A sunflower blooming in the middle of a dried-up field.
Hi! My name is Angelo Edwards and I’m a resident at a healthcare facility (nursing home) in Muncie, Indiana. Here is a little background information about myself:
I had a single car accident in October 2011. I’ve been in and out of nursing homes the last ten years. I have about a total of about five years living in the nursing home and the other five I was able to live at home with the assistance of caregivers and nurses coming to my home. The first time I came to the nursing home, I was a resident for almost three years.
Even at that time I had to become my own advocate and make phone calls and connections trying to find a place that was wheelchair accessible so I could try to go home. At that time I was in really bad shape but was receiving therapy to get myself stronger and as independent as much as possible. It did take a lot of hard work and a lot of phone calls but I was finally able to find a home that was wheelchair accessible and big enough to bring my family back together under one roof.
I was so excited to be going home. At this time I was 38 years old. All the way up to the morning that I was to leave, things still weren’t in order. None of the equipment I needed immediately at home had not been ordered by the caseworker of the nursing home. A phone call was made to every place dealing with equipment to deliver whatever they had. I ended up with a old but decent bed, a hand pump Hoyer lift, a bedside potty chair. This wasn’t good because I couldn’t support myself to use the bathroom unless the chair was placed over the toilet. We had to use the Hoyer sling to hold me over the toilet. The bed did lift at the head and foot but not enough to sit up.
Fortunately, an electric wheelchair had been given to me so I could use the other money to be able to get a few other nicer things like a better Hoyer lift and things to help me shower In the end though, I had to resort to getting bed baths.
I had to return to the nursing home due to a lack of staffing in the home healthcare field. Indiana Disability Justice asked me how I feel about living in the nursing home. All that I can say is I’m surviving.
I don’t know how many times I have had to call the Director of Nursing (DON) to go over the same BS concerning a lack of care I and others receive. I’m set to take a shower twice a week or as many times as I supposedly want, but that doesn’t happen. Out of the last eight scheduled showers, I have had three. This has really been tough on me because I have always been anal about my hygiene.
I have wounds from not being turn from side to side every few hours. I have to use a wound vac machine to help with the healing process of wounds, but the machine isn’t properly cared for. The wound vac is scheduled by doctors orders to be changed every Monday, Wednesday and Friday. As I am writing this, It’s almost 11pm Tuesday night, and it hasn’t been changed yet. It hasn’t been changed since Saturday. This could cause my wounds to not to heal correctly or get them infected. I also have other wounds and sores that are not being treated properly. Fortunately, I have the opportunity to go to an outside wound center every two weeks for intervention. By the time you read this, I would have had to be placed with a colostomy bag because of certain things not being done properly or regularly.
During May of 2020, I got COVID in the nursing home. I was placed in the hospital for nine months. While I was fighting for my life, I heard my things at the nursing home had been gone through. Sure enough, when I returned I found some of my things were missing. I met with the old director, the new director, and the case manager. After more than a year later, nothing has been replaced. My wife repeatedly says niceness doesn’t get you nowhere nowadays.
I have called the state to address these issues.
I have had friends contact the state. I have had family contact the state. All the results being the same: nothing being done.
They say the root of the poor quality care is there are so few aides. I appreciate the aides that do their jobs well. I don’t know what we would do without them. I’m so blessed to still be able to speak out about my treatment I can only pray for those who can’t
Update on the Author:
Angelo Edwards first shared his story with IDJ at the end of 2021. As of June 2022, Angelo reported that after two years, his wounds have almost healed. The staffing at the nursing home has been a bit more consistent. Angelo is actively seeking getting out of the nursing home in order to get back to living his life! He is coordinating with agencies, friends, and family to do this. He can’t wait, and hopefully he will be in his new place by September! Angelo also happily reports having his first grandchild. He thanks God for helping him survive the nursing home.
There are many ways to cope with anxiety and depression. There are many ways to manage them. Courtney Parker shares a story and her artwork.
Roxy- a golden retreiever, sitting in the middle of a living room, looking happy. Her fur is completely golden.
This is my dog Roxy. She is a golden retriever. She was nine years old when she passed away. She was my very best friend before I met Brian, my partner. She wasn’t a trained therapy dog, but she was a big support to me and helped me with my emotions. I have severe anxiety and depression so day to day living can be very stressful sometimes. I love and miss Roxy everyday.
A drawing of two birds. Onve is a red cardinal siting on a branch with green leaves. The other bird is a blue jay sitting on a leafless branch.
Courtney also deals with her anxiety by drawing. She draws everything from imaginary creatures to animals to portraits of loved ones to Biblical imagery. The above picture is of two birds sitting on two brances.
