September 9, 2019

“Steve, is constantly complaining and he will email anyone he can,” an assistant of my care agency replied in an email to the new CEO and the new program director.  I emailed to complain about my case manager, who I see five minutes a week and doesn’t keep the house running properly.  Household supplies run out and my roommate goes without what she wants.  Ice cream and cigarettes namely.  That’s her life.  The case manager writes up good care attendants for being five minutes late.  Stupid stuff.  I received the email and I replied, asking for an apology.  The next day I received an apology from the assistant, saying, “I’m sorry.  We have over 100 consumers and over 400 employees.  You want something all of the time.  I see that your needs met.”  First, I’m an employee of the agency.  I should be editing manuals for the agency, but the assistant says that she had sent the attachment several times.  There are no attachments.  I’m being paid for doing nothing.  The case manager doesn’t deposit the paychecks in my checking account.  What did I do this week?  Let’s me see.  I sent queries to New York publishers of my newest middle-grade manuscript.  Also, I sent my screen play to a couple of people to read.  I sent my second memoir to a friend to edit.  I ran errands downtown because my case manager is too busy.  I have an accessible affordable downtown apartment in eight months.  My own place with two bedrooms, a bathroom with a roll-in-shower, a kitchen, and a living room.  Lindy can come, too.  I have three care attendants lined up already.  My agency will love the Wisconsin Public Radio story in October.  A radio crew is coming to the house to record the sound of Morse code for the story.  Another radio interview comes in early November.  Does my agency have anyone like me?  I think of only one person.  Most of our consumers are mentally incompetent, who don’t demand a lot.  Feed them they are happy.  I’m sorry that doesn’t work for me.  People demand a lot out of me and I expect the same.  I receive over $100,000 a year from the state to pay for my care.  I can’t earn an income because of all that money to pay for care.  Then if I have a problem my agency will hear about it.  If they don’t want a consumer like me, then the agency truly doesn’t know what an independent consumer.


School invites me back.

September 3, 2019

It’s time for school. I was at the Memorial Union Saturday evening writing in my head the next manuscript in the Sunset Lounge.  I saw that the doors to the Union Theater were open.  I drove inside of the theater’s lobby hoping to see the inside, but an assistant said, “Sorry, sir.  This is a student event.  I laughed imagining becoming a student again.  The English family would kill me if I did me.   That’s life even though this is the last semester of critiquing papers. I’m thinking of writing student’s papers for fifty dollars a paper.  Another attendant moved on to go to school.  She is young and a bit lazy.  I gave her tips about college.  Of course, it went in one ear and out the other.  She will learn.  Some of my staff calls me Dad.  I’m old.  I don’t feel old driving along University Avenue to buy a watermelon and vinegar.  Going downtown is home.  I was at the Taste of Madison today without an attendant.  My favorite attendant was hungover.  She stayed here sleeping and puking.  I was disappointed.  Of course, there was no meal when I returned.  I could have gotten take-out for supper.  A woman danced with me.  She is out there somewhere.  When I find her, I will treat her well not like my sisters.

Good news, bad news

August 28, 2019

This week was spent outside and downtown.  Home is too much at times.  Everything is written down.  What did I eat, where did I go, did I poop, did I pee, when did I go out and come back, and what were my activities for the day?  Supposedly the state looks at that garbage in order to pay my care agency to pay my staff.  I’m just a statistic costing the state money.  I go without what I need or want at times. It’s funny.  I have to live like that. There are politics at home with the staff. “Steve, email the manager about this or that.”  I don’t care about who did or didn’t do something or someone doesn’t like someone.  When I moved here, I played the politics game.  It was just a waste of time.  This week I finished a ten-minute play.  The producer of Wisconsin Public Radio emailed me, saying, “Steve, the story is too long.  Can you cut it or rewrite it?”  I do what every writer does when people tell us to rewrite.  I balked.  That’s natural.  So, I grumbled for an afternoon.  I went out coming up with an idea to write.  I started writing that night.  Two nights later it was finished.  I emailed it to the producer and I went out.  Later that night I checked my email.  The producer replied, “Steve, this is fantastic.” That’s an author’s life.  I sat at the Memorial Union thinking for hours about the next manuscript that I will start this week.  But my agent still hasn’t read my newest manuscript.  She gave me the go-ahead to write another manuscript.  My heart doesn’t know what to do.  Then my IRIS consultant says, “Steve, don’t go over the income limit.” I don’t care anymore about that.  One of my attendants is so uneducated and can’t even go to the grocery store to get ice cream.  And I have to worry about income.  It’s stupid.  I’m taking the money anyway.  ! The State!  They will gripe again this year like always and I will get mad.  Sometimes it would be easy to quit.  Someday I will be a New York author.

