THE BEST RESPONSE

Those of us with disabilities spend our entire lives explaining ourselves. Answering questions. Advocating. Being disabled can be exhausting. being cared for by others. while greatly appreciated, is probably the most exhausting aspect of having a disability. 

We know all of our quirks. Reminding us of the negative only serves to make us feel as if there is something wrong with us. We begin to feel inferior. We know that we can be annoying and bothersome at times.

 We know how we like things done in relation to our care. Every person with a disability is unique. If two people have the same disability what works for one person may not work for the other person. Clear communication and the ability to listen and respect one another are the ingredients for a good client/caregiver relationship. 

Our caregivers have their own lives and issues. They show up, meet our needs to the best of their abilities and go home. The reality is caregiving is a job like any other job. Our caregivers are not meant to be our therapists.

If you are a friend or family member of someone with a disability, you want to help make that person's life easier, better but you are not sure how.

Here are my suggestions:

Let the person talk as much as they need to.

Listen.

Offer encouragement

(Here's the biggie.) Let them know you understand/

Two simple words. I understand. These two words validate a person's feelings. These words let the person know you are listening and that you heard them.

This applies not only to caregiving situations but to many situations a disabled person may encounter.

If they didn't get the job they were hoping for don't say, "You were too old to get the job anyway."

A more appropriate response is, "That sucks. I'm sorry. I know you are feeling down right now. Is there anything I can do to help?" 

Independent living is hard. Relying on others for our basic needs is hard. 

Be there if  we need to talk/or just vent

The best response?

I understand.

THE PANDEMIC EFFECT

How did the pandemic affect those of us with disabilities? What are the lasting effects of the experience for people with disabilities?

I can only speak for myself but I would not be surprised to learn that many of my disabled peeps have experienced many of the same issues and feelings that I have over the past year and a half.

When it was announced that there would be a two-week quarantine I thought to myself, "No problem. I can do this. I will be back at Happy Hour by St. Patrick's Day." 

When two weeks turned into months, then a year, I felt like I was living in a box. News reports of the rising number of deaths were frightening to me. I require care. My caregivers and I could not social distance. Would I catch Covid?  Would I be one of those who would be forgotten or denied care, like so many of the elderly and disabled people I read about if I contracted the virus?  My fear, anxiety, depression, and a little paranoia were amped up. to the max. I am disabled. I am on Medicaid. Would those two factors mean there were two strikes already against me?

Even though social media and Netflix were a godsend I still felt isolated. My room began to feel like a box during the winter months. I needed conversation. I needed to feel connected. I didn't.

I gained weight because I saw no end to the pandemic. I found enjoyment, comfort, and friendship in food. Make that junk food. 

Everyone gained weight during the pandemic right?. It's harder for me, or any sedentary person, to lose weight. I never want to be the reason someone hurts their backs, I have done a good job of keeping my weight down my entire life. During the pandemic, however, I just did not care.,

When news of a vaccine was announced I could not wait but. I was concerned about potential effects. The length of time it would take for me to get it. I felt horrible the day after getting the second injection. Considering what the alternative would have been it was worth it.

Nothing has really changed here yet. I still have to meet visitors outside while social distancing despite the fact that my potential visitors have all been vaccinated. I wonder if the world will have to mask up forever.

Twenty years ago the idea of a virus such as Covid would have been the plot of a sci-fi movie. For the last year and a half, it's been our reality.

I hope we never forget the lives lost, and the medical professionals who risked their lives to save so many. 

The pandemic has left me with the knowledge that anything can happen. A virus stopped our world in its tracks. Be kind. Be grateful. No one is immune to anything.  

We need to stop being so selfish. We need to care. Not only about ourselves, but about how our choices and actions affect those around us. None of us live in a vacuum.  We are all connected to one another. If the pandemic taught us nothing else it most assuredly taught us that.

 

GET MY WATER WINGS

From the ages of eight to approximately eighteen I attended Camp Daniel Boone.  A sleep-away camp that was located near St. Charles, Missouri.