ABOUT THE AUTHOR AND ARTIST: Courtney Parker has spina bifina. She has a young son. Courtney deeply loves her family and God.
IDJ Questions:
How do you deal with anxiety and depression? Does your organization offer safe spaces and offer time where employees and clients can use the techniques that they need to maintain or increase well-being? Why or why not?
The runt of some impoverished litter how dared I not survive? Otherwise, what does it say about society when we do not save the least of these?
My existence depends on your benevolence you pay me in tax from the scraps you render Caesar I’m no believer.
Remove your black boot from my neck, I don’t need your rations, fascist. I won’t be stranded by your standards of intelligence or physique.
Ableism likes its women blade thin starved till we’re dizzy bled out and white like glutted milk for children it deems we dare not feed until we fit.
Ableism lets me breathe provided I am blank and grateful as a grave made from milestones that pulverized my C-curved spine. This able life is a lie cleansed by the Savior who did not die. I’m saved by His grace. I don’t have to try, victory’s within me.
!
About the Author: Stacye Robinson
Stacye Robinson received a Master of Arts degree from Ball State University in 2013. She now lives in Indianapolis with her husband Ryne and Robinson.
Content caution: This article has information surrounding Sex, Bodies, Sexual health, Sexual Violence, Stigmatizing Language, Pregnancy, HIV, STDs, and Hepatitis C. This article is brought to you by Step Up Inc. An organization focused on HIV Services, Re-Entry Services, and HIV/STD/Hepatitis C Prevention.
What is a Healthy-Sexual?
It is no secret that sexual health education in schools is rare. For many decades, schools have only taught the abstinence-only-until-marriage sex education, and this is problematic for many reasons. Many school boards, and Parent Teacher Associations have left sex education for parents to educate their own children. The continual use of abstinence programs creates gaps of knowledge among so many generations of parents. Research has shown that the United States ranks first among the developed nations in rates of both teenage pregnancy and sexually transmitted diseases (STDs). Thus, the results of teenage pregnancy, HIV, STDs, and Hepatitis C (HCV) continue to rise among many generations, especially for young people.
As sexual health educators, we have asked many people how they find resources on sexual health education. Many people have taken on their own pursuits for knowledge with the internet. Many content creators have used their platforms on TikTok or YouTube to create comprehensive sexual health lessons for diverse bodies, genders, and sexualities (See Links Below). Although there is this wealth of content, stigma is still rampant and impacts the rising rates of infectious diseases and teen pregnancy the most. At Step Up, we have tested numerous clients that never have been tested, don’t fully understand the sex they are having, and have shame around their sexual behavior. All this shame is influenced by stigma around sex and sexual health. We must confront stigma with knowledge, language, and healthy habits to become a Healthy-Sexual.
Knowledge
It’s important to understand how diseases are transmitted so we can prepare for safer sex. HIV (Human Immunodeficiency Virus) is spread via 7 fluids: Blood, Semen, Pre-Seminal fluid, Vaginal fluid, Rectal fluid, Spinal fluid, and Breast Milk (unless the mother is undetectable). When talking to our clients concerned about HIV, we will often ask if there was any blood during sex as HIV “lives” in the blood. Left untreated, HIV may progress to an AIDS diagnosis, which is determined by a low CD4 and high viral load counts.
We stress to people, especially individuals newly diagnosed with HIV, that HIV is no longer a death sentence, and we can live a long, healthy life like anyone else. There are agencies, like Step Up, with many resources for people living with HIV that can help us thrive. We may only have to take one pill a day to keep the virus undetectable. Living with HIV should not prevent anyone from having sex or relationships.
People are also unaware of Undetectable equals Untransmittable (U=U). Many people living with HIV have an undetectable viral load which means they cannot transmit the virus. When speaking to clients who are not living with HIV, this is an opportunity to educate them that they should not shame or be afraid to have sexual partners who are living with HIV.
STDs are common and continue to spread. Common STDs we often test for at Step-Up are Gonorrhea, Chlamydia, and Syphilis. Gonorrhea and Chlamydia are site specific; they can exist on your genitals, in your anal cavity, and in your throat. Syphilis is spread through the blood like HIV. It is important to note that everybody experiences STDs differently. Some people are symptomatic while some people do not show symptoms.
HCV is an infection of the liver. HCV is spread via blood and is often associated with injection drug use. Most individuals acquire HCV through sharing needles or injection equipment; however, there has been a steady increase in cases for men who have sex with men (MSM) from rough sex.
Lastly, it is important to note that there is growing evidence that people with disabilities are at higher risk of HIV transmission than people who are not disabled. People with disabilities often experience increased risk factors associated with acquiring HIV including poverty, increased vulnerability to sexual violence and abuse, limited access, to education and healthcare, and lack of information and resources needed to facilitate safer sex.
