Understanding disability and serving disabled people is everyone’s job – not just your institution’s children’s librarian.
Introduction
Disability Facts & Stats
- 61 million adults in the United States, and 2.26 million in North Carolina, live with a disability (CDC; DHDS).
- Adults with disabilities are more likely to experience significant health differences, including having obesity, heart disease, diabetes, and smoking (CDC).
- Across the country, 33% of people with a disability aged 18-44 do not have a usual healthcare provider; the same percent have at least one unmet healthcare need in the past year due to cost (CDC).
- Household income influences outcomes for children with disabilities: low income challenges often increase the negative effects of health limitations (including missed days of school) while higher incomes often serve as a protective factor against more severe consequences (HRSA).
- According to parents, nearly 66% of young adults with special healthcare needs have trouble with one or more of the following: feeling anxious or depressed, acting out, fighting, bullying or arguing, and making and keeping friends (US Dept. of Ed).
Intersectional Identity
Disabled people are not a monolith, and they and their families have a variety of needs. Disability identity is an aspect of identity which incorporates a person’s sense-of-self as a person with a disability along with their connection(s) to the disability community (Mueller, Minotti & Forber-Pratt). However, disability identity is only one facet of an individual’s identity.
Coined by Kimberlé Crenshaw, the theory of intersectionality prompts us to approach identity as overlapping and independent social categorizations (located within systems of discrimination), including race, class, and gender along with disability identity.
Understanding how these social categorizations can impact access to information and source preferences can help libraries and staff to plan services and develop collections that serve this population effectively. Disabled people should not be an afterthought while planning library and information services. Libraries, as local community institutions that purport to be anchors or third places (Elmborg, 2011), can impact the way individuals and groups experience their communities and their ability to seek access to various kinds of information.
Disability & Identity Resources
- Thinking about disability identity (APA)
- Self-identifying as disabled and developing pride in disability aid overall well-being (ScienceDaily)
- What is disability identity development, and why is that important? (Tennessee Works)
- Can disability be an identity without defining us? (The Mighty)
- My disability, my identity (World Economic Forum)
- Critical Disability Theory (Stanford Encyclopedia of Philosophy)
I’m not your inspiration, thank you very much
(Stella Young, TedTalk)
I got 99 problems… palsy is just one
(Maysoon Zayid, TedTalk)
Disability, Identity & Information
Universal is Not Enough—Intersectional Burdens and Information Access
Relationships exist between information-seeking behavior, disability, racial identity, and other demographic characteristics and casts doubt on the effectiveness of one-size-fits-all (or “universal”) programming, services, advertising, and collection development for people with disabilities and their families. In addition to the identified variations in information needs by age and life stage, as cited in Gibson, Kaplan, and Vardell (2017), information needs and the spaces in which people seek information may be uniquely influenced by intersecting variables (e.g., race, income level, and education level). These intersections of identity were situated within a larger geographical context that determined, broadly, the level of perceived access and barriers to local information and resources (including libraries). Libraries seeking to meet these individuals’ and families’ needs cannot do so by providing “ability blind,” “colorblind,” or even “need blind” services that do not acknowledge or understand the differing impacts of identity on family experiences and needs (both in and outside the library). Explicitly evaluating the impacts of library policies—specifically collection-development policies, behavioral policies, borrowing policies, and program participation policies—on different segments of the community can prevent libraries from excluding community members who fall outside of norms established by “universal” or “identity blind” approaches to librarianship. Those community members whose needs are not served (especially those who are socially or economically vulnerable, such as undocumented community members, or people who work full-time and have incomes at or below poverty level) often avoid the time and/or risk involved in making official complaints; instead, they leave and do not return to the library. Without intentional, structured, and consistent mechanisms for assessing these needs, libraries exclude whole segments of local communities from libraries and are none the wiser.