Life on

August 19, 2019

I went to church today.  No, I didn’t laugh.  I didn’t find her. Oh well, at least I sold a couple of books.  It was a long week.  The battery was dead on the electric wheelchair.  The wheelchair vendor said that he couldn’t come until Tuesday.  I have places to go and people to see.  So, I got up early Wednesday to get a new battery.  An old camp counselor contacted me.  I still remember being tipped over in a canoe in the Root River.  She was joking around and canoe tipped into the muddy water.  I had a crush on her.  That’s nothing new.  Friday I went to my bar and saw the guys.  I had to fix the wheelchair the power switch came off.  Little Velcro and superglue put me back in business.  Saturday I went to the farmer’s market and afterwards I drove to the Memorial Union to attend a writing retreat.  A day with writers.  I picked up a sub from my friend’s shop for supper.  After church I went to the Memorial Union, I sat by the lake when my friend Busy came.  We had a beer watching the sun set.  My attendants tried to mess up my weekend like not showing up to take me to the bathroom and leaving my wallet on my bed.  That’s life.  My roommate is hidden away, but I’m living life to the fullest. And today I have a reading of my screenplay.

Lucky Steve

August 12, 2019

It’s been four years since I moved here.  It doesn’t seem possible.  Yet I deal with the same problems.  Last night vomit sat on the floor and excrement filled my pants.  I ate too many fresh vegetables and watermelon.  When I woke up my nineteen-old-year care attendant to put me to bed at three o’clock in the morning, she wasn’t too happy with me.  “Really, Steve.  I have to clean this up and I get paid $13 an hour.  And I have to handle this when I made $15 an hour at a behavioral house doing nothing.” She threw her hands up in the air and said, “Ugh.”  She’s right.  This house is a behavioral house even though it is a medical house because I live here.  That doesn’t make any sense.  It’s all about money.  I would die if I could make $13 an hour instead of working for peanuts.  That’s the stupid government for you but not many disabled people work like I do.  Today I went to the grocery store and bought a month worth of food.  I was three dollars over, but I pulled my debit card and paid for it.  The refrigerator is full of vegetables and fruits.  My roommates have their TV dinners and frozen crap.  My case manager shops for my bipolar roommate when she isn’t too busy and buys not enough food to last two weeks.  It’s sad.  Of course, my roommate doesn’t know that.  If there is food in front of her, she will eat it like Mikey.  I gave her chocolate chip mint ice cream and a dill pickle with pickle juice.  She ate it.   She always says, “I have money, Honey.” This is the hard reality for some people with disabilities.  They sleep and eat without a voice … like the government wants.  I think about that when I sit by the lake or on State Street having a beer with my friend, Busy.  Staring at the evening sky I see how lucky I am.

“Steve, let Kathy have some corn,” said my favorite care attendant.  “No, I bought it and don’t feed her,” I replied.   I got up early Saturday morning and went downtown to the farmer’s market to buy vegetables.  The first week of corn was available and I bought two ears.  It was delicious!  “Steve, there’s no laundry soap,” said another attendant.  “Okay, I will pick up some,” I  answered.  “Can I shave, please,” I asked.  “You don’t have any razors,” the attendant said.  “Okay, I will get some and some Raid because the house is full of mosquitoes. Give me forty dollars, please from my dresser drawer. “So, I go to two Walgreens to pick up the items.  That’s nothing new.  I almost was run over by the Pub Trolley, but it was full of pretty women.  I laughed, saying, “Sisters, this is how I want to die  with women at my side.” At the bar, I met a man from Los Angeles in town for the CrossFit games.  I had a drink.  The overnight attendant didn’t wash my shorts and I went to the market with jeans on.  My case manager doesn’t work on the weekends.  In fact she comes in one day a week for five minutes.  She manages five houses.  I spent the day at the Memorial Union.  I got thirsty and I went to my bar to have some water.  When I came home, I had a pot roast waiting for me.  “Steve, Kathy doesn’t anything to eat.  Can she have some of the roast?” the attendant asked.  “No, that’s not my problem,” I said.  When I wanted to get up, the attendant said, “I’m tired.  You can wait to get up until the third shift comes.  You want something every five minutes.  No one wants to work because of you.  Your roommates are easy, but you’re just a pain.”  The attendant had worked twenty-four hours griping at the low pay.  She is nineteen and starting college next month, a typical nineteen-old-year, who thinks that she knows everything.  She will learn in October what work is.  I’m not my roommates.  Sorry!  I’m a man with responsibilities, a part-time job, and a career.  I’m not my roommates, who need help.  I’m independent!  It’s hard, but I can do it!  Today my agent will email me about my newest manuscript.  “Why can’t you go to bed like they do at seven instead of three in the morning,” the attendant asked.  I didn’t answer.  It hurt, but I have heard that before.  I know who I am: an author.  Not someone whining for ice cream or a cigarette.   


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!