Thriving Blind by TEDx speaker and mother of two children with sight loss, Kristin Smedley. Kristin is changing the way the world sees blindness.
When both of Smedley’s sons were born with a rare disease that caused them to lose their sight, she and her family chose thriving over merely surviving.
Title: Thriving Blind: Stories of Real People Suceeding Without Sight
Author: Kristin Smedley
Genre: Nonfiction/ Essay Anthology/ Memoir
Length: 125 pages
Release Date: February 27, 2019
Thriving Blind by Kristin Smedley (Synopsis from the Back Cover)
Reality TV star, YouTube Sensation, Teacher of the Year.
Have you ever dreamed of having one of these titles next to your name? Maybe you dream of climbing Mt. Everest or becoming a successful CEO of a national organization. Now, would you consider any of this you were… blind?
Kristin Smedley’s two sons were diagnosed as blind when they were each just four months old. Having no experience with blindness, Kristin expected a life of challenge for her boys. However, eventually she met a few people that would change her perception of what is possible for those navigating the world without sight.
Kristin decided to set extraordinary expectations for her sons, equipping them with tools and resources to navigate their world. Soon, tears became cheers as Kristin celebrated her boys’ successes in school, baseball championships, and theater productions. Recently, Kristin delivered her oldest son who is blind to college a thousand miles from home.
Kristin’s boys, like the people in this book, aren’t just surviving blindness. They are thriving.
Thriving Blind by TEDx speaker and disability awareness activist, Kristin Smedley, is a powerful little book that packs a huge punch. In this book there are twelve amazing stories from twelve people who are doing great things and also happen to be blind or visually imapired, Throughout the book, Smedley emphasizes the fact that people with disabilities can do anything anyone else can do- we just do it a little differently.
This book includes testimonies from people who are blind and also CEO’s, marathon runners, musicians, parents, and so much more! I was particularly drawn to the story of Scott Mac Intyre, the 2009 American Idol contestant who is blind. I am also a visually impaired musician and Scott’s heartfelt story struck a chord within my heart.
Throughout the entire book, Kristin is frank about her own personal struggle with the impact that sight loss has had on her family. Her words are raw and poignant; however, they are also full of hope. Her story reminded me of how my own mother fought for me to have equal access to education and opportunities when I was a child. I am certain that Kristin’s words will offer parents with children who have visually impairments a great deal of hope and comfort.
The only reservation that I have about this book is a small note of constructive criticism: There are many times throughout the book that Kristin does not use “person first” language. For example, she frequently refers to her blind sons as opposed to her sons who are blind. I was not offended by this construction because I often speak about myself as a “disabled woman,” or a “visually impaired Filipino-American.” My disability is an important part of my identity and I am comfortable using “identity first,” language rather than “person first” language; however, there are many people who prefer person first language.
I strongly recommend Thriving Blind for anyone who has ever looked at a person with a disability and thought, “How do they do that?” Smedley’s book is an important reminder that people with disabilities can live full and happy lives.
This book would be particularly helpful for parents who are trying to find ways to support children with sight loss. Kristin uses anecdotes from her own life and her family’s life in order to encourage parents and help them to support and empower their children.
If you or someone you love is impacted by disability or sight loss, I strongly recommend that you take some time to read this powerful little book!
About Kristin Smedley
(From Kristin’s Amazon Author Page)
As Kristin found and equipped her boys with the resources to help them thrive, they not only took on the world, but changed Kristin’s perception of blindness.
In 2011, Kristin launched a mission to fund research and resources for children living with the rare eye disease her sons have. In less than eight years, the Curing Retinal Blindness Foundation has raised over a million dollars and achieved the first legislation in US history to be submitted in Braille–legislation that advocates for better resources for blind and visually impaired Americans.
In 2016, Kristin’s blog about changing people’s perceptions of blindness went worldwide and was followed by her 2017 TEDx Talk on setting extraordinary expectations. She partnered with Comcast media to spread awareness of the inclusive X1 product. Kristin was one of twelve people in the world invited to testify before the US Food and Drug Administration to advocate for the approval of the first-ever gene therapy to reverse blindness. Kristin is currently the Pennsylvania Ambassador for the National Organization of Rare Disorders (NORD).
Kristin, Michael, Mitchell, and Karissa now mentor families living with blindness, and Kristin’s public speaking engagements, book, and social media outreach teach others to move past their fears and obstacles to achieve extraordinary outcomes. You, too, can set extraordinary expectations and achieve your dreams.
One of the most exciting things about becoming a blogger is that my website has given me the chance to get interview and learn about exciting people from all over the world who are doing amazing things. As a person who is visually impaired, I am grateful for Kristin’s work to help to remove the stigma that is placed on blindness.
