Monday, December 31, 2012

LUCKY 2013

A new year is almost here.    Time to reflect on 2012 and look ahead to 2013.  

At the end of 2011, I had finished the ten week training session at the independent living center and was looking forward to being considered for part time employment with them, after completing a six month volunteer period. Sadly, things did not turn out as I had hoped.  I view the year I spent there as a learning experience.  I am happy I had the opportunity.

I'm still a greeter at my library, a volunteer job I began in the summer of 2010.  I am now volunteering there three days a week and ( as of December 2012) I have logged the most hours of any volunteer there.

I had several book signings in 2012.  The most memorable one  was at a cafe where I had the opportunity to meet the editor of the Ballwin-Ellisville Patch, an online newspaper.  This blog is now part of the Local Voices section of that online paper.  I feel honored because, while I don't live in the area covered by the paper, the editor felt my blog was unique and important enough to be part of the paper. 

Any disabled person who relies on caregivers has struggles from time to time.  It's a fact of life.  While I have had difficult times in 2012, I got through them and continue to live independently, 

My main goal for 2013 is to become a freelance writer.  I am making small steps toward that goal.  I'll continue to try to do book signings whenever possible, as well as my blog and anything else I can to reach my goal of freelancing.

I want to continue to live independently.  I appreciate the assistance of my family and caregivers.  Their help is invaluable to me.

Whatever your goals are for 2013, the important thing is not to give up.  Believe in yourself.  If there is something you have always wanted to do, do it.  Don't listen to other people who may tell you your goal is unattainable.  Don't let others crush your spirit.  Even if you don't achieve your goal, you can still feel good about yourself because you know you tried.  If you give up without trying to reach your goals, you might miss out on some really great experiences.  I have probably said these things in previous posts, but as a new year begins, I thought they were worth repeating.

I don't have a lot of new goals.  In 2013,  I'll keep living my life the best I can. I'll continue to write. volunteer my time and try to help other people any way I can.

What are your goals for 2013?   Have you thought about how you can achieve them?  If a goal seems overwhelming, break it down into small steps.  Take your time.  Do things at your own pace.

The title of this blog is Lucky 2013.  That doesn't mean that I think goals are achieved through luck.  It means that if you set a goal in 2013, work hard and reach it, think how lucky you'll be to have had the experience.

HAPPY NEW YEAR EVERYONE!












Monday, December 17, 2012

WE ARE FAMILY

After the tragic massacre that occurred at Sandy Hook Elementary School, I didn't think it was appropriate to just write a Christmas post as if nothing had happened.  Twenty-six people died because a crazed individual went on a shooting rampage.  Twenty children won't be with their families for Christmas. 

 I want to share my thoughts. 

Everyone is busy.  So busy that sometimes we take the people that mean the most to us for granted because we assume they will always be there.  Then, we see a tragedy like the one in Newtown, Connecticut, and we realize just how fragile and precious life is.

I think we have lost sight of the fact that we are all one big family,  As a country we need to support each other.  If you see someone struggling or in pain, lend a hand or show that you care by listening if someone needs to talk.  It could make all the difference in a person's life. 

I used to ride to the store in my power chair to pick up a few groceries for my mom.  One day the wheel of my chair got stuck in a grate in an alley.  Two women came by.  I asked them if they would go and get help for me.  "Oh no, we can't get involved," they told me and walked on.  Thankfully. a few minutes later, someone did come and help me. We need to help one another whenever we can.

Families need to sit down and talk to each other more.  Turn off the cell phones, put down the Ipads and video game controllers and talk about your day so that you know what is going on in each others lives. Stop texting and start, talking. Looking at your phone when someone is speaking is rude.  It sends the message that your phone is more important than the person who is speaking.  Be connected to each other, not just your phone or the Internet.

I think we need to turn to God in prayer more.

What I've said is nothing new.  Some of you may even find it corny.   I hope not.  I hope it starts you thinking of ways you might help or offer support to another person.   We will all need each others help and support as we struggle to deal with this terrible tragedy.

Tell the important people in your life you love them.  Hug your children and make sure they know you love them and how special they are to you. 

This Christmas Season, my thoughts and prayers go out to the people of Newtown, Connecticut. Especially to the parents who lost their children.   I pray that someday we will finally have "Peace on Earth and Good Will to Men."













