Monday, September 16, 2013


Last Saturday was a beautiful day.  The sky was blue and the temperature was in the seventies with a light breeze.  The perfect fall day.  I was happy because I'd  had a book signing at a friend's bookstore.  A couple of people came in and bought my book and three had been sold since the last time I'd been in, making a total of five books sold. It had been a nice afternoon visiting with Robin, the owner,and selling books. The perfect day until ... 

My caregiver and I decided to go out for dinner to a well known seafood restaurant.  We were taken to a table. A few minutes later our server came and asked what we would like to drink.  I always have a glass of wine if I go out to dinner on a Saturday.  I told our server the wine that I wanted, at which time, he glanced at my caregiver with a look that asked, "Is it okay for her  to have wine?"  My caregiver nodded that it was and our server brought my glass of wine.

This  may not seem like a big deal to you, but every time an incident like this occurs, I'm reminded that there are still some people who view me as different from everyone else.  People who see the wheelchair and make assumptions that I can't think for myself.That I wouldn't know not to order a glass of wine if there were some  medical reason why  I shouldn't.

Several weeks earlier, we were at the same restaurant and our server was speaking to my caregiver about my order rather than to me.  I asked our server to speak to me directly.  I was clear about what I wanted, but our server brought the wrong salad.  My caregiver told our server that I wanted shrimp in my salad, not chicken.  Our server offered to make another salad, but it would have taken too long.  I ate the salad with the chicken in it.  The good news, I was given a free dessert because of the error.

Disability awareness and sensitivity training workshops or speakers should be made available to anyone who is a restaurant employee. I don't know how realistic it is to expect managers to provide this kind of training.  I just know that it's needed. .I'm asking anyone reading this post, who is employed at a restaurant, to always remember to treat a person with a disability with the same dignity and respect that you would show any other patron you were serving.  Listen to them.  Don't assume that just because they have a disability, they can't think and speak for themselves.  

I always think we have come a long way.That people have changed their opinions about people with disabilities. That they know we're just like everyone else. We just do some things differently. Then, an incident happens, like the one that happened last Saturday,and I see, while we have come a long way in the acceptance of people with disabilities, we still have a long way to go.

Wednesday, September 11, 2013


I saw this video on The Today Show.  It made me cry.  I saw young girls and woman with disabilities competing in a beauty pageant.  As the contestants walked and rolled across the stage,. they were radiant not only in  beauty, but in confidence as well.

The pageant was started by Jordan Somer, who had been in pageants herself when she was younger. Competing in pageants taught her self confidence and commitment.  She learned that success wasn't about coming in first, but rather, about taking control over who she would become.  Ms Somer has also worked with the Special Olympics where she saw first hand the determination and commitment of the athletes.  

Miss Somer wanted to share the pageant experience with girls who had disabilities. The first Miss Amazing Pageant was held in Nebraska in 2007.  The only requirement is that contestants give five cans of food. The first job of the pageant division winners is to distribute the cans of food to homeless shelters.  It's a way for the girls to be involved in their community and to learn about the importance of helping others and giving back.

The pageant builds self-confidence and self esteem and promotes inclusion of girls with disabilities in their community. Through the encouragement and support of the pageant organization, the girls strive to reach their full potential, to be the best that they can be in life.    Girls in the pageant learn they can set goals and achieve them. When I was watching the video I saw how proud and happy the contests were. They knew that they were just as good as anyone else.

I want to applaud Jordan Sommer for creating The Miss Amazing Pageant. I would have given anything, to have had  an organization like hers available to me  when I was growing up. (I received very few positive messages at the school I attended.) A place that would have helped me overcome my issues with low self esteem.  A place that would have encouraged me to set goals because through hard work and determination I could attain them.  A place where people knew I deserved the opportunity to reach my full potential in life .A place that let me know I was worth it.

Thursday, September 5, 2013


I graduated from The George Warren Brown School of Social Work in nineteen eighty-two. In my last year of graduate school I had two internships.  The first was at a children's hospital.  My boss took me on in the hopes of getting me a job as the social worker for Shriners Hospital.  At the time, the children's hospital was providing a social worker for Shriners. I remember meeting the social worker at Shriners every Friday.  I had a good rapport with all the patients.  That stemmed from the fact that I had been a patient there.  The children knew that I could relate to what they were going through better than anyone else.  I led a weekly group for teenagers where they could come and share their feelings about being in the hospital. I enjoyed it immensely. Unfortunately, Shriners would not consider hiring me because I hadn't had two years of work experience.  When my boss at the children's hospital learned this she wouldn't give me any other responsibilities. Other than making phone calls to remind parents of their child's clinic appointments, I did very little.  The internship was supposed to last for two semesters, but my boss ended it after only one.

