From YAI: Voting is a fundamental right, but many Americans with disabilities continue to face barriers. James Argentino and Julio Mungia, who both have intellectual and developmental disabilities (I/DD), are breaking down those barriers. This November, they'll cast their votes, a big step toward truly being recognized as part of their communities.

The stereotype of a person with ADHD is a young hyperactive boy who can’t sit still in class, fidgeting and looking every which way. Now, while this image is correct from a strictly definitional perspective, it is so overly simplistic and shallow as to be functionally useless, failing to capture the broad strokes of the average lived experience with ADHD

As a psychiatrist, if I had a tailored genetic map of an individual I’m working with that would guide me to exactly the right medication, I would want it available for every patient I treat. Such is the promise of pharmacogenomic - genetic testing to guide prescribing of psychotropic medications.

In the disability community, we see many examples of the “guides” as Direct Support Professionals, counselors, teachers, coaches, therapists, clinicians, job coaches, parents, and case managers. In many ways, they serve as “training wheels,” the traditional set of stabilizing wheels attached to two wheelers that provide a needed measure of safety, security and confidence. It is indeed a glorious day when the wheels come off and the rider goes it alone. Letting go is not an exact science.

John Cronin, a young man with Down syndrome, has an eye condition called keratoconus. His path to receiving a diagnosis and the right treatment serves as an example of the challenges in treating people with a differing ability. I know his story because John is my youngest son, so let me share with you his journey and some of the lessons we’ve learned.

Dr. Rick Rader, Helen Journal Editor-in-Chief, writes: "Possessive eponyms suggest that someone owns a disease. The National Down Syndrome Society made a push to shift terminology from Down’s syndrome to Down syndrome, since the syndrome does not belong to anyone. If the name of a disease or syndrome should rightfully belong to anyone, it would be the patient, not the discoverer. Our colleagues in the United Kingdom refer to Trisomy 21 as “Down’s syndrome.”

On a sunny summer’s day in 1846, John was taking a stroll with his family in the fields around Devon. All of a sudden, dark clouds appeared and it started to pour down. The family started running and looked for shelter in a nearby farm. There, they were offered a cup of tea by the most odd-looking girl. John had never seen such a face. The young girl didn’t say a word, didn’t laugh and looked unhappy. John wandered whether she might have a disease. And if so, which disease would that be? And if anyone could do anything about it?

Teresa is a 38-year-old female with a diagnosis of moderate intellectual disability (ID). She rarely uses words to communicate but does use words like “Oww” to indicate pain, “tired,” sleep,” and “eat,” as well.   She has a history of high blood pressure and has taken daily medication for it for the last 3 years....She dropped a glass in the kitchen and sustained a cut to her left foot that required stitches to repair. A few days later, the wound appeared very red and began to drain a bit of pus. She was seen by her local nurse practitioner who started her on an antibiotic for the infection.

On August 9, 2024, 18 individuals from 10 states and Canada united on a self-healing journey.  We gathered together for a weekend retreat in a safe space that allowed us to explore and reflect on circumstances that bind us.  It was an occasion that elicited joy, healing, hope and peace. It was a time to unhinge, unwind, relax and rejuvenate the human spirit.  A calm nonjudgmental place where we connected, and opened our hearts without fear or negative repercussions.

EDITOR’S NOTE:  There are literally thousands of journals published around the world that relate to the disability community.  It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk!