2019 International Family Leadership Exchange International Initiative for Disability Leadership (IIDL)

Report by Juana Goitia, Member of Asociación Azul, Argentina

International Family Leadership Exchange
Inclusion Alberta, Edmonton, Canada
9th and 10th of September 2019.

We were a group of 18 people from different countries (Canada, United States, New Zealand, Australia, Ireland and Argentina), most of us were relatives of people with disabilities and members of different groups or associations.

The purpose of this Family Exchange was to look at the need for collective action to foster a social movement for inclusion. A movement that would be bigger and broader than any of the organizations that we belong to. We thought it was needed because each family starts over, no matter where they live in the world, when there is a family member with disabilities. They start looking for information, advice, who to contact, trying to achieve inclusion in their community often alone, and they often don’t not know where to go or where to get useful information or support for inclusion. The person with disabilities or the family may turn to the state system or bureaucracy to meet their needs and many times what they get is not what they need to live a full inclusive life in their community.

Families are not motivated by money and don’t have other agendas or interests, other than meeting the expectations of the person with disabilities and always being present. Families are consistent and motivated by love. This explains why the need for a social movement grew.

A social movement for inclusion created and nurtured by the collective action of people with disabilities and their families, would like other social justice movements, mean that the general population would become more aware and knowledgeable about disability, interested in supporting inclusion and allies of families in demanding the local government to provide what is necessary.

Everyone in the meeting had concerns about the status of people with disabilities in their own communities. Although greater or lesser inclusion has been achieved, there are always things to improve or to do. However, this concern always remains among people with disabilities, their families and their friends, and it is not yet a substantial concern of the broader community.

It seems that “disability” always happens to others, and because of this, it is someone else’s problem.

In the comparison of the inclusion movement to other social change movements we raised that we are a group of people with the same dreams or vision of what it means to have an inclusive/good life for everyone. We have to fight for equality and inclusion and tell the world anything less than a fully inclusive life is not enough. We need to put the topic of inclusion for persons with disabilities and their families on every family table to gain the community’s support and take on our concerns as their own. We have a vision of a social movement that is global and makes an impact worldwide. Then more society will stand with us over time, the more help we will have to ensure the wellbeing of people with disabilities.

We have many things to learn from other social movements: how they arose, how they are organized, how they generate social impact, how they use networks, how they gain the interest of society and maintain it over time.

My personal thoughts regarding the match is that it was very enriching, including people with a lot of experience working for people with disabilities. I realized that a social movement is what is needed so that my sister does not have to depend solely on her family for her well-being. Today, if we were not there with her, I don’t think her voice would be heard. I think this is a similar experience all people with disabilities. Disability is part of my family, it is part of society, nobody is exempt. Why are we still fighting for inclusion? Enough of asking permission to belong. We want communities to be expecting people with disabilities and to welcome them.

International Initiative for Disability Leadership (IIDL) and International Initiative for Mental Health Leadership (IIMHL) Network Meeting
Washington, United States
12nd and 13th of September 2019

I went to the joint activities and those of IIDL. There were plenary sessions and also small group work on questions about leadership.

There were plenaries for different countries. United States talked about competitive integrated employment for individuals with disabilities. There were presentations from New Zealand, Scotland and England where I learned about different state policies, current regulations and future plans.

The Family Leadership Exchange was selected to be highlighted at IIDL and Bruce Uditsky, CEO Emeritus, Inclusion Alberta shared our experience with the broader audience.

The interactions between people with disabilities, families, their different organizations, state representatives and service providers provided for interesting discussions and learning opportunities.