They don't need to see how much fulfilment they have
Tobias Nielsen
10. JUNE 2024
With five fishing rods in the ground, Stefan settles into his camping chair. Although he was born with the hereditary eye disease retinitis pigmentosa, it is only recently that he has been prevented from living the life he wanted. The same goes for Mads, who had his second eye removed at the age of six due to eye cancer.
With lead and worms at the end of the line, Stefan can sit in his camping chair, looking out across Mariager Fjord, and wait for a bite from either a garfish or sea trout.
The 54-year-old Danish-German Stefan Kaminski has taken a seat next to his partner, Anette Thomsen. Sitting close to the water’s edge in their respective camping chairs, they overlook Mariager Fjord.
Having been out since 6 a.m. for the fourth day in a row, they wait for a bite, hoping it could be a sea trout swimming into the fjord in search of food.
As both Stefan and Anette are involuntary early retirees, they make the most of their time, the opportunity, and the good weather by spending plenty of time together, hoping to catch fish. If not, they can still enjoy nature.
»The wind on your skin, listen to the birds.«
Stefan says, referring to the sunny spring day and the small sparrows he can hear chirping around the fjord. There is plenty to appreciate, even if there are no fish on the hook yet.
When Stefan was 16, his uncle invited him on a fishing trip to Denmark. That trip marked the beginning of the second-biggest life change for him. Every May in the following years, he would take a spring trip across the border to fish for trout.
»After my first trip over the Vejle Fjord Bridge, I was speechless.«
Nature played its part in transforming Stefan from a West German into the Danish-German he is today.
»It brings a sense of calm, space to think, you become a completely different person. This is life. It doesn’t matter if you don’t catch anything. Of course, that’s the goal, but you still enjoy the nature and the weather.«
Since he started fishing in Mariager Fjord, Stefan has found seven or eight different spots he prefers. Each May, he rents a summer house near Mariager with a view over the fjord.
The Inevitable Deterioration in Stefan’s Eyes
»There’s something about the silence and tranquillity of the fjord.« But he cannot imagine staying in a summer house without being able to see it. If that were the case, he might as well stay at home in Randers, where he lives near the city centre. Ultimately, being able to enjoy nature with his sight means the most to him.
Stefan is aware that his vision is deteriorating, and there is a high chance he will lose it completely. However, doctors have told him that, for now, the negative progression has stalled. If his vision worsens, he will eventually go blind, a reality that takes effort to come to terms with.
We all know we will die, but no one knows when.
In addition to the retinal disease retinitis pigmentosa, Stefan also struggles daily with light sensitivity, contrast blindness, and cataracts, an unpleasant and unwanted combination that makes everyday life more difficult.
The waders, which are used daily throughout May, need to dry before Stefan and Anette put them on again in the evening.
FACTS
Retinitis pigmentosa exists in many variations, and individuals can develop this genetic disease at different ages. With normal vision, a person has a field of view of approximately 160 degrees. If the visual field is reduced to less than 10 degrees, it is referred to as tunnel vision or "telescope vision."
A person with tunnel vision may appear very clumsy to those around them. They might overlook even large obstacles, trip over furniture, walk into road signs, or knock over glasses on a table. However, they may still be able to read a newspaper or thread a needle because their central vision remains intact.
Source: Danish Association of the Blind
It was only recently that Stefan’s vision went from poor to very bad. He was informed that he was no longer allowed to drive, as his central field of vision had been reduced to just 20 degrees.
»About six years ago, when I was told I could no longer drive, my world fell apart.«
It was the worst thing that could have happened. Instead of being able to continue his life as before, he was fired from his job as a paver and placed on early retirement.
»It’s a shame, I loved my job and was even the county champion in paving.«
Although he is still capable of performing valuable work, the problem lies in the fact that he cannot do it as quickly. And speed is what matters to employers. If the job isn’t done fast enough, they can always find someone else who can do it quicker, and therefore cheaper.
Lack of Independence equals Greater Dependence
After a few hours by Mariager Fjord, as the morning hours transition into midday, the day's catch consists of a single sea trout and two garfish. Stefan hears a motorcycle revving up along Hadsundvej, a few hundred metres behind him.
