Blogs, sites, and organizations focused on disability
Disabilities style and media guides
Articles and essays about living with a disability
Blogs and websites about traveling with disability
Changing attitudes about disability
Rights of the disabled
Covering disability (for journalists)
Practical angles, devices, resources, tips on living with a disability
Traveling with limited mobility and other disabilities
The legal and financial aspects of living with a disability
Organizations that help artists with disabilities
Awards for writing about disabilities
Memoirs about living with a disability
Fiction featuring people with disabilities
Abuses in treatment of people with disabilities
Disability statistics (U.S.)
Assistive devices, remodeling,
and other ways to enable independent living
Disabilities style and media guides
• Disability Language Style Guide (online, free, National Center on Disability and Journalism, NCDJ) General, physical disability, visually impaired, hearing impaired, mental and cognitive disability/seizure disorders. See also Tip sheets for reporters and ADA.gov (information and technical assistance on the Americans with Disabilities Act, U.S. Department of Justice, Civil Rights Division)
• Guidelines for Writing about People with Disabilities (ADA National Network, Information, Guidance, and Training on the Americans with Disabilities ACT)
• Words of Respect: Speaking of Disability (slideshow for presentation by Doug Ward and Val Alexander Renault, University of Kansas, for the American Copy Editors Society.) Language influences perception and attitudes.
• Guidelines: How to Write and Report About People with Disabilities (based on a national survey of disability organizations)
• Your Words, Our Image (Research and Training Center on Independent Living, Kansas University), a two-column guide to "do say" and "don't say" alternatives--e.g., "burn survivor" rather than "burn victim"; "has a learning disability" rather than "slow learner," "has X" rather than "suffers from X."
• SPJ Diversity Toolbox (resources on disability and accessibility)
• Disability and Mental Health Hot Topics at ACES Convention (part 1) Anya Weber (4-24-14, two-part series of her report on Community Inclusion, disability-related sessions at the annual convention of the American Copy Editors Society. Part 2: Editors Learn About Person-First Language.
Use neutral language, not euphemisms
• A "Science, not stigma" presenter at the 2019 conference of the National Association of Science Writers suggested:
Instead of euphemisms: ("differently abled," "wheelchair-bound" or "confined to a wheelchair," "handicapable" or "handicapped," "suffers from," "special needs," referring to nondisabled people as "regular" or "normal")...
use neutral language: "people with disabilities," "disabled people," "nondisabled people," "wheelchair user" or "uses a wheelchair," "blind people" or "people with low vision," "hard of hearing" or "deaf people," "autistic people," "abled" vs. "able-bodied." Basically:
"Use neutral language. Don't assume a negative relationship between people and their disabilities."
• Ability Online
• Able Data (excellent database for unbiased, comprehensive information on products, solutions and resources to improve productivity and ease life’s tasks)
• Accessible Means of Egress
• ADA Compliant Ramps (AMRamp, 888-715-7598)
• Alterations and Additions (U.S. Access Board)
• The Blind Readers' Page, a guide to sources of information in alternative formats (braille, recorded cassettes, large print, e-texts, web audio) accessible by people with print disabilities--those with visual and physical handicaps as well as dyslexia. It is also a guide to information about blindness, visual handicaps and other physical handicaps, with a special collection of Wisconsin resources.
• Braille Bug (American Federation for the Blind)
• Clear Floor or Ground Space and Turning Space (U.S. Access Board)
• Communication Apps (apps for iPad and Android, Teaching Students with Visual Impairments)
• Devices to make everyday living safer and easier
• Disability Resources (U.S. Dept. of Labor)
• Elevators and Platform Lifts (U.S. Access Board)
• Entrances, Doors, and Gates (U.S. Access Board)
• EZ Reacher (ArcMate)
• FamilyConnect (for parents of children with visual impairments)
• Floor and Ground Surfaces (U.S. Access Board)
• Fully Accessible Guide to Smart Home Tech for the Disabled and Elderly (Meg Cannistra, Reviews.com, 5-23-19) Smart light bulbs, smart hubs, robot vacuums, video doorbells, and smart locks.
• Helpful Products and Technology for Living with Vision Loss (VisionAware, for independent living with vision loss)
• How to Create a Backyard Sanctuary for Kids with Disabilities (Home Advisor) (H/T: Claire Jenkins)
• International Libraries and Organizations for the Blind (The Blind Readers' Page)
• Keitzer Multipurpose Check Writing / Signature Guide
• Opening Doors To Everyone (National Network, Information, Guidance, and Training on the Americans with Disabilities Act) Practical advice about doors.
• Operable Parts (U.S. Access Board on parts such as light switches, electrical and communication receptacles, thermostats, alarm pulls, automatic door controls, and other elements used by facility occupants)
• Organizations and sites helpful for improving life for seniors and the disabled
• Parking Spaces (U.S. Access Board)
• Passenger Loading Zones (U.S. Access Board)
• Protruding Objects (U.S. Access Board)
• Resources for Business Owners with Disabilities (Business.com, 2-7-19) Links to many useful resources.
• Selecting Products for Seniors with Vision Loss (Tara Annis and Lee Huffman, Access World Magazine, May 2011) For example, talking and large-print scales, thermometers, blood pressure monitors; accessible blood glucose monitors, adaptive technologies for medication identification and management, adapting writing instruments and aids, voice recorders for information management, braille, cooking aids, telephone aids, games and word puzzles, adaptive technologies for the TV)
• Sources of Specialty Products for use by people who are blind or visually impaired (VisionAware, AFB)
• Stairways (U.S. Access Board)
• Tax Incentives for Businesses Businesses can take advantage of two Federal tax incentives (a tax credit and a tax deduction) available to help cover costs of making access improvements for customers with disabilities.
• Ultimate Disability Accommodation Guide (Household Quotes UK)
• Using a Computer with a Visual Impairment: A Beginner's Guide to Computer Accessibility (American Foundation for the Blind)
• Vision Loss Resources (612) 871-2222
• Frequently asked questions about disability data (U.S. Dept. of Labor, Labor Force Statistics from the Current Population Survey)
• Americans With Disabilities: 2010 (U.S. Census Bureau)
• Annual Disability Statistics Compendium (The Rehabilitation Research and Training Center on Disability Statistics and Demographics, or StatsRRTC)
• Annual Disability Statistics Compendium (University of New Hampshire Institute on Disability/UCED)
• Annual Statistical Report on the Social Security Disability Insurance Program, 2015 (Bureau of Labor Statistics, U.S. Dept. of Labor)
• Annual Statistical Report on the Social Security Disability Insurance Program, 2015 (Social Security Administration)
• Disability and Health Data System (DHDS) (CDC). See Getting Started Guide and Data Guide.