My second internship was at an organization that offers health care to low income families. I was an intake worker.  My main job was to asses a client's needs and refer them to the appropriate place. I mainly gave out vouchers for food and bait to catch rats. The organization had no funds to pay me; however, they did offer me a volunteer position. I declined.

I was home foe two years after graduation.  I sent out resumes, took the state tests and the only jobs I was ever offered were the jobs no one else wanted.  Night jobs and jobs at psychiatric facilities.   The last interview I went on was at a psychiatric hospital.  The position involved working with adolescent girls. When The woman asked me what I would do if one of the girls turned my chair over, I had no answer  The interview ended.  .  

I have written in a previous post how I got my job at Meramec. An instructor gave up his lunch hour to teach me and to other young woman with disabilities word processing. The other two quit, but I stuck with it.  I saw a need for individualized instruction, especially for older adults, while volunteering in the computer lab. With the support of those in the lab, I developed the syllabus for the class and presented it to the dean.  The funding for my class almost got cut after the first semester.  Luckily that didn't happen The dean made sure I had a job, with Continuing Education, for as long as I wanted one.

While teaching at Meramec, ,I  tried to get a job as a sales rep for a well known greeting card company.  The rep for the area was in her nineties.  she did almost everything out of her house and on a computer.  She told me the job would be too difficult for me during our one phone conversation. 

I'm now trying to become a freelance writer/journalist.   There may be rejections along the way. That's okay.  I just have to be patient..I know that it will happen.

Monday, September 2, 2013


A friend emailed me a quote from an author she knows. "When faced with adversity you have a choice.  You can choose to be a victim or a warrior." I began thinking of times in my life when I allowed myself to be a victim as well as times in my life when I have been a warrior. 

I started the public school for the physically disabled at the age of six. Even at that young age, I knew I didn't belong there, but it was the only option available as my parents couldn't afford the tuition it would have cost to send me to school in the county. The first six months I didn't participate in much of anything at school.  I guess I was waiting for my parents to realize that they'd made a mistake and take me out of the school.  I desperately  wanted to attend the school in our neighborhood that my brother went to.   I finally realized that that was not going to happen.  I resigned myself to staying and, as you know, was there for thirteen years. To say I was a victim academically and socially from being at the school is an understatement. I have written about the school before so it's not necessary to repeat myself.  The education I received was lacking in so many ways.  Being at that school is the only time in my life where I was a victim of circumstance and there was nothing I could do about it.

I have always had trouble standing up for myself.  My classmates would make fun of me at school and I didn't talk back or do anything about it.  There was no point.  If they thought I was a nerd, so be it.  Even today, I don't always stand up to people. when  I should.   I'm  happy to say I'm getting better at it.

The first time I stood up for myself was when I was a senior in high school.  My mom had talked to one of the other mothers who had a son at my school too.  She convinced my mom to keep me in high school five years so that I didn't graduate with the children I had gone all through school with. I put my foot down, however, when the woman said my mom should send me to the United Cerebral Palsy Center rather than my going on to college as my brothers had done.  I told my mom if she sent me there I'd never speak to her again.   She knew I meant it. My going to  the center was never brought up again. The center's a great place for those who choose to go there.  It just wasn't the right choice for me.

When my mom was sick and on hospice I became a warrior for her.  I wanted to make sure her wishes were carried out and that she got the best care possible.  I wanted to make sure she stayed at home and didn't die in a hospital.  I did everything I could to make her comfortable and happy.  I'm a warrior for Lucie too.  I'll do anything I can to make sure she's happy..

I'm a warrior for myself because I want the best caregivers  and the best care possible.  if I don't feel a caregiver is right for me,  I ask for a replacement.

Being a warrior isn't easy.  Fighting for what you want and believe you deserve.  Sometimes the fight seems to difficult and you may want to give up.  But giving up is not an option.  You can't just be a victim and let life happen to you.  You have to be a warrior and a participant   Stand up for yourself so you can have the best life possible.  It may not be easy, but it will be worth it.