DYING, ILLNESS, AND AGING WITH GRACE

Selected Works

Quick Links

(Resources on illness, addiction, death and dying, loss, grief, and positive aging)
• Index of comfortdying.com site
• Index of blog posts

• Writers and Editors website
• Index of Writers and Editor website (writersandeditors.com)

• Pat McNees site (patmcnees.com)

About Pat and topics specific to her, her work, and her interests

Disability

Abuses, issues, and changes in the treatment of people with disabilities

Articles and essays about living with a disability
Awards for writing about disabilities
Blogs, websites about traveling with disability
Changing attitudes about disability
Covering (reporting on) disability
Disabilities style and media guides
Disabilities sports and outdoor activities
Disability statistics (U.S.)
The legal and financial aspects of living with a disability
Memoirs about living with a disability
Organizations that help artists with disabilities
Practical angles, medical equipment, devices, resources, tips on living with a disability

(including medical equipment)
Rights of the disabled
Traveling with limited mobility and other disabilities
Writing about people with disabilities

ON ANOTHER PAGE
Assistive devices, remodeling, and other ways to enable independent living
Deafness and hearing loss
Practical angles on living with a disability, a handicap, or problems of aging

Practical angles on living with a disability, a handicap, or problems of aging

Practical devices, medical equipment, assistive technology, housing, resources, sources, tipsSometimes its enough to know an item exists, so we can look for one.Lots of items here I'd never heard of, until I started researching.Let me know if something really useful is missing. I add material continually.

• AARP Homefit Guide Smart ways to make a home comfortable, safe and a great fit for older adults — and people of all ages.

Grab bars and stair rails can make a home safer. Here, a dozen AARP HomeFit Do's and Don'ts.

Articles and essays about living with a disability

• DeafBlind Communities May Be Creating a New Language of Touch (Andrew Leland, New Yorker, 5-12-22) Protactile began as a movement for autonomy and a system of tactile communication. Now, some linguists argue, it is becoming a language of its own.
"Hundreds of thousands of people in the U.S. have some combined hearing and vision loss, but most are older adults and have spent the bulk of their lives hearing and sighted. A much smaller group—about ten thousand, according to some estimates—become DeafBlind earlier in life; a leading genetic cause is Usher syndrome.
• ‘I Try To Stay Strong’: Mom Struggles To Get Diagnosis for Son’s Developmental Problems (Sejal Parekh, KFF Health News, 6-12-24) An Alameda County mother has spent 10 months seeking help for her 4-year-old son’s speech and behavior issues from his school district and her Medicaid health insurer. She still doesn’t have an answer.
• Meet the Sisters Who Co-Founded a Dating App for People With Disabilities (Rebekah Brandes, Nice News, 2-10-24) "Available on iOS, Android, and the web, the platform is designed to fit in with modern, mainstream dating apps. It has all the familiar features, such as swiping on a match and setting a specific location to search within. What sets it apart are sections like Dateability Deets, which allows its nearly 14,000 users from all over North America to select from an extensive list of broad terms like intellectual disability, neurodivergent, and immunocompromised."
• My heart almost stood still: A remarkable letter of thanks to the New York Symphony Orchestra (Helen Keller's letter, reprinted on Letters of Note, 2-2-24) 'I have the joy of being able to tell you that, though deaf and blind, I spent a glorious hour last night listening over the radio to Beethoven’s “Ninth Symphony.” '
• The hidden history of screen readers (Sheon Han, The Verge,7-14-22) For decades, blind programmers have been creating the tools their community needs. Motorcycle racer Ted Henter, blinded in a car accident, learned to program by typing code out on the terminal and having a volunteer read the screen back to him. "Blind programmers shouldn’t have to be the ones writing tools for blind people. But nevertheless, they’ve done exactly that. They have built — sometimes on top of each other, sometimes chaotically and in parallel — software that is life-changing in the literal sense"

