Global Reach Summit Spotlights Complex Disability Needs

Channel Africa interviewed Sue Swenson (pictured at right), president of Inclusion International, and posted the podcast on YouTube .

Inclusion International ’s first World Congress since 2018 – and its first in the Middle East and North Africa – drew more than 600 participants from 74 countries to Sharjah, United Arab Emirates, in September.

Sue Swenson (pictured at right during a Channel Africa podcast on YouTube ) is the organization’s president. She is a longtime collaborator with the Institute on Community Integration. Swenson noted that a session created for people with multiple, complex disabilities and their families was particularly noteworthy.

People with complex disabilities with little or no speech often cannot communicate independently, making self-advocacy challenging. The session panel, featuring parents from the United States, Argentina, Australia, Germany, and Finland, shared a wide range of experiences in a powerful session, Swenson said.

“Out of that panel, we are forming a new working group on people with complex disabilities and little or no speech,” she said. “We’ve invited all of our members to join, and several already have,” she said.

One of Swenson’s three sons, Charlie (now deceased), had multiple disabilities, which led Swenson to a long career in advocacy that included a stint as acting assistant secretary for the Office of Special Education and Rehabilitative Services (OSERS). She worked briefly at the Institute early in her career and earned an MBA at the University of Minnesota’s Carlson School of Management.

Connecting globally with family members of people with complex disabilities, particularly those with little or no speech, will help the organization tap into a wider circle of inclusion, she said.

“We want to put more emphasis on everyone with intellectual disability,” not just those who identify as self-advocates, she said.

Stephanie Gotlib, another parent and longtime advocate, envisioned and hosted the World Congress panel.

“People with complex disabilities and little or no speech are being left behind and are not understood in the wider disability advocacy and disability rights groups,” Gotlib said. “There is quite a range of experiences in this community, from people who really have not had an inclusive life, to those who have fought really hard for our children to have inclusive lives. And even though many of those are riddled with compromise, they have developed agency,” Gotlib said.

Swenson and Gotlib met in 2018 at the last World Congress, and share a passion to address the dramatic obstacles to inclusive lives that these families continue to face.

“Many of these are people who probably couldn’t attend a World Congress for the basic reason that it is almost impossible to get a visa for someone with multiple complex disabilities to travel to another country, and the support required would be outrageously expensive,” said Swenson, who has already been approached by a potential financial supporter for the working group.

“It would be great to have somebody step up and take this on,” she said. “These are folks who are absent on the world stage. They are absent at the United Nations and in disability alliances.”

Swenson recalled taking Charlie to a meeting of policymakers in Washington, D.C.

“I brought him into the room to try to convince the members of Congress that, look, when you're talking about housing, you're not talking about a wide door and a grab bar in the bathroom. You're talking about much more significant, much more complex needs. It helped clarify assumptions about who people with disabilities are in the United States.”

Swenson noted that the group is not looking to divide itself from the rest of the disability community in a bid for resources.

“Most of the existing solutions to more complex support needs are segregationist, and our approach is entirely inclusionist,” she said. “What we’re trying to figure out is how the people that we love can be included in what everybody else is doing, not how we can separate them so they can be safe and treated and medicalized.’’