#26 Aubrie Lee: From rare neuromuscular dystrophy to Stanford engineer, Google and building disability communities
Brand Manager and President of the Disability Alliance at Google, Digital Artist, Previously Engineering and Product Design at Stanford
Hi! We are Pol Fañanás (VC at Kibo Ventures) and Gerard García (Founder at Deale), two friends passionate and curious about tech, startups, and VC sharing views from exceptional people creating the future. Welcome!
Aubrie Lee is a Brand Manager at Google, where she have been for 7+ years in various roles in the Marketing team and more recently also as President of Google’s Disability Alliance, a Google employee group for people who care about Disability inclusion with the goal of improving contributions of disabled people to our workplaces and economies, making disabled employees feel welcome and supported, and embodying the principle of “Nothing About Us Without Us”.
She is also an artist at heart with special love towards digital art and awards such as the 1st place in Stanford’s Urmy-Hardy Prize in Poetry, as well as a disability activist fighting for change so all people with disabilities can have a dignified life and be proud of who they are.
Aubrie earned an engineering degree from Stanford University’s Mechanical Engineering department graduating with honors.
She was born with a rare form of muscular dystrophy where the more she uses her muscles, the weaker they get. She is disabled and proud.
Summary
👤 Story: disability, struggle, community, Stanford, Google
🥇 Win: disabled pride besides challenges, helping others
🚫 Fail and lesson: struggling w/ easy tasks, using tech to improve
🚀 Great founder: 1st hand pain linked to fire, top execution
💸 Great investor: disability focus
📈 Markets: disability in arts and entertainment, accessible travel
🦄 Startups: All Wheels up, NMD United, The Kelsey
👍 Investors: n.a.
📖 Books: “Disability Visibility”, “Thinking in Systems”, “Potter Who and the Wossname's Thingummy”
🔥Wildcard: how to improve the live of people with disabilities
What is your story?
When I read some of your Views posts and specifically this question, I thought about how I could explain my story properly, since it is not a very easy one but I do not really want to sugarcoat it neither.
I grew up in California in a family pretty linked to Silicon Valley, starting with my grandfather who was an electrical engineer and moved here to work on silicon chips, so we could say in some sense is part of my family history.
My father is a heart surgeon who also likes art, and since me being a little kid he showed me to draw and I felt in love with it. As I grew up I loved art more and more, and started thinking of myself as an artist. That is a big part of who I am.
But there is more, when I was a baby my parents noticed I could not close my mouth so I could not do things apparently as easy as saying mama, while also they realized I had a hearing problem. Then as a child in school, kids starting noticing too the fact that I couldn’t move as they moved nor hear, which was not bad since that helped me not listen to uncomfortable things they were saying to me. Consequently, it didn’t take me very long to see I was different from most people and I fell back into art and getting good grades - if others will see me as different, let’s make it exceptionally different.
Eventually, I got diagnosed with a severe and rare form of neuromuscular dystrophy and in high school, I joined a program for students with disabilities. However, when I entered the room and saw other people with disabilities, in wheelchairs and all that stuff, my first reaction was “I don’t belong in here”. I spent my whole life trying to prove I could be a fit for the abled majority, trying to earn their respect and love, and now I had to be there with the disability label? No way.
I struggled significantly and it took me a while, but finally I found myself among other people who are outcasts, outliers. That forum was a turning point for me and helped me go from rare minority to welcoming majority, going from shame to finding a beautiful community and later on committing to building new communities to help more people with disabilities to the point where we can say we are disabled and proud, there is nothing to be ashamed of and this is who we are.
Your substack is all about startups, investors, and building the future, and my views on my disabilities is that they are my course towards the future, the nature of my dystrophy is that all deteriorate over time and I get weaker, so I can not afford to keep doing the same. I must change, innovate and find new ways to interact with other people to keep working in tech, creating my art and living.