I was so happy that Kristin agreed to chat with me about her new book, Thriving Blind, her experiences as a TEDx speaker, and her work in leading a nonprofit organization.
Rev. Rebecca: I absolutely loved your book, Thriving Blind. I think it was brilliant for you to interview people who are blind or visually impaired about how they found success and happiness and life. I can tell from your vivid writing that you enjoyed working with all of the contributors- but is there one story that sticks out in your mind? Is there one particular story that holds a special place in your heart or a particular resonance for you and your family?
Kristin Smedley: Oh gosh – you’re right… I enjoyed working with every single contributor! They each had such great insight. I learned so much about raising blind children from them all, but I also learned about life and resilience as well. I think that at the time I was writing the book, Lonnie’s story was the one I went back to often. I had a few things happen in my life over the past two years that were leaving me feeling upset and overwhelmed. Writing and re-writing Lonnie’s chapter actually helped me let go of the anger and give myself permission to take a break here and there. Lonnie is a single Dad raising three girls alone, and he went blind due to an accident with a friend; yet there is not one hint of bitterness or anger in his story. Pretty incredible for sure.
Rev. Rebecca: I’m interested in the logistics of how this book came together. How did you find all of these wonderful people to interview? Did you get the chance to meet them all in person? Was there a great deal of travel involved?
Kristin Smedley: I’m very blessed that I met many of the contributors of Thriving Blind through an annual awards event held in my hometown. The Associated Services for the Blind of Philadelphia hosts the Louis Braille Awards to honor extraordinary role models for the blind community. I have taken my boys to that event since early elementary school so that they would have role models to look up to.
My vast network came in handy for connecting to others. Diane is a friend of a friend and she actually connected me to Simon. As I mention in the book, I met Kay and Patrick nearly nineteen years ago at my first conference for our rare eye disease. Maureen was referred to me by one of the stellar members of my boys’ Individualized Education Plan teams and Michael’s family knew mine from Blind Sports of Philadelphia. All of my chatting with people for so many years really paid off!
I have to say that Scott was my biggest challenge – in my mind anyway. He is so popular due to American Idol, his successful book and singing career that getting connected to him seemed like quite the longshot. However, within a few months his team connected us and within a very short time his story was added to this fantastic project!
I actually didn’t have to travel to meet any of these extraordinary folks. We did all of the communication via email, phone and Skype. Now my goal is to travel to all of their hometowns to do a book signing with each of them! I am so interested to get to meet their families and communities!
Rev. Rebecca: What was your favorite part of writing this book? What was the most challenging aspect of bringing this collection together?
Krsitin: My favorite part was also my biggest fear – the interviews. I had never done anything like this before, so I was incredibly nervous to get all the information in one take. As you can imagine with all of the jobs these folks have, they are extremely busy. I had one shot to get each person on the phone for 20-30 minutes and get everything I needed to make this book the resource I wanted it to be. I had to have my act together big time! But with each conversation I fell more and more in love with the project, and my fears disappeared. As I’m sure you realized in reading the book, each person was so easy to talk with and so incredibly different from one another! It made for the most interesting conversations!
The most challenging part for me was to convey each person’s journey in their own style yet make the book cohesive for the reader. In addition, I wanted it to be light and full of optimism since my number one target reader is a parent that just received a blindness diagnosis for their child. Initially, I summarized the interviews and basically told their story for them. But their personalities and uniqueness got lost. I was in a mastermind group at the time (which has now become a podcast I co-host) and through a deep brainstorming session we came up with the idea to tell share each person’s story within the framework of (1) What their condition is, (2) How they went blind, (3) What their job is, (4) Advice and skills, and (5) Their ideas around the bright side of blindness. I tied it all together by giving the short introduction of how each of them have impacted my life. I think it worked beautifully!
Rev. Rebecca: Can you tell me a little bit more about the Thriving Blind community?
Kristin: Oh my goodness our Thriving Blind community on Facebook is such a tremendous group! Initially I set up the page to simply share my family’s journey with blindness to be a resource for other Moms like me that needed real life examples of what blind kids do. It has now become a thriving hub of inspiration and information where people affected by blindness chime in on posts about aspects of the journey. In addition, and perhaps my favorite part, is that there are also a ton of people that are not impacted by blindness that engage with our page to educate themselves about blindness. So many perceptions of blindness are changing! For example, I shared a post a couple of weeks ago that was from Perkins School for the Blind and was titled “Blind Etiquette: 6 Ways to Be Gracious Around People with Visual impairments.” That post on the Thriving Blind page reached over 10,000 people, and had 186 shares. I got calls, emails and in person comments from so many people about how great the information was.
