Overcoming Institutionalization: A Journey to Independence
When I was fifteen years old, I was forced into Monroe Community Hospital, a nursing home where I spent six long years of my life. I felt trapped and imprisoned simply for being disabled. The halls reeked of feces, urine, and harsh cleaning products, serving as a constant reminder of my confinement. During this time, I was surrounded by other disabled individuals who, like me, sought independence and a life outside these walls. Unfortunately, we also faced abusive and violent staff who perpetuated the belief that we were too disabled to live successfully in the community.
This experience cost me dearly—my freedom, independence, and civil rights were stripped away. I was unable to pursue the life I envisioned for myself. The institution’s environment was dehumanizing, and the assumptions made about me and my capabilities were degrading. However, I began to engage with advocacy organizations online that supported my desire for independent living. This connection gave me hope and a way to navigate through the oppressive environment I was in.
In 2012, my life changed when I was accepted into the Section 8 Housing Program and the Consumer Directed Personal Assistance Services (CDPAS) program. I found a wheelchair-accessible two-bedroom apartment, and for the first time in years, I felt a sense of freedom and hope. Living independently in the community has been transformative. In 2013 I moved into a one-bedroom apartment where I have lived for over thirteen years with the support of CDPAP and other home and community-based services.
Finding and maintaining affordable, accessible, and integrated housing has been a continuous challenge. The search for a home that accommodates my needs has cost me my youth and independence. Assumptions about my ability to live independently have created significant barriers, but I have navigated these challenges with the support of my community.
To me, home is everything. It is the foundation where we learn to love and be loved. However, we live in an ableist world, and it is our duty to advocate for homes and policies that uplift and center people with disabilities. The Latonya Reeves Freedom Act (LRFA) is one such policy that addresses the injustice of forcing individuals who need Long Term Services and Supports (LTSS) into institutions. It is crucial for government officials to change their attitudes and mindsets about who can live in the community and to enact policies that support independent living and accessible, affordable, inclusive housing.
My story is for those currently living in nursing homes and those who have experienced similar challenges. I want to inspire them to believe in the possibility of living independently and to seek out the support and resources available to make that a reality. We deserve to live in a world that fully and completely embraces accessibility and independence for the disability community.