EXTRAORDINARY CHILD
Guðbjörg Lára Viðarsdóttir, Titanic, 2001
Öskjuhlíðarskóli
Lára Lilja Gunnarsdóttir, Dreamhouse, 2005
Öskjuhlíðarskóli
Elvar Már Andrason, 2006
Öskjuhlíðarskóli
Björn Friðrik Gylfason, 2004
Safamýrarskóli
Guðbjörg Lára Viðarsdóttir, 2004
Öskjuhlíðarskóli
Lára Lilja Gunnarsdóttir, 2005
Safamýrarskóli
INTRODUCTION

The National Gallery of Photography operates under the auspices of the National Museum of Iceland to preserve one of the largest collections of Icelandic photographs in the country. Contemporary photography plays an important role in the Museum’s work. Photographs by Mary Ellen Mark, one of the most highly-regarded photographers of our time, of pupils in Öskjuhlíðarskóli school, captured the attention of the National Museum. The photographs, which appeared in Iceland’s daily Morgunblaðið in 2005, portray the lives of disabled children in Iceland. Mary Ellen Mark is known for taking photographs that reflect reality. Amongst her best-known projects are photographs of the lives of homeless youths in Seattle, the work performed at Mother Teresa’s charity mission in Calcutta, brothels in Bombay, and the Indian Circus. In the fall of 2006 The National Museum arranged to collaborate with Mary Ellen Mark, to photograph the lives of disabled children in Iceland. The result of this is the exhibition Extraordinary Child and the accompanying catalogue. At the same time as Mary Ellen Mark was photographing, her husband, renowned documentary filmmaker Martin Bell, made a film about the life of Alexander Viðar Pálsson, a pupil at Öskjuhlíðarskóli.  As a matter of fact it is Alexander’s strong personality that attracted us all to this project. Martin Bell’s film is of course called Alexander.

An important part of the National Museum’s work is to offer exhibitions that move the spectator and cause him or her to reflect on the diversity of human experience and our circumstances in the present, as well as in the past.

Mary Ellen Mark’s photographs in the exhibition Extraordinary Child were taken at Öskjuhlíðarskóli and Safamýrarskóli schools and the Lyngás centre for the disabled, in the fall and winter of 2006-2007. Parents, teachers and administrators, as well as the children themselves, were all wonderfully cooperative. The exhibition also sheds light on the children’s school environment through the photographs of Ívar Brynjólfsson, a photographer for the National Museum. Selected artwork by the school’s pupils is also on display, chosen by Ingibjörg Jóhannsdóttir, principal of the Reykjavík School of Visual Art. Journalist Einar Falur Ingólfsson writes an essay about the lives of the children and the work of photographer Mary Ellen Mark.  Mary Ellen Mark also has written an introduction to this catalogue.

This exhibition and film allow us to face these children and their circumstances with the help of the lens. At the same time we are also directing our gaze at our own perceptions and feelings. In this exhibition we see the reality of disabled children in our contemporary society. We sense how extraordinary these children, like all children, are. 

The National Museum of Iceland would like to extend sincere thanks for the collaboration to the children, their parents, teachers and school administrators, as well as the artists.

Without all of them this exhibition would not have become a reality. Thanks are also due to those who provided financial support, primarily the Cultural Fund of Glitnir bank, as well as others who were involved in the preparation.

Margrét Hallgrímsdóttir

General Director



EVERYONE MUST BLOSSOM IN THE SCHOOL

Einer Falur Ingolfsson

Mary Ellen Mark is finishing her last day of photographing at the two special education schools for disabled children in Reykjavík, Öskjuhlíðarskóli and Safamýrarskóli. She worked at Lyngás as well, a care centre for severely disabled youngsters. “Of course it is horrible being disabled,” she says. ”I don’t want to make it look like it is easy for these children. On the other hand the children are provided with a very special and warm environment here in Iceland, within an educational system that respects the children, where they get to be themselves. Every  effort is  made to challenge them, and to help them learn as much as possible.” 

Now Mark will start to select the photographs she considers to be the strongest, taken in the six weeks she has spent with the children and their teachers. “I wish I was starting the project now,” she says with a sigh. “When you immerse yourself in a fascinating project you gradually start to know the system. You get to know the children and the caretakers and slowly they start to trust you. Never underestimate these kids one bit. They may be disabled, mentally and physically, but perhaps they sense and understand things at a deeper level than non-disabled children. If people don’t like you and don’t trust you, you are not going to get great pictures.”

Mark began photographing in the schools on the first day she was invited there. She feels strongly that from the outset people should know what she is doing. “I will not be sneaky or play games with the children. It is important to take out my camera immediately,” she says. She has in the past created remarkable photo series of people from around the world, people who often live in special or unique circumstances, on the fringes of society, or hidden from view in some way. Like the lives of the children in Safamýrarskóli and Öskjuhlíðarskóli.

In many of her best-known projects Mary Ellen Mark has focused on groups of people who need special care or assistance. One of these projects is Ward 81, a book of photographs taken in a locked psychiatric ward at the Oregon State Hospital in 1976. Ward 81 housed seriously mentally ill women. Mark was given permission to spend 36 days in the ward. In 1979 she traveled to India for LIFE magazine to document Mother Teresa’s Missions of Charity. On completing the assignment, Mark felt a need to present a more comprehensive story of the missions, so in 1981 she returned to Calcutta and spent two months photographing Mother Teresa and those who received her assistance. The photographs were published as a book in 1985. In 1983 Mark traveled to Seattle to photograph street children for LIFE magazine. At that time, Seattle was considered the “most livable city in the US.” There she earned the trust of a group of street children and spent three weeks photographing them. She completed the photo essay for LIFE but returned later that year with her husband, filmmaker Martin Bell, to continue working with the teenagers for two months. The outcome was the book Streetwise, as well as a film by the same name that was nominated for an Academy Award in the Best Feature Documentary category. More large-scale projects from Mary Ellen Mark’s career include A Cry for Help, a book focusing on the homeless in the US, and Falkland Road, an intimate look into the daily life of prostitutes working in the Falkland Road area in Bombay, India.