Also, my younger blind son, Mitchell, recently launched a weekly Facebook live show called “Tech Tuesday” on the Thriving Blind page. He shows different technology he uses to do all the things he does. The half hour shows are full of engagement as viewers ask questions and have a bit of a dialogue with Mitchell. I constantly get messages from Moms of blind children thanking us for the show as it is so encouraging for them and their children! Mitchell has an incredible gift for being quite charming on video and he is as entertaining as he is informative.
The engagement in the Thriving Blind community is proof that people are so in need of information regarding how to move from surviving to thriving when given a blindness diagnosis. I am honored that my family and I can be such an entertaining resource!
Rev. Rebecca: I also see that you are the head of a nonprofit organization. Could you share a little bit about that?
Krsitin: I initially started the Curing Retinal Blindness Foundation to fund research for a cure for the blindness my boys have, CRB1-LCA/RP. As more and more parents were calling and expressed that they had no idea how to help their children and wanted to simply “hang in there” until a cure, my team and I realized we needed to be the bridge from diagnosis to potential treatments. The CRBF funds vision research and connects families to resources for living with blindness. The cover of Thriving Blind is actually an awareness tool for CRBF!
Rev. Rebecca: I am so impressed with your TEDx talk. You did an amazing job! Can you share a little bit about that experience? What was it like to give a TEDx talk? How did come to take part in a TEDx program? Do you have any tips for people who dream of giving a TED talk of their own someday?
Kristin: Thank you! The TEDx talk is on of my proudest accomplishments! In 2016 I set a goal to do a TEDx talk in eighteen months. I ended up on the TEDx stage about five months after setting that goal! I wrote and rehearsed it with an incredible coach, Tricia Brouk, in New York City. Writing that talk was one of the hardest things I have ever done. At that time, not only was my life upside down after my husband of nineteen years walked out, creating the talk forced me to re-live some hard moments surrounding the diagnosis days and picking myself up. Tricia was an incredible coach that helped me create and deliver an empowering talk that would inspire people to change their perception of blindness.
If you want to make an impact in your field or inspire change in the world, the TED stage is a top spot to do that. When you decide to do it, contact a coach (I highly recommend Tricia!) and get going on it! One piece of advice: watch the best TED talks for inspiration and information regarding what makes a good talk. However, tell your story in your style and from YOUR point of view. That is the key to creating something that is empowering.
Rev. Rebecca: Finally, what’s next for you? Do you have any other projects in the works? What are you most excited about right now?
Kristin: I have to admit I have been bit by the writing bug! Watching the impact this book is making on people’s lives is incredible. I am now coordinating Thriving Blind, Junior because I can already see a gap in my work. Thriving Blind inspires people to change their perception of blindness. It’s a game hanger for sure, but for a newly diagnosed family of a bind child, it’s only a first step. Now, I need to deliver an action plan of sorts that addresses what education and extracurricular activities look like for blind children; essentially, how you move from inspiration to extraordinary outcome.
In addition I have a mission for 2019 to be on 100 stages – physical stages, podcasts, and interviews like this one – to get the word out that the bridge from diagnosis to extraordinary outcome is a team effort. Ophthalmologists, retina specialists, educators, employers – everyone involved in a blind person’s journey can impact that journey in simple, positive ways.
Kristin’s TEDx Talk About Empowering Her Two Sons Who Are Blind
Follow Kristin Smedley!
If you enjoyed Thriving Blind, then I’m certain that you would also enjoy my interview with the world’s first adaptive snowboarder, Danielle Coulter.
You should also check out my chat with the amazing bestselling author, Win Kelly Charles, who also happens to have cerebral palsy.
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10 thoughts on “Thriving Blind: Changing the Way People See Disability Book Review & Interview with TEDx Speaker Kristin Smedley”
Person-first language is largely outdated as being a best practice. Many people prefer identity-first language. What offends me more is that she says she is a “rare disease mom” She does not have a rare disease, it is not her identity. Also, and this is nothing against her personally, I am getting a bit tired of parents and others speaking and writing about disability when there is still such a problem with the lack of opportunity for actual people with disabilities to get heard.
Thanks for your thoughts. I agree that language can be tricky; however, before writing this article, I did some research and found that “person first language,” is still being used and taught in the communication departments of many universities.
I personally prefer “identity first language,” for myself but I know other people have other preferences.
I agree that there need to be more diverse voices and more diverse authors, but I support the work that Kristin is doing in order to raise awareness and help to fund research for rare diseases.
Thanks for reading!