Supporting Survivors with Cognitive and Developmental Disabilities
Haleigh Rigger looks straight into the camera with a slight smile. Haleigh is wearing a heather gray sweater, is wearing cat eye shaped glasses and has long violet hair.
On June 3rd I had the opportunity to present strategies for supporting survivors with cognitive and developmental disabilities thanks to a partnership between my agency, Indiana Coalition to End Sexual Assault and Human Trafficking (ICESAHT), and the Bureau of Quality Improvement Services (BQIS), a division of the Family and Social Services Administration (FSSA). This training focused on how direct support professionals, case managers, and their leadership teams can best support survivors after they disclose. We also discussed strategies for building trust and rapport and navigating the tricky waters of maintaining a survivor’s privacy while also following state and agency mandates in reporting. Lastly, we invite disability service providers to review their protocols, engage self-advocates in conversations about sexual wellness and violence, and incorporate trauma-informed principles into their organizational culture. You can access the recorded training here and below.
As individuals with developmental disabilities are sexually assaulted at a rate 7x higher than folks without disabilities (NPR, 2018), it is crucial that we in the anti-violence movement partner with caregivers and disability service agencies in responding to and preventing violence against folks with disabilities. Even more important, those of us who are professionals in this movement must center people with disabilities in our anti-violence work and pass the mic to those who are most impacted. It takes multi-disciplinary teams, that are led by and for people with disabilities, to holistically serve survivors and prevent violence from happening in the first place. As my friends and colleagues at Indiana Disability Justice say, “Nothing about us, without us.”
A list of 17 webinars featuring centering disabled people and members of Indiana Disability Justice is available at this link.
The Center for Health Equity (CHE) at Indiana Institute on Disability and Community at Indiana University is working to improve access to and confidence in COVID-19 vaccine among Hoosiers with disabilities and their caregivers to increase their vaccination rates. CHE has compiled resources about COVID-19 and vaccines for Hoosiers with disabilities and their caregivers; you can view and share this resource at the following URL https://www.iidc.indiana.edu/che/resources/covid-19-vaccination/index.html.
There is an opportunity for community members to become involved in advocating for vaccination. Are you a person with a disability, or a caregiver who has been vaccinated and would be willing to share your positive experience? CHE has been posting such story on social media to help increase vaccine confidence. CHE will also create several videos a) sharing experience in vaccination, and b) portraying how being fully vaccinated allows people to participate in more social activities while protecting themselves and people around them. If you are from the following counties and are willing to share your story, please contact Lydia Hamilton at lydhamil@indiana.edu or Don Dumayas at ddumayas@indiana.edu for more information.
(Please Note: The author wrote this piece before the roll-out of the COVID-19 vaccines.)
I never thought of the phrase “may you live in interesting times” as a challenge until recently. But after the last few years and especially 2020, it’s starting to feel at the very least like a challenge if not an outright threat. I’m only thirty, but I am so tired of living in interesting times. I’m also disabled, and historically speaking interesting can generally be defined as ableist to one degree or another. The past few years are no exception, and this last year reached levels of ableism that repeatedly enraged and terrified me. I’ve been disabled for three decades, my entire life. I’m no stranger to discrimination, hatred even, on the basis of a person’s disability. But the absolute disregard for the lives of disabled people I’ve witnessed in the last year is on a whole other level than anything else I’d personally encountered. The worst part is it stems from a complete lack of empathy and an almost prideful ignorance of the disabled community.
People have talked a lot in the last year about what they’ll do “after quarantine is over”, or compared their day-to-day to what it was like before the pandemic started. It took me a while, but I finally realized why conversations like that bothered me. For those people being separated from others, unable to go places, feeling secluded all started with social distancing at the beginning of the year. But for me, and many other disabled people, quarantine life hasn’t differed much from daily life before COVID-19.
Disabled people already live largely secluded lives. So much of society is inaccessible to us. Transportation is either non-existent or difficult to arrange. Most public buildings still aren’t fully accessible, the same is true for most homes.
Beyond accessibility, there is the issue of not having people to connect with in the first place. Family and social circles often shrink or in some cases dissolve completely if non disabled loved ones decide a person’s disability makes them too difficult to deal with. In other cases disabled people may cut ties with harmful people if the relationship has become toxic and they are able to leave.
For these and a myriad of other reasons the daily lives of disabled people resembled life in quarantine long before social distancing became the norm. Personally my reasons for being largely homebound, aside from a lack of accessible transportation, had to do with dealing with poor physical and mental health, both of which had markedly improved before the pandemic. But both before the pandemic, and even now to an extent, there have been people I’ve been able to rely on for help when I needed it.
I recognize the privilege of my situation in saying that. So many disabled people don’t have in-person support, forcing them to find other ways to meet their needs and build relationships. The internet is often a vital tool for accomplishing both. Online, disabled people can find other people who can relate to their experiences; they form relationships, friend groups, whole communities. This has been true for me as well, even more so in the last few years. The people I’ve met online are a lifeline that’s become vital to me.
