Blind Spot: Understanding a disabled son’s vulnerability as a state of grace

American Journal of Nursing

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace by Diane Stonecipher, BSN, RN

“His IQ may have been devastated, but his EQ has not. He has lived 25 years on this earth and his experiences are valuable and visceral to him.”

Diane Stonecipher is a nurse living and working in Texas. Contact author: bobcipher@yahoo.com. 

National Council for Aging Care’s Comprehensive Guide on Exercising for Seniors

Comprehensive Guide on Exercising for Seniors

When people think about their later years, they usually imagine a life freed from work or career commitments. They hope, too, that this new freedom will allow them to give their full attention to family, friends, and the activities they feel most passionate about. Making this dream a reality, however, requires health and independence, which in turn require a renewed commitment to staying healthy in general and to maintaining that health through exercise.

The good news, though, is that exercise confers all the same benefits to seniors that it does to those earlier in life, including increased longevity, improved mental clarity, a boost in energy, and greater strength to meet the physical demands of daily living. This is true even if you don’t start exercising until your later years. And while older people tend to become more sedentary as retirement and the challenges of old age restrict their activities, that doesn’t mean that you can’t make a reasonable course of exercise a part of your life or the life of a loved one.

With that in mind, here is everything you need to know about keeping an active lifestyle well into your senior years.

Beginning with Disability: A Primer (Paperback) – Routledge

While there are many introductions to disability and disability studies, most presume an advanced academic knowledge of a range of subjects. Beginning with Disability is the first introductory primer for disability studies aimed at first year students in two- and four-year colleges. This volume of essays across disciplines—including education, sociology, communications, psychology, social sciences, and humanities—features accessible, readable, and relatively short chapters that do not require specialized knowledge.

Source: Beginning with Disability: A Primer (Paperback) – Routledge

Lennard Davis, along with a team of consulting editors, has compiled a number of blogs, vlogs, and other videos to make the materials more relatable and vivid to students. “Subject to Debate” boxes spotlight short pro and con pieces on controversial subjects that can be debated in class or act as prompts for assignments.

XCEL Training

XCEL is designed to give quick tips in an entertaining way to reception/support staff who interact with people with developmental disabilities in healthcare settings. It comprises of a 7 minute animated video, a fact sheet, and highlights other resources that are helpful.

 

Source: Florida Center for Inclusive Communities (FCIC)

XCEL Training

Link Checkers and Basic Accessibility Testers for Websites

Source: LiveWell RERC

Leighanne Davis, B.S.

Introduction

Ensuring website optimization and ease of use are goals of any developer. This holds especially true for organizations disseminating a lot of information to a variety of users from different backgrounds and with different ability levels. Broken links or missing alt text can be frustrating for some people with accessibility challenges. These also detract from the user experience. To mitigate these website errors or accidental exclusions, developers and even laymen can use various online resources to check the efficiency and ease of use of websites.

Download Web+Accessibility+Testing Report for resources and broad information on services offered and how these tools can also be used as a basic accessibility test.

Topics include:

• Programs for website testing

• Locations to download / use each program

• Recommendations

Early Childhood Technical Assistance Center: Improving Systems, Practices and Outcomes for Young Children with Disabilities and their Families

Source: ECTACenter.org : The Early Childhood Technical Assistance Center : Improving Systems, Practices and Outcomes for Young Children with Disabilities and their Families

Most recent additions to this page:

 National Child Traumatic Stress Network (2017) – established to improve access to care, treatment, and services for traumatized children and adolescents exposed to traumatic events. This resource includes descriptions of each type of trauma and evidence-based treatments that work.

 Caring for Children in a Disaster (2017) – This collection of resources from the Centers for Disease Control and Prevention offers simple steps to protect children in emergency situations and help meet their needs during and after a disaster.

Related pages:

State Community Health Worker Models – NASHP

As states transform their health systems many are turning to Community Health Workers (CHWs) to tackle some of the most challenging aspects of health improvement, such as facilitating care coordination, enhancing access to community-based services, and addressing social determinants of health.

Source: State Community Health Worker Models – NASHP

While state definitions vary, CHWs are typically frontline workers who are trusted members of and/or have a unique and intimate understanding of the communities they serve. This map highlights state activity to integrate CHWs into evolving health care systems in key areas such as financing, education and training, certification, and state definitions, roles and scope of practice. The map includes enacted state CHW legislation and provides links to state CHW associations and other leading organizations working on CHW issues in states.

Big Data and the Americans with Disabilities Act

Date Written: 2017

Abstract

While big data offers society many potential benefits, it also comes with serious risks. This Essay focuses on the concern that big data will lead to increased employment discrimination. It develops the novel argument that the Americans with Disabilities Act (ADA) should be amended in response to the big data phenomenon in order to protect individuals who are perceived as likely to develop physical or mental impairments in the future. Employers can obtain medical data about employees not only through the traditional means of medical examinations and inquiries, but also through the non-traditional mechanisms of social media, wellness programs, and data brokers. Information about workers’ habits, behaviors, or attributes that is derived from big data can be used to create profiles of undesirable employees. It can also be used to exclude healthy and qualified individuals whom employers regard as vulnerable to future medical problems. The ADA, which now protects only individuals with current or past disabilities and those who are perceived as having existing impairments, can no longer ignore the discrimination threats posed by predictive health data. The Essay analyzes these risks and propose a detailed statutory response to them.

