Did I Say That was OK with Me? Understanding Consent and Boundaries- by Sarah Meyer

Content warning: This article mentions instances of abuse and sexual assault. If you are a victim or survivor of sexual assault and are in need of support, you can call the National Sexual Assault Hotline provided by RAINN at 800.656.HOPE (4673).

Please note: This article was originally published by the National Federation for the Blind.

I’m standing at an intersection, listening and analyzing the flow of traffic and waiting for the safest moment to cross. I hear the parallel traffic and, with my cane out in front of me, I confidently begin to cross the street. Out of nowhere, a “concerned citizen” grabs my arm and says, “This way. Let me help you.” I feel the familiar flush of anger and shame, the tightening of my throat, and the clenching of my stomach. My muscles tense as I wonder what gives this stranger the right to not only assume that I am incapable of crossing this street without their help, but to touch me without even asking first? Do I pull my arm free? Do I say “No thanks, I’ve got this”? Do I just go along with it because I’m already so exhausted from the ongoing onslaught of microaggressions, constant accessibility barriers, and daily harmful assumptions that non-disabled people know what I need more than I do? In this moment in the middle of the street, unwittingly entangled with someone I don’t even know, I feel powerless. No response feels completely right, and I don’t know the best way to reclaim my power and confidence.

As blind people, we are all-too-familiar with this scenario. It might be when we encounter construction, new barriers in a familiar environment, or when we are in a store, bank, or restaurant. We have the shared experience of unwelcome interference by strangers, acquaintances, and even friends and family members.

Imagine a recent incident when you may have experienced some of the sensations, emotions, or thoughts that I mentioned above. These are all signs that someone has neglected to ask for your consent and has violated your boundaries. In order to understand consent, we need to talk about boundaries.

What are boundaries?

Boundaries are:

  • Limits that express respect for our own needs and the needs of others.
  • Unique to each person
  • Invisible lines that separate your physical space, feelings, needs, values, goals, and responsibilities from those of others.
  • Physical, mental, emotional, social, sexual, spiritual, relational, and material.

Understanding and defining your boundaries helps you to know where you end and others begin, and enable you to distinguish between acceptable and unacceptable treatment from anyone you encounter.

We all have boundaries, whether we are aware of them and are able to articulate them or not. Setting healthy boundaries requires self-awareness, empathy, and respect for our own needs and the needs of others. When we do not learn about boundaries as children, we move through the world without an understanding of our own limits and the ability to set them and are at a greater risk of experiencing emotional or physical harm.  

Why does consent matter?

Consent is not just the absence of a “no”; it is a freely given, enthusiastic “yes.” As people with disabilities, our boundaries—even if we are able to articulate them—are so frequently ignored that it can be difficult to understand what enthusiastic consent does and does not look like. With every unsolicited touch from a stranger, teacher, or parent (even if it is done seemingly for the purposes of instruction), we are taught that our bodies do not belong to us. When consent is so rarely requested from us in a non-sexual context, it is no wonder that people with disabilities are at a significantly higher risk of experiencing sexual or intimate partner violence.

Sometimes, I have a visceral reaction to the frequent boundary violations committed by others because they remind me of other times I felt helpless, of the experiences that have given me the title of “survivor.” In a few milliseconds, I am no longer in the street with a stranger; I am a small child being sexually and physically abused by a family member that I trusted; I’m a young adult, hiding from my drunk boyfriend who is breaking furniture and yelling at me; I am at Washington Seminar and national convention, feeling hands on my skin that I never asked to touch me; I am at another student’s apartment after a party at the training center apartments where I have come to search for my independence, but instead wake up to find a man raping me while I silently cry. The same thread woven throughout these experiences is the thread of powerlessness and self-blame.