Adapted from Beyond Sensory Story Time: An Intersectional Analysis of Information Seeking Among Parents of Autistic Individuals (Gibson & Hanson-Baldauf, 2019)
Prioritizing Disabled People’s Narratives and Voices with Imani Barbarin
About Imani Barbarin
Director of Communications and Outreach, Disability Rights, PA – @Imani_Barbarin
A graduate of Eastern University with a degree in Creative Writing and a minor in French from the Sorbonne, Imani Barbarin writes from the perspective of a black woman with Cerebral Palsy. She specializes in blogging, science fiction and memoir.
Literacy and Disability with Karen Diaz
About Karen Diaz
Karen Diaz is a mother of a 10 year old with ADHD and a 6 year old with ASD. She came to the United States from Mexico 11 years ago. Karen is also an advocate for parents of children with disabilities. Through her own experience of looking for appropriate services and resources to fit her children’s needs, Karen has also been able to offer support and advice to families in similar situations and need.
Talking About Disabilities
Who is disabled? It’s complicated.
- Most people who could be classified as having a disability don’t think of themselves as disabled.
- Many people with disabilities do not have an official diagnosis.
- Many people’s disabilities (especially learning/reading disabilities) are tied to academic assessments (and they aren’t in school anymore).
- Many disabilities are invisible.
Nearly everyone experiences disability at some point in life.
“Types” of Disabilities
Functional Disability Types
- Mobility: Serious difficulty walking or climbing stairs.
- Cognition: Serious difficulty concentrating, remembering, or making decisions.
- Independent living: Difficulty doing errands alone, such as visiting a doctor’s office or shopping.
- Hearing: Deafness or serious difficulty hearing.
- Vision: Blind or serious difficulty seeing, even when wearing glasses.
- Self-care: Difficulty dressing or bathing.
Acquired Disabilities
Congenital Disabilities
- Developmental Disabilities (including neurodevelopmental disabilities)
View additional information in the Beyond Accommodations and Access slides (PDF).
Language & Disability
CEDI uses a combination of person-fist and identity-first language.
Experiences of Disabled People in & with Libraries
Story
Read and listen
as people talk about
their pregnancy and
birth experiences.
click for audio.
feel about appointments?
Information Poverty & Information Marginalization
What the field of information has called “information poverty” is driven by social constructions of power and privilege that influence physical, emotional, intellectual, or financial ability to seek, find, and use relevant and high-quality information. The concept of information poverty is limited, in that it only describes one half of a relationship between marginalized individuals or groups and more powerful institutions or social groups. We use the term information marginalization to describe the institutional and or community-level mechanisms by which information poverty is created. Providing high-quality information services to traditionally marginalized communities requires information professionals (whether they are building social or technical information systems) understand information poverty and information marginalization as dyadic perspectives on the same mismatch of information values and imbalance of power that often exists between marginalized people and the institutions that purport to serve them.
Moving forward, it is important that we examine how those power imbalances are operationalized in different contexts and at different scales, the mechanisms by which marginalization occurs, and the range of typical responses exhibited by people experiencing information marginalization. Only then can we make the changes needed to create equitable information systems that serve diverse communities well.
Adapted from Re-Situating Information Poverty: Information Marginalization and Parents of Individuals With Disabilities (Gibson & Martin, 2019)
Working with Communities with D. Jones
D. Jones
Self-Advocate/Immediate Past Chairperson (Eastern Region) – Disability Rights NC Board of Directors
D is an individual with autism who shares her tools for living an independent life with other individuals with autism through guest speaking events at ECU Department of Occupational Therapy, TEACCH, and other programs across North Carolina. She provides personal insight to help professionals understand how to better serve people with disabilities. She has been a Physical Therapist Assistant for more than twenty years and is a provider for in-patient and outpatient care services. She also has served as an adjunct instructor at Craven Community College in its Physical Therapist Assistant Program. D received her bachelor’s degree in psychology from Rutgers University, a second bachelor’s degree in liberal arts science from Neumann College, and her associate’s degree in physical therapy assistance at Union County College.
Disabled People Use the Internet! Building and Maintaining Inclusive Library Spaces Online
Your Disability Community
Know Your Resources
National organizations (some have local chapters)
- National Disability Rights Network – Disability Rights North Carolina
- National Down Syndrome Society
- Autism Society of America
- The Arc – The Arc of North Carolina: For and with individuals with intellectual and developmental disabilities (I/DD)
- Goodwill*
- View more via ASU’s National Center on Disability and Journalism’s Disability Organizations List.