»Go on, give it some gas,« he says, reminiscing about the days when he used to ride mopeds and motorcycles around Germany.
As his vision worsened, he became dependent on his elderly neighbour as a contact person. The neighbour helped him get around until, a year and a half ago, he met Anette.
She gladly helps her partner, driving him on trips and visiting places he had been before, revisiting them before his sight disappears completely. Together, they also enjoy fishing, with Anette having found the same passion for the surroundings and the adrenaline rush of getting a fish on the hook.
Despite his poor vision, Stefan has sharp central vision, which allows him to fillet the garfish and remove the heart without any issues. »Sometimes you can still feel the heart beating, but not with this one,« says Stefan.
Due to the intense sunlight, it is impossible for Stefan to keep his eyes open. Therefore, he has various specially made glasses that block and darken the harsh UV light.
Despite the gratitude Stefan feels for the help he receives and the everyday life he can enjoy with Anette, his greatest wish is to be independent and not have to rely on others.
»You don’t become a worse person by losing your sight, but you become less independent, and that can be difficult.«
For Stefan, it feels as though he is fighting for his independence. You lose some dignity when you can’t be self-sufficient, and Stefan is also frustrated by having to depend on others.
If Anette or his contact person is not nearby, it is a feeling of being trapped or locked in that fills him. Everything he used to be able to do himself, he now has to ask someone else to do. For Stefan, this means losing a lot of freedom and feeling how dependent you become on others.
The Best Feeling Is to Run Freely
The same feelings are shared by 21-year-old Mads Faurholt Laursen, who would prefer to live a life without dependence on others but would also struggle to manage daily life without the help of a guide.
»It just feels better to be independent,« he says. However, there are many situations where he cannot be. Being independent matters, and one of the places where he can experience it is in the parasport goalball.
As a baby, his parents noticed that his eyes didn’t follow their hand movements. At the age of six, his eye cancer had worsened to the point where it was necessary to remove his second eye, as the radiation treatment he received had damaged his optic nerve.
»I basically see darkness, but I can still imagine things,« Mads explains.
If you're in need of something, you have to take care of it yourself, and that's not always possible.
On the wall in Mads' room, he has a shelf with various small stones and crystals, which he collected many of when he was younger. »They feel nice to touch,« he says about them, without knowing what each one looks like.
Disability Does Not Define Who You Are
»I sometimes wonder if things would be different if I could still see,« says Mads.
Although his vision loss has influenced his life, he does not believe it defines his personality. If he had been able to see and play football with other children in primary school, his passion for reading, something he now enjoys immensely, might have been different. While life as a blind person has shaped many of his choices and interests, he does not see it as a central part of his identity.
»It has affected my life, but not my personality. My disability is not my personality,« explains Mads, who has plenty to keep him busy besides studying for his exams.
The worst thing for blind people and those with impaired vision is moving around in unfamiliar places. This makes Mads' mobility challenging. Even worse is roadwork, which can transform familiar streets into completely new and impossible obstacles to navigate.
Through goalball, Mads has made many acquaintances who understand him even better than his fellow students ever could.
Goalball Is Mads' Alternative to Football
Suddenly, he lifts his phone to his ear and starts swiping his finger over the area where the time is displayed, allowing the device to read it out loud. Using a screen reader, a feature available on most phones, he can have information and messages read aloud to him.
It’s almost time for him to pack his bag and catch the 2A bus from Trige, where he has lived since childhood. He takes the bus into the centre of Aarhus, where he trains for goalball every Monday, Thursday, and Saturday alongside other young people who like him also are blind or visually impaired.
Mads has been playing goalball for 13 years, competing in and winning several national tournaments, and representing Denmark at the European Championships in 2019 and 2021.
»It's an amazing sport, it gives you the chance to use your body instead of just sitting at home,« he says.
When one team throws the ball towards the goal, the players must defend and move in the direction of the incoming ball. Since the goals are no higher than one metre, players lie down to extend their reach as much as possible across the nine-metre-wide court.
»It's a lot of back and forth. You have to be able to communicate and talk to each other so you don’t block or get in each other’s way,« says Mads enthusiastically about the sport. He sees it as part of the challenge, having to communicate effectively despite not being able to see.