What I know now, after years of therapy and learning about boundaries and consent, is that I was not to blame in these situations. Yes, my power was momentarily taken from me, but that does not make me responsible. When I was a child, I could not consent simply because I was a child and had not been taught that I had the right to boundaries and autonomy. When I was assaulted as an adult, nothing I did gave someone the right to take advantage of me without my consent; this includes going over to the student’s apartment and consenting to kissing. Consent is ongoing, can be withdrawn at any time, and consenting to one activity is not a license to advance to another. Now that I have been taught what healthy boundaries look like, I’m better equipped to practice self-compassion, and am empowered to teach others their importance so we can build a culture of consent. As we work towards that, hopefully fewer people will experience the trauma that I have.

What does it look like to set boundaries or ask for consent?

I recently attended an intensive training for a form of trauma therapy called EMDR (eye movement desensitization and reprocessing). A coach who was assisting me by describing training videos asked me if I would like to touch her hand and arm as she demonstrated the signature actions that are necessary for this type of therapy. If my movements were incorrect, she asked me if I would be okay with her touching my hand and arm to make an adjustment. She asked if she could either tap on my knees or cue me verbally to tap on my own knees so I could learn the pace and duration of the tapping, which is essential to my understanding of how to deliver this modality as a blind therapist. In all of these instances, the coach sought my permission and feedback on my comfort level with her actions. If I had said “no” at any point, I am confident that my boundaries would have been honored and a different solution discovered.  

My consent, needs, and autonomy being valued in these ways helped me to feel seen, heard, and valued. As I reflect back on this experience, I recognize how strongly it contrasts with the feelings of shame, anger, and powerlessness I experience in those all-too-common scenarios when someone swoops in and commandeers my body, time, or sense of control without my permission.

Maybe next time I am crossing that street, and a well-meaning person grabs me to provide help I do not need or want, I’ll recall this experience where my boundaries were beautifully honored and my consent was desired. Maybe I’ll remember that I do have power, and that it is never rude to expect others to respect my body and personhood.

Just because we’re disabled, it doesn’t mean we don’t have the right to consent, autonomy, and our own decision-making power. This applies throughout the entire process—from sexual misconduct or other consent/boundary violations, to the sharing and use of our survivorship stories, to our path of processing and healing from trauma and boundary violations.

It is never too late to start the practice of honoring your own and others’ boundaries. Every time you set a boundary and someone respects it, and every time you ask for enthusiastic consent from another, you are both healing the wounds in others and also healing your own.

ABOUT THE AUTHOR: Sarah Meyer

Sara has pale skin with long reddish hair. She is wearing a black blaz. She’s smiling.

Sarah Meyer is a multiply-disabled white woman who is passionate about mental health, disability justice, and advocating for safety and inclusion for all. She obtained a Bachelor of Arts in Biblical Literature with a Minor in Psychology from Indiana Wesleyan University in 2011 and a Master of Arts in Clinical Mental Health Counseling from Ball State University in 2020. Sarah currently resides in Indianapolis, Indiana, with her guide dog Edwin and her cat Lumi. She enjoys reading, singing and playing piano, spending time with family and friends, exercise, and outdoor activities.

The Differently Abled Advocate: Anything Is Possible by Luna Eversong-kloss

(Picture Description: Luna is standing in a yard with bushes in the background. She has a black form-fitting dress and is using a red walker. Her hair is brown with bright purple tips.)

One thing my journey healing from domestic violence taught me is to advocate for myself. While on this journey, thanks to my advocate Nicole, I was given the opportunity to advocate for others. This is a desire I had for a while, but I didn’t know where to start. This opportunity was the start of a new journey, the spark of a passion I never thought I’d be able to pursue.

 My name is Luna Eversong-Kloss and I’m The Differently Abled Advocate.

2 years ago, I got a call from Nicole about a panel with Indiana disability Justice that she was going to present on. She asked me if I wanted to share my experience as a disabled person and a domestic violence survivor. I would also share my thoughts on how resources for disabled survivors could improve and better support victims. It was a panel on sexual wellness and violence prevention. I was so excited she invited me. I jumped at the chance. This is the kind of thing I wanted to speak about, but I didn’t know how to get people to listen to me and here was my opportunity.

