"Nothing About Us Without Us" Remains Relevant in 2026, Especially for Intellectual & Developmental Disabilities (IDDs)
Why access ≠ inclusion, explained from a human rights lens
According to data from the World Health Organization, an estimated 1.3 billion people experience some form of disability. This amounts to nearly 16% of the global population, or 1 in 6 individuals. For intellectual and developmental disabilities (IDDs), this number amounts to one in thirty-three births worldwide (NICHD, 2021).
Regarding the modern disability rights movement, the phrase “Nothing About Us Without Us” is often attributed to activists from South Africa in the early 1990s, though the phrase itself dates back much further (Zarkhosh, 2024). It was meant to serve as a call to action for inclusion in decision-making at all levels of society.
Today, “Nothing About Us Without Us” has expanded to represent various other marginalized groups, but the premise still remains a critical struggle for those with IDDs and their caregivers.
A Brief History of the Disability Rights Movement
In the U.S., the disability rights movement was at its peak between the 1970s and 1990s, which coincided with specific landmark pieces of legislation. In 1973, Section 504 of the Rehabilitation Act was passed, which provided civil rights protections to all people with disabilities within any public programs and services (ex: schools, hospitals) that received federal funding.
However, Section 504 was not effectively enforced until 1977, after significant protests led by influential activists such as Judy Heumann (Zarkhosh, 2024). These champions of disability rights advocated for equal opportunity, accessibility, and justice - key tenets of human rights protections.
Ultimately, Section 504 of the Rehabilitation Act paved the way for the signing of the Americans with Disabilities Act (ADA) in 1990. It was the world’s first comprehensive civil rights law for those with disabilities, and ultimately extended Section 504 more broadly to protect against discrimination in other sectors (U.S. Department of Justice).
Regarding human rights, the United Nations passed the Convention on the Rights of Persons with Disabilities (CRPD) in 2006, a landmark treaty and the first human rights convention of the 21st century. It is regarded as the one of most rapidly signed treaties to date, with over 180 member states. The CRPD shifts the approach to disability as a key human rights protection, requiring member states to ensure the full and equal enjoyment of rights such as accessibility, personal mobility, health, employment, and education.
It is relevant to note that the United States has signed but not ratified the CRPD. President Obama signed the treaty in 2009, but faced challenges in the U.S. Senate to receive the ⅔ majority needed to ratify the treaty. The major opposition within the Senate stated that the federal laws such as the ADA were sufficient, and ratifying the CRPD could complicate national sovereignty - a pattern that would persist in US-UN interactions for years to come.
Currently, one of the most pressing challenges facing the disabled community relates to the attempted dismantling of the United States Department of Education (Long, 2025). This is because the Office of Special Education Programs (OSEP) is responsible for supplementing state resources for nearly 7.5 million students with disabilities nationwide.
Dismantling the department of education and moving special education funding to the Department of Health and Human Services as proposed by the Trump administration would put student needs in jeopardy. In particular, the 1975 Individuals with Disabilities Education Act (IDEA) requires that children with disabilities have free appropriate public education. The Department of Education is meant to enforce this policy, as all public school students with disabilities have the right to individualized education programs (IEPS) that support their needs. Furthermore, funding by the Department of Education helps students with disabilities develop the life skills necessary to transition into adulthood - which is critical for the independence of students with IDDs.
Intellectual & Developmental Disabilities (IDDs)
Intellectual and developmental disabilities vary widely from person to person. As previously mentioned, IDDs are commonly present in about 2-3% of the population, or about 1 in 33 births (NICHD, 2021). One particular type of IDD, Down Syndrome, occurs somewhere between 1 in 444 and 1 in 1,300 births (Fidler et. al, 2022).
IDDs can be present at the time of birth, or can start any time before a child turns eighteen years old. Those with intellectual disabilities usually demonstrate differences in intellectual functioning and adaptive behavior, both of which affect one’s ability to learn, problem solve, and interact socially with others. Developmental disabilities encompass an even broader category, which can include differences in intellectual and/or physical development. Some examples of developmental disabilities include autism, cerebral palsy, Down Syndrome, spina bifida, and fetal alcohol syndrome (NICHD, 2021).
