July 29, 2019

A year ago this week my former roommate passed away, August 1st.  My current roommate will die in a year or two.  I have to live with a person who believes that she has AIDS and we are “married.” I saw my former IRIS consultant at the Disability Pride Festival. She saw me signed up for my own apartment and said, “You can’t afford that.” I asked the person if there was any assistance to afford it. Her answer was a voucher.  So, I signed up.  My former consultant reminded me that IRIS is a self-directed program.  She thinks that I can’t self-direct anything.  An author self-directs all of the time.  She reminded me that the government is cutting more funding for long term care.  This is why I eliminated my counselor and reduce my broker’s visits to once every two months.  That’s self-directed.  Like picking up Thai take-out on Sunday because I wanted to.  I do things on my own and sometimes I sacrifice stuff because the government doesn’t care.  I’m just another cow living in a group home costing the state money.  This “cow” will be a New York author with a girlfriend.  The day of my funeral friends will fill the building unlike some people with disabilities.  That’s way off in the future.  There are dreams to come true.  Books to publish, plays to produce, places to travel to, and of course women.  Cerebral palsy doesn’t define me.  I’m going to make money and do what I want like disabled advocates do.  Life is short.  When it’s over, it’s over.  The government can shove it and so can Trump!

Why should I care?

July 24, 2019

Last week I emailed the owner of my care agency asking if I can keep my job with the agency.  I rewrite the meeting notes for the case managers, but there weren’t any notes for a month and I was still being paid.  The owner wanted to know how much I was being paid.  I became worried about losing my job.  The new director emailed me, asking if I enjoyed writing.  I laughed.  After saying that I was an author and putting my website at the end of the email.  She said that I can edit some documents for the agency.  A friend said that I should take the money without telling and I said it wouldn’t be right.  He reminded me the shit that I put up with like the daily nonsense and the government garbage about working for peanuts.  Of course, he was right.  Why should I care?  Or even bother to work?  My parents taught me to earn what I sew.  In college, I didn’t ask for any special favors or extensions from my professors.  I wanted to be treated like my classmates.  Before I went to college I had a man with Cerebral palsy visit me one day of the week to talk to since I sat at home watching the world go by.  He always was complaining about something.  Once he walked in and said, “My back is hurting me and I’m going home, but I earned my eighteen dollars visiting you.  I’m going home now.  Thank you.”  That taught me to never use my CP as an excuse.  In college, I only missed four days of classes and I did every assignment whether I liked it or not.  I earned the respect of my classmates and professors.  Last week I saw my publisher from Oregon and finished writing a screenplay.  And yet I’m underemployed.  This week I will sell my books at the Disability Pride Festival.  Next month I will write another manuscript.  And I can’t work or make an income.  The government can go to hell!

Unfortunate Tradeoffs

July 17, 2019

Four years ago I met a man when I was choosing where I was going to live.  “I’m sorry for your loss,” the fat man said while I was still numb from my mother’s death.  He was very patient with me as I adjusted to my new life.  I cursed him out several times and he read countless emails from me about this and that.  He moved a roommate so I could have an office.  I was given two rooms.  He hired me to work for the care agency.  People won’t hire or pay me for some reason.  Attendants, case managers, and roommates come and go like the wind.  I keep on writing.  Recently, my care agency decided to grow the company.  Twenty new houses in four months and then expanding to Wausau was just growing too fast.  Case managers managing five houses. The shortage of good care attendants led to the firing of the director.  Care and profit margins don’t mix.  I remember when meeting the owner of the company once, he said that care should be always come first.  ‘The care doesn’t get better with attendants’ low wages and a high turnover rate.  Some of the attendants don’t show up for work at $13-15 an hour for forty hours a week. It is barely enough for a person to pay their bills.  The consumers get the short end of the stick.  Making money has no business in long term care.

Naked Lunch

July 3, 2019

I had a new care attendant.  He was an African and had a difficult time understanding me.  That’s nothing new, but today he got me up in my electric wheelchair with just a Depends on.  I ate lunch naked at the dining room table.  I had a ride to go to the Memorial Union.  Luckily the bus was late.  My roommate was half naked, too.  Is this how we treat an author?  This is funny after the conversation I had with my broker and my counselor last week.  “Steve, you can’t make too much money or the State will take away your care.”  Why should I care about that when I sometimes receive inadequate care?  We are going to remove your services since you are making a few hundred dollars more than the $900 limit.  Sorry, Tina, we can’t take the New York book deal.  I can’t go over the $900 limit.  Yeah, right.  When pigs fly!  I will email the news media or go on Good Morning America.  Then the stupid government will wake up.  Then forget it.  The State knows who I am.  They hate the author.  I will keep writing books that no one buys or reads.  I’m just a failure.  The State doesn’t care about the disabled.  We are just bills.  Well, the attendant was fired for sleeping on the couch.  That’s funny when my interview airs on Wisconsin Public Radio people will read this and might do something.  That’s why I’m the author!