Speaking on Determination.


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




One Response

  1. Well, naturally I love the ones with the cow and Duke. But I have to say that my favorite is the one with you and a bunch of parrots. I grew up in Miami and there is a place called Parrot Jungle there. It’s a rite of passage in every Miamians life to get your picture taken with your arms loaded with birds. They even put one on your head! Parrots are very, very heavy. Also, their claws are very, very sharp. I think it’s pretty funny to make people stand there with heavy birds on their arms and claws digging into their scalp and then ask you to smile for the camera. Great pics, Jan!
    Amy Cline at 9/23/2008 5:14 PM

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