OUR FUTURE

I was saddened to learn that the increase in Social Security for 2014, will be the lowest since nineteen seventy-five. About one point five percent People with disabilities and senior citizens depend on their Social Security and Supplemental Security Income Checks to live. I love my country. I am proud to be an American. We are a nation always willing to lend a hand to other nations,

to help them learn to live in peace. Sometimes, though, in our willingness to help others, we may forget that there are people right in our own backyard who need help 

How can the increase be lower when the cost of food and utilities keeps rising/? I’m worried about the future of Social Security, and Medicaid. If these programs disappear in the future, what will happen to the disabled and seniors who depend on them to live independently? If I were to go on Medicaid, I would only be given approximately six hours a day attendant care, five days a week. I need 18 hours a day every day. I would probably be placed in a nursing home.

A friend of mine, on Medicaid, once had to wait several days to have their medications refilled because their social worker was out of the office. This same friend needs some new equipment to assist them in their personal care. They have been trying to get in touch with their social worker, but the social worker has not returned my friend's calls.

My parents worked hard and saved their money because they knew I’d need care to live my life. I wish there was a program that would pay part of my caregiver expenses so that my funds could last as long as possible. When I told a social worker that's what I was looking for she said, "No agency is going to help with something like that." 

Services for the disabled and seniors need to be improved not cut. No one should have to wait days for their medication because a social worker isn't available to sign a form, or too busy to return a phone call. No one should have to risk depleting their funds trying to live the best life they can.

I am worried about our future. I hope that programs and services for disabled and senior citizens will be better in the future. The programs and services that have been cut will be restored. Maybe that's wishful thinking. Something needs to be done so that all of us can live the life we want and deserve.

IT'S COOL TO BE A DIVA

A reader suggested I change the name of this blog to Confessions of a Disabled Warrior. I can understand why. People with disabilities fight battles every day.  They fight to be accepted and respected by society. They have to work twice as hard to prove that they are as good as everyone else.

They went on to say that if they didn't know me and they were surfing the internet and saw my blog title they would ignore it because the title wouldn't grab their attention. Because I want to expand my readership. and because I value this person's opinion, I thought seriously about changing my blog's name.

I always thought Confessions of a Disabled Diva would be the title of my memoir. Since I haven't started writing my memoir yet, when I got the idea for this blog, it seemed like the perfect opportunity to use the name. It 's cute and catchy. However, until a few weeks ago, I had no idea what the word diva really meant. One Sunday afternoon I found out.

The word diva is typically associated with opera singers and other famous singers, Divas are people who'll do anything to get what they want, not caring who they hurt or what it cost them. I also read something about a diva being a woman who's into high fashion. None of these definitions describe me. I love to shop, does, that count as being into high fashion?

There was one definition I read that I liked. A woman who achieves success through hard work and determination can be thought of like a diva. I am determined to have this blog reach as many people as it can. It's happening already. I have readers from all over the world. I'm amazed.

Author J.K. Rowling is a diva. Harry Potter was rejected countless times by publishers. Rowling did not give up until her manuscript was accepted by a publisher

I'll keep the name Confessions of a Disabled Diva. I have to be honest, it's cool to be called Diva by someone who knows me and reads this blog. When you think of the word diva in relation to this blog, remember the definition that spoke about hard work and determination because that's the kind of diva I am. 












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HELP WANTED

Disability Employment Awareness Month is celebrated nationally during the month of October.

In nineteen forty-five, Congress passed a law making the first week in October "National Employ the Physically Handicapped Week." In nineteen sixty-two, 

Congress dropped the word physically from the name of the law so that people with all types of disabilities could be included. In nineteen eighty-eight, the name was changed to its current one, and the week was expanded to a month. This year's theme is "Because We Are EQUAL to the Task.'

Those of us with disabilities, who are able to work,  want to work.  We want to contribute to society. We want to feel good about ourselves.  We want to know that we are making a difference. Our skills and ideas need to be utilized in the workplace.

 All it takes is for employers to see past a person's disability and give them a chance to prove themselves. It also takes a willingness on the part of an employer to make the "reasonable accommodations", to enable a person with a disability  to do their job effectively  

The staff at Meramec gave me a chance.  I developed a class.  The college's continuing education department saw how my class could be an asset to the department's curriculum. I taught that software class, part-time, for sixteen years.

