Summary
“Tough times don't last, tough people do.” – Robert H Schuller
Inaccessibility causes multi-pronged issues affecting every aspect of life for Persons with Disabilities (PwD). It often cripples a person way more than their disabling condition does. From mental health to social life, to quality of life and cost of living, there’s no single aspect of life that remains unaffected by the inaccessibility of infrastructure.
Anubha Singhal from New Delhi was diagnosed with muscular dystrophy and understands the challenges of inaccessibility. Being an architect, she is passionate about the same.
In her blog post, she describes the uplifting story of Kavya who has Idiopathic Intracranial Hypertension (IIH) and who is always looking to be part of the solution.
by Anubha Singhal
Breaking Barriers – The Uplifting Journey of Kavya Poornima Balajepalli
Meet Kavya Poornima Balajepalli, a 27-year-old young woman with a bright smile, filled with a passion for art and a love for life’s little joys like gazing at stars, observing skylines, smelling Petrichor, or driving vehicles. Trained in Bharatanatyam, she is an art enthusiast, involved in sketching, painting, tactile art, craftwork, singing, and playing kalimba. But her journey has been marred by invisible battles and societal barriers due to her complicated disability. She lives in Vizag – the city of destiny while originally hails from Srikakulam in Andhra Pradesh.
Kavya’s life took an unexpected turn during her final year of Architecture studies when she was diagnosed with Idiopathic Intracranial Hypertension (IIH), a rare invisible neurological disorder. Multiple major surgeries followed, including spinal and brain shunts, and her dreams seemed to slip away. She faces limitations with movement due to her brain shunt, which is risky even with a small jerk and may cause another surgery.
Her condition resulted in blindness and mobility constraints, making her dependent on a caregiver when outside her home, and her cane is used only to bring visibility to her disability. Yet, she found strength in acceptance, and after a period of mindful solitude, she completed her education in Architecture. Even re-starting her formal education in architecture was tough for her due to web inaccessibility and lack of guidance regarding rehabilitation training to navigate through a new phase of life.
This phase provided Kavya time to reflect upon various dimensions of inaccessibility around her that consequently increased the cost of living because, be it in public infrastructure, transport, education, healthcare, digital avenues, etc. As a user, she experienced first-hand the challenges faced by people with disabilities and others which convinced her to work as an architect to advocate for universal accessibility.
Despite a period of uncertainty and never-ending ordeal, Kavya showed resilience and became an advocate for inclusion. As an NCPEDP-Javed Abidi Fellow on Disability, she is working on addressing gaps in the Architecture Curriculum to create inclusive spaces with the vision of “Design to empower everyone to experience everything”. She conducted studies on the accessibility quotient of Blue Flag Beaches. Her determination caught the attention of the district administration of Visakhapatnam, who inducted her into the district-level committee on disability.
She also curates her online initiative, Poornamidam, an endeavour to take cognizance of issues concerning Disability, Universal Accessibility, Gender equality, and Inclusive Architecture, raise awareness through data-driven and evidence-based research and advocacy towards Inclusion. She further runs an online IIH support group – IIH Warriors India.
For Kavya, her health condition has been a blessing in disguise, providing her with a unique perspective and the strength to keep moving forward.
She dreams of a purposeful life and urges others to embrace opportunities with an attitude of openness and positivity. Her story is a lesson about never giving up and accepting whatever life has to offer.
To more about the social changemaker with disabilities visit www.kanthari.org