Thursday, December 6, 2012

A DAY TO CELEBRATE

Monday December 3, 2012 was the International Day  of Persons With Disabilities.  It was a global event sponsored by the United Nations.  http://www.un.org/disabilities/default.asp?id=1597 

 If 15% of the people in the world live with  some kind of disability and the disabled population is the largest minority group, why wasn't more done to create awareness about the day?

Sure, there was a program at the United Nations, and a proclamation by President Obama,  but  wouldn't it have been cool to see how people in the United States and countries around the world observed the day?  Wouldn't it have been fun to see it trending on Yahoo or Twitter?  I am disabled, and had it not been for a posting on Facebook last Sunday night, I would not have known about the day at all.

The purpose of the day was to raise awareness of the barriers the disabled community around the world still face, to discuss ways the barriers can be removed and to highlight contributions made by disabled people in society  We do not yet live in a totally inclusive and accessible world. I'm not sure we ever will.  For that to happen, every one's mind set needs to change.  People need to see the person,  not the disability. And,let's face it, there will always be people in the world who will look at a disabled person and only see their disability.  It's sad, but true.   

There were celebrations all over the world.  Why weren't they live streamed over the Internet or shown on the news?  Why did I have to learn about such an important day via a Facebok posting?

My hope is that someday all barriers will be a thing of the past and everyone will be thought of as equals.  That disabled people will live a world that is totally accessible and includes them in all aspects of life.  That we live in a world that always treats disabled  people with respect and dignity.   That we live in a world where disabled people always have a voice and don't have to fight to be heard.  I hope that a child born today will be accustomed to seeing disabled people in their community, 

My dream is that someday there will be no need for an International Day of Persons With  Disabilities because all the barriers,  that now prevent disabled people from the equality they deserve, have been removed. Eyes have been  opened and views have changed.  If we all work together maybe, just maybe, my dream will become a reality after all.




Thursday, November 29, 2012

OH NO, I HAVE WRITER'S BLOCK

I have been writing this blog since July.  I always knew the day would come.  The day when I can't think of anything to write about.  That day is today. 

I am sitting in front of my laptop, my typing finger poised over the keyboard, ready to strike a letter  and... nothing.  I'm panicking.  I have to come up with something intelligent to say.  I can't miss a week because then,  I will get out of the habit of blogging and it will  be difficult to start again.  What am I going to write?  Then, an idea came to me.

I remember being in first grade.  Every morning the teacher would print our names on the chalkboard and we were all supposed to print our name underneath.  My classmates were able to print their names almost perfectly. I couldn't.  My attempts  to print my name looked like chicken scratches.    I knew what the teacher wanted, but my brain could not get my hand to cooperate. It was humiliating to have to try, and fail, every day while the other children were successful/

Apparently, the teacher didn't realize how hard I was trying to print my name like everyone else.  She did nothing to encourage me.  To be honest, I think she was a little disgusted by the fact that I couldn't print my name. 

This morning ritual went on for months until, one day, I did it.  I printed my name on a workbook.  The teacher saw what I had done. There were no words of praise to acknowledge what a struggle learning to print my name had been for me.  Her response was,  "Well, was that so hard?"  I couldn't tell her then, so I'll tell her  now and hope that, wherever her spirit is, she hears me. Yes, Miss Gifford, it was.

In second grade I learned to use an electric typewriter.  I didn't have to worry if I could write or not. My  "Writer's Block" was gone.  I could express myself and complete my classwork like everyone else. 

I remember being chosen to have my picture in the School and Home Newspaper,  using my electric typewriter.  Quite an honor for a seven-year-old. The photographer and physical therapist came to my classroom.   I was supposed to type as if no one was watching me.  The photographer snapped the picture.  The physical therapist got angry because I'd hit the wrong key. (This woman wore her hair in a bun all year, but took it down once a year  to be a witch in the school's Halloween parade. The day of the photo, I think the witch appeared a little early.)  Why couldn't she have been happy that my picture would be  published and that I'd be representing the school?

I know the teachers in the sixties did the best they could, but sometimes,  I still wonder where the compassion and understanding was.  It may take a disabled child a little longer to complete a task.  They may complete the task in a little different way, but they'll  get it done.  All they need is a little encouragement, understanding and love.






   






Tuesday, November 20, 2012

SO MUCH TO BE THANKFUL FOR

I have so many blessings in my life.   Through the year, I forget to stop and  give thanks for how fortunate I am.  Thanksgiving is almost here, so I want to take this opportunity to take a minute to count my blessings. 