"JAWS dates back to the same generation of software as Internet Explorer 1.0, which officially retired last month after 27 years. The fact that JAWS has retained its usage share makes it an even greater rarity. The browser Mosaic, heralded in 1994 as the “world’s standard interface,” lasted only two years at the top before Netscape took over the market. Three years later, the majority of users were using Internet Explorer, which was overshadowed by Chrome just in twelve years. Chrome has reigned supreme for about a decade. JAWS has been the gold standard of screen readers for almost three times as long of a period."
• DeafBlind Communities May Be Creating a New Language of Touch (Andrew Leland, New Yorker, 5-12-22) In the absence of a shared language, people will create new ones. Protactile began as a movement for autonomy and a system of tactile communication. (Picture Annie Sullivan in "The Miracle Worker" teaching deaf-blind Helen Keller to read by placing her hand under a stream of water while finger-spelling W-A-T-E-R.) Now, some linguists argue, it is becoming a language of its own.
• ‘Where the bats hung out’: How a basement hideaway at UC Berkeley nurtured a generation of blind innovators (Isabella Cueto, STAT, 3-28-22) Its university-sanctioned name was the blind students study center. But pretty much everyone called it The Cave. It showed that genius is forged by community, in the sharing of information, tools, and resources. That disability is not a curse. Like a lot of young adults, students in The Cave wanted to get out of their hometowns, out from under well-intentioned, overprotective parents. Berkeley, as a safe harbor for outcasts of all kinds, was their chance. Life with a disability is much richer, more complex than the myths we are sold. It’s a tale of networks and inventiveness, and of the devastatingly ordinary yearning to be witnessed in our entirety. Not as superhuman or subhuman; just as human.

[Back to Top]

• Forty years after an acid attack, a life well lived (Wendell Jamieson, NY Times, 3-3-13) Joshua A. Miele was 4 when a next-door neighbor came to the gate of his family’s home in Brooklyn and tossed sulfuric acid into his face, blinding him. How he succeeded in life despite being sightless and visibly scarred.
• Many doctors are still befuddled by accommodating people with disability (Lisa I. Iezzoni, Opinion, STAT, 1-13-22) The ADA requires that physicians and/or clinical staff discuss accommodation needs with their patients with disability and collaborate in making reasonable accommodation decisions, emphasizing patients’ preferences. Yet many physicians are unclear about their responsibilities under the ADA.
• Raising kids with disabilities inspires Wilsonville author (Corey Buchanan, Wilsonville Spokesman, 6-15-21) All three of Susan Traugh's children ended up mentally or physically disabled. She has made a living writing dozens of books for educators across the world that provide instructions on how to navigate life with a mental or physical disability. "I went looking for something, and there wasn't anything out there, so I started writing it," she said. Traugh hopes her work illustrates that people with disabilities are not "screwups," as some may view them, but brave and heroic. "They're people struggling against incredible odds to make their lives work, and I want people to see the hero in those kids," she said.
• My Husband Wasn’t My Savior. I Am. (Brenda Arredondo, Opinion, NY Times, 12-5-19) When my husband decided he no longer wanted a wife with a disability, I was thrown into a struggle to rebuild my life. (Lots of links to related articles.)

[Back to Top]

• Happily married couple considers divorce to pay for daughter's health care costs (Eun Kyung Kim, Today, 7-11-18) The Texas couple says it's the only way to help their daughter's skyrocketing health care bills. The couple has tried to get Medicaid to help with spiraling medical costs but Jake earns too much — $40,000 — for the family to qualify.
• About Us: Essays from the Disability Series of the New York Times, edited by Peter Catapano and Rosemarie Garland-Thomson. Based on the historic New York Times series, About Us features intimate, firsthand accounts on what it means, and how it feels, to live with a disability.
• Forced to Divorce: Americans With Disabilities Must Pick Marriage or Health Care (Carly Stern, Ozy, 4-24-19) Outdated regulations are forcing a choice between love and social security. Many Americans with disabilities must pick only two out of three: marriage, economic security and comprehensive health coverage.
•Pandemic Upends the Lives of People With Disabilities — and of Their Caregivers (Bram Sable-Smith, Wisconsin Public Radio and KHN, 6-17-2020) For residents with disabilities who need caregivers in order to live and work independently, the pandemic is adding hurdles. These visiting aides take on demanding duties and are typically paid about $12 an hour in Wisconsin. Clients with disabilities and their caregivers must weigh how to keep each other safe during close interactions, especially as protective equipment remains scarce. Some caregivers have stuck around; others have quit. And many clients who lose their caregivers also lose independence. (This is also true of many elderly people.)