Another literal lifesaver for myself and others is the ability to shop online, order food, set up delivery of medications or other supplies and engage in other necessary communication. Quarantine saw the use of these and other tools and services boom as non disabled people also took advantage of them. Then there was the sudden availability of work-from-home, online learning and telehealth, all allowing the world to, hypothetically, become more accessible to disabled people than it had been before. In a time when society was experiencing en mass how solitary the disabled existence could be, the world became a little more open to us.
I say a little more, because even with mask mandates and stay at home orders, too many people decided to risk their lives and the lives of others by refusing to take the proper precautions. From the beginning, politicians and journalists alike repeated the damming line “only the vulnerable are at risk”. Too many people decided that didn’t mean them, so they didn’t care. This endangered those who should have been protected by virtue of their living situation. Yet COVID-19 cases in long-term care facilities account for nearly half the reported deaths.
Now with the vaccine being distributed there’s even more talk of “when things get back to normal”. No one seems to realize the “normal” they’re talking about is most likely lost. Oh sure some things will go back to the way they were, but it will be to disabled people’s detriment. Telehealth is already being phased back out. It wouldn’t surprise me if work-from-home and online learning opportunities disappeared as well. The opportunities that could have been open to disabled people will vanish like they never existed.
This is how society seems to work. Regardless of the work of the disabled community to fight for our rights and equity, we are always the second thought, “other”, expected loss. In this way disabled people are more easily forgotten about, out of sight out of mind. Turns out marginalization is a pretty effective practice to guarantee social distance.
I recognize how bitter and jaded I’m coming across saying all this. Let me assure you I’m less angry than I sound. Mostly I think I’m afraid. I’m afraid that what progress we’ve made might be all there ever is, and that all of it could be stripped away. Even more, I’m afraid no one else cares.
We’re facing possibly the largest disabling event in recent history and it seems we haven’t grasped the implications of this as a collective yet. People have already been permanently disabled by COVID-19 and guaranteed there will be scores more. The long-term effects are still largely unknown. We don’t have the infrastructure or other resources to support the current disabled community, let alone the influx of newly disabled people we’re about to see. This will leave people in deeper need of aid and more secluded from that aid than ever before.
The disabled community is one of the most resilient, supportive and dynamic I’ve ever been a part of. The accomplishments of my disabled peers is continuously a source of joy and pride for me. But I worry about our ability to cope with the magnitude of the loss our community has sustained from COVID-19 and the knowledge that so many considered that loss acceptable in exchange for returning to their “normal”.
Simply put, we were told from the beginning to maintain social distance, so I will. I won’t go away completely, and I refuse to be silent. But putting distance between myself and people bent on doing me harm feels like the best tool for self-preservation I have, at least for now.
I’ve been wondering if the answer isn’t staring me right in the face. The best way to cope post-COVID-19 may be to continue with safety procedures. For instance, no gatherings of large groups of people, especially any who were ok with sacrificing me and others like me. When out in public, wear a mask of calm and collectedness to hide simmering rage at ableists I encounter. And most importantly, staying a minimum of six feet away from t? said ableists to lessen the likelihood of arguments that could escalate.
Syd Chasteen
Name: Syd Chasteen
Bio: I am a queer disability justice activist born, raised and living in southern Indiana. I am a 30 year old, full-time wheelchair user with Spina Bifida and Hydrocephalus, and self diagnosed Autistic. I am a graduate of Ball State University and I’ve been married for 6 years. I started my blog, BifInMediasRes.com as a way to share my experiences as a disabled person. As an advocate for both myself and the wider disabled community I am always looking for ways to improve my advocacy and connect with others in the community.
Shelby Wade (she/her) is facing the camera and smiling and she is standing in front of a rock wall. Shelby is a white woman with long red hair and she is wearing a dark top with white designs.
What do you like to do for fun? Hobbies?
Play with my dog Clyde, play cards with my Husband, watch documentaries, and explore the Olympic National Forest which is right in my back yard!
What does disability justice mean to you as you practice primary prevention?
From my experience, this comes down to two things: Inclusive services and education, and dispelling myths about the autonomy and sexuality of people with disabilities.
What are some resources that you have created or that you just love that you want to share (articles, toolkits, etc.)?
Do you have a favorite prevention activity or strategy you use to achieve disability justice?
Education both within the community and to their counterparts. Because violence, especially gender violence, is a matter of control, ableism adds a further layer to our prevention efforts. If we do not make dismantling ableism, and other constructs of power, a core tenant of violence prevention education, we will not do justice for this community. In addition, providing comprehensive sex education to people with disabilities that incorporates components of self-advocacy and what constitutes abuse, is critically important.
I would also love to share a unique work group that operates as a recovery practice for all survivors of violence, but is especially empowering for survivors who are disabled. As a way to practice reclaiming control, consent, and respect, survivors work with service dogs; giving commands and watching the animals respond to their request produces a chance for survivors to reclaim their autonomy in a therapeutic environment.
Does anything about primary prevention need to change to bring disability justice to the world?