I am thankful to God.  I believe each day is a gift from Him.

I am thankful that I'm still living in the house I grew up in and have caregivers to assist me.  Living in the house has made it easier for me to cope with the loss of my mother.  I'm thankful for my family.  They support me, even when they don't agree with my choices.  Without the assistance of my brother, Bob, I know things would be a lot more difficult for me.  I  am thankful for my Maltese, Lucie.  As I said in a previous post, she is truly a doggie diva, but I wouldn't trade her for anything.

I am thankful for my neighbors.  They watch out for Lucie and me and help us whenever they can.

I am thankful that I have an accessible van.  I don't have to depend on public transportation the way the majority of disabled people do.  I know how lucky am.  I never take my van, and the freedom it gives me, for granted.

i am thankful for the time I spent at the independent living center.  While the job may not have worked out, it was still a learning experience.  I learned that every job doesn't always run the same way.  Jobs, like people, are different and you have to be able to adapt and go with the flow.  I am thankful for my volunteer job at my library.  I get to be around books and work with great people.  What more could l ask for?

I am thankful for Facebook.  Social media has allowed me to reconnect with friends, make new friends, join writer's groups and share information. (Oh yeah, the games are a lot of fun too.)

And finally, I am thankful  for anyone who reads this blog.  It makes me feel good to know that you take time out of your day to read my blog. That you think what I have to say is worth reading.  I appreciate your comments.  I don't pretend to know everything and I think we can learn from each other.

Whether you're counting the number of touchdowns your team scores in the game this Thanksgiving, or counting how many pieces of pumpkin pie you've had, don't forget to count your blessings too.







                                                                                      

Monday, November 12, 2012

INCLUSION IS A BEAUTIFUL THING

Believe it or not, there are still people in the world, who think that disabled children should not be mainstreamed.  They think that having disabled children in class, with their able-bodied peers, is a distraction.  That teaching a disabled child takes too much of a teacher's time.   Time that should be spent teaching an able-bodied child. 

What about what a disabled child can add to the classroom? Children can learn compassion, acceptance and the importance of helping one another when a child with a disability attends class with them.  If children have a disabled child in class with them, they will grow up with the awareness that a person with a disability is just like they are. 

l loved being a Brownie/Girl Scout.   The experience was one of the happiest times of my childhood.  The Brownie  troop leader was a member of my church.  The week before I attended my first meeting, the troop leader talked to the girls about me.  I don't know what she told them,  all I know is they accepted me and always found a way for me to be a part of whatever they were doing.  The girls didn't see my disability.  They just accepted me as their friend. 

I'm sure you have heard about the high school student, with Down's Syndrome, who was  voted homecoming queen by her classmates this year.    The fact that able-bodied students elected a young woman with a disability to be homecoming queen is awesome!  The students voted for her not because she was disabled, but because of the kind of person she  is. The students saw a person first, not her disability.  I hope we see more acts like this in the future. 

As I mentioned in a previous post, I attended a public school for the physically disabled for thirteen years.  I would have given anything had mainstreaming been an option back then.  Had I been mainstreamed,  I would have developed better social skills.  My grade school education was adequate,  My high school education left me unprepared for college.  After my freshman year, the high school teacher left.  The teacher who taught Spanish, Shakespeare and for whom writing a term paper was a requirement to graduate,  was replaced by teachers who only taught the basics. They did nothing to prepare anyone for college.  I understand why.  When you have students at all different levels of intellectual ability together, it would be difficult to meet all of their  needs effectively.  I missed out on a lot, not only socially, but academically as well. The only positive thing about my high school years was that, in my senior year, I was able to take two courses at a community college in preparation for college that fall.


I often wonder what my educational experience would have been like if I had been given the opportunity to be mainstreamed.  Would being mainstreamed have made me a different person?  I'll never know how it might have changed me.

For anyone who thinks a child with a disability is a distraction in the classroom and should not be mainstreamed, remember the qualities I spoke about earlier.  Aren't those qualities we want all children  to have?  If you think about what an able-bodied child can learn from a disabled child, they are not a distraction in the classroom at all.  They will only enhance another child's educational experience.






Thursday, November 1, 2012

DO WHAT YOU SAY AND SAY WHAT YOU MEAN

I'm not a quitter.  At least I wasn't, until last week, when I quit my volunteer job at an independent living center. 

