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!! 

Stuff to do

So if you read this you know I am not working right now and I would like to change that.  I try to do different things.  Maybe develop a skill,  Maybe volunteer to help out the choir or a local charity that I like.  I serve on the board for local transit. 

Just a flower I kinda like

One thing I really like to do is what I call public speaking.  It's really more like sensitivity training about disability issues.  I realize the fear of speaking in public is a fear many people have.  I don't.  I like to use my experiences and energy to get people thinking.  (And I like to be the center of attention.)   On Monday, I will be talking to the inclusive education classes at the local University.  I am always up for these classes and I have spoken at them for years.  Paid or not.  Working or not.  My hope is that the people that had me speak to their classes will be a little less nervous, a little more open to differences in instruction and a little more understanding when they have students with disabilities in their classes.  I don't know if I achieve that but the feedback is pretty good.  Id really like to do more of this.

So if you read this and know of anyone who needs a motivated person who likes to speak to people and provide information, post a comment or send an e mail.  Thanks a bunch and take care.

Dating

I was going to talk about something else today.  But something happened and I decided to talk a little about online dating.  Several people I hear have success with online dating.   It has potential but people with disabilities have all kinds of special concerns.  For example if you meet online or your disability is not obvious do you tell them?  There are several people out there who will date someone just for a roof and a regular disability check so we always have to worry about that. If the relationship turns sexual is that something you want to do?  Can you express yourself sexually and be safe from unwanted pregnancy and disease? Then we have the same thing everyone else has to worry about.  What kind of relationship do you want?  Is this relationship going to be successful?

Let me tell you that I am no expert in dating.  However I know what I want.  I want someone who's looking to be in a relationship.  I want someone who makes me laugh.  I want someone who enjoys talking with me.  Not just to become what I want, he talks to me because he likes my company.  The relationship does not get sexual until I am comfortable with it.  When all those criteria are met and I return them is when I can be in a relationship.

I have a few rules I use to decide.

• If he/she comes on strong and does not back off when you ask- run! or wheel away as fast as you can.
• If he or she starts asking for money even though you only get disability -run or wheel away as fast as you can.
• If he wants to take care of you and you've been fine on your own-run or wheel away as fast as you can.
• If he likes to brag about everything he has (but looks like he's homeless)- run or wheel away as fast as you can!

If he talks to you, makes you laugh, tries to hear about all your stuff and tells you about his, then maybe he's a nice guy.  I've met a few of them (they never seem to be interested back) but here's hoping.  To the guy who talks to me on Facebook.  If you are reading this, back off! Be my friend first.  If you are what I am looking for it will take time for me to get there.  I am not looking for a better half just a special love. 

Good luck, Please be careful and smart, and take care

Online Classes

When you are out of work for long periods of time, It's important to work on any skills that might be weak.  I learned a long time ago to pay attention to any criticisms  people may have of me.  I don't always believe them but I will listen.  A good way to deal with any skills that may be lacking is to take classes to improve them.  The local library here has computer classes for free.  http://www.wicomicolibrary.org/  Check with your own local library to see what they offer.  Some senior centers and Goodwill offices may offer classes either free or at a small fee.  Check out your local Job market or employment agency too.

When I can get the money, I like to take online classes.  My favorite place to go is http://www.edtogo.com/.  It has a lot of classes that interest me.  They cost around $100. 00 per class but you are investing in yourself.  Online classes are convienient.  No one cares what you look like or if you are eating in front of the computer.  But I am challenged by them as well.  I am an educated person with a Maters degree in post secondary education.  I am no stranger to a classroom be it teaching in one or being a student.  My brain does not seem to be geared towards the virtual classroom.  I like having different things to do during my day so stopping for however long it takes for me to read the instuctors lessons, assignments and comments can be quite difficult for me.  I spoke about this to a local professor.  She told me that you must treat an online class like any other class. If the insructor posts his or her lesson, you have to decide what day and time your going to read that lesson and stick to it!  I'm going to try her advice on the next class I take.  I am looking into if I should do my own consulting on disability issues.  I have a business card all done.  The picture above is a scan of my card.

meetings

Four legged child "Fat Boy"

I have been looking for work for over a year now.  I am quite frustrated.  I knew I would be.  I even work with a job developer whom I like but she is just as frustrated as I am.  She has several consumers with disabilities that she works with.  She tells me that most of the people with obvious disabilities that she works with she has not been able to get work for either.  I often wish people would get past the outside issues and really give me a chance.  But these feelings are not unusual when you have been the victim of discrimination. 

