Today I received some really good news. A group of people whom I do not know, and do not know me, decided that I may continue to live, work and make a meaningful contribution to society in Dublin for another year. Next year, this or another group may decide that I am to live in another county, with my parents forced to care for me, with no option but to sit at home draining the resources of the state.
Thankfully this will not be my reality, for the next twelve months at least. The reality for many people who are dependent on state funded personal assistance however, is that they must live their lives within the limitation of what an underfunded budget will allow. Whether the great potential that we all have within us can be realised, and to what extent, is dependent on a stranger’s evaluation of our worthiness to be added to names on a balance sheet. For those of us fortunate enough to be deemed “worthy”, or to have the agency to become so, we remain constrained by the bureaucrats and their budgets – forced to account for our time, and “their money” spent. Year by year, someone else decides whether our lives are being lived well enough (as if we don’t get that enough from family and friends!) to merit their continuation. All the while many of us have bodies which do the exact same thing on a daily basis.
Many people aren’t even this lucky. Institutionalised, incarcerated, often in their own homes with all the love and care that can be afforded to them, there is no substitution for independence and the freedom to choose how, where, and when to live your life. Without that choice, blessings become burdens; frustration and unhappiness breeds in often the best of situations. The reality of life with a disability is different for every person, no two people have the same life experiences, needs or dreams. But every person with a disability should have an opportunity to have those experiences, meet their needs, and realise their dreams. Whether we do or not should be determined by our own choices, not those of budget committee or evaluation board. Alas, that is not the reality of the world we live in. But it can be.