Accessability. Beyond physical environments by Swedish Institute

AccessAbility. Beyond physical environments Photographs by Markus Marcetic

AccessAbility. Beyond physical environments These portraits can be summed up in one word – dignity. To live with dignity, regardless of disability, is a human right according to the United Nations Convention on the Rights of Persons with Disabilities.

In 1994, Sweden introduced the Act concerning Support and Service for Persons with Certain Functional Impairments, a set of laws designed to give people with disabilities opportunities to lead independent lives and enjoy full participation in society.

That is not to say that the fight for equality has been won. But giving everyone a chance to be seen and heard is a step along the way.

Prior to that, in 1993, the Assistance Compensation Act had been introduced. Through these acts Sweden strives to ensure the right to personal assistance, the right to live in a home suitable for one’s needs, and the right to purchase personal assistance services.

The 14 individuals photographed here and their tales are not the end of the story – they are a snapshot of a point in time in Sweden.

Costs are partly covered by national social insurance. Access to this funding is independent of the applicant’s own finances and determined on local level.

Citizenship, equality and full participation. These principles are at the backbone of Sweden’s disability policy.

As a result, many people in Sweden with intellectual disabilities are able to live in their own homes today; and people with physical disabilities can travel with a personal assistant, both for work and leisure.

In 1989, political citizenship was granted to all people from the age of 18 in Sweden – literally. Prior to that, many people with intellectual disabilities were classified as minors and thus excluded from voting in elections.

Sweden’s advances in policies and laws concerning accessibility come out of a long grassroots struggle involving a large number of organisations working for different needs.

Since 2009, Sweden has a government agency – the Equality Ombudsman – working against all forms of discrimination and for everyone’s equal rights.

In 1968, the lobby organisation AntiHandikapp (Anti-Handicap) pushed for a debate about social conditions for people with disabilities.

The aim is to strengthen the legal protection of those discriminated against on the grounds of gender, transgender identity or expression, ethnicity, religion or other beliefs, disability, sexual orientation or age.

That same year compulsory school attendance was extended to people with disabilities, effectively leading to the integration of the school system.

Still, needless to say, people will always have to push on their own for improved equal rights. In 2011, disability campaigners began protesting outside the Swedish Prime Minister’s office once a week in an effort to classify inaccessibility as an act of discrimination.

School principals in Sweden bear responsibility for ensuring that pupils and students with disabilities can reach the same educational goals as everyone else. This covers everything from tailoring the way subjects are taught to adapting school buildings to make them accessible.

In 2014, after three years of protests, the discrimination laws were extended to include inaccessibility. Voices are already raised that the law allows for too many exceptions.

In 1977, the Swedish government changed the Building Charter, removing a clause that limited the responsibility of property developers. From then on, essentially all new buildings had to be accessible to people with disabilities. In existing buildings, obstacles that can be easily eliminated should also be corrected.

There is still work to be done. For people with disabilities to enjoy full equality in society, we need to see more changes for the better in environments, laws – and attitudes.

‘For me it is very important to be seen.’

at the unemployment centre and colleagues who all assumed he couldn’t lead a regular life. He set out to prove them wrong, spurred on by his father. Sure, he ‘hid from the world’ at times. But with small successes, his confidence grew. Despite severe dyslexia, he graduated from a two-year high school where he trained as a chef. By accident, he learned to read by holding the texts upside down. Somehow that was easier.

– Kenneth Åstrand ‘I am very proud of where I am today,’ says Kenneth. He is surrounded by tulips and geraniums at his local gardening centre where he comes as often as possible. He carries a knitting bag and smiles broadly. He seems to be the happiest man in town.

‘I have tried 25 different jobs but I have always been hidden from people. I have been stowed away in a basement to do menial tasks. For me it is very important to be seen and to come outside.’

Kenneth is in his mid-fifties and enjoys his service job at a fast food restaurant. His job is to make sure the customers have a nice visit in a clean environment. Some days he gets to hand out balloons to the children – the highlight of the job. ‘The kids give back so much joy,’ he says.

He wants politicians and people in general to focus on getting people with disabilities outside. Everyone needs to socialise and work. Kenneth tries to get out as much as possible. Besides his job and his trips to the gardening centre, he meets up with his group the Linköping Knitters at a local café once a week. There are 40 people in the group. Kenneth is one of three men in the group.

