A WAKE-UP CALL

There is an issue facing our county that is of great concern to me. That issue is the future of health care for the disabled. Medicaid.

While I'm not on Medicaid the majority of disabled people I know are.  Services should not be cut. all states should provide funding for Medicaid. 

I was watching the news last week when I noticed the crawl at the bottom of the screen.   If I read it correctly,  it said that the state of Missouri would begin considering putting disabled individuals into managed care facilities in 2013.  I'm assuming this means people with chronic or pre-existing conditions. 

Disabled people deserve good health care choices. They should not be penalized for not being able to work a full-time job.  And, they most definitely should not be warehoused in managed care facilities just to cut costs.

 Lawmakers forget that the disabled community is a community of people who deserve the same rights as everyone else.  The United States is always ready to help other countries.  Yet, lawmakers would consider cutting or changing services to the disabled citizens of their own country.  It just doesn't seem right or fair to me.

I went to a state agency several months ago and asked if I could get a little assistance from them in paying a portion of my monthly home care bill. I was told to get any help from them at all I'd have to be totally on Medicaid.  I have always tried to be a productive member of society. I can understand why a lot of disabled people don't work.  They are afraid of losing their government assistance. 

Having a disability is enough of a challenge.  Disabled people deserve to have a good quality of life.  They shouldn't have to worry about changes or cuts to their services.  Before lawmakers make cuts or changes to services for the disabled they need to stop for a moment and remember, "There But For The Grace Of God Go I." 

HOME IS WHERE MY HEART IS

People's houses are made of bricks, mortar, plaster, wood, and paint.  Four walls and a roof.   A place to live.  I have lived in the same house all of my life. My house is much more to me than that.

Behind a door in my family room, you'll see where my mom measured how tall my brothers and I were.  Our height is written in pencil with the year on the wall.   I remember being supported against the wall while my height was recorded.  Numbers and initials that wouldn't mean anything to anyone else, but they mean something to me. I find comfort in knowing they are there.

Thanksgiving was a joint effort between my mother and grandmother.  (Really all holidays were a joint effort between them.)  It meant getting out the big Nesco cooker to cook the bird in.  One year, the turkey was so big, the lid had to be tied down.

If I close my eyes I  see the living room decorated and the big Christmas tree in front of the picture window. I remember the year my dad got one of those silver trees with the rotating color wheel. My dad thought it looked great.  My older brothers were horrified.  Christmas Eve, they brought home the discarded tree from the neighborhood school.  It was HUGE and seemed to cover half of our family room because it came out so far, but we had a green tree that year. It was great!!  

Easter meant Mom's lamb cake.  It was a two-day process.  On the first day, she baked them in a cast iron mold that was given to my grandfather and was almost as old as my mother.  The second day she iced and decorated them. 

My last birthday party was given to me when I was ten. My cake had a ballerina figurine on top. My mom got a clown to entertain me and the other children. (I never liked clowns but this one was okay.)

My mom considered moving when I graduated from high school. She just made the house more accessible for me.

I close my eyes and I see everything.  The memories comfort me and bring me peace.  Living in the house I grew up in has allowed me to be able to function and build a life for myself since my mother's death two and a half years ago.  I don't know if I would have made it.  I know nothing lasts forever, but I do know wherever I go in the future,  The house that I grew up in will always be home to me.

PUSH GIRLS

Sundance Channel's new reality show, Push Girls, follows the lives of Tiphany, Auti, Mia, Angela, and Chelsie. Five women who don't let the fact that they are paralyzed and in wheelchairs stop them from doing anything they want to do.

After five minutes of watching the show, you realize that their chairs are just an accessory, much like earrings or a purse. (Okay, maybe that's a bad analogy, but you get the idea.) Their chairs do not define who they are. They are five women who face life's challenges with a positive attitude. The girls can do just about anything, they may just do it a little differently.