As discussed in Episode 10 of the Mindbridge Podcast, people with IDDs face a unique and additional set of obstacles. For example, despite being one of the most common chromosomal disorders, Down Syndrome remains to be one of the least funded major genetic conditions by the U.S. National Institute of Health (Global Down Syndrome Foundation).
Furthermore, research on Down Syndrome is incredibly scarce due to assumptions of mental capacity of participants, which can lead to an over-reliance on proxies and professionals to speak on their behalf. Some adults with Down Syndrome have the cognitive awareness to provide informed consent themselves, but in many cases a caregiver or parent ultimately is the one to decide (Fidler et. al, 2022). However, being spoken for is not the same as being included.
How We Think About Disability Shapes Who Gets Heard
The field of psychology has demonstrated that perception is incredibly powerful in shaping our thoughts and behavior - and how we perceive disability is no different (Olkin, 2022).
Early understandings relied on what is now known as the medical model, which viewed disability as an inherently pathological impairment to be fixed as close to “normal” as possible. This model views specialized professionals as the ultimate experts. Though absolutely paternalistic and perhaps even infantilizing, significant scientific breakthroughs have occurred under this medical model of thinking.
To contrast, the moral model of disability has deeper historical roots, existing long before modern medicine. Under this model, disability is seen as being related to the character or spiritual karma of someone or their family. Within this, disability could be viewed as either a blessed mark of honor or one of shame and stigma.
Today, academic discourse about disability uses a social model that centers the relevance of the environment. Like any other marker of identity (such as gender or ethnicity), ability status is an intersecting aspect of the human experience. From this, any existing barriers disabled people face are a result of the social or physical environment - not the disability itself. Therefore, solutions are community-driven such as changing societal perceptions to reduce ableism and discrimination.
“The way that we’ve implemented things is based on a medical model of disability. It’s based on pointing out things that are wrong with people instead of pointing out things that are right … Disability isn’t a problem that we need to fix - society is the problem.”
- Kate Long, Episode 10 of the Mindbridge Podcast
A Human Rights Model of Disability & Meaningful Inclusion
It is from the social model of disability that the Convention on the Rights of Persons with Disabilities (CRPD) was born. This human rights model of disability builds on the general premise that disability is a social construct, while also noting the inherent worth of all human beings regardless of their health or body status. This means that under the CRPD, disability is valued as part of human diversity and variation, which includes the relevance of intersectional identities (Degener, 2016).
What does the human rights disability model look like in practice, especially for those with intellectual and developmental disabilities? A recent campaign by CoorDown aimed to show that people with IDDs are experts in their own lives, and believing in their inherent worth and capacity are vital to independence.
The video campaign, “Assume That I Can”, was shared to celebrate World Down Syndrome Day in 2024. Coordown is an organization that works to raise awareness for individual capacity, promote inclusion, and share experiences of those with Down Syndrome.
Research is another avenue in which the human rights model of disability is paramount (Gutterman, 2025; Browne & Dorris, 2022; Fidler et. al, 2022). Under the UN CRPD, the disabled community - especially those with IDDs - should be included with dignity in all public and medical endeavors related to their disability, circling back to the premise of “Nothing About Us Without Us”.
“When we listen to voices with people with intellectual disabilities – I guess we’ve got to just trust our relationships and design systems with care, create spaces where people don’t just survive, they truly belong and have meaningful connected relationships within communities”
- Siobhán Bogle, Episode 10 of the Mindbridge Podcast
Research should be diverse, inclusive, accessible, and sustainable - and this requires funding. Funding can create a centralized database to help those with intellectual and developmental disabilities be a part of clinical trials or educational studies, which ultimately guide best practices. One example of this was in 2018, when the US National Institutes of Health (NIH) procured millions of dollars for the INCLUDE Project to better study Down Syndrome throughout the lifespan (Fidler et. al, 2022).