A little over a year ago, on the advice of a counselor from vocational rehabilitation, I contacted the center in search of a part time job.  I was informed that there was a program that started off as a volunteer position, but  if I did a good job, at the end of six months, I would  be considered for a part time paid position with the center.  The position was similar to that of a mentor to other disabled individuals.  I felt it would be a good job for me as I would be able to use some of my skills as a social worker when offering support and encouragement to others.  I would work hard to prove myself.  I was determined to become a paid employee.

I came from a work environment where I did my work on my own. I was responsible for learning software, teaching my classes and if I was sick, I either had to find someone to teach the class in my place or make up the class at a later time.  If I was learning new software, and had a question, I asked for help.  In the program I was in, at the independent living center, there is a lot of hand holding.  People call to remind you when paperwork is due and when to attend meetings. It seemed  to me that sometimes one person didn't know what the other was doing.    I wasn't used to that and it was very difficult for me to adjust to.  In my opinion, if someone has to remind you of your duties, you are not really doing things on your own. It goes back to what I've said before, if we as disabled people say we are like everyone else, we should be able to do our job on our own just like everyone else.

I completed my six month volunteer period.  I was told my work was "meticulous."  My interview and position appointment kept being put off.  Each time I wanted to quit, I'd call my boss, he'd address my concerns saying someone would call me concerning my paid positioon and I'd agree to stay.  I was given more responsibility, but the call for a paid position never came.  Since I was still a volunteer well after the required six months were up, I stopped going to meetings because I felt my time was my own as a volunteer.  When I mentioned my six months being up I was told they say six months, but it could be longer.   I couldn't deal with being put off anymore.

From the beginning I was clear about what I wanted, part time paid employment. I feel bad about the way things turned out. The center does great things for disabled people and I was excited to work for them.  I know I did the best I could and it's time for me to move on, but a part of me will always wish things had turned out differently







Thursday, October 25, 2012

THERE BUT FOR THE GRACE OF GOD

I'm not political at all.  I'm more pop culture than political.  There is an issue though that is a concern to me and has me upset enough to blog about it.  That issue is the future of health care, in this country,  for the disabled. Medicaid.

While I'm not on Medicaid, the majority of disabled people I know are.  Services should not be cut and all states should want to participate in the funding of 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. 

I'm not going to give you a lot  of boring statistics.  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.

I love my country , but I think sometimes lawmakers forget that the disabled are 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.

My home care is costly.  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. could have no funds at all.    I have always tried to be a productive member of society, but I can understand why a lot of disabled people don't work.  It's because they are afraid of losing their assistance.They have no real incentive to work.

I just wrote from my heart.  It seems to me the answer is clear.  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 should stop for a moment and remember, "There But For The Grace Of God Go I."











Tuesday, October 16, 2012

HOME IS WHERE MY HEART IS

I suppose most people think of their house as bricks, mortar, plaster, wood and paint.  Four walls and a roof.   A place to live.  That's it.  I have lived  in the same house all of my life and my house means so much more to me than that.  It means home.

If you look 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 and 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.

Christmas is different now.  If I close my eyes I  see the living room all 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 my mom's Easter lamb cake.  It was a two day process.  One day to bake 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 years old.  My cake had a ballerina figurine on it and my mom got a clown to entertain me and the other children. (never liked clowns, but this one was okay.)

My mom thought about moving when I graduated from high school.  Instead 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 mothe's death two and a half years ago.  If I hadn't stayed in my house,  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 i grew up in will always be home to me.
























Thursday, October 4, 2012

JUST LIKE EVERYONE ELSE

I hear disabled people say they want to be treated just like everyone else.  Sometimes I wonder if they really mean it.

I went to undergraduate and graduate school and found employment before the Americans With Disabilities Act was passed..  I think it has made me a stronger  and more resourceful person.  I was not provided with people to take notes for me. When I started college,  I would take a tape recorder to class and tape the lectures. I'd  playback the tapes when I got home and type out my notes.  Later, I discovered  note paper with carbon paper attached.  This made my life much easier. It helped me to make friends too because I'd have to ask someone to share their notes with me. Automatic doors were virtually nonexistent and elevator buttons were well beyond my reach.  Again, I viewed this as just another way to meet people.  Although, in the winter, sometimes I thought I'd freeze to death waiting for someone to open a door for me

Graduate school was a nightmare.   They made minimal accommodations for me. The advisor I had my first semester told me he'd rather see me fail than help me.  The second year I couldn't get to the student center because construction work was being done. Between classes, I studied in an office used by part time faculty.  While my friends would stop by, I was still very isolated and alone.  My last semester,  I found out about four courses that  I needed to take in order to graduate.  My first advisor failed to tell me about these courses.  I had to take the four most difficult courses in one semester.  Had it not been for the unwavering support  and encouragement of my mother I would have dropped out.

