Personal Stories – Page 15 – Disability Justice and Violence Prevention Resource Hub

COVID and Being Medically Fragile with a Disability

graphic including masks, gloves, hand sanitizer and other PPE

Hi, my name is Meishy and I live at home with my mom, Cheryl. She is helping me write
this because I am a quadriplegic and unable to write and dysarthric and unable to speak. However, I want to tell you about my experiences of surviving in the world of Covid 19. I know all of you are having to survive this as well, but I am on a ventilator 24 hours a day, so if I get this virus, I have a 99% chance of dying, so that is scary to me. I want to tell you about all the things people have done to try to protect me and keep me safe so you know what people can do to help keep you safe too.

I have not left my room since February 18 of last year when I went to see Dr. Tolley at the pain clinic at Riley Hospital. That was right before Covid burst on the scene. In March I was told by my doctors that I needed to stay in my house and not leave for any reason; that my mom, who is a nurse, and my nurses would need to take care of any problems at home. The doctors made sure that I had all the medications that I needed (antibiotics, meds to thin my mucus, etc.) were on hand so they could be started if I needed them so I did not have to make a trip to the emergency room. I am a palliative care patient because I no longer have any veins that are good enough for IVs, so all my antibiotics must go through my stomach tube.
I have needed these medications a couple of times during my isolation period, and it has been wonderful to not have to go to the hospital to get them. My doctors have also been great about doing all my doctor visits via virtual visits. Mom holds the phone up and we talk with the doctor about what has been happening with me and we are able to do our appointments that way. It has been amazingly effective.
Another important thing is that the only people that I have seen since I left the house are my mom, my two nurses, Steve and Shannon, my therapist Jaime, and my aunt Susan. All of them do things like wearing masks and gloves when they get close to me if they are not feeling well. Mom even had to take care of me in November when she had Covid and managed to keep me from getting sick. She wore her mask, her gloves, and washed her hands a lot. She also kept herself in the other room except when I needed something bad, just so she could keep me safe. I did not get sick at all.
I cannot say it has not been a little lonely, but I have my iPad and my DVDs to keep me busy and happy. Those are the things that I really enjoy. I plan to keep on doing what I am doing for as long as I need to do it, and I hope you will all do the same. Please remember that masks and social distancing do work. I am proof of that and stay safe.

Woman with brown skin and long black hair, wearing a pink dress with a fierce look on her face.

About the Author:

Meishy was born in Philadelphia and lived in a foster home there until she met her adoptive mom. They flew home to be a family on 9/20/2001, right after the planes started again. Meishy attended Shelbyville High School. She loves all things Disney, but especially the princesses. She spends her days watching movies and surfing the internet.

Taking Up Space

*Image description* Child in a pink wheelchair with blue jeans and a pink shirt that reads ‘Warning! I always win at musical chairs’ with her hands atop her head, and her mouth open wide in a silly face.

Too much. Too loud. Too vocal. Drawing attention. Advocating loudly. Never satisfied.

In the space of a few weeks, these words became loud in my mind. Back to school meant lots of conversations, text, and e-mails. Needs. Disagreeing with people, and working really hard to come across diplomatically. My mind bent over gasping for air while trying not to throw up. Not because it was bad. Or, received poorly. But, because advocating is hard. And, scary. Necessary. While invoking fears that if things are pushed too hard, too loudly, or we just take up too much space, my children could suffer the repercussions. Part of me wants to apologize for speaking up at all. Making waves. I can feel it. It’s too much space out of a whole lot of kids with needs. We’re not staying in our area.

A trip to the park buzzing over the excitement of a new swing. One I can roll a wheelchair up on, and watch my daughter lean back and smile in the breeze. I pull up, and immediately feel all the blood rush to my face. They’ve built a swing. A whole separate area for kids with disabilities. I can’t believe it. How did this happen? So I speak up. I arrange meetings and have hard conversations. I listen, and try to understand. I tell them what I want, knowing the cost is astronomical in a Midwestern city that has lost its factories and is struggling to survive. And, I know, I’m taking up too much space in the financial agenda of a city.

We’re out. My daughter is excited. She makes her noises. Grunty and screechy. Over and over. It’s loud. People move away or stare. They don’t know how to respond to it. She’s just communicating. We’re used to it. But, all of a sudden, I know. Too much space. We are occupying more than our share of the noise level.

Sunday morning. Front row during worship because that’s where my daughter wants to be. She can see all the instruments. The singers. There’s room to dance. And, a few times, she makes her way on stage and just sits there, watching everyone, dancing, and sometimes even singing. I breathe deep and purposeful to slow my heart, thankful I can’t see anyone behind me. She darts quickly to make an attempt at grabbing the guitar, and I sprint on stage and grab her. This sort of thing repeats a few times, amidst her other antics of trying to get me to hang her upside down, do flips, and use me as a jungle gym. I can feel it. Sweat is starting to pour out of me. We’re taking up more than our share of space. Drawing attention away from the things people want to be focusing on.