I said that Silicon Valley is in my family history, in my blood. Also change is in my DNA, my genetics are mutated, they changed and it is the core of my future. A future where I can contribute to disabled people living a decent life, a future where I can not only survive and cover basic needs, but also achieve my highest dreams. There are so many things I want to do. Not just disability activism but also tech and art. I want to be an activist because I feel I can not just sit by and allow the world to continue on this status quo os ignoring the disability community, but I am an artist because I feel is who I am in my soul. If I could live in a world where I didn’t have to worry about fighting for access, I believe I’d spend my day making art projects.
I try to embody this in my studies and work, I have a Bachelor’s Degree in Engineering focused in Product Design, from Stanford University and I currently work at Google as Brand Manager, where I had the opportunity to push initiatives for the disability community.
What is the biggest win in your life?
Finding myself and learning to be proud of my identity as a disabled person is one of my biggest wins, specially in a world where disability is so negatively viewed to the point where for instance many villains in movies tend to have some type of physical or psychological disability, where there are so many aspects that end up in people with disability being left behind, when half of covid deaths are from disabled people not just because our bodies but because society force us in some way or another to live in segregated institutions or does not prioritise efficiently helping us before it is too late…
Given all the ways society tell us we are not welcomed, still being able to find a way and be proud of who you are, it is something important for me.
But it is not just about me being ok with myself, there are more than 1 billion people with disabilities around the world, but most of them unfortunately have not found the disability community and have not learned to be confident about it. So for me is also a win to learn the importance of helping create spaces for others, helping other people with disability feel as worthy as they truly are.
Specifically, thanks to having a good job (which is rare since unemployment and poverty rates for disabled people around the world in developed and developing countries is double of those not disabled) I pushed for the creation of communities for people with disabilities that can take concrete action to make our lives better. For instance some people with disabilities need a lot of personal care to the point where I can’t use safely the bathroom because the difficulty of transferring myself in and out of my chair, some can not even drink water by themselves, etc. So other employees with neuromuscular disability and I advocated for a personal care attendant program at Google, and even though it was a fight that took long time and we heard many noes, I learned that when you try to change the status quo you are going to face a lot of reject and if you have a strong good why, you should not take that no with you.
Eventually we succeeded, new employees with disabilities came by afterwards and where very happy and thankful to us about it (which was amazing to see) and even though I wish I didn’t have to say it, being able to use the bathroom at work was a revolutionary win. We just want the same dignity that every human being can have and the opportunity to fight to help others, against a world where not everyone has that privilege.
What is the biggest failure and lesson?
I find this to be a really important question and before answering I’d like to express a couple of things, first that I am aware I’m pretty unusual, and second that my answer probably has to be seen under the light of this concept known as antifragility, understood as a system that responds to stress by improving, not by breaking (fragile system) or by returning to its original form (resilient system).
That being stated, sometimes I think that my biggest failure is being the human that I am, maybe even feeling more like an animal at moments. Every day I wake up and I can’t get out of bed fast and I need to summon major motivation to accomplish the simplest tasks, it is a failure. Every time I am frustrated by something or angered and I respond without thinking, it is a failure. Every time I feel like trapped in some type of animalism, it is a failure.
I have done a few interviews and I tend to not get so deep, I am conscious about this not really being super sexy to say, but that is what I honestly think.
I try to overcome this failures through cultivating a strong internal fire, thinking deeply about purpose in life, personal ambitions, drive - you name it. I have my life plan where the marketing professional, the artist and the engineer, everything comes together to face this challenges.
And I believe all of this gravitates around the power of technology and how I can leverage external tools to improve my life and be able to significantly help those around me in similar situation. Becoming more machine to win the fight against the flaws of my humanity and consequently being able to achieve more and have a superior positive impact in the world, would be a big win for me. Not being there yet is a temporary failure.
What is your description of a great founder?
When I was at Stanford I saw how much they cared about entrepreneurship and the effort they put on curating a really exciting ecosystem to act as catalyzer for new founders to be created, and after meeting with a lot of people there and asking a bunch of questions, what I found is the best entrepreneurs tend to have experienced first hand something in the world that does not work so well and could be done better, something that ignited a fire of passion to improve a concrete situation linked to an extreme drive to execute.
What is your description of a great investor?
