Chris Downey - Part 1

Chris Downey (on the left) and Carlos Mourão Pereira in New York City, October 2009 Chris Downey is an architect, has been for more than twenty years. His life changed, and as he puts it, his "adventure began", in March 2008 shortly after he had surgery to remove a brain tumour. On the second day following the surgery (the tumour had been removed) his vision began to fail. Roughly five days after, everything had gone dark. Ten days following the operation he was "in blackness" and was told by the doctors that nothing more could be done.

Although his life changed dramatically at that point, he had no intention of changing his chosen career. There are only a few architects in the world who are blind – Chris is one of those exceptional people. Carlos Mourão Pereira who lives in Lisbon is another – Chris and Carlos met up in New York City.

I learned about Chris through a YouTube video, then read everything I could find about him and looked for a way to contact him. We have communicated by email and spoken over the phone. Chris's story is presented in a 'Question' and 'Answer' format.

(This is the first part of a two-part story)

Chris's Story: In Conversation

Realizations & Challenges

Q: What was the biggest revelation you had when you lost your sight?

A: Thanks for starting with an easy question! As I had never given the prospect of sight loss much if any consideration, there were more than enough major realizations. Perhaps one of the greatest is one of the most counter-intuitive. Most people I spoke with, especially early on, thought that losing sight as an architect would be the "worst thing imaginable". But, it has occurred to me that the architectural education is the perfect education if you should lose your sight. It may not be easy to be an architect without sight, but the education, training, discipline and process are perfect – or at least that's my experience. More than learning to design buildings, you learn the creative process. You learn to appreciate and value alternative ways of looking at things. You learn the technical rigor to make things work but also the artistic finesse to find beauty and delight in whatever problem or challenge comes your way.

The architectural education is also largely about problem solving which is essential without sight or with other disabilities. Most of all, you learn to have confidence in the greatest challenges and the hardest problems because the resulting solutions typically lead to something truly unique and wonderful. These challenges push you out of your comfort zone and into familiar, if not scary territory. Often the best and only way to success with a really gnarly problem is to embrace it for all it's worth and to make it resonate with surprising beauty and grace. I didn't initially think of it that way but quickly realized that I had slipped into "designer think" and applied the same rigor and passion.

Also, as an architect, you learn to be hyper-aware of your environment – you really study the world around you not only as a cultural expression but also as a function of how things work, how things go together, along with a rather vast visual collection of images of things you observe. It's great training for learning the environment when you are blind only it's applied in other non-visual sensory methods.

Q: What are the "outsights" you mention in one of the YouTube video presentations you've done?

A: The word "outsights" was a gift from a guy back stage after my first TED-X talk at the University of Chicago. He was a branding and PR guru who had advised Clinton. He came up to me after to say "OutSights! that's what you give us".

Q: Chris Downey and his son Renzo at a baseball game What was your biggest initial challenge and how did you overcome it?

A: Quite frankly, the biggest was patience. I wanted to get back at it as quickly as I could, get training as quickly as I could, and return to full functioning as quickly as possible. It requires a lot of patience, a lot of tenacity, and being aggressive – passively aggressive, but in a different way. Waiting for training, for things to happen, and you really have to be patient. The moment things come in line you have to push on it. Patience becomes a bigger part of your daily life. It was really hard to be patient and then 'take off' when it was time.

Q: You clearly have a positive outlook on life and a good sense of humour. Have you always been a positive person? Where did that optimism, strength and spirit come from?

A: It's just an attitudinal thing. It's something I grew up with, and it is even stronger now. We have so much control of our own spirit just by having a positive attitude. There's always more than enough to be frustrated by, that's the easy part. Being positive is much more empowering and enjoyable. Making more of the positive overwhelms the negative. It's a conscience decision which way you want to go. For me it was important with my young son, enjoying a sense of humour with him. I quickly tried to re-establish my sense of humour and have fun with him – it was reassuring for him.

Getting Lost in Reading

Q: You've learned how to read braille – do you use braille for work-related reading as well as for pleasure reading? Do you use the Library of Congress NLS digital talking book program, Bookshare (Benetech) or Learning Ally (previously Recording for the Blind & Dyslexic)?

A: I read braille but not effectively enough to read for pleasure. Initially I was set up with Victor Reader and used DAISY books in the first 6 months. I knew nothing about blindness and was eager to learn about blind people who were successful – I was busy reading everything I could get my hands:

  • "The Blind Doctor: The Jacob Bolotin Story" by Rosalind Perlman
  • "A sense of the World: How a blind man became history's greatest traveler" by Jason Roberts (about James Holman)
  • "Crashing Through: The Extraordinary True Story of the Man Who Dared to See" by Robert Kurson (about Mike May)
  • "Touch the Top of the World: a Blind man's Journey to Climb Farther than the Eye Can See: My Story" by Erik Weihenmayer
  • "Sight Unseen" by Georgina Kleege

My mom was a musician and a guy who was blind tuned her piano. That was my first experience with blindness. Then she worked with a blind senior musician. I wanted to read about successful people who are blind, to look for mentors, people who I could meet. I could get lost in reading and was reading a lot of books from Bookshare.

In Part 2 of Chris's story he tells us about how reading architectural diagrams tactually is different (and better). He shares his thoughts about how his life has become so much richer since he lost his sight. That's not to say that he hasn't had major challenges, such as dealing with the downturn in the US economy at about the same time he had the surgery that cost him his sight. Part 2 of Chris's story will be published with the March issue of the DAISY Planet. (The link will become active at that time.) Links to 'Additional Reading & Videos' will appear at the end of Part 2.

Photo Credits

The photograph of Chris Downey and Carlos Mourão Pereira and the photo of Chris and his son Renzo are courtesy of Rosa Downey.