The day of the panel came. I was nervous and hoping that I would be able to speak and be understood. It was over a zoom call and there were lots of people in there. I was so scared that I would not be able to speak, but it turns out I found my voice. I met some great people, and we had some great discussions. I did so well on the panel that I got invited to come back a few times. And I got paid to do it. I couldn’t believe it. My voice actually had value. I’m going to be honest, as an adult with a physical disability, it was hard for me to feel like I had much value specifically in the workplace. Whenever I would speak to people online about issues in the disabled community, it seemed like nobody listened. Being abused myself, whenever I used my voice and tried to ask for help for a long time, it seemed like no one cared.

Words cannot accurately express the pride that I felt after getting feedback from these panels, from other advocates and organizations who do this kind of thing all the time. Here I was never having done anything like this before, and I actually had the power to make a real impact.

I talked to my family and my therapist and my husband about these panels and they were all really proud of me. That’s when my brother pitched the idea of me becoming a public speaker. My mom agreed that I would be really good at it. I really liked that idea. My dad had been pitching the idea for a while that I should write letters to Congress about some of the issues that myself and other disabled people were facing. But that seemed a lot more daunting than being a public speaker. Maybe becoming a public speaker will one day allow me to be able to speak to lawmakers and actually be listened to, as opposed to writing letters as an anonymous face.

Well, it took me a few months, but I finally took the plunge and launched my own website as a public speaker and advocate.

I want to help people understand that with the right support and resources, anything is possible, and I want to do so by speaking about my experience overcoming adversity while living with a disability. I want to be able to talk to organizations, lawmakers, schools, and anyone who needs to hear it about the importance of having available accessible support and resources for those with disabilities. But I also want to talk to anyone who finds themselves in a vulnerable situation struggling to find support.

Throughout my experience escaping domestic violence, and even recovering, I have found that, depending on where you live, support and resources can be scarce, especially if you are also disabled. Sometimes the available support and resources aren’t even accessible to those with disabilities, and that’s something I don’t think a lot of organizations realize. I remember not being able to go to shelter because the only shelter available to me required me to be fully independent and functioning. Some resources I encountered couldn’t help me because I was too young or because I had a child. I encountered a lot of barriers when I was trying to get help getting out of my situation, and I know that I’m not the only one out there going through the same experience. I’m definitely not the only disabled person going through this experience.

Luckily, I eventually was able to get the support I needed and form the system. But the amount of struggling I had to experience in order to do that, in my opinion, was unnecessary. I don’t want to see anyone else struggle like that to get the help that they need.

Sitting here today. I know that the support and resources that I did have and do have were essential for where I am at today. I couldn’t have gotten here on my own. I don’t even know if I would be here if it wasn’t for my support system. I never thought that I would be able to sit here today and say that I am actively recovering and that I feel strong.  Now I will give credit where credit is due and say that if it wasn’t for my own determination and tenacity, I wouldn’t have got what I needed in order to be here today with you talking about this. But that support system I have has been just as essential to me finding my footing again, as my own qualities that helped me recover. I remember not that long ago I thought something like this would be impossible. Now it’s possible, and I want to show other people that. I want to share my story, my thoughts and my experience in the hope of inspiring real change. Change that will allow people like me, disabled or not, to have a better quality of life, find their strength again and to feel valuable and heard.

If you’re interested in hearing more about my story and what I’m trying to accomplish, I have blogs and video clips on my website discussing issues that people in the disabled community face as well as my own experiences. If you’re interested in speaking with me, you can book time with me on my website. Doing so is a good way to find out If you would like me to give a longer talk or be on an upcoming panel. I would love to speak with you and share my experience and my thoughts on how we can better support people in vulnerable situations, especially the disabled community.

My Website https://thedifferentlyabledadvocate.org

Social Media

Facebook https://facebook.com/109310851920835/

Instagram https://www.instagram.com/differently_abled_advocate/

Twitterhttps://twitter.com/imdiffabled?t=Xz1Lb9JvAiwhpMPcWwlgag&s=09

The Differently Abled Advocate

Anything is possible with the right support.