When Kenneth was seven years old, the doctors discovered a brain tumour. After surgery he stopped growing. The tumour also caused him to very quickly go through puberty as a child. ‘I had facial and body hair. Except for my height I looked like an adult, but I was only seven.’

‘Things are getting better and better for me. Instead of going straight forward perhaps I need to take a step to one side every now and then. But I resolve everything myself. If I don’t know how then I look it up online.’

Over the years, Kenneth has faced both discrimination and bullying. He tells stories of teachers, schoolmates, employers, people

‘I am a lesbian, an immigrant and have a functional disability, so I guess I stand out in a crowd.’

It took quite a lot of time for her to find a job after she graduated from university. ‘That no-one would hire me obviously had to do with who I am. I was not born in Sweden and have a foreign-sounding name, I use an electric wheelchair, and I am also a LGBTQ person. I guess it’s easier to hire someone else.’ Sahar feels discrimwination almost every day. ‘I am a lesbian, an immigrant and have a functional disability so I guess I stand out in a crowd,’ she says.

– Sahar Mosleh

Sahar laughs a lot but she also has moments of anxiety and resentment. She is active in the fight against discrimination and inaccessibility.

Sahar values equality and friendship, and thinks that routines make people grey-haired. Her wife of four years is pregnant with a son. At first they didn’t want to know their baby’s gender but curiosity got the best of them.

In her spare time she lectures about homosexuality, LGBTQ -related questions, sexuality and alienation. She has also helped organise Stockholm Pride and been their opening speaker.

‘Some of our friends say that my wife and I are obsessed with equality, that since I have a functional disability I should do less than my share of household work. But we actively work not to let it be that way. Right now my wife is pregnant, so I really need to step up my game,’ Sahar says.

Sahar has congenital brittle bones but does not want that to categorise her. ‘If someone asks me what happened to me, why I am so short, I sometimes tell them I fell on the street and the fall made me this way,’ she says and laughs. ‘Why should I have to explain myself?’

Sahar has access to a personal assistant nine hours per day. ‘The law regarding personal assistance is one of the most valuable things about Sweden,’ she says. It’s a question close to her heart and also her job, as operations leader at a company that provides personal assistants to people with needs.

She has a strong will and rarely backs down. ‘I have to be confident and strong, otherwise I wouldn’t manage,’ she says. ‘But if it gets me down then I call my dad, we’ll have a glass of whiskey and talk. He is my best friend.’

‘It would have never worked out for me without my family and my wife.’

it easier for him to navigate. Every now and then his twin daughters or their grown children come by for a visit. Bengt is keen on helping out with household work and loves to vacuum. ‘It gives me a special kind of contact with the house.’ Though retired, Bengt stays active as codirector of Disability Rights Promotion International, an organisation that informs people with disabilities in the developing world about their human rights.

– Bengt Lindqvist ‘Everyone wants to make society accessible but the issue almost never makes it to the political table,’ says Bengt. ‘It’s as if accessibility is not a political question. A lot of people think the work is already done. It isn’t.’

In 1975, he became chair of the national association of the visually impaired. He was elected member of parliament in 1982 and appointed Minister for social service and family policy in 1985.

Bengt, if anyone, should know. His view on human rights and accessibility was shaped by a year-long fight with the Swedish school board. Having completed his university studies with teaching credentials, he was not allowed to work because of his visual impairment. He eventually won and began his career.

Between 1994 and 2002 he served three consecutive terms as United Nations Special Rapporteur on Disability. Over the years he has also received three honorary doctorates.

Bengt was born in 1936. Aged eight, he was diagnosed with a degenerative eye disease, and at 15 he could barely see at all. Supported by his parents, Bengt became one of the first people in Sweden to be integrated from a school for the blind to a regular school.

While a student at Lund University, Bengt considered a career as a jazz drummer. He still keeps his drum set and plays from time to time. He says a lot has happened in accessibility thanks to technological progress. ‘But for people with disabilities it’s a constant battle. We have to act the police and point out every single thing that prevents us from taking a full part in society.’

