Over the last five, if not ten years, I’ve constantly heard the same basic encouraging prompt from all my closest friends: “Brooke, when are you gonna finish your memoir? People need to hear your story!” While I’ve agreed with all of them (because you know, it doesn’t build people’s confidence in my ability to help them share their stories, if I haven’t gone through the whole process myself), I wanted to wait until I had a clear message and purpose for the book. It’s true that at all of my speaking engagements, workshops, and presentations, I always share pieces of my story to illustrate that God has a purpose for all our limitations and challenges, but the book would have to go deeper than that.
So now, finally, five years after my first attempt, I’m digging deep and getting done. It really took prayer and little perspective after surviving four years of medical crises to understand why I need to write my story. Rolling in Grace is about finding God’s Grace in the midsts of my pain and discovering His specific purpose for my disability. As I’m currently writing the heavier chapters of my story, I’ve been going to YouTube to get some inspiration and motivation from the influencers that give me hope. I’m enamored with Shane Burcaw and Hannah Alyward, an interabled couple AKA Squrimy and Grubs, Joni and Friends, and the inspirational documentary work of Justin Baldoni. But, watching their videos has made me ponder the power of being seen and heard compared to having your words read. Although I have a YouTube channel with 24 encouraging and informative videos (I hope, anyway), I only have 18 subscribers because I haven’t put a whole lot of energy into promoting it. However, I do think it would kind of cool to gain a big following and be able to encourage a lot more people, especially since I can’t really go out and do regular speaking engagements right now.
But here’s the thing, there’s one big difference between the YouTubers who inspire me and myself… I have pretty severe speech impairment. That means I have three options when posting vlogs: 1. Speak in my natural voice and caption every video 2. Have someone clarify what I’m saying, like my best friend Jonathan did in the interview below 3. Just use the augmentative communication (AAC) apps on my phone or iPad. I haven’t learned how to correctly caption videos yet, so option 1 is out. Since Jonathan moved to Tennessee just weeks after the interview took place, and I don’t have another friend who can help clarify my speech for videos on a regular basis, option 2 is pretty much out too. So, that just leaves my AAC apps.
Now, let me make it clear that I’m extremely grateful for the AAC technology I have at my fingertips, especially for live presentations and in social situations to fill in misunderstood words or phrases. But, I know listening to “Heather’s” (the name of the voice that best suits me in the app) voice can get a little grating and tedious at times, especially over long periods. Therefore, I wonder who would actually want to stick with a vlog where Heather speaks for me. A few weeks ago, I posted a “Saturday Coffee and Encouragement Invitation” video, in which I asked viewers to send me their questions and I would respond in a video the following Saturday. It was meant to be an introduction to my story, but I’ve yet to receive any questions. What does that mean?
While writing this blog, I did a quick “AAC” search on YouTube. I found lots of posts by speech pathologists, technology companies, and news outlets, but there was only one video of an individual AAC user sharing his personal experiences. He, like me, was an experienced public speaker, but only had one YouTube subscriber. It’s an interesting situation to note. One that leaves me pondering whether or not I should try to become a trailblazer again for the umpteenth time in my life. I’d love to hear your thoughts on these things.
I’ve always said God gave me the gift of writing so people could “see and hear” me without the barriers of my wheelchair and speech impairment. But, by the same token, He’s also taught me that my weaknesses can also help accomplish His purposes. Therefore, my voice, natural or synthesized, also has power.
People who know me well are aware that my speech has always been my biggest bone of contention with having cerebral palsy. I often joke, “if God was going to stick me in this chair and give me all these obstacles to overcome, couldn’t He just let me speak clearly?” It should also be noted that not all people who have CP have a severe speech impairment. For some, it’s very slight and for others it’s nonexistent.
That being said, I was invited to this interview with ANCOR during the 2019 TASH Conference, for their “Be Seen” video project. I only ever intended to post a few edited clips from it, since I was coughing really badly (chronic allergies) that day and my speech was even more unintelligible than normal. However, a friend is still editing those clips for me and in light of sharing my story, along with all my contemplating “being seen,” I think it’s important to show you the full picture.
After you watch it, please feel free to send me your questions, feedback on YouTube, or anything else. If you’d like to support the publishing of my memoir (mentioned above), you can make a pledge on my Kickstarter until November 15th. I pray it will be a blessing to you!
In fact, some parts of the body that seem weakest and least important are actually the most necessary. And the parts we regard as less honorable are those we clothe with the greatest care. So we carefully protect those parts that should not be seen, while the more honorable parts do not require this special care. So God has put the body together such that extra honor and care are given to those parts that have less dignity. This makes for harmony among the members, so that all the members care for each other. If one part suffers, all the parts suffer with it, and if one part is honored, all the parts are glad.
-1 Corinthians 12:22-26 NLT