I encourage employers to give a person with a disability a chance. They will work hard.  They will be one of your best employees.

I hope that someday the need for a month devoted to motivating employers and making them aware of the ways of hiring someone with a disability could be an asset to their company, will be a thing of the past. That we'll all be looked on as equals and be hired because we're the best person for the job.

I GOTTA KEEP ROLLIN'

I began using a power chair in high school.   My eighth-grade teacher was disabled and a former student of my school.  She used a power chair for a while. When she didn't need it anymore she left it at the school. I was fortunate to be the one who was given the opportunity to use it at school. The freedom it gave was indescribable.

In my senior year in high school, my mom and I began looking into getting me my own power chair. I remember when they brought one to school for me to try out.  It was a chair from England.  I had that chair for many years. I had very few problems with it. When I needed a new chair the chair from England was not available in the U.S. anymore.  I guess it was too costly to bring to the States.

Shopping for power wheelchairs used to be like shopping for a new car. You were given the opportunity to see and try out a variety of different chairs and choose the one that best suited your needs, it is not that easy today.  

Today there are no more wheelchair showrooms. You are shown pictures instead of the actual wheelchair.  Your need must be verified by your physician   If you want a new chair the vendor selling the chair must prove to your insurance company that there is a medical need for the chair you want. A twelve-page form must be filled out and a physical therapist must come out to your home to assess your needs. If it's proven that the chair you want does not fulfill a medical need, you will be denied the chair you requested.  You may be sold a chair that is more cost-efficient for Medicare/Medicaid. 

I have had the same power chair since nineteen ninety-nine.  It's nothing fancy. In fact, I have been told that the design is a manual chair with batteries and motors attached. I like the chair because it is not that big and heavy.  It works well in my house. I desperately want a new chair, but I want the same model or as close to what I'm using now as possible. 

The manufacture of the chair I want is in a decent decree with the FDA. The manufacturer failed to follow the proper rules and regulations as set forth by the FDA.  While the FDA reached an agreement with the manufacturer in December 2012, vendors are still not allowed to sell the chair I want because (from what I gathered from my research) the manufacturer has not passed audits and inspections subject to the approval of the United States District Court of Ohio.

I keep being put off.  First, I was told everything would be settled in June, then September and now I was told, hopefully, January. I don't really care what rules and regulations were broken by the manufacturer. I care that because they are not fixing their issues in a timely manner, I, along with many other disabled people, cannot get the chair we want.  Because my chair is old, the motors could stop working and at any time.  I pray that it doesn't happen before I can get a replacement chair.

Those who make the rules at Medicare and Medicaid, as well as those who manufacture wheelchairs, don't spend eighteen hours a day in them. Give more control back to the consumer. Think about what's best for the person,, not just what's cost-effective. I was told couldn't get a softer cushion because I don't have any skin breakdown. Rather than letting me have a softer cushion, to prevent me from getting pressure sores, my insurance company will only allow me to have a different cushion if I have a problem. What sense does that make?

Insurance companies should be concerned with the comfort and well-being of individuals using wheelchairs, not just what's in their best interest.  





  

WE STILL HAVE A LONG WAY TO GO

It was a beautiful day.  The sky was blue and the temperature was in the seventies with a light breeze.  A 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, 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.

THE MISS AMAZING PAGEANT

This video was featured on The Today Show.  http://www.today.com/news/miss-amazing-pageant-puts-girls-disabilities-first-8C11101506  It made me cry.  I saw young girls and women 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 the 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.

http://missamazingpageant.com/about/

MY ROAD TO (PART TIME) EMPLOYMENT

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.  

My first internship was at a local children's hospital.  My boss took me on in the hopes of getting me a job as the social worker for Shriners Hospital.

In the 1980s the children's hospital was providing a social worker for Shriners. I met with 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 assess 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 for two years after graduation.  I sent out resumes and took the state tests but 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 interviewer asked me what I would do if one of the girls turned my chair over, I had no answer  The interview ended.  

I have shared in a previous post how I got my job at Meramec. An instructor gave up his lunch hour to teach me and other young women 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. I retired in 2005 

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 phone conversation.   She did not afford me the opportunity to meet with her in person.

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.