SPORK! Exclusive: When A Blinded Person Sees: Charles Bonnet Syndrome

In 1759, retired magistrate Charles Lullin detailed to his secretary a series of visions he’d seen after he’d lost much of his eyesight: tales of handsome, vanishing men with regal cloaks who’d accompanied his granddaughters on a visit; black specks that transformed into pigeons; a handkerchief that drastically shrank or grew depending on where he looked. These images looked so much a part of the world around him that they seemed real, yet he knew they were not.

Magistrate Lullin’s description almost reads like the plot of a movie. In many films, ghosts and fairies and other fantastical things are completely real. Larger than life, these creatures interact with the humans who inhabit their realm: singing with them, dancing with them, even clasping their hands and guiding them through the night sky.

Though Lullin could have very well been a character in a fantastical movie, he actually had Charles Bonnet Syndrome, or CBS. Described initially in 1760 by Lullin’s grandson, the philosopher Charles Bonnet, CBS is defined by three hallmarks: vision loss, either partial or complete; hallucinations; and the marked realization that the hallucinations aren’t real.


Let’s dig a little deeper. In CBS, people hallucinate. They perceive a whole gamut of otherworldly or otherwise strange visuals, from cartoon illustrations to people the sizes of thumbs to dancing, colorful squares. Even though these images are crystal clear, there’s still a distinct disconnect from one’s perceptions of the corporeal world. The images remain simply that: images. They don’t feel or smell or sound like anything, even as they move and appear otherwise. Furthermore, they don’t usually interact with the patients themselves, instead carrying on as if no one else is there.

Put another way: instead of existing inside the world of a film, people with CBS are instead watching a silent production unfolding around them, a production of which they are not actually a part. Indeed, the fact that the hallucinations do not directly interact with the individuals themselves often distinguishes CBS from other disorders like schizophrenia. Patients with CBS are well aware that something isn’t quite right. They are lucid, articulate, intelligent; testing negative for a swath of possible psychiatric and neurological diagnoses.

In short, people with CBS know that the visions aren’t something to be afraid of—even if they have to reassure themselves sometimes. But many are afraid for an entirely different reason: they don’t want to be labeled as somehow not right in the head.

That’s a major reason why the actual prevalence of CBS isn’t well characterized. Aside from its encompassing description—CBS can last from a few moments to months on end; occur in both the young and the elderly, in people who’ve lost at least some of their sight to a variety of causes—CBS isn’t usually immediately reported, if at all. Due to this lack of self-reporting, researchers have predicted numbers from less than one to over 40 percent of all people with some form of vision loss as having CBS.

Uncertainty also plagues the causes of CBS, where vision loss is a mandatory but insufficient requirement. Charles Lullin, for instance, had cataracts that left him almost blind. Others have glaucoma. Still others suffer from tumors that compress the nerve leading to the eye.

The vision loss doesn’t have to come from a disease, either. One study simply looked at people who had been blindfolded for five days straight. Participants began hallucinating within an average of one day.

All of this isn’t meant to imply that all, or even most, people who have impaired vision will suffer from CBS. Rather, because CBS can arise from so many different causes, doctors often misdiagnose it as a more serious condition, like psychosis or schizophrenia or dementia, leading to unnecessary and/or incorrect treatment.

Although no set cure exists, CBS doesn’t often necessitate drug intake. The most common treatments involve making vision better through surgery or other means, and psychological counseling for those who don’t feel comfortable with the hallucinations.


As for the neurological mechanisms underlying the hallucinations of CBS: scientists aren’t too sure about those, either. The mechanisms are likely similar to what happens during phantom limb syndrome. Phantom limb syndrome usually occurs with amputees, such as war veterans who’ve had an arm or a leg cut off. A typical diagnosis goes like this: even if the arm or leg isn’t there anymore, it still feels like it’s there. Researchers attribute this phenomenon to the brain “filling in” sensations that are no longer present, because it expects much more sensation than it’s receiving.

In analogy, CBS is sometimes called the “phantom vision” syndrome. When someone who is used to seeing all of the world around them suddenly or gradually can’t see all of it anymore, their brain fills in the gaps in vision, which manifests itself as the many images associated with CBS.

Some folks who have CBS find it fascinating. Others, more than a tad distressing. For all of its mystifying attraction, however, there still remains a discordant note between awareness of CBS and proper diagnosis—almost 300 years after the initial report.


If you’d like to learn more about Charles Bonnet Syndrome, I’d recommend Oliver Sacks’s TED talk on the subject. You can view the TED talk here.


  • Draaisma, D. (2009). Disturbances of the mind. (B. Fasting, Trans.). New York, NY: Cambridge University Press. (Original work published 2006)
  • Greener, M. (2014). Charles Bonnet syndrome: an enigmatic neurological condition. Progress in Neurology and Psychiatry, 18(2), 6-8.
  • Jacob, A., Prasad, S., Bogglid, M., & Chandratre, S. (2004). Charles Bonnet syndrome—elderly people and visual hallucinations. BMJ, 328, 1552-1554.
  • Menon, G.J., Rahman, I., Menon, S. J., & Dutton, G. N. (2003). Complex visual hallucinations in the visually impaired: the Charles Bonnet syndrome. Survey of Ophthalmology, 48(1), 58-72.
  • Sacks, O. (2009). What hallucination reveals about our mind. Retrieved from https://www.ted.com/talks/oliver_sacks_what_hallucination_reveals_about_our_minds?language=en
  • Charles Bonnet syndrome: why am I having these visual hallucinations? Retrieved from http://www.visionaware.org/info/your-eye-condition/guide-to-eye-conditions/charles-bonnet-syndrome/125

SPORK! Exclusive: Directors Discussion - Lisa Wagner

SPORK! worked with Still Point Theatre Collective to help document their acting classes for adults with disabilities - In this video Founder & Artistic Director, Lisa Wagner discuss how Still Point got started and why bringing theatre to the differently able community is so important.

