INLS 690_230: Disability Informatics & Information

This course introduces students to a range of issues related to disability, information, technology, and information systems as social infrastructure. The course will comprise three main components: an invited lecture series (30%), a service project (30%), the development of an open resource on disability informatics (30%), and a poster or panel presentation in the Symposium on Information for Social Good (10%). Students in the course will read, watch, and discuss a mix of personal accounts, empirical research, commentary, and theory related to information, technology, place, communities, and disability. The course is designed to allow students to gain broad exposure to issues while allowing you to focus on your professional interests/goals.

See the preliminary course syllabus here:

Class Schedule & Readings

Week, Dates, and Topic Class Readings, Videos, Resources Assignments/Graded Work
Week 1

Pre-Class-1/10

Course Overview

  • Course introduction
  • Review syllabus
  • introductions
Readings
  1. Appleyard, R. (2005). Disability informatics. In Consumer health informatics (pp. 129-142). Springer, New York, NY.
  2. Lazar, J., Langdon, P., & Heylighen, A. (2013). Special issue of the journal of usability studies: designing inclusive systems. Journal of Usability Studies, 8(4), 90-92.
  3. Barbarin, I. (2018). Disabled people have an ally problem: They need to stop talking for us.
Resources
  1. Review course syllabus and schedule
Week 2

1/11-1/17

Frameworks for Discussing, Researching, Experiencing, Living Disability
  • Jessica Schomberg (Library Services Department Chair/Media Cataloguer/Assessment Coordinator, Minnesota State University, Mankato). @schomj (Twitter)
  • Class-only session: Imani Barbarin (Director of Communications and Outreach, Disability Rights, PA). @Imani_Barbarin (Twitter)
Read
  1. Berghs, M. J., Atkin, K. M., Graham, H. M., Hatton, C., & Thomas, C. (2016). Implications for public health research of models and theories of disability: a scoping study and evidence synthesis.
  2. Paur, J. (2017). The Right to Maim: Debility, Capacity, Disability. Durham, NC: Duke University Press. Chapter 1: Bodies with new organs: Becoming trans, becoming disabled.
  3. Forlano, L. (2017). Maintaining, Repairing and Caring for the Multiple Subject. continent., 6(1), 30-35.

Additional Optional Readings:

  1. Pain Doctor: What is a Spoonie?
  2. Mayo Clinic:  Seasonal Affective Disorder.
  3. Schomberg, J. (2018). Libraries + Disabilities (Reference list)
Watch
  1. Stella Young. (2014). I’m not your inspiration, Thank you very much. [TED Talk.]
  2. Sitting Pretty Lolo. (2016). THINGS NOT TO SAY TO SOMEONE IN A WHEELCHAIR – TOP 3 [CC] || Sitting Pretty. YouTube.

 

 Service Project: Identify interests and related community partner
Week 3

1/18-1/24

Disability Legislation, Pivotal Cases, and Support Structures

 Stephen Rawson (Education Law Attorney, Tharrington Smith, LLP)
Read
  1. Facts about the Americans with Disabilities Act
  2. Aviv, R. (2018). Georgia’s Separate and Unequal Special-Education System. The New Yorker.
  3. Questions and Answers (Q&A) on U. S. Supreme Court Case Decision: Endrew F. v. Douglas County School District
Watch
  1. Facundo Element. (2014). The D: Detroit Deaf Education.
Resources

Familiarize yourself with the following before this session:
Week 4

1/25-1/31

Understanding Community (assessment)
  • D. Jones (Disability Rights NC Chair 2017 (Eastern Region)/self-advocate)
  • Matthew Schwab (self advocate)
  • Michelle Schwab (Vice President,  Gigi’s Playhouse Down Syndrome Achievement Center, Raleigh, NC)
Read
  1. Giangreco, M. F. (2010). ‘The stairs didn’t go anywhere!’: a self-advocate’s reflections on specialised services and their impact on people with disabilities. In Equality, Participation and Inclusion 1 (pp. 37-49). Routledge.
  2. Doucette, L. (2017). If You’re in a Wheelchair, Segregation Lives.
  3. Vallas, R., & Fremstad, S. (2014). Disability Is a Cause and Consequence of Poverty.

Listen/Read

  1. Alice Wong & Sarah Jama. (2018). Disability justice and community organizing. Disability Visibility Project.
 Service Project: Background information on topic
Week 5

2/1-2/7

Designing Enabling Technology
  • Gary Bishop (Computer Science Department Professor, UNC-Chapel Hill)
  • Class-only session: Brian Moynihan (Head of Health Technology and Informatics, UNC Health Sciences Library)
Read
  1. Faucett, H., Ringland, K., Cullen, A., & Hayes, G. (2017). (in)visibility in disability and assistive technology. ACM Transactions on Accessible Computing (TACCESS), 10(4), 1-17. doi:10.1145/3132040
  2. Hendren, S. (2017, June 16). All Technology is Assistive. Wired. Retrieved October 16, 2018.
  3. Foley, A. and Ferri, B. A. (2012), Technology for people, not disabilities: ensuring access and inclusion. (PDF Download) Journal of Research in Special Educational Needs, 12: 192-200. doi:10.1111/j.1471-3802.2011.01230.x
 Week 6