‘It would have never worked out for me without my family and a certain young woman I married in 1960,’ Bengt says. Today, he lives with his wife in a house with a garden that they have arranged to make 8

‘Happiness is like with anything else, you have to practice to be good at it.’

In the mornings she focuses on any fun things ahead, and how to handle anything worrisome. She also meditates, listens to music and exercises. ‘Some people are indifferent to their own lives,’ says Lovisa. ‘But happiness is like with anything else, you have to practice to be good at it.’

– Lovisa Söderberg

She sees accessibility issues with stairs, public transport and the like in Sweden. But not everything is about physical movement.

Lovisa says her ‘default mood’ is happy. And it shows – she smiles and laughs constantly. The 26-year-old tries to find something positive in everything, including her disability.

‘The way I see it you can improve accessibility either by building ramps or by people helping people. In Sweden all the focus is on building solutions and we’re very independent. Needing help means you have failed. It’s not like that in some other countries, everyone is helping everyone else.’

Lovisa has cerebral palsy, and when she was little, doctors told her she would never be able to go horseback riding or skiing. Her dad, however, told her that unless there is a sign saying something is banned, then it’s allowed. That gave Lovisa the courage to try plenty of new things in life – like horseback riding and skiing.

For the past two years Lovisa has been able to explore a lot more of nature thanks to her four-wheeler. ‘I love to pick berries and mushrooms, to be by the water. It’s amazing. I couldn’t get to these places before.’

‘I might not do all of it exactly the same way as other people, but I do it,’ she says. Today, Lovisa works as a host for one of the most popular kids’ television shows in Sweden. She saw the job as a chance to give children a more diverse image of people in wheelchairs. ‘Growing up I never had a role model. I never saw anyone in a wheelchair on television. So when I got the chance, I just had to do it.’ 10

Being in nature, going dancing, staying in mental and physical health are much more important to Lovisa than money or material things. ‘I do wish I could skip in my stride. That is something that shows you are happy. But then I sometimes ask my friends to skip for me,’ she says and smiles.

‘I wish more people with disabilities would make a fuss.’

has come quite far in Sweden but there is room for improvement, he says. Decision makers still don’t adopt the disabled person’s perspective. ‘I should be able to go to work and have a social life just like anybody else. I shouldn’t have to worry about which bus will accommodate me, or whether the elevator in the subway works today. If I could fix one thing it would first of all be public transportation.’

– Mårten Hennéus Twenty years ago, Mårten was in a train accident that forced him to have his left leg amputated. Since then he uses a prosthetic leg, but it has not slowed him down much. He remains keen on trying new things in life.

The leg may not always be comfortable, but Mårten does not let it steal much of his focus. ‘I like to work. I’ve been in job situations where I cannot wear my prosthesis, so then I’ve simply hopped around on crutches and done the interviews that way.’

Putting on the leg in the morning comes naturally, and Mårten’s routines otherwise are not different from anyone else’s. He works as a journalist, drives a regular car and takes part in cultural events.

He is his own man and does what he wants to do. Where there is a will, there is a way.

But he had his doubts. ‘Immediately after the accident, I didn’t think I would be able to lead a normal life, to be able to have a girlfriend or a job,’ he says. ‘I worried a lot about the social aspects.’

As a child, he always dreamt of flying. When he finally decided to give it a go, the government agency in charge of flight licenses said right away that he would never get a permit.

Speaking to people in a similar situation was a big help. Physical care is obviously important, but so is taking care of the emotional wounds. ‘I was lucky to meet a guy who had been through something very similar. He became my mentor.’

His eyes light up when he talks about flying.

Mårten now mentors others. He regularly meets recent amputees and wants them to receive the same support he did. Accessibility

‘If you find good thermal columns you can climb really high. It’s almost completely quiet. All you hear is the wind.’

Flying an engineless plane requires you to control rudders with both hands and both feet. Mårten learned to do just that with a prosthetic leg and proved the agency wrong.

‘I handle anger by being engaged in causes and by speaking up.’

Anna’s hearing impairment was discovered when she was three years old. ‘I live with it, but I can’t let it get to me all the time,’ she says of her disability.

– Anna Kain Wyatt

At times, though, she gets frustrated over obstacles. ‘That’s when I go on Twitter,’ she says. ‘I handle anger by being engaged in causes and by speaking up.’

