hidden disability

NCDJ Board Member Becky Curran Kekula Discusses Facing the Fear of Inclusivity

NCDJ board member Becky Curran Kekula speaks with a TMJ-4 reporter on “The Morning Blend” about inclusive ways to discuss disability.

By “The Morning Blend” show on TMJ-4 Milwaukee

NCDJ board member Becky Curran Kekula appeared on this morning talk show to discuss tips for treating people with disabilities fairly and respectfully. Part of the discussion focused on the fact that since 70% of disabilities are invisible, many people are nervous to either admit they have a disability, or to speak about someone who may have a disability that isn’t immediately apparent.

Also featured are some of Becky’s favorite tips for working remotely — a particularly relevant topic in the midst of the coronavirus pandemic.

Watch the full segment here: https://www.tmj4.com/shows/the-morning-blend/facing-the-fear-of-inclusivity

May articles highlight “Mental Health Month”

May is Mental Health Month and numerous organizations and celebrities are speaking up to raise awareness about the often taboo topic.

In a report for Cronkite News journalist Luke Wright focuses on famous athletes who describe their experiences with depression, panic attacks and suicide. The report features athletes from sports including basketball, football and track. The statistics mentioned in the story may shock from readers, for example Wright reports that, “Nearly 24 percent of 465 athletes at NCAA Division I private universities reported a “clinically relevant” level of depression, according to a 2016 study by researchers at Drexel and Kean universities. Female athletes had a higher prevalence rate: 28 percent vs. 18 percent.”

The science magazine “Nature” also features a collection of articles this month focused on mental health awareness in the science research industry. One article by Emily Sohn reports that graduate students are especially vulnerable to mental illness and includes tips from mental health experts on how to avoid it. In an opinion essay for “Nature” scientist Dave Reay describes his symptoms of depression as a “black dog,” similar to the one Winston Churchill made famous, that haunted his pursuit of a Ph.D.

In a story for NBC’s “Today Show” reporter Cynthia McFadden interviewed three teenagers with mental health disorders reacting positively to the social media campaign #MyYoungerSelf. The campaign features candid testimonies from sports and entertainment celebrities describing their experiences living with depression and anxiety.

Dancer says symptoms of OCD recede while he performs onstage

Steven Loch doesn’t know why his obsessive-compulsive disorder subsides while he’s dancing, but he’s grateful for the relief it provides from the “torture” of his symptoms. In a compelling interview with Brendan Kiley of The Seattle Times, Loch gives a candid description of the disturbing thoughts that cause his unpleasant behavior and prompted him to find treatment at psychiatric hospitals.

Kiley’s excellent article also features an explanation by Dr. Sam Zinner, a specialist in neurological development, of OCD’s medical origins.

“The human brain has a cluster of neurons called the basal ganglia. Put together, he explained, they’re the size of a walnut, and take in the deluge of cognitive, motor, memory, emotional and sensory information that floods through our brains when we, say, kick a soccer ball or watch out for poisonous snakes while walking through a swamp. The basal ganglia are supposed to filter out all the extraneous noise so we can focus on the task at hand. “In every picosecond of time,” Zinner said, “the basal ganglia have to decide what is relevant, what not to block out so you can survive.”

But the basal ganglia in brains with OCD — and related conditions, including Tourette syndrome and attention deficit hyperactivity disorder (ADHD) — are, in his words, “leaky filters.” Those leaks lead to information overload and behavior that, to the casual observer, might seem odd — like compulsively touching a magazine three times before picking it up, or hiding on a bathroom floor in costume during a ballet performance to avoid horrifying, intrusive thoughts.”

Hear Steve Loch describing his OCD symptoms in his own words and watch him dance in this captivating video by Seattle Times’ video editor Corinne Chin.