• Disability Impacts All of Us
• Disability Statistics (U.S., Cornell University)
• Disability Statistics: Information, Charts, Graphs and Tables Document List (a compendium, Disabled World)
• How Disability Data Are Collected (U.S. Census Bureau)
• Persons with a Disability: Labor Force Characteristics (Bureau of Labor Statistics, U.S. Dept. of Labor)
• Selected Data from Social Security's Disability Program (Bureau of Labor Statistics)
• 7 facts about Americans with disabilities (Kristen Bialik, Pew Research Center, 7-27-17)
• AbledBody (where can-do is done different) This consumer website (with guest bloggers) covers disability news and assistive and emerging technologies for people with disabilities. Suzanne Robitaille, founder of AbleBody, also writes a column for the Huffington Post.
• ADA National Network (Americans with Disabilities Act)
• Aging and Disability Networks (Administration for Community Living)
• The DD News Blog . News, information, and commentary for families and friends of people with developmental disabilities.
• DeafRead (best of deaf blogs and vlogs). Includes A deaf mom shares her world
• Disability & Media Matters (Shawn Burns writes about how people with disability are represented in the Australian news media and how they feel about that.
• Disability.Blog, the official blog of Disability.gov, features weekly posts by experts on topics important to people with disabilities, their families, and others.
• Disability issues--information for journalists (The Center for an Accessible Society)
• Disability Rights Section, U.S. Dept. of Justice
• Disability Scoop. A premier source for disability news, with daily coverage of developmental disability news, including intellectual disability, autism, cerebral palsy and Down syndrome).
• Disability Studies (Temple U)
• E-bility (an online resource for people with disability)
• Fred's Head (a blindness blog, rich in resources)
• Girl in a Party Hat (Raising Sophie). Amy Silverman blogs about her daughter Sophie, who has Down syndrome
• Have wheelchair will travel (Richie, 17 and in a wheelchair, travels around the world with his family.)
• Jan's Group Home Support (resources, ideas, and support for caregivers)
• kathiecomments Retired clinical psychologist Katherine Schneider writes about aging, disability and assisted services, including service dogs.
• Martyn Sibley
• McGuire on Media. Tim McGuire blogs about news media and journalism education and occasionally writes about disability from a personal perspective.
• Media dis&dat . News and information about people with disabilities and disability issues.
• Melissa's Solid Ground (for children and adults who have parents with disabilities to share their experiences and just talk to each other in a secure and safe environment)
• Melissa's Dad Reflecting on a 22 year journey as the father of a daughter with special needs.
• Meyrick Jones Racing (The diary of an endurance sports enthusiast with big dreams to represent Canada at the 2010 Paralympic Games in Vancouver.)
• National organizations for the blind and vision-impaired (Blind Readers' Page)
• Office of Disability Employment Policy (ODEP), U.S. Dept. of Labor
• Ouch blog (Brothers, sisters, and disability) (BBC's monthly dose of disability radio -- exploring the disability world in blog posts and a monthly internet radio talk show)
• Resources for Business Owners with Disabilities (Business.com, 2-7-19) Links to many useful resources, including the PASS program. ("With the PASS (Plan to Achieve Self-Support) program, SSI recipients wanting to start a business can continue to accumulate SSI payments while they work and use the money to fund their startup.")
• Rolling Rains Report (precipitating dialogue on travel, disability, and universal design)
• Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead (Health & Human Services)
• Sense and Disability (Chelsey Blair's blog on being a young adult with a disability)
• Service Dogs
• Shaping Our Lives. A national UK network of service users and people with disability.
• Starkloff Disability Institute. Candidates: programs for adults and youth with disabilities who are interested in the next step of their professional life. Companies: learn how we can help your company recruit, prepare for, and welcome professionals with disabilities. Community: Learn how you can help us create a world that welcomes people with disabilities through volunteering, corporate partnership or financial giving.
• Starkloff Career Academy "equips people with disabilities with the skills and confidence needed to succeed in today’s competitive job market." Its new 5-week hybrid online and on-ground course combines the best aspects of the Capstone Course with e-Learning technology.
• Still Outdoors Adventure is still possible!
• 100 Best Blogs for Disabled People and Carers (Stairlifts Reviews). Annotated so you can find the ones that suit your situation. Geared to UK. Includes blogs about traveling with a disability.
"I get up every morning determined to both change the world and have one hell of a good time. Sometimes this makes planning my day difficult." ~E. B. White
• Barrier Free Travels (Candy Harrington's blog with travel info for slow walkers and wheelchair users)
• BootsnAll (one-stop indie travel guide, recommended by World on Wheels)
• Chris Eliot, travel ombudsman
• Emerging Horizons (travel info wheelchair users and slow walkers)
• Flying with Disability
• Global Access News (Disabled Travel Network). See its disability links
• Limitless Travel (UK a company that specializes in accessible holidays and tours)
• 92 and Still Driving? Seniors At The Wheel (Debbie Brodsky).
• Resources for the Blind and Vision Impaired (Laser Eye Surgery Hub)
• Rolling Rains Report (precipitating dialogue on travel, disability, and universal design)
• Simply Emma (UK), Scottish blogger who loves to travel writes about doing so in a wheelchair)
• Tourism Is for Everybody (a UK firm that works with businesses and policymakers to promote accessible tourism in the UK)
• Travels with Pain (helping travelers with hidden disabilities explore the world)
• The World on Wheels (a blog). Tim, disabled from birth, travels with a wheelchair; Darryl, his father and caregiver, travels with him.
• Illinois Families, Kids With Disabilities Suffer Without Childcare (Lee V. Gaines, Illinois Newsroom, Fresh Air, NPR, 8-15 or 9-10-18) "Roughly two years ago, O'Connor said her and Mark's life changed for the better. She discovered a grant-funded program called Kid's Connection that provides afterschool and summer care for children with and without disabilities ages five to 18. The program is administered by a non-profit group in Decatur called Macon Resources, Inc."
• But You Look Fine: A Reading List About Disabilities, Accommodations, and School (Jacqueline Alnes, Longreads, 4-2-19) She recommends the first six articles below, and writes her own as well.
• The Plight of the Disabled Graduate (Mikhail Zinshteyn, The Atlantic, 6-4-15) Many of the systems designed to help students with disabilities disappear after they complete their education.
• On YouTube, people with disabilities create content to show and normalize their experiences (Jessica Chiu, WaPo, 10-6-19) Ruby Ardolf, 14, has her own YouTube channel (Angie and Ruby), featuring familiar aspects of a teen’s daily life and merchandise with messages of kindness and inclusion. But Ruby is not a typical teen vlogger. She is disabled — one of 12 people worldwide with a genetic condition called Stromme syndrome, which results in microcephaly (small brain), and impaired vision and motor functioning. YouTube channels by and about disabled individuals provide visibility into their daily lives and have drawn viewers. Special Books for Special Kids , which often shows significantly disabled children, has over 1 million subscribers, and Squirmy and Grubs, about an inter-abled couple, has about 450,000 subscribers. Both channels get millions of individual views.
