A Course in Citizen Leadership for Young Irish Adults with Down Syndrome

by Fionn Crombie Angus, 2024 Social Connectedness Fellow 

Fionn is a 2024 Social Connectedness Fellow, working with Harvard Law School Project on Disability. Fionn is a passionate advocate, and an extraordinary individual with Down syndrome, whose remarkable journey has taken him across the globe. As the inaugural chair of IASSIDD’s Inclusive Research Group, a recipient of the 2022 Distinguished Achievement Award, and a keynote speaker at the upcoming World Congress in Chicago, Fionn’s work inspires many. He co-runs Fionnathan Productions with his father, lectures internationally, and is pursuing a joint doctorate with UVH and Trinity College Dublin. In his blog post, he shares about CAPCA, a project he co-leads that empowers young adults with Down syndrome to become community leaders. 

My name is Fionn. I have Down syndrome, and I live in Ireland. My dad, Jonathan, and I run Fionnathan, a social enterprise engaging in media, the arts, and education. In this blo,g I want to tell you about a project I’m running that teaches other young adults with Down syndrome advocacy through leadership experiences.

Adults with intellectual disabilities are often excluded from many areas of society: going to college, getting a job, choosing a place to live, experiencing romance – all these are less accessible than for others, and social isolation is often a result. By focusing on achieving a great life, we aim to instill in young adults with Down syndrome a sense of belonging and social connectedness.

Last year, the Irish government sought innovative projects to help remove barriers to community engagement for people with Down syndrome. We took it a step further, asking, why not provide leadership experiences? In fact, why not pay people with Down syndrome to run such projects? 

We proposed CAPCA, which stands for Creative Approaches to Practical Community Advocacy. Designed and facilitated with a team of seven people with Down syndrome, we aim to lead change to better everyone’s lives.

We learned that some people work at paid jobs, others want to work, and others don’t. Most seek greater independence, but with different goals in each case. Two are married (to each other), living in their own place, deciding when and how family and paid supporters come to help. One is an official park ranger, paid to preserve the local ecology. We found that people joining CAPCA are living rich and messy lives: as they should be. 

CAPCA happens in three phases: 

1. Citizenship Education 

2. Artistic Exploration 

3. Community Leadership 

I’ll tell you a bit about each.  

Phase One, Citizenship Education, is delivered online. The curriculum was inspired by the United Nations Convention on the Rights of Persons with Disabilities and a new book by Wendy Perez and Simon Duffy called Everyday Citizenship. 

Over a two-month period, participants and supporters learn together about areas such as freedom, purpose, home, money, healthy life, and helpful society. At the end of this phase, each participant identified a community project they’d like to lead.

One example: Aimee has experience acting, both on stage and on screen. But, like most actors, she doesn’t find as much work as she’d like. Recently she saw a play written and performed by an actor with dementia. Because he is no longer able to remember lines, he wears an earpiece, receiving offstage prompts. Aimee thinks this could be a useful tool for actors with Down syndrome, and plans to interview various producers, actors, etc. on how this and other techniques can open acting jobs to more people with Down syndrome. She hopes to express what she learns through a documentary film. 

Another example: Eoin recently started a business, after recognizing that, while ironing is a chore that few people seem to enjoy, everyone likes having neatly pressed garments. He’s getting work orders within his intentional community, but he wants to expand. So, his project will be about finding a storefront space in the heart of town, bringing more foot traffic and greater awareness. And he plans to throw a big grand opening party for the community. 

Phase Two, Artistic Exploration, happens over a two-day retreat, involving movement, music, and handwork, plus the art of social interaction, in a beautiful rural community space in a natural setting. The two outputs frame participants’ ambitious community projects: a written call for supporters to join them, and a diorama (‘a world in a box’) showing the change in community their project will bring.   

Phase Three, Community Leadership, began with a launch event where invited change-makers with essential community building skills heard ‘pitches’ inviting their commitment to support the various projects directly.  

Rosie, a community-based artist, signed up to mentor Aimee and one of the other arts-focused projects. We invited Rosie to consider supporting participants because she is the Creative Director of Workhouse Union, one of whose projects is Nimble Spaces, community-led housing drawing on the principles of cohousing and social inclusion. 

