Sexual Health

2. Individual freedom, legal security and self-determination

2.2. Knowledge about yourselves

Photo: S. Kühle-Hansen

Identity is an important aspect of human life that is often affected by social characteristics such as:

• Gender 

• Ethnicity 

• Group membership 

• Family

Identity development is a dynamic process starting in childhood and continuing throughout life. Developmental characteristics are important for self-identity of children and youth's with ID. Therefore, we should provide a particular focus on supporting the construction of their identity (6, 8-11).

When supporting identity construction in PWID, we highlight the differences between being a child, a young adult and an adult. One element of this is to talk about the impact of diagnosis and disability on the everyday life of the person. The child also needs an explanation why they need help in kindergarten, school and as an adult, in their own home. An understanding of who they are should preferably be an integral part of the way they live their daily life (6, 11, 12).

There are some myths regarding individuals with ID such as “they are eternal children” or “ones that need compassion”. Today, there is an acceptance of the fact that people with ID must be respected as people with equal rights to other citizens, whatever their particularities and interests are. 

Everyone needs hope and support of their dreams. At the same time, it is important to have realistic expectations. Youth with an ID need support to develop an understanding of their own identity. Discussions about relationship and friendship may be; “When you’re older you can find a friend or a boyfriend”, “You can do nice things together. You may go to the cinema, swimming or to a cafe”. If their expectations about marrying and having children are not realistic, the subject should be discussed with care and kindness. Discussions may be "It is not a good idea to have a child when you lack resources to take care of them", "How can you have a good life without children", "How can you be a good uncle or aunt to children your sibling has?”

Activities to support PWID build knowledge about themselves:

Let them feel free to discover the world and themselves. Allow them to experience different situations, without too much help. Let them try to solve everyday situations with minimum support, e.g. say, "Go and find the food and pay for it at the cashier". Let them experience how to ask for help - a tool that may also develop their language. 

Help your child to build his or her own network in the family. Leave them alone with family members. Let them find their own way to be together and to receive feedback on who they are. To become familiar and feel safer together, ask your relatives to spend time with your child. Ask, “Can s/he play …. together with you?”, “Can you go to the kiosk and buy …. I will meet you when you are ready”. 

Talk about experiences and spend time on talking about memories. Ask your child to create a photo-album e.g. on an iPad and bring the storybook to school. They may also use it together with friends. It may be easier to talk about their personal story if they have pictures that support storytelling. It may be easier for their network to understand the child/youth when they look at pictures of the family, relatives, activities, holiday and so on.

Create picture/text books for those who cannot speak. It may be a scrapbook and a weekly picture-calendar on their mobile or iPad. Look at the pictures together and talk about people, places and events they have met the same day/week. Talk about things that happen in their community and they see in newspapers or other media, as well as new books friends talk about. 

Some PWID lack the ability to ask questions. Teach them to ask about the interests of others e.g.  “What do you like to do?”, “What do you like to eat?”, “What do you like to do in your free time?”, “What do you like to do together with your family, with friends?”, “What games do you play on your computer?” Also, teach them to speak about their own interests (12, 13).

Teach them to present themselves in a nice way: “My name is Hilde and I'm 12 years old. I go to Minthouse school and I like to make photo albums”. Work on it in a secure home environment before they practice their new skills on others.

Talk about how they can greet friends, acquaintances and new people. Talk about how we use different ways of greeting when meeting certain people. It may be nice to distinguish between good friends and random acquaintances. They may give a hug to people well-known to them, while in the case of people in more distant relationship we only nod or shake hands. Children who hug everyone may continue with this when they are older. Teach them early on how they can ‘read’ different situations. Create some rules.

Talk about human feelings with your child, how they feel in different situations, how they express their feelings, how they recognise different feelings:

• Am I kind, helpful, angry, impatient, happy? 
• What do I see when I look at myself in the mirror? 
• Do I feel like another person when I put on makeup?
• How do I feel when I am together with my best friend?
• Does my friend love me? 

Social roles are part of everyone’s personality and identity. We take different roles in different situations. Talk about what role they have and are able to take in their lives, e.g. “What role do I have when I feed the dog?” “- when I wash up?”, “- when I play games with my nephew?” Talk about how they manage their social roles, e.g. “Who am I at school?”, “How do I manage to take care of my friends?”, “Who am I when I go shopping, how do I manage it?”and so on. 

Talk about their disability: “What is the reason for my disability”, “What kind of brain damage do I have?”, “What is most difficult about my disability?”, “What is the best about my disability?”, “How do I experience my disability in different situations?”, “Do I feel that physical exercise works for me?” 

Each person with disability is different from all others with similar diagnoses. Talk about the diagnosis e.g. “How do I differentiate myself from others with the same diagnosis?” Talk about other people. “What do they need help with?” “You and your sister/brother are not similar, what do you think about that?” Some have progressive illnesses and get weaker over time. “What do you think about it?” “What is important in your life at present?”

There is an infinite number of topics you can talk about if you speak in a calm way, using simple words about a topic. These conversations may help you to be more acquainted with thoughts your child/sibling/client has. You may also find topics mentioned in this chapter in the modules of Transition to adulthood and Aging.

_{Drawing: Henriette 13 years.}