I like investors that are focusing on helping build companies that dramatically improve disabled people lives. I think more VCs can act as allies and I hope for more relationships being built between disabled entrepreneurs and investors to the point where it can materialize into more investments flowing into this direction.
It really hasn’t happened yet in a big scale, that could mean there haven’t been enough disabled founders and investors or that the model is simply not a match for VC and returns are not there, but I think the best way to figure it out is to get together and try. Whoever is committed to do that is for me a great investor.
What markets are you most interested in?
I am interested in disability in the arts and entertainment. I think if we can change how the public sees and treats disabled people we can end up having a superior improvement in this area so I like how stuff like films, music or other forms of entertainment can honor disability culture and inspire pride. We do have some examples of disabled superheroes but it is far from being enough.
Another market I like is travel with an accessibility angel. What people like Srin (one of your early guests at Views) did building an accessible travel startup and being acquired by Airbnb is amazing and I’d love to see more things following this angle. It is very difficult to travel when you have a disability yet is something so importan to have that freedom. I find super exciting the opportunity to unlock this privilege.
What startups do you like and why?
All Wheels up. Right now air travel is a pretty horrible experience, a big problem for disabled people and they are working to improve accessibility and provide more freedom as a result.
NMD United. Its board is 100% people with neuromuscular disabilities. I’m on the board and am proud of how we give direct grants to help adults with neuromuscular disabilities afford things like wheelchair equipment and medical supplies.
The Kelsey. Really interesting project innovating in accessible housing for disable people with the vision of building more inclusive communities. I’m on their board and like their mission very much.
What investors do you like and why?
Unfortunately based on what we have talked previously I can’t tell you, not even one. Maybe that is a bad signal of the true focus on inclusion but also how people like myself should do something about it and build more bridges.
What books do you feel everyone should read and why?
“Disability Visibility” by Alice Wong. Collection of contemporary essays by disabled people, from activist Alice Wong. It is an important book for me.
“Thinking in Systems” by Donella Meadows. When I was a kid I loved reading but school eventually killed my love for books. Thankfully that loved came back to life and this is a book that contributed. Basically it takes systems thinking out of the realm of computers and equations and into a concrete skillset useful in the tangible to make sense of the complex world of today.
“Potter Who and the Wossname's Thingummy” by ForrestUUID. I’ve never read something like that but it ended up being quite delightful. Between Harry Potter and Doctor Who. I love languages and having fun with words, so I truly enjoyed it.
WILDCARD QUESTIONWhat could we do to improve the lives of people with disabilities?
If I had power either in public or private sector, I think I’d focus on raising our standards right now.
We need to build on key cornerstones such as the Americans with Disabilities Act, to make disability inclusion required at least to a fundamental level where standards that allow a dignified life to happen for disabled people can exist - promoting access to spaces, schools, employments, etc. Without this act I wouldn’t be here and I believe it is time to improve and scale this type of initiatives.
However that is not enough, I don’t think the way to go is to simply force people to do it. We need to go beyond this and build communities of individuals who want to do the right thing.
If you are disabled I say please find a disability community because it will help you navigate the challenges and also find your own way to do disability activism because we must work together to amplify our voices. If you are not disabled I’d say help these voices be heard. If you go to a restaurant and is not accessible as why even if you are not disabled, if you get a linkedin message from a recruiter ask about the company’s disability accommodations, if an opportunity to create better laws exist, lend your efforts, call your representative, send letters and show your support.
Engaging with disability culture as an ally is important in this process, so I’d also recommend to do research on it. For instance if you want to add some link to a post do an hyperlink do not copy and paste a normal link to it because people using a screen reader to navigate the page are going to have a pretty bad user experience.
Life as a disabled person is a triple tax, physical inaccessibility, social exclusion and advocacy labor. Let’s unite and fight for change.
Wonderful to talk with you, muchas gracias!
Hi, Pol writing here just to say that this Views edition is dedicated to Marta, a lovely girl and great friend of mine who had a rare neurodegenerative disease causing severe disability and who passed away a couple of years ago.
In case someone would like to help the foundation supporting families affected by this (who need big help, receive very little and truly move the needle) you can do it here: