Thursday, January 31, 2013

WE'RE HERE AND WE'RE NOT GOING ANYWHERE

I'm sure you have heard about Michael Garcia, a waiter at a restaurant in Houston, who refused to serve a group of people after hearing one of the members of the group make a disparaging comment about a five-year-old little boy with Down's Syndrome named Milo.  The comment was, "Special needs children need to be special somewhere else."  My first thought upon hearing this was,  "Oh really, where, a desert island perhaps?"  "Someplace where Milo doesn't make you uncomfortable or disrupt your dinner."

I thought this was 2013 and those kind of comments were a thing of the past.  I guess I was wrong.  There will always be people like the restaurant patron who think disabled people are second-class citizens who don't deserve the same rights and privileges as everyone else. 

I have been thinking about times in my life when I was made to feel that I wasn't deserving or good enough.  There have been many, but one that stands out is when a dean, at George Warren Brown, called me shortly before graduation to inform me that I would have to be at the end of the procession when my class marched  into the auditorium.  I couldn't take my place in line alphabetically like everyone else.   I mentioned the conversation to a professor friend of mine saying, "I don't care, they can give me my diploma in the parking lot.  I just want to get out of here."  Being told I would be at the end of the procession hurt, but I didn't think it would do any good to protest.  The day after talking to my professor friend,I received a call telling me that I would be marching in the auditorium in alphabetical order just like everyone else,  I never did find out what my friend said to change the dean's mind, but it was nice to know that someone went to bat for me and thought I deserved my rightful place in line.

I am glad that so many people supported Michael Garcia's actions.  He risked his job to support Milo.  That took courage.  Not many people would have done that.  He saw past Milo's  disability and just saw the sweet little boy he is.  I'd like to thank him.  By supporting Milo he  showed support for all children and adults with disabilities.  I hope others will learn from his example.

I'd like to remind the restaurant patron that you can't catch a disability.  Having a disability is not like having a cold. Disabled people deserve to be treated with respect and dignity.  Milo deserved your respect and to be treated with dignity.  I hope someday you'll regret your comment.  I hope that you'll be able to open your mind (and heart) and see the person, not just a person's disability.  We won't go away just because we may make you uncomfortable.  We're here and we're not going anywhere.










 



Thursday, January 24, 2013

AMAZING GRACE

I submitted this article to the "Blessings" column of Good  Housekeeping Magazine in 2007.  I wrote it after my friend, Grace, was diagnosed with Pancreatic Cancer to thank her for all she had done for me.  She died in 2008.  I realize this article is old.  It didn't make it into the magazine.  I'm posting it now because I want all of you to know what a special person Grace was.  There should be more people in the world like her.

 I was born with Spastic Cerebral Palsy.  In the fall of 1976 I entered community college.  One of the first people I met was Grace, the campus nurse.  Whether it was a medical problem, or you just needed someone to talk to, Grace was there for you.  She helped disabled students in countless ways.  From feeding those who needed to be fed, to making sure motorized wheelchairs were charged and ready for use.   There wasn’t anything she wouldn’t do.  She believed the disabled were just like anyone else long before the belief was politically correct.  Grace looked past your disability and saw the person.  She wanted disabled students to be as independent as possible on campus. The Americans with Disabilities Act was nonexistent back then.  Without her daily assistance it would have been a lot more difficult for me to attend college.  Many disabled would not have gone at all.

We’ve remained friends for more than thirty years. She has been a constant source of strength and support for me.  When my mother fractured her hip several years ago I wasn’t sure what was going to happen to me.  With no one to stay with me there was a strong possibility that I would have to leave my home and go to a respite care facility.  I called Grace, there was no answer. When I finally reached her she was tired from doing yard work all day.   I frantically explained my situation to her.  In spite of how tired she was she came and stayed with me.  She’s come to my rescue numerous times since then.

Grace never fails to make me laugh.   She once made up a silly song, on the spot, about one of my caregivers. Grace was meeting her for the first time.  When the young woman arrived Grace began singing and dancing around the room.  We all got a big kick out of it.  She always says, “You just like me because I’m silly.”

We love to shop.  We can browse for hours especially at the jewelry counter.    Grace will pick out earrings and hold them up to my ears and say, “You should get these.   They’ll look good on you.”

Grace has a positive attitude and a tremendous faith in God.  She makes me feel that I can do anything.  I’m trying to get my children’s book published.  It has been rejected by several book agents.  Grace is certain that my book will be published someday and encourages me not to give up on my dream. 

There have been times in my life when, had it not been for Grace’s love and support, I’m not sure I would have made it.  You won’t find many people like Grace.   She has taught me to believe in myself, to persevere, and that even when your life looks bleak; things will work out if you just have faith.  She is the kindest most understanding person I have ever known.  I’m proud to call her my friend.
 