Dorm residents at Columbia clash with officials over assistance animals

Students at Columbia are seeking help from disability rights lawyers to convince university housing officials that multiple assistance animals are a medically required disability accommodation. Olivia Deloian of the Columbia Chronicle interviewed business major Lindsey Barrett who says her therapist prescribed dog companionship to treat symptoms of adjustment disorder. The problem is, Barrett already has an emotional support cat for her severe anxiety disorder, which means she needs new approval from Columbia to house the second animal. Deloian carefully describes her journalism process in contacting Columbia officials to request their side of the disagreement. With Barrett’s help, Deloian also provides a useful explanation of the distinction between emotional support animals and other service animals.

When Addiction, Opioids, and Disability Meet

When Addiction, Opioids, and Disability Meet

By Mary Wilson, AbleWell.org.

Contemplative man with city in background
Image via Unsplash

Living with a disability can have a serious impact on a person’s wellbeing, especially when that disability comes with chronic pain. The challenges of living with daily pain contribute to substance abuse rates that are two to four times higher in the disability community than the general population. While alcohol abuse and illicit drug use contribute to the high rate of substance abuse among people with disabilities, many develop problems related to prescribed narcotic medications. Often times, patients find themselves relying on alternative solutions for pain. Kratom for pain has become increasingly popular among senior citizens for the treatment of pain; it is similar to prescription pain medication in its ability to modulate how pain is felt by interacting with the body’s opioid receptors. It is significantly less habit forming than prescription pain medication, but still has a risk for dependence, writes Kratom.org.

According to a 2014 report published on Science Daily, more than 40 percent of all Social Security Disability Insurance recipients take opioid pain relievers, and more than 20 percent are chronic users of opioids. These numbers are concerning for a number of reasons. Not only does chronic use of opioids carry a heightened risk of addiction, but researchers are beginning to call into question whether the long-term use of opioids is actually appropriate or effective in the treatment of non-cancer chronic pain.

While some patients have success using long-term opioid therapy to manage pain associated with their disability, others find that as their tolerance to the drugs increases, they require ever-higher doses to reap the same benefit. While tolerance and dependence don’t equate to addiction, they do increase risk. And as the IASP Pain Research Forum points out, higher doses are associated with an increased risk of overdose and death. Even if overdose never enters the picture, death can still result from side effects of opioid use, such as the exacerbation of sleep-disordered breathing leading to cardiovascular death.

Nonetheless, opioids remain as one of the leading treatments for pain, and many people with disabilities rely on opioid pain relievers to keep their daily symptoms manageable. For chronic users, the focus then turns to responsible use to reduce the risk of addiction.

Responsible opioid use begins with doctors: Rather than freely prescribing opioid pain relievers or shunning them outright, doctors must take a balanced approach to these risk-laden drugs. In practical terms, that means not using opioids as a first line of defense against pain, instead directing patients toward alternative remedies like physical therapy and cognitive behavioral therapy, as well as non-opioid pharmacologic therapies, before turning to opioids. When opioids are the appropriate choice, the goal should be to maintain the lowest-effective dose rather than consistently increasing dosages. Physicians must also apply risk assessment tools, screen for contraindicated medications, and carefully monitor patients’ health status after initiating opioid therapy.

Patients, too, have a role to play in managing the risk of long-term opioid use. People who use opioids to treat disability-related pain must be careful to always follow their doctor’s instructions. Steps should be taken to prevent double-dosing and alcohol and illicit drugs should be abstained from while under opioid therapy. Physicians should be informed of all drugs a patient uses, including over-the-counter medications. Opioids should be locked up when not in use and unused medication discarded to prevent unauthorized access by someone other than the prescription holder. Finally, patients should employ nonpharmacologic self-management strategies, such as a healthy diet, adequate sleep, physical activity, and mental health management to improve their overall wellbeing.

