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.)

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

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.

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

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.

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 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 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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Domestic Violence Prevention, Disabilities, and Caregivers

In an effort to create a safe space to read about an uncomfortable topic, like domestic violence, I want to ask you to close your eyes for a moment and envision what it might take to eliminate violence. Take some deep calming breaths, in through the nose and out through the mouth, feeling your diaphragm expand as you fill with the good and contract as it expels the bad, and read on when ready…

Domestic Violence is a terrible thing that comes in many different forms; physical, emotional, spiritual, sexual, marital, parental, verbal, sensory, etc. It’s violence in the home, it’s violence at the hands of someone you trust, someone you rely on, someone you may love. In every relationship the potential for violence exists. It may come from the caregiver, it may come from the person receiving care, or it may come from both. Intentional domestic violence is easily recognizable as evil, but unintentional domestic violence is something else entirely, and potentially even more traumatizing as it is unexpected and uncontrolled. Both must be prevented.

How do we prevent domestic violence and reduce isolation? Through support, engagement, and open communication and creating safe spaces. No one should ever feel as though they are alone and have no one to talk to. If they are trying to speak up, no one should ever feel as though no one cares or no one is listening. People with disabilities, including conditions of aging that most will experience later in life, are among the most vulnerable to domestic violence. Our disabilities, if left unsupported through accommodation, can isolate us. It is through supported independence that this population is best equipped to prevent such violence before it occurs.

Disabilities can impact communication and emotional responses as much as they impact mobility, sensory experience, and functionality. Those closest to people with disabilities are often the most aware of how they have adapted to accommodate these challenges in a world that was not designed from the start to be accessible. Our loved ones are often the most capable in supporting our independence, including our ability to speak out about our own needs, including our own safety and treatment from others. Our friends, congregations, and close community members are often those most sensitive to our wants, desires, needs, limitations, and safety accessing social engagement. These people are not just our friends and family, they are our Caregivers, and their support helps us maintain our independence as active members of our families and community. Sometimes the people with the disabilities are the Caregivers too.

Fighting against isolation comes with most disabilities and conditions of aging. It is sometimes easiest to stay home, especially as the impacts of the disabilities and age progress; but the less engaged we are with our community, the more vulnerable we become. As our community shrinks, those closest to us must naturally provide additional support, or we adapt but take on more than we should ourselves, sometimes at physical risk. Regardless of what disability you have, the lack of social interaction takes an emotional toll, potentially leading to outbursts that can become violent themselves. Those who are providing support, sometimes the only person providing support, without respite care can easily become overwhelmed. Leading to potentially violent outbursts as well. The care relationship can become toxic.

Frustration leads to anger, anger leads to aggression, aggression leads to suffering. Someone who needs daily assistance with personal hygiene, being vulnerable to receive support from someone they love and trust, unintentionally becomes a victim of sexual assault because that person wiped or cleaned too aggressively. Someone who needs mobility assistance becomes the victim of physical abuse because the person assisting them unintentionally injures them by rushing, being rough, or not paying attention to their safety during a transfer. A loved one becomes the victim of unintended verbal abuse because the person with the disability’s frustration reaches a breaking point and there’s no one equipped to hear it. An aging immigrant who must rely on a visiting nurse who doesn’t speak their language fluently becomes a victim of neglect, suffering emotional abuse due to the barriers in communication and culture. Instances of unintended domestic violence, fueled by uncontrolled emotion, can have lasting traumatic impact on the people involved and their relationships going forward.

Getting Support, Removing Toxic Stress

Maintaining connection with a supportive community of Caregivers, including close family, is the best way to prevent this toxic care environment from developing, and provides support to guard against the violence if it begins to develop. In today’s world of pressing fast paced social and work demands it can be a challenge for those who want to help to make the time. Many people wind up isolated from their would-be caregivers for these reasons too, and don’t even speak up when they need help because they don’t want to be an inconvenience or a charity case. Ultimately this could lead to institutionalization, which opens a whole new door to potential structural or systemic violence.