I went to the camp with two of my friends.  I remember getting on the bus, not wanting to go.  I never liked to be away from home. (Let's be real. I needed a lot of my parent's time and attention. They needed and deserved the ten-day break my attending camp gave them.)

My mom thought that if I went with friends, I would have a good time. She was right.  The problem was the camp director had other ideas. He thought that the camp was a good place for me to make new friends.  

More often than not, I was put in a cabin with girls I didn't know.  I only got to see my friends at mealtime or during the evening programs. I was so homesick.  The camp director would end up calling my parents to pick me up.

When I was in a cabin with my friends, I had a great time. I was (and still am) shy.  The camp director's focus should have been on making my experience at camp a happy one every year. I could have made new friends while being with my old friends. 

 I enjoyed making crafts and nature walks.  It didn't matter that my effort wasn't very good; I still liked trying to make whatever the craft was. The camp was the first time that I observed a frog being dissected. I felt sorry for the frog. What had he done to deserve such a fate? The camp was where I heard Poe's The Telltale Heart for the first time. Pretty creepy for the wimpy little girl I was back then.

We were forced to sleep outside under the stars in sleeping bags for one night during our ten-day stay. Ahh, the memories. The ground was cold and hard. I woke up with leaves in my hair. The outhouse? I used it once. That was enough. I waited until we were back in the cabin the next morning. 

I brought home a souvenir from camping out.  My mom found a half-dead tick in my hair when she was washing it after I got home. She had to cut my hair to get it out. The next year my mom sent a note asking that I not be made to sleep outside. I was not the only one. Turned that there were other kids who felt the same way that I did. We camped out inside from that time on.

I was riding a horse with a counselor when the horse stepped into a hole. We both fell off the horse in slow motion. Gotta give props to that counselor. He did his best to keep me from getting hurt. They did not make me ride the horse after that.

I was a little fish. I loved swimming. Put a plastic ring around me and I was off paddling. (I also probably swallowed half of the water in the pool, but that's not the point.) I loved paddling around, putting my face in the water to blow bubbles, and seeing how long I could hold my breath with my head under the water. 

My best memory of being at camp, hands down, is getting to use water wings in the pool. I was swimming like everyone else with water wings around my arms. They gave me such a sense of freedom in the water I had never experienced before and would never experience freedom like that again no matter how many inner tubes,  life jackets, (the worst), or plastic rings I would try in the future. 

I may not have liked everything about being at camp. Water wings, however, meant; everything to me.

  

YOU HAVE THE POWER

Sometimes I find the truest posts on Facebook. Our words have such power/ Our words can bring comfort or tears.  They can tear down or they can lift up.

Your kind word, hug, or smile might be the only one that they get today. It's a cool feeling to know you were the reason someone smiled.

Being elderly or disabled can be lonely.  Leave someone better than you found then. A kind word from you might make all the difference. They will remember your words long after you have forgotten them. You have the power. Use it wisely.

 

ABLEISM BEFORE IT BECAME A THING

Merriam-Webster defines ableism as discrimination or prejudice against individuals with disabilities. 

I grew up before people with disabilities had rights. I grew up feeling inferior in this non-disabled world.  (I'm not gonna lie. I still do.) .

Read on to find out what life was like for me before ableism became a thing.

There was a small chocolate shop near the house where I grew up. There was one step to get in the store's front door. There was no way I could navigate the step in my powerchair even with assistance from my PCA. A store employee unapologetically informed us that that door was the only entrance into the shop. He did not seem to care that he'd lost a sale. I think he was glad to see us leave. (This incident occurred after 2010. This establishment had obviously never heard of the ADA.)

A disabled friend with CP  had been mainstreamed before mainstreaming children with disabilities became the norm.  I knew she was embarrassed by me. When a non-disabled friend of hers suggested that we all go out together our friend with CP adamantly refused to include me.When she was planning her wedding she told me, "You wouldn't want to be in the wedding anyway. It's a lot of work."  Again she chose her non-disabled peers over her disabled peer with CP. People with disabilities can be ableists too. (I know you are thinking that I should get over it. We were young. I agree. However, sometimes the hurt runs too deep. No matter how much I might want to let it go. I can't.)