I cheered when Auti won first place in a ballroom dance contest competition. It was my favorite episode featuring Auti. It was so cool that she competed against able-bodied dancers and won! She had been a professional dancer before her accident. Auti taught herself how to do hip-hip dance moves in her chair and created a wheelchair hip-hop dance team called Colors 'n' Motion. The group puts on shows to raise awareness and show what people with disabilities can do. She had a role in the independent film, Musical Chairs, and is working on a CD. She calls herself a diva because she likes to take charge but, in my opinion, Auti is a diva with a heart of gold.

Unlike the other girls, who became paralyzed in car accidents, Mia became paralyzed when a blood vessel ruptured in her spinal cord. Before she became paralyzed Mia was a competitive swimmer. . My favorite Mia moment was watching her compete in a swim meet. Watching Mia achieve her goal of competing again was so thrilling. I was on Team Mia, shouting "Go Mia" as I watched. It didn't matter what place she finished in, what mattered is that she did it. Mia also went kayaking on a date. She was and is fearless. I cannot wait to see what sport Mia conquers next!

Tiphany attended her high school reunion which happened to take place on the same day as the anniversary of her accident. I think it took tremendous strength and courage for Tiphany to return to her high school and face her classmates. Then she had the courage to drive by the site of her accident and have all the feelings and emotions connected with that day come to the surface again. It was something she knew she had to do so she could move forward with her life. It was very emotional for Tiphany and her dad. I cried with them. I applaud Tiphany for allowing cameras to film such personal scenes.

Since her accident, Chelsie speaks at school assemblies about the dangers of drinking and driving. She has been interviewed by Seventeen Magazine. Chelsie also loves to dance. She would like to attend college and study communications and business. Her accident happened just over two years ago and the girls offer her support and friendship as she learns to deal with the challenges of her new life. My favorite episode featuring Chelsie was when the girls went high heel shopping with her. Just because you're in a chair doesn't mean you can't still be fun, sexy and feminine. Whatever Chelsie does, I know she has a bright future ahead of her.

Angela had a lucrative career in modeling before her accident. Her dream was to return to modeling. There aren't many calls for models in wheelchairs. One agency Angela called told her she could come in. When asked if they were accessible they told her the agency was accessible. The agency's idea of accessibility included a staircase. Angela didn't give up. Her tenacity paid off. On the season finale, Angela flew to New York to do a photo shoot for a national campaign for Nordstrom Department Stores. Angela's success is a perfect example of why you should never give up. With determination, you can achieve your dreams.

It took me a long time to finish this blog. Everything I wanted to say sounded cheesy. I wanted to say more than I love Push Girls and everyone should watch the show. I love it because the girls support each other. They are there for each in good times and bad. Push Girls shows that disabled people want the same things that everyone wants. To be accepted, to be loved and to be thought of as people first and disabled second. As the girls say, "If you can't stand up, stand out."

Thank you, Tiphany, Auti, Angela, Mia and Chelsie for letting us into your lives. Season one was awesome. I can't wait for season two.

www.sundancechannel.com/pushgirls

HAPPY BIRTHDAY ADA

The Americans With Disabilities Act became law on July 26, 1990. The purpose of the law is to ensure that the disabled live in a society that is accessible to them. 

The ADA covers employment, accessibility of state and local government buildings, any restaurant or store as well as public and private transportation services. The law ensures that anywhere telephone services are given to the public, telephone relay services are given to anyone who is hearing impaired. In short, anything that is available to the able-bodied should be made available to those with a disability as well. No one with a disability should be discriminated against for trying to have their rights upheld.

The law has come a long way, but still has a long way to go, particularly in terms of architecture and quality transportation services. Last year, I went to a restaurant that had steps to get to the front door. The restaurant staff offered to pick me up in my motorized wheelchair and carry me up the steps to the inside. I declined their offer. My chair is heavy and I didn't want anyone getting hurt. There are many people with chairs larger than mine. Carrying a chair up steps can be difficult for those offering assistance and scary for the person in the chair. The restaurant staff then directed us to an entrance where I assume deliveries are made. I had to drive down a steep ramp and then go through the restaurant kitchen. When I was little going through a restaurant kitchen to get to the dining area was a common occurrence for me, but in 2011, I never dreamed I'd still have to go through a kitchen. When we left, I did let the restaurant staff carry me down the front entrance steps. because the ramp for the delivery entrance scared me and I felt being carried down the steps would be quicker and safer.