[Back to Top]

• This woman has helped more than 4,500 disabled people get jobs (Arundhati Nath, CS Monitor, 12-22-16) When Shanti Raghavan’s brother started losing his sight, she helped him acquire skills and find employment, and then helped found EnAble India in Bangalore, offering employability training to disabled people and working closely with companies to get jobs for these individuals.
• Writing Fantasy Lets Me Show the Whole Truth of Disability (Ross Showalter, Electric Lit, 10-1-2020) In speculative fiction, I can center the disabled experience in a way that feels more real than realism. "I had learned the difference between Deaf (a cultural label) and deaf (a medical label), and I was starting to claim my Deaf identity and affirm myself under that label, within that community....I couldn’t find anything that reflected my real experience....Speculative fiction gave me insight on how to write disability in ways that defied the convention of the weak disabled person....Paranormal fantasy hit harder—and felt more relevant to my experience—than any realistic portrayal of deafness I found."
• People with Developmental Disabilities Were Promised Help. Instead, They Face Delays and Denials. (Amy Silverman for Arizona Daily Star, with data analysis by Alex Devoid, Arizona Daily Star, on ProPublica, 11-6-2020) Arizona is known as the best state in the nation for people with developmental challenges. But its Division of Developmental Disabilities has turned down thousands of people who seek assistance because of paperwork issues.
• 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."

[Back to Top]

• 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.
• I Feel Like an Imposter in the World of Disabilities (Karin Camposagrado, Club11 Health) "I often don't feel like I fit in with the "normal" crowd or the "disabled" crowd, and that may be the hardest part of living with a disability, for me."
• 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.

[Back to Top]

• He Felt Isolated and Adrift After an Autism Diagnosis. Can He Make It as a Cybersleuth? (Renee Dudley, ProPublica, 9-7-22) Highly educated autistic people have long found work in tech — but now two Dutch entrepreneurs are training socially isolated autistic dropouts and finding productive jobs for them. The approach could be a model for America.
• 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.”

[Back to Top]

• 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.

[Back to Top]

• 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)
• Seeking a Lover, Not a Nurse (Alicia Loh, Modern Love, NY Times, 5-5-23) Disability shouldn’t make someone undesirable or impractical as a romantic partner.
• Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Taussig. "Growing up as a paralyzed girl during the 90s and early 2000s, Rebekah Taussig only saw disability depicted as something monstrous (The Hunchback of Notre Dame), inspirational (Helen Keller), or angelic (Forrest Gump). None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling."
• 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.

[Back to Top]

Abuses/issues/improvements in the treatment of people with disabilities

• The Ones We Sent Away (Jennifer Senior,The Atlantic, featured in One Story to Read Today, 8-7-23) Jen Senior writes about her aunt, Adele, who was institutionalized as a toddler because of an intellectual disability, and the life she could have lived.

