Warning: This article contains discussion of sexual abuse. The content may be difficult for some readers. Please visit https://www.rainn.org/articles/sexual-abuse-people-disabilities
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Julie Payne-Neward understands the value that siblings bring to one another and their families. “A sibling relationship is most people’s longest lasting familial relationship—we often know our siblings longer than our parents,” she said.
This feeling is especially felt for people who have a brother or sister with a disability like Julie. Her sister, Natalie, is now an adult with disabilities.
“What I’ve realized is that their siblings become the care managers, the hands-on caregiver, and it’s forgotten about it.”
Natalie was born in 1982, but at 27 months old, she fell into a coma that ultimately left her with significant damage to her brain leaving her with high support needs.
“Growing up, the focus was on Natalie,” Julie remembered. “It wasn’t until I got married that I realized how different the world is and the injustices in the disability community.”
Experiencing a Terrible Injustice
Julie and her mother primarily cared for Natalie throughout their lives. She lived at home with her mother and younger sister, and attended a day program during the day which she was transported to via bus service. But on April 2, 2012, Julie received devastating news on her commute home from work.
“Natalie had been moaning for months prior. She moans to communicate—she communicates through behavior,” Julie explained. “I got the first call that Natalie was diagnosed with a [sexually] communicable disease. Natalie can’t even open a door on her own. I just remembered freezing. What do you mean she got this disease?”
Julie said that Natalie cannot consent to intimacy. For months prior, Natalie’s medical team had diagnosed her with common female ailments without suspecting abuse. Once she was diagnosed with the communicable disease, it began an arduous process for the whole family.
“We had a terrible experience at the hospital—the staff didn’t not know how to interact with her. She was a victim of a crime, but no one treated her like the victim of a crime,” Julie said.
Natalie’s family filed a police report, which is still open. “We’re never going to know who did this,” Julie said. “I saw my mom age a lot in five years—it broke my heart. She did everything for our family.” They were lost and ultimately signed a “Secret Settlement” with the suspect facility, but nothing changed to address the issues.
Founding The Natalie Project
The grave injustice spurred Julie to a life of advocating for disability justice. Encouraged by Dr. Nora Baladerian, Director of the Disability Without Abuse Project, Julie began blogging about her experiences as a sibling and founded The Natalie Project to champion healing and systemic change for families, with an intellectual or developmentally disabled loved one, experiencing the trauma of sexual abuse.
“I try to talk to as many people as possibly about our experience,” Julie said. “Everybody has a connection to disability. The general public needs to know more about these injustices.”
NPR covered Natalie and her family’s story in their “Abused and Betrayed series.” Julie now serves on the California State Council on Developmental Disabilities and is a Co-Founder & Board Member of The California Sibling Leadership Network, the official California Chapter of The National Sibling Leadership Network. She is also producing a short documentary titled “Natalie” filmed with an inclusive crew with the goal of educating legislators.
“I’m craving to make real change,” Julie said. “We need accountability and transparency—what are the facts and what is the data behind the current environment?”
Being a Sibling to a Person with a Disability
Julie beautifully reflected on what her experience has been as a sibling.
“As a sibling, there’s a feeling of loss that you don’t have a typical sibling relationship. Parents teach you to become another parent. I’ve never had my sister brush my hair. I crave a sisterly bond.”
Even with these feelings, Julie says she has gained so much from her experiences.
“Natalie has taught me so much. It’s so sad, but it happened to right family and the right sister because I’m ticked off enough to do something about it.”
She also greatly values the support she’s received from other siblings.
“Other siblings have been so amazing in my life, and I don’t think I could have gone as far without them,” Julie said. “Nobody understands the milestones or challenges better than another sibling. When we have a win—found housing, picked out clothes on his own—only we get that. We’re each other’s cheerleaders.”
About Project SHINE
People with disabilities deserve access to the fullest range of sexual and reproductive health information and care they need and want. Project SHINE envisions a world where youth with intellectual and developmental disabilities have equitable access to high-quality information and affordable health care, with supportive laws and policies that ensure the greatest autonomy and informed sexual well-being possible across the lifespan. The Project SHINE mission also believes that that family members, including siblings, recognize the value of sexual health and education for their loved ones to ensure a holistic, healthy approach to these issues.
