STRENGTH-TESTED: The author enjoys an evening beside the firepit at her home with her dog, Kloey

In the midst of the excitement and cheers of our kids, I took a moment to step away to talk to one of our friends with her ninemonth-old baby. He had been diagnosed with Spinal Muscular Atrophy or SMA at only a couple months of age, and had made tremendous progress since receiving treatment. I commented on how well he was doing at holding his head up, which was something he was unable to do a few months ago. When last I saw him, it was nearly impossible for him to lift his head. His dutiful and caring mother would intervene to help him lift his head back to an upright position. This time, he worked even harder to be successful. It was exciting to see his progress. Even more so, it was exciting to watch his mom let him do it. She told me when we had been together the last time, she realized that she had to let him struggle, so that he could grow. 

The ability to struggle and even fail is invaluable for a child’s development and ultimate success in adult life. However, for families of children with disabilities, failing is often a right that families struggle to permit. I was born with an extremely rare disability called Congenital Myasthenic Syndrome, where my nerves and muscles do not communicate properly, causing extreme weakness. As a result, I use a power wheelchair, ventilator, and have 24hour care. With the amount of care surrounding me, I could have practically lived my entire childhood without ever failing, but I’m so grateful I was allowed to. 

Childhood and adolescence are tough, and when a disability is added to the equation, life becomes exponentially more difficult. I have found that adulthood can also be tough. Now there are less supports and more negative implications when I do fail. I am so grateful for the countless times that my parents let me find my own limits, make bad choices, and ultimately, pay for them. When I made poor decisions as a

child, there were always people there to help me get straightened out and on the right path. I had the right to fail, safely. Those safety nets are not as readily available as a business owner, foster mom, wife, and homeowner. Even though those nets are not as frequently available as they once were, I have a lifetime of experience and wisdom that I have gathered from struggling and failing, which has allowed me to be where I am today. 

I am so grateful for the countless times that my parents let me find my own limits, make bad choices, and ultimately, pay for them.

In spite of my countless experiences with struggling and failure, I still fail regularly. However, I have learned that: failing at one thing does not mean that I am a failure, and the risk of failure does not outweigh the benefit of trying. • 

ABOUT THE AUTHOR:

Dr. Josie Badger received her Bachelor's degree from Geneva College in Disability Law and Advocacy, a Master's from the University of Pittsburgh in Rehabilitation Counseling, and a Doctorate from Duquesne University in Healthcare Ethics. In 2012, Dr. Badger was crowned Ms. Wheelchair America. In 2014 Josie founded J Badger Consulting Inc. where she provides youth development and disability consulting services. She is the National Transition Director for SPAN Parent Advocacy Network, working with RAISE and the National Healthcare Transition Center for Youth with ID/DD. She is the Campaign Manager of the United Way of Southwestern PA's #IWantToWork Campaign, to improve the employment of people with disabilities, is the lead Field Organizer for the Family Care Act that supports paid family leave, and is the developer of TRAIL, a statewide advocacy and lobbying training program. She serves as the Secretary of FISA and co-chair of the Grants Committee. Josie recently founded PEACOCK a nonprofit that will further support the needs of the disability community and diversity, equity, inclusion, and access. With this new initiative, she hopes to be able to support the work of a new commission on men's mental health.