However, many don’t know that if you are eligible for Medicaid Waiver services, there is a service that can help you establish a supportive network of Caregivers by providing compensation for the non-skilled services that they provide. Many people with disabilities and conditions of aging don’t apply for Medicaid Waiver services because they assume they won’t qualify without exploring it. Advocates Personal Care, an approved Medicaid Waiver service provider, is seeking to employ family and community Caregivers of Medicaid Waiver eligible people with disabilities and/or conditions of aging. Offering a starting wage of $13 an hour for services that they may already be providing to someone close to them. If someone is unsure if they qualify for Medicaid Waiver Services, or doesn’t know where to start, or what questions to ask, Advocates is able to assist with navigating that process.

Advocates Personal Care can be contacted by text or phone call at (317)527-4251, or online at https://advocatescare.com/get-started/

Having paid Caregivers through Medicaid Waiver services helps people with disabilities and conditions of aging maintain their independence in their own homes by ensuring appropriate supportive care when needed. As the caregiver is receiving payment for the time that they are providing services, it becomes easier for the Caregiver to reduce work hours or sacrifice personal time if necessary. A Consumer of Medicaid Waiver services can have more than one paid family or community caregiver, allowing the supportive services to be shared by the Consumer’s community. Having paid Caregivers as employees of Advocates Personal Care allows for better coordination and engages the provider, Advocates, as oversight and another layer of protection in the event a care relationship becomes toxic.

Caregivers must clock-in and document their time, and Advocates Personal Care must follow-up to ensure the care provided is what the Consumer needs and wants, giving the Consumer the control over what services they are receiving and from whom. Advocates is able to provide non-skilled services to any Medicaid Waiver eligible person with disabilities or conditions of aging throughout the state of Indiana, as long as the Consumer has enough potential Family and Community Caregivers to ensure consistent care when needed, including backup if an expected Caregiver is unavailable.

Some examples of non-skilled services are meal planning & preparation, laundry & light housekeeping, grocery shopping & community-based errands, medication organization & reminders, socialization & safety, mobility & transfer assistance, assistance with hygiene, eating, and other activities of daily living. If you are a person with disabilities or a senior citizen who relies on support with these types of activities to maintain your independence in your home, or if you are providing this kind of supportive care to someone close to you who may be eligible for Medicaid Waiver Services, contact Advocates Personal Care to learn more.

Advocates Personal Care, (317)527-4251, https://advocatescare.com/get-started.

Written by: Jeremy K. Warriner – Accessibility, Hospitality, & Outreach Consultant; Inspirational Speaker; CEO & Founder of Walking Spirit & Spirit Therapies, LLC.

Jeremy Warriner

Jeremy Warriner is an Indianapolis native, Black Belt in Shorei-Goju Ryu Karate, with a degree in Consumer and Family Sciences from Purdue University emphasizing in Hospitality and Tourism Management. He worked as an Operations Director and Assistant General Manager across multiple brands and markets in the Hospitality industry for over a decade. In 2005 Jeremy sustained severe burns in a car accident that required the amputations of both legs from above each knee. This traumatic event led Jeremy to redefine his path as he accepted his newly added identity as a person with disabilities. Whether walking on technologically advanced prosthetic legs or utilizing a wheelchair, Jeremy is an active member of his community, charter member of the international Rotary Club for World Disability Advocates, and founder of Walking Spirit & Spirit Therapies, LLC which provides Diversity, Equity, and Inclusion assessment, consulting, and training from a Disability Lens. Jeremy’s current project is adapting Karate to his disability. He can be reached through his website at https://www.walkingspirit.org, or by email at jeremy@walkingspirit.org.

Prevention Spotlight: Nicole Kass Colvin

Disability Justice and Violence Prevention Spotlight: Nicole Kass Colvin

Indiana Disability Justice periodically highlights collaborators and partners across the country who are centering people with disabilities and disability justice in the work to end violence. We hope that you will read all about Nicole Cass Colvin who is practicing at the Ohio Alliance to End Sexual Violence. In this interview Nicole walks us through what disability justice means in her practice and where the field could use improvement and redirection.

