Definitely Not My Most Charming Moment

8/20/2008

It wasn’t my most brilliant moment!  I am positive I looked like a crazy woman!  I  had arranged three rides on Lift this past Monday.  I normally stay away from a three designation trip, but sometimes I have to do what I need to do, and a few errands of mine needed to be handled. 

 

First, I went to the bank.  Then I went to the mall, because I needed to put more minutes on the cell phone.  When I was all finished, I planned to wheel to a grocery store, which was approximately two long blocks away.  It took longer then I expected to get my phone problems settled.  Then I let my personal assistant go and pick out a card, because I’m so nice! 

 

By this  time it was just after two.  The fact was a bit alarming to me, because I wanted to be at the grocery store shopping at three.  I was ravenously hungry.  If you have ever been ravenous when shopping; you know that the combo is lethal on the food bill!  I had to eat something before getting to the store!  Now I am not  the fastest eater, but I managed to gobble down a crispy bean burrito, and mexican fries, and a drink in record time.  When I was done eating it was about 3:20.

 

Now I start panicking, because my ride home was scheduled between 4:30 and 5:00.  Making matters worse,   I had never tried walking to this particular store before, but I figured it could be done.  It was an easy walk, but it took longer then I thought it should.  When we reached the grocery store it was 4:15. 

 

I considered just waiting outside the grocery store for the bus to arrive a split second, then rushed inside.  The bus could either be right on time, or 45 minutes away.   I wasn’t about going to wait around for 45 minutes, and wished I had taken the time to at least grabbed something for dinner.  My personal assistant and I went into high gear and started a fifteen minute supermarket sweep dash.  I am quite impressed with our accomplishment.  We grabbed only things on my list, and I didn’t run anyone over while doing it!  

 

I had just finished paying for the groceries, and the personal assistant was bagging the things up, when a  bus driver approached us.  He asked Margo if I was Jan Staehely.  Instantly my body went rigid, and was giving off some body language all it’s own.  My communication device was low on it’s battery, so with my own voice, I tried telling him that he could talk to me directly, but he just looked back at Margo and asked her what was wrong with me.  She told him that I wanted him to talk right to me, and not assume she and I were together.  He just said, “Oh!”  Then to me he said, “Shall we go get on the bus.  I said, “Sure!” 

 

I took off like a bolt of lightning.  I was irritated with the bus driver.  When I reached the bus about 10.06 seconds before he did, (Excuse me, I have been watching the Olympics!  Isn’t Phelps amazing!)  There was a bicyclist parking his bike at a bike pole.  The bike pole just happened to be right in front of of where the wheelchair lift would have come down.  The bicyclist ran inside the store before the driver realized what had happened.  I just had to snicker a little bit to myself, because the driver had to move   the bus enough to let the lift down. 

 

As soon as I entered the vehicle, I understood the driver’s motivation.  There were two other passengers already on the bus.  He thought he would shave off a few seconds by asking my personal assistant my name, help motivate me to get out to the bus, so that he could get back to his other passengers.   I guess his plan backfired on him!   I totally understood his need to get back to the bus, however I wish he would have addressed me straight from the beginning. 

 

It is my humble belief that most everyone knows their name, and can simply nod or  shake  their head to indicate yes or no  The  real issue is patience on the listener’s end!  If there is the slight pause, say five to ten seconds, the listener tends to sweat and wonder what they should do.  In reality, it may take me about fifteen to twenty-five seconds to think how to say something, and then another fifteen to thirty seconds to reply.   I just wish that everyone would treat people with disabilities the very same way they would like to be talked to! 

Posted at 9:37 AM by useuraac@yahoo.com

There is A First For everything

8/18/2008

I thought I would try putting together a slide show to go with my presentation on Self Determination.  I selected certain pictures throughout my lifetime that showed me being determined. 

 

This little project of my concoction proved to be very maddening for me.  I wanted the pictures to be in   chronological order.  However, because I had a couple pictures that were different from the rest, one was a poloroid picture and the other one a cut up picture taken from a scrapbook, the order was all mixed up.  Try as I might, I couldn’t get the CD to save the photos in the sequence I wanted. 