• The Incredible Life and Works of Fibre Artist Judith Scott (Nazmiyal Collection) Judith Scott was born with Down syndrome and experienced deafness, which made her early life challenging. At the age of seven, she was placed in an institution for individuals with intellectual disabilities. In 1987, when she was 44 years old, her twin sister, Joyce Scott, discovered Judith in the institution and brought her home, and introduced her to the Creative Growth Art Center in Oakland, where she found her passion in fiber art.
• For Hire: Dedicated Young Man with Down Syndrome (Michael Bérubé, Projects Al Jazeera America, 5-25-14) A father reflects on his son's search for employment. Wonderful.
• The Disability Tax: Medical Bills Remain Inaccessible for Many Blind Americans (Lauren Weber and Hannah Recht, KHN, 12-2-22) A Missouri man who is deaf and blind said a medical bill he didn’t know existed was sent to debt collections, triggering an 11% rise in his home insurance premiums. An insurer has suspended a blind woman’s coverage every year since 2010 after mailing printed “verification of benefits” forms to her California home that she cannot read, she said. The issues continued even after she got a lawyer involved. Local utility companies often manage to send bills to visually impaired customers in large type every month. Surely medical facilities can do the same.
• 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[1] 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.
• “Kids Seem to Be a Paycheck”: How a Billion-Dollar Corporation Exploits Washington’s Special Education System (Lulu Ramadan, Mike Reicher and Taylor Blatchford, The Seattle Times and ProPublica, 12-4-22) Universal Health Services collected more than $38 million in tax dollars for special education services that families and former teachers say it largely didn’t provide. Before UHS acquired its first therapeutic day schools in 2005, the company — the largest operator of psychiatric hospitals in the country — had no previous experience operating this type of specialty school.
• Invisible Schools (Mike Reicher and Lulu Ramadan, The Seattle Times and ProPublica, 11-26-22) At Washington special education schools, years of abuse complaints and lack of academics. Washington state spends millions sending students with disabilities to an obscure network of private schools. But what happens inside the schools is a mystery. No test scores. No discipline records. The alarming reports cataloged a failure to serve kids with disabilities at the Northwest School of Innovative Learning, a private school designed to cater to Washington’s most vulnerable students.
• At Washington State Special Education Schools, Years of Abuse Complaints and Lack of Academics (Mike Reicher and Lulu Ramadan, The Seattle Times and ProPublica, 11-26-22) Northwest SOIL promised to help students with serious disabilities. But when school districts urged action, the state allowed let the private school stay open and tap a pipeline of taxpayer money. In the five school years ending in 2021, Northwest SOIL collected at least $38 million and took in hundreds of public school students. “Northwest SOIL is an example of turning back the clock 50 years on kids” to an era when people with disabilities were denied access to education. The state “needs to be more hands-on to ensure that these kids are getting a proper education and not just feeding a money horse for UHS,” said Donna Green, Northwest SOIL’s top administrator in 2021, who later resigned.
• 10 Quick Wins to Make Your Organization More Disability Inclusive (Simon Holt, Erin Osborne-Martin, Miguel Ramos, Matthew Salter, Karen Stoll Farrell, The Scholarly Kitchen, 12-12-22) Volunteers are partnering with C4DISC to build a Toolkit for Disability Equity in the Scholarly Communications Industry, following on from the excellent antiracism and inclusive language toolkits already published.
• A Disabled Young Patient in Illinois Was Sent to Get Treatment. He Was Abused Instead. And He Wasn’t the Last. Beth Hundsdorfer, Capitol News Illinois, and Molly Parker, Lee Enterprises Midwest, with ProPublica, 9-2-22) The 24-year-old with developmental disabilities was brutally beaten by his caretakers inside a state-run facility with a long history of patient abuse. Located about 120 miles southeast of St. Louis, Choate serves people with the most profound disabilities in the state. Reports include roughly 800 claims of physical abuse, 100 of sexual abuse, and 600 of mental abuse, financial exploitation, or neglect.The investigation found that employees who abuse residents or engage in other misconduct face few serious consequences. IDHS does not track employee arrests at its mental health and developmental centers.
• At a Remote Mental Health Facility, a Culture of Cruelty Persists Despite Decades of Warnings (Molly Parker, Lee Enterprises Midwest, and Beth Hundsdorfer, Capitol News Illinois, ProPublica,9-2-22) Federal and state officials have urged reforms at the rural facility for people with mental and developmental disabilities. But the state-run center still has more allegations of abuse and neglect than any other in Illinois.
• 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.
• Birth Rights:Investigating Florida’s NICA Program---Accused of Refusing Aid to Disabled Kids, a State Agency Responded — by Hiring a PR Firm Charging nearly $200k, the firm promised to help Florida’s NICA program “win in the court of public opinion.” But in the end, state lawmakers insisted that administrators listen to parents and make changes.
---At Last, Florida Families Hit Hard by Their Children’s Birth Injuries Are Promised More Help The chairman of Florida’s NICA board gave parents of children born with brain injuries the message some of them waited decades to hear: “You have been heard.”
---Florida Program to Aid Brain-Damaged Kids Often Told Families No. It’s Promising to Change. The program promised support while taking away parents’ right to seek justice. Instead, NICA often forced parents to go through the state’s Medicaid safety net first — including appeals. Now, a proposed set of rules could change the approach.
---To Get a Shot at Justice, They Were Forced to Prove Their Disabled Daughter’s IntelligenceTo qualify for Florida's NICA program, infants must suffer “substantial” damage to both body and mind. Though her body was broken, Brooklyn Grant’s mother and teachers knew she was smart. This is how they stood their ground — and won.
• 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."

[Back to Top]

