Disabled Young Adults Living Longer Now Face a New Challenge: Invisibility in Intimacy

Young adults with life-shortening conditions who once faced certain death are now demanding visibility in conversations about intimacy, yet remain systematically excluded from essential education and support.

Over 400 life-shortening conditions now affect young people who historically were not expected to survive into adulthood. Medical advancements have extended life expectancy for conditions such as cancer, cystic fibrosis, and Duchenne muscular dystrophy.

However, these young adults report being excluded from sex education and facing disablist assumptions about their sexuality.

Lisa Lock, a researcher involved in the 15-year collaboration, said:

"Disabled people frequently reported feeling marginalized, infantilized and treated as asexual."

Participants in the study shared personal accounts of how relationships impacted their well-being. One participant described how being in a relationship provided emotional purpose:

"Being in a relationship gave him a reason to live."

Another noted the mental health benefits:

"It helped him stay healthy by reducing loneliness and depression."

The collaboration produced co-created resources addressing consent, mental capacity, and inclusive sex education for disabled youth.

These materials aim to challenge institutionalized silence around their sexual rights. However, safeguarding practices often unintentionally reinforce this silence, perpetuating systemic neglect.

The findings highlight the need for systemic change in how medical and educational institutions approach the needs of disabled young adults. The study does not provide clinical guidance but underscores the importance of policy and institutional reform.

⚠️ LEGAL DISCLAIMER: It is for informational purposes only. It never substitutes for professional medical advice, diagnosis, or treatment. Always consult your doctor regarding any questions about your health.