Mary Ellen Mark has visited Iceland several times in recent years, and expressed an interest in learning about the circumstances of the disabled children there. In autumn 2005 she spent ten days working in Iceland. She asked to visit Öskjuhlíðarskóli, a school for disabled children in Reykjavik. School was just starting after the summer holidays, yet the principal was open to the idea and sent the request to the students’ parents for consideration. Two days before Mark was to return to New York she was invited to visit the school the following morning to photograph.

“This school is wonderful,” she remarked after the visit. “I can feel that the children are allowed to be themselves. It is obvious that the people who work here love them.”

“I have visited other institutions for the disabled where the administration is ashamed of the people they care for and would prefer that you do not meet them. In Öskjuhlíðarskóli the children are respected for who they are, everyone is filled with love and warmth and that is why the atmosphere is so uplifting,” she said. Over the years, Mark has often photographed people who are struggling with handicaps. “These children are unpretentious and honest. That type of purity has always attracted me. The disabled certainly lead more difficult lives, but their lives can also be full of action and humor. These are just children, who happen to have handicaps that other children do not have. I would like to come back and spend more time at the school.”



IT’S AMAZING WHAT THE TEACHERS ACCOMPLISH

In the autumn of 2006 Öskjuhlíðarskóli was made up of some 100 students, aged six to sixteen, in grades one through ten. The students are from Reykjavík and the neighboring municipalities and have various handicaps and disabilities; some are in wheelchairs, a substantial number are autistic, some have Down syndrome. Safamýrarskóli, Reykjavík’s other special school for the disabled, is three and a half kilometers to the east. It has been open since 1982 and is situated next to the Lyngás care centre. Safamýrarskóli is an elementary school and in 2006 there were seventeen severely disabled students. Some of them attend Lyngás during after-school hours, while others are in day-care in Safamýrarskóli.

The students in Safamýrarskóli are substantially more disabled than the children at Öskjuhlíðarskóli. Fourteen students are completely bound to wheelchairs. Many have extreme difficulties expressing themselves or mastering simple things and some must be fed through a tube. The disabilities of the Öskjuhlíðarskóli students range from hyperactivity and developmental problems, to acute physical disabilities and problems with communication. The school is defined as being for students with multiple disabilities, yet the levels of ability vary considerably. The principals of both schools point out that the students attend the special education schools as a result of their parents’ decision. A basic educational policy in Iceland calls for “a school without differentiation” and the Elementary School Act states that an educational institution should meet the needs of all students, irrespective of their abilities. Children with disabilities are assigned a support assistant if they attend a regular school. Some schools have special education departments, for example autistic children are integrated with regular classes several times a week. In recent years, parents have increasingly chosen to enroll their disabled children in regular schools rather than special education schools. In regular schools, disabled children have more interaction with non-disabled children. But, in the special education schools there is a greater pool of knowledge when it comes to teaching children with severe learning disabilities. The principals of the special education schools point out that they are an important option for parents of children with special needs. Those parents I spoke with agreed. 

On that day in September 2005, when Mary Ellen Mark visited Öskjuhlíðarskóli, she made an effort to really get to know the workings of the school. One of the things she did was travel on the bus when students were being driven to a swimming lesson. She saw how the students enjoyed the water and how the teachers used swimming to strengthen and stimulate the children. Mark got into the pool to photograph them and formed a special connection with one of the boys, Alexander Viðar Pálsson. Alexander was ten years old and clearly loved being in the water.  He smiled at Mark a lot and she was drawn to his joyfulness and bravery.

Alexander is central to the photo essay that appeared in Morgunblaðið after Mark’s first visit to Öskjuhlíðarskóli. Alexander’s parents, Steinunn Sigurd and Páll Hjaltason, say that he is a happy boy who enjoys life. Alexander is severely disabled and unable to speak, but according to his parents has made considerable progress at the school.

“First, Alexander was at a wonderful pre-school with other disabled children. We were anxious when the time came for him to start school, and considered sending him to a regular school,” say Steinunn and Páll. “Then we went and looked at Öskjuhlíðarskóli. We had been told that schools like that attracted both caring and skilled employees, and that is certainly the case. We have nothing but admiration for the teachers and the work carried out at the school.”

Like other parents of disabled children in the two schools, Steinunn and Páll are worried about the recent talk of whether the schools should be closed. “It’s a nice idea to have everyone in the same school environment, but it’s just not realistic,” Páll says. “Some children simply cannot cope with the traditional education system. Nobody knows the cause of Alexander’s disability or whether he will improve - Alexander is writing his own story as he goes along. But he is continually surprising us by doing something new. Still, he has to learn everything from scratch, and to do that he needs a completely protected environment.”

Páll and Steinunn both agree that Öskjuhlíðarskóli is great for their son. “Alexander is so happy there. The school needs to be supported and housed in better facilities to keep their remarkable work going. Despite the conditions it’s amazing what the teachers accomplish.”