• This novel D.C. academy trains people with disabilities to provide paid support for others living with disabilities. (Hannah Natanson, Washington Post, 8-21-19) Antonio Myers, a 25-year-old autistic D.C. native, is a student in the second class to come through a school that trains people with disabilities to care for others with disabilities. For Myers, life with autism has always felt like sitting in a movie theater. Everyone is watching the same film, said Myers, a 25-year-old D.C. resident on the high-functioning end of the autism spectrum. But he’s the only one wearing 3-D glasses. “I am able to see more, behind the scenes, which enables me to understand more of what’s in front of me,” Myers said. “It makes me able to see people as human before anything else” — which makes him “very good at compassionate grieving or just bearing with people.” He will draw on both skills in his new job: serving as a direct support professional, or DSP, for people living with disabilities in the D.C. area.
• Yale Will Not Save You (Esmé Weijun Wang, The Sewanee Review,Winter 2019) "I went to Yale" is shorthand for I have schizoaffective disorder, but I'm not worthless.
• The Worry I No Longer Remember Living Without (Nicole Chung, Hazlitt, 3-9-17) Around the happy moments with my autistic daughter lurks the anxiety, even worse under the new administration, that she will lose her right to be educated at her neighbourhood school.
• At This Summer Camp, Struggling With a Disability Is the Point (Blake Farmer, Nashville Public Radio, NPR, and KHN, 8-13-19) A summer camp for children with disabilities in Nashville does things a little differently. Rather than accommodate the campers’ physical challenges, therapists make life a bit tougher, in hopes of ultimately strengthening the kids’ ability to navigate the world. This kind of rehab is known as constraint-induced movement therapy. Similar camps are run by children’s hospitals around the U.S. during the summer months. The approach is based on research by Edward Taub and his team at the University of Alabama. He hypothesized years ago that the affected limbs suffer from “learned nonuse.”
• Even If You Can't See It: Invisible Disability and Neurodiversity (Sejal A. Shah, Kenyon Review Online, Jan/Feb 2019)
• Why We Dread Disability Myths (Tara Wood, Craig A. Meyer, and Dev Bose, The Chronicle of Higher Education, 5-24-17) "We need to adjust our classroom environments away from ableist structures and shuck our own ableist baggage so that when we encounter disability in our classrooms, we are filled with possibility, not dread."
• How to Make Grad School More Humane (David M. Perry, Pacific Standard, 2-5-19) It's time to end the boot camp approach to graduate school. There's a mental-health crisis among graduate students, and it bears particularly hard on those with disabilities. Fixing it requires specific mental-health supports—and broad cultural change.
• Identity-first vs. person-first language is an important distinction (Tara Haelle, Covering Health, AHCJ, 7-31-19) Is she an "epileptic child" or "a child with epilepsy"? With mental health disorders, it’s usually best to use person-first: a man with schizophrenia (not a schizophrenic man). But in the autism and deafness communities, the descriptor is part of their identity, not something they "have." See also Identity-First Language (Lydia Brown, Autistic Self Advocacy Network) 'In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity.' An interesting discussion of why an autistic person might prefer that terminology to "a person with autism," as if autism is something inherently bad like a disease.
• The Pearson Twins: Identical Twins Who Look Nothing Alike (Jonathan Braue, Atlantic video, 3-27-19) Adam and Neil Pearson are identical twins, but you’d never know it from looking at them. Although they share the same DNA, their appearances are vastly different; each suffers from neurofibromatosis, a rare genetic disorder that has affected them in divergent ways. They tell their story in Jonathan Braue’s deeply affecting short documentary.
• I'm a Person With a Disability and My Body Is Not a Mistake (Kristin Duquette, HuffPost, 12-18-14)
• Eleven presidents who were able to successfully overcome a disability (John Rampton, Inc., 8-25-15)
• A Disabled Life Is a Life Worth Living (Ben Mattlin, NY Times, 10-5-16) " In living with a disability, you've already dealt with much of what other people fear most, and if you come out on the other side you are, by definition, a survivor. The resolve required, and begrudging acceptance of what you can't change, may bring a kind of wisdom."
• Jamie's place (Michael Bérubé, Aeon, 11-1-16) Like any adult, my son wants to work, travel and socialise, and his Down syndrome won't stop him. But can he live independently?
• Toward My Own Definition of Disability (Ashley P. Taylor, Hazlitt, 2-28-19) Growing up, I resisted identifying as disabled. Now, I'm seeking to better understand the label and the community behind it.
• What Does It Mean To Live With A Body That Can't Be Fixed? (Anna Leahy, Buzzfeed, 9-28-18) Three new books by Ada Limón, Sonya Huber, and Sandra Gail Lambert change the narrative around what it means to live with illness — and be well.
• Access Anything: I Can Do That! - Adventuring with Disabilities by Andrea & Craig Kennedy
• Traveling With Disabilities (Kojo Nnandi show, 11-3-15). After a five-hour flight from San Francisco to D.C., D’Arcee Neal, who has cerebral palsy and could not use the airplane bathroom, simply couldn’t wait any longer and crawled off the plane when the airline failed to bring him the wheelchair made to fit the plane’s aisle. Although federal laws require equal accessibility to transportation for people with disabilities, his experience is not uncommon. Kojo talks with D’arcee and other disability rights activists about what happened to him and how similar events can be avoided in the future.
• Ultimate Guide to Traveling with Disabilities (ChampionTraveler) Includes guides for traveling on specific airlines.
• Do you need travel insurance? (Consumer Reports, July 2012) Maybe, if there are gaps in your auto, health, life, or homeowners policies. But buy wisely. "Instead of buying a policy through a travel agent or booking site, go to an online broker such as InsureMyTrip.com, which sells coverage from 21 carriers, including CSA Travel Protection, MedJet Assist, and Travelex." See reviews of travel insurance plans.
• The Essential Guide to Travelling with a Medical Condition (InsuranceWith) a pretty good guide to traveling with a medical problem or disabily, plus they sell travel insurance.
• Ultimate Travel Insurance & Disabilities Guide (Alicia Miley, Compare Travel Insurance) Quite a bit of practical advice here, including packing list.
• Barrier-Free Travel:A Nuts And Bolts Guide For Wheelers And Slow Walkers by Candy B. Harrington (author of 101 Accessible Vacations: Vacation Ideas for Wheelers and Slow Walkers and There Is Room at the Inn: Inns and B&Bs for Wheelers and Slow Walkers)
• Rick Steves' Easy Access Europe: A Guide for Travelers with Limited Mobility
• These Aren’t Tykes on Little Bikes: A Mature Market Adopts the Tricycle (Rachel Bachman, Wall Street Journal, 10-9-14). See also Adult tricycles (article by Emily Stokes, "The Third Way: Tricycles," in T, 11-11-14). And Adult tricycles (a Best Reviews guide).
• The EMPOWER Care Act Would Give People With Disabilities the Freedom They Deserve (Lindsay Miller, Executive Director, New York Association on Independent Living, 9-4-18) The EMPOWER Care Act is bipartisan legislation to re-authorize the Money Follows the Person program, which helps people with disabilities move from institutions into the community. MFP is little known outside of the disability community, but it has been an extremely successful Medicaid program that has helped over 75,000 people with disabilities from 47 states leave institutions and move back into their own homes. It was enacted in 2005 with strong bipartisan support.