Helen committed to Eoin, helping him define what his business needs are. She is the Team Leader at one of 23 EmployAbility services in Ireland, offering free employment support and services, and said that while the work she’ll do with Eoin is outside her expertise, she’s inspired by his passion and vision. 

Six months in, we have twenty community leaders with Down syndrome running projects of their own design. In four more months, we’ll reunite for these new leaders to share their stories. We believe that graduates can become facilitators of future cycles, and some facilitators might someday lead their own version of CAPCA. 

Glowing participant feedback has helped us to rethink and evolve. Something like this can be done with other communities in other places. Comparing it to other programs, I’m learning how others approach these topics.  

In England, there is Inclusion North’s Cumbria Citizenship Project. Also based on Perez & Duffy’s Everyday Citizenship, they brought together Family Carers, Self Advocates, and a Project Support Coordinator, to speak directly to the National Health Service (NHS). As a more established community institution, they understandably take a more structure-bound approach than we do.  

I interviewed Simon Duffy on his model of Citizenship, which he claims is a more useful model of disability inclusion for society today than the Social Model or the Rights Based Model.  

He says the Social Model, focusing on social oppression, neglects the individual experience of impairment and fails to recognize diversity within the disability community. Additionally, the model’s emphasis on creating a barrier-free environment and defining disability as individuals’ core identity is questionable.  

Duffy argues that the Rights Based Model, focusing on the universality of human rights, ignores the obligation that people feel to contribute to society. Viktor Frankl’s two paths to meaning are to  

1. Lose yourself in service of another person  

2. Be part of something bigger than yourself  

Neither of these are addressed in either model above, but the Citizenship Model sees the obligation to share your gifts as the other side of the citizenship coin. To me this makes a lot of sense. 

In the United States, the Citizen Centered Leadership Development (CCLD) Community of Practice from Cornell University, while originally focusing on training professionals in support provision, encourages co-learning teams including someone with lived experience. Their curriculum utilizes the insights of Social Role Valorization, Theory U, and Asset Based Community Development.  

We greatly appreciate the CCLD course (having completed it ourselves) and feel ours is a kindred approach. But, where it was designed from the service professional point-of-view, our project comes at it the other way around, centering on people with living experience. 

Even if these different approaches to promoting connection have their relative strengths and weaknesses, it is comforting to know that enterprising individuals worldwide are working in concert against forces that contribute to isolation. Chaotic and disconnected as this far-flung constellation of projects may seem to an outsider, it feels to me I am part of a crucial global movement of new approaches to social connection, bringing a sense of purpose to people who have too long been left out. 

People with Down syndrome should have lives as rich, as messy and as fulfilling as anyone else’s, and they should lead their peers in the process of becoming community leaders.  

References 

Citizen Network. (2024, January 1). Out Now: Everyday Citizenship. Citizen Network. Retrieved from https://citizen-network.org/news/out-now-everyday- citizenship 

Workhouse Union. (n.d.). What we do: Nimble Spaces. Workhouse Union. Retrieved from https://workhouseunion.com/project/nimble-spaces/ 

Citizens Information Ireland. (n.d.). Supported employment for people with disabilities. Citizens Information. Retrieved from https://www.citizensinformation.ie/en/employment/employment-and- disability/supported-employment-for-people-with-disabilities/ 

Inclusion North. (n.d.). Citizenship Team in the North East and North Cumbria. Inclusion North. Retrieved from https://inclusionnorth.org/our_work/the- citizenship-team-in-the-north-east-and-north-cumbria/ 

Fionnathan Productions. (n.d.). Invittion to Join CAPCA (Creative Approaches to practical Community Advocacy. Fionnathan. Retrieved from https://www.fionnathan.com/capca-registration 

Fionnathan Productions. (n.d.). Meet the Team. Fionnathan. Retrieved from https://www.fionnathan.com/about-1 

Nuture Development. (n.d.). Asset Based Community Development (ABCD). Nuture Development. Retrieved from https://www.nurturedevelopment.org/asset-based-community-development/