From Comfort to Chaos: Navigating Resilience and Inclusiveness Through an Unexpected Diagnosis
Anubha Singhal grew up in Delhi, India. She loves to travel. She always lived a comfortable life, until age 17, when she was diagnosed with a rare condition, limb-girdle muscular dystrophy. Despite the challenges, she embraced the new obstacles and her entire outlook on life changed. Her career as an architect also shifted, as now she brings the power of design to change the lives of many people with disabilities, promoting and building resilience and inclusiveness through her organisation “Enable Me Access”.
Battling Obstacles: Finding Purpose in Progression
Imagine, you have an urgent need to urinate, and the only toilet is 3 km away. You scramble in desperation to make it there, only to find you cannot enter the toilet.
Accessibility is a necessity, and we all must take responsibility for it. We all play different roles in the development of our nation and need to take ownership of what we do for our immediate and future generations. We at Enable Me Access work towards our mission to sensitize, inform, and facilitate the change for Accessible environments through advocating and building capacities in Universal Design, and fostering an environment that benefits all, including individuals with disabilities.
Embracing Change: From Shock to Resilience and Inclusiveness
October 2012 marked my first sudden fall. Walking through a market street, a small obstacle made my knee buckle. Down on the ground, I panicked. I was perplexed. Why is this happening? I fell many times before I knew how to react. That’s how my story began, and it continues still, opening my mind and horizons to a different life.
“You are obese, reduce your weight.” Said my parents when I used to struggle to climb stairs. I was called “Nazuk Kali” (fragile girl) by my school friends. “This is happening to you because of your karma.” Many such comments made me even question myself as I was clueless about why my body reacted that way.
The Power of Purpose : Architecture as Advocacy
I was born in the capital city of Delhi in 1996. It was the era when social media didn’t exist, and we used to play in the community streets and parks. I was always excited about vacations as we escaped the summer heat, going to beautiful mountain ranges in the North of India with family and friends.
Every teenager enjoys playing sports, going out with friends, and travelling without worrying but my freedom was limited when I couldn’t use my muscles as a normal individual anymore. When my family and I received the diagnosis in 2013, the shock was huge.
I loved nature, mountains, and going on treks, but I could no longer be a part of the exploration with my cousins. I faced difficulties with activities that looked pretty easy, like standing up from the floor or climbing stairs. Sudden falls due to uneven surfaces became a part of my life. I was laughed at or looked at with eyes of doubt and my family got concerned.
Family Bonds: Facing Diagnosis
After receiving my final diagnosis, my caring father took me to many doctors to understand more about my condition. For more than 2 years, while just starting my graduation in Architecture, I underwent regular investigations, several blood tests, and scary biopsies, until in 2015, I was finally diagnosed with a rare condition called Limb-girdle muscular dystrophy, which meant progressive muscle weakness in upper and lower limbs. This was a turning point in my life, and I first thought of quitting architecture because of the progressive nature of this disease.
Creating Access: Transforming Challenges into Opportunities.
The course was intensive! As my movements slowed down, due to lower limb weakness, it made me more thoughtful and prepared for regular tasks to cope with time. I accepted my condition quickly and took it as a challenge though I was still exploring its consequences. Yet, my family members’ acceptance of my condition took a lot longer.
A Call to Action: Building an Inclusive Future
Then my life changed entirely, I could transfer from living a comfortable life to multiple challenges and overcoming them. It was my brother who had suggested I should study architecture, and this turned out to be a great match. Architecture and my condition together gave me a huge purpose.
Insightful Encounters: Connecting with Others Like Me
Meeting others with similar conditions was an eye-opener for me. I saw them using wheelchairs and assistive aids to walk. Before, I couldn’t imagine the transition from being an active person to becoming dependent. But over time I prepared for my future. I found no self-help/advocacy groups for the muscular dystrophy community, and this gave me the idea to start an organization in 2019.
Brother affected too
And then, in January 2020, my younger brother also got diagnosed with the same condition. This again was a very challenging time, as my parents were reluctant to get him diagnosed. And for me, it was tough to accept that he now had to go through all I had been struggling with. However, this also showed me the urge to take further action. As an architect, I had the chance to work on removing barriers and creating accessible places for people with disabilities. Finding opportunities in the field was quite challenging, hence it made me create them myself.
The Progressive Path: Facing Challenges Head-On
As the disease is progressive, I will continue to experience different challenges. My journey shows how life can change from being independent to living with challenges due to inaccessible environments. At some point in our lives, with age or other factors, we all will face situations in which spaces become inaccessible. This rings the alarm for each one of us to be considerate of building a future that is inclusive and accessible for all.
Learn more about her work at https://www.enableme-access.com/
and do you, like Anubha want to start an impact making organisation to address a social and/or environmental issue, then the kanthari impact leadership course could be for you. Learn more about the course and apply at: www.kanthari.org