For 25-year-old Anna, social engagement and non-profit work is the ideal way to make a difference. By getting involved she gets to meet new people, see concrete results and also has a great time doing it.

Little things do come in her way, like access to hearing loops at public events or in culture. Anna is dependent on the availability of hearing loops or a signlanguage interpreter, which is not always made available.

‘Sweden has a strong history of people organising around different issues,’ Anna says. ‘Really, just by trying, you make some room for a new voice. And from there, society can be changed for the better. I think that is very cool.’

Not knowing in advance whether she will be able to attend a forum for women’s rights, for example, is very tiresome. In her spare time Anna enjoys video games and watching TV series. With internet streaming, more films and series have become accessible through subtitles.

A self-described optimist, Anna always thinks things can be changed for the better. And that life works out in the end.

She also plays roller derby. ‘It gets rough at times but it’s also a great way to take time off,’ she says about the sport.

Anna recently left the chairperson position of the national organisation for children and young people who are hard of hearing, where she had been volunteering for ten years.

Anna recently graduated from university with an economics degree and is looking for a job in her field. The future is wide open: a new job, future volunteering, or maybe travel. ‘I spent a few months in South America a while ago, and I would love to go back there.’

She is now considering where to focus her volunteering commitment next. It will probably involve accessibility or gender equality; maybe both.

‘If I sit quietly in a corner, that’s how biases are created.’

muscle wasting and mobility impairment. The illness is part of his life but it does not define him, he says. He went to regular schools all his life and has not been subject to discrimination personally. But he knows of those who have. ‘If something really discriminating happened to me, I would not accept it. I would post on my blog, on social media, go to newspapers, everything.

– Johnie Hjelm ‘In my family people have always set up their own companies,’ says Johnie. ‘So I probably get it from there, to start up something and work as much as I can.’ A gifted web developer and an entrepreneurial spirit, Johnie started his first business venture with a classmate back in high school.

‘We live pretty well here in Sweden. There are new laws in place that prevent discrimination, and these laws are a step in the right direction even if they are not perfect. And there’s nothing that says that I am not allowed to do the same kinds of things that others are doing.’

With a full-time job and a small online business on the side, Johnie talks about work with enthusiasm. It’s fun, to say the least.

Still, preconceptions and misconceptions about people with disabilities are everywhere, he admits. We are quite far from a society that recognises that behind every disability, there is an individual.

Despite all the work, he still finds room to play elhockey, a form of floorball, twice a week. He is a sports fan and appreciates a dark beer in the company of friends. He is close to his family.

Johnie currently has a personal assistant who is with him 18 hours of the day. It means some limitations. ‘Everything requires more planning. And I can’t just walk out of the house and go somewhere. I need help.’

Outgoing and proud, he wants all of him to come across. ‘If I sit quietly in a corner, that’s how biases are created,’ he says. ‘If I show people who I am and what I want, that’s how prejudices and ignorance are defeated, bit by bit.’

With unlimited access to a personal assistant, he would have been working abroad. ‘For sure,’ he says. ‘I would love to live and work in the United States.’

Johnie uses a wheelchair to get around. He has spinal muscular atrophy, which leads to

‘One day I will compete in the Paralympics.’

She really likes school and can’t think of a single subject she doesn’t care for. The school she goes to is close enough to home for her to walk there and back.

– Nora Ahlström

If Nora comes home before the others in the family, she calls one of her parents to let them know. But most days she has activities after school and is busy.

‘I have been swimming since I was a baby,’ Nora says, and proudly shows the medals that decorate her room. ‘I am very good at it.’

At first Nora went to a regular school but after sixth grade it became too competitive and difficult to keep up, so she transferred to a special needs school with smaller classes.

Nora has been competing since she was five. Her parents began with baby swimming for Nora as a form of rehabilitation. Now 16, Nora is determined to one day compete in the Paralympic Games.

Besides different sports Nora has a keen interest in dogs. She spends plenty of time at her desk reading and writing about the different breeds and their behaviour. The family does not have a dog but they are considering it. Nora hopes for a golden retriever or a schnauzer.

