Feature Issue on Self-Advocacy for People with Intellectual, Developmental, and Other Disabilities

When people who have disabilities know their rights, they stand up for themselves. They fight for inclusion in employment, for living independently, and for marriage. They speak out against discrimination.

Through Empower Us, a global self-advocacy program of Inclusion International, more than 200 self-advocates from 37 countries have completed training in self-advocacy leadership since 2017.

What is Inclusion International?

Inclusion International works with people who have an intellectual disability and their families in every region of the world. Our members are organizations who work on the inclusion of people with intellectual disabilities and their families. We have more than 200 members in 115 countries. Many of our members are national-level organizations.

Inclusion International supports our members in three main ways:

1. We advocate at an international level for the rights of people with intellectual disabilities.
2. We bring our members together to share experiences and good practices
3. We provide our members with direct support on some key issues through our program work, such as the Empower Us program.

Inclusion International developed the Empower Us program after a global report called Self-Advocacy for Inclusion was published in 2016. In the report, we spoke to self-advocates, supporters, organizations, and families to find out about self-advocacy around the world.

We found out what self-advocacy meant to people with an intellectual disability. People said that self-advocacy was about three key areas:

• Personal power: Self-advocates understand that they have equal rights like everyone else. Self-advocates make decisions about their own lives and speak up for themselves.
• Working together: Self-advocates work in groups with other people with an intellectual disability. In groups, self-advocates learn from one another and support one another. Together, voices are louder.
• Taking action: The key activity of a self-advocate is to advocate for the rights of people with an intellectual disability. This advocacy might be in their community, in their country, or internationally, but self-advocates work to create change.

We found that self-advocacy was developing all around the world. Many of our member organizations were asking for help to understand how to support self-advocacy and inclusion. Empower Us is our work to support our members with information, resources, and advice to develop self-advocacy leadership in their countries.

To lead the Empower Us work, Inclusion International’s self-advocate council representatives recruited self-advocate leaders from every region. This group became the Empower Us Action Team. The team makes sure the Empower Us work is inclusive, accessible, and useful for all our members around the world.

For me (Mark), working on the Action Team and serving as a city councilor for Blantyre, Malawi, the city where I live, has been an important part of my life and work. I’m also a board member for Inclusion International and I live independently with my wife. I’m also a dad. Through my work, I have managed to meet many people, participate in high-level organizational meetings and share my experiences with others to empower their own self- advocacy. I often say that after learning from Inclusion Africa and Inclusion International for several years now and working on a number of projects, I’m almost there at doing self-advocacy!

What else does Empower Us do?

Since the launch of our work in 2017, Empower Us has focused on delivering self-advocate leadership training. The training is for self-advocates who work with our member organizations.

The goal of the training is to develop self-advocate leaders who can work with our member organizations to advocate for inclusion. The main part of our training focuses on international rights protected by the Convention on the Rights of Persons with Disabilities (CRPD) and how to use the CRPD to advocate for change.

The more I (Mark) lead training sessions, the more I learn from self-advocates. When we are interacting and they are sharing their stories, it has helped me to have more knowledge on what people with intellectual disabilities and self-advocates are facing in different communities. We discuss how we can overcome these challenges.

We have run this training as a three-day event in 11 countries and have also offered day sessions and workshops at conferences. Self-advocates from our Action Team lead all of our training.

In Egypt in 2019, participants came from across the Middle East and North Africa (MENA) region, including Egypt, Bahrain, Sudan, Tunisia, Lebanon, and the United Arab Emirates. Where possible, the self-advocate trainers come from different countries, too, giving all involved a sense that there are people just like them working on the same issues across the world.

What are Empower Us’ successes?

We have found that no matter the country, the issues that self-advocates face are often the same and the goals that people have for themselves and their friends are similar, and this brings people together.

Self-advocates want to be included in their communities, make decisions about their own lives, and be respected and valued. They also want to have paid employment, relationships, and their own families. Discrimination, stigma, and a lack of support prevent people with an intellectual disability from achieving these goals, however.

These shared goals and challenges help self-advocates connect. We talk about experiences and learn about strategies to build relationships and networks. We encourage the groups of self-advocates to stay in touch and, especially at our regional events, suggest that groups get together and create plans for regional advocacy work.

Our Action Team trainers share their successes to inspire and fire up the participants. They share their self-advocacy achievements, such as campaigning for institution closures or helping to change a law in their country, or influencing world leaders at a high-profile United Nations event. Sometimes they share personal accomplishments. Participants understand, “If that person can do it, so can I!" It also helps the supporters and the organizations involved realize that with the right support, self-advocates can meet their goals. Self-advocates leave the training with confidence and determination.

Next steps

Our Action Team is growing to include self-advocate leaders who are graduates of the training. Working with the team, we are creating new training materials, including an accessible app that self-advocate graduates of the Empower Us training will be able to access. It will have the training content as well as a reporting tool so that self-advocates can tell us about their advocacy work after the training.

Empower Us makes a difference in our wider work, such as self-advocacy guidelines that Inclusion International and Down Syndrome International’s membership networks are developing together.

We will continue to support our members and encourage self-advocate leadership throughout our network because this work is so critical. Self-advocacy is important because it is coming directly from people with disabilities. We know what we want, and that message is most clear to people when we are delivering it.

We are always keen to hear about opportunities for us to work and support people with an intellectual disability, their families, and organizations with their self-advocacy or inclusion work. If you are interested, please visit Inclusion International   and the Self-Advocacy Portal or email Empower Us.