A LOOK BACK...A LOOK AHEAD

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 thought my blog was unique and important enough to be part of the paper. 

Any disabled person who relies on caregivers has struggled 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 taking 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,  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 others 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.

if you set a goal in 2013 and reach it, think how fortunate you are to have had the experience.

HAPPY NEW YEAR EVERYONE!

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. 


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 other's lives. Stop texting and start, talking.  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 written in this post 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 other's 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."

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, everyone's mindset 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 Facebook 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.

PLEASE PRINT

Every morning, in first grade, 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/

My teacher didn't realize how hard I was trying to print my name like everyone else.  She did nothing to encourage me.  I think that was disgusted by the fact that I couldn't print my name

This morning ritual went on for months. Finally, 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?"   Clearly, she was clueless.

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

I was chosen to have my picture in the School and Home Newspaper. using my electric typewriter.  This was quite an honor for a seven-year-old. The photographer and the physical therapist came to my classroom.   I was supposed to type as if no one was watching me.  The photographer snapped the picture.  my physical therapist got angry because I'd hit the wrong key. (This woman wore her hair in a bun all year, but she took her hair down once a year to be a witch in my school's Halloween parade. I'm not kidding. All she needed was a broom. The day the photo was taken, 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, I still wonder where the compassion and understanding was.  It took me a little longer than my classmates to learn to print my name but I did it.  That should have been what mattered,





   

INCLUSION IS A BEAUTIFUL THING

Sadly, there are still people in the world, who think that disabled children should not be mainstreamed.  They think that having disabled children in a class, with their able-bodied peers, is a distraction.  Teaching a disabled child takes too much of a teacher's time.   

Those against mainstreaming argue that the time should be spent teaching an able-bodied child. 

What about the positive things a child with a disability can add to a classroom? Children 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 a 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. 

 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, and 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 college preparation that fall.

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

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.