She trains three times per week and in addition travels by train all over Sweden for competitions. At her school there is an afterschool programme where they focus on sports and health. That means swimming, yoga, running, playing floorball and generally staying active. Nora was born with Down’s syndrome. She has had a pacemaker ever since she was one, but that does not affect her ability to exercise. She has replaced the pacemaker twice already and doesn’t give it much thought.

Nora and her best friend Irma often spend time shopping or going to the cinema or just staying at home listening to music. Strong-willed, Nora is not afraid to try new things. Taking street dancing classes is next on the agenda, and she already knows what to work with later in life. ‘I’m going to be a designer. Design rooms and houses. And work with carpentry.’

‘I speak Swedish, English and Creole.’

His parents feel they receive good help even though they have to persist with the authorities to get what they need. The extra help ensures that their son can keep up with others of his age. At some point he might move to a regular school, but right now this is the best solution.

– Aluspah Brewah Aluspah could not speak at all until he was nearly five, but he sure has made up for time since. Now aged nine, he speaks three languages fluently: Swedish, English and Creole.

Aluspah lives with his parents and his twoyear-old brother in an apartment. Aluspah is the first to get up in the morning. While the others sleep he watches TV or plays video games. He is especially good at Minecraft. He is a really fast runner and also likes swimming, basketball and dancing. And he is happy when he gets to travel.

When he was three, Aluspah’s parents became concerned and took him first to a doctor, where he had his hearing examined, and then to a speech pathologist and a psychiatrist. He was finally diagnosed with a mild development disorder which meant he would have some learning difficulties. But soon enough he started to speak and immediately put together sentences in different languages.

Aluspah has been to Sierra Leone, where his grandparents, aunts and a cousin live. He looks forward to going back there and swim at the beach. He has also been to China, where his father used to play professional football.

Despite learning difficulties throughout his schooling, Aluspah reads and writes well. He keeps a diary and loves to write down the events of the day before going to bed.

He has tried to play football like his father but right now prefers running. Aluspah loves to be outside and if he is not at an after-school activity he often spends time in the local playground with his best friend.

He follows the same educational programme as any other child in Sweden, only he does so at a special needs school.

Aluspah’s hero in the playground is his tenyear-old cousin Prins. ‘If someone is mean to me, then he protects me,’ Aluspah says. ‘And I protect my brother. I don’t play much Lego at home because he might eat the pieces.’

That means he gets more attention and help from teachers. There are only six students in his class, and several teachers.

‘To greet people is a way to check if they are okay.’

his life now instead of his past. ‘I have too many memories from Romania,’ he says. His dream job is ‘to be a society hero’. He already seems to know and be appreciated by everyone in his town. ‘To greet people is a way to check if they are okay,’ he says.

– Laurentsio Pettersson

Through the Swedish charity organisation Star of Hope, he is ambassador to Romania, where he raises money and awareness for disabled and homeless children.

‘Media and culture is not very accessible. You almost never see people with disabilities on TV or on a stage. Between Paralympics, we are invisible,’ says Laurentsio, who is working for a change.

Laurentsio knows first-hand how important it is to enjoy financial stability and really appreciates how the government in Sweden helps people financially.

Without a regular job, Laurentsio takes assignments as inspirational lecturer, actor in films and television and as a model. In his hometown Bollnäs, he is producing a cultural event that aims to highlight people with disabilities. The show will include music, lectures, a fashion runway and hopefully theatre.

When asked why he feels so strongly about people with disabilities in culture and media, he says, ‘The more people come in contact with us, the more understanding they have. It’s important if we are to remove discrimination and prejudices.’

In 2015 a book about his life will be published. It comes in the wake of a documentary film from 2012. Shot in Romania and Sweden, it told the story of his life, from an orphanage in Romania and a move to adoptive parents in Sweden at the age of 11, and his development since.

He loves to watch football in his spare time, in particular Champions League games. He used to play a lot of sports himself; at the 1999 Special Olympics in Raleigh/Durham in North Carolina, he won three gold medals in short distance wheelchair racing.

He is not sure what to call his disability, but he was born with malformation of the legs. His mother was taking medication during the pregnancy and some doctors have suggested that it could be phocomelia linked to the drug Thalidomide. Laurentsio prefers to focus on

Then he decided to dedicate his life to exposing both himself and other people with disabilities to a mass audience. And if he is not one already, he just might become a hero in the process.

