Chapter 23 of the book “La personne polyhandicapée – 2e édition : La connaître, l’accompagner, la soigner”. P. Camberlin and G. Ponsot. Coll. Guide Santé Sociale. January 2021. Dunond: Malakoff
Chapter written by Scelles, R.
Mediation/Education :
A sibling including a person with multiple disabilities is first and foremost a sibling. Supporting siblings means considering the person with multiple disabilities as a brother or sister. The dynamics of a sibling family and the function of each of its members are linked to a number of factors (what they experience with each other, the events they face, the missions their parents (in)consciously assign them, what each sibling imagines about his or her history and ancestry). The brotherly bond continues throughout life (childhood, adolescence, adulthood).
1. This chapter looks at some of the most frequent and/or problematic feelings and relationships between siblings. It’s important to note, however, that it’s impossible to account for all the complexity and diversity of siblings’ experiences.
(a) Shame is a feeling frequently experienced by the brothers and sisters of a person with a (poly)disability (shame of themselves, shame of their (poly)disabled brother or sister, shame for their (poly)disabled brother or sister). Being able to talk about this feeling of shame among children and with adults helps to transform this shame into something less traumatic, gives them greater confidence in their ability to protect themselves, and in their ability to call on others to help them protect themselves.
(b) People with multiple disabilities, like their brothers and sisters, often feel guilty for not being the ideal child and for making their parents sad. This feeling can lead to depression, aggressive behavior towards oneself or others, and extreme focus on controlling “bad thoughts”. Siblings can sometimes feel the guilt their parents feel. This feeling is reinforced when parents deny themselves all pleasure and devote themselves solely to the (poly)disabled child, as children interpret this parental behavior as a way for adults to punish themselves for their faults and make amends.
(c) Dealing with one’s own aggression and the aggression of others is central to sibling bonding. Some aggressive games are said to be structuring, i.e. they are part of the development process of the psyche, helping, for example, to learn to distinguish between oneself and others, to control certain behaviors, to oppose others, and so on. In situations where one of the siblings is living with a (multiple) disability, this process can be disrupted by the excessive intervention of adults in sibling relationships, as well as by the asymmetry that exists between the (multiple)disabled person and his or her siblings. Aggressive structuring games are to be distinguished from abuse within siblings. Abuse can occur at any age within a sibling family. They are often little discussed within the family or with professionals. If ignored, they can lead to behavioral or internal disorders (e.g. depression). These disorders can be brought to an end with the help of therapy, or by talking about them within the family, for example.
(d) In siblings with a (poly)disability, the competitive-aggressive relationship between brothers and sisters is often replaced by a “helper/assisted” relationship. Adopting the role of caregiver can be a source of satisfaction for the sibling who takes on this role, but it can also prevent him or her from establishing horizontal relationships with other siblings, and in particular with the disabled sibling. The wish to no longer take on the role of caregiver can be an opportunity for the maturing of relationships within the siblings, if parents support the evolution of these relationships and do not interpret it as a sign of disaffection.
2. Developments and stages in the life cycle of siblings and individual siblings can have beneficial or negative effects on the siblings’ experiences:
(a) The moment when the younger child becomes more successful (from a developmental point of view) than the older child in a (poly)disability situation acts as a confirmation of the younger child’s “non-disability” and as a “revelation” of the disability, forcing recognition of the importance of the older child’s disability situation. While they may benefit in terms of protection, older people with (multiple) disabilities can sometimes feel hurt or unrecognized as people who are also growing up.
(b) The worsening health situation of the person with a (multiple) disability, but also the choice of place(s) of education and living, can affect siblings. It’s vital that an adult can help them formulate their questions and emotions.
(c) Adolescence is a pivotal time for sibling relationships. The guilt of not being disabled, but also the possibility of questioning the mission entrusted (consciously or unconsciously) by parents can play a role in avoiding a sacrificial position and not giving up on building one’s own path.
(3) Creating the right conditions for people to talk about their suffering, express their emotions and be listened to helps make them bearable. At every stage of life, siblings can be and become a resource. Participating in a discussion group, talking as a family over a book or film, taking part in family interviews to facilitate and support family exchanges, taking part in associative activities, or sharing experiences can all help.
Knowing the positive functions of siblings helps to avoid hindering them, and gives all children the opportunity to talk about disability, ask questions and express their emotions. For more details, we invite you to read the chapter written by R. Scelles (2021).