 

I had my personal assistant take the CD back to the store to see if they could help her get the prints in order.  The clerk sent her back home saying that we could arrange the pictures at home on my computer, and then e-mail the file in the correct order to the store.  I could then pick up the CD by 10 AM the next morning.  I was to give my presentation at 1:30 that same day!  After I finished calculating all the times I needed to be where, I realized it was possible to pick up the CD and still arrive at the Partners In Policymaking class well ahead of 1:30. 

 

When I went to pick up the CD, I insisted on previewing the CD before I bought it.  My heart sank; the photos still were not in the right order.  I was upset beyond upset.  I did not want to pay for the second CD, but in my hurried state, I just paid for the darned thing. 

 

I arrived at the class while they were breaking for lunch, which was fantastic because I had not taken the time to eat breakfast, and I was hungry.  However, I barely ate much, I was too concerned with what I was going to do with the slIde show.  I considered not using it.  Then when the class resumed, I suddenly had a brilliant idea.  I had maybe forty minutes to pull it off, while about five of the participants from the class gave presentations centered around their lives. 

 

I catched bits and pieces of the presentations.   One woman said she had thought about making a slide show, but she believed it would cause her too much frustrattion.  I wanted to shout, “Amen, I hear you sister!”  She went on to say that she just took her pictures, frames and all straight from the walls of her home.  I thought, why didn’t do that!  What was I thinking, have few pictures to share.  trying to pull off a slide show, when I obviously had no idea how to do it? 

 

This is how I presented the slide show: 

 

I have a few pictures depicting my determination over the years  for you to view.  These  pictures are not in the order that I want them to be in.  So, you can see if you can figure out what pictures I’m talking about.  

 

I lived on a dairy farm.  My 4H project taking care of a Guernsey cow. 

 

I graduated from high school. 

 

I dreamed about getting a dog.  I ended up raising a dog.  His name is Duke. 

 

My aunt decided that I could drive their tractor, and so with a little persuasion, I drove it. 

 

I went to Hawaii, and had a fabulous time. 

 

I went to the beach, and if you have ever tried to take a wheelchair on the beach, you know it takes determination!  Not forgetting the fact that it was near freezing that day! 

 

Side note:  I have not included my graduation picture here, because it’s black and white and I look terribly

Speaking on Determination.

8/1/2008

I had the pleasure of speaking to the Partners In Policymaking class a few weeks ago.  This class is sponsored in part by the Oregon Council on Developmental Disabilities.  The purpose for Partners In Policymaking is to educate parents, self-advocates (people with disabilities), and professionals who work in the field of disabilities, on how to be effective advocates in our lives, communities, and state issues. 

 

As an alumni of this class, I was thrilled to be asked to speak to the group!  Of course, I had a limited time to speak, so I kept my stories brief, however here on the olog I have expanded some stories, because I can!  Happy reading!    

 

I am here this afternoon to talk about self determination.  Do you know something?  I have heard the term, self determination a lot over these past fifteen years.  I have even been asked to define it while I was taking the first partners in policy making class.  However, that has been a while ago, so I looked up the words.

 

First, I looked up, self.  self, a person referred to with respect, a complete individuality.  A person’s nature, or character.  I love the next definition of self.   The ego that knows, remembers, desires, and suffers.   Looking up determination. I found it means, the act of coming to a decision, or settling on a purpose.  So, putting the two words together they mean.   by oneself without any outside influence.  Freedom to live as one chooses, or to act, without, consulting others.  Determination means, being resolute, and purpose driven.       How do I define  self determination?  It’s a passion to have a good life!  A strong drive to work hard to fulfill a goal. 

 

My mom is a great example of being self determined.    I grew up hearing about how she had to relearn everything after having Polio. When she had me, the doctors believe she had a stroke.  Once again, she found herself fighting  back to regain her abilities and  strength, so that she could continue raising her five children. Mom also showed her determination time after time as she fought to get the services I needed to grow into an independent woman.  Although, she claims that every time she turned around, someone would open the next door for us, I know  she spent a lot of time calling on the phone looking for the things I needed. 

