Towards an Adulthood with a Difference

Towards an Adulthood with a Difference

The chapter focuses on findings from a qualitative study of 36 disabled Icelandic young adults aged 16-24 years old, their parents and some of their friends and teachers, on their achieving adulthood. The study explores situations and experiences of disabled individuals that lead to social discrimination; how they see themselves and how they are perceived by parents, friends and teachers. Further, on what young people with very different disability labels have in common, how they experience their situations differently, and how such differences may be related to different social situations and decisions made by their parents.

All the young people are seen to have significant disabilities, but their disability labels vary across most disability categories. Their background was also as varied as possible across socio-economic categories, and they lived in urban and rural sectors. These people can be described as the first integration generation in Iceland, because they are the first disabled people to grow up with inclusion and normalization as the law of the land.

This study used qualitative methods largely influenced by grounded theory and hermeneutics (Glaser, B. and Strauss, A.L. 1967) and placed the work within the interpretivist paradigm. (Ferguson, D.L. and Ferguson, P.M. 1995) The primary method for collecting data was interviews. This authors professional and personal experience over the past 20 years as a university teacher and a researcher of sociology and disability studies, and as a single mother of a son with significant impairment, inform and focus the research. Additional information was gained from workers within the local and state welfare services, from statutory laws and regulations, from high school principals, staff from the Ministry of Education and the Ministry of Social Services, and from documents.

Three Portraits

The interpretation of the data gave rise to a metaphor that helps frame its’ interpretation. It is the metaphor of the young disabled people of the study, as traveling along two roads, or wandering about like nomads in the wasteland in between; The highway travelers (Group A) 14 young disabled people, are seen to travel along side the rest of us, a few in the express lain, more along the middle of the road, but most at a slow pace. Another set of travelers (Group C), 15 young disabled people, is seen to travel along a much narrower special lain for labeled people. Finally, the nomads (Group B), 7 young disabled people, are seen to wander about in the wilderness between these two roads, sometimes aiming for the one and sometimes the other, but belonging with neither.

On the highway

Ólafía is 23 years old, small and skinny. She has thin, dark hair, and is letting it grow long. She lives with her mother, a semi skilled worker, in a small town. Her older siblings have moved away from home. Her mother describes Ólafía thus:

She is sometimes uncomfortably frank, “calls a spade a spade” without concern for… We all do that in my family…we all say straight what we mean… She is fully aware of the fact that she is retarded…I have always taught her that, but also that that is OK.

She has the label cognitively disabled. She attends the special education class at the local upper secondary school part time even though she graduated last year, works part time as a volunteer at a local firm, goes to “disabled sport”, uses summer camp for disabled children and youth, and the local respite service. Now she has a support family where she goes every other weekend. She has a paid support person to help her participate in social activities a few hours a month, and a few typical friends with whom she loves to spend time. She has been included in general education from preschool until upper secondary school, where she attends a special class, and fully included in her local community from birth. Thus she, supported by her iron willed mother who picked from available special and general services what she thought might be of use to her and her daughter, and paved the way for the inclusion of other kids with cognitive disability labels in general school and in her community.

Ólafía likes to talk. Her mother says that “when she is happy, she talks all the time if you let her, she is like the rest of the family in that. But she can also sulk or be quiet as a mouse”. Ólafía has a big vocabulary and appears to love to be the center of attention. She laughed when she told me that she has a big temper, which sometimes gets her into trouble. Ólafía denied being an adult; “I’m not a grown-up, not yet”, but she expected to become a grown up very soon. Her mother is teaching her to deal with practical things such as housework and the paying of bills.

When Ólafía was little her mother, backed by her friends and family, was determined that Ólafía should grow up knowing both disabled and typical children. Her mother managed to persuade the local community to provide her with some therapy at the local preschool.