Monday, January 21, 2013

LIKE SANDS THROUGH THE HOURGLASS...

I didn't have a lot of friends growing up.  There was one neighbor girl who came over to play,  but as time passed,  she just wanted to have tea parties.  Tea parties consisted of soda and cookies.  When the soda and cookies were gone, she'd find an excuse to go home.

During school vacations there wasn't a lot to do.  Daytime Dramas  (or soap operas as they are more commonly referred to) became my afternoon past time.  I looked forward to getting lost in the problems of my favorite characters because their problems sure were a lot worse than mine.  I can hear you groaning or laughing, or getting ready to move on to another blog.  You're  asking yourself,  "Is she really going to devote an entire blog post to discussing the positive aspects of soap operas?"  Yes, I am, because I think soaps  inform as well as entertain.  A person with a disability can experience things via soap operas that they may not have the opportunity to experience in their everyday lives. 

Many actors such as Alec Baldwin, Meg Ryan, Kevin Kline and Kathleen Turner got their start on soaps.  Soaps have raised people's awareness of many issues such as breast cancer, infertility and AIDS. I'll never forget  when, the now canceled soap, Port Charles cast actor Mitch Longley, who is himself a paraplegic the result of a car accident, to play a surgeon on the show.  He had a wheelchair that raised him to a standing position for the scenes in which he was supposed to be performing surgery. I remember thinking how cool it  was that the show cast a person with a disability and I wondered how I could get a chair like the one Mich used on the show.

Soaps afforded me the opportunity to make friends.  My mom and I attended soap fan weekends in California for many years.  You would see the same people at events every year.  I was always accepted because all of us had a common interest, love of a show or a particular actor.  No one cared what my disability was.  Some of the people I met in California I'm still friends with today.  I  have to admit those weekends were probably the only time in my life that I didn't mind being in a chair because I got a lot of attention from the actors.

Talk shows may be less expensive to produce and provide information to viewers, but I think soaps derserve a place on network daytime television too.  Two canceled shows will now be on the Internet.   I guess that's good, but it won't be the same.

 I debated whether to write this post or not.  Soaps have been a part of my life for almost as long as I can remember.  I have had many great experiences because of soaps and met amazing people.  Soaps won't change the world, but  they do alleviate stress because, for sixty minutes, at least, your worries are gone.  Whatever your feelings about soap operas are, that's definitely a good thing.

























Monday, January 14, 2013

MAKING THE BEST OF THINGS

When I was a teenager, my mother had to make the difficult decision to place my grandfather in a nursing home.   I remember going to visit him with her one day after school.  It was hard enough seeing my grandfather in a facility, but to make matters worse, one of the residents saw my mom pushing me in my wheelchair and asked, "How long has she been here."  I got very upset.  We told a staff member about the incident and they told us that the facility wouldn't accept anyone as young as I was. ( I was fifteen or sixteen at the time). but that incident was enough for me.  I rarely visited my grandfather or anyone else in a nursing home after that.

Then, I began volunteering at the independent living center.  One of my clients was in a nursing home.  My job was to visit them every week.  I didn't want to do it, I didn't know if  I could do it, given my past experience with nursing homes, but it was what I'd been assigned to do, so I really had no choice.

Going in to the facility, I made my way to the elevators and was met with the smell of stale food as the elevators were next to the cafeteria and I  usually arrived shortly after breakfast.  I'd ride the elevator to my client's floor, come out by the nurse's station and see many residents sitting around a table, some sleeping, some awake but staring at nothing and some still alive, but from all outward appearances, looking like their souls had already left this world, but their physical bodies hadn't gotten the message yet.  There was also a strong odor of urine.  To say it was depressing is putting it mildly.

The conditions didn't seem to bother my client.   They were always smiling and happy to see me, full of questions about what was going on in my life.   While still relatively young to be in a facility, they handled their situation with grace and dignity.  And, yes, even though my client was in a facility, they still maintained a degree of independence.  Making their own decisions  and choices.  I wonder if I could ever achieve the level of acceptance my client had, If I found myself in a similar situation one day?  I wonder if anyone could? 

I tried to have myself removed from the case after that first visit.  I just couldn't imagine going to such a depressing place every week to visit someone who was approximately my age.  It hit too close to home.  I saw myself in my client and it scared me.


I visited weekly for nine months.  We found we had many things in common.  I am glad I was given the client in the nursing home because I saw someone in a truly horrible environment who was able to smile, take an interest in others and still find joy in life, 

Many times we get lost in the negative and forget to look for the positive things in our lives.  No matter how bad a situation is there is always good, always joy.  We  just have to open our hearts and minds to find it.