A star in the new generation of disability rights activists, Erin Gilmer, died in July at 38. She was a force in the movement who fought for medical privacy, lower drug prices and a more compassionate healthcare system.
Gilmer, a lawyer, had rheumatoid arthritis, Type 1 diabetes, borderline personality disorder, and occipital neuralgia, which causes intensely painful headaches, according to The New York Times. Her illnesses left her unable to work or even get out of bed for long periods. Yet “she was a frequent consultant to hospitals, universities and pharmaceutical companies, bringing an extensive knowledge of health care policy and even more extensive firsthand experience as a patient,” the Times said in her obituary.
Every day, hundreds of disability activists fight for the civil rights of children and adults with sight, vision, learning, mental health and mobility disabilities. Do you know who they are in your community?
To find them, check with the local Independent Living Center, agencies such the Epilepsy Foundation, ARC, United Cerebral Palsy and the American Foundation for the Blind, and advocacy groups like Disabled American Veterans. You may just find your own Erin Gilmer.
In some places, city streets have become so crowded that people with vision and mobility problems are almost at a standstill.
During the pandemic, restaurants were allowed – even encouraged – to expand outside dining onto sidewalks. But wheelchair users and others who rely on scooters, canes, walkers and service animals can have a hard time squeezing by tables, chairs, customers, servers, bussers and sandwich boards.
Sometimes curb cuts are blocked by expanded dining, and where the handicapped parking used to be now sit dining “parklets” where drinks and meals are served.
City permits outline how much room is required around tables and the clearance for wheelchair access on sidewalks and ramps. But activists complain about lax enforcement.
Blocked sidewalks are the latest entry on a long list of customer grievances, which include restaurant door entrances, inadequate space between tables, and a lack of ADA-compliant bathrooms.
What’s happening in your downtown? Are people with disabilities having a harder time navigating the streets?
The FDA’s ban on devices used to administer electric shocks on people with developmental disabilities was overturned by the U.S. Court of Appeals for the D.C. Circuit.
In a 2-1 ruling, the court said the FDA violated federal law by interfering with how healthcare professionals practice medicine. The FDA had argued that the devices provide an “unreasonable and substantial risk of illness or injury.”
Currently, electrical stimulation devices are only to be used at the Judge Rotenberg Educational Center in Canton, Mass., which serves children and adults with developmental disabilities and those with behavioral and emotional problems, according to Disability Scoop.
“The facility has faced criticism for years from disability advocates who argue that the skin shocks amount to torture. But backers of the center insist that the electric shocks offer a necessary option for people with severe behaviors who have exhausted other treatments,” Disability Scoop reported.
What do experts and the disability community in your area think about the possible use of these devices on people with developmental disabilities and behavior issues?
The 2021 USA Paralympic team heads to Tokyo for the Summer Games knowing that medal winners will receive the same money as their Olympic counterparts for the first time ever.
The cost of competing is high for Paralympians. According to The Washington Post, a carbon-frame racing chair can cost $25,000, and that doesn’t include wheels and tires. The price of a prosthetic leg used in competition can be $20,000.
Three-time gold-winning Paralympic swimmer McKenzie Coan told the Post that equal pay “sends a message of equality and optimism to all with disabilities.”
The Paralympic Summer Games take place from Aug. 23 to Sept. 5, so there’s still time to track down competitors from your community for interviews about their challenging journey to Tokyo and this year’s financial recognition of their athletic abilities.
Americans living with disabilities are among the millions of Americans who stand to benefit from the $1.9 trillion American Rescue Plan recently signed by President Biden. The plan includes a number of measures that have not gotten widespread attention:
Resources for home- and community-based services and those who provide care;
Relief checks for adults with disabilities who are considered dependents for tax purposes;
Funding for services to school-age students in special education programs; and
Funding to support preschoolers with disabilities and infants and toddlers served under the Individuals with Disabilities Education Act.
But how and when those funds will be disbursed will vary by state, which makes this a good time to take this national story down to the local level. There are lots of questions about how the 2021 rescue bill will affect people with disabilities, their families and caretakers – questions that local reporters are best poised to answer.