• The secret war on the left between unions and people with disabilities ( Sara Luterman, WaPo, 11-14-19) Labor is opposed to closing institutions as people with disabilities are increasingly moving toward community settings. Unions’ interest in keeping their members’ good-paying jobs conflicts with the interests of one of society’s most vulnerable populations — people with developmental disabilities and significant mental-health conditions. Research shows that people with disabilities are better served living in communities, with support services delivered at home. Any setting with people who have limited abilities to communicate and staff who have complete control over their daily lives is dangerous. For example, one study showed that 87 percent of the abuse and neglect cases over a five-year period happened in institutions and group homes, as opposed to in a person’s own home. Home-care workers are some of the lowest-paid workers in the United States. There is a 46 percent national turnover rate for home-care workers. More than a third leave their positions in less than six months. Disability groups such as the Arc are largely on board with the idea of advocating for higher direct-support worker pay.
• The Right to Sexuality (a short video documentary, The Atlantic, 6-14-19) Paul and Hava met at a performing-arts social event for people with intellectual disabilities. They fell in love and with their parents' consent got married, but the group homes in which they lived objected to their cohabiting. In the film, Consuelo Senior, a sex educator at the YAI National Institute for People With Disabilities, says group homes are hesitant to address the issue of sexuality because of the liability associated with matters of consent. Can Paul and Hava legally prove they can consent to their sexual relationship, thereby earning the right to live together?
• What you need to know (ACLU) Seventy percent (70%) of public school students who are physically restrained or secluded have disabilities. Sixty percent (60%) of people in local jails have some form of mental disability. Forty-eight percent (48%) of people with disabilities have a personal income of $15,000 or less.
• The Legal Rights of People with Disabilities: An Overview (FreeAdvice.com) "Employment Discrimination. The right to be free of discrimination based on a disability is clearly given under federal law in the Americans with Disabilities Act (ADA) and Sections 501 and 503 of the Rehabilitation Act of 1973."
• A Guide to Disability Rights Laws
• The Americans with Disabilities Act of 1990 and Revised ADA Regulations Implementing Title II and Title III
• ADA.gov (information and technical assistance on the Americans with Disabilities Act)
• Human rights of persons with disabilities (Office of the High Commissioner, United Nations Human Rights)
• Disability Rights (Human Rights Watch)
• Rights of Persons with Disabilities in America (Disabled World)
• Stephen Hawking’s Disability Wasn’t Something To ‘Overcome’ (Ace Ratcliff, HuffPost, 3-15-18) "Variation within a species is necessary to strengthen it. Patients with sickle-cell anemia are immune to malaria. Deafness led to the development of the phone, the internet and SMS texting. I suspect EDS patients have a lot to teach astronauts about how their bodies change after long periods of time in space. Hawking himself usually said his ALS gave him more time to think. When the media portrays disability as something within which there are neither positives or neutrals, they fail to recognize that disability is just another genetic variation within the vast species of humanity."
"Living within a disabled body afflicted with perpetual pain isn’t easy. My body is sometimes a limiting factor on my life. More often, however, what limits me is a world designed to explicitly and implicitly accommodate only the non-disabled subset of the population....When I can’t access the medications I need because privatized insurance has denied me access, I’m not fighting my disability. I’m fighting a world that says I don’t deserve to manage my illness because it costs Blue Shield too much money. (Hawking fought against privatization of health care to the very end of his life, noting that access to the National Health Service in the U.K. was integral to keeping him alive.)"
• NDEAM 2015: My Disability is One Part of Who I Am (Jennifer Sheehy, U.S. Dept. of Labor blog, 10-5-15)
• Adaptive Action Sports, nonprofit organization cofounded by Amy Purdy, to help people with physical disabilities get involved in action sports, go snowboarding, skateboarding, etc. Purdy is co-author (with Michelle Burford) of On My Own Two Feet: From Losing My Legs to Learning the Dance of Life Growing up, Amy Purdy was an artist and board sport enthusiast. Her goal was to spend a few years traveling the world and snowboarding when suddenly, at the age of 19 her life changed forever. After a day of flu like symptoms Amy was rushed to the hospital in a state of septic shock and diagnosed with Bacterial Meningitis, a deadly blood infection. Amy fought for her life for nearly 3 months, leaving the hospital a completely different person physically, mentally, and spiritually. Amy lost both of her legs below the knee, as well as all kidney function, but it didn't stop her from following her dreams. A world-class snowboarder and 2014 Paralympic bronze medalist, she also danced on Dancing on the Stars.
• Doctors With Disabilities: Why They’re Important (Dhruv Khullar, The Upshot, NY Times, 7-11-17) "Disabled individuals are more likely to feel that their doctors don’t listen to them, treat them with respect or explain decisions properly. Doctors often make false assumptions about the personal lives of patients with disabilities. For example, women who have difficulty walking are much less likely to be asked about contraception or receive cervical cancer screening, in part because doctors assume they’re not sexually active. Disabled patients are also about 20 percent less likely to be counseled to stop smoking during their annual checkups."
• Disability Is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities by Kathie Snow. Check out her website for many other useful resources: Disability Is Natural.
• Tips for Using Patient-Friendly Language (Katharine O'Moore-Klopf, ACES, 1-14-19)
• We Need More Doctors With Disabilities (Nathan Kohrman, Medical Examiner, Slate, 7-5-17) One-fifth of all Americans have a disability, but less than 1 percent of doctors do. That’s slowly starting to change—to the benefit of medicine and patients.
• Renting with Disabilities (Tenant Resource Center for Housing Justice in Wisconsin). Search for similar sites in other states, but this may be helpful generally, too.
• ADA: Disabilities & Your Rights as an Employee (FindLaw)
• Past Due: A Story of Disability, Pregnancy, and Birth by Anne Finger (a frankly detailed story about home birth by a woman with postpolio problems that make giving birth "problematic" -- also opens one's eyes to the stereotypes people have toward disability and to the complexities of reproductive rights).
• Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew , ed. Stanley D Klein and John D. Kemp (40 stories by successful adults who grew up with disabilities
• No Pity : People with Disabilities Forging a New Civil Rights Movement
• Why I Wrote the Americans with Disabilities Act ( Robert L. Burgdorf Jr., U.S. Dept. of Labor blog, 7-29-15) "The ADA was a response to an appalling problem: widespread, systemic, inhumane discrimination against people with disabilities. ...a good reminder of what our nation’s leaders can accomplish when they meet each other in a spirit of civility and compromise." An interesting article.
• National Veterans Wheelchair Games (Dr. Govloop)
• Actors Access for Performers with Disabilities (SAG-AFRA)
• Ask JAN (Job Accommodation Network, or JAN, Office of Disability Employment Policy)
• ADA.gov (information and technical assistance on the Americans with Disabilities Act, U.S. Department of Justice, Civil Rights Division)
• Covering disability (Writers and Editors website)
• Disability Resources (U.S. Department of Labor, Office of Disability Employment Policy) Federal directory of information for employees with disabilities, including explanation of workplace rights.