Download Paper

Hoffman, Sharona, Big Data and the Americans with Disabilities Act (2017). 68 Hastings Law Journal 777 (2017); Case Legal Studies Research Paper No. 2016-33. Available at SSRN: https://ssrn.com/abstract=2841431

Self-identifying as disabled and developing pride in disability aid overall well-being

Date: August 28, 2017

Source: Oregon State University

Summary: Experiencing stigma, the severity of a disability and a person’s age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research shows.

Experiencing stigma, the severity of a disability and a person’s age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research from Oregon State University shows.

“Roughly 15 percent of the world’s population has some kind of disability but just a fraction of those people actually identify themselves as people with disabilities. Disability identity is a critical step in accepting a disability and helps to reduce the stigma surrounding the label,” said Kathleen Bogart, an assistant professor of psychology in the College of Liberal Arts at Oregon State University.

Those who self-identify are also more likely to develop pride in their disability, a shift in thinking that can help build resilience and change public attitudes about the “disabled” label, said Bogart, an expert on ableism, or prejudice about disabilities, whose research focuses on the psychosocial implications of disabilities.

“The challenge with disability as a label is that it’s so mired in stigma that people don’t want that label,” she said. “Can we reduce the stigma and reframe the label as a neutral label that is just useful as a category, like male or female? Or taking it even further, can we shift the label to the point where people have pride in that label?”

Bogart explored issues around disability self-identification and disability pride in two new studies published recently in the journal Rehabilitation Psychology.

The first study examined who is most likely to self-identify as disabled. For the study, about 700 people over age 18 completed an online survey that asked them to identify health conditions they had by checking boxes, or if their condition was not listed, filling in a box. Among the most common impairments were allergies, anxiety, depression, migraines, back injury or pain, attention-deficit/hyperactivity disorder, respiratory disease, hypertension and chronic pain.

Participants also were asked to rate characteristics of their health condition, such as whether it affects daily life, how often it causes physical pain and how often it is noticeable to other people. In addition, they completed a questionnaire about whether they experienced stigma and discrimination because of their condition. They were also asked whether they identify as a person with a disability. Only 12 percent of people with a health condition agreed or strongly agreed that they were a person with a disability.

The researchers found that experiencing stigma, along with severity of the impairment, were the biggest factors influencing whether someone with a disability identified that way.

“The finding regarding stigma was a really powerful one,” Bogart said. “It supports the idea that the concept of disability is primarily a social construct, developed by society’s reaction to that impairment. It’s not just the physical impairment. It’s the way people treat you and the way society builds an environment that does or does not include you.”

The study results suggested that severe impairments lead to greater stigma, which increased the likelihood that people self-identified as disabled.

In the second study, the researchers looked further at the role disability pride plays in overall wellbeing for people with disabilities. Developing pride in the disability — and rejecting the stigma of society on whole — shows promise as a way to protect against stigma and build self-esteem, Bogart said.

“Little is known about the good things that might come with embracing a disability identity,” Bogart said. “We believe developing pride may offer some protective effects for people with disabilities who experience stigma.”

Using the same set of more than 700 survey participants from the previous study, but looking at additional questions, the researchers analyzed factors that influence whether someone has pride in their disability. They found that disability pride tended to be more prevalent among those who experience stigma, those who have strong social support and people of color. They also found that people experiencing greater stigma seemed to lead to more pride, and greater pride was associated with greater self-esteem.

“Disability pride is still a rare thing,” Bogart said. “Most disabilities are invisible and people have to choose to identify with them. Many people hide their disabilities to avoid discrimination. But not identifying also perpetuates the stigma that disability is undesirable. Developing disability pride seems to reduce protect self-esteem against the negative effects of stigma. It’s a really valuable protection for people with disabilities.

“A logical next step for the research would be to develop interventions designed to boost disability pride among people with disabilities and at a policy level, with the goal of improving overall well-being and reducing stigma.”

Social support within the disability community could be bolstered through social groups and mentoring. At a policy level, political activism, media representation featuring disability pride and disability pride events may support pride development.

Co-authors of the self-identification study are Adena Rottenstein of Eastern Michigan University; Emily M. Lund of Boston University; and Lauren Bouchard of Purdue University. Rottenstein and Lund are also co-authors on the pride study. The research was supported by a research grant from the OSU College of Liberal Arts.

Oregon State University. “Self-identifying as disabled and developing pride in disability aid overall well-being.” ScienceDaily. ScienceDaily, 28 August 2017. www.sciencedaily.com

Story Source:

Materials provided by Oregon State UniversityNote: Content may be edited for style and length.


Journal Reference:

  1. Kathleen R. Bogart, Emily M. Lund, Adena Rottenstein. Disability Pride Protects Self-Esteem Through the Rejection-Identification Model.Rehabilitation Psychology, 2017; DOI: 10.1037/rep0000166
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