs. If they say the repair part won’t arrive until Wednesday, but I need to leave Monday for another part of my trip, I need that wingding here now!

Of course, for part of that time or all that time, I don’t have my chair. So I may not be able to do everything I had planned to do on the trip. If I visit you in Louisville, and we’d planned some day out with your girls, if that involves something in which my chair can accommodate the activity but my loaner chair cannot, I guess I am not doing that activity.

If the chair was damaged along the way, I have to stay with my chair even if it’s not my final destination. In that case, I have to get a hotel – which of course I hadn’t planned for. And the hotel isn’t paying for that hotel – I am.

Yes, when I travel, I worry mostly about my chair. It’s a very big concern.

Let’s say you could wave a magic wand and make something better for disabled people. One thing, one way. What would that be?

I’m a kid of the 80s. Professor X of the X-Men was my childhood hero, for obvious reasons. He was the first person with a disability in a wheelchair who I saw being a badass leader. Wave a magic wand and I’m Professor X!

Seriously – I would come up with a more sustainable method of transportation for disabled people. I’m a member of Atlanta Paratransit. They pick me up at a certain location and they bring me to a certain location. Like Uber, but it’s an offshoot of the bus system. Atlanta has a system, Charlotte has a system, Louisville has a system, and every city has its own system. When you go to a new city, you have to find a doctor and fill out basically the same paperwork certifying you are mentally or physically disabled.

I would make it so there’s a national or, dreaming big, international database. If you are disabled according to DSM-4, which is the standard everyone uses to define physical and mental disabilities, you are disabled. If the city of Atlanta deems you disabled, Charlotte recognizes that status. And if the U.S. recognizes someone as disabled, then Germany does too. Once you’re in, you're in. One ID allows you to access all these different systems easily. This would streamline so much in my life.

Just like anybody else, I deserve to go where the opportunities are. If the opportunities are in Kentucky for jobs or a better overall lifestyle, I deserve the opportunity to go to Kentucky. Just like anybody else.

What’s something that being disabled has taught you about the world or life that people who are not disabled don’t know or appreciate?

I learned from a very early age the importance of advocacy for myself. I give my parents a lot of credit here because I was involved in my medical decisions from a very early age – 13 or 14 years old. Now, obviously, my parents made the final decision because I was a minor. Often times doctors wouldn’t talk to me. They would talk to my parents, usually my Mom because she was most often there. My mom would tell the doctor, “You’re operating on him. He’s in the room too. Talk with him about this procedure.” And my parents asked me, “Geoff, they’re going to operate on you. They’re going to do this. The recovery looks like this. How do you feel about this?”

I joke that I am from New York so I am loud and aggressive. I learned very early that I had to use that loudness to advocate for myself. If you don’t advocate for yourself at work, in life or personally, no one else will do it for you. If that involves ruffling some feathers, you have to be willing to say something. You have to be willing to ask for help.

Like physically getting around places. I have a radar that’s built for elevators. I see angles differently than most people; I see space differently; I see gaps in space differently. Sometimes I have to ask random people on a subway platform for help – “Can you help me jump this gap, because I’m not going to make it otherwise?” It forces me to interact with the world. I can’t pick my bag off the baggage carousel. I have to ask a random stranger for help.

That’s the biggest takeaway. The number one blessing and curse of being physically disabled is that it has given me a different lens to view the world.

What else would you like me and the readers to know about disabled people or the cause of people with disabilities?

I’ve thought a lot about this one. Succinctly – just ask us. So many people are afraid to offend us. I understand that sensibility because I’m guilty of it as much as others are. Include us in the process – in all processes. When you’re designing a new bus, ask us, “Does this layout work for you?” In my marketing world, ask us, “How do we make it easier for disabled people to find the information they need on this site?” I would rather you ask me a question and you give me the opportunity to say, “Russell, I’m uncomfortable answering that.” At least you gave me a space to say I’m uncomfortable and convince you why I feel uncomfortable.

The worst question is the one that goes unasked.

We need to become better as a society about having difficult conversations and going into really vulnerable spaces because that’s the only way crap is going to change. If you’re renovating a building, let’s talk about what can be done for disabled people within that budget. What can we do within reason? We want to have those conversations. Ask us.

Thoughts on Sports and Athletes

Let’s move on to a different topic. I want to ask a few questions about one of your great passions – sports. Who is your favorite Texas Longhorns football coach of all time and why?