By Luna Eversong-Kloss

Picture Description: Luna is standing in a yard with bushes in the background. She has a black form-fitting dress and is using a red walker. Her hair is brown with bright purple tips.
(Picture Description: Luna is standing in a yard with bushes in the background. She has a black form-fitting dress and is using a red walker. Her hair is brown with bright purple tips.)

One thing my journey healing from domestic violence taught me is to advocate for myself. While on this journey, thanks to my advocate Nicole, I was given the opportunity to advocate for others. This is a desire I had for a while, but I didn’t know where to start. This opportunity was the start of a new journey, the spark of a passion I never thought I’d be able to pursue.

 My name is Luna Eversong-Kloss and I’m The Differently Abled Advocate.

2 years ago, I got a call from Nicole about a panel with Indiana disability Justice that she was going to present on. She asked me if I wanted to share my experience as a disabled person and a domestic violence survivor. I would also share my thoughts on how resources for disabled survivors could improve and better support victims. It was a panel on sexual wellness and violence prevention. I was so excited she invited me. I jumped at the chance. This is the kind of thing I wanted to speak about, but I didn’t know how to get people to listen to me and here was my opportunity.

Image description:  a blue background with black dots is framed with black and red. The yellow lettering says "I HAVE A VOICE" with 3 yellow lightening bolts in the upper right corner.
Image description: a blue background with black dots is framed with black and red. The yellow lettering says “I HAVE A VOICE” with 3 yellow lightening bolts in the upper right corner.

The day of the panel came. I was nervous and hoping that I would be able to speak and be understood. It was over a zoom call and there were lots of people in there. I was so scared that I would not be able to speak, but it turns out I found my voice. I met some great people, and we had some great discussions. I did so well on the panel that I got invited to come back a few times. And I got paid to do it. I couldn’t believe it. My voice actually had value. I’m going to be honest, as an adult with a physical disability, it was hard for me to feel like I had much value specifically in the workplace. Whenever I would speak to people online about issues in the disabled community, it seemed like nobody listened. Being abused myself, whenever I used my voice and tried to ask for help for a long time, it seemed like no one cared.

Words cannot accurately express the pride that I felt after getting feedback from these panels, from other advocates and organizations who do this kind of thing all the time. Here I was never having done anything like this before, and I actually had the power to make a real impact.

I talked to my family and my therapist and my husband about these panels and they were all really proud of me. That’s when my brother pitched the idea of me becoming a public speaker. My mom agreed that I would be really good at it. I really liked that idea. My dad had been pitching the idea for a while that I should write letters to Congress about some of the issues that myself and other disabled people were facing. But that seemed a lot more daunting than being a public speaker. Maybe becoming a public speaker will one day allow me to be able to speak to lawmakers and actually be listened to, as opposed to writing letters as an anonymous face.

Well, it took me a few months, but I finally took the plunge and launched my own website as a public speaker and advocate.

I want to help people understand that with the right support and resources, anything is possible, and I want to do so by speaking about my experience overcoming adversity while living with a disability. I want to be able to talk to organizations, lawmakers, schools, and anyone who needs to hear it about the importance of having available accessible support and resources for those with disabilities. But I also want to talk to anyone who finds themselves in a vulnerable situation struggling to find support.

Throughout my experience escaping domestic violence, and even recovering, I have found that, depending on where you live, support and resources can be scarce, especially if you are also disabled. Sometimes the available support and resources aren’t even accessible to those with disabilities, and that’s something I don’t think a lot of organizations realize. I remember not being able to go to shelter because the only shelter available to me required me to be fully independent and functioning. Some resources I encountered couldn’t help me because I was too young or because I had a child. I encountered a lot of barriers when I was trying to get help getting out of my situation, and I know that I’m not the only one out there going through the same experience. I’m definitely not the only disabled person going through this experience.