IT’S A HARD LIFE

Mary Ellen Mark was fascinated by what she saw at Öskjuhlíðarskóli and wanted to return to spend more time taking pictures and getting to know the lives of these children. Mark is not a woman who lets her dreams and ideas vanish into thin air. For ten years she waited to be able to win the trust of the women on Bombay’s Falkland Road. She did not have to wait that long for an extended stay with the disabled children in Iceland. Mark discussed her ideas with Steinunn Sigurðardóttir, and Steinunn told Margrét Hallgrímsdóttir, General Director of the National Museum of Iceland about them. In autumn 2006 Mark returned to Iceland at the invitation of the National Museum, and with permission from parents and school administrators to photograph life inside both schools for the disabled, as well as Lyngás. Martin Bell, Mark’s husband, accompanied her to work on a film, focusing primarily on Alexander Viðar Pálsson, his family, friends and school-life.

The National Gallery of Photography, which preserves one of the largest collections of photographs in Iceland, operates under the auspices of the National Museum of Iceland. Contemporary photography by both Icelandic and foreign photographers is a growing component of the Museum’s collections. It was therefore invaluable to have Mary Ellen Mark, one of the most renowned photographers of our age, create an exhibition for the National Museum, says Margrét Hallgrímsdóttir. Mary Ellen is known for photographs in which she looks at her subjects without prejudice, facing their realities with compassion and respect. “The National Museum of Iceland strives to portray things in such a way as to facilitate broad-mindedness and respect,” says Margrét. “Consequently it is very important for the museum to present exhibitions that shed light on the diverse aspects of our history and society, both past and present. With this exhibition the museum seeks to provide insight into the lives of disabled children in Iceland. In this project we were guided by the principles of having a true perspective, of respect and human compassion that all children deserve.”

“Initially, we were able to spend almost a month on the project,” says Mary Ellen Mark. “Later that winter we returned on two occasions and worked for a week. But I never feel there is enough time when working on a big project.”

Martin Bell says that most of us have a fear of disabled children and tend to look away. “Because of the extraordinary access given in the making of this film by Steinunn, Páll, Alexander and the schools it allows people to begin to understand the rich and complex lives the families of disabled children face. I hope this intimate film will help clarify the often confused and conflicted feelings we sometimes have towards these children allowing us in the end to simply see the child.”

“The care of disabled children is unique here,” says Mary Ellen. “The children are treated with respect, yet are not overprotected. The kids gain a sense of freedom and independence. The best thing would be to have one school that caters to all disabilities – then parents wouldn’t have to face the difficult task of choosing between the two.”



NOT CHOOSING FOR LIFE


Eiríkur Þorláksson and Margrét Þorkelsdóttir are the parents of Alma, a 15-year old girl in 10th grade in Öskjuhlíðarskóli. Alma is autistic with a low level of development. She frequently had epileptic seizures before she was put on a special diet several years ago. The seizures have disappeared for the most part, yet Alma needs observation and care 24 hours a day. Her father has served on the board of the Icelandic Autistic Society and her mother works at Safamýrarskóli. Alma has been in both schools.

“She started in Safamýrarskóli,” say Eiríkur and Margrét. “It was difficult deciding in which school to enroll her. We looked at both. We immediately liked the atmosphere in Safamýrarskóli, but our decision to enroll her there didn’t mean that she would have to stay there for the duration of her education. There was always the option of transferring her to the higher level of Öskjuhlíðarskóli. We preferred this option instead of having her start at a higher level and maybe later having to move her to Safamýrarskóli.

“It’s a question of creating a comfortable and positive atmosphere for the children, where they can develop.”

When Alma was to go into 6th grade, Eiríkur and Margrét moved her to Öskjuhlíðarskóli. “She was the only child to change schools at that time. The other children in Safamýrarskóli didn’t have the mobility or verbal skills that she had. Alma had become exceptional there. In Öskjuhlíðarskóli she has stronger role models. The children in the class made her feel welcome, and protected her.”

Hildur Reynisdóttir is the single mother of Helga Davíðsdóttir, a nine-year-old in grade four in Öskjuhlíðarskóli. Hildur’s experience has in many ways been different from that of Alma’s parents. Helga spent the first three years of school in a regular primary school, and has now spent one year in Öskjuhlíðarskóli.

“She’s very hyperactive,” says Hildur about her daughter, who also has developmental disorders. In some ways she is one to three years behind her peers in her mental development. But Helga is a happy child and is as lithe as a cat – in fact she regularly plays with great skill at being various animals, and displays great talent as a mime.

Hildur and her ex-husband adopted Helga from Romania. “She was 19 months old when we got her, and she was both mentally and physically malnourished. She could barely sit up. She was only able to receive liquid nourishment. She had sores all over. She’d lived in a crib in an orphanage in Romania where there were 90 children and three women to look after them.”

Hildur realized immediately that Helga was not healthy, and took maternity leave for a year to look after her. Helga went to both occupational and physical therapists, as well as a chiropractor. When Helga learned to walk her limbs were askew and she lacked motor coordination.

“You wouldn’t believe that this agile little girl is the same child,” says Hildur. “She was hyperactive from the start. Helga started pre-school at the age of two, with a support assistant, and attended regular school at the age of six, also with support. After school she took gymnastics for three years, thanks to the teacher’s resolve in sticking it out and believing in her. She’d be all over the place and received a scolding if she didn’t behave, and if she continued they’d call me. For her that was the worst thing,” says Hildur and laughs.

