What is a Healthy-Sexual?

By Sylvia Thomas and Conner Tiffany, Step Up.

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.

An illustrated image of two couples walking with the words: #HIVTreatmentWorks 
LIVE UNDETECTABLE
Being undetectable means you have effectively no risk of transmitting HIV to your partners through 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:

Meet the writers

Sylvia
Sylvia

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

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.

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Indiana Culturally Affirming Healthy Sexuality Education & Resources for People with Cognitive and Developmental Disabilities

This page will provide contact and program information for organizations in Indiana that provide healthy sexuality education supported by organizational policies:

AccessAbility

  • Type: disability services
  • Mission:   The result is that our communities are enriched through the full participation of ALL PEOPLE. Building advocates and inclusive communities.
  • Services: Provide individual consumers, governmental agencies, corporations and other non-profits with the tools necessary to ensure the acceptance, respect and inclusion of everyone. 
  • Location:  9105 East 56th Street Suite 308 Indianapolis, IN 46216
  • Phone:   (317) 926-1660
  • Fax:   (317) 926-1687
  • Email: info@abilityindiana.org
  • Website:  http://www.abilityindiana.org/

The Arc of Indiana

  • Type: disability services; Policy advocacy and direct services
  • Mission:   The Arc of Indiana is committed to all people with intellectual and developmental disabilities realizing their goals of living, learning, working and fully participating in the community.
  • Services: pooled special needs trust, advocacy network, support in applying for medicaid, medicaid waviers, SSI, SSDI, vocational rehab, career counseling, community living options, lifecourse framework, supported decision making, education for consumers and providers, health insurance education, audio and visual resources
  • Locations:  https://www.arcind.org/about-the-arc/local-chapters/ 
  • Phone: 800-382-9100
  • Fax: 317-977-2385
  • Email:   https://www.arcind.org/contact-us/ 
  • Website:  https://www.arcind.org/ 

Indiana Institute on Disability and Community (IIDC)

  • Type: disability services; advocacy, education, community services, research
  • Mission:   to work with communities to welcome, value, and support the meaningful participation of people of all ages and abilities through research, education, and service. 
  • Services: Interdisciplinary pre-service preparation and continuing education; Research, including basic or applied research, evaluation, and public policy analysis; Information dissemination; and Community services, including training, technical assistance, and model demonstration.
  • Location: 1905 North Range Road, Bloomington, IN 47408-9801 (https://www.iidc.indiana.edu/pages/contact-us-map )
  • Phone:  812-855-6508
  • Fax:  812-855-9630 
  • Email:  iidc@indiana.edu
  • Website:   https://www.iidc.indiana.edu/ 

Self-Advocates of Indiana (SAI)

  • Type: disability services; Personal Advocacy
  • Mission:   Self-advocacy is important because it is a way for people to know that all people, including people with disabilities, have rights. We help people understand that we want to be treated with respect. It is a way for our voices to be heard.
  • Services: education, state and local advocacy, resource consolidation
  • Location: 143 W. Market Street, Suite 200, Indianapolis, IN  46204
  • Phone:  317-977-2375 
  • Fax:  317-977-2385 
  • Email:  https://www.saind.org/contact-us/ 
  • Website:  https://www.saind.org/ 

The Village of Merici

  • Type: disability services; direct services
  • Mission:  The Village of Merici, Inc  provides residential and community opportunities for adults with developmental disabilities that promote a strong sense of community. By creating a sense of community we will create a sense of belonging.
  • Services: provides residential supported living and community integration services to individuals with developmental disabilities. The Village of Merici is an approved provider through the Bureau of Developmental Disabilities (BDDS) Waiver programs and is accredited through CARF International.
  • Location:  5707 Lawton Loop East Drive, Indianapolis  IN 46216
  • Phone: 317-292-9408
  • Email:   colleenrenie@villageofmerici.org 
  • Website: http://villageofmerici.org/

Credit

Post written by Skye Ashton Kantola, Assistant Director, Multicultural Efforts to End Sexual Assault, kantola@purdue.edu and  Cierra Olivia Thomas-Williams, Prevention Specialist, Indiana Coalition Against Domestic Violence (ICADV), cwilliams@icadvinc.org.

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Credit

Publication Guidelines written by Skye Ashton Kantola, Assistant Director at Multicultural Efforts to End Sexual Assault, kantola@purdue.edu.

Webinar 12: Sexual Wellness for People with Cognitive and Developmental Disabilities as Sexual Violence Primary Prevention

Description

Contextualizing sexual wellness for people with disabilities as a strategy for SVPP across the social ecological model; Risk Factors for SV for People with Disabilities related to sexual wellness; What kinds of things does a sexual wellness instructor need to consider for program adaptation? How should we address consent?

Webinar Outline
  • 5 minutes: Housekeeping & introductions (Skye/Cierra)
  • 15 minutes: Sexual Violence Primary Prevention and Disability Justice (Skye/Cierra)
  • 40-60 minutes: Panel Conversation (Panelists)
  • 10 minutes: Attendee Questions (Skye/Cierra)
  • 5-10 minutes: Resource Recommendations (Crew)
Presenters
  • Skye Kantola (she and they, Facilitator): Program Coordinator, Multicultural Efforts to End Sexual Assault, kantola@purdu.edu
  • Cierra Olivia Thomas-Williams (she/her, Presenter): Prevention Specialist, Indiana Coalition Against Domestic Violence, cwilliams@icadvinc.org
  • Jordan Haisley (she/her, Panelist), Disability Consultant, Indiana Coalition Against Domestic Violence
  • Dr. Mary Ciccarelli (she/her, Panelist), Professor of Clinical Medicine and Clinical Pediatrics at Indiana University School of Medicine
  • Pam Malin (she/her, Panelist), Disability Victim Advocate (she/her, Panelist), Disability Rights Wisconsin
  • Cindy Bentley, Executive Director (she/her, Panelist), People First Wisconsin
  • Timotheus Gordon (he/him, Panelist), Research Assistant, University of Illinois – Chicago

Closed Captions & Transcript created by Skye Ashton Kantola, MESA Program Coordinator

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