I went to a conference recently and witnessed a very ableist presentation about lead poisoning in children. The researchers were well-meaning. They looked at how lead poisoning altered the development of the human brain and body. The researchers found that children exposed to higher concentrations of lead had higher rates of ADHD and developmental delays as they got older. Over the course of the rest of this presentation, the public health professional was less well-meaning. The main presenter, who had a master’s degree in public health, took a very specific angle in how she approached the prevention of lead poisoning in children. She consistently used scare tactics throughout that were reminiscent of Autism Speaks advertisements. She highlighted the behavior issues in children who had been exposed to lead and talked about how greatly this disrupted families. She started her presentation/slides with a story about a boy in South Bend who “suddenly, one day” stopped developing and it took another year after that to determine he had lead poisoning. His developmental delays, she said, lead to their family falling apart and losing their house. That this “was the reality” for children and families affected by lead. She seemed confident that lead was “causing” ADHD and autism in her healthy community. If you replaced any of the times she said “lead” with “vaccines,” she would have been called an anti-vaxxer. This speech was not, in the end, about lead. It was about finding something else to target to eradicate “problem children.” It was “I did not sign up for a child with disabilities” and lead was the scapegoat.
Later it was confirmed the effect that this had had. Someone asked what to do if they had a child with ADHD or autism and if it was lead that caused it. The researchers said “there is no way to determine that” but the other lady was clear that lead could be behind it and to test their child immediately. She was not a scientist and not able to give that sort of correlation/causation statement. Everyone in the audience left with the message that lead could cause ADHD and autism and that we could erase “problem behaviors” from those by addressing lead poisoning. I heard so many people in the hallway talking about how they just had to share with everyone they knew about this threat. I felt so stigmatized and like this was just going to increase the erasure and masking of people like me.
I only recently discovered I am autistic and in the past few years have been diagnosed with/put on medication for ADHD. I have been so high masking (hiding and over-compensating for my autistic/ADHD behaviors) my entire life and have had the privilege of being able to maintain that up until this point, but that comes at a cost. I have only just been able to start unpacking how much damage and trauma have occurred as a result of masking for this long and not recognizing what my needs are. Not even knowing that I had different needs, because as far as I knew I was allistic (not having an autistic neurotype) and the reasons that I wasn’t completely fitting into that box were a myriad of character flaws. What caused this? People like this speaker, who punish or medicalize needs like these as “problem behaviors” instead of having compassion and realizing that not all “abnormal” behavior is inherently a problem requiring a fix.
I think researchers and health advocates get the wrong idea. They think we need to be “saved” from our disability, that preventing other people from experiencing disability is the highest priority. The reality is that I don’t need to be “saved” from my autism or ADHD. I need society and our structures to accept me the way I am and meet me where I am rather than creating arbitrary rules that keep me from being able to participate fully. The reason, in large part, that my autistic/ADHD experience is that of disability is that society is not built for the way my brain works. It is also inherently traumatic to live in a world that is not built for you. And it wouldn’t be much of a stretch to make those adjustments and be cognizant that other people may have different neurotypes than you. Everyone loses when we squash the neurodiversity our species is capable of.
Though I struggle a lot with my mental disabilities even outside the constraints of a society not built for me, when I am able to be as fully my authentic self as I can, I am capable of amazing things that my allistic and neurotypical peers are not. Contrary to the pervasive narrative that autistic individuals have no empathy, most autistic people I have come across have an over-abundance of empathy and an innate sense of justice. We are often creative, have great attention to detail, and think about problems outside of the box. Autistic brains tend to do what is called “bottom-up processing.” This means that when we approach a problem or question, we collect as many details and smaller pieces of information about the problem as we can to then form broader conclusions about the problem. Allistics tend to do what is called “top-down processing,” which is the opposite. They approach a problem by finding generalities about the problem, typically based in what they already know, and then move into the details. It is valuable to have both approaches, as they can come out with differing perspectives to be considered for the problem or question.
I will end this narrative by emphasizing that if you’ve met one autistic person, you’ve met one autistic experience. We exist on a spectrum (which looks more like a radar chart, not a line from “more autistic” to “less autistic”) for a reason. We all have our own unique support needs, strengths, and struggles. But we are valuable to the human species just like everyone else and should not be erased or suppressed. If there were a magic button right in front of me that could “cure” my autism or ADHD, I would walk away. (Not everyone with my disabilities may feel this way. I have lower support needs than some and can be relatively high masking when needed, which gives me privilege.) I know my worth and I’m going to keep fighting for it, regardless of what people like this public health professional have to say about it.