At the age of six Helga entered 1st grade with a support assistant by her side. Hildur says she initially took a big leap in development. “It varies so greatly in the regular school system how these individuals are viewed. If my daughter were not hyperactive she would probably still be in a regular school. Yet socially and educationally she lagged further and further behind her schoolmates, which is often what happens to individuals with developmental disabilities. We were advised to apply for a place in Öskjuhlíðarskóli, and it took some time for us to come to terms with that. But I have worked with disabled people and I know that regardless of how smart they are, if the social side is not OK, they won’t make it out in the real world.”

She says that when Helga began attending Öskjuhlíðarskóli she took a large leap forward. She has also become stronger socially by attending the Vesturhlíð day-care after school, where the children are more involved in play. The sort of behavior that comes with hyperactivity is expected there, and is not considered abnormal like in the regular school. The teachers have worked systematically on improving her social skills and she is ahead of her classmates when it comes to learning. 

“Perhaps the students are too mixed in terms of development to be in one group. Helga’s teachers say that she’s too far ahead in terms of ability – but then where does she belong? They don’t know, and neither do I. But for me the most important thing is for Helga to be content, be happy in the future and to be self-supporting as an adult.”



A VAST AMOUNT OF KNOWLEDGE

Dagný Annasdóttir is the newly appointed principal of Öskjuhlíðarskóli. She says that the students differ greatly in terms of abilities. “There are students here who have a very hard time communicating, who can perhaps only make themselves understood through sounds, gestures or symbols, and there are students who have full command of Icelandic and may even be able to communicate in English and Danish. There are students here who are remarkable athletes – who have won medals in the Special Olympics – and there are individuals who can barely move. There are also students with severe mental problems and do not always follow the same path as the other students.”

Dagný says that dealing with the disabilities of the children calls for a great deal of cooperation within the school; among the staff and parents, as well as the service agents outside the school. There are often seven to ten employees involved with every class, which is made up of a similar number of students. The school also acts as an advisor to all elementary schools in the country. “People from all over Iceland contact us for educational materials and consultation regarding their students. Over the past few decades a vast amount of knowledge, educational materials and skills have accumulated, and it is important to make those available to others.”

The curriculum at Öskjuhlíðarskóli is based on the National Curriculum Guide for Elementary Schools and adapted to the needs of each individual student. At the beginning of each school year a program is created for each student in each subject, whether it be arts or practical subjects like Icelandic or mathematics, mobility or social development. A program is also made up for the class as a whole, for those things that can be done together. The staff of both Öskjuhlíðarskóli and Safamýrarskóli incorporates many individuals: elementary and upper secondary school teachers, special education teachers, developmental therapists, speech therapists and pre-school teachers. An effort is constantly being made to stimulate the children in as many ways as possible.

“There are many teaching methods,” says Dagný. “For instance there are ways to teach the children a single letter of the alphabet. We can look at it, sew it, shape it in clay, we can even dance it. Or sing it. It often takes a longer time to teach things than in other schools, but it is rewarding when we are successful.”

There is a strong emphasis on exercise, like physical education and swimming. “Swimming is very good for the children. The movement, the exercise, the relaxation,” says Dagný. “However we definitely need a swimming pool here at the school. There are blueprints for a new wing, with a swimming pool, gymnasium and auditorium. The way things are now it takes a lot of money and effort to get everyone dressed, into a school bus and to a pool somewhere else.”

Things like art and music are also considered very important. “Most of the children enjoy singing. Even children who normally communicate very little blossom during singing lessons. They may use only a few sounds for speaking, but will know entire song lyrics by heart. It’s incredible. This gives us an opportunity to train vocabulary, sentence construction and ideas. They are then able to express themselves through the singing which makes them more confident and ultimately happier.”

Every seat is taken in Öskjuhlíðarskóli, and recently the administration has had to turn down applicants as a result. “Over the last few years new students have joined nearly all of the classes, even 10th grade. Parents enroll their children for the social aspect in particular. The regular schools tend to meet their educational needs, but the children have problems adjusting socially and become isolated.

“It is good for parents to have a choice. If they choose to enroll their children in a regular school they are not making a permanent decision, the children can always return to Öskjuhlíðarskóli, just as they can start here and then move to a regular school. I think making this choice initially is tremendously difficult – as it should be. Everything has its pros and cons. Some children draw strength from an environment in which others are stronger than they in certain areas. Others become the underdogs, which in turn can adversely affect their self-image and self-esteem.”

Dagný knows that it is difficult for parents to choose between Öskjuhlíðarskóli and the smaller Safamýrarskóli where students’ abilities are generally much lower. She says the choice would undoubtedly be easier if the two schools were merged. “If the schools were combined the children who are now in Safamýrarskóli would probably be placed in a special education department. There is a vast amount of specialized knowledge in Safamýrarskóli, and much more specialization than here.”



PERPETUAL SURPRISES

Erla Gunnarsdóttir, principal of Safamýrarskóli, has worked at the school since 1982. She was previously employed at Lyngás, which is in an adjacent building. Erla says that it is crucial for everyone in the school to thrive, regardless of their level of disability. Success is to a great extent dependent on the internal workings of the school, and the facilities. She says that it is often difficult to work in the school premises, which are not designed for the physically handicapped.

“When we started there was one student in a wheelchair. Now only three of the seventeen students are able to walk,” says Erla. “We have had to make substantial alterations to the building to adapt it to the needs of the students. We have an excellent swimming pool and a gymnasium here, and that has helped us to stick it out. The students need a lot of space, even if there aren’t that many of them. They need to be able to move around freely and there needs to be space for the assistive technology – wheelchairs take space. The hallways are narrow and the dark basement classrooms are depressing, undignified and uninspiring. But we try to keep momentum and to work as well as we can. Everyone in the school must blossom.”

