The legal system fails families when it mistakes symptoms for crime
In one study, 42.4% of Huntington's patients had a criminal record
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It was just a glimpse, really. A few seconds on the road.
My wife, Jill, who is gene positive with Huntington’s disease, and I were driving home several months ago when we passed a car pulled over on the shoulder, its hazard lights blinking. A police officer stood beside a man on the grass, who had his arms out, walking heel-to-toe along an invisible line. Another officer watched nearby.
It was a field sobriety test, the evaluation law enforcement uses to determine whether a driver is impaired. Officers typically ask a person to walk a straight line, stand on one leg, and follow a moving finger with their eyes. The goal is to identify the physical and cognitive signs of impairment.
Jill and I rode in silence for a moment. Then she said, quietly, “A lot of people with neurological conditions wouldn’t be able to pass that. And that kind of test isn’t just given to people who are driving.”
She wasn’t wrong. The walk-and-turn test requires balance, coordination, and the ability to follow a two-step instruction simultaneously. The one-leg-stand requires being able to hold still. The eye test looks for involuntary movement. For someone living with Huntington’s disease, nearly every component of that evaluation describes a symptom, not a sign of guilt.
And none of those symptoms only show up behind the wheel. They show up when someone with Huntington’s is a passenger during a traffic stop, or when officers respond to a call about a “suspicious person” outside a store. Or when security pulls someone aside at a concert or an airport.
Any time an officer wonders if a person is “under the influence,” the same balance, movement, and eye tests can be administered, even if the person has never driven a mile that day.
The symptoms that look suspicious
Chorea moves the hands and limbs without permission. Balance erodes as the disease progresses. Speech can be slurred on a hard day. Processing rapid instructions from an authority figure under pressure is exactly the kind of cognitive demand that Huntington’s makes brutally difficult.
A person with Huntington’s could fail every part of that test completely sober and having done absolutely nothing wrong.
But the problem does not begin and end on the side of the road. It follows Huntington’s families into every kind of encounter with the legal system. Into the courtroom. Into the holding cell. Into the sentencing hearing. Into welfare checks at home. It’s calls from worried neighbors. It’s late-night visits when someone reports “disturbing behavior” or a “domestic disturbance” that is actually chorea and emotional dysregulation.
Erratic movement gets mistaken for aggression. Slow speech gets mistaken for defiance. An emotional outburst gets entered into a record as a behavioral problem. All the while, no one may have any idea that what they are encountering is part of the neurological distresses associated with Huntington’s.
Research published in Neurology Clinical Practice, a peer-reviewed clinical neurology journal for neurologists, found that 42.4% of Huntington’s patients had a criminal record documented in public databases, yet only 15.2% had that history recorded in their medical charts. The legal system is regularly encountering Huntington’s families without knowing it, and without the tools to respond appropriately.
A separate finding from the same research noted that 46.2% of Huntington’s patients had documented criminal behavior somewhere in their care history, most of it driven by the disease rather than any real intent to harm.
The numbers on undiagnosed Huntington’s make the picture even harder to sit with. Approximately 41,000 Americans are living with symptomatic Huntington’s, and more than 200,000 are at risk. A significant portion of people who carry the Huntington’s gene have never been diagnosed. That means there are people in courtrooms, in holding cells, in jails, and in police reports as pedestrians, passengers, patients, and neighbors whose behavior may stem from a disease many have never even heard of
Huntington’s suicide rates run as high as 12 times that of the general population, and incarceration, with its noise, its demands, and its almost complete lack of awareness about neurological issues, can be a genuinely life-threatening environment for someone whose disease has not even been identified yet.
These are not abstract statistics. They are people. They are families like mine.
After that drive home, I couldn’t stop thinking about what families are supposed to do when the system doesn’t see what they see. Who do you call? What do you say? What do you bring into that courtroom, or into that station lobby, or that emergency room waiting area that makes someone stop and understand that what they are looking at is not a criminal, but a person who is sick?
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
Leon Joffe
The reason Woodie Guthrie was considered drunk while performing towards the end of his career brfore he was permanently institutionalized.
Gerianne O Thorsness
Could people with conditions like Huntington’s, where symptoms can be misread, use a medical alert bracelet or a code for their ID CARDS?