The local job agencies recommend that you volunteer.  I disagree with volunteering in order to get a job.  There are good reasons to volunteer.

• To help when there is a need such as working in a homeless shelter.
• To learn more about a particular profession
• To meet new people
• To develop skills that might be weak (computer work/customer service)

I think if you volunteer in order to get a job you will be stuck.  If they have you as a volunteer they will never pay you.  Why pay if you already work for free?

I am in the process of creating business cards with this blog website on them.  It is my hope that passing these out will lead to some type of employment be it short or long term.  I will post a scan to get feedback.  If anyone is reading this, what are your experiences in job hunting?

It's good to belong

I have a real idea that everyone should belong to something.  Maybe it's a local church.  Maybe it's a class somewhere.  Maybe it's an improvement committee for your workplace or town. I think a sense of belonging helps keep away loneliness and even can give someone support and a sense of meaning. I have a local choral group that I belong to.  I have belonged to this group for several years now.  The people in this group follow me home from rehearsal to make sure I am safe.  They have helped with the four legged children when they needed a vet.  They have sent flowers and prayer requests when I have been in the hospital.  I have been a part of this group no matter what the name was and no matter who directed it. 

As far as inclusion and fairness are concerned, I want to give special credit to the current director Bill.  From day one he worked to make sure I felt a part of this group.  Most of my life has been spent being overlooked or worse, overprotected or kept out of things.  Bill has given me solos even just a line or two, and he has made sure I have a place no matter what the performance.

The latest example of good inclusion practice from Bill has to do with the rehearsal room.  Bill is putting the university choir and the community choir together on the same music.  This means instead of 30 or 40 people singing,we have 60-80 people singing.  Both choirs cannot fit in the choir room together so we have to use the band room.  The band and choir rooms are both down a set of stairs.  A person using a wheelchair needs to use a lift elevator similar to this one:

 Only I showed up at rehearsal and the lift did not work.  I was frustrated but not angry.  It wasn't Bill's fault and it was only a rehearsal.  I decided to sit up at the top of the stairs and sing from there.  Two of my friends sat and sang with me so I was fine.  Bill was not.  He let everyone in that room know how upset he was.  He and another staff member who was singing sent an e mail to the school authorities that night.  I just came home from rehearsal.  The elevator worked fine. 

I am a strong advocate for myself.  I have no problem speaking up when needed but I also pick my battles.  Bill was upset enough for the two of us.  Thanks Bill glad you have my back and I'm glad I belong.  By the way our next performance is:

Messiah by Georg Friedrich Handel presented by the Salisbury Chorale, University Chorale and The Harlem Festival Orchestra

Saturday, April 30, 2011 7:30 PM in Holloway Hall Auditorium,

Salisbury University

With Guest soloists Reginald Pindell, Bass; John Wesley Wright, Tenor and Salisbury University Students

Dr. William M. Folger, Conductor

Tickets: General Admission - $20 and $15 for Seniors – Salisbury University ID holders, 1 free admission (donation requested)

For more information call 410-543-6386

Signing Off

Reflections



This is a picture of a beautiful tree in my neighborhood.


I was headed to my local dollar store to stock up on some basics.  It's a lovely day and looking at this tree made me smile.  I love the pink color.  I was thinking how nice it was to have my care provider and just go to the store as needed instead of waiting for family or friends to be free and help.  So I would like to explain the type of living arrangement I have, and talk a little about what I think makes a good care provider, personal care assistant, helper, mentor,(just Do Not say sitter! I am not a Child) whatever the label she is an essential part of my personal and hopefully one day professional well being.