Luckily, I eventually was able to get the support I needed and form the system. But the amount of struggling I had to experience in order to do that, in my opinion, was unnecessary. I don’t want to see anyone else struggle like that to get the help that they need.

Sitting here today. I know that the support and resources that I did have and do have were essential for where I am at today. I couldn’t have gotten here on my own. I don’t even know if I would be here if it wasn’t for my support system. I never thought that I would be able to sit here today and say that I am actively recovering and that I feel strong.  Now I will give credit where credit is due and say that if it wasn’t for my own determination and tenacity, I wouldn’t have got what I needed in order to be here today with you talking about this. But that support system I have has been just as essential to me finding my footing again, as my own qualities that helped me recover. I remember not that long ago I thought something like this would be impossible. Now it’s possible, and I want to show other people that. I want to share my story, my thoughts and my experience in the hope of inspiring real change. Change that will allow people like me, disabled or not, to have a better quality of life, find their strength again and to feel valuable and heard.

If you’re interested in hearing more about my story and what I’m trying to accomplish, I have blogs and video clips on my website discussing issues that people in the disabled community face as well as my own experiences. If you’re interested in speaking with me, you can book time with me on my website. Doing so is a good way to find out If you would like me to give a longer talk or be on an upcoming panel. I would love to speak with you and share my experience and my thoughts on how we can better support people in vulnerable situations, especially the disabled community.

My Website https://thedifferentlyabledadvocate.org

Social Media

Facebook https://facebook.com/109310851920835/

Instagram https://www.instagram.com/differently_abled_advocate/

Twitterhttps://twitter.com/imdiffabled?t=Xz1Lb9JvAiwhpMPcWwlgag&s=09

ABOUT THE AUTHOR: Luna Eversong-Kloss

Luna is a tattoo, model, advocate, writer, and mother of two. She also has cerebral palsy.

Luna is standing with her crutches. She has tattoos and a lip piercing. She has long brown hair’with blonde streak. Her head is cocked, and she is smiling broadly. She is wearing a black shirt with skulls and flowers.

Toxic Capability by Ashley Caveda

“Toxic Capability”

Indiana Disability Justice

Ashley Caveda

 

“I hate going to the airport. They always want me to use a wheelchair and it makes me feel so old,” said my 87-year-old former neighbor the first time we spoke on the phone in over fifteen years.

 

She, of course, knows that my brother and I both use wheelchairs because of a car accident when we were children. That didn’t stop her from saying something that betrayed a very destructive underlying belief about disability: that disability—or the appearance of disability—is shameful and must be fought against as though you might otherwise drown, even if that resistance is ultimately to your own detriment.

 

The cultural pressure to be strong, able-bodied, independent, free from illness, and perpetually young is damaging to society in general. I call this tendency to emphasize or even playact ability in order to fulfill the cultural expectation of what it means to be a relevant, whole human being “toxic capability.” Such a term is valuable because, in naming toxic capability, we can become better at recognizing it in ourselves and in the world—and recognition is the first step toward eradication.

 

Very often, a person exhibiting toxic capability resists or refuses care or assistance they actually need for their health, mobility, pain management, peace of mind, or access to the larger world. They may choose to do without rather than suffer the “indignity” of appearing weak or disabled or of being confirmed as disabled—sometimes just in their own mind. Even those who do accept the care or assistance they need may only do so with a cloud of shame surrounding that need.

 

My own mother, a fierce advocate for people with disabilities, resisted using a cane until long after she needed one. Her identity as an able-bodied person continued to fracture with age, and yet, internalized ableism made her reject a disabled body as her own.

 

Internalized ableism is the subconscious, internal preference for able-bodied people over disabled people. No one is immune from this type of bias, including friends and family of disabled people and even including disabled people themselves. Often, this internalized ableism is externalized in the form of inadvertent microaggressions that reinforce the notion that, in the hierarchy of ability versus disability, disabled people like myself will always be at the bottom—and there’s no elevator up.