For her first years at school, she attended general school in the morning and went to her old preschool in the afternoons while her mother worked. After her first years at school, where she repeated the beginners class twice, she was moved to a different school. There she was enrolled in a general class, but with children two years her junior. She was pulled out into special education on a regular basis to the point that some days each week, she spent more time in the one-on-one special education than in her class. She liked her school and loved her special education teacher, a woman who worked with her for most of her compulsory school years. She also said she liked all her class teachers in the compulsory education schools. Ólafía learnt to read at the age of nine and count, but it took her much longer to learn to write. Now she uses a computer. Her mother explained that as Ólafía learnt to control herself better, she got to accompany her classmates more. She changed schools yet again and went to a small compulsory education school in stead of entering a much bigger school with her former classmates after the 7th grade. Ólafía liked her new school and found new friends there. She said that she liked studying Icelandic language, cooking and woodwork, but hated geology. “It is stupid, I have to go out in the rain and pick up stones on the beach”.

Ólafía was confirmed with her classmate at the local church and invited family and friends to a party.[1] In her early teens she developed her first deep friendship. Her best friend, who was also labeled cognitively disabled, had a life threatening disease. They used to watch video and TV together and hang out in each other's homes. The friend died when they were both in their teens. The sorrow touched Ólafía to the core, but supported by her mother, she learned to grieve and heal.

A string of support persons, paid companions a little older than Ólafía, went through her life. She befriended some of them, but not others. These young people went with Ólafía to the cinema, bowling, the Pizza Hut, and to a number of events for disabled youth. In her early teens, Ólafía became almost fully included in all classes and school activities. Four of her typical classmates became her very special friends; they phoned each other, they included her with other friends, and looked out for her. This opened new social possibilities for Ólafía.

Ólafía expected to join her friends and classmates at upper secondary school, but the special education teacher at the upper secondary school had other plans. He did not believe in inclusion and liked to have a firm structure in his work. This was a big disappointment to all of them. Ólafía asked:

I am the same [as I was], I have not changed, so why cannt I be with my friends?

Her mother said:

The teacher tells me she [Ólafía] is happy at school, but when she is at home she protests strongly against going there. I also feel the change... This teacher treats me as if it [her schooling] is not my business. I am told that it is he who is the teacher, not me...I asked if she could not occasionally attend a class with her old classmates. The teacher refused on the grounds that my Ólafía is not about to take the exams with those classes...He wants to structure his teaching like that and he believes that "they fit best with others like them".

Ólafía explained her special class and the upper secondary school like this:

I find the class fun, good to get to know more friends. […] but I know these kids, we were always at [summer camp for cognitively disabled children and adults] in the summer, but the boys are boring, they are always teasing me, and one boy hits me all the time. He has always hated me.

She had no friends in the special class. When I asked her about school friends, she said that Gunnar was her best friend [her best friend from the compulsory school]. Then she said that it was really difficult at the upper secondary school to meet with him and the others from her old class.

They are here, but I never see them…when I see them, they must go. This is not right. I miss them.

Gunnar said he missed her too, and that he is unhappy that he is drifting more and more out of her life. He said that "Ólafía has become more of an outsider since we started upper secondary school". Still, Ólafía finds things to do at home and in the town during the days. She participates little in the evening activities of her age peers since she joined the special class.

She, her mother and friend all agree that her upper secondary school graduation is one of the highlights in her life. She went with all the other graduates up on a big stage at the school. She was dressed in an expensive and elegant black dress, high heeled shoes and wore a beautiful gold pendant around her neck. Ólafía confessed that she was nervous and shy, but after she had received her certificate and shaken hands with the headmaster, she turned and gave her mother a triumphant “thumbs up”.

Her dream is to move away from home and get into a general college for a year, (which she did a year later). In the future, she said ”I hope to live by myself, in a house that is all mine”. I asked if she might get lonely in such a house all by herself. Did she want to live with someone, a man or a woman? She said that she does not want to live with another woman “because that is not possible”, and she doubts if she wants to live with a man.

She wants to carry on working at the place where she is now volunteering. Later she wants to move to the city, go to the bank and pay her bills, be near her sisters, uncles and aunts. She wants go to the National Theatre, dine at good restaurants and have pizzas. Ólafía follows national politics on TV. She voted at the last national election for a political leader, “because he is sweet… but my mother says he is a jerk.” Like most people, Ólafía hopes to live a long time.