Belonging and community is another key element to the human rights model (Parmenter, 2024; Claessen et al., 2024). Social scientists have long understood that belonging is a crucial element to psychosocial wellbeing, and research demonstrates that people with IDDs also see belonging as necessary for community acceptance and their meaningful participation in society (Jansen-van Vuuren & Aldersey, 2020). Because the human rights model of disability values the inherent worth of all human beings, it argues that true inclusion goes beyond accessibility. This requires us all to be actively involved as individuals in addition to state and non-state entities.
On the most recent episode of the Mindbridge Podcast, one of the guests was Caitlin Williams, a twenty-one year old woman with Down Syndrome. She expressed excitement about a recent poetry collaboration she did with a graduate student at NYU. There, Caitlin shared about ten pieces of her writing - reinforcing the importance of highlighting work by disabled writers.
“Inclusion means having access to the opportunities that most adults take for granted.”
- Kate Long, Episode 10 of the Mindbridge Podcast
Ongoing Projects & Initiatives
There are countless initiatives working to bring a human rights perspective to disability rights. For example, the ARC’s primary mission is to promote and protect the human rights of all those with IDDs through inclusion initiatives and community participation. They were founded in the 1950s by parents of children with IDDs.
Additionally, the Disability Visibility Project has done excellent work as an online community dedicated to amplifying media created by the disabled community, like Caitlin’s poetry collaboration! Alice Wong, the founder of the project, is a disabled activist and published Disability Visibility: First-Person Stories from the Twenty-First Century in 2020. The book is an anthology of nearly 40 contemporary essays by disabled writers, in order to explore and celebrate their experiences.
Inclusion is More Than A Seat at the Table
This year, we are only just approaching 36 years since the adoption of the Americans with Disabilities Act (ADA), and 20 years since the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD).
This more recent element of human rights history is a firm reminder that when we advocate for disability rights, we fight for the betterment of all people. We fight for a world where accessibility goes beyond accommodations, but spaces that are built inclusively in the first place to center the voices of the disabled community. In order to create a culture of belonging and community, we must place human rights and the inherent worth of all people as the foundation.
References & Further Reading:
Browne, J., & Dorris, E. R. (2022). What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research? Frontiers in rehabilitation sciences, 3.
Claessen, D., Lamkaddem, M., Oomen, B., & Eijkman, Q. (2024). Bringing Human Rights Home: Access to Justice and the Role of Local Actors Implementing the United Nations CRPD. Journal of Human Rights Practice, 16(2). 554–571.
Degener, T. (2016). Disability in a Human Rights Context. Laws, 5(3), 35.
Fidler, D. J., Riggs, N., Esbensen, A. J., Jackson-Cook, C., Rosser, T., & Cohen, A. (2022). Outreach and Engagement Efforts in Research on Down Syndrome: An NIH INCLUDE Working Group Consensus Statement. International review of research in developmental disabilities, 63, 247–267.
Global Down Syndrome Foundation. Facts and FAQ About Down Syndrome.
Gutterman, A. S. (2025). Human Rights of Persons with Disabilities: Achieving Inclusivity for the World’s Largest Minority Group. Social Science Research Network.
Jansen-van Vuuren, J., & Aldersey, H. M. (2020). Stigma, Acceptance and Belonging for People with IDD Across Cultures. Current developmental disorders reports, 7(3), 163–172.
Long, C. (2025). Parents of Students with Disabilities: Don’t Gut Federal Funding. National Education Association.
NICHD. (2021). About Intellectual and Developmental Disabilities. Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Olkin, R. (2022). Conceptualizing disability: Three models of disability. American Psychological Association.
Parmenter, T.R. (2024). Rights Are Necessary but Insufficient for the Achievement of the Full Inclusion of People with Intellectual and Developmental Disabilities. Advances in Neurodevelopmental Disorders, 8. 97–107.
U.S. Department of Justice. Introduction to the Americans with Disabilities Act.
United Nations. (2006). Convention on the rights of persons with disabilities. G.A. Res. 61/106, 76th plenary meeting, A/RES/61/106.
Wong, A. (2020). Disability Visibility: First-Person Stories from the Twenty-First Century.
Zarkhosh, H. (2024). Nothing about Us without Us: Promoting Disability History and Awareness in Classrooms. Facing History.
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