Bio
Gwen (she/they) is the Violence Prevention Program Evaluator for the Indiana Department of Health. They did their undergraduate degree in public health and bioinformatics at Miami University in Ohio and Master of Public Health in epidemiology at Indiana University Purdue University Indianapolis (IUPUI). They are AuDHD (autistic and ADHD) and proudly part of the LGBTQ+ community. Outside of public health work, Gwen likes to engage with her special interests and spend time with her spouse and dog. Together with their spouse, they go to comic conventions and play Dungeons and Dragons. They also occasionally volunteer for a dog rescue.
For many, part of everyday life with a person with disabilities is needing access to support staff to help with daily needs. That may mean services such as in-home staff, known as a DSP or Direct Support Professional. It can be recreational therapy, community staff, or even respite care.
As a DSP myself, I see a lot of turnover in the staff that help those with disabilities succeed. One of the things that is upsetting to me is having had saff that do not know what they are getting themselves into. They do not realize how high demanding this type of job is and end up quitting, leaving myself and clients without the proper assistance needed.
One of the things I wish they had is special education training on how to be a proper DPS. This would benefit both the staff and the client. Training can include having a nursing license or being a CNA. There is a difference between a 24 hour setting and a non 24 hour setting. It would be helpful for staff to understand the differences. Better trained staff would help prevent violence against people with disabilities. It would also help the client feel more comfortable with the staff helping them. It would also help them improve their advocacy skills and build confidence within themselves.
The state does not understand or see what support staff goes through every day and what we do every day for our clients. Having the support from the state could go a long way and really help the staff and client by having a better understanding and benefical training program.
CONTENT WARNING: This post discusses sexual and domestic violence.
Luna was born with Cerebral Palsy Spastic Diplegia. Luna uses a walker, crutches, and a power wheelchair to help with mobility.
She also deals with borderline personality disorder and CPTSD due to trauma throughout her life. She became pregnant with her son in 2017 after being raped while trying to leave a violent partner.
The unique challenges she faced while trying to escape her abuser really highlighted for her the disparities and lack of resources available not only for disabled individuals but disabled survivors of domestic violence.
Her experience has really inspired her to try and discover ways in which she can bring these disparities within the disabled community to the attention of others, start discussions, and hopefully inspire much needed changes. These changes are needed in order to better support, not only survivors of domestic violence, but people within the disabled community.
Keep reading below to hear more about her story and personal experience surviving domestic violence.
Throughout my journey of escaping domestic violence with a disability and going from a victim to a survivor, I have faced and had to overcome many unique challenges. As if being a survivor of domestic violence isn’t challenging enough already, the obstacles that I faced when escaping and getting back on my feet were compounded by the fact that I have a physical disability. In my experience when I was seeking help to not only escape, but to also recover from my abuse, the services available in my area could not fully accommodate me as a recovering victim of domestic violence. They were not able to accommodate me as a person with a disability.
People with disabilities face unique challenges on a daily basis not only because of their disabilities. An even larger contributing factor, in my opinion, as to why daily life can be so challenging, is because we have to navigate and live in a world that, at the end of the day, isn’t designed with disabled people in mind.
Depending on where you live in the United States, services for persons with disabilities and their daily lives and situations can often be bare minimum at best if they’re even available at all. And when it comes to domestic violence, this is an even bigger issue when you consider that resources for victims of domestic violence are already limited, even for those without disabilities. Shelters can fill up very quickly, and some of them require you to be able to live fully independent in order to stay there. In my area, from my experience, I would say most of them have this requirement. Assistance programs like HUD/Section 8, which are affordable housing resources for low-income individuals and families, have limited space, and they do not prioritize disabled victims of domestic violence at all. The housing program where I am from, prioritizes a) elderly on social security, b) low-income families with children, c) able-bodied and disabled, d) pregnant women, e) younger, low income, disabled individuals with no kids, and f) able-bodied, low-income individuals. Not only do these housing assistance programs fill up fast, but there is often a very long wait list. If you’re a disabled person, depending on the disability, there’s a good chance that you are on low and fixed income, which makes it necessary, yet difficult, to find affordable and manageable rent without being on some sort of housing assistance. If you’re a disabled survivor of domestic violence with low-income, like myself, these limited space programs with long wait lists, that don’t prioritize younger people with disabilities very well, let alone survivors of domestic violence, can be financially devastating and even life-threatening for the disabled victims of these situations.