The tears are no longer staying just behind the surface. They spill out onto my cheeks. I’m reminded how long it took for people like her to be allowed any space in society at all. Their space used to be one that hid them away. Gave them less area than was theirs. Took a family, an education, self worth, outdoors, human interaction, dignity, and at times, their lives.

I drop her off at Sunday school, and slink into the back of the church. The weight of the past week of advocating, and feeling too much settles in. I’m self conscious from the worship time, and uncertain whether bringing her in for it, no matter how much she begs, is truly the right thing to do. Our pastor stands up, talks a little about the set up of Sunday school, who goes where, when. And, out loud, in front of everyone, welcomes my daughter by name to be part of worship as she sees fit.

It’s okay for her to take up more space now. To grab back what was denied to so many before her. To loudly declare that she is alive, and has worth. This is her time. Her place. And, we will be here, taking up more than our share of space.

About the Author:

Image Description: Andrea has long light brown hair and is smiling broadly. She is wearing a white top, a silver necklace, and dangling earrings. Trees are in the background.

Andrea Mae is a mom, advocate, writer, and special education aid. She spends time caring for her three children: juggling therapies and specialists, reading, hiking, kayaking, hammocking, eating Reese’s, and being followed around by her dog-Daisy.. She is active in her neighborhood and community, advocating for the rights and needs of people with disabilities, and speaking on the topics of disability and theology. She is currently obtaining her degree in special education.

How I See My Bipolar

Video Description: Against a dark background, white finger-like things appear at the top. As the music plays, the finger-like things crawl down the screen.

BiPolar to me feels like someone is reaching in my mind with their fingers and messing with my emotions, motivations, and behaviors.
The dark represents my depression, and the light represents my mania.

The base of the Processing code was written by Dan Shiffman, http://patreon.com/codingtrain, in his forward kinematics lesson.
The music “Dark Trailer” was downloaded with a free licence from Adobe Stock.
The rest was written in Java, Processing, by me, Jayson Powers.

About the Author: Jayson Powers is a mathematician at heart who enjoys computer programming. He lives in Muncie, IN, where he is the primary caregiver of his wife with cerebral palsy.

Picture of Jayson Powers, a white man wearing glasses and a COVID mask

Using Art to Bring Awareness to Human Trafficking and Domestic Violence

Three roses in front of a bigger flower that is difficult to see because of the black back ground.

The black background remains, but the flowers are in full bloom. The previously hard to see bigger flower is now a brilliant blue. The word, HOPE" is written above the blue flower. — The black background remains, but the flowers are in full bloom. The previously hard to see bigger flower is now a brilliant blue. The word, HOPE” is written above the blue flower.

*Please Note: IDJ does not align with any one religion, faith, or belief system. Instead, we offer a platform where people with disabilities can express their diverse experiences. Content contains Gina’s story about what happened to her when she was trafficked. Please take care when you read about what happened to Gina.

About the Artist: Gina Hope

I’m a survivor of human trafficking. During that time my spinal cord was injured (leading to constant severe pain & 17 surgeries involving my cervical & thoracic spinal cord causing a whole host of obstacles) and domestic violence (leading to rods & screws in my lower back). But despite how difficult each day & sometimes each minute is God has & continues helping me see good that can come of my circumstances & He’s never allowed me to give up. Around 7yrs ago, a friend met me every week for a year encouraging me to follow my dreams – he convinced me that I was not only capable but that I could accomplish amazing feats others could not because of the insights my experiences have given me. So, I set out to begin the sea of paperwork to start a 501c3 which is Living Legacy Of Hope. I’ve wanted to be an artist my entire life; but I’ve never been able to get on canvas anything close to what I envision.

However, I sought out to learn to paint as I had the idea of painting a Hope Card Collection. God helps me overcome obstacles such as difficulty holding onto the paintbrush because much of my hand is numb. This is the first painting I’ve been able to complete that actually looks like what I envisioned.

This particular painting came out of a very dark time as I had just been viciously attacked (enter rods & screws). The front of this Hope card is the Silhouette of Hope with the Silhouette of the opening Rose while the back is in full color with the Rose & HOPE brightly shining.

I’ve given this as a Sympathy or Inspiration card to remind the hurting there is always Hope = one of the most important things I say when speaking is that we can overcome no matter what we endure on this earth – although there might be dark times we are never without HOPE.

https://livinglegacyhope.wixsite.com/hope