Social Inclusion: Who Counts? What Counts?

1. Social Inclusion: Who Counts? What Counts? Stacy Clifford Simplican Senior Lecturer Women’s and Gender Studies Vanderbilt University Nashville, Tennessee, USA stacy.c.simplican@vanderbilt.edu

2. Social Inclusion: Core Theme of DOCTRID & Disability Rights • “The Second Decade of the Convention on the Rights of Persons with Disabilities: Inclusion and full participation of persons with disabilities and their representative organizations in the implementation of the Convention”

3. But what is Social Inclusion? • Defining social inclusion of people with intellectual and developmental disabilities • Co-authors Geraldine Leader, John Kosciulek, and Michael Leahy

5. Defining Social Inclusion • Specifies two domains of social inclusion • Adds precision to conceptualization and measurement • Guides future research agenda

6. Who Counts? What Counts? Why do we value social inclusion? Does belonging better capture our values? Co-author Geraldine Leader

7. Social Inclusion: What Counts? • Narrow Approaches • Prioritize settings in the community with nondisabled members • Avoid counting family members, staff, or other people with IDD • Mainstream settings only • Broad Approaches • Recognizes any inclusive activity that provides people with IDD with a sense of belonging • Entails being accepted as an individual and experiencing a valued social role

8. Social Inclusion: Who Counts? • People with mild to moderate IDD more likely to be subject of social inclusion research • Unanswered questions about how to measure and understand the social inclusion of people with more complex and challenging IDD

9. Social Inclusion: How to Count? • Numeric indicators • Number of friends and family • Number of neighbors known by name • Number of weekly visitors • These indicators fail to tell us about the quality of inclusion

10. How does technology change what, who, and how we count social inclusion? • What counts? • Social media: benefit or risk to social inclusion? • Who counts? • Is a ‘friend’ on Facebook the same as a neighbor? • How to count? • Can technology improve how we count inclusion?

11. What counts for service providers & staff? Co-authors, Carolyn Shivers, June Chen, and Geraldine Leader

12. Promises of technology • Communication • “[We need] technology to improve wider systems of communications and consultations with service users, whether for service users who have difficulties with communications, or Twitter or Facebook.” • Everyday Skills • “If they’re living in the community housing, and they need to come in and out of the door more easily. Maybe because they can’t manage to find their keys.” • Enhance independence • “I would think definitely supporting a person to do things for themselves. Their own independence. Their own self-development. Definitely.” • Save staff time • “I was thinking of some sort of software that, with just a click of a button, all the information about a client is there, rather than going to a filing cabinet.”

13. Elements of good design Adaptable Affordable Controlled by user Interactive Easy to use Person-centered Right fit for person and organization Equitable

14. Risks and limits of technology • Victimization • “He looked quite vulnerable there too, with his phone.” • Diversity of service users • “Those clients, most of them have a moderate disability, whereas, in the units, they are more severe.” • “In the children and adult population, their next of kin or relatives are 70 years of age and they’ve never picked up an iPad.” • Ethics • “We need to balance [technology], or bring it around with, the rights of the person and the privacy of the person, and then the whole safety of the person.”

15. Risks and limits of technology • Lack of skills or time • “There would be quite a number of [staff] that wouldn’t be confident in using basic programs, like even Word programs, let alone anything more advanced.” • “[In our service], I want to know everything about everything, but in actual fact, we know nothing about nothing.” • Cost • “Finance will always be used as the first obstacle.” • “I know a lot of times staff members are afraid and again, the big thing is cost. If something is expensive then they’re even more afraid that they might break it.”

16. Future of Inclusion and Technology • People with IDD continue to face high rates of social exclusion • Many are stuck in a digital divide • How can we – practitioners, researchers, policymakers, family members, and self-advocates – use technology to enhance inclusion?

17. Thank you

18. Inclusion and belonging both important • Belonging is important, but it cannot replace social inclusion as a concept • Research should remain open to inclusive spaces that are marked by: • Conflict • Power inequalities • Exclusion-within • Passion • Risk