I don’t want to be old, I never want to die, I am so healthy. You see I am not handicapped, I am just retarded. […] It is not fun to be handicapped, there are too many handicapped in my school.[2]

Ólafía is firmly embedded in her local community even though her adult status is somewhat in the margin of the highway. Her mother is proud of her. She said:

I have always said that Ólafía is the best I have had…and I think that everyone who gets to know her discovers that she has an unusually strong self image...

Ólafía’s mother plans to get her a flat, but she also dreads the separation. Ólafía has become a source of support for her mother.

Nomading in the Wilderness

Margrét is 21 years old, a upper secondary school student. She is tall and slim and could be mistaken for a model. She is deaf, speaks fluent sign language and is also able to lip read and talk (somewhat unclearly) with her voice. Because of her parents work, she has lived abroad. She has a younger sister, and an older brother who has left home. Margrét lives in a little apartment in her parents’ house.

She was a year and a half old when her parents discovered that she was deaf. This “changed everything” for them. They set out, as soon as possible, to learn what they could about deafness. Her mother enrolled in a course to learn sign language and mastered the basics. Margrét’s father had much greater trouble with learning the language. He felt really uncomfortable trying to make his daughter understand him. The result was that even now he gets his wife to interpret what he needs to say. Margrét talks to him and when he does not understand, she writes to him. Shortly after Margaret’s diagnosis her father took on more responsibility at work to improve his prospects and pay. The wife’s opinions and superior knowledge mostly prevail in matters to do with the education and support for Margrét.

Margrét started in a general daycare center when she was two years old and had a pedagogue with her who spoke sign language. She was a lonely child. There were no deaf children her age anywhere near her. She went both to the school for the deaf and for a few hours each week to her local school for hearing learners. She was not very happy in those years, she said: “It was hard. I belonged nowhere...

There were problems in the family due to the fact that Margrét and her father could not communicate properly and misunderstanding and mistrust grew between them. The family was moved abroad for awhile when Margrét was in her early teens. There she went to a special deaf class in general school. The students spent much of their time in the special class and some time in general class. Her classmates in the special deaf class had been together in that class from when they started school. It was hard to get into the group. She was rejected.

I was looking forward so much to this school and then I had problems in my new class. The kids called me names and laughed at the Eskimos in Iceland. I felt ashamed, I felt really bad, I wanted to die.

Finally, she got a boyfriend and that changed a lot for a while. She wanted to move away from home at the age of 16, and took a job as an au pair with a deaf family in a different town. She felt unhappy and left her job.

She started to smoke and drink alcohol and tried to fit in with a group of hearing kids that were a little older than her. Next, her parents sent her to a foreign boarding school for deaf students. Here, at the age of almost 17, she found herself accepted by students and teachers. All the teaching was in sign language and many of the teachers were deaf.

I was exited and scared when I started [school]. I had a kind of shock, I had never seen so many deaf people before and I did not know if I could manage. I waited outside my classroom, was afraid to go in…then I opened the door and saw all these hands swaying in the air. I met a deaf teacher. This was a new experience and it made me so very happy.

At the end of the school year Margrét returned home. The situation between her and her father had not improved. Margrét said she became filled with anger at her father. She asked:

Why could he not bother to learn sign language, why did he talk to my sister on the phone all the time and tell me to study, when there were just the two of us…?

She felt lonely and terrible. She got involved with kids who used dope, began to drink a lot and use hashish and other substances. After a time, she became very depressed and tried to commit suicide. Two years later she stopped using drugs. She began to think more about her life and realized that "I needed bigger and bigger doses of dope to function. I got scared."

After working at this and that she started school once again. She is now studying with hearing students. She said that she “quite likes it”. She uses an interpreter in class. She worries that "the interpreter may disturb the other students". She also complained that the interpreters sometimes “get it all wrong”. Margrét is not optimistic that she will graduate.

Time and time again, I do not understand what the interpreters are signing.

Margrét is still very alone. On the one hand, she said she wants to be with hearing people, “because I want to get to know new people and hear new points of view”. On the other hand, she said she feels herself drawn to the deaf group because “we all talk sign language, a beautiful language, our mother tongue”. She complained about some of her deaf companions: