"In the darkest moments of our lives, we often look towards the systems we believe are in place to protect and support us. Yet, sometimes, the reality is far from what we expect. This is a story not of despair, but of resilience, hope, and a call to action.
In 2014, my life and the lives of my family were irrevocably changed when I was diagnosed with Retinitis Pigmentosa (RP), a hereditary eye disease with no cure or treatment. The news was a devastating blow, casting a shadow over our future. With four children and a young family to support, the fear of what lay ahead was overwhelming.
Emerging from the doctor's office, the weight of being declared severely sight impaired (legally blind) was crushing. Yet, in the face of adversity, a flicker of hope persisted—the belief that we weren't alone in this struggle and that there must be systems in place to help us navigate this new reality. Unfortunately, this belief was quickly shattered.
The months that followed were a testament to the inadequacies of the support systems many of us trust to be there when we need them the most. We were plunged into a battle for the right level of support, a fight that cost us dearly—our means of employment, our home, and nearly our hope. The guilt, shame, and anxiety that ensued were profound, a reflection of a system that failed us when we were most vulnerable.
Now, a decade later, we stand in a better place, yet the struggle persists. This story is shared not for pity or sympathy, but as a stark reminder of the realities faced by countless individuals and families. It's a call to action for governments, not just in the UK but around the world, to implement the changes necessary to truly support those living with disabilities.
Let's shine a light on this important issue. Share this story, not just to spread awareness, but to foster change. Together, we can make a difference.
Visit [TheBlindPoet.net](http://theblindpoet.net) to learn more about our journey and how we're working to make a difference.
This narrative is crafted to highlight the challenges faced, the journey of resilience, and the ongoing need for systemic change. It aims to engage, inform, and inspire action, supporting a broader conversation about disability rights and support systems globally.