2/8-2/14

Planning for Assistive Technology
  • Melissa Fortson Green (Technology Accessibility Training Specialist, University of Alabama Assistive Technology)
  • Jim Tignor, MSOT, OTR/L (Sales consultant, Tobii Dynavox)

 

  • Class-only session: Simon Bloor (Assistant Director, Accessibility Resources and Service, UNC) –  Web Accessibility
Read
  1. Mankoff, J., Hayes, G. R., & Kasnitz, D. (2010, October). Disability studies as a source of critical inquiry for the field of assistive technology. In Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility (pp. 3-10). ACM.
 Service Project: Needs assessment interview/contact with partner
Week 7

2/15-2/21

Literacy and Disability
  • Karen Diaz (Past Parent Literacy group coordinator/El Centro Hispano)
  • Karen Erickson (Center for Literacy and Disability Studies, Department of Allied Health Sciences, UNC)
Read

Familiarize yourself with the following services:

  1. Bookshare
  2. Diagram Center
  3. National Center on Accessible Education Materials
  4. Don Johnston Inc, Protocol for Accommodations in Reading (PAR).
 Symposium Panel Proposal
Week 8

2/22-2/28

Understanding Autism and Planning for Autistic Community Members

 Kim Tizzard (Director of Family Support, Autism Society of North Carolina) Class only session – Working through programming scenarios with Kim Tizzard
Week 9

3/1-3/7

Library Accessibility
  • Stephanie Rosen (Accessibility Specialist, University of Michigan Library)
  • Kate Deibel (Inclusion and Accessibility Librarian, Syracuse University)
Read
  1. Kumbier, A., & Starkey, J. (2016). Access is not problem solving: Disability justice and libraries. Library Trends, 64(3), 468-491. doi:10.1353/lib.2016.0004
  2. Stephanie Rosen, “Accessibility for Justice: Accessibility as a Tool for Promoting Justice in Librarianship,” In the Library with the Lead Pipe, November 29, 2017,.
  3. Project ENABLE– professional online development for teachers, librarians. (n.d.). Retrieved October 16, 2018.
Spring Break
Week 10

3/8-3/21

Library Services for people with disabilities: Researcher Panel
  • Paul Jaeger (Professor at College of Information Studies/Director of the MLS Program/college Diversity Officer/Co-Director of the Information Policy and Access Center, University of Maryland)
  • Amelia Anderson (Assistant Professor of STEM and Education Studies, Old Dominion University)
  • Charlie Remy (Electronic Resources and Serials Librarian, Collection Services, University of Tennessee at Chattanooga)
Read
  1. American Library Association. (2018, July 02). Services to People with Disabilities.
  2. Bonnici, L. J., Maatta, S. L., Brodsky, J., & Steele, J. E. (2015). Second national accessibility survey: Librarians, patrons, and disabilities. New Library World, 116(9/10), 503-516. doi:10.1108/NLW-03-2015-0021
  3. Brannen, M. H., Milewski, S., & Mack, T. (2017). Providing staff training and programming to support people with disabilities: An academic library case study. Public Services Quarterly, 13(2), 61-77. doi:10.1080/15228959.2017.1298491
  4. Jaeger, P. T., Gorham, U., & Taylor, N. G. (2015). Libraries, human rights, and social justice : enabling access and promoting inclusion. Chapter 3. Lanham, Maryland: Rowman & Littlefield.
Week 11

3/22-3/28

Universal Design for Learning (UDL) & Web Accessibility

 Tiffany Bailey (Director, Accessibility Resources & Service, UNC Chapel Hill)
Read
Resources
 Symposium Outline/Preliminary Research
Week 12

3/29-4/4

Family Resilience and Medical Information for Families with Disabilities

 Marcia van Riper RN, PhD, FAAN (Professor, School of Nursing and the Carolina Center for Genome Sciences)
Read
  1. Van Riper, M., & Choi, H. (2011) Family-provider interactions surrounding the diagnosis of Down syndrome. Genetics in Medicine, 13 (8), 714-716.
  2. Gibson, A., Kaplan, S., & Vardell, E. (2017). A survey of information source preferences of parents of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(7), 2189-2204. doi:10.1007/s10803-017-3127-z
 Open Resource Project
Final Assignments and Presentations
Week 13

4/5-4/11

Final Assignment Presentations

 Be prepared to discuss community partners, project goals, etc. process, and outcomes. What you did.

 

 Service Project: Final Presentations
Week 14

4/12-4/18

Final Assignment Presentations

 Be prepared to practice your symposium presentation.
No Readings Assigned		 Service Project: Final Presentations
Week 15

4/19-4/25

Symposium Presentations

 NO CLASS / Symposium

(Symposium on April 26)
Resources
 Symposium Presentations