Qualitative Findings from Interview and Listening Sessions
“As we conducted our work, we found that, although everyone had a unique experience, there were themes in terms of the problems they faced.”
Our sessions were peer-led and peer-designed. In response to the questions posed by peer facilitators, the participants shared best practices, resources and ideas for advocacy going forward. Many participants were grateful for the opportunity to share their struggles and how they dealt with their challenges. Participants and facilitators also had the opportunity to bond with each other peer to peer.
Based on our sessions, we identified eight major patterns, or themes. By and large, we relied on qualitative narratives from our participants. We centered findings in participants’ direct experiences as disabled gun violence survivors in Chicago. As we conducted our work, we found that although everyone had a unique experience, there tended to be themes in terms of problems they faced. We believe that these themes offer opportunities for framing both advocacy and services at Access Living. The themes we identified inform our program recommendations in the next section.
Due to the need for individual confidentiality, we present the themes in broad terms. Some participants expressed fear of retaliation or death if specifics about their circumstances were shared.
Theme 1: Criminalization and Racism
Regardless of race and gender, the primary experience every participant shared after their shooting was a feeling of criminalization. Across the board, they felt that health care, law enforcement and their communities were unprepared to handle someone disabled by gun violence and assumed criminal participation on their part.
Most listening session participants also reported experiencing systemic racism in their time at the hospitals and at some rehab facilities. They were treated poorly by the nurses and hospital staff and felt criminalized, as if they were somehow complicit in the illegal behavior that led to their injury.
Theme 2: Youth at Time of Injury and Time Delay in Sharing Stories
The average age of the survivors at the time of injury was 13-19 years old. One survivor had been shot at the age of 5 years old. Many of the people we interviewed had been injured 10 to 20 years earlier. However, because of the social stigma of having been shot, they were sharing their experience publicly for the first time since their injury.
Theme 3: Immigration Status or Lack of Status
In the latter rounds, we spoke with several people of varying immigration and insurance status. These interviewees experienced challenges that were specific to not having status, or status that did not qualify for services. They also experienced challenges in follow-up care due to lack of insurance. For several, the language barrier made their experience even more complicated. People did not trust medical professionals who could not speak their preferred language and/or who were not culturally competent. For some, the U.S. health care system was also generally unfamiliar.
Theme 4: Health Care Struggles
The greatest influencing factor in interviewees’ recovery was the quality and duration of 1) health care services they received after their initial injury and 2) rehabilitation care. Those who were minors covered by a parent’s insurance had much better health care and rehab than those who were adults or under-insured at the time of their injury.
For many, as they aged into adulthood, their care drastically changed based on whether they had quality health insurance. Many of the survivors did not have insurance as adults, and they reported their medical care coverage as “horrible.”
Also, in the hospital and rehab, many experienced bed sores when they returned home because they had not been given proper aftercare instructions, or they didn’t have the in-home support services to manage their care. In some cases, the bed sores were severe and led to additional hospital visits.
The participants also repeatedly expressed a need for someone (ideally with lived experience) who could help advocate for their needs while in the hospital or in rehab or therapy.
Theme 5: Differences Between Male and Female Survivors
Our participants identified as either men or women; no one identified as nonbinary. We met with a group of women who had informally created their own support group. The women in this group had had no peer support at all after their injury and came together through their community networks. They shared the unique challenges they had as adults as new wheelchair users while also seeking full lives as women with romantic relationships, maintaining healthy sex lives, having or not having children, and in seeking reproductive health care. Both male and female participants noted they did not get reproductive health information after their injury and as they aged. Their doctors often assumed that reproductive health resources were not necessary information. The participants felt this information was very important and would have been beneficial on their journey of adjustment as a newly disabled person.
The men participating in the group listening sessions also shared how positive it felt to talk with other men with the same lived experience. We repeatedly heard how they all appreciated the opportunity to share with others with the same experience. In most cases, this was their first time receiving any peer support.
Theme 6: Mental Health Struggles
Many participants mentioned having to adjust to a new normal. They had various experiences, including falling into depression and substance misuse. However, survivors reported that exploring alternatives to their passions and finding new parts of their identity helped in their recovery process. Many survivors shared that learning to focus on what they can do and leaning on their communities (spiritual groups, religious groups, ethnicity/racial communities, etc.) for support was significant to their healing.
One participant mentioned that they needed support to adjust to their lifestyle changes at the beginning of their injury. When they started acclimating, they felt a significant need for mental health support. One survivor mentioned that it was important to see others living independently so they knew they could, too.
Theme 7: Family and Friend Support
Each survivor’s family handled their loved one’s injury differently. Some families treated those injured as fragile. Other families challenged their disabled family member, so they would become “strong and independent.” Participants frequently mentioned the need for families or friends to also have access to mental health services.
All participants also shared that they would often put on a brave face for their families but privately cry, and they felt deeply depressed and alone. Some men shared that they felt they had to hold everything together and continue to be their family’s financial supporter and provider, which was difficult at times.
Peer support and mental health services appeared to be the most significant gap in services needed. One woman shared that she was told she would never walk again; she did not believe that. After five years, she finally realized that was the reality she needed to face.
Theme 8: Access to Housing and Independent Living Resources
Systematically, survivors of gun violence who have become disabled have many of the same needs as other disabled people: access to affordable and accessible family housing, peer support, mental health support, and assistance with medical supplies not covered by insurance.
Multiple people experienced unwanted housing moves because their homes could not accommodate them once they became disabled. One man shared that he had to live in his family members’ living room for a long time to heal before he could even look for an accessible apartment and move forward with his life. Another survivor had to split her family up between two homes because her apartment was on the third floor at the time of her injury.
Participants consistently stated that peer support groups would help them on their journey. They wanted support in developing their self-knowledge as a person with a disability, and help finding people who could provide help with daily personal care and household tasks. They needed full coverage for their daily medical supplies, and they wanted access to wheelchairs and assistive devices created by people with lived experience of disability.