According to Erla the average student is very disabled with very little ability to move, and that most are also severely disabled mentally. “Still, you never really know where they are in terms of their intellectual and cognitive abilities,” she adds. “The children can be very strong in some areas and weaker in others, but we always act on the assumption that they understand.”

The children’s disabilities call for constant attention to each student. It is considered important for them to bond with more than one teacher, to have many trusted people in their surroundings, and for as many staff members as possible to be aware of the special needs of each child.

The children here need so much assistance in their daily lives, but they are here to get an education like students in other schools,” Erla says. “We try to integrate their specialized care with other lessons.  Helping them with the day-to-day things like eating and using the toilet can also be a chance to teach them particular skills or ways of communicating.”

To a great extent, the work in Safamýrarskóli involves finding different ways to stimulate the students, for example through music, swimming, or creative work.

“They are all different and have different abilities. What stimulates one child can have a completely opposite effect on another,” says Erla. “We have to constantly reevaluate the children so we can base our work on their needs. It is wonderful to have a swimming pool here in the building, since most of the children thrive in the water. The ones who are physically handicapped gain a certain freedom in the water, and all of them feel content there. We work on their mobility, as well as on all types of interaction and communication.”

“We are constantly working to maintain the student’s mobility, and ideally to improve it. That is very important. Just changing their physical position gives them a sense of well-being and by sensing their whole body they increase their physical awareness. Exercise improves their circulation and digestion.”

“During adolescence, when children grow taller and heavier and their body ratio changes, there is a danger of them losing the ability to walk and end up in a wheelchair. We make an effort to let them move as much as possible on their own.”

Music is often a good way to reach the students. Some of them hear better than they see; others do not hear well but sense rhythm and vibrations.

“Some of the children have very definite musical tastes, and their tastes vary widely. They make it very clear if they are displeased, or if there is something they like. One of the girls becomes very unhappy if we play what she feels are cheesy, sentimental songs,” says Erla and laughs. “We use rhythm and music a lot. We also begin each day by coming together in the auditorium and singing. We feel that is a good way to start the day. We see the children becoming familiar with some of the music and some of them make particular movements that are specific to certain songs.

“We also use art to stimulate the children. The art teacher has developed very unique working methods. The children work with many different materials, and the teacher knows how to be patient while also providing the help they need. The children do the work themselves, and it can take a long time. They are constantly surprising us. Not a lot of educational materials exist for the children, so the teachers have to be resourceful and creative. The people here are always thinking of new and inventive things that can be used in teaching and caring for the children.”

Erla says that with added developments in medicine, fewer children die despite considerable handicaps. “The parents of most of the children here learned that their child was severely disabled soon after birth. Parents should be able to choose whether or not to send their child to a regular school, but when the disability is severe, there is often not much of a choice.”



THE ONLY OPTION

“Bragi began attending Safamýrarskóli in 6th grade and his entire education has been there. There was no other option as far as we were concerned,” say Sigríður Einarsdóttir and Ólafur Jóhann Ólafsson, parents of Bragi Ólafsson who is 14 and in 9th grade at Safamýrarskóli.

“Like all children, Bragi has the right to attend the regular school in his area. Today it is the norm to steer handicapped children in this direction, but we knew that it wasn’t the right thing for him. As a result of his disability, Bragi’s education is very different from that in the regular school system. Integration in the school system certainly has its benefits for some, but children must be viewed as individuals and it must be evaluated whether or not they will thrive in a particular environment.”

Bragi has Cerebral Palsy with quadriplegia. He lacks motor skills, has limited ability to communicate, and is epileptic. Throughout the years his physical abilities have deteriorated. Bragi has had to undergo various operations due to his disabilities and is therefore well acquainted with the health care system, despite his young age. The muscles and tendons in his groin had to be lengthened, for example, since his hip became dislocated due to physical tension.

“He is very spastic and has a lot of muscle tension, so a device was installed in his abdomen that pumps muscle relaxers directly into his spinal column. He is a lot easier to care for since that was installed, even though it was hard to agree to such an operation not knowing if it was the right decision. But we soon saw that it made a vast difference. Caring for him was easier and physically he felt much better. Before that he was sometimes stiff as a board. There was such immense tension in his muscles,” says Ólafur.

“He gets most of his nourishment through a tube. His ability to eat is one of the things that has deteriorated with time. He used to eat well, but there came a time when he stopped wanting food.  At that point a stomach tube was installed. It makes his care considerably easier, plus we know that he’s getting the nourishment he needs. He needs quite a lot of medication, for example for his epilepsy, and after the tube was installed it has become a lot easier to administer the medication.” 

Sigríður and Ólafur, who have two older children, say that amazing work is being done with the children in Safamýrarskóli. “The relationship between the parents and the teachers is different and more comprehensive than it is in the regular school system. Bragi had greater motor skills when he was younger, but part of that has been lost over time. The service provided in the school to maintain and to improve his ability is crucial.

“Many of the children need a lot of assistance. The  staff tends to all the children’s needs, they don’t just nurture the intellectual development but rather focus comprehensively on their physical, mental and emotional needs. As a result there must be a lot of pressure on the staff, both physically and emotionally. This will always be ideological work – no teacher can last in a job like this unless he or she is very involved and has a lot to give. It is incredibly demanding.”