• Employees’ Practical Guide to Requesting and Negotiating Reasonable Accommodations Under the Americans with Disabilities Act
• How to Qualify for Medicaid and CHIP Health Care Coverage
• Journalist's Toolbox (SPJ's excellent links to resources on disability and accessibility)
• Mediadis&dat (news and information about people with disabilities and disability issues)
• National Center on Disability and Journalism (NCDJ)
• NCDJ Style Guide, how to use appropriate language--for example, when is it appropriate to use the terms "handicapped" or "disabled." General, physical disability, visually impaired, hearing impaired, mental and cognitive disability/seizure disorders, etc.
• Obstacles and Opportunities for Journalists with Disabilities (Michelle Hackman, Nieman Reports, 3-30-16) A blind journalist on overcoming the latent prejudices that keep people with disabilities out of newsrooms
• Organizations and sites helpful for improving life for seniors and the disabled (Comfortdying.com)
• Representing Disability in an Ableist World: Essays on Mass Media by Beth A. Haller (see Haller's links to disability resources)
• Resources for Journalists with Disabilities (NCDJ)
• Tip sheets for reporters (NCDJ)
• We Need More Doctors With Disabilities (Nathan Kohrman, Medical Examiner, Slate, 7-5-17) One-fifth of all Americans have a disability, but less than 1 percent of doctors do. That’s slowly starting to change—to the benefit of medicine and patients.
• What are some types of assistive devices and how are they used? (National Institute of Child Health and Human Development, NICHD) See also Assistive devices, remodeling, and other ways to enable independent living for aging and disabled people (Comfortdying.com) Devices to make everyday living safer and easier.
• What Can You Do? The Campaign for Disability Employment, the movement that’s changing attitudes about the employment of people with disabilities
• Writing About People With Disabilities (Mike Reilley, Journalist's Toolbox, SPJ, 10-23-19) resources on disability and accessibility)
• Abuse and Exploitation of People with Developmental Disabilities (Disability Justice) Abuse and exploitation are constant dangers for people with developmental disabilities. In fact, they are four to ten times more likely to be abused than their peers without disabilities. Compared to the general population, people with developmental disabilities are at greatest risk of abuse and –
Tend to be abused more frequently.
Are abused for longer periods of time.
Are less likely to access the justice system.
Are more likely to be abused by a caregiver or someone they know; many are repeatedly abused by the same person.
Are more likely to remain in abusive situations.
Children with disabilities, in particular, have a higher risk of being abused or neglected.
• Trapped: Abuse and neglect in private care (Audrey Quinn, on Reveal, The Center for Investigative Reporting, 8-4-18) "Deep in the backroads of central Florida, hidden between trees dripping with Spanish moss, sits the campus of an infamous center for the developmentally disabled. Its story shows what can happen when families have nowhere else to find care for their loved ones. After years of complaints, Carlton Palms is finally being shut down. But its parent company, Bellwether Behavioral Health, is still running group homes across the country, where new allegations have arisen. WNYC reporter Audrey Quinn investigates the company and speaks to a family whose son was abused at two of Bellwether’s New Jersey facilities. She discovers that, with national spending on autism services expected to increase 70 percent by 2025, the company is owned by a private equity firm." Private equity firms buy companies like Bellwether because they see autism as a growth industry. Listen or read transcript.
• New Jersey Halts Admissions for Troubled Group Home Company (Audrey Quinn, WNYC, 8-3-18) In August 2012, the Saccoh family thought they’d finally found a good home for the youngest of the family’s eight adult siblings, near their home in Trenton. Abdulaye, then twenty, is autistic and intellectually disabled. Abdulaye, then twenty, is autistic and intellectually disabled. A quick-to-laugh computer whiz and Special Olympics track star, he’d spent two years at the North Jersey Developmental Center after he started having behavioral issues at the age of 18. The family was eager to move him out of an institutional setting when Bellwether Behavioral Health approached them and offered Abdulaye a new placement." Things did not go as they hoped. "The Saccohs found themselves in the same position as many families dissatisfied with the care of their developmentally disabled love ones — ill-equipped to house Abdulaye in their own home, but unable to find him an alternative to Bellwether in the absence of verifiable proof of abuse."...In recent years, private equity funds have begun eyeing developmental disability services as a growth industry, due to growing autism diagnosis rates. National spending on autism is expected to rise 70 percent between 2015 and 2025. Past Bellwether employees allege that once Wellspring purchased Bellwether, the firm began to cut costs by cutting administrators and home staff and hiring less-educated workers. The lawsuit on behalf of the Beltre family alleges that Wellspring is using Medicaid money intended to support client services to “improperly and unjustly enrich the Corporate Defendants.” It also accuses them of using Medicaid money to fight off lawsuits."
• The Pain of Verbal Abuse: Impact on People With Disabilities (Jason Vanover, Relias, 7-26-16) "n May 2016, two employees of an Alabama high school were arrested for the physical and verbal abuse of an 11-year-old student with autism, reports CBS News. While society would like to believe this is an isolated incident, the truth about physical and verbal abuse of those with disabilities is quite the opposite. Those with disabilities are more likely to become victims, and they may not be able to speak up for themselves."
• Bullying and Harassment of Students with Disabilities: (Pacer's National Bullying Prevention Center) Children with disabilities are two to three times more likely to be bullied than their nondisabled peers. Top 10 facts that parents, educators and students should know. Among them: 4. The Federal Laws – There are legal protections and provisions for students with disabilities who are being harassed. 5. The State Laws – All states have bullying prevention laws and some include disability-specific information. 6. Role models - The adult response is important. 7. The resources – Students with disabilities have resources that are specifically designed for their situation. 8. The Power of Bystanders – More than 50 percent of bullying situations stop when a peer intervenes.
• People with Mental Retardation & Sexual Abuse (Leigh Ann Reynolds, The Awareness Center, 8-18-02)
• Failings in learning disability deaths, report finds (BBC News, 5-4-18) The Learning Disability Mortality Review found failings had taken place in one in eight deaths, from abuse to delays in treatment. The report comes in the wake of the death of Connor Sparrowhawk. Mr Sparrowhawk, who had learning disabilities and epilepsy, died when he had a seizure alone in a bath at an NHS care unit in 2013. Speaking to BBC News following Friday's report, Mr Sparrowhawk's mother, Dr Sara Ryan, said the authorities were showing a "systematic disregard" for some people. "Certain people simply don't count - you can't dress it up as anything else," she said....in 13 of the 103 cases that had been reviewed, a patient's health had been "adversely affected" by factors including treatment delays, gaps in service provision, organisational dysfunction or neglect or abuse."