Earlier this year I wanted to have little chocolate teddy bears made as I was having a book signing. Since my children's book, The Busy World of Bianca Bear, is about the adventures of a little pink bear I thought it would be nice to have chocolate teddy bears on my signing table for anyone who stopped by. I called a candy store near my house and they told me they had teddy bears and I should come in and look at their selection. I wanted to stop in, but when we went by, the building was not accessible. I don't even think there was a curb cut and I know there was a step to get in. I called to complain and was given a voicemail. I left a message explaining my situation along with my contact information. I never heard from them. I was very disappointed that the store. didn't care enough to return my call and address my concerns.

I am fortunate enough to have an accessible van and caregivers to drive me where I need to go. Most disabled people are not so lucky. They must depend on public transportation, buses, and Call-A-Ride. I have been told the lifts on buses are always broken. I have also heard horror stories concerning Call-A-Ride. They can be either fifteen minutes early or fifteen minutes late in picking a passenger up. A rider must be outside and waiting no matter what the weather. Call-A-Ride maybe an hour or two late and it may be raining, but a rider must be outside waiting for the van otherwise the van will leave them. The rider will get a warning letter. If they are late again they will be suspended for some time. If a rider misses a van, it may be several hours before another van is available to pick them up. I know of someone who didn't make it to their doctor's appointment because Call-A-Ride was late picking them up. By the time they arrived at the doctor's office, the office was closed. Call-A-Ride left the person outside and it was getting dark. Thankfully, another van picked them up in a few minutes. A rider may have to transfer several times before reaching their destination. Again, they must wait outside, no matter what the weather, for the next van or the van will leave. My friend was hurt due to an inexperienced driver who didn't secure their chair in the van properly. Call-A-Ride paid their medical expenses.

Disabled people deserve safe, dependable transportation. There are a few accessible .taxis now, but they can be expensive. Every building needs to have a safely accessible entrance. I realize money is tight and budgets are being cut, but something needs to be done so that disabled people can continue to lead independent and productive lives.

BULLIES CAN HAVE A DISABILITY.

If you think kids with disabilities do not bully their disabled peers. You are wrong. If you think kids with disabilities are accepting and understanding of their disabled peers. Think again. Bullying is not just an abled-bodied kids' problem. Bullying does not discriminate. Kids with disabilities can be bullies too.

I attended a public school for the physically disabled from 1963 to 1976.  Every child who went to the school had a disability You'd have expected that the children would support each other. They would have compassion for one another because they understood what it was like to be disabled.   I am sorry to tell you that was not true. 

I startle very easily.  Any loud noise can cause me to jump.  Children intentionally drop books on the floor to see me jump and laugh hysterically. It was the funniest thing they had ever seen.  Some adults took great pleasure in making me jump as well. 

I was not boy crazy  I was wrapped up in the celebrities I saw on T.V.  I was made fun of. I was called names. I was laughed at by the other white girls in school. Had it not been for a compassionate bus driver who stood up for me when he witnessed me being made fun of. Had it not been for the friendship of several African American girls who accepted me for the person I was high school would have been a very lonely time for me.

I have a friend I have known all of my life.  We share the same disability.  We were very close when we were young.  My friend was allowed to attend a regular school long before mainstreaming became the norm.   During our teenage years, my friend began to distance herself from me, She chose her able-bodied friends over me. She was embarrassed by me.  I was the one who was disabled I used a power chair. My friend walked with crutches. My friend did not attend a "special" school. In her mind, my friend did not have a disability.

My advice to any young person who is being bullied is to find someone who accepts and supports you for the person you are.  You are unique.  Celebrate that. Be proud. 

