Knowledge is Power: ICI, Partners Launch New Sexuality Series for OPWDD

Shanell Davis is an advocacy support professional in Buffalo, New York. She speaks in one of the videos.

A powerful new video series features adults with disabilities speaking frankly about sexual self-advocacy.

The University of Minnesota’s Institute on Community Integration collaborated with Elevatus Training and the Self Advocacy Association of New York State (SANYS ) to create the series envisioned and funded by New York’s Office of People With Developmental Disabilities (OPWDD) as part of a larger series on empowerment.

“Having information about sexuality helps us understand ourselves and what we want in our relationships,” Shanell Davis (pictured), an advocacy support professional with People Inc. in Buffalo, New York, says in one video.

“I wish somebody had told me straight up, ‘Your mom and dad might not be comfortable with things, but you can have the same life as anybody else. You can get married, you can have kids, you can do all those kinds of things,’” says Gwen Squire, another advocacy support professional who appears in the videos.

Topics in the four-part series include clear descriptions of sexual terms, consent, and sexual self-advocacy. The series continues a years-long effort to empower people with developmental disabilities in partnership with self-advocates, said Mary K. O’Neill, principal psychologist with OPWDD’s Bureau of Clinical Project Management in the Division of Statewide Services.

“Recently, we’ve sought to find creative ways to connect communities with powerful messages coming directly from the people we serve. We’ve worked to put their stories and faces center stage,” O’Neill said. “These videos are part of an initiative to hear directly the voices and experiences of people with developmental disabilities, to continue to break down stigma and barriers, and to make positive and reinforcing messages accessible through social media. When we approached Elevatus Training to work with us on a series of projects, we were excited to find a partner who could also see our vision.”

In May, Elevatus Founder Katherine McLaughlin presented the series as part of her keynote address at the 36th Annual Developmental Disabilities Day in Niagara Falls, New York.

“The messages in the videos are just so powerful: Ignorance is not bliss. Knowledge is power. Knowledge is protection,” McLaughlin said. “It really is about empowerment and people making the choices that are right for them and about it being OK to ask questions. Have fun. Be safe. Know your rights.”

Davis, who also attended the DD Day conference, said feedback was very strong.

“I definitely think it’s going to help a lot of people to be more comfortable talking about sex and sexuality,” Davis said. “People with disabilities need to hear that it’s OK to say ‘no.’ A lot of people with disabilities will say ‘yes’ just to please people or not make them upset.”

In an earlier session to unveil the videos to many of the self-advocates who appeared in the series, McLaughlin said she was struck most by the group’s ideas for sharing the videos beyond people with disabilities.

Davis agreed, saying family members, direct support professionals, healthcare team members, and others would benefit.

“A lot of people without disabilities are uncomfortable about people with disabilities having sexual feelings, or they just think they can’t experience that, so it’s good for them to hear we have the same feelings and attractions they do,” she said.

ICI’s Jerry Smith and Pete McCauley produced the videos.

“As a small business, it’s hard to be able to afford really nice products, so to have OPWDD’s support to have these high-quality videos was gratifying,” said McLaughlin. “It makes such a difference.”

Sophia Roberts, SANYS regional coordinator, said SANYS’s work to find and support people with disabilities to appear in the videos has led to further conversations about promoting awareness and providing education.

“There’s been a lot of excitement around these videos as we’ve shared them at conferences and meetings,” Roberts said. “They are opening up a conversation amongst people with developmental disabilities. Sometimes, in self-advocacy, people will see things and think they don’t apply to them, but in the videos, there are people with a wide variety of disabilities, relationship experiences, and cultural backgrounds. The people who participated in the videos all said they were very glad they did it because this is an important part of life, and it’s real for all of us.”

Given the significant number of people with IDD who have been sexually abused, she said, the awareness videos help people envision self-esteem and the confidence to speak up about the way they are treated.

“When people are centering themselves as sexual beings, they are more confident to ask for support for speaking up and to realize that if they are sexually assaulted, it is not their fault,” she said. “The videos focus on that empowerment.”

O’Neill said OPWDD was pleased with the feedback and that those in the videos took well-deserved pride in their advocacy efforts.

“People have affirmed that this is how they feel, this is what they wish others knew about them, and how excited they are to be represented by those they can relate to,” she said. “These videos and other similar projects OPWDD is working on help give people with disabilities the opportunity to speak to communities directly, to represent and advocate for themselves in an empowering and supported way. There are often challenges for people with disabilities to speak their truth and be heard, so these videos hopefully offer a way for caregivers and loved ones to hear these thoughts and desires.

“Some of the feedback we’ve heard is ‘I just didn’t know my daughter felt that way,’ or ‘It didn’t occur to me that the person I support wanted that.’ So hopefully, the videos will open up dialogue and encourage loved ones and caregivers to support people in ways they may not have thought to do or felt comfortable doing before.”