‘I have a lot of fighting spirit.’

minutes later they allowed people back in. It had been a false alarm. The alternative would have been to sit still and wait for rescue.’ But Niklas is not the kind of person who sits and waits. As a teenager he left home for the town of Bollnäs to attend high school for athletes. It meant managing on his own.

– Niklas Törnblom Niklas was only two hours old when he underwent surgery for the first time. He was born with a split spine (spina bifida) and had no calf muscles and only very weak muscles in his thighs. Today he looks back with pride at 21 Swedish Championship medals in wheelchair racing, six of them gold. ‘I rarely hesitate. I have a lot of fighting spirit,’ he says and smiles broadly. Niklas is 34 years old. He has orthoses (external support for his legs) to help him walk, but mainly relies on his wheelchair. Doctors encourage him to walk with crutches as much as possible. He manages about 20 meters at a time. During a recent trip abroad, Niklas was staying on the 14th floor of a hotel when the fire alarm sounded. He was without his orthoses; the elevator was shut down and the only way out was for him to crawl down all 14 flights of stairs, using the handrails to push forward. ‘I finally managed to push open the fire door on the bottom floor and crawl out. A few

Moving to Bollnäs proved the perfect change for Niklas, who had previously experienced his share of teasing and bullying. ‘It was a big change once I moved here,’ Niklas says of the town he has since made his home. ‘I suddenly had more friends, more freedom, more help and less hassle. Bollnäs has a fairly large community of people with disabilities and using a wheelchair is not out of the ordinary.’ He is grateful for his modified car. The modifications and part of the cost of the car were paid for by the Swedish Social Insurance Agency. ‘It’s an incredibly important freedom to be able to go wherever you want on your own,’ he says. ‘All people, regardless of disability, should be able to participate in society on the same conditions as non-disabled.’

‘I want to talk about something I am good at, not about my condition.’

Guide dogs also attract too much attention from passers-by. ‘A lot of people don’t understand that the dog is working and should not be distracted. It mostly has to do with poor knowledge, but some keep speaking to him even after I correct them,’ she says. Sara studied ethnology and literature at university. Literature is extremely important to her, as is everyone’s right to language. When she was 21, Sara published her first novel, Gloria, a book about idolatry.

– Sara Shamloo Sara’s life is steeped in culture. The 27-yearold is a novelist, a teacher of creative writing, braille teacher, transverse flute player, involved in a feminist collective that publishes books and a consumer of almost everything cultural.

She has written lots since then but not published another novel. ‘It will happen sooner or later,’ she says with certainty in her voice. The book was well received, but Sara thinks she missed out on some media attention due to her reluctance to do interviews. One magazine interviewed her but the questions were not about the book, only her visual impairment. It made her tired, disappointed.

‘Visual impairment is not what I identify myself by,’ she says. ‘I actively choose not to make it the major part of my life and socialise more with people who love talking about culture rather than disabilities.’ Sara started to lose her sight when she was five. She remembers that it became a lot more concrete when she was no longer able to draw. Already then, culture mattered. Sara lives in an apartment in Stockholm with her guide dog. She finds it really strange that Swedish discrimination laws do not include guide dog users, and therefore hesitated a long time before getting him. ‘It means I am not allowed in to certain places because of an aid I have and need,’ she says.

‘I want to talk about something I am good at, something I know, not about my condition. I am a writer, that’s what is interesting about me.’ Sara feels that access to culture is discussed in today’s Sweden, but rarely that people with disabilities should be a bigger part of culture. She is also surprised that blindness is used so frivolously as clichéd metaphors in literature. ‘Could you really do this with another group of people?’ she asks. ‘Why is it acceptable to write about the blind in this way?’

‘All children who receive love grow up a lot stronger.’

and disability has not moved at the same pace as children’s rights or gender equality or other human rights development.’ There is a deep-rooted view in society that people with a disability should be taken care of, she says. ‘We are supposed to be content with receiving care, stay under the surface and not take too much room. It’s an old viewpoint. It’s obsolete and wrong.’