Ohio Alliance to End Sexual Violence

The Ohio Alliance to End Sexual Violence serves as Ohio’s rape crisis coalition. State sexual assault coalitions serve as the main training and technical assistance provider for rape crisis centers on best practices in programming and administration, and they advocate on behalf of rape crisis centers and the survivors they serve in public policy advocacy efforts at the state and federal levels.

Where you practice primary prevention & disability Justice? I work with the Ohio Alliance to End Sexual Violence where our mission is “As Ohio’s statewide coalition, OAESV uses an anti-oppression lens to advocate for comprehensive responses and rape crisis services for survivors and to empower communities to prevent sexual violence.” As the Coordinator of Community Responses at OAESV, I primarily work with Sexual Assault Response Teams (SART) and Coordinated Community Response Teams (CCRT) across Ohio’s 88 counties, which may be seen as intervention, but I believe can be vital in primary prevention. SARTs and CCRTs are spaces where we can explore making our communities as safe and cared for as possible, and have people at the table to make change happen. Often this looks like focusing around the community level, but communities can get creative with it and really make impacts that span across levels.

What do you like to do for fun? Hobbies?

Read a lot of fantasy novels, listen to a lot of podcasts, get outdoors, explore the arts, and spend time with my chihuahua pug, Rizzo.

I am a white cis-female, nearly 30, with medium length wavy hair and big burgundy cat-eye style glasses. In this picture, I am smiling, have on red lipstick, a beige and gray sweater, and have my arm on my hip.

About Nicole

After studying psychology, I started in the anti-violence field in 2015 as a legal advocate in rural Alaska. Since then, I’ve gotten to work with some disability-serving agencies, and with building up a new sexual assault program in Indiana. Currently, I work as the Coordinator of Community Responses at the Ohio Alliance to End Sexual Violence. I live in Ohio, but in my town, one side of the street is Indiana and the other side of the street is Ohio, so I feel very passionate about addressing sexual violence and oppression in both Indiana and Ohio. Email: colvin@oaesv.org

What does disability justice mean to you as you practice primary prevention?

Primary prevention is about creating a world where sexual violence doesn’t exist or is unconscionable. We know that sexual violence can happen to anyone, and we know that sexual violence is a tool of power and control that thrives in the midst of inequity, lack of accessibility, and oppression. As a society and as an anti-violence movement, we don’t adequately care for people with disabilities. Due to the ways that our systems are structured, people with disabilities are disparately impacted by inadequate income, housing, education, food stability, or care, and even more so throughout the pandemic.

Primary prevention is also about centering, empowering, and uplifting people with disabilities. Speaking to my own mistakes in this field, how often do we put outreach to disability-serving organizations on the to-do list and never get to it? How often do we do prevention programming, with curriculum made for, by, and presented to neurotypical people without disabilities? How often do we as organizations have requirements for staff and volunteers that may exclude or drive out people with disabilities? With the help of my incredible colleagues at OAESV (shout-out to Olivia Montgomery, Sarah Ferrato, and Caitlin Burke!), I’ve learned that if we really want to practice primary prevention, we have to let go of the idea that we need to “reach specific communities” (which tends to mean our services are designed around a specific population – likely a population that we are most comfortable with), and rather be intentional in each and every thing that we do to ensure that we are really being proactive about ending violence to those most impacted by it. For me, this has been a reframing. Instead of “maybe consider having disability-serving agencies on your SART” or “here are some tips on a specific subject, and by the way, here’s how to make it accessible”, we might reframe it as “let’s explore how sexual violence most impacts your community, hear directly from survivors most impacted, and build our systems and resources off of that information.”