COVID-19 may be creating a new group of people with disabilities.
The virus affects the lungs, can damage the heart, kidneys, brain, and blood vessels and can cause extreme fatigue, depression, and anxiety. In some people, symptoms linger, and we don’t yet know for how long.
The Americans with Disabilities Act defines disability as any condition that interferes with a major life activity (breathing, concentrating, communicating, seeing, or hearing) and bodily functions (the immune, circulatory and neurological systems), any of which could result from COVID.
“Simply having COVID wouldn’t quality someone for ADA accommodations, but many of the common after-effects would,” said Shirley Ryan of Chicago’s Ability Lab, which operates a COVID-19 rehab unit. And if the ADA does apply, that means a growing number of people could be eligible for protection against employment discrimination, among other protections.
Some are calling the situation unprecedented. Workers at higher risk of complications if they contract the virus, such as those with heart or lung disease, diabetes, and people on immune-suppressing drugs may have never disclosed their conditions at work before. If they contract the virus, would they be covered by the ADA?
A good question that reporters can begin to try to answer.
Approximately 6 million African Americans in the U.S. live with a disability of some kind. In fact, African Americans have the highest rate of disability of all segments of the population at a little over 20 percent. Yet, they get little attention from reporters or the public.
A collection of story ideas for journalists reporting on disability issues
Susan LoTempio is an author and lecturer on disability issues in the media. She was an editor at The Buffalo News, and wrote a popular “Diversity at Work” column for the Poynter Institute on media representations of disability. LoTempio is a NCDJ advisory board member. Read her full bio here.
Contact Susan on Twitter @slotempio or via email at slotempio@gmail.com.
As the media report on American nursing homes plagued by COVID-19, one important fact has been largely ignored or underplayed: Not all residents are elderly. Thousands are adults under the age of 65 who have physical and/or intellectual disabilities.
In late April, the Kaiser Family Foundation reported more than 10,000 reported deaths from COVID-19 in long-term care facilities in just the 23 states that publicly report this information. Missing was the number of residents under 65 with disabilities who were among the dead.
An underlying question is why people with disabilities are living in nursing homes, assisted living facilities and state hospitals. Before this health crisis, they faced waiting lists to get support in their own homes and struggled to access government benefits. As Time Magazine reported, “But amid a global pandemic, those challenges are heightened—and so far, lawmakers have mostly ignored their calls for help,” such as increasing Medicaid funding for at-home care.
“We have an institutional bias in this country,” Kelly Buckland, executive director of the National Council on Independent Living, told the Los Angeles Times. “The bias is that if you become disabled or old, you need to go someplace else. You need to go to an institution.”
A breeding ground for COVID-19 is the last place anyone wants to be, but why so many people with intellectual and physical disabilities have little or no choice in the matter is a critical story for this moment in history.
Although experts say that people with disabilities are not at greater risk to contract Covid-19 unless they have other high-risk health conditions or are 65 and older, the World Institute on Disability reports that many have critical needs that might be overlooked during this fast-evolving crisis.
Here are questions for reporters covering coronavirus:
Caregivers: What happens if a person’s personal care aide or caregiver is exposed to the virus and must be quarantined, disrupting the continuity of services? Can local agencies cover staffing needs? Will paid leave plans cover the person who fills in for a caregiver sick with the virus?
Education: Are districts that have moved classes to online providing assistive technology and access to students with physical and intellectual disabilities?
Medical care: Are local doctors and clinics using telehealth services and are private insurance and/or Medicaid paying for virtual appointments? (Medicare recently approved such coverage.)
Transportation: If public transportation is curtailed, what alternative services would be available to provide accessible transportation at a comparable cost?
Medication: Can people with disabilities receive 90-day supplies of prescribed medication whether they are on Medicaid or private insurance to avoid possible disruptions in supplies?
Food: If home delivery of groceries or prepared meals at community centers is disrupted, is there a plan to ensure access to food.
By Susan LoTempio, board member, National Center on Disability and Journalism
Contact Susan on Twitter @slotempio or via email at slotempio@gmail.com.