Well, Darrell Royal, because he’s the GOAT. I’m contractually obligated to say that, but he really is, though. I was around Texas during the end of Mack Brown’s tenure and Charlie Strong’s tenure. Coach Strong’s didn’t go very well, to put it mildly. But he was always cool to me. I served in the Texas Athletic Department under, at the time, the winningest coaching college baseball coach, Augie Garrido, who was kind of rough around the edges and a no-nonsense guy to everybody. That really prepares you for life as well. You don’t have to like everybody you’re around, but you respect them and do your job well.

Which team will win the college football playoff this year?

Anybody but TCU because I hate them.

How about the Super Bowl?

I’m going out on a limb here and say the San Francisco 49ers.

Wow. Whoa. That is going out on a limb man.

That offense is nuts.

So wait, who is your team in the NFL?

I’m a Giants fan.

In baseball, it’s the Mets?

Yeah, I’m a Mets fan.

When will my beloved Washington Nationals be relevant in baseball again?

Probably long after we’re both dead.

Is baseball going to be a top professional sport in 50 years?

Sadly, no, not at all.

Really? How come? Why?

Because it’s slowly dying. It’s not going to die tomorrow for sure. But the younger generations are playing baseball in smaller numbers. Baseball doesn’t do a good job of marketing its stars at all. Kids don’t grow up wanting to be the next Mike Trout because they don’t see him plastered on billboards and video games. Baseball does a horrible job of marketing its stars. And there are a ton of super young stars in the game – the Juan Sotos who are young and exciting.

You just had to say that name, for example, didn’t you? You had to put that stake in my heart?

I’m a baseball degenerate. Even in the off-season, I’m online, checking out MLB trade rumors a couple of times a day. Like, I’m reading all the things and I watch probably 140 games a year. But baseball is really hard to watch because it takes three or four hours or more. I like Formula One, too. But Formula One is over in two hours and it’s awesome. We get all the excitement we can handle, and you wrap a bow up, it’s over in two hours. But you get a freaking Yankees and Red Sox game, that’s five hours right there. Baseball has tried to fix it. Like I said I’m a degenerate. You’re into it too. But there’s not enough of us. And going to baseball games is really expensive. So it’s a multi-layered issue for sure.

What is the smartest thing baseball could do to better market its young, hot, kick-ass stars?

Baseball needs to find where the kids are on social media and find ways to engage the younger generation there. Baseball needs to engage all people as fans. Most fans are older, white and male. But most baseball players are not those things. Shocker. More people should be fans, but baseball isn’t attracting them.

Why isn’t soccer more popular in the U.S.? It’s risen in popularity in the last 20 years, but compared to the frenzy in other countries, it’s not nearly as popular here. Why?

As my mom pointed out the other day, we have so many other options. American football is ours. It’s a bedrock culture. Baseball is ours, and it’s a bedrock item of culture. I was watching Germany play soccer yesterday, and I was conversing with my tutor, who is German, but she lives in Florida. She had just talked with her grandparents in Cologne. The whole city had shut down for the game. 8:00 pm and the entire city, except emergency personnel, is watching the game. That’s what soccer in Europe in general is. Find a bar, find a house. That’s what we’re all doing. Any green space that has a TV and thousands of people are watching a gigantic screen.

Who is the most overrated athlete today?

Oh, boy. I’m trying to remove personal bias as a fan. Overrated football player? Zeke Elliott. Baseball player? I can think of about six, but I won’t name any of them because they might see this interview and hate me!

The most overrated athlete is probably Cristiano Ronaldo. Yes, he’s still very good, but he’s my age, and he’s not worth $700,000 a week. Unreal – $700,000 a week. You could still be very, very good and still be overrated.

Who’s the most underrated athlete?

There are so many. There are so many young, up-and-coming baseball players that I think the world of Adley Rutschman. He was the number one overall pick a couple of years ago. He’s already playing with the Baltimore Orioles. He’s a catcher, which is a difficult position. He’s so good. I’ve been a fan of his since he was in college. He was the best player in college when he was at Oregon State. He’s awesome to watch. At the pro level, I would say he’s the most underrated athlete for me right now. He doesn’t get a lot of press because the Orioles are young and he’s in Baltimore. But he is crazy good; if he was in a major market, he’d get a ton of attention. He’s only 24 years old.

Geoff, this has been awesome. I appreciate it.

Thanks for having me.