They say that despite his severe handicap, Bragi loves having people around him. “I can tell by his physical and facial expressions that he knows when people are talking about him, and what they are talking about,” says Sigríður. “It’s the same when people are talking about someone he knows, or things he likes. And he is always happy. There are no problems as far as he is concerned, when it comes to life and living.”

“If he is not happy, there is something wrong, and it must be addressed,” Ólafur adds.

Like most of the children in Safamýrarskóli, Bragi lives with his parents. Every second week he goes to the Rjóðrið care centre for restive care. “I wouldn’t say he’s difficult at home, but of course this makes the running of the household easier. We can rest more; after all, taking care of Bragi demands a lot of time and energy. This also gives us a chance to pay more attention to the other children,” say Sigríður and Ólafur.



CONSTANTLY FINDING SOLUTIONS

“It has taken me a few years to grasp how remarkable the work performed at Safamýrarskóli really is,” says Sigríður Kristín Hrafnkelsdóttir, a single mother of 11-year-old Hrafnkell, who is in 5th grade. Hrafnkell has one brother, who is a year older.

“Everything is possible at that school. The teachers simply make up toys and programs that fit the children. They’re constantly finding solutions.”

In Hrafnkell’s class there are four children and they all know each other. “I know he recognizes them. He knows his surroundings very well, but he only communicates with his expressions and eyes.”

There is discussion in the Icelandic education system about educating the disabled and healthy children together. Sigríður feels that careful consideration must be given before this is done.  The staffs at the specialized schools have such valuable knowledge and skills and she fears that integration into the normal schools will diminish their impact. 

I completely understand that parents might prefer to enroll their children in regular schools, but I cannot see Hrafnkell in the system, as it is set up today. There is so much care involved in his daily routine and I don’t see the regular school system providing that. However, one should be able to demand that the school system prepares to take care of these children in the future, just like other children, under the policy of inclusion. It is their right. Service for these children after school and during the summers is also essential for these families. Unfortunately this has been lacking.

Hrafnkell has a disability called micro-cephaly, which is a genetic defect that causes the brain to develop abnormally. Sigríður has learned an enormous amount in the 11 years that she has been the parent of a disabled child, and she is constantly learning something new. She is satisfied with many of the services for disabled children and their families, but says that some things need to be improved, including the school’s facilities.

“The work being performed is fantastic, but it is sometimes impossible to endure the school premises. When it is warm outside the air is stagnant, the corridors are narrow, the rooms are dark, and part of the schoolwork is conducted in a basement. It’s time for this to be improved. My older son attends a modern school, a palace made of granite, but my Hrafnkell is stuck in these premises that are completely outdated. Where are the priorities?”

Hrafnkell is home with his mother and brother every other week. In between he is cared for in two separate locations, in Álfaland and Rjóðrið.

“Hrafnkell has three different homes each month,” says Sigríður, who feels this is too much for a small child. “I would like to be a lot more active in pointing out things that are not working, but you’re so grateful to get any help at all that there’s no energy left for making demands,” she says, and shakes her head. “Two years ago Hrafnkell started being away from home on a regular basis. He has become so big and heavy and the care is so difficult that it helps a lot. But I am dependent on a lot of people for the way I live my life. It can get very complicated."

“I have a big backpack filled with guilt about the things I can’t do for Hrafnkell, and I stuff things into it constantly. I soon learned not to get too involved when he is at one of his other homes; I try to look after my other son and myself during those times. It also takes a lot of effort to ask someone to help you look after your child. Parents of disabled children burn out far too frequently.”

Despite the work involved in taking care of a disabled child, she says that having Hrafnkell has made her life more rewarding.



ENORMOUS DEDICATION

Mary Ellen Mark becomes absorbed by the projects she works on. In fact she becomes obsessed. From the day she began taking pictures in Öskjuhlíðarskóli, Lyngás and Safamýrarskóli in September 2006, until she took the last photographs for the project four months later, her thoughts centered on the children in the school; what they were doing, how they were getting along, and what their relationships with each other, the staff and their families were like.

Ever since Mark began her photography career in 1964 her pictures have revolved around people. More often than not they have shown the conditions of a particular group that in some way is isolated from society. She might be described as a social documentary photographer, who is not objective in her approach but rather full of passion for her subject. That’s how it was in Iceland. Each day Mark traveled between the schools with her cameras and photographed what was going on in the daily lives of the students. Mark and the students got to know and understand each other.  A few of the children in Öskjuhlíðarskóli were able to speak to Mark in English, but in other cases assistants and teachers acted as interpreters. In Safamýrarskóli and Lyngás it was as if she immediately connected with certain students, forming a relationship with them from day one. She did not merely observe the lives of the children, she participated in it. She got into the swimming pool with them and spent recesses in the school yard in temperatures of –10°C.

“I enjoy watching her; such enormous dedication,” Erla the principal remarked to a journalist who was watching Mark work.

Those who know Mary Ellen Mark know that she is totally passionate about photography. She firmly believes that her next project will be her best, but this also calls for a great deal of work and sacrifice. She gives the work her all, with the aim of taking the most powerful photographs possible. Mark is often commissioned to take pictures of people who have earned some kind of recognition in this world, and although she completes these projects memorably, she is more interested in getting to know those who are unknown, who exist far from the gaze of the world. A few days before she returned to take photographs of the children in Iceland she was commissioned to photograph a former president of the United States. When asked how it had gone, her response was brief – her thoughts were again with her disabled friends in the schools, for they had captured her heart and mind.

