1. ”Hey, look at me!” Interaction and well-being in the lives of deaf and hard-of-hearing children in Finland Children as experts of their everyday life Maria Kaisa Aula, Ombudsman for Children in Finland 26.9.2013 ENOC conference/workshop 13.9.2013 Maria Kaisa Aula 1

2. Children as experts on their own life Photo: Pori Centre for Children's Culture What things in life are in order? At home, at school, at freetime What things make you glad and happy? What could be improved upon? What would you like to influence? www.lapsiasia.fi 2

3. HEY - LOOK AT ME! Interaction and well-being in the lives of deaf and hard-of-hearing children in Finland (2012) Interviews: 90 children (3 - 17 years) and 24 parents Deaf researcher who knows Finnish sign language survey to the rehabilitation centers at main hospitals consulting with linguistics research Funding from Ministry of Education and Culture Partners the Finnish Association of the Deaf, the Finnish Association of Parents of Deaf and Hard-of-Hearing Children Making the voice of children heard inside the sign language, deaf and hard-of -hearing community Inform people working with children about the situation of deaf and hard-of hearing children Strengthening the cooperation between the operators involved Recommendations to Finnish decision-makers (education, health rehabilitation)

4. Deaf and hard-of-hearing children about 1000 in Finland of them 320 child Cochlea implant (CI) users (2013) Sign language has official status in our constitution Most children study at their local schools. Different languages and ways of communication 1) Deaf – sign language users, native sign language 2) Deaf – CI – implanted, sign language as second language 3) Hard of Hearing – CI speech language users Some are born deaf Some became deaf later www.lapsiasia.fi 4

5. The best interests of the child ?! Medical – doctors, therapies, rehability: focus in ”the ear” Social – communication, family and their resources: ”life in practice” Minority perspective: Sign language and culture of the deaf Disabled/Special support - perspective Lots of tensions between the perspectives and professions Maria Kaisa Aula 5

6. Rights of the child approach right to best possible state of the health right to own language and minority culture rights of the disabled child right to education right to play and rest - to be a child right to life and development to the full potential at your own pace right to participate and have a say right to get information www.lapsiasia.fi 6

7. Children have their own perspective ”I’m deaf but I have a CI.” ”I’m either deaf or hard-of- hearing, it depends on the situation.” ” I don´t want to fix my hearing, because this is who I am,you know, myself!” (a boy 11 years) ”My hearing aid is quite new and often I forget to put them in in the morning” (a girl 10 years) ”I wish I wasn't hard of hearing” Girl, 10 “I´m just some deaf girl to them” Maria Kaisa Aula 7 “

8. Parents Siblings Peers Hobbies Good food Learning Playing Respect Positive atmosphere Have a say Information

9. The need to be understood and to obtain information To be able to sign as much as I like and not try to hear. To be allowed to just take the devices off and sign away. (Boy, 9) It would be nice if they (the family) knew how to sign. At the moment, nobody understands what I am trying to sign. It would be nice if I could sign in the morning, when I have woken up and don't have the devices (implants) on yet. (Boy, 12) I feel like I don't receive quite as much information as my friends, since they can hear better. (Boy, 15) Maria Kaisa Aula 9

10. Children commented often on the benefits of bilingualism (speech and sign language) I like to use speech to make sure that I got it right. I don't always understand everything in sign language, so it's nice when the teacher talks as well. But I couldn't cope without sign language, I want to use both languages at the same time. (Girl, 16) I can hear the teacher through my FM device, but I still have an interpreter, just in case. (Boy, 15) Maria Kaisa Aula 10

11. What about free-time and friends? Feelings of loneliness are usual I don't hang out with the other kids in the neighbourhood that much, since I don't always feel up to trying to listen. My next-door friends do understand that I'm hard of hearing, but they can't always take that into account. There are games, in which I can't make out what is said or I get tired of trying to hear, so I don't join in. All my friends are at school, I never meet them in my free time. (Boy, 13) I would like to have more friends. I have less and less of them every year. If I had more friends, I would like to talk to them. That would feel good. (Girl, 17) Maria Kaisa Aula 11

12. The right to communicate and to use your own language Who decides on the language of children? --- the psychologist said that learning to sign will impede the child's verbal development (Parent, children aged 2 and 4). --- the doctors didn't seem pleased with the parents' decision. We were pretty much left alone to face the fact. No peer support or anything like that was offered (Parent of 4-year-old). Maria Kaisa Aula 12

13. Recommendations Hearing, sign language and rehabilitation professionals must consider the individual and practical needs of deaf and hard-of- hearing children and families: children as a whole person Diverse initial information when the child is born as deaf or hard- of-hearing: informing on the benefits of bilingualism (speech and sing language) Respect for the parents culture and decisions Flexible dialogue that facilitates cooperation across organisational and diagnostic boundaries. Flexible methods of communication: Support for both sing language use/learning and spoken language hearing conditions (school needs adjustments in acoustics, small groups etc) Peer support and peer contacts for children are very important! Look at the children! Maria Kaisa Aula 13

14. We organized a workshop for all the actors in the field - many of them met for the first time. The tensions within the fields of hearing and sign language must be defused further and converted into a resource for cooperation in the interests of deaf and hard-of-hearing children and families. Maria Kaisa Aula 14

15. Ask children themselves! Eelis and Juha belong to the young advisers group of the Ombudsman for Children in Finland Their message: ”Talk about your life as deaf or hard of-hearing persons. By sharing your experiences, you can inform and influence decision-makers. ” Maria Kaisa Aula 15

16. Thank You! www.lapsiasia.fi -> english language has more informationwww.lapsiasia.fi More information mariakaisa.aula@stm.fi irja.r.seilola@jyu.fi www.lapsiasia.fi Maria Kaisa Aula 16