Before I entered grad school one of the deans told my mom that the school did not want me but that my grades qualified me for admission.  The school had to accept me. When it was time for me to graduate that same dean told me that I would be last in line walking into the auditorium. I could not be in the line alphabetically with the rest of my class. This situation was soon rectified by a professor friend of mine. On graduation day I took my rightful place in line with the rest of the students whose last names began with G.

One of my internships was at a children's hospital. My boss's goal was to get the children's hospital, where I had been a patient to hire me. That hospital did not have a permanent social worker on staff at the time. When my boss learned that the hospital would not hire me, due to my lack of work experience she needed my internship after one semester. It was supposed to have lasted two semesters. For the remainder of my time interning at the hospital, I was given very little to do even when I asked for more duties. She gave important jobs to other students. I was left with setting up clinic appointments.

There was one job I really wanted. With the assistance of a job placement specialist, I went for it. I wanted to be a greeting card rep for a well-known greeting card computer from home. After learning that the rep for my area was retiring and that almost everything could be done on a computer, I called the current rep. She didn't let me say very much. She told me there was no way I could do the job. The woman was in her nineties. We'd never met. No matter how much I assured her that I could handle what the job entailed. I could not change her mind.

Do I think ableism will ever be eradicated? No, That's just the way it is. The ADA helps fight ignorance and discrimination against people with disabilities. They don't have to fight alone anymore. They can speak up. They can tell their stories. They can make people aware.

THE MANY FACES OF ME

I was not always the nerdy, mismatched, lounging pajama-wearing CPer you see in this photo who views the world via the screen of her laptop.  This woman dreams of traveling to faraway places. She dreams of fitting in. She dreams of being truly accepted for the awesome person she is.

There was a time when I dressed like this. My clothes matched. My hair was combed. My double-pierced ears always sported earrings.  This woman went to the mall, to the movies, and spent many hours doing volunteer work. This woman dreamed of making a difference. She wanted to help others with disabilities. She dreamed of changing the world, or at least, a small part of it.

This woman was an author. She dreamed of teaching children that it was okay to be different. She envisioned turning her children's book into a series. While that did not happen she fulfilled her dream of becoming an author.   https://busyworldofbiancabear.blogspot.com/

I don't show this side of myself very often. I have to know you really well. I have to trust you. When you have a disability, people make judgments about you, They make assumptions about you. This woman is funnier on the written page than she is in person. It's safer that way. She might look foolish. What would people think? This woman dreams of having one more day like this with her besties. A day to be silly. A day where no one cares. A day of laughing until she can't catch her breath. A ]day to just be happy. She'll even wear a feather boa.

 

WHAT'S RIGHT WITH ME?

 From the moment we are born until we take our last breath those of us with disabilities receive negative messages. Not only from those closest to us but from society at large. 

Back in 1957 when I was born I was not weighed until 2 days later. Was I too insignificant to be weighed right away?  Were they waiting to see if I would survive?  (My first negative message.)

When our parents finally receive our diagnosis they are told all the milestones we won't achieve in our lives. While we may not even be two years old, our time on Earth, however, has been filled with negative messages.

 Growing up we fight. We fight for a good education, a good job, a good life. As hard as we try most people still only view us as our disability. They don't see the person we are. 

If we are lucky enough to find people who see the real us we cherish them. We try to ignore that little voice in our head that keeps telling us, "This won"t last forever, you know. Why would such an amazing person want to be friends with you?" 

We're told we do too much. We talk too much. We cry too much. We do not know how to let words go that hurt us. We need to be quiet.

Those of us with disabilities have been told what's wrong with us our entire lives. What we need to change about ourselves to be okay with other people. We're told why people don't like us. 

The pressure of trying to conform is exhausting.  (I am not the only person with a disability who has voiced these feelings. I've read similar posts on social media .)

Instead of bombarding us with negativity, give us more positive messages.  One positive message could make a big difference.