Take it from me uniqueness or dare I say weirdness, is cool.   No one has the right to make another person feel inferior. You matter. 

To a child who bullies someone because they are different here is something to consider.  The way you treat people will come back to you positively or negatively.  Treat everyone with respect and dignity Be a friend to the new kid. Be a friend to the kid everyone in your class thinks is weird. Don't be a bully. Don't be a follower Set a good example. Be a leader.

Be kind. Be accepting. Be respectful. You'll feel so much better. 

I SOLEMNLY SWEAR...

I had to go to court last week.  The specifics of the case are not important.  However, the lesson I learned from the experience is. I learned that some people have no respect for the judicial process.  When some people stand before a judge, raise their right hand and swear to tell the truth, it means nothing to them.

I took going to court very seriously.  It's not something I thought I'd ever had to do.  It was very intimidating.  The courtroom looked similar to ones I'd see on T.V.  For a minute I thought, it wasn't real, but then my name was called and I knew it was. 

The judge listened to both sides and I won my case.  All I kept asking myself was, "How could the other person involved in the case not have told the truth?"  I won.  I should have been happy. It should not have mattered to me that they lied to try and prove their case, but it did. 

I have been told people lie every day.  That's sad.  What kind of message does that send to children?  Tell the truth, but if you are in some kind of trouble that might have serious consequences for you, it's okay to lie.  Say anything you have to that will prove your case and get you out of trouble.  Even if it means breaking an oath in court. 

I hope the message we want to convey to children is to always tell the truth and admit when you have done something wrong.  The consequences will be far less if you do.

I know some of you are reading this and thinking about how naive I am.  You are wondering why I would waste an entire post writing about how some people lie to keep themselves out of trouble.  I wrote this because it was important for me to share my feelings.  Thanks for indulging me.

The issue is that of respect.  Respect for yourself and others.  If you lie you have no self-respect.  And without self-respect you have nothing.

DANCING QUEEN

June 1, 2012, was a day to remember.  It was the day my nephew Tony married, Liz, the woman of his dreams.  It was the day two awesome people joined my family.  Liz and her daughter Hannah.

They say that her wedding day is the one day in a woman's life when she feels like Cinderella.  Liz truly looked the part in her beautiful gown and Tony looked so handsome in his tux.  When they were pronounced husband and wife. I was so happy.   I was glad I got to be there to share in their joy.

I enjoyed catching up with out-of-town family members, I enjoyed the delicious meal that was served, I enjoyed listening to all the toasts and speeches that were made in honor of the bride and groom and I also enjoyed dancing.  No, that's not a typo.  I said dancing.

Tony and Liz came over to talk to me.  We took a picture together.  Then Liz said, "Tony, don't you think we should get Joanne out on the dance floor?" 

I'm sure every person in a wheelchair has chair danced at one time or another.  The last time I had done it was at my high school prom in 1976.  At my prom, it didn't matter how I looked dancing because everyone there was disabled.  No one cared if you looked stupid.

Tony asked me if it was okay to take me out on the dance floor.  I was nervous. "I guess so," I said.   We were waiting for the DJ to play a good song for us to dance to when Proud Mary came on.  "Oh, Joanne, this is the perfect song for you because it's ROLLIN'."

They each took turns controlling the joystick of my chair.  I was spinning and moving back and forth in time to the music.  I was laughing so hard.    We sure hadn't danced like this in 1976! It felt great! I was really dancing.  People tell me all the time that my chair is old and doesn't move very fast.  It certainly was moving and spinning fast that night.  I got a little dizzy.  It was most likely caused by the spinning, the excitement, the rum and coke I'd had, or a combination of all three.  Whatever the reason, I wouldn't have stopped for anything.  We danced the entire song.  I was a little sad when it ended.

I have been to countless weddings in my life.  At the receptions, I was always a spectator, never a participant.  This time I got to participate, to be included, to be just like everyone else.

Thank you, Tony and Liz, for giving me a memory that will last a lifetime.