I have written in a previous post how I created a part time teaching job for myself at  a community college. I began by volunteering in the computer lab.  I saw that older adults were feeling lost and overwhelmed trying to understand computer software.  With the support of the staff in the lab, as well as other faculty, I created a teaching position  for myself.  I saw a need and I filled it.

I'm kind of glad the ADA didn't exist when I was in school or when I  was trying to find employment. I think having to do things myself gave me a strong work ethic.   Sometimes I think the ADA has made it too easy for disabled people.  I get the feeling some disabled people think that because they are disabled, they don't have to work as hard.  That mistakes are okay.  People will forgive their mistakes because they are disabled.  If we,  as disabled people, want to be treated just like everyone else, we have to work hard.   Our work has to be as good or better than everyone else's.  When given a job to do,whether it's in school, doing volunteer work  or paid employment, we need to take the job seriously and complete tasks to the best of our ability, not halfway. If we do, we'll feel good about ourselves and we'll send a positive message to our community. 











Thursday, September 27, 2012

I GET BY WITH A LITTLE HELP

Caregivers are a fact of life for me.  I couldn't do anything without them.  They allow me to live in my own home and lead a productive life.  Had it not been for caregivers my mom  would not have been able to die at home.  For me to say negative things about caregivers and home care agencies would not be productive.  I appreciate all my caregivers and what they do for me and Lucie.  That being said,  I do think there are ways home care could be improved.

There are probably a myriad of reasons why people choose to work in home care. I  have been told that the reason people work in home care is because of the flexibility of schedules.  If a caregiver  needs to take off, it is easy for them to do so. The agency will work around a caregivers schedule.  Rarely,when I ask caregivers, do they say it's because they want to help people. It has been my experience, sometimes, that caregivers are more concerned with money than clients.  I understand, especially in this economy, that everyone needs money, but as a client, I like to think that my caregivers care about me and I'm more than just a job to them.  I know money is important, but so is compassion.

Caregivers should be given detailed background on their client.  I cannot begin to count the number of times caregivers have come to work for me stating they have had no experience working with someone who uses a power chair and has Cerebral Palsy.Or they were told I used a wheelchair, but weren't told that I couldn't transfer myself.  The more information given,  the easier it is for the caregiver to do their job.  

It would also be ideal if caregivers and clients could meet before a caregiver begins working for a client so that they could become acquainted with each other.  If you have more than one caregiver, as I do, or if it's an emergency situation, that's not possible.
 
Agencies should allow clients to evaluate caregivers.  This would let the agency know how the caregiver is doing and if the caregiver is a good match for the client they are working with. Also, agencies need to monitor a client and caregiver by sending someone out to a client's home from time to time so they can see conditions in a client's home and see if things are running smoothly to avoid any problems. I know this is done sometimes for clients on Medicaid, but to my knowledge, it is not done for private duty clients.

Caregivers are often overworked and underpaid. It's my responsibility as a client to let my caregivers know how much I appreciate what they do for me.  It's the caregivers resposibility to help their client as much as they can.  There should always be a mutual respect between clients and caregivers. if they have respect for one another, then both the client and caregiver will have a positive experience.







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Wednesday, September 19, 2012

DON'T JUDGE A BOOK BY IT'S COVER

I''ll never forget the first time I realized I was thought of as "severely disabled." My mom and I had gone to a vocational rehabilitation office to inquire about getting assistance in purchasing an accessible van.. The counselor had not come in yet. I saw a file on the desk with my name on it. The words "severely disabled " were written on it. I freaked out. I remember saying, "Mom, that's not what I am is it?" "No, that's just something they put down. It doesn't mean anything," my mom said. But I knew it did. It meant that society would always view me as different and make assumptions and judgments about what I'm capable of. It meant that I'd spend my life having to prove myself to others.