• Advance directives, living wills, Medicare, and other practical matters
• Disability Evaluation Under Social Security: Listing of Adult Impairments (Adult) (Social Security Administration)
• Disability Evaluation Under Social Security: Listing of Childhood Impairments (Social Security Administration)
• The Social Security Disability Claims Process (YouTube video)
• House passes benefits fix for ailing 'blue water' veterans, now awaits Senate's move (Leo Shane III, Military Times, 6-25-18) 'House lawmakers on Monday advanced plans to extend disability benefits for nearly 90,000 “blue water” veterans exposed to toxic chemicals during the Vietnam War but until now denied compensation for that danger....But so-called “blue water” veterans — who served on ships off the coast of Vietnam — still need to prove direct exposure to Agent Orange for their illnesses to be labeled as service-connected. In many cases that’s impossible, since scientific evidence from the ships was never collected.'
• Long-Term Disability Insurance Gets Little Attention But Can Pay Off Big Time (Michelle Andrews, KHN, 10-10-17) As the annual benefits enrollment season gets underway at many companies, disability coverage may be one option worth your attention. Some employers may be asking you to pay a bigger share or even the full cost. That can have a hidden advantage later, if you use the policy. If you become disabled because of accident, injury or illness, long-term disability insurance typically pays 50 to 60 percent of your income, while you’re unable to work. The length of time the policy pays varies; some policies pay until you reach age 65.
• When Wait Times Become A Death Sentence: A Look Inside Backlog For Disability Benefits (Kaiser Health News). Links to the Washington Post's Disabled in America series:
---597 days. And still waiting. (Terrence McCoy, WashPost, 11-20-17) 10,000 people died in the past year while stuck in a backlog of judges’ disability cases. What will happen to Joe Stewart? A Wash Post series:
---Part 1: Disabled? Or just desperate Rural Americans turn to disability as jobs dry up
---Part 2: Generations, disabled One family. Four generations of disability benefits. Will it continue? A family on the fringes prays for the "right diagnosis."
---Part 3: Disabled and disdained How disability benefits divided this rural community between those who work and those who don’t
---Part 4: 'I am a hard worker" Some say people on disability just need to get back to work. It’s not that easy. Lisa Daunhauer wanted to be one of the few to get off disability. But first she had to succeed at Walmart.
---Part 5: After the check is gone Her disability check was gone, and now the only option left was also one of the worst. The underground economy has long been a part of rural America, where some receiving disability benefits are forced to work to survive.
• Benefits.gov. The official benefits website of the U.S. government. Informs citizens of benefits they may be eligible for. Provides information on how to apply for assistance.
• The Complete Guide to Disability Claims, Insurance and Benefits (DisabilityDenials.com, associated with Marc Whitehead's disability benefits law firm). I tend not to list links associated with law firms, but this guide looks pretty useful). The firm also offers free ebooks (which I did not examine) about Disability Insurance Policies, The Social Security Disability Puzzle, and Veterans Disability Claims.
• Disability Planning (ElderLawAnswers)
• How to apply for SSI
• Japan’s elderly turn to life of crime to ease cost of living (Leo Lewis, CNBC, 3-26-16) Japan's shoplifting crime wave represents an attempt by those convicted to end up in prison — an institution that offers free food, accommodation and healthcare.
• Long term care insurance (links to articles and sites that answer your questions) Should you or should you not buy long-term care insurance? How much? Can you afford it? Where to learn about options. Do premiums or benefits affect your tax picture? Separating expenses and emotions.
• Nolo online law center (provides legal assistance in preparing documents for elder care)
• Social Security cash benefit programs for people with disabilities and parents of children with disabilities
• Supplemental needs trusts and planning for disabled children (ElderLawAnswers)
Or (resources described by the National Endowment for the Arts--check that link for more information about the organizations listed below)
• Access to the Arts (Louisville, KY)
• Accessible Arts (VSA, Kansas's state organization on arts and disabilities)
• Alliance for Inclusion in the Arts (formerly Non-Traditional Casting Project)
• American Federation of Musicians (provides grants to musicians with disabilities)
• Axis Dance Company (strives to integrate contemporary dance and disability culture)
• Coalition for Disabled Musicians, Inc.(CDM)
• Culture! Disability! Talent! (works to correct disability stereotypes by providing access and opportunities for performers and media-makers with disabilities)
• The Dancing Wheels Company & School (one of America's first integrated dance companies, comprising professional dancers with and without disabilities)
• Disability and the arts: the best of times, the worst of times (Jo Verrent, The Guardian, 3-23-15) Introducing a new series on disability arts, producer Jo Verrent looks at some of the key issues affecting disabled artists and organisations in the sector. See The Guardian's Culture Professionals Network.
• Infinity Dance Theater
• International Center on Deafness and the Arts
• United Disability Services
• National Arts & Disability Center (promotes the full inclusion of audiences and artists with disabilities into all facets of the arts)
• National Federation of the Blind (voice of the nation's blind)
• National Institute of Art and Disabilities
• New York Foundation for the Arts (NYFA). NYFA’s online searchable database provides listings of sponsors, art grants, and fellowship programs for the disability community. It also provides a hotline to help artists navigate NYFA’s programs and database (1.800.232.2789).
• SignStage (a division of the Community Services for the Deaf and Hard of Hearing Department, within the Cleveland Hearing & Speech Center)
• Theater Breaking Through Barriers (advances the careers of artists with disabilities in New York City)
• VSA Arts, the International Organization on Arts & Disability (based at the Kennedy Center, formerly Very Special Arts, and before that the National Committee - Arts for the Handicapped)
• VSA Arts Registry.
Again, see fuller descriptions, addresses, and so on, on the NEA webpage, Organizations that Assist Artists with Disabilities
• The Katherine Schneider Journalism Award for Excellence in Reporting on Disability (National Center on Disability and Journalism), the only journalism contest devoted exclusively to the coverage of people with disabilities and disability issues, with awards of $5,000, $1500, and $500 (totaling $17,000). Accepts print, broadcast, and online entries. Administered by the National Center on Disability and Journalism, headquartered at the Walter Cronkite School of Journalism and Mass Communication at Arizona State. See Writing Disability Right.
• The Disability History Association Publication Awards to scholars in all fields who engage in work relating to the history of disability. Open to all authors covering all geographic areas and time periods, publications must be in English, must have significant historical content, and must have a publication date within the year preceding the submission date (i.e., 2018 for the 2019 award cycle). Annual prizes for Outstanding Book and for Outstanding Article/Book Chapter.
• Pen 2 Paper Creative Writing Competition (P2P) (Coalition of Texans with Disabilities) This disability-focused creative writing competition presents awards for fiction, non-fiction, poetry, and comics that treat the topic of disability. While P2P is based in Texas, people from other states or countries are welcome to enter. See press release (Oleb Books launches new award for writers with disabilities, 1-31-19)
• Easterseals Disability Film Challenge recognizes the talent and hard work that goes into producing a short film in a single weekend by presenting four awards to film challenge participants: Best Film, Best Director, Best Actor and Best Awareness Campaign.
