There are few questions I get asked as often as: why do I do it? Why is a guy who works in IT willing to pick up in the middle of a week and drive to North Carolina to help some Kossacks? Take off for Texas on a drive? Host an event in Kansas City? Travel throughout Kansas for four years now, trying to see what is possible?
I have had a few members of both parties who have wondered, openly and loudly, about my motives and means. Nothing has ever motivated me to do anything as much as my son, Augustus. I have written diaries about many subjects regarding the state of Kansas, some I have liked for their quality of writing, and some I have enjoyed, just to write my thoughts. None have summed this up as well as something I wrote years ago, about what motivates me, day after day.
I get asked, frequently, about where I come up with resources — money, time, and effort. There is always an assumption I am either a person of great personal wealth or a person with just unlimited time. In fact, I am just a person with fantastic support, who, like many Americans, lives one bad decision away from facing the kind of financial trouble that would leave us penniless.
When I write for sites like Daily Kos, I am not doing it for big money. Work done for the political party? It is also out of my own pocket. Cars I go through (two of them so far) to try and recruit or find candidates in multiple states? That is my expense, also.
Over the years, my son’s travails with mental health care, his disability, and his fight to be the best person he can be, have inspired me, motivated me, and kept me fighting for that which I believe is just.
Today, the state of Kansas notified me my son died. It was news to me, considering he is sitting in my living room, pondering what is for dinner, after a dental appointment today left him a bit sore. While it is good to know my son is, in fact, alive, the letter poses a real problem. Like many Kansans, my son waits on long-term care in the state.
I have been grateful for those who have encouraged and helped supply the means for those efforts, from Kossacks to politicians. Since the early diagnosis of my son, near 2001, I have meddled continuously, within both parties with a direct purpose: to improve the lives of those who need our help the most.
I have said, on this blog and elsewhere, it is hard to underestimate the lengths by which a parent of a special needs child will go to defend those rights, to protect those we love.
Today, hours before I received the letter from the state of Kansas, I wrote about the state of Kansas talking about service cuts again. About the long waiting list to get help for individuals like my son.
Here is the reality: until corrected, the notice of my son’s “death” is not just about his untimely (and incorrect) demise, it is about the thousands of dollars in medication he takes monthly that would suddenly come due to his parents.
With his 17th birthday recently behind us — August 3 — my wife & I have spent time pondering what happens next. Long-term residential services through independent living facilities are likely, and may be the best outcome. The waiting list in Kansas for those services is already long.
While this is certainly something I hope can be corrected, maybe with a trip to Topeka, I am reminded how many parents faced with this problem would struggle badly, immediately.
When people wonder about the kind of government you are being promised, I ask you again to look at Kansas. Incompetence in power. Ignorance of concerns. Heartless handling of those who need our support.
Mocking the disabled certainly makes for good TV ads. Destroying their lives through indifference is the kind of damage that families in Kansas fear daily.