Every year at the World Health Assembly, the World Health Organization (WHO) convenes delegations from 194 member states to discuss the state of global health policy and goals for the future, working to usher in greater health and well-being for all.
This year, as leaders came together for the 79th iteration of the event to advance solutions for greater health equity, the health of people with intellectual and developmental disabilities was an area of focus. This effort was led in part by Anjela Jenkins, Senior Director, Global Inclusive Health Advocacy, as part of Special Olympics’ participation in the WHO Disability Health Equity Network. It featured Special Olympics Switzerland athlete Pearl Lüthy, who presented in her role as a Down Syndrome International ambassador and self-advocate with Insieme21, alongside representatives from the WHO, the International Cerebral Palsy Society, the International Disability and Development Consortium, Disability Rights India Foundation, and others, at a side event titled, “Connecting for Change: Integrating Disability Equity Across Global Health Agendas” hosted by the Civil Society Engagement Mechanism for UHC2030.
The session underscored the vital importance of inclusive health and the need for both health systems and partner organizations to work in tandem to advocate for and implement the changes required to make health systems more inclusive for people with disabilities.
The session was punctuated by Pearl’s powerful remarks, which reflected her lived experiences accessing healthcare, particularly her interactions with doctors as a person with an intellectual and developmental disability.
Reflecting on one particularly jarring experience, in which a lack of communication and bedside manner left her feeling isolated, Pearl shared: “I was very sick and exhausted for a couple of weeks, and my parents took me to the hospital to find out what was wrong. After a couple of hours and a lot of blood tests, a nurse came and lifted my hospital gown and injected me in my stomach. When my parents asked what was happening, the nurse gave no information and said that would be my life now and we all should get used to it.”
Pearl’s experience of unease and distrust with healthcare providers is reflective of many experiences people with intellectual and developmental disabilities face when interacting with healthcare workers who are ill-equipped to communicate with and provide appropriate care to these patients. Citing a Down Syndrome International report, Pearl shared that only 29% of participants with Down syndrome said doctors spoke to them in a way they could understand, and only 38% said that doctors were helpful—for example, by allowing more time during appointments or using simpler language. These findings echo those represented in the Special Olympics Global Health Report: Focusing on the Invisible, which found that only 52% of people with intellectual and developmental disabilities surveyed said they always understand their health care provider.
Reflecting on these statistics and her own experience, Pearl issued the following call to action: “Health care workers—doctors and nurses—need to learn how to talk to people with disabilities. They need to use easy words for us to understand. They need to give us extra time. They need to ask us, not the person next to us. And based on my experience, they need to ask us before they do anything to our body.”
Moving beyond her personal experiences, Pearl also underscored the importance of ensuring that people with disabilities have a seat at the table in all health policy discussions. By sharing their lived experiences, they can help shape the policies and practices that influence their health and ultimately improve day-to-day care. “When you make a plan for health, ask us. When you write a policy, ask us. When you decide what training health workers need, ask us. There is a saying we use a lot: ‘Nothing about us without us.’ It’s simple. If you’re making decisions about our health, we should be in the room.”
Anjela Jenkins built on Pearl’s remarks by highlighting the work of the Disability Health Equity Network (DHEN) to raise awareness of the health inequities faced by people with disabilities in global health systems and to translate that awareness into coordinated advocacy efforts that drive sustainable policy and systems change. The DHEN, was inaugurated in November 2025 with 31 member states, 13 intergovernmental organizations, 72 civil society organizations, 32 academic entities, and four private sector organizations, all working toward a shared goal of health equity for persons with disabilities globally.
Jenkins chairs the Network’s second workstream, which focuses on elevating health equity for persons with disabilities as a political priority in health, which includes ensuring that global leaders recognize the importance of inclusive health within the broader global health agenda.
The inclusion of this session alongside the World Health Assembly, along with the participation of 152 stakeholders, marks an important step forward for inclusive health. However, as Pearl emphasized, there is still a long way to go to ensure that health systems are truly inclusive for everyone, regardless of disability.
“If nobody asks me, I’m not part of my own healthcare,” Pearl shared. “That’s not health for everyone. That’s just health for some people.”
