​Quality of Life Spotlight:​ BACKBONES

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backbonesAs a young woman living with a spinal cord injury, Reveca Torres struggled to find peer support.

“It wasn’t until I was in college that I started to meet other women who faced the same challenges as me. Many women I met also wanted to connect with other women living with a spinal cord injury,” says Torres, who sustained a C5-7 incomplete injury in a 1994 car accident at the age of 13.

In 2009, Torres started BACKBONES to help others gain better access to the resources, information and support she struggled to find herself. Initially, the organization was focused on peer support groups, then grew to include more social, activity-based programs. BACKBONES now helps over 900 people reach personal goals and live full, active lives.

“We wanted to create inclusive spaces for participants to feel welcome and make meaningful connections,” says Torres. “Through trial and error, we have learned what types of programs interest people of all abilities. Financial accessibility is also important, so BACKBONES events are low-cost or free.”

In 2020, Torres met Emilie Lacy, a doctoral candidate in Disability Studies at the University of Illinois at Chicago. As part of her research and fellowship program, Lacy reached out to BACKBONES to find ways to help promote SCI women’s health.

“With a large percentage of those injured being men and the limited research on women’s health with SCI, there is an opportunity to address these health disparities and lack of information for women with SCI,” says Lacy. “It is important for women to have access to peer support and educational opportunities that can assist them to increase their community participation, self-esteem and confidence.”

Together, Lacy and Torres developed the Women & SCI Health Program, which includes educational webinars, small group discussions, social outings and fitness empowerment classes. To help support the initiative, BACKBONES received a $25,000 Christopher & Dana Reeve Foundation Quality of Life grant.

“The first major goal of this project was to form a community, both in-person and virtual, for women with SCI through formal and informal discussions and activities,” says Torres. “Secondly, we wanted to increase knowledge of women’s health for those living with SCI. The third major goal was to increase quality of life through fitness and socialization. The final goal was to promote an interest in women’s health and SCI in hopes it would lead to more research within the field.”

A primary component of the Women & SCI Health Program was creating Health Talks, a monthly webinar series with a featured guest speaker or panel of women with disabilities focused on topics such as access to healthcare, self-esteem and body image, sex and disability, addressing abuse, aging and menopause, pregnancy, motherhood, navigating a partner and a caregiver, self-care and more.

“We wanted to take a community-based approach, so we started with two hour-long listening sessions where we asked a group of women what topics they wanted to learn about, who they wanted to learn from and what type of format or setting they preferred,” says Lacy. “The women reported that they wished to meet other women with SCI and feel a sense of community where they could interact and learn from each other.”

The free webinars are available to view live on Zoom or recorded on the BACKBONES YouTube channel. The total number of viewers of the 12 webinars to date is over 2000 participants. The self-esteem and body image webinar has been the most popular, with over 900 views.

“Many of the topics covered are in areas women might not be ready to talk about when they are still in the hospital, and then these topics are not easy to find information about specifically as they relate to women with SCI,” says Torres. “It is so important to provide accurate and relevant information. This series gives them a chance to learn more from experts in the field and their peers. Many of our sessions have received a great response, which confirms that women want and need this information.”

A short survey is emailed following each event, and the feedback is used to develop future content. The webinars are also followed a week later by a one-hour Zoom small-group discussion as an opportunity to unpack and process the webinar content along with any other topics that surface.

“These conversations are usually attended by 10 or so women living with SCI and are designed to enhance the experience by providing a safe space to ask questions and seek support,” says Lacy, who helps facilitate the conversations. To date, over 30 individual women have attended these follow-up meetings.

The program also includes quarterly in-person social outings hosted in the Chicago area, such as a night at the theater, a day at the zoo or any other activity the women want to do together. In addition, a weekly fitness empowerment class is offered on Zoom and in person at the Academy of Strength Chicago with a rotating schedule of activities such as boxing, Zumba, strengthening, conditioning and yoga.

“The webinars are a great way to start a conversation, and the small-group discussions, social outings and fitness classes offer a way to enhance connections,” says Lacy. “The women are building relationships as a community by sharing information and resources. The classes and outings help increase socialization and decrease feelings of isolation for better health outcomes.”

BACKBONES uses its email and social media channels to share information about the events. They also partner with regional and national SCI organizations to get the details about program opportunities to a broader SCI community.

“To date, more than 200 women have participated in the Women & SCI Health Program,” says Torres. “I’m so grateful to be able to empower women to advocate for themselves. I hope to encourage women in other cities to watch our webinars and then plan social outings in their cities.”

Torres continues, “None of this would be possible without the Reeve Foundation grant. I was injured a couple of months before Christopher Reeve, and I followed his story closely. I have used and recommended the Reeve Foundation resources for years. I’m thrilled to now be part of offering these opportunities to the SCI community thanks to the foundation’s support.”