Acting normal with CVI

Through my interactions with Dagbjört, I discovered the remarkable uniqueness of her story. As one of the few individuals able to articulate her visual experiences, she has provided valuable insights and knowledge to scientists studying Cerebral Visual Impairment (CVI). Recognizing that not everyone with CVI can express their perception of "normality," Dagbjört's ability to communicate her experiences offers a rare window into the condition. This makes her advocacy work all the more vital, as she strives to raise awareness and give a voice to those who are unable to speak for themselves.

It was through Dagbjört's friend, Elín Sigurðardóttir, that I became aware of this remarkable story and the importance of sharing it with the world. Elín, a passionate advocate for raising awareness about invisible conditions, reached out to me to highlight Dagbjört's experiences and the need for greater public understanding of Cerebral Visual Impairment (CVI). Having previously participated in my 2019 documentary, "Seeing the Unseen," which featured 17 women on the autism spectrum, Elín recognized the power of storytelling in fostering empathy and understanding.

Together, Elín, Dagbjört, and I embarked on a production journey to share this essential story. Both women are relentless fighters who refuse to let their challenges hinder their ambitions, and in doing so, they're paving the way for others facing similar obstacles. Through their unwavering determination and resilience, they're shedding light on a topic that might otherwise remain unknown and ensuring that the voices of those with CVI are heard.

For example - Did you know:
It is estimated that everyone with dementia, f.x. Alzheimer’s will develop CVI at some point. The question is not if, but when. This is a new discovery and not much about this is yet to be found online. This is being researched, along with other CVI - related things, for example in the Glasgow Caledonian University. Dagbjört and Elín visited the university recently and saw the primary world expert in CVI, dr. Gordon N. Dutton. He, along with other specialists are researching the dorsal stream ( where- system) in the brain, and it’s estimated that those with, for example dementia, have damage to that part of the brain.

It is well known that people with dementia and most other kinds of brain injury have trouble recognizing for example objects and/or faces. ,, What am I seeing, who am I seeing”. This type of visual processing difficulties is what CVI is. How does this impact people’s daily life? Studies? Relationships? How do others see them?
Steven Fry and Brad Pitt have both been diagnosed with this type of CVI, and have spoken publicly about their difficulties.

Why should we be interested, or find it important to get to know CVI and the affected individuals? And find it important that outdated disabling laws are changed for them?

Understanding Cerebral Visual Impairment (CVI) and the experiences of those living with it is crucial for several reasons. First, raising awareness about CVI can help remove barriers and foster inclusivity for individuals who are often marginalized due to their condition. By learning about the challenges they face, we can work together to create more accommodating environments that empower and enable those with CVI to participate fully in society.

Moreover, gaining insight into CVI sheds light on the need for updated legislation to protect the rights of affected individuals. Many current laws are outdated and fail to address the unique needs and challenges faced by those with CVI. Advocating for legal reform ensures that these individuals receive the support and accommodations necessary to lead fulfilling lives, free from discrimination and marginalization.

Ultimately, by investing time and resources in understanding CVI, we not only enrich the lives of those affected but also contribute to building a more compassionate and inclusive society.

Isn’t it always when something happens to ourselves - or someone we know, that we start to research things? You definitely know someone in this position, because the number of people getting diagnosed with CVI increases rapidly. In the meantime we are creating and designing school systems that discriminate against thousands of people to study.

Right now, scientists are diagnosing young athletes with CVI after getting a concussion when hit on the head or after a fall. The athletic world is little by little, acknowledging how a concussion can impact our vision. Same is to be said about people who have an accident, suffer a stroke, or physical violence. Do not forget that strokes can happen at any age.

Also, it’s becoming clear that many have received a diagnosis of autism spectrum disorder instead of CVI. It is hard to seperate the two, because the tools needed to diagnose are very different, but the symptoms can be almost the same. Dagbjört herself was for example diagnosed on the autism spectrum. But is she there? And if she is, was that diagnosis maybe just half of the whole picture?

Suddenly, Dagbjört is not one of a few people in the world with this type of visual impairment, there are millions of people who, despite their condition want to study, have a happy life and be a valid and happy member of society.

As our understanding of Cerebral Visual Impairment (CVI) continues to grow through scientific research and increased public awareness, our aim with this film is to present a comprehensive, 360° view of CVI. Rather than perpetuating a narrow, "tunnel vision" perspective, we hope to offer a nuanced, well-rounded portrayal that encompasses the diverse experiences of individuals living with CVI and the multifaceted impact it has on their lives.