While opioids are central to the discussion of addiction and disability, they aren’t the only substance putting the health of people with disabilities at risk. While self-medication with alcohol and illicit drugs can provide temporary relief from the physical and mental pains of disability, it’s a coping mechanism fraught with risks. Drugs and alcohol can interact dangerously with prescribed medications, contribute to poor overall health, and reduce a person’s ability to follow treatment and self-management regimens. Long-term use also contributes to the development of secondary conditions that worsen quality of life, such as depression, organ damage, gastrointestinal problems, and infectious diseases, among others.

Living with a disability is challenging enough without adding a substance abuse disorder into the mix. While advising people with disabilities to avoid alcohol and illicit drugs is relatively straightforward, addiction prevention is complicated when addictive substances are part of a prescribed treatment program. Adequate assessment, monitoring, and cooperation between doctors and patients is essential for preventing opioid use disorders in people with disabilities.

Mary Wilson is the abilities editor for Ability Wellness. She can be reached through AbleWell,org.

Medical schools heighten focus on undergraduate accessibility

The Association of American Medical Colleges (AAMC) published a report today outlining common barriers to medical education faced by med school students with disabilities. The research on this topic was prompted by the AAMC‘s desire to promote diversity among its student, faculty and professional membership, and facilitate the standardization of accommodations. The report suggests that, although more medical school students are self-identifying as having disabilities, a culture of competition still promotes stigma around disability. Philadelphia public radio’s (WHYY) Elana Gordon wrote a short article summarizing the AAMC report and the responses it prompted from disability rights advocates.

Labeling mass shooters as “sickos” perpetuates mental health stigmas

The National Alliance on Mental Illness (NAMI) released a statement condemning the imprecise language recently used by public figures to discuss the connection between mental health and mass shootings. President Trump and Dana Loesch, a spokesperson for the National Rifle Association, used words including “sicko,” “nuts” and “crazy person” to describe the diagnoses of mass shooter Nikolas Cruz. The NAMI statement criticizes such comments as reinforcing “inaccurate and negative stereotypes” that “create barriers to having real conversations about how to improve the mental health services that lead to recovery and participation in American society by people experiencing mental health conditions.” CNN.com interviewed several mental health experts who also suggested that mental illness is not a reliable condition for predicting violent behavior. Click here to read NAMI’s statement and click here to read CNN’s article.

Massachusetts urges hospitals to better prepare for dementia patients

Hospitals frighten many patients but they can be especially confusing and traumatic for people with dementia. According to a story for the Boston Globe by Felice J. Freyer, hospitals in Massachusetts are making an effort to better accommodate patients with memory loss. Freyer reports that the loud, high-tech hospital environment is disorienting to patients with “fragile minds,” and staff frequently rely on sedatives to calm confused patients. Freyer interviewed family caregivers, Alzheimer’s advocacy groups and hospital executives to learn more about the problem and how hospitals are making improvements.

Tampa Bay Times publishes 10yr update on Pulitzer-winning “Girl in the Window”

Danielle was almost 7 years old when detectives removed her from a filthy house in Plant City, Florida. She was so malnourished and neglected that doctors predicted she would be disabled for the rest of her life. The Tampa Bay Times’s Lane DeGregory won the 2009  Pulitzer Prize for her profile of Dani and her adoptive family. Yesterday, Nov 29, DeGregoy published a fascinating update about Dani’s condition. Check out DeGregory’s latest report by clicking HERE, and to read the original award-winning story click HERE.

Art workshop offers vets with PTSD an outlet for peace and creativity

Navy veteran Scott Beaty hosts an art workshop every Friday night and Saturday morning at Fontbonne University in St. Louis, Missouri. Many of the veterans who attend experience symptoms of PTSD and appreciate the opportunity to express their feelings in a creative medium. The class is sponsored by Vision for Vets and the coordinators are hoping to expand to more locations. “Everybody here has some kind of disability, but we don’t give a damn,” Beaty said. “It doesn’t matter. We’re family. We’re all in this together. We help each other with our issues.”

Check out this article in the local Illinois paper Belleville News-Democrat to learn more.