I have what is known as a Community Supported Living Arrangement or CSLA.  This happened for me because I had a fall due to my wheelchair malfunctioning and some major changes that happened too quickly for me to deal with alone.  The social worker helping me with my case petitioned the regional Developmental Disabilities Administration http://www.ddamaryland.org/ to provide a budget for me.  This budget helps with lots of the extra things such as lawn care and incontinence products.  The next step was to choose an agency to oversee my care.  There are several agencies that can provide care. I chose my local Epilepsy Association. http://www.eaes.org/ I felt they would be the best ones to allow my individualism and my not make me get rid of my four legged children.  If you are searching for an agency you must decide for yourself what fits you best.  Be careful and do your homework.  Gather as much information as you can.  Talk to consumers and families if possible.

Then I was allowed to chose a person to help me.  I had worked with my provider through another agency during a short term issue.  I liked her and my family liked her.  She works hard and does her best to keep me comfortable.  What's better is that she has become a friend. 

When I worked with other people with disabilities, I used to ask them if they were happy and did they have friends.  Often the person with the disability would say their care provider was their best friend.  We would think "What a shame this person's best friend is someone paid to be their companion"  It's not necessarily a shame.  I have a few of my own friends that are not paid to be friends.  I consider my care provider my friend.  A care provider can do his or her job without being friends sometimes.  But a provider who is a friend cares and sits at the hospital when you are sick.  She makes sure your family is notified.  She listens to your worries.  She makes bread pudding for you just because she thought you'd like it.  When she comes to your home, she talks to you about you and about her. She expects a listener, and a friend in return.  We are new friends but hopefully we will be longtime friends.

I am writing a lot today.  Forgive me and take care

Have a lazy Sunday

Is there anything better than a lazy sunny Sunday afternoon?  Even when I'm not working I love a good Sunday afternoon.  Do I cook or not cook?  Do I play with my four legged children or do I just feed them and let them do their will?  I might like Sunday because it's the one day when my choices are as easy as the day.

My Anxieties keep me awake most nights so I often sleep late on a Sunday.  A good movie or two and some cross stitch will get my brain flowing better than coffee on these days so I spent my time watching movies and stitching for a while.  The picture above is the last design I completed. Though I converted this design from a rug pattern I had, http://www.dmc.com/  has some nice free designs in case anyone is interested.

So often lately I feel like one of those rubber balls that you bounce when you play handball.  I'm bouncing hard against a brick wall.



                                                      Bounce-Find a job

Bounce- get more money

Bounce-pay your bills

Bounce- fix your house

Bounce- take care of your health needs

Yet I keep bouncing back for more no matter what happens.  And the brick wall never moves.  But on Sunday I can stop.  Even if it's just for a few hours.  Enjoy your Sunday and take care

Just an intro

This is a blog about having a severe disability and finding myself.  I am 43.  I am also without a job. Boy do I hate it.  I live in a town trying not to be a big city.  Yet it has all the big city troubles with crime, large gaps between those people with money and those without, (you can guess which side I'm on) and every other city trouble.  Plus we are several years behind the rest of the world in attitude. There is racial, ethnic, sexism, and disability predjudices running willy nilly through people's hearts and minds here and most people think nothing of it as long as it is not bold and in ones face.

But there are things I like here too.  I'm close to the beach.  I love farmer's markets.  I have family here.  I have cats that can play outdoors.  Little kids can play in the playground nearby. 

My disability ic CP. http://www.ucp.org/  It is due to brain damage at birth.  I use a motorized chair.  and I have a great part time care provider who I think the world of.  She makes my life.  A lot less frustrating.  It's trying to have money enough to survive that gets me.  So I will be letting you know of any interestig ideas I can come up with.  I would be interested in anyone's ideas.  Signing off for now