– Birgitta Andersson A sociologist and public administrator, Birgitta has been active in the movement for mobility impaired people since the 1960s. ‘I have seen a lot of inaccessibility in my days,’ she says.

Birgitta was born with one arm missing and with limited mobility in her other arm. She developed scoliosis which affected her lungs and makes it very difficult for her to walk. She uses a wheelchair and has a personal assistant who helps her out with day-to-day things.

‘Society is inaccessible. I want society to become accessible, because that would allow you and everyone else to see that I am no different.’

She used to get around with more ease at a younger age. ‘Stairs were not my biggest problem. For me it was not being able to dress myself.’ In her youth she lived with a woman who helped her get dressed and in return got rides from Birgitta who had a license and a car.

Birgitta worked with DHR, an organisation for people with impaired mobility, from the 1970s and was their chairperson from 1993 to 1999. She was also chairperson for an international aid organisation for disabled people from 1990 to 2004. Considering her impressive career, it is no wonder Birgitta keeps busy despite her retirement. She is involved in an organisation for women with disabilities and another group that works for the right to personal assistance. In addition she is chair of an organisation that preserves the cultural heritage of disabled people. She has seen a lot of social progress, but says: ‘The politics regarding accessibility

Now her husband helps her. They have two children and three grandchildren. It meant a lot for her to be able to support herself and influence politics, but she is unquestionably more proud over having raised two beautiful children. ‘I was extremely loved as a child. All children who receive love, who are made to feel important and welcomed will grow up a lot stronger,’ she says and excuses herself. She has her next meeting. 28

‘What I am most proud of is myself, of who I am, with whatever fIaws I might have.’

‘When I drive a car I don’t feel mentally disabled. But if I have to read and understand a complicated text, that’s when I run into trouble. Up until then I am just like anybody else.’ Conny went to a school for children with special needs, and thinks that was the right choice for him. ‘If I had gone to a regular school, I would have never won any competitions or sporting events,’ he says. ‘But in a special school, everyone gets to win.’

– Conny Bergqvist

He believes that people with disabilities should integrate with people without disabilities, including at school. But integration should only take place for the benefit of individuals, and never for the sake of integration.

64-year-old Conny wants to be treated like anyone else. As a child, he was diagnosed with a mental disability. He says people today have a better knowledge about his diagnosis compared to when he grew up – but attitudes can still be improved. Conny lives in a Stockholm suburb, in one of 12 apartments that make up a home for assisted living. Staff are available day and night, but Conny doesn’t need much assistance besides getting help with paying his bills or occasionally calming down his nerves. He thinks that professionals who care for people with mental disabilities should receive better training.

‘Wouldn’t it be great if we did away with regular schools and only had special schools? Then it would not be strange for someone to go to a special needs school – everyone would be doing it,’ Conny says and laughs. ‘I guess you are not supposed to say that.’ Conny is an early riser and usually the first one to arrive at work. It gives him a few minutes to read the paper there. When the other employees show up he has a cup of coffee with them.

‘Most of them are good but sometimes someone will say things that are insulting to me. Like if someone asks me if I washed my hands after going to the bathroom; I don’t think they would ask a regular person that question. I find it offensive.

He spends most of his free time with girlfriend Caitlin or his friends. Quite often they end up discussing current events or social issues. 31

The Swedish Institute (SI) is a public agency that promotes interest and confidence in Sweden around the world. SI seeks to establish cooperation and lasting relations with other countries through strategic communication and exchange in the fields of culture, education, science and business. SI works closely with Swedish embassies and consulates around the world. For more information about SI and Sweden, please visit Si.se and Sweden.se. ÂŠ 2014 The Swedish Institute Author Rikard Lagerberg Graphic design by Kidneyandliver Printed in Sweden by Edita Bobergs, Falun, 2014 ISBN 978-91-86995-44-7

This booklet is part of a photography exhibition produced by the Swedish Institute (SI). The 14 individuals featured here were all photographed and interviewed in Sweden during 2014. These are their experiences and perspectives on life with a disability in Sweden. What is accessibility? It goes far beyond wheelchair ramps and health care, as many of these life stories show. Ultimately, it is an issue of democracy. Because everyone should be able to participate in society on equal terms.

If you want to have the texts read to you, scan the QR code.