Writing about people with disabilities

Also, 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)
• Writing About People With Disabilities (Journalist's Toolbox, curated by the Society of Professional Journalists)
• The best mysteries featuring ill or disabled sleuths (Kate Michaelson, Shepherd) Featuring Amelia Emmet, Joseph O’Loughlin, Lana Rubicon, Lincoln Rhyme, Chris Theodorakis--characters you're unlikely to forget.
• 4 key tips for reporting on and writing about people with disabilities (Chloe Reichel, Journalist's Resource) Tip #1: Let people with disabilities speak for themselves. Tip #2: If you’re not sure how to describe a person with a disability in a story, just ask how the person would like to be characterized. Tip #3: Include people with disabilities in stories that aren’t explicitly about disability.
• Guidelines for Writing about People with Disabilities (ADA National Network, Information, Guidance, and Training on the Americans with Disabilities ACT)
• Disabilities style and media guides (for Writers and Editors)
• Guidelines: How To Write About People with Disabilities (University of Kansas, Research & Training Center on Independent Living)
• Communicating About People with Disabilities (National Disability Rights Network)
• Disability Reporting Handbook (developed by Media Diversity Australia to assist journalists reporting on disability)
• People with Disabilities (National Alliance on Mental Illness, aka NAMI)
• Guidelines for Writing About People With Disabilities Fourteen straightforward ways writers can use accurate, neutral and objective language.
• 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.
• Disability Terminology: A Starter Kit for Nondisabled People and the Media (s.e.smith, Feministe, 6-18-2010)

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."

[Back to Top]

Statistics about disability

• 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)

[Back to Top]

Blogs, sites, and organizations focused on disability

• Abled
• 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)
• Can-Do-Ability
• 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!

• Top 60 blogs and websites about parenting disabled and special needs children (Feedspot) One of many such lists, but one of the longest.
• Best Blogs for Moms with Special Needs Children (NeedQuest)
• Blogs, websites and other links and resources for parents of children with disabilities and chronic health conditions (Bloom Parenting)
• Best Special Needs Blogs and Websites (Feedly)
• 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.

[Back to Top]

"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

Disability sports and outdoor activities

• Adaptive Sports Organizations Lists local sport contacts by state.
• American Association of Adapted Sports Programs
• Adaptive sports programs (Amputee Coalition) Good directory of organizations supporting various types of adaptive sports, such as wheelchair basketball, prosthetic running, disabled golf, martial arts therapy, accessible boating, adaptive tennis, amputee soccer.
• Adaptive Sports (Paralyzed Veterans of America)
• Blaze Sports
• Canoeing and Kayaking for People With Disabilities by Janet Zeller
• International Wheelchair and Amputee Sports Federation (IWAS) sports for athletes with a physical disability (founder of the Paralympic Games)
• National Center on Health, Physical Activity and Disability (NCHPAD) Among other things, posts a directory of programs available for people with disabilities and health conditions.
• Para triathlon (first accepted for inclusion for the IPC’s Paralympic Games at Rio 2016)
• US Disability Soccer Network (Sportsability Alliance) Blind soccer, deaf soccer, Paralympic soccer, TOPSoccer (a community-based training program for athletes with intellectual, emotional, and physical disabilities), dwarf soccer, amputee soccer, Frame Soccer (participants "must require the use of crutches, walkers, or any gait- or walking-training equipment for everyday mobility purposes"). See also US Soccer Disability Network.
• Using technology to open up wilderness trails to people with disabilities (Emily Chen-Newton, All Things Considered, NPR, 10-11-23) Outdoor recreation played a larger role in the lives of many Americans since the start of the COVID-19 pandemic, including those with disabilities. The influx has highlighted the efforts of groups across the country working to ensure all hikers and bikers have access to outdoor spaces regardless of their disabilities. The aim is to have enough information online or in an app, so that people with disabilities can plan their trips in advance. Because without having to worry about surprise logistics like the device not fitting on the trail, people can get back to what really matters...the thrill of it.

[Back to Top]

Traveling with limited mobility and other disabilities

• 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.
• 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.
• 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).

[Back to Top]

Blogs and websites about traveling with disability

• 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
• DisabledTravelers.com
• Emerging Horizons (travel info wheelchair users and slow walkers)
• Flying with Disability
• Global Access News (Disabled Travel Network). See its disability links
• Kam Redlawsk / Kam’s Wheels Travel & Art I won't say a word about this delightful Facebook page, which feels like a blog to me, well-illustrated. Discover how interesting (and helpful) she is on your own. Watch her keynote speech, "It's OK to be different. In fact I highly advise it."
• 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)
• Wheels Travels (Renee Bruns, about traveling in a wheelchair) She Has Visited 110 Countries in Her Wheelchair (Rebekah Brandes, Nice News, 11-21-22)
• The World on Wheels (a blog). Tim, disabled from birth, travels with a wheelchair; Darryl, his father and caregiver, travels with him.