Mary Ellen Mark’s interest in the people she chooses to photograph, their views of the world and their opinions, is evident. A few years ago I watched her taking photographs of impoverished AIDS-infected parents in the Bronx in New York City. She conversed with these people with the same vibrant interest as she displayed with the disabled children in Iceland. She earns people’s trust so easily because they see it is genuinely important for her to portray and communicate their stories and experiences. The greater the length of time she has in each place, the closer she feels she comes to her subject, and the more likely it is that she will get the photographs she seeks. The need to move closer, to become intimately acquainted with and to understand – those are the driving forces in her photography.

Even though Mary Ellen Mark is best known for visual narratives that have appeared in books and magazines, she strives to take photographs that are able to stand on their own, in terms of form and content. Single images that tell a complete story. She does not believe in telling stories with pictures that do not stand on their own. That is precisely the way her pictures of Icelandic children are. They are charged with the feelings of the children and the warmth and amiability of the people who look after them: the joy, laughter, fatigue and grief inherent in their daily life. Mark elicits the qualities that make life unique.

Mary Ellen Mark chooses to photograph in black and white. The expressions of the people are always central to her pictures, and through the interplay of forms within the picture frame she has created a unique and personal style. When working on a large project she tends to spend the time away from her subjects examining contact sheets, choosing from what she has captured and examining what might work better. She builds the story in her mind, sees what she has got and what she still needs to capture. At the end of a long day of shooting she sometimes claims she has been lucky; if so, outstanding photographs can be expected.

It was interesting to observe the relationship between Mark and Bell during their work at the school. They searched for images for each other and discussed the progression of the stories that were taking shape in their minds and on film. Their approaches, however, are very different.

“Photographs cannot depend on the subject’s story. Each one must stand alone,” says Mark. “A motion picture camera can do virtually anything, depict things that cannot be depicted by a photograph, such as show the boy in Öskjuhlíðarskóli who can twirl plates and trays on his finger, or the boy who smiled in the massage room when the smell of the massage oil reached him.”

“Great photographs exquisitely capture all of the essential elements into one beautifully organized moment,” Bell says. “They allow us to relive that moment forever. In film it’s different.” The moment is created over time with multiple images, sound and music. It is a totally different way of thinking, of telling the story.”



THE SAME RIGHTS AS OTHER CHILDREN

While Mary Ellen Mark was working on the project, it occurred to her that along with photographing the students and the school staff it would be interesting to show the interiors of the schools themselves. The buildings, furniture, assistive technology, wall decorations and teaching materials. After seeing the book Specimina Commercii by Icelandic photographer Ívar Brynjólfsson, she suggested that he take the pictures, since Ívar has become known for photographs in which he focuses on man-made structures.

“In these photographs I try to depict the surroundings and what I saw inside the schools,” says Ívar, who is a photographer at the National Museum of Iceland. “This is the same sort of approach I have used on other projects. I try to describe what I see in the clearest way possible, to make the work in that space as visible as possible, without showing the people. It can be very interesting to look at photographs of things that people leave behind.” He adds that his approach is completely different from that of Mark, because she focuses on people. “It will be interesting to see what happens when all of these photographs come together.”

The exhibition "Extraordinary Child" at the National Museum of Iceland, incorporates the photographs of Mary Ellen Mark and Ívar Brynjólfsson, as well as the film Alexander by Martin Bell. The exhibition also includes a selection of artwork created by students in Öskjuhlíðarskóli and Safamýrarskóli. Both schools place great emphasis on stimulation through crafts and art creation. Ingibjörg Jóhannsdóttir, principal of the Reykjavík School of Art, selected the artwork for the exhibition.

Museum Director Margrét Hallgrímsdóttir says that the exhibition forces viewers to look directly at the children and their circumstances. “Simultaneously we are directing our gaze at ourselves, our own perceptions and feelings,” she says. “We get to know that these children are extraordinary, like all children. They have the same rights, the right to proper care and education, under the best possible conditions. They also have a right to receive positive attention and to be listened to on their own terms. We must also look directly at the children’s surroundings, at our contemporary society."

Mary Ellen Mark’s photographs show the lives of the children within the school walls as they really are. It is a true narrative by a photographer who says she is very grateful for the time she was permitted to spend with the disabled children. “This was a difficult project, simply because it would be easy to violate their trust,” she says. “These children live difficult lives, in spite of excellent care. I don’t want to make this look easy and happy-go-lucky. Because it’s a tough life.”



EXTRAORDINARY CHILD

Mary Ellen Mark

In the summer of 2005, I was asked to produce five photographic portfolios for the Morgunbladid Newspaper.  One of the projects I requested to photograph was a school for disabled children in Reykjavik.  The newspaper arranged for me to spend a day at Öskjuhlíðarskóli.  It was an unforgettable day.  I immediately fell in love with the children as I followed them through their daily activities, which included a swimming class.  It was in that swimming class that I met one young boy that especially won my heart.  This boy walked with the aid of a walker with unimaginable effort and was fearless in the water.  He used precious few words but had a strong presence.  I took many photographs of him swimming.  On the bus ride back to school, he sat in front of me and kept leaning around his seat to make sure I was still there.  His name: Alexander. 

That afternoon, my friend Inga took me to the showroom of an Icelandic fashion designer, Steinunn Sigurd.  When we were introduced she asked what I was doing in Iceland.  I told her about my day at Öskjuhlíðarskóli and how impressed I was with the school and children. I told her I had made a special friend in a boy called Alexander.  Steinunn smiled proudly and said, “Alexander is my son.”  It was fate.