 

I showed Mom that I had determination, too.  She thought I was purposely knocking my cough syrup out of her hand as she brought it to my lips.  However, I didn’t have much control over my left arm back when I was little.  Whenever, she came close with a spoonful of syrup, I could feel my body getting stiff, and then as if I were a marinate puppet, I felt my left arm flying crazily about.  I know it must have looked like I was trying to get out of taking the cough syrup. 

 

The truth to the matter was,  I hated feeling sticky, and I tried to avoid it at all costs.  I couldn’t understand why my Mom didn’t see that controlling my left arm was difficult for me.  At the same time, Mom couldn’t understand why I was being such a brat about taking my medicine.   The next time I saw Mom coming with a spoon and cough syrup, I was determined to show her that I didn’t mean to spill the sticky stuff.  Just before she reached me, I purposefully grabbed my left arm with my right hand, and held it down firmly.  Mom’s eyes grew big, and she asked, Jan, are you trying to tell me that before now, you couldn’t control your arm.  I nodded, and I was instantly forgiven!  Mom started laughing, and I soon joined her. 

 

I feel richly blessed for being able to live and grow with my family. Everyone treated me exactly the way they should: I got lots of love.  I was teased mercilessly by sisters and brothers.  My sister thought it was unfair that she had to clean the house, while I didn’t have any house hold chores. So, when Mom went grocery shopping, Carol would make me dust the furniture.  I loved that she thought me capable to do something. 

 

When I received my first power chair, my brother decided he would make sure I knew how to drive it.  Paul built an obstacle course on the highest part of our backyard.  If I went too close to one side, I might have gone over a two foot wall.  If I had gone far in other direction, I would have toppled down a rutted hill.  He wouldn’t let me go anywhere in public until I mastered the obstacle course, both   forward and backwards.  I took on his challenge.  I was determined to master the course within the week.  I think by day three, I had his permission to drive the power chair in the community.    

 

In January of my senior year of high school, Mom was in a near fatal car accident.   Both of our lives were changed forever that day.  Mom spent three months in the hospital, and another two in a rehabilitation center.  I suddenly went from Mom being my only care giver, to about five different people helping me.  Somehow I made it through to graduation.  My Mom made it home just in time to witness me graduating.  Mom made great strides in recovering from the accident, however she never regained her full mobility. 

 

Due to Mom’s accident, I was placed at the top of the crisis list.  I lived at home for another year.  Then a opening   at a group home, made it possible for me to move.  My brother invited me to live with him and his growing family.  I never wanted to live in group home.  So, my decision was difficult for me to make.  I finally decided that it was in everyone’s best interest that I move to the group home. 

 

I only had one thing in common with all four of my roommates.  We all were considered to have severe disabilities.  Fortunately, I always had a room to myself, where as everyone else had to share rooms.  I didn’t think it was fair, being as I was the newest resident in the group home to have her own room, but I sure  didn’t protest the matter. 

 

Living in a group home was not a picnic.  Five people needed to share two staff most of the time.  When there was a less then desirable staff on duty, everyone would request the more desirable one to help us.  If I needed some help to take care of a broken finger nail, which I can not stand to have, because I dislike it when the nail snags on my clothes, or scraps my skin.  I would usually have to wait until a staff was free to help me.  Typing is a lot easier with nicely trimmed nails! 

 

If we went out, it was usually as a group.  This may sound a little snobbish, but I didn’t necessarily wish to be in public with my house mates.  I preferred going out with family and friends; the people I felt more connected to.   However, I needed to get out of the home, too!   

 

We had to eat most of our meals together.   After dinner, the next logical thing to dowas to get everyone ready for bed.  I am a bit of a night owl.  So, I wasn’t not too keen on the assumption that I would go to bed before eleven.  So, I made a compromise with.the staff.  I needed to get ready for bed by ten, but I could go to bed whenever I felt like it.  And, since I could get in and out of bed by myself, I could literally go to bed whenever I felt like it. 

