Sunday, July 28, 2013


Someone asked me recently, if I were given one day in which I had the opportunity to live disability free, how would I spend my day?  I guess it's silly because I know it can't happen.  There's no magic pill.  My CP is a part of me.  Without it, I would be an entirely different person.  My interests would probably be different too.  I have been disabled all of my life. Believe or not, the thought of not having my disability is scary because it's all I know.  However, having said that, I have to admit the question was a thought provoking one.

My first thought was I'd fly to California.  Some the best vacations I have ever had were trips to California.  I have always loved reading about France too, but never had the opportunity to go there.  Realizing both trips would take a lot more time than one day; I tried to think of something else.

The answer I came up with is a simple one.  I would spend the day taking care of myself.  I'd do all the things an able-bodied person takes for granted.  I'd get up in the morning, get dressed and get myself to the bathroom.  I'd spend my day free of caregivers. 

I have to plan everything.  I go out when I have a caregiver to drive me.  I am lucky I don't have to rely on public transportation because, as I may have mentioned in a previous post, transportation for the disabled has to be arranged several days in advance. It is also not dependable.

In order to stay alone for short periods of time, I even have to plan when I go to the bathroom.  I am sure not many able-bodied people have had to do that. 

Tomorrow morning, when you are getting dressed, stop for a moment and remember how fortunate you are not to have to rely on others to assist you. Don't take the little things for granted.  Circumstances can change in the blink of an eye.  Be thankful and grateful for the life you have. Even the struggles.  I know I am. 

Thursday, July 18, 2013


A report, on NBC News, last month shed light on the fact that in many states, disabled people who work for Goodwill Industries are paid well below the minimum wage of seven dollars and twenty-five cents per hour.  Workers in some states make as little as twenty-two cents per hour.  Because of a loophole in the Fair Labor Standards Act, passed in nineteen thirty-eight, paying disabled workers well below minimum wage is legal in this country. 

So, while the bosses of Goodwill industries are making millions of dollars, disabled employees are making almost nothing.  The rationale being that the workers don't really care about the money and they are just happy to have a place to work.

This issue is about paying workers what they deserve for the work that they do. Letting them know they are valued employees.  No able-bodied person would work for as little as twenty-two cents an hour.  Why should a person with a disability be expected to?  I'm wondering how those in the corporate offices of Goodwill Industries sleep at night?

I remember getting my first paycheck.  It was such a good feeling when I bought something with money I had earned.  I felt the same way when I sold the first copy of my children's book. Every disabled person who is employed deserves to know what that feels like. 

The disabled employees of Goodwill Industries just want to be treated fairly and earn a decent wage.  I don't think that's asking for too much.  Do you?   

Sunday, July 14, 2013


Cher. Whether you love her or hate her, hearing her name probably brings back a memory.  It may be a song you heard or you may remember those fabulous Bob Mackie gowns she wore on her variety shows.  That’s where I first saw her.  I watched the Sonny and Cher show every week. Whatever it may be, I know everyone has a memory.

I have been a Cher fan for more than half of my life.  I have some good memories.  Like the time I was out with my physical therapist in high school.  We had been to a record store where they had a life-size cardboard cutout of Cher. I thought it was the coolest thing I’d ever seen.  However, the store owner wouldn’t part with it.  We were in her car, ready to leave, when my therapist said she’d be back in a minute.  A few minutes later she came out of the store carrying the cardboard cutout of Cher. I never knew what she said to get the man in the store to give it to her.  After getting it home we noticed it had been promised to someone else. She must have told the man a really good story.   The cutout stood in my room for years.  It was a great conversation piece.  Sonny and Cher were doing a concert here and it was announced on the news when their plane would be arriving.  My mom and I hurried to the airport in hopes of seeing them arrive.  We mad it all they way to the gate, but were told we couldn’t stay to watch their plane come in.   We raced to the hotel where they were supposed to be staying, but we were told they weren’t staying there.  Probably the best memory I have is going to her concerts with my mom.  I know she liked Cher, but I think she liked seeing me have a good time even more.

Cher’s music has helped me through some difficult periods in my life.  The last time I had surgery, a psychologist told me to play her music to help ease my fear and stress.  Cher’s music was also paying while I wrote the remarks that were read at my m mom’s funeral.

My favorite Cher quote is: If you really want something you can figure out a way to make it happen.

I aspire to be like Cher.  No, I don’t want to sing or act.  Cher is a strong person who speaks her mind and doesn’t take the word "No" for an answer.  She never gives up.  

Thursday, July 4, 2013


I'm proud to be an American.  I'm blessed to live in a country where I'm free to express myself in a blog like this. I am thankful for the support system that I have in family and caregivers.  They help me lead an independent life

I had a student in my computer class once who was afraid of me. I believe  she was Vietnamese.  Seeing me upset her so much that she was in tears.   My boss spoke with the woman and told her that she had no reason to be afraid of me. Sadly, I think the woman dropped my class anyway.  I remember feeling strange because no had actually said they were afraid of me before.

I mentioned the incident to my brother who'd been a doctor in Vietnam.  He explained to me that in Vietnam disabled people were kept inside.  They never went out.  People never saw them.  I was probably the first person, with a disability, my student had ever seen.

Independence and freedom are not things I take for granted. Had my parents felt differently they could have placed me in an institution.  They didn't.  I had and have a good life.  I was able to get an education and hold a part time job. I have traveled and had the opportunity to meet some great people. I can't imagine being shut off from the outside world.  Not having the opportunity to experience life.

This day is about much more than barbecues and fireworks.  It's about remembering not to take the freedom we have for granted.