Despite numerous challenges and difculties, as well as failure and opposition, my steady persistence to secure a home for myself in my old community of Castlebar has been constant. I am not alone in my struggle for self-contained living. There are countless other individuals also seeking to find a place to live on their home turf and move out from a clinical residential setting. Unfortunately, independent living and equal rights appear to be only theories put forward in an ideal world. I have experienced in the past nine years that independent living is a daily fight and unattainable to so many.

I have witnessed people becoming afraid to ask for what they want as the focus shifs to what they need just to survive.

Things are tight at the moment. There are people out there who are incarcerated by circumstances out of their control. Many are living in hospitals either because their own houses are not wheelchair accessible, or because there are not enough ‘community supports’ like home helps and personal assistants, and it annoys me. It bothers me to hear about disabled people who are ready and willing to con tribute to our economy being stuck at home because only their personal care needs are being met. It infuriates me sometimes that I was naively led to believe that disabled people could ever be viewed as equal when the story on the ground, as well as the lived reality, seems to be disturbingly different. This congregated building I was placed in after the hospital was meant to be for a three-month respite period. From there, the plan was to progress to a home within the community where I could live independently. Nine years later, I am still here living in a cramped room in a congregated setting.

It has been a long struggle with the ruling bodies assigned to aid my recovery. At times, I feel I am no further along in my battle than the day I arrived here.

I’ve seen many others around me that had to deal with unbelievable situations. From lacking government support to medical equipment that is making situations worse, when it shouldn’t be happening.

For more than a decade, there has been efforts across Ireland to promote the transfer of people with disabilities from congregated settings to community living. Research finds that community living, not congregated living, enables people with disabilities to enjoy a higher quality of life. HIQA reported higher levels of overall health and wellbeing compared to those living in congregated settings. Residents who moved to smaller community homes consistently told HIQA inspectors that they were happier and had a better quality of life compared to when they lived in campus or congregated settings. One reason for this might be that smaller community homes promote increased personal freedoms and control over one’s own life.

In other words, community living empowers persons with disabilities to live ‘an ordinary life’. These findings are important. Independence and freedom are basic rights that are advocated for and protected under the United Nations Convention on the Rights of Persons with Disabilities. Yet securing community living has proved dificult due to inadequate funding and the current housing crisis, a situation exasperated further by a global pandemic. Despite numerous difficulties, I felt I had finally made progress when Mayo County Council offered me a house in Castlebar in May 2020. I felt a flutter of excitement creep over me as plans were drawn up to adapt the house to suit my needs in a community surrounded by family and friends and much-needed support. Sadly, four months later, I learned that ‘due to the Covid pandemic, funding was no longer available to complete renovation work’. I was back to square one with a reminder that there was ‘no guarantee funding could be gotten and how long all would take’. So once again I waited in limbo until whenever ‘the situation changes’ and ‘resources become avail able’. Hopefully, by Summer 2023 I will be celebrating moving into my own home, closer to living independently in my home environment of Castlebar surrounded by family and friends living my best life. It has been a long journey home.