 

It’s needless to say, I spent most of the time in my room.  I had a computer that I did stuff with. I paid to have a phone in my room, that way I could call Mom or one of my sisters whenever I needed to hear a friendly voice. 

 

I made a decision, that I learned to regret.  As morbid as this sounds, I got into the group home, because someone past away, and I took over their spot.  The person had gone to a vocational work shop during the day.  I was given a choice, between going to college, or the vocational work shop, which I critically dubbed, the day care program.  I did not feel I was ready to go to school.  I didn’t know what I wanted to work towards career wise.  So, as dumb as it may seem, I picked the day care program. 

 

I was reasonably content being there for about five months.  Until I learned the vocational work shop was going to merge two completely different groups together.  The original group consisted of people who were physically disabled, and the other group of people were cognitively disabled.    I didn’t see the logic in putting these two different groups together.  This new group of people were known to have emotional outbursts.  I mean, it wasn’t uncommon for someone to get so upset that they would throw a chair across the room.  I could just picture someone getting hurt who could not physically protect themselves.   I was determined not to let it happen to me, that’s for sure!  

 

I stated my concerns to the management at the vocational program.  I was told that they understood my worries about the merger, however they felt confident they could control the new atmosphere.  I quickly decided that I would prefer  to go to college, after all.  Guess how long it took me to get out of there?  It took a year!  Can you believe, that? 

 

I think they didn’t want to lose the money my services brought in.  Most of the time I refused to go to the vocational site.  This made the group home rearrange staff for the times I stayed home.  The day care program brought in someone to test my skills.  I suppose they needed to be certain that I was too smart to be stuck in some musty old work shop.  I scored extremely high on all of the tests, except on the math test.  Try typing, and solving math problems on a typewriter, and you might be a blockhead, at math, too. 

 

I was finally released, but not before an emergency ISP meeting, with my team present to confirm the decision to setting me free.  I went to my local Community College where I took lots of writing classes, and for a time worked on the college’s newspaper, writing articles.   

 

In the middle of all the day care program drama, there was an opening in another group home more suited for me.  The decision to move was an easy one. I still spent the lion’s share of the time in my room, because I now had homework to do.  However, I socialized more with my new house mates.  

 

I wasn’t in the new group home very long when I learned about a new program called, Supportive Living.  I could live in my own apartment, with a personal assistant.  I could eat when I wanted, and go out and do things when I wanted.  I didn’t even think about it, I put myself on the waiting list to get an apartment. 

 

The process of actually finding an apartment that was fairly accessible was not easy.  When the scouts had five possible apartments, I went to look at them.  The first apartment I saw was completely trashed.  I don’t know why the apartment manager let me see it that way.  Perhaps she didn’t want me as a tenant, because I sure couldn’t live there after what I had seen!  The other four apartments were okay, I just had a hard time picturing myself  living in any of them. 

 

Mom kept telling me about an apartment that was available three miles away from home.   I resisted looking at the apartment, I didn’t think I wanted to live that close to family.  Guess what?  I ended up getting the apartment Mom suggested I check out.  Mom’s have a way of knowing what’s best, in some cases!  I have lived there for fifteen years. 

 

There is a second piece to self determination.  Nobody really wants to hear this, but it’s an element that has to be present.  The element is called, responsibility.  I couldn’t have lived in my apartment for as long as I have, if I wasn’t responsible to pay the rent each month.  I need to make sure I make the time to go grocery shopping, or else I would have no food to eat. I need to make sure I am going to the doctor when I should.  No one else can tell me how I feel.  My list of responsibilities goes on and on.   I could not be here today, if I hadn’t displayed how responsible I am.  So, if you think you can be self determined, without being responsible.  I have some news for you, it doesn’t work like that.  To be self determined, goes hand in hand with being responsible!  However, you can still have fun adventures! 

Posted at 4:16 PM by useuraac@yahoo.com