Many community-placed organizations fall into the trap of what Vu Le has called trickle-down-community-engagement. Vu Le describes this as organizations who (1) offer services because they can, not because they were asked for or needed, (2) educate and advertise their services but find that sectors of their community still choose not to engage, and (3) either do not measure their impact, or when they do, find little to no successful impact. To put it simply, “you can’t just give three drops of water to your rainbow carrots, wonder why they are not growing, and then complain about the lack of color in your salad” (Vu Le).
Earlier, I emphasized the description of these organizations as community-placed. This categorization comes from one of my professors at Harvard, Harry Harding, who discussed the difference between organizations as described above, who are simply placed in a community, versus organizations and services that are based in a community. Community-based organizations are informed by their community, intentional about services, and inclusive both within the organization and in how they discuss the issue and engage with their community. In order for sexual violence prevention to be effective within the disabled community, we must recognize that people with disabilities can make their own decisions and that they are not sexless.
Harmful myths often close the door to working with the community to educate about consent, self-advocacy, and safe sex. An example of this is demonstrated in a South Carolina middle school who invited my prior organization (shortly before I worked there) to come and give sexual violence prevention talks to their students. They had the prevention educator teach the same presentation to one grade at a time, one period after the next, the whole day. However, this disrupted the students in special education as it conflicted with their schedule. So instead of finding a different option, or tailoring the presentation to be inclusive of the learning styles of ALL students, the school had the special education class sit in on every single talk, the entire day. Not only did the school send the message to the special education students, and the rest of the school, that they were an after-thought, but they did not give the prevention educator the information and tools needed to provide a presentation that worked with all student’s needs. This event, reported to me by my organization when I came on board, made it evident how primary prevention efforts were missing the mark in serving the disabled community.
Where you practice primary prevention & disability Justice (location, organization, which levels of the SEM, typically):
I worked in primary prevention of sexual violence for three years as the Prevention and Education Coordinator for an adult crisis center in Charleston, SC. I also served for two years as the Chair of a three-county wide Sexual Assault Response Team (SART) in the low-country of South Carolina. Currently, I work for the Medical University of South Carolina’s National Crime Victim Center which is housed in their Department of Psychiatry. In my role as the Program Coordinator, I work on Project BEST, a state-wide collaborative effort to use innovative community-based dissemination, training, and implementation methods to dramatically increase the capacity of every community in South Carolina to deliver evidence-supported mental health treatments (ESTs) to every abused and traumatized child who needs them. In addition, I work in a similar capacity under a grant for the National Mass Violence Victimization Resource Center’s Training and Technical Assistance division. My violence prevention and advocacy work has continued both within this work and outside it as I independently pursue research on community-based primary prevention, response, and resilience.
Are you available for consulting?
Yes! Working with diverse populations eager to learn about and collaborate on program improvement and community engagement is my passion. My area of concentration focuses on violence prevention, particularly sexual violence, and how we can create intentional, equitable, and sustainable community prevention and response strategies and services.
Shelby first worked with people with disabilities in high school as a peer support for Integrated Learning Students with a range of disabilities from various cancers; autism spectrum disorders; blind, deaf, and hard of hearing; and many others. These students helped spark her interest in working with the community. Following high school, she worked with cognitively impaired students at supplemental education centers before becoming a behavior technician at an autism services organization. During college, earning a bachelors in sociology from Sonoma State in CA, Shelby became the lead behavior technician, the community group lead, and the trainer of all new employees on Applied Behavior Analysis (ABA) for her organization. She won awards for passion and for Interventionist of The Year. While she enjoyed the work, Shelby wanted to move on to spaces that allowed her to empower people with disabilities from a violence prevention standpoint, something she connected with through personal experiences. After moving across the country, Shelby began working at a local rape crisis center in South Carolina. There she learned where prevention work was failing the disabled community and where disability justice organizations needed support in violence prevention. During this time, she served as the chair of a three-county-wide sexual assault response team (SART) and went back to school to get her graduate certificate in Nonprofit Management from Harvard.
Shelby currently works for the National Crime Victims Center on two grants, one with Project BEST which seeks to provide evidence-based treatments to children and their families across South Carolina, and another under the National Mass Violence Victimization Resource Center where she is helping communities prepare for, respond to, and build resiliency after a mass violence event. Shelby’s passion for this work continues in her free time as she continues to research prevention efforts, write papers, teach, and provide consultation. Currently, Shelby is focused on neurobiology of trauma; inclusion as it relates to community engagement in violence prevention; program improvement in sexual violence organizations; and non-acute comprehensive medical advocacy for survivors of sexual violence.
A bit about her personally… Shelby is the wife of 8 years to her amazing partner, Jacob, who is an active duty member of the US Coast Guard. She is a dog mom to a 3-year-old, rescued, blue heeler mix named Clyde who is the best good boy there is. Shelby lives in the Pacific Northwest and enjoys going on hikes, listening to records, watching documentaries, and taking bubble baths!
Shelby Wade is the author of her interview. Cierra Olivia Thomas Williams is the interviewer and posted this to IDJ.
