A Different Way Of Being
I am now finished with work on my 3rd book 'A Different Way Of Being' which I have been laboring intently on since 1996 the year I printed my 2nd book 'When The Evening Dies.' I had been working on a book called 'The Millennium Project' which was almost complete when breaking my neck made me change direction midstream. I decided after getting out of the hospital that I wanted to leave something that would imprint lasting impression on people with disabilities; a group that had been brutalized, sterilized, medicated, victimized, isolated, warehoused, and even murdered just because of being different from what was viewed as normal. Culture and society had deemed our lives unfit and unworthy of living. For millennia we had no voice, no identity beyond beggar status or that of monstrosity. It was accepted that should one have to live in disability, one would be condemned to exist in the shadows of society, hidden away from public view. With no art, culture, or positive role to identity with or relate to, we as a population had allowed ourselves to be swept under the rug, shoved into the closets, and locked away from world view.
But now there is new calling for people with disabilities, no longer content with being treated as second class citizens or just wasting away with no involvement in life and living; to come together and give new definition to who and what we are as pronounced by our own measure. With national groups like ADAPT, NOT DEAD YET, and statewide movements like UNLOCK THE WAITING LISTS, fighting for our right to live and have access to equal civil rights; a whole culture, population of people was/is emerging to declare we want to decide our own choices. There is no good reason for us to still be at the mercy of a system of long term care that was set-up decades ago and fails to administer to us our most basic survival need, while at the same time warehousing us callously out of bias judgment. Everyday more are added to our numbers. Everyday more people need just a little assistance to go on again with their lives, finding renewed hope after having sense of self stripped away by initial injury.
And so when I left Shepherd I knew I would write a book that would address all these concerns. Being on borrowed time, every moment my first and last; I wrote with the idea we are promised no tomorrows, and so split off from working on 'The Millennium Project' and moved whole heartedly into 'A Different Way Of Being.' If I did not have time to devote myself to more than one book then I wanted to leave a legacy that humanized my experience as a quadriplegic specifically for people who would later need a guideline, a journal of experience that might help others reassess and reinterpret their own views of life according to what someone else had gone through. I have been very fortunate in my life pre and post disability and my books in a series represent that. Even now with a high-level disability, I am fortunate to live the way I choose without being imprisoned in nursing home or institution. I am lucky to decide every decision of my every day thanks to the Independent Care Waiver and 22 hour a day care. That is not yet the right of every person who depends on the assistance of others. For many that is the farthest imagining possible to what is now their true life experience. And so I dedicate my life to utilizing the skills I have to represent independent living and its possibilities; and to support ADAPT, NOT DEAD YET, and the UNLOCK THE WAITING LISTS movements to procure community based services and choice in long term care. Please if you are not already support MiCASSA (The Medicaid Community Attendant Services and Supports Act), S. 971, co-sponsored by Senators Harkin, Specter and others, requiring states to provide community based attendant services to individuals with disabilities and older Americans and The Money Follows the Person Act, S. 1394, co-sponsored with Senators Harkin, Smith, Specter and others, giving states additional resources to provide home and community-based services to individuals choosing to leave a nursing home or institution.
In 'A Different Way Of Being' I try to share how blessed I am to live the way that I live and show others how to access the same programs so that they can advocate for themselves in the same way. It took me getting involved with advocacy to establish the right contacts to change my life. Now each day I awaken I cannot help but be in such love with all I see and feel around me that everything I do is but a celebration of that fact. In every moment I praise the Creator for all that which is, as it is, and for my involvement in it. I've had a feeling all my life that my role in this moment of history was somehow special. I didn't know exactly how or why, I just knew that my life was and would be different from the ordinary. And so I have lived my years based on that precept and have tried to live up to that expectation. I didn't know before that it would take acquiring my disability to truly give me that direction, but now I know exactly what I must do.
I am honored to have chance to declare my feelings, thoughts, loves, philosophies, and views for others to see. It is special to me to have an audience with which to share with. I give thanks that anybody would hold my opinion worthy enough to take the time to read the words I have carefully lain to paper. In my work as in my life I just try to convey that which lead me to realize the things I have. How lucky all of us are, to behold the opportunities and chances which make up our every moment. To even be able to consider how it was that over a span of time, whatever happened, happened to bring the evolution of conscious to this point that we have ability to question and answer and seek to answer anything mind can entertain and soul could want to pursue.
Everyday I wake up from dreams and look out on to world flabbergasted by the awesomeness of all I see. I know that I am blessed to have access to community based services when so many people in so many parts of our country do not. So I have dedicated the past 8 years to write this book which honors those who were not so fortunate, who have died in nursing homes unable to wait any longer. It is to their memory that I dedicate the poems of this book. Everything that I have been privileged to learn inspires me to work harder for equality for all people. In all of my books and articles I try to share a perspective which honors all life and the beauty and miracle associated with simple being. I want to leave for those who would go through acquiring disability, being thrust callously into a world they did not understand, a sense of direction, of come I await you this way leads to paradise.
"A Different Way Of Being" is a poetry book of 327 pages and chronicles my life over the past 8 years including a whole chapter dedicated to September 11th, 2001. Should you want to order a copy of 'A Different Way Of Being' please send check for 18 dollars which includes shipping to Endeavor Freedom, Inc. 39 Alexander St, Winder, GA 30680. 100% of the proceeds of this book go to support Endeavor Freedom, a Georgia based non-profit that supports improving access for people with disabilities to sports, recreation, and other quality of life issues.
To support choice in long term care please check out the following web addresses:
http://www.adapt.org/, http://www.notdeadyet.org/, http://www.gcdd.org/programs/unlock/,