Still Point Theatre Collective is a Chicago based organization that offers free theatre classes to adults who are differently able. Founded by Lisa Wagner-Carollo in 1993, Still Point fosters the creativity of all participants. Rehearsals duel as a therapeutic session for the actors, while every live-performance help builds communication skills and expressive exchange.

For more information about the people or events in the video, go to: www.sporkability.org & www.stillpointtheatrecollective.org

SPORK! Exclusive: Pathways Summer Youth Program - Directors Discussion

SPORK! worked with Pathways to help document their dynamic Youth Program. In this video Youth Director, Bill Green discuss how Pathways offers blind and visually impaired youth a creative and practical outlet. 

As part of the Blind Service Association, Pathways is an Illinois based six-week summer program that is open to blind and visually impaired teenagers. Some of the offered outdoor activities range from triathlons, yoga and sailing, to visits to cultural sites and inclusive art tours.

For more information about the people or events in the video, go to: www.sporkability.org & www.blindserviceassociation.org

SPORK! Exclusive R J: The Vineyard

R+J: the Vineyard is a dynamic theatre interpretation of Romeo and Juliet. Held at Oracle Productions, R+J is Directed by Red Theatre Founder, Aaron Sawyer & Produced by Janette Bauer.
Inspired by Martha’s Vineyard, R+J introduces American Sign Language (ASL) and a mix cast of Deaf and Hearing actors to help bring to life Shakespeare’s classic tale. This inclusive production brought to Chicago a rarely seen, but much needed harmony of Sign Language and Theatre.
For more information about the people or performers in the video, go to: www.sporkability.org & www.redtheater.org/rj-in-asl

Dining with a Disability

Illustration by Victoria Borges

by Hollister Lindley

There are many kinds of disabilities. Some are invisible: Heart disease, cancer, multiple sclerosis and many other ailments may cause you to wonder why a fairly mobile person parks in the handicapped spot, but they’re deserving of the space all the same. Some disabilities are clearer: people who don’t walk well but can walk a little, or perhaps navigate a manual wheelchair. For some, like me, finding an accessible restaurant in Richmond can be a nightmare.


A few of RVA’s accessible restaurants:

Acacia Mid-town, Can Can, Fleming’s, Kuba Kuba Dos, Lemaire, Metzger Bar & Butchery, Pasture, Patina Bar And Grill, Rappahannock, The Roosevelt, Secco Wine Bar, Southbound, Tazza Kitchen (Short Pump)

Read the whole article via the Richmond Magazine: http://richmondmagazine.com/restaurants-in-richmond/food-news/dining-with-a-disability/

5 Ways to Make LGBT and Feminist Spaces More Disability Accessible

If you organize LGBT or feminist events in your local community, it can be hard to figure where to start when you want to make those spaces disability accessible. But it doesn’t have to be. Here are 5 ways to make sure every member of LGBT and feminist communities can participate:

1) Survey your community to find out what they need.

2) Talk to local colleges that have ASL programs.

3) Think beyond ramps.

4) Have greeters and guides.

5) Have a chill out room.

Read more at: http://www.shewired.com/identities/2016/1/11/5-ways-make-lgbt-and-feminist-spaces-more-disability-accessible

An interview with Maxx Quinn and SPORK! Founder Whitney Hill

Elisabet Bernard from Columbia College who interviews Maxx Quinn and SPORK! Founder, Whitney Hill about Mental Illness & Health. A great video about their experiences and the future of SPORK!.

SPORK! Exclusive: Disability Pride Open Mic with T. Gordon & Damian Ellis

Only at SPORK! New Video from the Chicago ADA25 Disability Pride Open Mic

T.Gordon & Damian Ellis talk about failure, acceptance with having autism and the Disability Pride Parade!

Held in the middle of downtown Chicago at the First United Methodist Church, performers & speakers come from all over Illinois to be a part of the show. This free event offered participants who are apart of the differently able community, a stage to showcase their cause and voice, while encouraging independent expression.

Check out more SPORK! Exclusive videos on our channel here.

In “Rule Breaking,” Disability Comes to the Stage as Theatre and Therapy

By Debra Weinstein

The complex relationship between brothers and sisters, clients and caregivers, and mothers and sons – all of whom are either living with disability or caring for a disabled person – will be played out on stage in Alec Silberblatt’s Rule Breaking: Disability as Performance, the latest production by the NYU Steinhardt Drama Therapy program.

Rule Breaking tells the story of four real-life couples, all of whom will be performing in the actual production. The play looks at their frustrations; the push-pull conflict inherent in needing protection and wanting autonomy, and the inequalities they face in their daily lives. These people are:

Delia Camden, a transgender woman who is also living with a developmental disability. She is fighting to obtain the medical and legal support to live as a woman and undergoes her transition with the help of her Program Administrator of almost 30 years, Craig Becker;
Henry Houghton, a 22 year-old man who is living on the autism spectrum disorder and his sister, actress, playwright and college student Lily Houghton;
• Drama therapist Hodermarska, and her 21-year-old son, Ethan Jones who is also a person living on the autism spectrum; and
• Drama therapist Cecelia Dintino and her 12 year old son, Bernardo Carlucci who is a person living with learning disabilities.

Read more about it on At a Glance


Updated Article Links

Good afternoon to all of our readers!

To better represent their site location, all article links on sporkability.org have been changed and therefore all old shared article links are no longer active.

Have no fear! All articles are available and can be found in the Writers Directory here: www.sporkability.org/writers-2.

Happy reading!