• The Dolly Gray Children's Literature Award was initiated in 2000 to recognize authors, illustrators, and publishers of high quality fictional and biographical children, intermediate, and young adult books that appropriately portray individuals with developmental disabilities. The award is a collaborative work by members of the Division on Autism and Developmental Disabilities (DADD) of the Council for Exceptional Children (CEC) and the Special Needs Project (a distributor of books related to disability issues). Every even year, an award is presented to an author and illustrator (if appropriate) of a children's picture book, an intermediate, and/or a young adult book that includes appropriate portrayals of individuals with developmental disabilities.
• The London Writers Awards The London Writers Awards is Spread the Word’s annual development programme for talented London writers. The aim of the Awards is to increase the number of writers from under-represented communities being taken up by agents and publishers. The Awards support 30 London-based writers of colour and working class, LGBTQ+ and disabled writers each year.
• Scholarships for students with disabilities (Student Disability Services, Central Connecticut State University)
• CCCC Disability in College Composition Travel Awards CCCC presents six awards designed to support scholarship dedicated to improving knowledge about the intersections of disability with composition and rhetoric, the value of disability as a source of diversity, inclusive practices and the promotion of access, and the value of disability as a critical lens. The awards are to be used for travel assistance, based on review of accepted CCCC Annual Convention program proposals.
• Media Access Awards (MAA) Founded in the late 1970s by Norman Lear, Fern Field, and Norman G. Brooks, the MAAs advanced the portrayal and employment of people with disabilities. Unfortunately, after many years of success, the MAA lost its funding in 2007 and was on hiatus. MEDIA ACCESS will now team up with Easterseals to expand its reach, broaden its mission, and insure its continuation for many years to come. Easterseals will assist the awards in heightening the awareness of the full inclusion of disabled characters in all media and full employment of disabled actors, writers, and all behind-the-scenes talent -- to get Hollywood to recognize and embrace America’s largest minority group – the 61 million people with disabilities.
• Adams, Rachel. Raising Henry: A Memoir of Motherhood, Disability, and Discovery ""We learn from Adams what it means to have a son very different from most others in mind and body, whose future is uncertain, but whose life is infused with love and so worth living."—Jerome Groopman
• Bernstein,Jane. Loving Rachel (about life with a blind daughter)
• Bouton, Katherine. Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You (Bouton tells her story about adult onset of profound deafness, and profiles others with similar losses -- an opera singer, a pastry chef, a psychoanalyst, and, as Jerome Groopman writes, "offers a wealth of information and insight about a frustrating and isolating condition."
• Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor
• Brownsworth, Victoria A. and Susan Raffo, eds. Restricted Access: Lesbians on Disability . Contributors to this anthology write about the reality of being a "member of a doubly marginalized group in a phobic society," and often homophobic doctors--and write about a range of disabilities (including those from birth defects, AIDS, deafness, chronic fatigue syndrome, mental illness, cerebral palsy).
• Callahan, John. Don't Worry, He Won't Get Far on Foot "Without self-pity or self-righteousness, this liberating book tells us how a quadriplegic with a healthy libido has sex, what it's like to live in the exitless maze of the welfare system, where a cartoonist finds his comedy, and how a man with no reason to believe in anything discovers his own brand of faith."
• Chorost, Michael Rebuilt: How Becoming Part Computer Made Me More Human. Severely hearing-impaired since birth, Chorost abruptly went totally deaf in 2001. Fascinating account of the human side of cochlear implants.
• Crosby, Christina. A Body, Undone: Living On After Great Pain. "In her surgically incisive descriptions of how it feels to live in her ravaged body and to redefine herself within extreme new limits, Crosby resists both self-pity and the too-easy narrative of hardship overcome. Instead, she asks readers to recognize how messy, precarious, and queer, in every sense of the word, life in a body can be."~ Michael M. Weinstein, A Professor’s Memoir of Life Inside a Ravaged Body (New Yorker, 4-11-16)
• Dubus, Andre. Meditations from a Movable Chair and the earlier collection of essays Broken Vessels (both written after a 1986 highway accident left him largely confined to a wheelchair, and only some essays deal with his response to the accident and his view of life from a wheelchair)
• Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth
• Galli, Richard. Rescuing Jeffrey (an account of the gut-wrenching decisions Jeffrey’s parents face in the ten days after an accident leaves him paralyzed from the neck down)
• Gordon, Mary. Circling My Mother (Gordon's memoir of her Irish Catholic mother, deformed by polio, eventually suffering dementia—and of their complex mother-daughter relationship)
• Hockenberry, John. Moving Violations: Moving Violations: War Zones, Wheelchairs, and Declarations of Independence
• Hull, John. Touching the Rock: An Experience of Blindness (from sight problems at 13, gradually becoming blind)
• Jezer, Marty. Stuttering: A Life Bound Up in Words. See Randy Holhut's obit for Jezer and Saying Goodbye to Marty Jezer (Joyce Marcel, Common Dreams)
• Kleege, Georgina. Sight Unseen (marginally sighted and legally blind at 11 from macular degeneration, Kleege explores the meaning and implications of blindness and sightedness, reminding us that only a fraction of blind people see nothing at all)
• Kuusisto, Stephen. Planet of the Blind (blind in one eye and nearly blind in the other, at his mother’s urging he feigns sightedness until coming to terms with his condition) and Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, the author learns to live by ear)
• Lodge, David. Deaf Sentence: A Novel I include this serio-comic novel here because it is so good at conveying the way the world "sounds" to a deaf person, and because it is at least somewhat autobiographical. Read How hiding his deafness ruined novelist David Lodge's life (Moira Petty's story, MailOnline, 5-20-08, about how Lodge concealed his deafness). "On average, it takes a person suffering from sight problems up to three years to do something about it, while those experiencing deafness wait up to 15."
• Luczak, Raymond. Assembly Required: Notes From a Deaf Gay Life . A personal account of growing up a deaf, gay man, straddling the worlds of the hearing and deaf, coming out as gay after enrolling at Gallaudet University, a university for deaf people in Washington, DC--his worldview shaped by issues of identity, literacy, technology, and family.
• Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled (wheelchair-bound from advancing multiple sclerosis, she offers "a Baedeker for a country to which no one travels willingly"). Check out also Carnal Acts , and Remembering the Bone House
• Price, Reynolds. A Whole New Life: An Illness and a Healing (spine cancer makes him paraplegic, but liberates his imagination)
• Rousso, Harilyn. Don't Call Me Inspirational: A Disabled Feminist Talks Back "Rousso is an activist, artist, educator, social worker, psychotherapist, writer, painter and advocate who has worked in the disability rights field. The book follows her journey from 'passing' - pretending that she didn't have cerebral palsy - to embracing her disability. In the late '70s, she began exploring her disability identity, and she writes with honesty and power." --Jewish Woman, Winter 2012
• Shea, Gerald. Music Without Words: Discovering My Deafness Halfway through Life After scarlet fever at age six damaged his cochlea, leaving him partly but severely deaf (unable to decipher consonants and certain vowels). How he compensated and adapted is fascinating, and as one reviewer says, his story is both an inspiration and a cautionary tale.