In goalball, the objective is to throw the ball using a bowling-like motion while the opposing team defends a nine-metre-wide goal line. The sport challenges players both physically and mentally, improving their motor skills, strength, and sense of orientation. It requires precise communication and teamwork, not only to pass the ball but also to defend the goal. Since players wear blackout masks and the 1.2 kg ball contains bells, they must rely on their hearing to track the direction of the throw.
»It's great to feel exhausted and burn off some energy while training,« says Mads.
The sport has not only given Mads a way to stay active but has also become a space where he can compete on equal terms with others who are either blind or visually impaired.
The Connections Mean A Lot
Beyond the friendships formed through the sport, many of whom are also part of the Danish Association of the Blind Youth, Mads has made connections that have turned into lifelong friendships.
Friends and acquaintances that Mads has made since childhood have come through Synscenter Refsnæs, which organises courses, trips, and summer camps specifically for the blind. For Mads, the most important part isn’t necessarily the trips and activities but the people he connects with, who can lead to valuable friendships.
Just like in goalball, Mads finds it comforting to spend time with others who share the same conditions and a similar daily life. These friendships have led to friends from all over the country.
It's nice to have someone your age who also understands you.
»I've never really felt lonely in general, only on certain days when I think, 'fuck, I just want to go out into the world and be able to see,'« says Mads, who has always had a strong network in both the blind community and among sighted people.
Mads’ social network has also been strengthened through his studies. He is in his first year of studying nanoscience at Aarhus University. Although being completely blind and starting university comes with challenges, it has been manageable.
»I probably have an advantage in that it’s a small programme with only 15–18 students per year.«
This makes it easier for him to build relationships.
Student Life Has Its Challenges
The social aspect can sometimes be difficult, especially in large groups and with many new people.
»It takes a lot of energy to get to know people and recognise their voices.«
At university, he relies on others approaching him, as he can't see if someone tries to make eye contact. That can be challenging, but once he gets to know people and they’re aware of the adjustments needed, it works out fine.
The friendships he has made have spread across the country, from Brønderslev and Aalborg to Zealand. He meets these friends about four times a year, which helps maintain strong social connections.
He is possibly facing having to change his course, as he is unable to get approval for an assistant for laboratory work in chemistry. Despite having filed a complaint and studying for his exams, there is a likelihood that, after the summer, he will need to switch to physics instead.
»Only now have I been stopped because of my sight in relation to the path I wanted to take.«
However, Mads is facing this with his head held high, because although the system is not designed for him to complete his current course, it should not be dismissed that there are other paths that could also be of interest.
For Mads, this could range from the chemical industry or research to possibly even work with physical calculations.
»I don't have a specific dream job, but I see opportunities.«
»I also want to participate in social activities as much as possible,« says Mads about student life. He can do this, among other things, through card games with tactile markings. This allows him to play on equal terms with his fellow students and not feel left out.
Despite the challenges and limitations of living without one of the most important senses, there is still joy and meaning in everyday life. Mads' involvement in goalball and his ability to be open and form strong friendships, despite living without sight, showcase the personality he has, as well as the positivity that emerges in the face of adversity.
Whether one loses their sight at the age of 6 or faces the possibility of losing it within the next decade, life is still full of meaning, joy, and interests. Whether they are found in the nature of Mariager Fjord with a fishing rod in hand or in a sports hall in the heart of Aarhus, it is up to one's own interests and the people around them who make life valuable. In such cases, challenges often become secondary, and life itself becomes the most important thing.
My Approach
For this project, I took an unconventional approach and tried to photograph both Mads’ and Stefan’s current vision. Through multiple detailed and comprehensive interviews, I aimed to understand and document how their vision was.
For Stefan, I placed my fingers in front of the lens to create a blurry effect in the corners, keeping the centre somewhat sharper. In some cases, I also made the image overexposed to reflect how his vision can be affected by light sensitivity.
For Mads, I asked him, while taking photos, what he imagined his surroundings looked like. Since Mads is completely blind, it of course didn't make sense to photograph darkness. Instead, I focused on the fact that he once had vision and still remembers colours and certain structures, which I tried to convey in the images.
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