 

For so long, my mother had been the mother of, caregiver to, and advocate for people with disabilities, while never wearing the mantle of disability herself. But when she finally accepted her identity as a disabled person, she was able to move around with much greater ease. Soon, after owning one cane, she owned five, with different designs, like pink roses and iridescent butterflies. Beautiful and practical, these tools empowered her to walk safely again. Her life was made better by acknowledging and honoring her status as a disabled person.

 

It’s no wonder my mother struggled with her shifting identity. After all, we observe from a very young age that society prefers and caters to able-bodied people, while often pitying, excluding, mocking, and patronizing disabled people. We learn well the subconscious lesson that ability is best and resisting its inverse is strength.

 

Ironically, accepting help, care, and accessibility tools actually requires a strength that many people don’t have. This is real weakness: to deny the needs of your body and mind because you can’t bear having those needs in the first place.

 

You may think you’re only applying these “standards” to your own self and body, but they have a way of seeping into how you view others too. Just a few ableist microaggressions I have personally experienced include a family friend seeing a picture of me and my sister and exclaiming with a smile, “You can’t even tell she’s in a wheelchair in this one!” Or a distant relative saying to my sister, “I don’t know why Ashley keeps referring to herself as disabled. I don’t think of her as disabled at all.” Or an able-bodied stranger in a coffee shop telling me, “I’m praying for you to be whole again.”

 

I am whole and I am disabled—and I reject the ableism that makes someone try to re-form me in their image.

 

Toxic capability harms me and other disabled people and it keeps able-bodied people from better health and better access to the world and the things they need and enjoy, and it sabotages them from having more equitable relationships with marginalized people.

 

Just like other internalized biases, it is important for us to do a better job of recognizing internalized ableism and toxic capability in ourselves and others—and to analyze and interrogate those biases.

 

Think about your own life. The times you decided you didn’t need the blood pressure medicine your doctor prescribed. The times you pushed past your healthy limits while working out so you could prove how strong you were. The times you refused assistance from a friend because you pride yourself on not needing anyone to help you. The times you avoided addressing your mental health issues. What is at the root of all of these refusals?

 

This may be a difficult question to answer, and it may reveal uncomfortable truths. Perhaps you simply think of yourself as stubborn and even regard that stubbornness as a virtue; in reality, that obstinacy is often another artifact of our culture of toxic capability.

 

When loved ones claim to be allies to disabled people, but then refuse basic care, medications, or even standard-issue help from other human beings, their actions say something they probably can’t articulate in words: Somewhere, deep inside, they, like so many others, view needing help as weakness and feeling or being seen as weak is loathsome. As long as they get to be the hero helping the disabled person, disability is acceptable—but no one person is always the hero and no one person always needs saving.

 

My former neighbor didn’t want to use a wheelchair because she thought it would make her look old, even though she was old. My mother refused to use a cane for a time, even though her body couldn’t do what it used to do. In trying to avoid their weakness, they slammed headlong into it.

 

My hope is that we can be more aware of our own actions and intentions and how they may be revealing our internalized ableism. That we will work to reject our culture of toxic capability. That we will learn to be less afraid of needing help, getting older, taking medicine, and using mobility aids. And that we will see it takes incredible strength to understand who we are, acknowledge what we need, and accept those things with grace.

ABOUT THE AUTHOR: Ashley Caveda

Ashley has pale skin and long brown hair. She is wearing a black top that is a bit off the shoulders. She is wearing pearled, dangling earrings. Her hands are folded in her lap. She is smiling broadly. There are closed-up trees in the background.

At the age of six, Ashley was in a car accident that left her paralyzed. As an adult, she often uses her writing to grapple with the different facets of disability, from the difficult to the hilarious.

 

Currently, she lives in Indianapolis and serves as the director of communications and events at a local church. She is also a freelance writer and independent contractor who loves assisting organizations with meaningful missions.

 

Ashley received an MFA in creative writing from The Ohio State University. Her work has appeared in Monkeybicycle, Superstition Review, The Southeast Review, and Ruminate Magazine.

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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