Making Persons with Intellectual Disabilities’ Voices Heard before United Nations Treaty Bodies

In many places and in many ways, persons with intellectual disabilities have been blocked from making important decisions about laws, policies, and programs that affect their lives. This kind of exclusion is a big part of why the slogan of both the international disability rights movement and the self-advocacy movement is “nothing about us without us.” If persons with intellectual or any other kind of disabilities are included in decision-making processes, they have a chance to make their voices heard.

The same is true of human rights reporting. United Nations human rights treaty bodies make important decisions about what different countries are doing well and how they need to improve. These UN committees of experts review reports sent to them by both governments and civil society groups about conditions in their countries so that they can better understand how laws, policies, and programs are either contributing to or missing opportunities to safeguard individuals’ fundamental human rights.

The United Nations Committee on the Rights of Persons with Disabilities is an especially important treaty body for advocates with disabilities to educate about conditions in their countries. These experts, called the “CRPD Committee” for short, regularly make recommendations about how governments can better meet their obligations to promote, protect, and fulfill the human rights of persons with disabilities. The CRPD Committee members are nominated and elected by government representatives based on their expertise and lived experience on issues affecting disability human rights.

Until recently, the CRPD Committee included a person with intellectual disability named Sir Robert Martin. He did a lot to make governments, as well as other Committee members, aware of what more they could do specifically for persons with intellectual disabilities like him. In the true spirit of self-advocacy, he used his personal experiences to inform his advocacy to benefit persons with intellectual disabilities around the world. For example, he was a driving force behind efforts to make information created by the CRPD Committee available in plain language and Easy Read formats.

He is probably one reason why many advocates with intellectual disabilities around the world have gotten involved in efforts to prepare human rights reports for the CRPD Committee. Also called “shadow,” “parallel,” or “alternative” reports, these documents can help CRPD Committee members understand human rights issues that are most important to the reports’ authors, be they national or local organizations, coalitions of different organizations, or individuals. Because Sir Robert was an outspoken champion for the rights of persons with intellectual disabilities, they could reasonably hope that their champion would help to amplify their voices, if they found a way to overcome those challenges that advocates with intellectual disabilities face when they get involved in human rights reporting.

Given our own experiences in Ireland and Uganda advocating for the rights of persons with intellectual disabilities, we wanted to learn more about how advocates with intellectual disabilities were getting involved in human rights reporting before the CRPD Committee. We interviewed individuals who have gotten involved in these efforts themselves and also reviewed submissions to the CRPD Committee from different countries. We saw that advocates with intellectual disabilities were indeed getting involved in reporting to the CRPD Committee, whether that was by being part of broad coalitions of organizations with different perspectives and priorities, or by working with other self-advocates to focus specifically on persons with intellectual disabilities, or by submitting their viewpoints as individuals.

We also had thought that many of the challenges we and others regularly face when doing other kinds of advocacy would also turn up when advocates with intellectual disabilities try to make their voices heard in these reports. In coalition reporting, individuals with intellectual disabilities sometimes were well-supported to share their perspectives but also other times found it difficult to make their voices heard. In self-advocacy groups’ reports, individuals were able to focus on issues affecting persons with intellectual disabilities specifically, but they also seemed to take a long time and require a lot of preparation. With individual reports, authors can do what self-advocates do best—share their personal stories to inform decision-makers—but they may not be representative of issues affecting all persons with intellectual disabilities in their countries.

Each of these three approaches seems to us to offer different opportunities and drawbacks that advocates with intellectual disabilities should consider carefully when deciding how to get involved in human rights reporting to the CRPD Committee or any other UN treaty body. Although some organizations recommend advocates with disabilities to prefer the first approach—that is, forming coalitions to draft human rights reports—we see some important advantages to other approaches that might help advocates with intellectual disabilities in certain contexts to get their message across more clearly. Just as “one size fits all” strategies don’t always work well when it comes to persons with intellectual disabilities, it may be that more advocates with intellectual disabilities explore alternative approaches that may be more inclusive and accessible.

Regardless of how advocates with intellectual disabilities get involved in human rights reporting to UN treaty bodies, we think that right now the most important thing is that they find some way to make their voices heard. Individuals and groups working in different contexts and different times will make different decisions about what’s the best way to make that happen. And hopefully, groups like HPOD, Inclusion International, and others can play a role in sharing what advocates with intellectual disabilities learn from their efforts.

To that end, we think that groups interested in promoting advocates with intellectual disabilities’ participation in human rights reporting should do two things in particular.

First, build capacity and raise awareness. Advocates with intellectual disabilities need training programs and other opportunities to hone their skills for report writing. For example, we had the chance to review a draft of a toolkit for making human rights reporting more inclusive of and accessible to advocates with intellectual disabilities that Inclusion International has developed. We think that this will be a very useful resource that will both call greater attention to the need to support self-advocates to participate meaningfully in CRPD shadow reporting, and also provide interested groups and individuals practical advice for how they can go about making that happen.

Second, foster partnerships. Because so much of human rights reporting is done by organizations and individuals who focus on advocating on the national or local level, international organizations can help self-advocacy groups to establish trusting partnerships with other in-country organizations that can get them the support they may need to get them involved in human rights reporting. Whatever the best approach to human rights reporting for a certain individual or group may be, having an international partner who can help them find support closer to home can go a long way to elevating those advocates’ profile and strengthening their collective voice.

Last, we think governments also have a role in making human rights reporting more accessible to and inclusive of persons with intellectual disabilities. For example, many governments do not always make information that is important for persons with intellectual disabilities available in formats that are accessible to them, and so this is a natural way for States parties to do a better job of following through on their CRPD obligations. Specifically, governments should make their periodic reports to the CRPD Committee easy to understand by publishing them in plain language or Easy Read formats, as the CRPD requires.  

The role of self-advocates in human rights reporting is not just about producing documents; it's about crafting narratives that can transform attitudes and influence policy for the betterment of all persons with disabilities. As we strive for a more inclusive world, the empowerment of self-advocates to up-level their engagement in human rights reporting will ultimately help improve not only conditions in specific countries but also international human rights governance more broadly.

Fionn Crombie Angus & Caroline Naluwemba worked with HPOD as 2024 summer research fellows for the Samuel Center on Social Connectedness.