I’ve always believed in fate, and I took this to be a sign that I should follow my heart and continue with this project. 

When the pictures from my day at Öskjuhlíðarskóli were published in Morgunbladid, there was a very strong, positive, public response.  And of course, Alexander was on the front page.  The photographs where seen by the National Museum of Iceland’s Director, Margrét Hallgrímsdóttir.  She then contacted me through Alexander’s mother, Steinunn.  Margrét felt that a project on disabled children in Iceland would make a powerful exhibition for the museum.  This was especially relevant because the National Museum of Iceland had just been awarded a Special Commendation from the European Museum Forum in 2006. This commendation was for the museum’s commitment to raise awareness and respect for all museum visitors and provide excellent access for all guests. 

I was very excited by the National Museum’s proposal.  All year I very much looked forward to returning to Reykjavik to work because I had been thinking about Alexander and the other children I met at Öskjuhlíðarskóli ever since I left Iceland. 

I returned to Iceland in August of 2006 and was given complete access to two schools and a day care center for disabled children in Reykjavik.  The Öskjuhlíðarskóli is mostly for higher functioning children.  Safamýrarskóli is for more severely affected children.  The Lyngás Day Care Center cares for the full spectrum of disability. The children I photographed ranged from mildly disabled, both physically and mentally, to profoundly disabled.

Rather than an experience of despair, the seven weeks I spent with these extraordinary children was one of enlightenment and hope.  I quickly discovered that within each child, even those who seemed totally disconnected, there is always a personality and a relationship to be made.  I was moved by the children’s inner-strength and was also touched by the devotion of the teachers, caretakers, and families.  I hope my photographs convey the strength of these children as well as my great respect for them.

During the seven weeks that we spent in Iceland (over three separate trips), my husband Martin Bell, made a film, “Alexander”, focusing on Alexander and his relationship with his parents (Steinunn & Palli), grandparents (Edda & Siggi), friends, teachers, and even his dog; Rocky.  Martin’s film also visits Öskjuhlíðarskóli, Safamýrarskóli, and Lyngás.  The film shows how the teachers and caretakers make a strong connection with the higher functioning disabled children as well as with children who on the surface seem unreachable.  

As chief curator, producer and coordinator Margrét Hallgrímsdóttir, from the National Museum of Iceland, was the driving force behind this project. As others, besides Martin and myself added their contributions, the project grew:

Ívar Brynjólfsson is an Icelandic photographer who works for the National Museum of Iceland.  He was a student at the Art Institute in San Francisco.  His beautiful interior photographs perfectly capture the atmosphere of both schools. 

Ingibjörg Jóhannsdóttir is an Icelandic artist, print maker, and educator.  She is the head of the Reykjavík School of Visual Art.  She has curated a group of paintings made by children at both schools.  This artwork shows the strong creative force that exists in the children.  Many of these paintings were made by profoundly disabled children.

Einar Falur Ingolfsson, is a photo editor and also an accomplished photographer and journalist.  It was Einar Falur who originally assigned me to photograph at Öskjuhliðarskóli.  There is no one better suited to write about my work and these children. 

In my life as a photographer it is very rare to be given such a remarkable opportunity to make photographs.  “Extraordinary Child” is the kind of project that brought me to photography.  I hope that after seeing the exhibition, the book and the film, the audience will have a more intimate way of viewing children with disabilities because they are truly extraordinary.  To paraphrase Alexander’s mother, Steinunn, “A lot of people have never dealt with disability before. For those people who have not experienced it we hope we can bring them into that world because you learn so much about yourself by entering their world.”

Mary Ellen Mark



SPECIAL THANKS

I want to thank The National Museum of Iceland, especially Margrét Hallgrímsdóttir for having the insight and fortitude to make this project happen and Anna Guðný Ásgeirsdóttir, Ágústa Kristófersdóttir, Inga Lára Baldvinsdóttir, Bryndís Sverrisdóttir and Brynhildur Ingvarsdóttir for working so hard on every detail and coordinating the project.  Many thanks to Bjarki Ásmundsson, my photo assistant, and Kolbrún Þóra Löve, who volunteered to help us, for their hard work and devotion on location.  I want to thank Ívar Brynjólfsson for his tireless perfection in processing my film for this project.

Martin and I also want to thank the people in our studio for their enormous help in the organization of this project: Meredith Lue, Julia Bezgin, and Brigitte Grignet.

I have enormous gratitude to three very talented people: Mary Shanahan for her always-beautiful and inventive graphic design.  Chuck Kelton for his exquisite prints.  And Bob Hennessey for his brilliant separations for the book. 

Dagný Annasdóttir & Jóhann A. Kristjánsson from Öskjuhlíðarskóli, Erla Gunnarsdóttir & Drífa Ármannsdóttir from Safamýrarskóli, and Birna Björnsdóttir and Hrefna Þórarinsdóttir from Lyngás, along with the teachers and caretakers for giving us total access to a world that I will never forget.  I want to thank the parents and children at both of these schools and daycare for trusting us to document their children’s lives.

Steinunn Sigurd & Palli Hjaltason invited me and Martin into their home and shared with us beautiful and intimate moments of their lives that will stay with us forever.  And it was Alexander, without any words, that was the genesis of this project: extraordinary child.   

Great thanks to Glitnir Bank for acknowledging the importance of this project with their support.  

This book is dedicated to all the children at Öskjuhlíðarskóli, Safamýrarskóli, and Lyngás for allowing me into their lives.

--Mary Ellen Mark