• Shinn, Kelley. A Crippled Cassandra (Intima, Fall 2013). After barely surviving meningococcemia and sepsis at 16, her legs "slowly amputated just below the knees, [her] arms and thighs debrided and skin grafted, she defies doctors, gets pregnant, and has and raises two children. "I have travelled much of the globe, including war zones; I have been mountain climbing, kayaking, dancing, and I’ve breastfed an infant while operating a tractor. " Here, "Taking a Firm Hold on the Moment".
• Shreve, Susan Richards. Warm Springs: Traces of a Childhood at FDR's Polio Haven (an "indelible portrait of the psychic fallout of childhood illness").
• Sidransky, Ruth. In Silence: Growing Up Hearing in a Deaf World
• Sienkiewicz-Mercer, Ruth and Steven B. Kaplan. I Raise My Eyes to Say Yes. (Encephalitis at 5 weeks left Ruth, a healthy baby, paralyzed and unable to speak normally. Diagnosed an imbecile at 5 years, she was eventually institutionalized and severely mistreated at a school for the mentally and physically disabled until a staff turnover brought her help, including a method for communicating.)
• Spradley, Thomas S. and James P. Deaf Like Me (parents of a child born deaf as the result of an epidemic of German measles, waste years avoiding sign language before learning how to communicate with their child)
• Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis)
• Wakefield, Darcy. I Remember Running: The Year I Got Everything I Ever Wanted-and ALS (another moving memoir of living and dying with ALS--and about her "fast-forward" life, "in which she applies for disability, leaves her job, and plans her own funeral as well as meets and moves in with her true love, buys a house, and gives birth to her first child."
• Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family (what it was like growing up hearing as the oldest child of deaf parents)
"It goes without saying, that if it goes without saying, it's gone." --Marcia Orland
***FIVE WISHES. Put this Aging with Dignity document and task at the top of your to-do list. Expressing your Five Wishes lets your family and doctors know:
* Who you want to make health care decisions for you when you can't make them.
* The kind of medical treatment you want or don't want.
* How comfortable you want to be.
* How you want people to treat you.
* What you want your loved ones to know.
Kristie Miller's Letter of IntentLet your family and friends know what you want done if you are ill, incapacitated, or facing the end of life. Kristie Miller did just that in the following selection, first published on December 5,2003, and reprinted here by permission.
"Do you have a letter of intent?" my doctor asked during my annual physical exam last spring, after posing her standard questions about using my seat belt and checking my smoke alarm batteries.
Was a letter of intent the same as a living will, I asked, referring to the directive that explains one's wishes for ceasing heroic measures in the case of a persistent vegetative state.
No. A letter of intent is not about ending life, but about what I would want out of life if a stroke or other disability reduced my mobility and perhaps even made it impossible for me to express my wishes.
A wonderful idea, this. At my time of life -- 59 next Tuesday -- I have a number of elderly friends and relations whose wishes I try to intuit, with who knows how much success.
A letter of intent, therefore, would seem to promise comfort not only to me, but also to my children or other caregivers.
Nevertheless, I've put it off. I've been busy, sure, but it's also the sort of thing it's hard to think about when one is, if not in the prime of life, at least in reasonably robust good health.
As my birthday looms, it seems like a good time to grapple with what I'd like in my decline.
So here goes:
"Here are some of the things that would make me happy.
"Sunshine, first of all. Park me in a sunny spot every morning, please. Maybe with a view of a bird feeder. If it's cloudy, try one of those lamps that are said to mimic the sun's stimulating effect.
"Next, massage therapy. Even now, I like to get body work on a regular basis. A good brisk professional massage does wonders for my back when it's stiff from hours at the computer keyboard. It also soothes my arthritic feet and hands. In general, it improves circulation, aids relaxation, and leaves me happy and mellow. Old folks whose partners have died are often starved for human touch. And even non-professionals can give a good back rub or a little foot massage.
"I'd like to have nearby a tape recorder (or whatever technology has replaced it by then). I may not be able to follow new material, but play me recordings of stories that I've known for years. W. Somerset Maugham's and O. Henry's short stories; P. G, Wodehouse and James Thurber for fun; and the novels of Jane Austen.
"Poetry, too -- John Donne, Stephen Crane, the sonnets of Edna St. Vincent Millay, and anything in the Mack, Dean and Frost anthology I had in a college class with the poet Daniel Hughes forty years ago. You will find it on my bookshelf, read to tatters. When you have time, your own dear voices reading those selections would give me great pleasure.
"And music! Robert Schumann's Piano concerto in A Minor, Mozart's Requiem, anything by Beethoven. And of course, rock and roll songs from the Fifties and Sixties!
"I've never been much of a gardener, but I think I'd like to have some plants nearby. I love lilacs, and narcissus, especially the ones planted in gravel that I could watch open day by day.
"Pets are good company. Perhaps an older dog from the pound, who would lie quietly with her head in my lap. A bird might be nice, too, like the parakeet we used to have, hand-raised so it was tame enough to land on my shoulder.
"I'm looking forward to being old enough it won't matter anymore what I eat! I'll want eggs every morning, and the dark meat of chicken, both of which I strictly ration now. I hope I can still enjoy fruits -- almost any kind, though I have a special fondness for stewed apricots or fresh raspberries.
"Thank you for looking after me. I hope it gives you one tenth of the pleasure it gave me to look after you when you were small."
There, I've done it. You do it, too, if not today, then at least on your next birthday.
Copyright News Tribune, La Salle IL. Reprinted by permission of Kristie Miller, author of Isabella Greenway: An Enterprising Woman.
Kristie Miller's website
• Fictional characters with disabilities
• Books featuring characters with disabilities (Goodreads)
• 10 Captivating Books That Portray Disease and Disability Through Fiction (Rachel Kassenbrock, The Mighty)
• Wonder by R. J. Palacio (for kids). August Pullman is a 10-year-old boy who likes Star Wars and Xbox, ordinary except for his jarring facial anomalies.
• Out of My Mind by Sharon Draper (for kids) Melody can't walk, talk, or do normal daily activities for herself, but she has a photographic memory and the camera is always running.
• The Running Dream by Wendelin Van Draanen (for teen and young adult readers) Jessica thinks her life is over when she loses a leg in a car accident. She's not comforted by the news that she'll be able to walk with the help of a prosthetic leg. Who cares about walking when you live to run?
• It's Kind of a Funny Story by Ned Vizzini (for mature teens). a poignant and sometimes humorous tale about navigating adolescence and depression
• El Deafo by Cece Bell (grades 2 to 6) Cece loses her hearing from spinal meningitis, and takes readers through the arduous journey of learning to lip read and decipher the noise of her hearing aid, with the goal of finding a true friend. "'It's an honest and rather sweet tale of a girl coming to terms with her disability, and as such the kind of story that will strike a chord with any child who has felt ostracised or different." ~The Busy Librarian
MORE TO COME~!