I was with my abuser from 2015 to 2017. The majority of that relationship was extremely abusive. He started abusing me, psychologically, sexually, and physically, pretty early on in our relationship. I would say I started to notice that I was being abused maybe about 3 months in. He had come home from work one day, wanting to have sex. Now this isn’t my first abusive encounter or abusive relationship, as a result of trauma over the years I developed a condition that can sometimes make it difficult and even painful to experience sexual penetration. It’s kind of like an anxiety response from my understanding but I don’t have much control over it. Anyway, I had told my abuser that day when he expressed his desire to be intimate, that I didn’t feel I was able. Because of my condition, I already felt physically uncomfortable. He kept pushing and pushing even though I kept resisting both verbally and physically. He ended up overpowering me and raping me. When he saw how upset I was, he apologized, said that he didn’t mean to, and that he would never do it again. That was a lie though. I was often coerced and pressured into sexual encounters that I would express I didn’t want to be in. When I expressed a desire for him to stop, he would not. There would be periods of time in our relationship where I would be sexually abused on a daily basis, sometimes for weeks. I would experience a lot of psychological abuse, and gaslighting. He had me questioning my own reality often times. I would even experience physical abuse, be locked inside of our house, and pinned to the ground if I attempted to leave the house or put any physical separation between us during an argument. The times I did managed to leave the house he would stalk me or call me and make threats.
There was a lot of messed up things going on in our relationship for quite a while, and if I’m being honest, I would say that there were signs of his abusive and controlling behavior even before we got together. If I had the money or resources much earlier, I would have left a lot sooner, but I did not. I also had this crippling fear of being homeless again. Just a few years prior to meeting him, I had escaped a previous abusive relationship where I was brutally sexually assaulted. As a result of that first escape, I ended up being homeless for 2 years. After getting out of that situation, the thought of ever having to go back to homelessness was terrifying enough to convince me to stay with him for a total of 3 years, when it was all said and done.
I made my first attempt at a solid escape, once I was finally able to save up enough money, in February of 2017. That definitely wasn’t the end of the story. He was very upset and retaliated by raping me, which is how my oldest son was conceived. I tried to stay away from him as much as possible. But between needing help getting to doctor’s appointments, and as I got more and more pregnant, I became less and less able to safely care for myself, I needed help. The only resource that I was aware of, at this time, was applying for Section 8. I didn’t know where or how to access resources, to help me safely care for myself while pregnant. And those I reached out to didn’t know where to point me either. So ultimately about halfway through my pregnancy I had to invite my abuser back into my life, because at the time I really didn’t have anyone else that could do what I needed.
I made an attempt at another escape in 2018. I moved again, to a two-bedroom apartment with my 3-month-old son. I was on a fixed income of $750 living in a $480 apartment that did not include utilities, I was still waiting to hear about the housing voucher program. I was actually pretty far down on the list, until after I had my baby. Actually having the baby bumped me up. But not enough, the wait was still way too long. I tried and tried to keep my abuser at a distance as much as possible, but he definitely did not respect boundaries. I was desperately struggling to find resources that would accommodate my situation let alone even accept me. This forced me to depend on my abuser for things like rides to the grocery store, to doctor’s appointments, etc. He was using these opportunities to continue to exert his control and abuse me.
I had people that I was reaching out to for help, but the majority of them just couldn’t wrap their head around my situation. I was working with a family program at the time. The family specialist I had that would visit my home, knew of my situation, but she kept trying to convince me to cut my abuser off completely and then seek help. She couldn’t understand why I wasn’t able to do things in that order. She kept trying to compare my experience with domestic violence to her own experience with domestic violence. Because she is able-bodied, she just could not factor in how much me being disabled played into the severity of the abuse that I was experiencing, and why it was so difficult to escape my abuser completely.
