Welcome to our world - please don't move anything

With the recent arrival of COVID-19 or Corona Virus to the shores of the United States, everyone is encouraged to stay away from large groups and to practice social distancing. Most social events, sporting events, and religious activities are canceled. I have found it interesting how upset my friends and others I know have been about not being able to go out to their choice of activity. I have listened to parents complain about their children having nothing to do and not being able to play with their friends. These are all valid concerns and I understand why this is frustrating for you.

BUT I must say welcome to the life of most people with a disability.

No, I am not being dramatic or joking. The majority of those with disabilities either cannot hold a job or cannot find one. They may also risk losing benefits they need to live independently, such as assistance with home care or personal care if they work. So not going to work is normal for someone with a disability.

You're upset about having nowhere to go but what if you couldn't just pick up and leave even if you had somewhere to go? You have no car to drive and have to depend on others for your basic needs. People are complaining about not being able to make their bills because they have been laid off due to the virus or are unable to go to work because they are not essential. This is a valid and stressful concern, however, this is an everyday concern for those living on a disability payment. Living on disability means that you are living in poverty and if you make additional money your benefits can be cut or eliminated depending on how much you make.

Hopefully, you are practicing social distancing to keep yourself and your family safe. When they announced this recommendation on the news my first thought was "that's my life every day". I have noticed ever since I was little that people distance from me. People hug me less and shake my hand less than my abled counterparts. They always step a few steps away from me.  A study in Britain found that half of the working-age disabled people reported being lonely. That is 3 million people. A study in 2018 by the KFF found that having a disability was a large factor in whether someone feels lonely and isolated. This was true in the US, Japan, and the UK. The same study found that having a disability means you are twice as likely to feel alone or lonely. Think about this for just a moment....you have been living the quarantine life for a few weeks but this could be your everyday life. The only people you come in contact with are medical personnel or people at the grocery store.  

It is sad and isolating for all of us. The stresses of this life can be overwhelming and create additional health concerns if sustained for a long period of time. It is my hope that this small taste of what life with a disability is like will change the abled communities perception of disability. Perhaps now we can talk about more programs to help people with disabilities work, travel, have access to transportation, and more social activities. When this is over don't forget that there are still others in a structural quarantine that need us to continue to work to breakdown the walls that surround them.

Stop Touching My Butt

Recently I was taking a training class for work in a building that was new to me. I was walking down the hall and this person comes up behind me and it happened. Out of nowwhere when I was least expecting it. Someone started pushing my wheelchair from behind. My heart begins to race I'm in panic mode. “Please stop.”

The response I receive is “Just put your arms up it's fine I am going to help you. I don't mind.”

“No thank you I prefer to push myself stop now.” My anxiety kicks in as this not so helpful person does not stop and does not slow down. Why is she not heeding my words. Why is this happening. “Stop now right now.” I grip the wheels tighter throwing all my strength into the effort. The wheel rims burn into my hands and I feel a shooting pain in my wrists. My body is thrown slightly forward, but luckily I don't fall out of my chair. I sit still for a few seconds trying to gather myself. “I can push myself thank you.”

“You should let me help you your arms must be tired.” At this point I am getting annoyed, and I am trying my hardest to keep my composure and my tone light. In my head I'm thinking do your legs get tired when you walk?

“My arms are not tired and I prefer to push myself. Please leave me alone.” I say.

“You don't have to get so upset about it I am just trying to help you. You should take help when it is offered to you.” She huffs away. It takes me several minutes to calm myself from the experience and for the rest of the day I vacillate from anger and fear. First why am I at fault here? I am just rolling through the office and you took it upon yourself to “help” despite me saying very nicely no thank you. What if you were walking along and I just came up behind you and picked you up and started carrying you. Wouldn't you object to that?

Why?

Would it be because I had violated your space? Because I took away your right to choose? Because I assumed something that you may not have wanted? EXACTLY!

I have said this before, my chair is a part of my body. No different to me then my arm, my foot or my butt. When someone grabs my chair without my permission and tries to push me it is like being violated. It is like you are touching my butt. You would not want someone you don't know to touch your butt and I don't either.

I know you are just trying to help but your help is more harmful than you know. It makes me feel unsafe and makes me angry. Why are my rights and wishes not as important as yours? Imagine for just a moment you were at a bar just standing there enjoying your drink or time with friends and a perfect stranger comes up and smacks your butt. You would be outraged and you would probably file some sort of complaint right?

This is the same for me and I wish abled people would stop doing it. Please stop touching my butt.

Are you Angry at God?

I get asked a lot of questions by well-meaning people who want to learn more about disability.  Most of the time I have no problem answering them because I would rather you know then not know.

I am often asked the following: Are you angry at God for your disability?  This question in my mind assumes that I have something to be angry about.  It further goes back to some people's perception that having a disability is more challenging when you compare it to not having a disability and as such I would be angry that I was given something that another person was not.  I suppose that I was given something that other people were not, but I don't see it as a negative.