Notable quotable from my colleague Sarah who assisted me with primary prevention aspects of this post: “Primary prevention cannot happen if we don’t ensure that marginalized folks are included in the brainstorming, decision-making, and implementation processes of education and outreach. Shifting social norms includes shifting community attitudes about who deserves safety, dignity, and respect. If the answer isn’t a resounding ALL PEOPLE, we cannot begin to address the ‘how.’”

Primary prevention also means taking a hard look at our communities and our services and both talking about and engaging in actionable steps to make them more equitable, accessible, and accepting. This can be as big as changing systems, and as small as having conversations with folks in our communities about how different actions and words impact our neighbors with disabilities. It can even mean asking for someone’s Venmo, CashApp, or PayPal to give some extra cash to help them meet a need or compensate them for emotional/intellectual labor.

Does anything about primary prevention need to change to bring disability justice to the world?

Yes – I don’t think there are enough conversations about disability justice within primary prevention. Again, I think we often design things based on a specific population and then as an afterthought add in “others.” For primary prevention to be truly effective, especially around disability justice, we need to be thinking of intersectionality. This also means we need to be creating environments where people with disabilities are included in giving and receiving primary prevention, including exploring the barriers that our organizations have that may impact people with disabilities in employment, volunteering, or consulting. It also means being intentional about recruiting volunteers, employees, leadership, and consultants. Some examples include exploring education (or even heavy lifting!) requirements in job postings, providing employees with plenty of Paid Time Off and other benefits, and paying people for their emotional and intellectual labor.

Additionally, I know I often thought of primary prevention as doing school programming, teaching consent, building developmental assets, etc. These are all great things (find out more about needed changes to these aspects of primary prevention here). However, it’s not the full picture of primary prevention, which also means actively building equity and bridges over barriers, both in our communities and in our systems. We also need to be more open about ableism, eugenics, and social Darwinism in our current state. People with disabilities are not disposable and if we really want to live out our missions within the anti-violence field, we need to be active in centering our care.

Do you have a favorite prevention activity or strategy you use to achieve disability justice?

I participated in a training a few years back where a ground rule was “Step Up/Step Back” (please note that this language is unintentionally ableist and Make Space/Take Space is an alternative with more inclusive language), meaning if you are someone who is normally really quiet, to challenge yourself to speak up in the training, and if you’re normally more talkative to let others speak. I think of this often in terms of primary prevention, anti-oppression work, and disability justice. I like to incorporate intentionality and pause and think, “Do I have something to add here that people need to hear, or is it a time for me to pause and make space?” Often in terms of disability justice, this is a balance of speaking up in spaces where my voice may be received because of my power, privilege, or relationships, and de-centering myself where my presence may be more disempowering to people with disabilities. My advocacy work and collaboration with IDJ have shown me how important it is to center people with disabilities – “nothing about us without us.” In my advocacy, this often looks like hearing what survivors with disabilities are saying and when they feel safe to be centered, it can be a conversation of, “Hey, would you want to get involved with IDJ?”

What are some resources that you have created or that you just love that you want to share (articles, toolkits, etc.)?

There are so many resources that I love but a few favorite or recent resources relevant to disability justice include:

Pod Mapping by Mia Mingus
Adult Advocacy Centers
End Abuse of People with Disabilities
OAESV’s Community Forums facilitated by Olivia Montgomery and Shandra Witherspoon
Sexual Violence in Disasters by NSVRC
And, of course, Indiana Disability Justice

Are you available for consulting?

I don’t do private consulting at this time, but do provide training and technical assistance across Ohio. I highly recommend working with and paying consultants, especially people with disabilities; Black, Indigenous, and People of Color; and survivors.

Some of my favorite consultants/places to connect with consultants at this time include:

Indiana Disability Justice (indisabilityjustice.org, indisabilityjustice@gmail.com)
Sexual Assault Advocacy Network (saancommunity.org)
Ohio Women of Color Caucus
Olga Trujillo (olgatrujillo.com)
Bianca Laureano (biancalaureano.com)
Olivia Montgomery and Breanna Allen (livwoke.com, livwoke@gmail.com)

Resources

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

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