Random thoughts

I really don't have much to say today.  I spent most of the day with over 100 musicians and singers with my head in a copy of Handel's Messiah    Getting up at 8:45 am on a Saturday is a bit nerve racking.  Having to be in my chair from 9:15 am to 3:15 pm and then back in the chair from 5:00 pm to whenever I finish today is a bit much for me.  This is a sign of a few things. 

1. I need a new chair.  I should start the ball rolling soon.
2. I desperately need a tilt in my chair.  A tilt in the seat of a wheelchair help relieve pressure.  The seat tilts backwards.  This takes weight off your rear and the spine.
3. I am getting old.  At almost 44, I just may not be able to do all the things I want in a day.  Too young of a brain for too old of a body.
4. I need to lose weight.  Losing weight will relieve some pressure.  But I am stubborn.  I like what I like and I don't like what I don't like

In any case me and my chair made it through.  The concert was awesome.  The result was definitely worth a bit of pain.  Signing off for now.  I will be sleeping in tomorrow.  Take care.

Blowing off some steam

Sometimes life feels like it is one challenge after another.  Some challenges are easy, like making sure you are up in time to make it to Saturday's10 am rehearsal when you really want to sleep until noon.  Some challenges are much more difficult, like finding a job or making sure that you and three animals eat when extra income is a big issue. 

When I begin to feel overwhelmed,  I usually think of ways to blow off steam.  People blow off steam in different ways.  Some people use shopping.  (I love to shop but need to be careful of money.)  Some people exercise.  (That can be an extra challenge for those of us with physical disabilities.)  Many people like to use alcohol to help them blow off steam and relax a bit.  I confess I have done this some myself.  One of my favorite ways to blow off steam a bit is to watch movies.  Movies actually change my mood!  Need a good laugh?  Mel Brooks movies like Young Frankenstein or Robin Hood Men in Tights  Jim Carey in a non Mel Brooks funny guy he get my attention as well.  Need to cry?  A good tear jerker works.  Steel Magnolias or Dear John do the trick for me  Feeling Romantic  this is my favorite movie category.  I do not have romance in my life now so I can get it through the movies.  I subscribe to cable as well so no money is OK there are lots of free movies on demand.  A good movie watch can see a movie 15 or 20 times and still see something new.  I'm even acquiring quite a collection of DVDs.  Anyway, Everyone needs some way to express feelings and get away from the world.  Some ways cost more than others.  Weather you have a disability or not I hope you find your means of personal expression.  If your like me and you watch a lot of movies, check out Internet movie database you can find info on just about any movie ever made.  Gotta go.  I should be in bed got a concert tomorrow.  On Monday I am seeing Medea's Big Happy Family.  I need a laugh.

Stormy Weather

In case no one knows this,  I have a few problems.  I have money problems and I have some minor health issues but I have also been diagnosed with depression and anxiety disorder.  I am not saying this to complain or to get pity.  In fact I do not want any one's  pity.  I say these private things just to tell you what is.  In fact depression is quite common.



picture of tree in storm clouds



I found an article on the Internet that stated that as many as 17 million Americans suffer from depression.  It also states that depression is the most common secondary disorder for people with disabilities and chronic health conditions. (Depression article)  Having lived with a disability for a few decades now, I am not surprised by this statement. 

I know that most of my depression comes from frustration kept inside.  I want to do things and experience life but a lot of prejudice and injustice has kept me from doing everything I would like.  While I work on the prejudices and injustices by teaching, speaking, and trying to work, I also take medication and see a counselor.  I use the sessions with my counselor much like I use this blog.  I vent, cry, get mad, all that stuff.  I also try and make it a nice day in the end.  I may go shopping (even window shopping helps) or meet a friend for lunch and a few drinks.  Even though I have these "problems" I try to get the most out of life.  If you ever decide that you need help with depression don't be afraid of medicine and counseling.  Counseling for me helps me see why I get depressed so that I can find my way through it.  Then I can return to trying to get what I want from life.  Whatever you want from life, keep trying to get it.  Signing off

What is networking anyway?

When I went to choir practice yesterday I took some business cards with me.  I was hoping to connect with the person who helped me out during the elevator incident. (see earlier blog about belonging)  Luckily she was at the rehearsal. We had talked about doing a disability sensitivity workshop with staff and students with disabilities  She would do the Americans with Disabilities Act stuff and I would do the advocacy stuff.  I don't really know if it will come to pass.  She did say she would have me speak to her intro to education classes.

She told me she just got done speaking at a conference at Rutgers where the student who was a homosexual killed himself.  Since she was doing more public speaking than I, I asked her if I was on the right track with this speaking and consulting thing.  She thought it was a good idea and that I should definitely go for it. "So how do I get speaking engagements?"  Her answer was to network.  Basically that means talking to anybody that may be interested in disability stuff or motivational speaking give them my info, tell them what I do, and hope for the best.  It's a little like professional begging I think but what have I got to lose?  You network any and every place you can.  As the lady told me you never know who will call.  Here's hoping.