I finally found a way to make her start to understand that I could not leave my abuser until I got services to compensate for the ways in which I had to be dependent on him. She got me in contact with a local service that primarily assist disabled elderly people. This was my first encounter with ageism. I had to go through an interview in order to be approved for these services. The woman who interviewed me showed up at my home unannounced, and my abuser happened to be there that day because I had needed his help with something. During the interview she made several derogatory comments about my age, and already let me know that she wasn’t sure if I could even be assisted by them. This was due to my age, the fact that I had a child and that most of the people they serviced are disabled elderly. She was also letting my abuser have input on what my needs were, despite the fact that my abuser and I were never married, and I had made it as clear as I could, even with him in the room, that he and I were not in a relationship. I was seeking services so that I didn’t have to be dependent on him so I could fully leave the relationship. Yes, if you’re wondering, what this woman did is very illegal. After the interview I was immediately denied services through this company. She even contacted my family specialist, and made claims that I had people helping me, (abuser) claimed that I was uninterested and didn’t seem to have a need for services.
I don’t know about other areas around the country, but I know at the time where I was living while going through all of this, the type of services that I was seeking are pretty much exclusively only available to elderly disabled people. I remember getting so frustrated because it seemed as though people, at least in this community where I was from, didn’t want to acknowledge or couldn’t wrap their heads around the fact that young people can be disabled as well. This community even had a couple low income and even assisted living apartments, but again these places we’re really exclusively available to the elderly on social security, which is different than the social security that I was receiving. Not only did I have to battle the obstacles of domestic violence, but I also had the obstacles of both ableism and ageism in my way when it came to seeking services to get away from my abuser. I remember during this time getting so discouraged that I almost gave up, and I believe I would have completely given up and given into my abuser if it wasn’t for CPS of all things getting involved.
I had a wonderful social worker, and she was the first person, in the four years that I was going through this ordeal, that immediately and fully recognized that I was being abused. Not only that, but she was probably the first person that actually took the time to listen to what I needed while taking that information to work with me instead of against me. She was able to get me involved with a family transportation program at Centerstone. She helped to find resources for me to get an in-home help aid. The transportation services that I finally had access to took some time to actually be useful. Once I got the right family support person, that was a big step in getting away from my abuser, because that’s one of the things that I depended on him for the most. Now I know that there are transportation services everywhere including services for the disabled. But a lot of these services, although they may be more easily and publicly accessible they have limitations, and unfortunately having a child with me created limitations that made these public services inaccessible.
Finally when my son was nine months old. I got a call from the OVO housing authority saying that they had a housing voucher available for me. I was told I had 60 days to use it. Now in order to use these vouchers, you have to save up the money for the deposit, and wherever you’re planning on moving has to meet certain standards and requirements by the program’s rules to use your voucher at a particular location. This was my next obstacle to overcome. I was living on very limited income and over 80% of my check was going to rent. And although the landlord I was renting from at the time was very eager to take the voucher, the place he had me living in was nowhere near up to the standards of the housing program, there were a lot of safety issues. He also refused to make any improvements to the apartment in order to be accepted as an approved location by the program. I had 60 days to use this voucher, and not only was finding a location difficult, it had to be within a certain budget that was not even disclosed to me. Also with my rent taking up as much of my income as it was, saving up the deposit was nearly impossible. Luck came my way, and I was able to use my voucher at a place that was safer and much more suited to my needs. Getting there was definitely stressful. I almost ran out of time and lost the voucher.
Now I had reached the point where my transportation issues were resolved for the most part, and now I finally had access to affordable rent. There was no reason to need to be financially dependent on my abuser in order to get bills paid and things like that.
I was finally in a position where I could actually leave and never look back. And that’s exactly what I did. I was able to get a temporary restraining order against my abuser too. He wouldn’t stay away from me before I moved so I had no choice. This is how I got involved with my local domestic violence program. They were the second group of people, as far as I’m concerned, to have saved my life. If it wasn’t for them I don’t know if I would have had the know-how or the courage to get a restraining order and finally stand up to my abuser. They also helped with going to court to get it extended and being able to testify and tell the judge everything that was done to me, well almost everything. It’s been a long, hard journey especially with obstacles, getting legal counsel, having to go to court and testify, and get things modified. I am now, today, married and living in a new town where I don’t have to worry about running into my abuser, and I have full legal and physical custody of my son. I’m so thankful for the people that actually listened and helped me get here.