[Back to Top]

Rights of the disabled

• 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.
• A Landlord & Tenant’s Guide to Renting With a Disability (Turbotenant, 9-14-2020) One of several guides for landlords on how to manage their properties. Includes what you need to know about laws concerning disability and housing, accessible housing, plus an independent living checklist.
• Crip Camp: A Disability Revolution Documentary (available on Netflix, and not a "downer"!) about how a generation of disability advocates came together in their youth through a summer camp and later on banded together to fight for their rights in the oft-forgotten-but-very-important 504 Sit In, which paved the way for the passage of the Americans With Disabilities Act.
• 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)

[To Top]

Changing (or varying) attitudes about disability

• 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.)"
• What to Do When Your Kid Stares at Someone Different (Jaclyn Greenberg, Good Housekeeping, 8-5-23) Scolding them or whisking them away just teaches kids all the wrong things. Don't pull away. Be a role model.
• Parents With Disabilities Are Often Overlooked in Society (Fin Leary, Good Housekeeping, 4-16-21) But despite the challenges, kids raised by one or more disabled parents often benefit immensely from the experience.
• ‘A Chance to Live’: How 2 Families Faced a Catastrophic Birth Defect (Gina Kolata, NY Times, 3-28-24) Cases of trisomy 18 may rise as many states restrict abortion. But some women choose to have the babies, love them tenderly and care for them devotedly.
• Disability Visibility Project (lots of interesting articles)
• On the Ancestral Plane: Crip Hand Me Downs and the Legacy of Our Movements (Stacey Milbern, Disability Visibility Project, 3-10-19) "People sometimes assume ancestorship is reserved for those of biological relation, but a queered or cripped understanding of ancestorship holds that, such as in flesh, our deepest relationships are with people we choose to be connected to and honor day after day."

[Back to Top]

• We Should Claim Our Disabled Ancestors With Pride (Jennifer Natalya Fink, Opinion, NY Times, 2-27-22) After my daughter’s diagnosis, I began reclaiming my disabled kin. Finding disability lineage can mean learning to listen. To hear the untold story in euphemisms, silences and gaps. To read between the family lines. It means looking at old photos and noting the variety of bodies and minds you see... I’ve found that by sharing my daughter’s journey, my friends and family — our kin — are more inclined to share theirs." My grandmother's "hearing loss helped shape her extraordinary capacity for paying attention to me. In disability culture, this is called 'disability gain': the surprising benefits that an impairment can reap."
• Disability, Deformity, and Disease in the Grimms' Fairy Tales by Ann Schmiesing
• What Can a Body Do?: How We Meet the Built World by Sara Hendren. "I quickly realized that the tech would soon be outdated, while the foundational ideals that disability and design always raise would last much longer: How does "assistance" show up in all our lives, via eyeglasses or hearing aids, crutches and orthotic shoes, smart phones and pencils and scissors and chopsticks? And how does design for disability teach everyone, no matter the shape our bodies, about independence and interdependence; about the universality of our vulnerable, changing bodies; and about building lives worth living, with and without technology? The book is organized by objects to take the reader through all kinds of design: products, furniture, architecture, and urban planning—all written for the general-interest reader. “For Hendren, disability is not a problem to be solved or a flaw to be cured: diverse bodies generate alternative understandings of the built world and should encourage us to question what we accept as ‘standard.’”~The Baffler.
• Defining Disability (Katherine Bouton, Smart Hearing, 2-17-21) Accommodations such as "a quiet home, hearing aid and cochlear implant, captions on my phone, captioned Zoom meetings and TV – alleviate the hearing deficit to the point that I forget I have it. And that’s what we aim to do when we advocate for accommodations in the outside world. Without accommodations I would be disabled – I AM disabled. But only temporarily. By the author of Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You and Smart Hearing: Strategies, Skills, and Resources for Living Better with Hearing Loss

[Back to Top]

• Publishing must make room for disabled authors - for its own good (Frances Ryan, The Guardian, 9-4-2020) We are the biggest minority in the world. Paying attention is good business. See also Ryan's book Crippled: Austerity and the Demonization of Disabled People
• 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.