#HIVTreatmentWorks LIVE UNDETECTABLE Being undetectable means you have effectively no risk of transmitting HIV to your partners through sex.
Language
It is important to talk about sex education in our communities and schools, not only to prevent transmission, but also to prevent the continual use of stigmatizing language. Working in this field, we have come across a lot of language that has further pushed stigma and the spread of HIV/STDs/HCV.
One piece of language we come across often is the word “clean.” This refers to someone’s status around HIV/STDs/HCV. Asking questions, such as “Are you clean,” perpetuates the idea that anyone living with an infectious disease is inherently “dirty.” This language not only shames community members who are living HIV/STD/HCV, but it also prevents individuals at risk from getting tested. We hear from clients that, if they don’t get tested, then they believe they never had HIV/STD/HCV in the first place. Unfortunately, this continues to increase community transmission for infectious diseases.
If people want to have safer sex and know if someone is living with HIV or an STD, it is crucial we know how to ask these questions:
“What’s your HIV status?”
“When was the last time you were tested for an STD?”
“It is important to me that we know our status before we have sex, do you want to get tested together?”
“Thank you for telling me your HIV status, are you undetectable?”
“Can we use a condom and lube to be safe?”
“You said you recently were diagnosed with an STD, have you completed your treatment?”
Person-First language is also impactful when talking about people and HIV. It’s important to understand that HIV status or STD diagnosis does not define us. Phrases such as “Are you infected”, “They have full-blown AIDS,” “HIV-ers,” and “They’re incurable” perpetuate false, negative narratives about our status and removes our sense of self from the discussion.
Below are a few examples of first-person language:
“They are living with HIV.”
“Their viral load is undetectable.”
“They have been treated for, and cured of, HCV.”
Habits
Now that we have more knowledge and language in our toolkits, let’s add some healthy habits that do our part in ending HIV/STD/HCV epidemics. The best behavior to incorporate HIV/STD/HCV prevention is to get tested regularly. Viruses can take quite some time to be detected on a laboratory test. Because of this, the CDC recommends getting tested every 3-6 months. Testing is accessible, confidential, and many organizations provide it for free, including Step Up. We can go alone, with a partner, or anyone we feel comfortable around.
Another habit to instill is to remain in treatment. If some is diagnosed with Hepatitis C, STD, or HIV, treatment is readily accessible, regardless of insurance status. Organizations like Step Up employ care coordinators who can help connect us to both medical and social services. If someone was exposed to HIV within a 72-hour window period, they can obtain a prescription for PEP (Post-Exposure Prophylaxis) to prevent transmission.
The last habit that can make us an extremely healthy-sexual is obtaining a prescription for PrEP (Pre-Exposure Prophylaxis). While there is no cure for HIV, we can prevent HIV by adhering to a PrEP regiment. Getting a prescription for PrEP can provide comfort when exploring your sexuality. PrEP is also beneficial for our community members who engage in injection drug use. If someone is curious about PrEP, feel free to ask the Prevention Team at Step Up.
As an HIV/STD/HCV Prevention team with people who are able, we recognize our bias and confront misinformation around people with disabilities and sex. We want to be accessible for your advocacy work. If anyone has any more questions, advice, or concerns regarding HIV/STD/HCV prevention, PrEP, or stigma, do not hesitate to contact a member of the Prevention Team at Step Up. Feel free to give us a call at 317-259-7013 or email our Education Outreach Coordinator sthomas@stepupin.org
Disability and Sexual Health Resources, Content, and Articles:
Sylvia Thomas has been at Step Up since May 2018. She graduated with her Bachelor’s Degree in U.S. History in 2018. In her career, while working with people living with HIV/AIDS, Sylvia has also had experience in working in grassroots movements and in international diplomacy for Transgender Rights, Racial Justice, and Sex Work populations. While not working, she enjoys travelling, performing spoken word, and visiting local LGBTQIA+ establishments.
Conner
Conner graduated from Indiana University – Bloomington with a Bachelor’s degree in Biology in 2018. During the latter end of his time at IU Bloomington, Conner found his passion in public health which influenced him to pursue a Master of Public Health at IUPUI. Conner focused heavily on prevention within health policy and completed his Master of Public Health in 2020. He began his professional career at the Indiana Department of Health (IDOH) in the violence prevention field before transitioning to the HIV/STD field where he led quality improvement and health equity efforts throughout the state. In his free time, Conner enjoys a plethora of activities, including running with his father, playing trivia at local venues with his group of friends, and hunkering down to watch a new documentary.
