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.
Joyful sweep is when the body is sweeping off of the surface. When you look at the image you cannot see the full body, but you see different pieces of limbs moving throughout the surface. There are small pockets of paint, mostly primary colors, coming together and depicting a human figure moving softly through the surface on a white background. Pencil markings are scribbling throughout the surface in the background. The figure is playing some type of sport almost as if he is playing soccer.
Freedom Dance
Freedom Dance is moving through the atmosphere without the effect of gravity. White and yellow are the most dominant colors throughout the surface. These colors create warmth throughout the painting.The figure is far to the upper right side of the canvas. Depicted in tan and maroon, the figure arches upward from the bottom right corner of the canvas towards the upper left corner. The figure stands on one leg with the other leg reaching out the side and arms stretched getting ready to fly.
Développé
Développé is when the body is transferring all the energy from within to the surrounding spectators. The delicate figure is mostly surrounded by a white surface. The figure with her leg stretched upwards is depicted in a peach and orange tulle skirt that explodes outwards to express the movement of the dancer. The main focus point of the painting is the center where all the movement originates. Her arms and hands are stretched upwards as if she is reaching for the sky.
About the Artist: Johnson Simon
A man with medium brown skin, with short black hair, wearing glasses, and smiling broadly in front of a white background.
I have always been interested in body movement and when an opportunity was presented to me to attend a dance recital exhibition nine years ago on the Western Michigan University campus, I was excited to attend. Viewing the dancers and their freedom of movement inspired me to display movement in my painting. I was stimulated to create my first dance focused expressionistic painting. Dancing is to me, the art of moving lightly and quickly with the skill of communicating my emotion. As someone with a disability, movement impacts me on a daily basis. In order to help gain more knowledge of motion and movement, I used several sources of movement for research and to enhance ideas. I watch several videos of dancing to help in determining the type of movement I wanted to present in my painting. I studied the movement of people: walking, running, swimming, and sky diving. I then had my own walking and stepping up and down stairways videotaped. I discovered that my walking has a rhythm to it. To further enhance my study of movement I attended several dancing classes to sketch the dancer’s movements for effect. My painting is a representation of me dancing. I am able to make broad and sweeping motions with my paint brush and transfer that motion and feeling of movement onto the canvas to express myself. In my artistic work, I am able to move freely about without limitations. I use bright colors to represent the body movement throughout the surface.
My artwork is a way for me to express or transfer how I would move freely and uninterrupted. I can run, walk, jump, and I can dance without being bound to limitations when I paint. Zm and draw. I believe the paint brush is an extension of me and represents my idea of movement on canvas.
*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.
The Fireweed Collective along with the Spoonie Collective out of Los Angeles presented a webinar titled Disability Justice 101. The Fireweed Collective offers mental health education and mutual aid to help change the harm of abuse and oppression created by the mental health system. They are working with the Spoonie Collective which is a group of LGBTQIA+ individuals with disabilities, neurodiversity, and chronic illnesses. The Spoonie Collective offers in-person and virtual workshops and panels on the intersection of race, gender, disability justice (DJ), feminist theory, and more. This webinar covers basic terminology, disability theory, disability justice vs disability rights, disability movers and shakers, disability justice in the time of COVID-19 and becoming a DJ accomplice and is hosted by Tasha Fierce and Laurent Corralez.
Tasha describes themselves as queer, Black, disabled, nonbinary femme who is a writer, artist, crisis doula, facilitator and mystic. Their website is tashafierce.com. Laurent describes himself as a physically disabled, trans, latinx community organizer and zinester.
Definitions
The first item discussed was defining Disability Justice and what it looks like. A picture was shown to define DJ. It had the following words: intersectionality, leadership of those most impacted, anti-capitalism, cross-movement organizing, wholeness, sustainability, cross-disability solidarity, interdependence, collective access and collective liberation. Sins Invalid states that DJ looks like valuing each body and the power it yields. It holds that each body is unique, essential, has strengths and needs that must be met. Bodies are powerful because of our complexities not despite them. Finally, DJ recognizes that all bodies are confined by ability, race, gender, sexuality, class, nation state, religion, and more, and we cannot separate them.
The next few terms that were defined included ableism, disability and invisible disability. The Center for Disability Rights defines ableism as a set of beliefs or practices that devalue and discriminate against people with disabilities. It assumes that people with disabilities need to be “fixed.” The definition of disability is taken from Sins Invalid. It states, “We define disability broadly to include people with physical impairments, people who belong to a sensory minority, people with emotional disabilities, people with cognitive challenges, and those with chronic/severe illness.” Some disabilities are considered invisible since they are not overtly obvious. They are defined by The Center for Disability Rights as, “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.”
The final 3 terms defined were chronic illness, neurodiversity and trigger. A chronic illness usually refers to a health condition or disease that has persistent effects, comes with time, and lasts more than three months. Psychology Today defines neurodiversity as the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome. This is not a universally accepted definition but is gaining support from science. Finally, a trigger is a stimulus that causes feelings of past trauma. It may illicit feeling of overwhelming sadness, anxiety, panic, or flashbacks.
Disability Theories
After these definitions were explained, several disability theories were shared. These theories attempt to illustrate how a disability can affect different aspects of life such as energy, stress, and vulnerabilities. The two theories that stood out were Spoon Theory and Fork Theory.