For a long time the only images of disability I saw on TV or movies was of the angry person.  It makes a more engaging story.  Something that abled people can easily digest, the image of the angry guy/girl in wheelchair who is in some tragic accident.  They are so mad that their life was changed and they make some miraculous recovery or after finding the love of their life they come to change their attitude about their disability.  Like many stories this is just that a story, and may have happened to one person once, but is not close to the reality of life.

That is not to say I don't get angry ever.  I get very angry when people call me "speedy" or "wheels," but that is a post for another day.  I get angry when there is no accessible parking in the parking lot, or when I have to wait forever for an accessible stall and I really have to go.  I swore last week when I was trying to open the door to my apartment building and it was so heavy that it took me three tries to get through.  However, those situations have nothing to do with God.  They have to do with the world around me and the barriers that come with having a disability in the United States.  

Do I sometimes wish my situation was different? Of course!  Again nothing to do with God or my disability.  I wish people were more caring.  I wish people thought more about how their actions impacted others.  I wish people were more accepting. I also wish Luke Bryant was single and interested in dating me. 

My life verse is Daniel 7:9 :“As I looked, “thrones were set in place, and the Ancient of Days took his seat. His clothing was as white as snow; the hair of his head was white like wool. His throne was flaming with fire, and its wheels were all ablaze." (Bible Gateway)

 I read this to mean that God has a wheelchair and probably the coolest one ever made.  (How cool would it be to have a wheelchair that fire came out of?  No one would mess with you then.) Now before you start writing me angry comments, I know this is not what this verse was intended to say.  I would argue that God has a plan for everyone and has thought about all of the ways and content that he will use  to shape us.  Jeremiah 29:11 tells us he knows us and how our life is going to go.

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future (Bible Gateway)

So I have to believe that he put this verse and this inspiration in my path for me to come to a deeper meaning for myself and I don't believe that diminishes the true meaning of the verse but in fact enhances it  If God's plan is not to harm me but to give me hope for the future why would I be angry at a curve that he sent me?  I get to be truly unique and unforgettable in a way that no one else is.

I have to reason that God's plan to give me my disability was part of a plan.   That it has the greater purpose then the minor irritations the world presents to me.  Maybe my purpose is to be a voice for those who cannot speak or to educate those without a disability on what life is like with one.  Perhaps I will not know until I meet the Lord in person.  I may never know and that is alright with me because my life is happy and full.  I am not angry I am blessed.

Kids say the darnest things

So anyone who really knows me knows that I have a heart for children and animals.  I think because they are vulnerable and because their love is pure and honest.  I have always taken the stance that anyone who asks me an honest and fair question I will answer even if it comes from a child.  I feel that education is the only way to combat the ignorance that people seem to have in reference to those with disabilities. 

The other day I was getting out of the car and a young boy I know, who we will call David, approached me and asked without shame " Why do you use a wheelchair?" 

His father stepped in right away before I could respond and said "David we don't ask that. It's not polite."  He turned to me and says "I am sorry we are trying to teach him."

I responded "I'm not offended"
He says "He doesn't understand he doesn't mean to be rude."
I said again, "I am not offended.  He asked a valid question in a very respectful way and deserves an answer." I explained that my legs do not work as well as his so I need the wheelchair to help me get around.  David seemed satisfied with this answer and moved on to tell me about what he has been doing lately.

This issue has been a struggle for me because I am not offended by children's questions and I think it is better to answer their questions then to teach them that they should not ask them.  When you create knowledge and understanding when children encounter someone with a disability or someone who is different from them they are less likely to discriminate against these people.   However, I don't want to contradict or undermine a parent.  I have information that parent does not know, asking a question like David did is not rude.  It is the start of questioning, the start of understanding, the start of acceptance.  If you take that away from a child they will not grow and they will grow up to be an adult who does not know how to seek knowledge and to question the world around them.

 I wonder what would happen if we all took the time to understand those who are different from us?  To learn from them and grow in our understanding of each other.  Could we erase hate and bigotry?  Could we create a kinder world for kids like David?  Maybe the world would be a little safer too.  Who wouldn't want that?  Knowledge is the antidote I know of to hate.

Get Positive Live Positive By Melinda Carver

Recently on Facebook, Twitter, and other social media sites, my friends have been asking for good books to read.  Well, I just finished "Get Positive Live Positive" by Melinda Carver.  First, let me say I am not much for books like this.  I generally read historical texts, biographies, and real crime but something about this book pulled me in.  Maybe it was the bright yellow cover; it could have been the reviews on the back cover that raved about Melinda.


I had some time to sit down and read it last weekend and yes I read it in one day!  I had a tough time putting it down.  Melinda writes in a very easy to follow manner and with simple diagrams.  Her message is one of love and understanding that we all need to hear in a time when everyone is rushing out and trying to achieve with no idea how to do it.