National and regional library organizations
Vocational rehabilitation
- North Carolina Vocational Rehabilitation Services
- Vocational Rehabilitation Local Offices (Contact Information)
- Job Seeker’s Toolkit (PDF)
Social Media
- #DisabilityTwitter (Twitter)
- #SpoonieChat (Chronic Illness, Twitter)
- #ThingsDisabledPeopleKnow (Representation, Twitter)
- #CripTheVote (Elections and politics, Twitter)
- #DisabilityVisibility (Twitter)
- #DeafTwitter (Twitter)
- #Neurodivergent (Twitter)
- ECAC – North Carolina’s Parent Center (Facebook)
- Disability Scoop (Facebook)
- Disability Rights Group (Facebook)
* This organization or company is controversial. Please consider researching their work and related news.
Forms & Checklists
The Libraries & Disabilities Startup Checklist covers the following:
- Partnerships: Do you partner with local organizations and/or groups serve disabled people? (Some may not have national counterparts.)
- Do you have any disabled people on your library boards or steering committees?
- Do you regularly seek diverse input from disabled people (including a diverse range of races, ethnicities, types of disability, and income level?)
- How does each person on your staff impact the experience of disabled community members?
- Names and contact information for:
- Local disability rights representative
- EC/Special education coordinator or teachers for your local school
- Arc representative
- Disabled community members interested in volunteering
Open Educational Resources
About these Open Resources
Each student in the Fall 2019 INLS 690-230: Disability Informatics & Information course was responsible for one “chapter” or “module” (below). The modules included two main sections: first a spotlight on a specific disability, and second, a resource on providing some sort of information resource related to that disability, or intended for people with that disability.
Planning, Programming & Services
Disability & The Law
Architectural Barriers Act
The law requires that buildings or facilities that were designed, built, or altered with federal dollars or leased by federal agencies after August 12, 1968 be accessible.
Americans with Disabilities Act (ADA)
- Federal civil rights law for people with disabilities. Protects in services, programs, and activities provided by State and local government entities.
- Title II extends federal prohibitions on discrimination to all activities of State and local governments regardless of whether these entities receive Federal financial assistance.
- Deals with access, employment, and web/technical accessibility.
Education For All Handicapped Children Act of 1975/IDEA
The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.
Rehabilitation Act of 1973
Prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment and in the employment practices of federal contractors.
Voting Accessibility for the Elderly and Handicapped Act of 1984 (VAEHA)
Requires accessible polling places in federal elections for elderly individuals and people with disabilities. Where no accessible location is available to serve as a polling place, voters must be provided an alternate means of voting on Election Day.
Voting Rights Act
Prohibits conditioning the right to vote on a citizen being able to read or write, attaining a particular level of education, or passing an interpretation “test.”
Programming Ideas & Inspiration
Online/Virtual
- Story times
- AMA: Ask Me Anything Guest Speaker – How to Plan a Successful Ask Me Experience
- Live Online Classes / Clubs
- Virtual author talks/readings
- Fitness (yoga, pedometer challenge)
- Informational talks (Census, Stimulus Check)
- Draw-Alongs (Mo Willems Lunch Doodles)
- Podcast series
- Quarantine book clubs
- Movie watch parties
- Virtual Programming & Outreach
In-Person
- Inclusion Game Night
- Sensory-friendly after hours & storytime
- Scholarly Talks on Disability Studies, Advocacy, Disability Month Programming
- Sensory Garden for the Blind and Physically Disabled
- Make a Badge for Disability Awareness (Makerspace Activity)
- Touch History – A Verbal Description Tour
- Serving Adults With Disabilities at Your Library
- Library Service to Special Population Children and their Caregivers: A Toolkit for Librarians (PDF)
- Libraries for All: Expanding Services to People with Disabilities
- Reaching Out: Library Services to the Developmentally Disabled