Disabled But Not Unable
Nature does her part, but Nurture wins.
Nature and nurture have been battling over my sister’s body since November 12, 1998. It has shaped, and will continue to shape her identity.
On a macro level, the debate revolves around the unanswered question of what factors are more significant in determining behavior and development; nature or nurture.
On a micro level, there is my sister Julia LiPuma
Nature dictated that she was born ten weeks prematurely, which caused her brain to bleed. With this type of brain injury, she was at high risk for impaired movement, speech, cognitive and or sensory problems. Soon after her birth it became apparent that her gross motor skills were impaired, which later led to a cerebral palsy diagnosis.
On the Gross Motor Classification System, Julia is considered a “Level 3.” A Level 3 states that children walk using a hand-held mobility device in most indoor settings and a powered mobility device when in the greater community.
Here’s where nature reared its head again, because a person’s classification level doesn’t change — not with any amount of therapy or intervention or hard work. “One’s GMCS,” nature says, “Is what it is, so take that!”
Nature decided she would have tight, stiff leg muscles, abnormal postures, hip subluxation and the constant risk of contractures, which is a hardening of muscle tissue.
But wait,” Nurture interrupts. “Although the GMCS scale is an indicator of maximum motor potential, a person can reach their potential (or not) based on their behavior and how hard she works for it.” Using nurture, people with cerebral palsy can affect their ultimate potential.
Sadly, I have seen people with Julia’s exact classification be limited to wheelchairs because they were not as fortunate as her in terms of nurture.
In the early years, it was my mother who starred in the lead role as nurturer. She researched therapies and treatments to help improve the quality of Julia’s life. All of the data showed that intensive and early therapy is critical for maximizing the opportunity for the young brain to adapt and learn. And so, Julia’s rigorous regimen began with preventative work when she was 10 weeks old and continues to this day. This included intense physical therapy, occupational therapy, corrective surgeries and assistive equipment.
Through the years, my mother continued nurturing while helping Julia understand her body and her challenges. With my mother’s relentless support and encouragement, Julia learned the values of courage and perseverance. In later years Julia took on the fight, too, with daily stretching and self-advocacy. She is lucky to have a supportive family who had the means to provide her with an abundance of nurturing. From birth, the ethos in our family has always been about enabling Julia to reach her maximum potential through early and constant interventions.
Although nature is always with her, and with all of us, it is nurture that has brought Julia to where she is. I have lived with her through the surgeries, the scars and the metal bars on both her legs.
But Julia is just my big sister.
My sister and I are always together, as we always were, and as we always will be.
I chose to tell my sister’s story to show that Julia’s life is not defined by her disability. A person with a disability experiences many barriers. Instead of dwelling on her limitations, Julia takes advantage of what she can do. She remains positive through it all and continues to enjoy life. What I’ve learned from my sister is to find the positives within the negatives.
