Receiving information or even a suspicion of your child’s possible disability is overwhelming. Our family has experienced this twice. It can be a huge shock for any parent and for the whole family. It is something you really cannot prepare yourself for. A phrase future parents often hear during pregnancy is “A boy or a girl, as long as it is healthy”. Whether it is question of a newborn or an older child who then isn’t “healthy”, families drift into a state of considerable confusion.
This situation causes sorrow, anger, fear, and disappointment, because your dreams have been shattered. You may feel lost and irresolute, because of the sudden change in your plans and lack of vision for the future. How to move on. How to cope with life with a child with a disability.
Eventually families will learn to live in their new reality. From my own experiences, I wouldn’t say that you will accept this situation or adapt to it. Somehow you just find yourself managing your new everydaylife. Is there any other choice? Gradually we families turn into fighters, because we constantly have to defend the rights of our child with disabilities. When meeting other parents to children with disabilities, it becomes clear to us that we are not alone in our situation.
Often parents or other family members of children with disabilities talk about how easy it is to meet with other families in similar life situations. We feel connected immediately. We do not have to explain ourselves. We seem to understand each other from the very first words. Without any common history. Without ever having met with each other before.
Many disability organisations have started from such encounters. Families have had a crucial role when establishing them. Families finding each other have joined their forces and become advocates. Since many decades they have initiated and run associations which have become significant social actors. First locally, then regionally and nationally and finally they have joined into global movements.
The task of a caretaker and organiser and coordinator of help and support falls to the family of a child with disabilities. It is demanding and long-lasting. No matter what kind of disability, childhood and youth last for almost twenty years. It is a long career. During that time the need for various kinds of help and support is continually changing. Even in highly developed welfare states, the social and healthcare systems which people with disablities come across with, operate as very specialized and separate systems. Professional people representing different services stay strictly in their silos, never meeting each other.
Since more than thirty years, I have described in a picture the network of help and support providers surrounding the family. It easily consists of dozens of individual professionals. The family of a child with disabilities, parallel to their caretaker role, has to take responsibility for applying for, organizing and coordinating various forms of help and support. Families who have a child with a disability describe their experience to get services as a fight and dealing with endless bureaucracy. You learn to live with the disability itself, but the paperwork is exhausting and drains your strength.
When children with disabilities then grow into adulthood, they can become self-advocates. It is their turn to become active in disablity organisations. Nothing about us without us. This is the slogan that has been in use in the international disability movement since the UN Convention on the Rights of People with Disablities was first adopted in 2006. People with disabilities and their families had a significant role in drafting the convention.
But people with different disabilties are different. Not every adult with a disability has the ability to become self-advocate. Some only can express themselves in a very limited way. Some have difficulties to understand their living environment. Some experience difficulties in communication and in being understood. Some experience difficulties in understanding the meaning of used terminology or words. Their family members’ support is very much needed.
Such is often the case when we talk about people with intellectual disablities, especially those with high support needs. People with intellectual disabilities are not a homogene group of people. They are all individuals like any people, with individual needs, with individual challenges based on their individual skills and abilities.
Intellectual disablity means limitations in cognitive functioning and skills. These limitations are in conceptual, social and practical skills – such as language, social and self-care skills. Because of the limitations they develope and learn slowly or differently. People with intellectual disabilities can be dependent on other people’s constant help and support to understand others and to be understood. Without help and support their own opinion could not be taken into account.
People who know them well are needed. People who have spent time with them to have learned to understand them. People who have spent time with them to know their needs. People who have spent time with them to be able to communicate with them and to be able to interprete them.
Most often these people are the families. Mothers, fathers, siblings, uncles and aunts who have been living together with them. They have common language, even when there doesn’t seem to be any known language at all. Their communication may be based on facial expressions, gestures, sounds, signs, single words or sylables or a combination of all these and yet, they get understood. Over the years people just learn to understand each other even without any spoken language.
Families are important when it comes to communication, to understanding the needs and to self-expression of people with intellectual disbilities. Families are essential in the fight for their rights. Families are essential for “nothing about us without us” to become a reality also to people with intellectual disablities.
We parents of adults with intellectual disabilities regularly face situations where our role is being questioned. Our role as an expert, a defender of rights or a recipient of information. People say that we interfere too much in our childrens’ lives and that we protect them. People say that we are violating their right to self-determination.
Need for their family members’ close presence in their lives does not end in the adulthood of a person with intellectual disabilties. It is so because of the very nature of their disability. It is essential that families are involved in the lives of their children with intellectual disablities, even when they reach adult age. No one knows our children as well as we do. We, families know our children best and are the best experts in their help and support.
The knowledge and expertise of families is valuable. This knowledge should be in active use and utilized. Instead of underestimating, depreciating or questioning the role of families, it must be strongly promoted and appreciated. Working structures must be created and developed for it. Wide co-operation is needed so that we can all together work towards our common goal, the good life for our loved ones.
Our role as family members and advocates in our childrens lives needs to be recognised and acknowledged. Our place as active players and stakeholders in disability movement needs to be recognised and acknowledged. The status of families and family members as activists needs officially to be confirmed and permanently strengthened.
Only then we can guarantee that “nothing about us without us” concerns equally all people with disablities. Equally also those who learn slowly or differently. Equally also those with high support needs. Equally also those who themselves may not have ability to defend their human rights.
JYRKI PINOMAA 