Carver taps into a concept that psychology has told us are true for years.  Thinking positively affects brain chemistry and also your bodies reaction to stress.  This also plays a significant role  in your health (Fiske, 2014.)  I have tried several of the techniques outlined in the book for the past few days and have noticed a marked difference in my life and my attitude.  If nothing else this book brings to the forefront self-care and our need to take put ourselves first more often.

To give you a sample here is my list of positive traits I say to myself.

1. I am beautiful
2. I am kind
3. I am strong

Get Positive Live Positive is available on Melinda Carver's website, Amazon, Walmart, and Barns and Noble.
http://psychicmelinda.webs.com/



Fiske, S. T. (2014). Social beings: core motives in social psychology. Hoboken: Wiley. 

10 Reasons Why being a wheeler is awesome

I know anyone with a disability can relate to this, you are speaking to someone or just going about your regular life, and an abled person says "You are so brave."  This sentence has always bothered me because I am not brave.  Soldiers are brave; they fight with bullets swirling around them.  Firefighters are brave because they run into burning buildings.  So when someone says I am brave, it leads me to believe that they think my life is awful or somehow less than.  This is entirely untrue, and in the spirit of David Letterman I have come up with a top 10 list of reasons why.


1.  Preferred parking


I can also park near the building when it is raining or bitter cold outside.  That is when people who don't need the spaces don't take them.


2. Always having a seat


Think about all the times when you stand in the back of church because there were no seats or waiting for the rides at Cedar Point.  I never have that problem because I have a comfortable chair with me at all the time.   Plus I don't have to sit on nasty bus seats.


3. I have my own roller coaster


Whenever I come to a big down hill, I can just let my hands off the wheels and zoom down.  It's like a coaster all to myself.



4. My shoes don't get dirty


My feet are always off the ground, so my shoes stay cleaner and dryer.  How awful is it when you step in a puddle and get your shoes and socks wet.  Ick!


5.  Being at eye level with dogs and kids


I am at eye level with children and dogs which makes them like me more because I am less intimidating, 


6.   I always have someone to carry my bags in the airport


They have wonderful people at the airport to carry your luggage if you have a disability.  It is so nice not to have to worry about lugging your bags everywhere.


7. I can do wheelchair tricks


I can pop wheelies and hop curbs like a skateboard champion.   The US skateboarding champs have nothing on me.


8.  I can drive a car without shoes on


 In most states, shoeless driving is a big no no.  You know they like it when your feet don't slip off the peddles, but when you drive with your hands and not your feet, it's not really an issue.  Honestly, I could never wear shoes at all in the in the summer and be just fine.  Not that I would do that because I think it's gross.



9.  Shaving my legs is so much easier



It is so much easier to shave your legs sitting down then standing up.  A shower chair is just as important as shaving cream.  You should try it. 



10. I get to see the best and the worst in people every day



I have written many times in this blog about weird or crazy things that people say or do around me.  That does get annoying, but they also hold doors open for me, push me through the snow, and help me get my wheelchair into the car. 



See my life rocks you just never knew!   

Let the children come to me

Luke 18:15-17

 "One day some parents brought their little children to Jesus so he could touch and bless them. But when the disciples saw this, they scolded the parents for bothering him. Then Jesus called for the children and said to the disciples, “Let the children come to me. Don’t stop them! For the, Kingdom of God belongs to those who are like these children. I tell you the truth, anyone who doesn’t receive the Kingdom of God like a child will never enter it.”

I have always loved this passage because I love kids, but also because  I love the innocence of children.  How they just blanketing accept things and the love they show to everyone regardless of skin color or what you wear.   Mostly, I love children because they ask the questions adults want to, but don't because society has told them that it is not appropriate. 
Yesterday I was a wake for a family member and to be honest I hate funeral homes.  They are sad and dark, and smell funny.  .  However, God blessed me with the company of a 4 year old who was completely fascinated by my wheelchair. 

She started the conversation with me by leaning directly into my face and saying "get out of that chair."
 I said "I can't." 
The little girl said "get up."
I said "I can't my legs don't work as well as yours."  She tilled her head at me a little and smiled as if that made perfect sense.  Then she says " Are you a mother or a sister?"  At this point I am positive that her father wanted to crawl in a whole and die. 

Now as this was happening her dad was sitting close by tell her to stop asking me questions and to stop being rude.  I turned to him and said I'm ok don't worry it's ok.  Please understand I get that this little girl's father was trying to protect my feelings and that is really nice, but I don't need him to do that because that little girl was just trying to understand something new.  I wanted to answer her questions so maybe one day when her classmate uses a wheelchair or her co-worker or even a boy/girl she likes has one she might think it's cool.

She spent the entire time pushing my wheelchair back and fore through the entire wake and I have to tell you it was the best wake I have ever attended.  My point is that just like Jesus said we should all approach life like a child.  Ask the question, seek to understand what you don't know, and love as if everyone is your equal.  Take a lesson from a little girl who just wanted to check out the interesting lady in the wheelchair.