Spoon Theory was developed by Christine Miserandino to explain how disability or chronic illness can reduce mental and physical energy. According to this theory, a person wakes up with a certain amount of spoons for the day. Each task performed, as well as pain and fatigue, takes away a spoon. When all the spoons are used, a person’s energy is gone. The idea is that the pain, fatigue, or daily struggles can use spoons (energy) that ordinarily could be used on other tasks.
The Fork theory is a corollary to the Spoon Theory meant to help neurodivergent and neurotypical individuals explain how stressors affect their disability. In this theory, a fork is any stressor that is stabbed into an individual. Stressors can be big or small. An individual’s fork limit is different each day. When the limit is reached, the next stick no matter how big or small will set the person off. This explains why a little annoyance can evoke a disproportionate reaction.
Disability Rights vs Disability Justice
It is important to understand the difference between Disability Rights and Disability Justice. Disability Rights has to do with working within the legal system to ensure personal rights. To be able to access these rights the person with the disability must know that they are entitled to the mandated right and may have to fight for them. The claim to fame of the Disability Rights movement is the Americans with Disabilities Act, or ADA, of 1990.
While the ADA is a legal solution, it does not address societal attitudes towards people with disabilities. Collaborators of DJ movements understand the ableist supremacy and white privilege that has been created with respect to other systems of oppression. It is commonly acknowledged that people with disabilities are treated as disposable. The machine perpetuating these attitudes must be dismantled. This is where Disability Justice comes in as it seeks to honor people’s access needs and is not performative. DJ seeks equity in all areas of life and society.
Movers and Shakers
There are many movers and shakers that have played a part in the Disability Rights and Disability Justice movements. Here are a few that the presenters shared. First up was Sins Invalid. This project grows and features artists with disabilities centering on artists of color and LGBTQ/gender-variant who have been historically marginalized. They work to shift the paradigm of what is “sexy” and “normal.” The second Organization mentioned is Disability Justice Culture Club. It is a house in East Oakland where persons with disabilities who belong to the BIPOC community hold events, meetings and meals.
The Disability Visibility Project was the third organization mentioned. This online community creates, shares, and amplifies disability media and culture. They believe narratives from people with disabilities matter and have created media from oral histories if those with disabilities. They also publish items from the perspective of people with disabilities that have to do with ableism, intersectionality, culture, media and politics. Next to be mentioned was the Deaf Queer Resource Center founded by Drago Renteria who is a Deaf queer/trans activist. It went live on the web September 1, 1995.
The Kindred Southern Healing Collective was established by people of color in the southern United State after hurricane Katrina. It was in response to trauma, violence and social conditions in the south. Members created Good Medicine, a recording of interviews with southern healers and activists.
The final mover and shaker highlighted was The Los Angeles Spoonie Collective, a group of individuals with disabilities, neurodivergent and chronically ill LGBTQIA+ members. They have programs which supports this community. The Limitless Letters Pen Pal Program pairs incarcerated LGBTQIA+ individuals with pen pals. The collective’s Care Web website which tracks members needs and how members can help one another. They also provide workshops and panel discussions on the intersections of race, gender, and disability, disability justice, feminist theory, and more.
COVID-19 and Disability Justice
Disability Justice 101 concluded with the effects of COVID-19 on the disability community. The pandemic has brought to light systemic inequities including the brokenness of our healthcare system, a lack of support for the unemployed and the failure of the nuclear family. Officials and politicians have also called on the vulnerable to be sacrificed. People with disabilities have been deprioritized in triage, have been put last in line for ventilators, are disproportionately given DNR status, and have had their quality of life devalued. Throughout the country there have been letter writing campaigns to make healthcare institutions value and treat individuals with disabilities as they would an able-bodied person.
Historically, marginalized groups have helped themselves through mutual aid. This is a broad term that can involve mercenaries or anti-government establishments, but for disability justice’s purpose it is described as coming together to meet basic survival needs that the system cannot or will not provide. Mutual aid is a form of political participation to care for one another and change political conditions by building new social relations that are more survivable. There were three types of mutual aids given, promotion of self and community care and health prioritization, growing anti-capitalism, and care networks or webs.
Becoming a DJ Accomplice
Finally, there was a discussion on three ways to be a disability justice accomplice. The presenter acknowledged that this is not an exhaustive list. First, check your privilege and use it. This may look like standing up to discrimination (seen or implied) within your social group or place of employment. The second way to act is to evaluate and use the skills you have to empower or help someone with a disability. For example, if you are a lawyer, help or connect someone who can help a person navigate getting on disability. Lastly, build a mutual aid map. This is a visual representation of how different groups and individuals are helping each other.
People with disabilities face many challenges. Practicing and promoting disability justice is essential to empowerment and reducing marginalization of the community of people with disabilities. The Spoonie Collective did just that through their Disability Justice 101 webinar. They defined what disability is and the many kinds of disabilities. Several theories were explained to conceptualize disabilities and then a discussion of disability justice and disability rights. The webinar concluded with illustrating the disparity of those with disabilities during the COVID pandemic. Society needs more programs like this with greater visibility to de-marginalize people with disabilities.
Picture of Jennifer Milharcic wearing a pink top. She has an open smile and short brownish hair.
(Picture of Jennifer Milharcic wearing a pink top. She has an open smile and short brownish hair.) Jennifer Milharcic has Cerebral Palsy and is an independent contractor with the Indiana Coalition Against Domestic Violence and Indiana Disability Justice. She loves to hang out with friends and her dog Becca.
