Monday, April 28, 2014


Last week I had a new caregiver for two days. This is always stressful for me as do not adapt to change well. I have had the same three caregivers for several years. .They are used to me and I am used to  them. We work well together.

When I have had a new caregiver in the past, the agency has allowed the new caregiver stop by my home so that one of my regular caregivers can show them how to transfer me as well as  other things that need to be done for me. This was not done last week, although I was assured by the agency that the new caregiver could perform the type of transfer I needed. I was told by the office, "She's the best worker we have." I prayed that she was

The caregiver would not take direction from me at all. She would not do a transfer where she would assist me in standing  up and I pivoted. She lifted me up out of my chair and placed me on the toilet.  I told her again and again she'd hurt herself if she continued to physically pick me up as she was doing. Sure enough, by the end of the day, she was complaining that her back hurt.

A person who's disabled knows what works best when someone is assisting them. Caregivers should be open to taking direction from their clients. And, clients should be open to trying new ways of doing things.

If you are a temporary caregiver, ask your client if there is anything they'd like for you to do.. Please don't  use the excuse of, "I'm just filling in. I don't know the routine," then watch TV and make plans for the weekend on your  phone. A client's house needs to be clean. it doesn't matter if your a temporary caregiver or not, the client's needs still need to be met.

I learned a valuable lesson last week. Never fail to appreciate your caregivers. Never take them for granted. I have three of the best caregivers. They help me and Lucie in any way they can. We'd be lost without them.

Tuesday, April 15, 2014


If you have read my blog from the beginning you know that I attended college and graduate school well before the passage of The Americans With Disabilities Act. When I started Meamec Community College, in nineteen seventy-six , offices for the disabled didn't exist. There was one man who was a counselor for the disabled. I went to him for awhile.  After I got into the Human Services Program, I no longer needed his assistance. I was responsible for taking my own class notes (I transcribed them from a tape recorder.) and making sure I was given extra time, if I needed it, when taking tests  There were no automatic doors and elevator buttons were out of my reach which meant I was always waiting for someone to either open a door or push a button for me. The college did have a campus nurse who helped me to the bathroom during the day. My time as a student at Meramec was one of the happiest in my life. The faculty and staff supported and assisted students with disabilities long before it was required by law.

I obtained my Bachelors Degree in Human Services from Fontbonne University. I was the first student ever to use a power chair. A ramp was put in at the entrance to one of the buildings. There wasn't a nurse available, so I had to find someone to assist me during the day. The secretary from Student Services helped me whenever I needed it. By the time I got to Fontbonne I had discovered carbon paper. The first day of class I would go up to someone, introduce myself and ask if they'd mind using the carbon paper so I could a copy of their notes. I made some good friends in the process too. I was in a dual enrollment program with Fontbonne and The George Warren Brown School of Social Work at Washington University. I was only on campus at Fontbonne for a year because in my senior year at Fontbonne I began working my Masters at Wash U. The credit counted for both degrees.

This post is titled A Long Hard Road. I wouldn't say at the first two schools the road was that hard, frustrating at times maybe, but not hard. The title definitely fits for Wash U. The school made it clear they didn't want me there. My first advisor said he'd rather see me fail than help me. I registered early so that all my classes could be moved to the only two classrooms on the first floor. a ramp was put in so that could actually get to the first floor from inside the door. Changes were made in one of the restrooms to accommodate my chair The first year I could get to the Student Center. The second year construction work was being done and I was unable to go there as a result. In between classes I was in a little room used by part time faculty I studied because there was nowhere else to go. I was isolated and alone most of the time, especially that last year. My last semester I took four of the most difficult courses because my first advisor failed to tell me about them. They almost did me in. A dean tried to put me at the end of the line for graduation, but my second advisor intervened.

Some of this I may have written before. I think it's important to remind young people with disabilities things weren't always the way they are  now. Services weren't provided. Schools  could tell you they didn't want you. You had to find ways to get what you needed on your own. Sometimes I think the ADA has made it too easy .I'm glad I had to find ways to get the things I needed on campus myself. I think it made me stronger.

It was a long, hard road, but I made it.

Monday, April 7, 2014


I have been having difficulty coming up with meaningful blog posts topics. I thought about writing about getting a new laptop and my struggles in going from Windows XP to  Windows 8.1. I wrote approximately two paragraphs and was bored, so I knew you would be too. I thought about writing about how professional my caregivers were in getting Lucie and me to a safe place in my house during the storms last week. But then I remembered I'd been there and done that. I even thought about writing about updating my resume, but who wants to read about something as mundane as that?

Then, I had an idea. Cher will be making a stop in St. Louis in June during her Dressed to Kill Tour or as she calls it her, "Farewell, Farewell Tour." I'm going to try to get a letter to her. One of Cher's friends is on Twitter. I plan to tweet her daily in hopes of getting a reply. 
I figure her friend will either reply or block me. I couldn't write about that. No one would take me seriously as a writer. You'd all stop reading my blog immediately

What I can write about is that dreams don't always have to be sensible. Sometimes you can go after something just because you want to. Because it would make you happy. So what, if people think your dream is silly. It's not their dream, it's yours. I encourage you to dream outside of the box once in a while. Your dreams don't always have to change the world. Sometimes all that matters is that they are important to you.

Just remember that without  our dreams we'd be dead. A good friend told me that.

I plan to make the concert the best night I have had since my mom died. if I am able to get a letter to Cher, it will make it even more special.

I have told you my "silly" dream. I'd like to hear some of yours. Leave me a comment here, Facebook or Twitter.