Big health companies are replacing Dane County health long-term care system in a year.  Currently in Dane County ninety-three percent of the disabled are employed which is the highest percentage in the county.  This could all change when the big companies take over.  Most people with disabilities don’t know this, but I have been attending disabled meetings about this sad reality.  I think about my artistic roommate, who does laundry at a hotel four days a week for three hours a day.  He looks forward to going to going a work each day.  He gets paid and brightens the hotel with his smile.  His employer does small things for him like giving him a rose for Valentine’s Day.  The cognitively disabled need jobs or they will sit at home, watching TV.  It won’t affect me.  I have a career.  I’m the author with two publishers and an agent.

Aunt Nancy

June 19, 2017

I sat on the terrace, looking at the blue sky with puffy white clouds,
floating above.A cold wind blew making the lake choppy, but sail boats glide
across the water.  I talked to Aunt Nancy, the monarch of our family.  Nancy
was always there to talk to and listen to our problems.  She would smile at
you and offer her two cents of advice.  You took it or left it.  Most of the
time she was right.  Nancy didn’t want anything.  She never complained like
Mom.  All that she wanted was family.  Nancy, Uncle John, Uncle Larry, Dad,
and Mom are gone now.  My generation are the elders.  It makes me feel old.
Our lives are busy with commitments and careers, but time moves on.  The
pain that my cousins are feeling now I still feel.  Some days are easier
than others.  I miss Mom but I don’t miss her.  I’m an independent man with
another book on its way.  Sorry about not making it, but I was there in
spirit.

 

Going Out

June 19, 2017

I will go to Concert on the Square to listen to music.  I’m alone like always sitting on the square, enjoying the warm summer breeze.  It’s relaxing, but lonely.  Couples are everywhere.  Women smile at me, saying hi.  My heart jumps as I say hi back, but she walks away.  I listen to the music for two hours before going home to write until four in the morning.  Write another novel, trying to escape the pain of loneliness.  The career is meaningless without her to spend my life with.

Transitions

June 14, 2017

My case manager contacted the Department of Vocational Rehabilitation (DVR) for technical support for my communication device.  My occupational therapist at the Waisman Center resigned in June and suggested that I go to DVR technical support for the communication device.  We have been working on the communication device for about two years now.  This is a long story; I will make it short.  The communication device is incompatible with the electric wheelchair.  So I decided to not go to DVR, knowing that I wouldn’t get anywhere, but “DVR is new and improved” according to disabled advocates.  DVR wanted me to wait sixty days before getting evaluated for assistance, which meant another month of waiting and DVR wanted to know what kind of employment that I wanted.  I knew the first question the DVR counselor would ask. “How can we make you employed?” I imagined laughing and saying,” I am a real author.  Call my agent and my two publishers.” I told the counselor what I wanted.  The counselor looked at my business card and my two books.  “Very impressive.  Have you thought about going back to school?”  “I will be a New York author, ” I said, before walking out.  I don’t have time for that kind of nonsense.  The communication device is now working after spending some of my trust fund money.  I will buy a new computer to upgrade to Windows 10. I have XP Windows and that can be hacked losing all of my files.  My career keeps me alive and I take care of my business like repairs to my wheelchair and problems with care.  Writing is breathing to me.  Meanwhile, another book is being written.  Who does that?  An author. 

The Farmers’ Market

June 7, 2017

I will go to the farmers’ market to buy homegrown strawberries.  My favorite dessert is strawberry shortcake with vanilla ice cream.  I will make a meal of it like Mom and I used to.  I navigate my way through throngs of people looking at the produce, stopping at stands, getting lettuce, green beans, asparagus, rhubarb and of course strawberries.  I will have to buy some homemade strawberry jam.  Mom is gone now,  but I still eat vegetables and homemade food.  I used to make fun of Mom, going to the farmers’ market.  Now I go like Mom used to.  Vendors gave me free food or people will buy it.  I can get fifty dollars worth of food for twenty bucks.  That’s one of perks of having Cerebral palsy.

Values and Priorities

May 28, 2017

It’s Memorial Day this week.  A year ago Donald Trump promised to take care of our veterans with the best care.  No More waiting lists.  Well, President it has been four months since you took office.  The veterans are waiting.  The VA, like Medicaid and Medicare, are too big and with too many rules.  That’s the problem with our system, including the VA.  We need to treat veterans and the disabled as individuals not statistics.  The President wants to cut Medicaid by eighteen billion, destroying the lives of disabled Americans.  We asked too much of people with disabilities with rules and waiting lists which will get longer.  It’s sad how we treat the disabled.  Most Americans want a tax cut to spend on junk like cell phones while making disabled people wait two or three years for something that they need to live.  You have big trouble.  We can build an useless wall and make missiles, but we can’t take care of the disabled.  Why?  Someday the President will hear about the author, who doesn’t give up and fights every day.  Maybe he will tweet about me.  Then I will be a known author.

It’s Mother’s Day .  Mom, I’m all right.  I’m a lonely man with a career.  Yes, I’m naughty.  If you were still here, you would kill me.  Working crazy hours, drinking, and fooling around.  Let’s just say that I’m a man now.  Sorry, mom.  I can hear you say, “Steven, stop it.” I want to do what I do and I want to do it now.  I’m a man, who tries to cook, grocery shop, and manage my money. Yesterday I had a book signing at Barnes & Noble.  People wanted my books and asked for an autograph.  Imagine that, Mom.  Life isn’t the same without you.  I miss you.   I eat like we used to even though my attendants don’t like it.  I have found where you bought my favorite ice cream and learned the price of food.  Food isn’t cheap.  Sometimes I want to join you.  I used to make fun of going to the farmers’ market, but I go myself to get vegetables.  I’m independent and well.  Thank you, Mom.

Work

May 11, 2017

This week I’m critiquing papers for a speech instructor at Madison College.  It will be one of the final times that I will “work” since the instructor is retiring soon.  The one hundred and fifty dollars will be nice in my checking account.  I will probably save it and buy more produce at the farmers’ market.  I won’t make money writing.  People like me don’t have careers. or jobs.  I’m just an amazing guy according to people.  I have started a new book.  I’m just a writer.  One day I will die and the only people who know what I did will be my family and the English people.  It doesn’t matter to me.  I’m the author.

Yay Spring!!

April 24, 2017

Spring is here.  The grass is turning green and dandelions are popping up everywhere.  Birds are chirping outside.  There is nothing like it.  Ah, spring is like a fresh breath of air.

Taxed

April 10, 2017

It’s tax day this week.  People hate to pay taxes, but I would pay taxes if I was allowed to have an income.  I shouldn’t be penalized for having a disability.  The high cost of specialized medical equipment and my personal care isn’t my fault.  I’m a valuable member of society not a liability.  All that I ask is to be given good care and be allowed to pursue the American dream.