I was born with Spastic Cerebral Palsy. I knew that meant that a part of my brain had not properly developed and that my muscles are tight making it difficult for me to move my arms and legs. And, that because I had not attained standing balance as a child, I used a power wheelchair. I knew all the facts, but until that day, in the vocational rehabilitation office,, I never knew I was severely disabled. I remember thinking,"Okay, my limbs don't work properly and I use a wheelchair, but on the inside I am just like everyone else. Why can't people see that?"

Many people with Cerebral Palsy are mentally challenged as well. I'm blessed with a good mind. There have been times when people see me in my wheelchair with my caregiver and speak to my caregiver rather than speaking to me directly. They act like they don't even see me. This happened, most recently, at a hair salon and nail salon. The stylist was doing my hair and telling my caregiver what she was doing to get the style I had requested. More than once I had to ask her to please speak to me directly. Somehow our conversation got around to the children's book I'd written. The stylist looked over at my caregiver and asked, "She writes?" My caregiver nodded and said, "Yes." Things have improved at the nail salon, but when I first visited, the employees looked at me as though I was an alien from another planet. They asked my caregiver how my nails should be done. My caregiver replied, "She can tell you."

It doesn't happen as much anymore but when I was younger, quite often, I wasn't given a menu at restaurants. The assumption being that because I was in a wheelchair I wasn't able to read. This would infuriate me and I would (sometimes very loudly) ask for my own menu.

When I have book readings for my children's book I do a little lesson on disability awareness as well. I tell children that we are all unique and special people. When they see someone who looks a little different because they use a wheelchair, walker or cane, don't point or stare. Go up to them. If you have question, ask. You'll find you are a lot more alike than you are different. And, you just might make a new friend.

Children are much more accepting than adults. Adults have more difficulty accepting someone who is different. I'm asking anyone who reads this post to remember this. The next time you meet someone with a disability don't make judgements or assumptions based on outward appearances. Look past what's on the outside and try to see them for the person they are inside. Who knows, you just might make a new friend.










































Friday, August 24, 2012

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 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




































































































































































































































































































































































































































































































































Sunday, August 12, 2012

HAPPY (BELATED) 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 in front. 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 then 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 may be a 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 a period of 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 doctors appointment because Call-A-Ride was late picking them up. By the time they arrived at the doctors 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 safe 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.











































































































































































































































































































































Monday, August 6, 2012

GOING FOR THE GOLD

I hadn't planned to blog about the Olympics. What could I write about? My personal experience competing in sports consists of being forced to shoot a bb gun and bow and arrow at targets while at summer camp and an ill fated attempt to play baseball in a gym class in high school. (Every time I was at bat and the pitcher threw the ball I closed my eyes. It wasn't pretty.) Even though my three older brothers love sports, sports just aren't my thing.

Every few days I visit the website for the Today Show to see what stories they are covering. Last week I saw an interview with a young man from South Africa named Oscar Pistorius. Oscar Pistorius is a double amputee who is a runner in track and field. The men's 400 meter to be exact. He races on prosthetic limbs. I was amazed! He ran so fast! It took many years for Oscar to get to the Olympics. People said that his prosthetic legs gave him an unfair advantage over other runners because the blades on his prosthetic legs allowed him to run faster. Oscar went through extensive testing to prove the naysayers wrong. Last Saturday Oscar's dream of competing in the Olympics became a reality. He finished second in his race allowing him to advance to the semi-finals where he finished twenty-third out of twenty-four. It doesn't matter in what place Oscar finished. What matters is that he raced against able-bodied competitors. He achieved his goal. He didn't let what others said or thought deter him. Oscar believed and he did it.

I believe people with disabilities go for the gold all the time. Each time a person with a disability reaches a goal, that others have told them is impossible for them to achieve, is a gold medal moment in their life. One of my gold medal moments was getting a part-time job at St. Louis Community College at Meramec after my Vocational Rehabilitation Counselor told me I'd never find emplyment becase I need assistance with personal needs. (This was before the ADA was passed.) I proved my counselor wrong by creating a job for myself. I taught classes in computer software on an individualized basis of two students per class. It was offered through the Continuing Education Department. I retired in 2005.

Oscar Pistorius is an inspiration to all of us. .Through his racing he's shown us that no matter what your limitations are, with hard work and determination, you can achieve your dreams.






Sunday, July 29, 2012

YOU GOTTA HAVE FRIENDS

I have always felt I was on the outside looking in.  That true acceptance by others was and is just beyond my reach.  No matter what I do I'll never be good enough.  No matter how hard I try I'll never fit in.

