How to Not Only Accept the Devastation of Blindness, or Any Rare Disease, but Change the Perception of It and Fight for a Cure with Kristin Smedley

Kristin Smedley is seeing through the darkness and changing perceptions of blindness.

Kristin Smedley interviewed on The Second Phase Podcast to share her journey raising two sons who are blind, becoming an author and speaker and starting a non-profit.  On the graphic is robyn sitting on a white rug with a cup of coffee and to the right is the logo for the podcast and at the bottom is Kristin wearing a navy dress with her left hand on her hip laughing.

About Kristin

When Kristin Smedley’s two sons were born blind, she had to give up her dream career teaching 3rd grade and figure out how to survive an unknown world.

After figuring out how to raise her own unsighted children, Kristin dedicated her life to making sure no other mom has to sit isolated in devastation over a rare eye disease diagnosis.  She is on a mission to change the perception of what it means to be blind.

In 2011 Kristin launched a non-profit to fund research for children living with the rare eye disease her sons have, CRB1 LCA/RP. CRB1.org is not only providing support for parents of blind children but raising awareness and funds for rare eye disease research.

She has done a TEDx talk in New York City to change perceptions of blindness and recently published her first book in 2019; Thriving Blind: Stories of Real People Surviving without Sight.

Kristin is a popular keynote speaker with her message “I’ll Teach You to See: Set Extraordinary Expectations”.

First Phase

During her first phase Kristin was a 3rd grade teacher.   She had it all.  The husband, the big house, a great job!  And then came the baby!   Life was perfect until it wasn’t.

Second Phase

Kristin’s first child was born blind.   At the time, there were limited resources available for parents with non-sighted children.  The perception of blindness was so negative.  Kristin lost hope in the future for her son.

Then along came her second son.  Also, blind.  A double whammy to some, but extraordinary blessings to Kristin, especially once she accepted their blindness.

About Blindness

Blindness is the second most feared thing next to death.   Just one reason for Kristin to be a champion in the blind community.  Twenty million people in the US are blind.  The unemployment rate for people who are blind is 70%.   More fuel for Kristin’s fire of desire to change the perceptions of blindness.

The Perfect World

If everyone had a good perception of blindness and blind people were treated with the same respect and given the same opportunities as sighted people, there would be no need to fight for a cure.  Kristin’s mission to change the perception of blindness is fueled by the lack of expectations, the misunderstandings and the lack of opportunities offered to the blind vs. sighted communities.  If perceptions were great, research wouldn’t be necessary.  If parents of blind children just sit on the couch and cry, and don’t advocate, the unemployment rate and the perceptions will never change.

Lessons Learned

You are given experiences so that you can learn from them and then help others who are experiencing what you went through, or something similar.

It’s important not to put your dreams on your children. Get them what they need and follow their lead.  Let them go after their own dreams, not yours for them.

Get to know the things that you fear the most because it is the things that you fear that are often the most powerful.

Surrender the control and move forward because everything is “figureoutable”.

Don’t try to do it by yourself!

Book Recommendation

Touch the Top of the World: A Blind Man’s Journey to Climb Farther than the Eye can See: My Story by Eric Weihenmayer

Favorite Quote

Our chief want is someone who will inspire us to be what we know we could be.  – Ralph Waldo Emerson

Learn more about and connect with Kristin

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Twitter

Learn more about me, your host, Robyn Graham, click HERE.

To learn about The Brand Insider by Robyn Graham, click HERE.

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