[Back to Top]

• 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)

[Back to Top]

• 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)

[Back to Top]

Covering disability (for journalists and others)

• Actors Access for Performers with Disabilities (SAG-AFRA)
• @DisabledWriters Increasing disability diversity in journalism, one connection at a time. Use our database to find disabled writers and sources for your media projects.
• 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)
• Did You Know? Invisible Disabilities (Center for Disability Rights)
• Critical Disability Studies (Purdue)
• 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
• Haymarket Anthology 'Against Ableism' Comes Under Scrutiny (John Loeppky, Publishers Weekly, 4-13-21) An open letter to Haymarket Books calls for Haymarket to disclose how the editors of an anthology in development were selected, asks whether any of the editors are autistic or otherwise neurodivergent, questioned a lack of non-cis editors, and asked whether “the editors and press have the community and political savvy to engage the vast umbrella of Disability?” The anthology, titled Against Ableism: An Anthology, was criticized for not planning to pay contributors, and because the "call for submissions that does not focus on identity-first language (i.e., “disabled person” versus “person with a disability”), and that the initial call did not include accessibility features like alt-text. The letter questioned a lack of non-cis editors, and asked if “the editors and press have the community and political savvy to engage the vast umbrella of Disability?” Loeppky touches on the pecking order of disabilities. One editor wrote "Who do I think I am? What right do I have to claim 'disability' when everyone knows mental illness isn’t really a disability, right?”
• 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
• On screen and on stage, disability continues to be depicted in outdated, cliched ways (Magda Romanska, The Conversation, 11-2-2020) Despite an increased sensitivity to gender and race representation in popular culture, disabled Americans are still awaiting their national (and international) movement....Typically, the disabled characters are limited to four types: the “magical cripple,” the “evil cripple,” the “inspirational cripple” and the “redemptive cripple.” ...What if their disability weren’t the thing to overcome but merely one element of one’s identity?This would require deconstructing the conceptual pyramid of past hierarchies, one that has long used disabled characters as props to illuminate conventional heroes."
• Organizations and sites helpful for improving life for seniors and the disabled (Comfortdying.com)
• Reporting on Assistive Technology (Amanda Morris, The Open Notebook, 3-7-23) Reporting on a device or equipment that helps those with disabilities do things that would otherwise be difficult should cover "what problems a product is supposed to help with, what went into its design, and how it might actually work as part of a disabled person’s day-to-day life." Avoid "the press-release trap by beginning with talking to disabled people about what they need or want." Look at disabled people as inventors and creators of technology, rather than (or in addition to) just users. Scroll down for "Questions to Ask When Reporting on Assistive Technologies."
"A lot of media coverage may focus only on a product’s debut, but better stories can be reported by following up months or even years later to see whether it was successful. If it wasn’t, that is worth reporting on, especially if public funding was involved in the project."
An example of a useful report: The hidden history of screen readers (Sheon Han, The Verge, 7-14-22)
• 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)
• Voices of Disability Economic Justice,a project of the The Century Foundation’s Disability Economic Justice Team, is a commentary series that shines a light on the economic disparities that disabled people experience to support our mission of shifting policies and practices toward finally achieving economic security and justice for people with disabilities in the United States. Central to this series is a focus on amplifying the perspectives of disabled people with multiple overlapping marginalized identities—particularly disabled people of color and LGBTQIA+ disabled people. If you have a story to share or a viewpoint to express that addresses economic justice issues through a disability lens, send us a pitch! Payment for published pieces is $500.
• 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
• Why people with disabilities deserve better than the ‘checkbox’ approach (William Heisel, Investigating Health, Center for Health Journalism, 1-10-2020) Embry Owen has lived with her own disability — caused by a traffic accident — for the past few years. She now works in web design and accessibility in Philadelphia. Embry suggests that designers and developers consider whether people with disabilities have actually been included in the planning of a particular building or space, or if accommodations look like an afterthought....
Heisel: "Though I didn’t have the vocabulary for it yet, I was trying to navigate illegibility. There are millions of people trying to navigate illegibility around the world. They have differences in their brains and bodies that are truly invisible." See Did You Know? Invisible Disabilities (Center for Disability Rights) "Remember that a person may not have a physically obvious disability. Sometimes these are referred to as non-apparent impairments, hidden disabilities, or invisible disabilities....So what are some of these non-apparent impairments or illegible disabilities? They could be learning disabilities, brain injuries, chronic pain, arthritis, degenerative brain diseases like Alzheimer's, mental health conditions like anxiety, or diseases such as diabetes and Crohn's disease."