I attended a public school for the physically disabled for thirteen years.  Because every child there had a disability, you would have expected that the children supported each other. that they would have had compassion for one another because they understood what it was like to be disabled.  And, that acceptance would be unconditional.  Not true. 

I startle very easily.  Any loud noise can cause me to jump.  Children would intentionally drop books on the floor just to see me jump and laugh hysterically.as though it was the funniest thing they had ever seen.  There were adults who delighted in making me jump too.  . 

I was not boy crazy as a teen.  I was wrapped up in the celebrities i saw on T.V.  I was made fun of, called names and 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, and 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 almost all of my life.  We share the same disability.  We were very close when we were young.  My friend was afforded the opportunity to attend a regular school long before mainstreaming was the. norm.   As we got older, my friend began to distance them self from me, choosing their able-bodied friends over me. My friend's actions let me know they were embarrassed by me.  I was the one who was disabled and my friend was  not.  It hurt.  Why wasn't I good enough?  As a result, we didn't speak for many years.

My friend has faced many life challenges over the years and has shown tremendous strength and courage. in dealing with them.  We have reconnected and talk when we can. 

My advice to any young person who is being made fun of or bullied  is stand up for yourself.   Find someone who accepts and supports you for the person you are.  We are all unique and special.  No one has the right to make another person feel inferior or that they don't matter. 

To anyone who bully's or looks down on someone because they are different, my advice is this.  I'm a firm believer in Karma.  How you behave toward other people will come back to you in either positive or negative ways.  Treat people with respect and dignity  and I have no doubt good things will come your way.

























































Monday, July 23, 2012

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 have 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 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 everyday.  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 how naive I am.  You are wondering why I would waste an enire post writing about how some people lie to keep themselves out of trouble.  I wrote this because it was important to 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.


















Monday, July 16, 2012

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 sweet 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 cause 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.  .

Thanks Tony and Liz for giving me a memory that will last a lifetime.



















Saturday, July 7, 2012

FOR THE LOVE OF LUCIE


I hate it when people tell me that my Maltese Lucie is "just a dog." Lucie is so much more than that. She is part of my family.

Lucie joined my family in 1999 after the death of our Maltese Frosty. Frosty had been viciously attacked by two large dogs that had gotten into our yard. We had an invisible fence for Frosty. When Frosty wore the collar for the invisible fence he couldn't leave our yard, but other dogs could come in. Frosty lived a week in an animal hospital, but his injuries were too severe and he died.

I was heartbroken. Frosty had always been near me. Either he was laying beside my wheelchair or sitting in my lap. Whatever room I was in, you could be sure, Frosty was nearby. I desperately wanted another Maltese. My mom wanted to adopt a dog from the Humane Society in hopes that the dog would be trained because she didn't want to have to train a puppy.

Mom saw how much getting another Maltese meant to me so she give in and we began looking in the newspaper to see if anyone was selling Maltese puppies. We found a breeder who had one female puppy left located in Bourbon, Mo. We agreed to meet the breeders in Washington, Mo. to pick the puppy up. Friends from church drove to Washington with us to pick her up.

The first time I saw Lucie she was a little white ball of fur with big paws. When they placed her in my lap her little pink tongue began darting in and out. I had eaten french fries while we waited for Lucie to arrive and she was licking the salt off of my fingers. Thus began her love of people food.

Lucie quickly became a doggie diva. She slept in bed with my mom. She refused to be put in a dog kennel when we were not home. she flunked obedience training and she refused to play with other dogs because she considered herself to be part of our family, therefore she thought of herself as a person, not a dog. Lucie had us right where she wanted us and she knew it. Mom and I spoiled her rotten.

Whenever my mom was in the hospital Lucie was my emotional support. Sometimes the only way I could fall asleep was feeling her little body near mine. Lucie also gave me something else to think about as I knew she depended on me to oversee her care.

When my mom was on Hospice every night when she went to bed she would ask, "Where's Lucie?" Our caregiver would put Lucie in bed with my mom so she could fall asleep. Now that my mom is gone, I'm the one who asks, "Where's Lucie?" every night.

When I come home she is always barking and has lots of kisses for me. When I leave I tell her where I am going and that I'll be back soon.

Lucie has many faults. She barks too much, begs for food and still has accidents from time to time. She's not a service dog in the traditional sense. She hasn't been trained to pick things up off of the floor and bring them to me. Lucie does however give me something just as important. Lucie gives me unconditional love.