If you read my story, hopefully it’s clear through my own personal experience where I think there are significant disparities when it comes to helping disabled victims of domestic violence. I didn’t share every piece of my journey, but hopefully I shared enough so that you can see where we can often fall through the cracks. That being said, I still want to take the time to be more specific.
First and foremost, there needs to be widespread education on how domestic violence affects the disabled community. I believe it needs to be understood that disabled domestic violence victims in a lot of ways can’t afford to be treated the same way as able-bodied domestic violence victims. In order to get proper help through these organizations our disabilities and limitations need to be acknowledged so that they can properly be accommodated. As a society we need to figure out a way to more quickly and efficiently help disabled victims remove themselves from these situations as soon as possible.
When it comes to disabled victims of domestic violence, we need to do more to help them than just hand them informational pamphlets and phone numbers. Even organizations like adult protection services, who are in place to help vulnerable adults, in my opinion, do not do near enough to help disabled people actually get out of violent situations. This is coming from my own personal experience and disheartening conversations that I’ve had with social workers from adult protection services during my struggle to get out.
We need more programs that prioritize people with disabilities regardless of age. And we need programs that prioritize the needs of domestic violence survivors with disabilities. When you have a disability statistically the situation is much more dire and much more likely to have a devastating outcome compared to able-bodied victims of domestic violence. As a society, we know pretty well how devastating it can already be, outcome wise, for female domestic violence victims who aren’t disabled. I would hope that it’s not hard to imagine how much the danger increases when you add a disability into the mix.
I think investments need to be made in shelters that are able to be more accommodating to the needs of disabled domestic violence survivors. There are some shelters that have staff that can help disabled survivors living there to some extent. But from my personal experience they’re not very common at all. When I was trying to find a shelter there was only one in the surrounding area that had the ability to accommodate my needs, but they were already full. All the other shelters that I had been in contact with could not accept me if I could not fully do things for myself this included getting to the grocery store, getting my own groceries, etc.
This next point ties back into the widespread education. I feel there needs to be some initiative put in place to help educate our court system of the impact that domestic violence has on disabled victims. It would be nice to have educated disability advocates working with the courts on a regular basis to help them understand things like statistics, obstacles that domestic violence victims with disabilities face that may negatively impact their ability to do things like access information, or press charges in a timely manner, or even testify against their abusers. Maybe there are places in this country where there are initiatives like this, but I know that such initiatives definitely are not nationwide.
When I was testifying in court, I would like to think that on some level my disability was taken into account, but honestly not the way it should have been. Especially not in the way that my protective order ended up being written. It was almost impossible to enforce. While under the protective order I had to file police reports, things like stalking and he brought friends of his to our original meeting spot for visitation exchanges, and they prevented me from being able to leave the store. I had to have my husband help me escape. It was very traumatic, and my police reports never went anywhere. However, I was still able to use them in court when I had to go back to address the situation. I was also told repeatedly by more than one lawyer that I should buy a gun to protect myself, because I can’t rely on the protective order to be able to do that. Which not only seems counterintuitive to me, but I can’t fire a gun, I can’t use a gun because of my disability and how it impacts me. Overall, I do believe that our court system needs to make a concerted effort to take crimes against the disabled community and the individuals within it much more seriously than they do. Especially when it comes to any kind of intimate violence. Crimes like filicide and caregiver violence, are unfortunately commonproblems that the disabled community faces, common enough that we actually have a national day of recognition for the victims of these crimes: March 1st.
I am only one person within the disabled community. I can only speak for myself and my own experiences in dealing with the obstacles of being a disabled domestic violence survivor. The experiences of the members of the disabled community are as diverse as our disabilities and limitations. Programs, services and accommodations need to be just as diverse as the people living within our community.
I believe accessibility plays a major role in not only recovery for disabled victims of domestic violence, but also prevention of domestic violence against the disabled. Victims of domestic violence, both able-bodied and disabled, are more likely to fall back into these cycles, especially if they do not have access to appropriate resources and services as well as comprehensive and applicable education on the subject. This becomes even more important when it comes to preventing domestic violence against people with disabilities and developmental disabilities.
Thank you so much for taking the time to not only hear my story, but to hear my thoughts on how I think we can better help disabled survivors of domestic violence.
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.
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.