The System

There are a lot of different systems.  The education system, the child welfare system the health care system, pretty much any government program has a system to go along with it. To me the disability system has to be one of the most outdated set of government programs ever invented. I hate the disability system.  You are not allowed enough money to live comfortably. You are not allowed to save money. You cannot invest money.  If you end up working and still have a disability like I do your disability gets cut after you earn a small amount and your insurance probably got cut before that.   I decided to do a bit of research about where disability insurance came from.  I found that information on  the Social Security  website.  The social security insurance system came into being in 1956.  According to what I read this insurance system was started for workers who had difficulty working due to age related conditions like arthritis.  It was not used for younger adults until the 1970s I think.

This explains a lot.  I understand a bit more why everything in this system is so messed up.  The congress that passed this law did not know there were younger people like those of us who were born with disabilities.  They may not have thought even about those people who acquired disabilities from injury or illness.  They didn't know what was in the population then.  They don't know about this population now.  The reason why this system does not help me support myself is because it wasn't made for me.  It was made for my mom and dad.  One of them is dead and the other does not work anymore.

I am still stuck with the problem of not working.  The article that I read stated that the passage of laws like the Americans with Disabilities Act was supposed to help shrink the number of people receiving disability insurance.  Even the person who wrote the article says that has not happened.  Why because laws don't change minds.  Talk to those who lived through the civil rights movement of the 1960s.  So do I try to get a traditional job?  Do I create a non traditional job such as public speaking or consulting on advocacy?  I don't know I just know a few things.

1. I have to do something
2. I hate living on disability
3. Like most of us I am better at doing things I like rather than just getting paid.

I also know that it is most people's American dream to be rich and not worry about money.  I would just like to be middle class.  I want to be able to pay my mortgage, have enough food and after all my bills are paid, be able to go on an occasional vacation.  What a goal! anyway signing off.

classes

On the day after Easter I got up at 6:00 am to begin to get ready for the presentation, speech whatever I was scheduled to do for Dr. Pennerman's inclusive education classes.  Thanks to my care provider who got up early to help me, I was dressed and at the university 40 minutes ahead of schedule.  Good that I did not have to rush, Bad because I hate to wait.  One cup of french vanilla hot chocolate and one ham egg and cheese bagel later I was ready to go.  As I said before I actually like speaking in public. I worry though that I am not helping these students be a little more relaxed and familiar with people with disabilities.  Is my presentation working to fight some of the stereotyping and discrimination that happens to all of us with disabilities.  OR am I so stuck in my own adjenda that I cannot see the obvious.

My goal with this presentation is to get future (and practicing teachers when possible) to examine their understanding of beliefs and stereotyps of people with disabilities and try to keep them out of the school classroom.  Teachers in my opinion can be one of the first real advocates for people with disabilities by promoting understanding and supporting the individual rather than looking at the disability and managing it as a set of symptoms or behaviors.

serenity

If I were back in grad schoool,  I would find a set of tests that measure attitude and test these students to see if I really have an affect on them.  Oh well a future doctoral thesis maybe.  It was fun as always thanks Dr.P    

Happy Easter Anyone?

Hope everyone is having a happy Easter Sunday.  This was not a lazy Sunday for me.  I know that most people were cooking and eating and worshipping this Easter.  I was getting ready to speak to my classes.  I checked to make sure I had my videos and books that I use.  thought I lost a video and almost had a heart attack.  But I found it again resting quietly in a different. I made more copies of the new business cards just in case anyone wanted one.  I have the outfit picked out.  I have even talked to my care provider to she if she can come early.  (She will if she can get up) I have done this class so many times it is old hat.  I always get a bit hyper the night before.  I am terrified I won't wake up in time to get ready properly.  I am just not used to getting up early. 

I have spoken to these classes for over 10 years now.  This is a college class on inclusion for undergraduate and graduate students.  These classes are close to my heart.  I believe that speaking to those classes is my way to get people to look at things differently.  Use my experiences, my words and what I show you to figure out that just because you have a disability doesn't mean you can't do anything.  What is labeled isn't always what is true.  There is a huge difference between support for success and pity.  Always look at the individal not the disabilty.

I get so sick and tired of people (kids and adults) thinking they are doing me a favor by wanting to fell sorry for me alone and single with a disability.  I hear people say they will pray for me to walk.  Or that they will pray to heal me.  I am NOT SICK.  I AM DISABLED.  Don't pray for me to walk.  Pray for me to get a job so I can take care of myself and make my own way in the world.  I am not God's mistake and God does not have to end my suffering.  My problems were not made by God they were made by man.  It is attitude and stupidity that holds people with disabilities behind not the disability.  I hope I get that across tomorrow.  If I do maybe then those students will become teachers and help their students to see HOW you treat people as they pass through your life is what makes a decent human being.  Not who is popular, not your or your parents money, not if your sports team won.  A decent human being sees the human in all of us  Happy Easter!!