• Writing About People With Disabilities (Mike Reilley, Journalist's Toolbox, SPJ, 10-23-19) resources on disability and accessibility)

"Those who say it cannot be done should notinterrupt the person doing it." ~ Chinese Proverb

[Back to Top]

The legal, financial, and practical aspects of living with a disability

• Special Needs Grants (Kaufman Children's Center's excellent links)
---Grant Search Engines
---Autism Grant Sources
---Grants for Travel Expenses
• Supplemental needs trusts and planning for disabled children (ElderLawAnswers)
• Universal design in non-discrimination law (Zero Project, Innovative Policy 2014 on Accessibility, Norway) Only a few countries require the application of universal design and establish that inaccessibility is a matter of discrimination. In Europe, Norway is, along with Spain, one of those countries that actively promote both concepts and practice in universal design. In Norway universal design is an enforceable legal standard.
• UN Convention on the Rights of Persons with Disabilities (CRPD)
• Disability Planning (ElderLawAnswers)
• How to apply for SSI

[Back to Top]

• Advance directives, living wills, Medicare, and other practical matters
• Benefits and Insurance for People with Disabilities (USA.gov)
• Disability Benefits (under Social Security, elsewhere on this website)
• 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.
• 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.

[Back to Top]

• 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.

[Back to Top]

• The high cost of living in a disabling world (Jan Grue, The Guardian, 11-4-21) A "long read," and worth the time spent reading it! For all the advances that have been made in recent decades, disabled people cannot yet participate in society ‘on an equal basis’ with others – and the pandemic has led to many protections being cruelly eroded. We need to have a different conversation about disability.
• 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

[Back to Top]

Organizations that help artists with disabilities

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)
• DeafMedia
• 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

[Back to Top]

Awards for writing about 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.

[Back to Top]

Memoirs about living with a disability

• 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)
• Gleason, Steve and Jeff Duncan. A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence. See article: 'A Life Impossible' chronicles all aspects of Steve Gleason's incredible life (John DeShazier, New Orleans Saints, 5-9-24)
• 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)
• Heumann, Judith and Kristen Joiner Being Heumann: An Unrepentant Memoir of a Disability Rights Activist “A driving force in the passage of the Americans With Disabilities Act looks back on a long career of activism . . . A welcome account of politics in action, and for the best of causes.” ~ Kirkus Reviews. “Full of stories of triumph, love, and total badassery..." ~Nicole Newnham and Jim LeBrecht, directors of Crip Camp
• 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
• Marshall, Greg. Leg: The Story of a Limb and the Boy Who Grew from It. Not until adulthood did Marshall learn that he had cerebral palsy; his parents attributed his limp to tight tendons. About growing up as a gay kid in Utah, his father with ALS, his mother with cancer.
• 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)
• Hearing Happiness: Deafness Cures in History "Part memoir, part historical monograph, Virdi’s Hearing Happiness breaks the mold for academic press publications." ~ Publishers Weekly
• 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)
• Wong, Alice, ed. Disability Visibility: First Person Stories from the 21st Century “A glimpse into the complexity and diversity of the disability experience." "Wong, the founder of the Disability Visibility Project and a cofounder of the voting rights movement #CripTheVote, was born with a neuromuscular disability and has made it a mission to connect the diverse voices of disabled people who appear in the anthology and project them into public conversation."

[Back to Top]

"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 Intent

Let 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:

"Dear Children,

"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

Fiction featuring characters with disabilities

or chronically ill

• Crime Fiction Book List: Disabled Isn’t Unable (Beyond Rivalry) Includes books and series featuring a character whose physical, emotional or mental limitations figure in the plot or character development of the stories or series. The character may be disabled in some way but is still able to solve, or perhaps commit, crimes.
• Fictional characters with disabilities (Wikipedia)
• 9 Middle Grade Novels With Disabled Main Characters (Margaret Kingsbury, Book Riot, 5-4-21)
• 21 YA Novels With Disabled and Chronically Ill Characters (Margaret Kingsbury, BuzzFeed, 7-28-21)
• 22 Novels Featuring Characters With Disabilities And Chronic Illnesses (Margaret Kingsbury, BuzzFeed, 7-21-21) From compulsive thrillers to heartwarming romances.
• 15 Romantic Novels That Feature Characters With Disabilities (Kaley Rohlinger, PopSugar, 11-11-20)
• 9 Ableist Tropes In Fiction I Could Do Without (Margaret Kingsbury, Book Riot, 2-21-22) Ableist stereotypes are so coded into storytelling that it becomes second nature for writers — particularly non-disabled writers — to use them. Disabled writer Amanda Leduc discusses this in her fantastic analysis combined with memoir Disfigured: On Fairy Tales, Disability, and Making Space. There should be — must be — nuance in the way disabled characters are written.
• 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~!

[Back to Top]

Morphine, Ice Cream, and Chocolate (Sara Perry's End-of-Life Wishes) (65 KB)