Preface to the Writing
This month's writing is called the Desiderata of Independence for Persons with Disabilities and reads more like a manifesto and, indeed, it could be viewed as such. However, it is a desiderata which is the plural form of the Latin word desideratum. A desideratum is, according to Merriam-Webster's Open Dictionary, "something desired as essential." Therefore, a desiderata is a list of things desired as essential. I wrote this piece at the end of a dark time in my life before which I had been confined to an institution because Nebraska law then did not allow private contractor care aides to do the invasive forms of care I needed done. I was able to change the law through the so-called Tim Kolb Amendment to the Nebraska Nurse Practice Act. It allowed me and other persons with severe disabilities to be able to direct their own care and live independently outside of nursing homes. However, I knew that many decades of the exclusive use of the Medical Model of care had convinced the general public that this was the only safe and scientific way to provide such care. So, I needed a way to declare that persons with disabilities need to be able to be free like everyone else and yet remain safe in their own homes while receiving the necessary and appropriate care they required. The struggle to write such a declaration manifested itself at night when I was lying in bed staring at a dark ceiling. Out of that darkness. I imagined arguing with disembodied voices that opposed everything I thought was true. Night after night, the arguments went on until, finally, the right words came, a list of desires of things essential:: a desiderata !
