Rene Kirby, a man who lived life on his own terms despite being born with a severe form of spina bifida, died on July 11 at the University of Vermont Medical Center. He was 70.Kirby, known for his vibrant personality, iron will, and roles in films like Shallow Hal, passed away after two months of hospitalization due to infections and complications related to his esophagus, kidneys, and bladder, according to his brother, Jon Kirby.Born with more than a foot of his lower spine missing and a spine detached from his pelvis, Rene never developed legs that could bear weight. He couldn’t bend his knees and was, as his brother described, “L-shaped.” Yet Rene never saw himself as disabled.“Walking on my hands is just all I’ve ever known,” he once said. “I’ve never thought of myself as disabled.”A Life of Movement Without LegsRene walked on his hands, skied, canoed, remodeled houses, and won state-level gymnastics competitions in high school. He navigated Burlington on a three-wheeled, hand-cranked bike built for him when he was 10. That bike served him for the rest of his life.His mother rejected conventional medical approaches, such as braces or leg-stretching instruments, instead fostering independence from infancy. At nine months old, she placed his bottle just out of reach so he would learn to crawl using his arms. By age one, he was walking on his hands.In a 2008 Stuck in Vermont interview, he famously said he couldn’t stand self-pity. “Life’s too short to be doing that,” he remarked. He proudly called himself “a gimp without a wimp.”Hollywood Came CallingKirby’s charm caught the attention of Hollywood director Peter Farrelly in 1999 during a chance meeting at a Burlington bar. Farrelly, in town filming Me, Myself & Irene, was instantly taken by Kirby’s humor and charisma. He later wrote a part specifically for him in Shallow Hal (2001), a film about seeing beyond physical appearances.Kirby danced with Gwyneth Paltrow on crutches and shared scenes with Jack Black and Jason Alexander. “He epitomizes inner beauty,” Farrelly said at the time. Kirby also had a small role in the 2003 movie Stuck on You and appeared in an episode of HBO’s Carnivàle.Despite his Hollywood stint, he remained grounded in Vermont. He worked at IBM for 20 years and enjoyed stock trading in recent years. He and his brother remodeled homes together, laying tile, installing insulation, and handling carpentry.Living with Spina BifidaKirby was born with a severe form of spina bifida, a congenital condition where the spinal column fails to close completely during early pregnancy. In his case, it caused major deformities: undeveloped legs, a spine detached from the pelvis, and significant nerve damage.Spina bifida is one of several neural tube defects and ranges in severity. Some people experience minimal symptoms, while others, like Kirby, face profound physical challenges. It often leads to complications with the bladder, kidneys, and other organs—as seen in the final months of Kirby’s life.According to the National Institute of Neurological Disorders and Stroke, people with spina bifida often live long lives, but with a wide range of medical needs and physical limitations. There is no cure, but with proper care and a strong support system, many lead fulfilling lives.Kirby exemplified this possibility, surpassing what medical textbooks might have predicted for someone with his condition. He even beat throat cancer, though he lost his voice in the process.What Kept him going? His motto, “You don’t have to stand up to stand out,” echoed the spirit he brought to every challenge.What Causes Spina Bifida?The exact cause of spina bifida remains unknown, but researchers believe it's the result of a combination of genetic, nutritional, and environmental factors. One of the most well-known risk factors is a deficiency in folic acid (vitamin B9) during early pregnancy. This is why doctors advise women who are pregnant or planning to conceive to take folic acid supplements. Other risk factors include poorly controlled diabetes in the mother, the use of certain anti-seizure medications, and a family history of neural tube defects.Different Types of Spina BifidaThere are four main types of spina bifida, ranging from mild to severe:Spina Bifida Occulta: The mildest and most common form, often called "hidden" spina bifida. It usually causes no symptoms and may go unnoticed.Closed Neural Tube Defects: These involve abnormalities of the spinal cord’s fat, bone, or membranes and can result in few or no symptoms, but sometimes lead to muscle weakness or bladder issues.Meningocele: In this form, a sac of fluid protrudes through an opening in the baby’s back, but it does not contain the spinal cord. Surgical treatment is often successful.Myelomeningocele: The most severe form, where the spinal cord and nerves develop outside the baby’s body and are contained in a sac. It typically causes paralysis and other serious disabilities.