Growing up with a sibling with dwarfism: perceptions of adults non-dwarf siblings

This study was conducted by Tharina Guse and Clare Harvey, 

from the Department of Psychology, University of Johannesburg, South Africa in 2010. And although this publication has now some years, is a highly relevant theme and we now present the highlights of this study here. We requested the full publication to the authors that kindly shared it with us, but due to scientific journal publication rights, we can not this study it in full here. Nevertheless, we will now present the highlights of this study.


ABSTRACT


Despite the fact that society seems to have become more tolerant towards human diversity, skeletal dysplasia still carries some extent of stigmatization and negative stereotyping. There seems to be a lack of knowledge regarding psychosocial factors associated with skeletal dysplasia, specifically as it relates to interpersonal relationships. Since the negative attention directed at individuals with dwarfism may also have an impact on family members and family relationships, the aim of this qualitative study was to explore adult non-dwarf siblings’ experiences of growing up with siblings with a skeletal dysplasia. Thematic analyses of semi-structured interviews with four adult non-dwarf siblings confirmed both negative and positive effects. These effects were evident in childhood and continued into adulthood. Positive outcomes seemed to be more profound for the participants during adulthood.

Disability

In 1990 dwarfism was classified as a disability, but there is disagreement about whether such a label is appropriate. According to Kruse (2003), individuals with dwarfism do not view themselves as physically disabled, only merely as bodily different. Glover (2006) argued that disability implies a failure or limitation in functioning, and then only when it impairs the capacity of the human being to flourish. He further stated that Achondroplasia should not be viewed as a disability since the functional impairment resulting from the condition can mostly be ascribed to a social reaction.

Skeletal dysplasia can be seen as more than a medical condition. It is often accompanied by stereotypes, myths, and legends, culminating in name-calling, teasing and staring which may have an impact on the non-disabled child’s experience of the sibling relationship.

Having a sibling with a disability may influence the development and possibly also the childhood experience of non-disabled siblings.

It seems that growing up with a sibling with a disability could have both positive and negative outcomes for children and their families, and, as King (2007) states, could be experienced as both a blessing and a burden.

Participants
The participants in this research were four adults, non-dwarf siblings of siblings with dwarfism who resided in South Africa. They were all Caucasian and grew up in suburban, middle-class families

Procedure
Qualitative data was obtained through a semi-structured interview schedule, conducted by the second author. Questions were open-ended, which allowed respondents to express their thoughts and experiences in their own words.

Results

As suggested by existing research there seem to be both negative and positive aspects related to growing up with a sibling who has a disability. Moreover, both facets were still evident in the participants’ adult lives and could be described as the experience of being an adult sibling of an individual with dwarfism.

Negative aspects related to growing up with a sibling who has dwarfism

  • Feelings of isolation - "They remember me as Frank’s brother, they don’t remember me and my name and that kind of got to me a bit".
  • Resentment and anger
  • A lack of support and information - "Maybe just to talk to somebody that’s got . . . that has relatives that are small. Maybe that could have made a difference. To see how other people are feeling."
  • Increased stress because of public reaction lead to a feeling of “being different” - "I think at the beginning it was strange, they [people] kind of looked, stared.
    Nowadays I don’t see it anymore."
  • Experience of stress in the family - "They [parents] kind of treated him like a baby. We always had fights and we still have fights, me and my mom, about the way she treats him."; "There was always a constant thing over our heads, ‘When’s the next operation? When’s the next bone going to break?’ or whatever. So that was, that was difficult."
  • Parents’ differential treatment of the sibling with dwarfism - "I don’t think I necessarily would have been allowed to do certain things that he did."

Positive aspects related to growing up with a sibling with dwarfism

  • A positive reaction from friends - "They loved them [her siblings with dwarfism]."
  • Experience of a close and unique sibling bond - "If he was normal, normal size and everything, it would have been different. But it’s not. I’m thankful for that."; "Gave you a type of pedestal at times, as well. ‘My name’s Tom’ and ‘Oh, you have the short sister’. It’s a bit of a boost as well as everybody loves Jane to bits."
  • Strong sense of family unity
  • Open communication from parents promotes adjustment“And it was a bit of a shock for my parents and then they just took the decision, no well, she’s a normal, healthy little baby and let us bring her up as normal as possible”.

 

-----

The adult experience of having a sibling with dwarfism

Current negative aspects related to having grown up with a sibling who has dwarfism

  • Anger towards parents - "Mom will still phone on his behalf for interviews . . . that kind of makes me still a bit angry."
  • Concerns about their siblings’ future - "I always just pray that they’ll find someone who will love them for who they are."
  • Concerns about siblings’ physical and emotional well-being - "I’m scared to death that my brother’s going to die young because he’s so sick.
    You know these are things I worry about."; "You hurt and you don’t want him to be different and you want him to be able to do what everyone else does and you don’t want him to be stared at."
  • Concerns about own childbearing

Current positive aspects related to having grown up with a sibling who has dwarfism

  • Feeling proud and positive - "They take a positive interest in her as a person as a whole, being small and coping. Living in a big people’s world so to speak."
  • Acceptance of dwarfism: normal but different - "I don’t really see my brother as a dwarf. Really. I just see him as short; he’s shorter than the rest."; "The fact that they are small . . . that’s just part of who they are. I can’t imagine them anyway different."
  • Making meaning: acceptance of diversity, appreciation for life and advocacy - "Having a brother with Achondroplasia like Grant, it teaches you a lot about yourself and about life, that a lot of people don’t get to experience in a way that I have because of him."
  • A close and strong sibling relationship

 

Recommendations

1. Siblings of children with skeletal dysplasia should have ample opportunity to obtain information and support from both knowledgeable sources and parents whilst growing up. This may help them to cope effectively with the negative aspects reported, specifically as it concerns stereotypes held by society and resulting stigmatization.

2. Parents of children born with skeletal dysplasia should be introduced to a balanced perspective of the longer-term outcomes for the family as a whole, particularly as it relates to positive family interactions. Since parents’ constructive engagement seemed to have contributed to the positive outcomes for the participants of this study, enabling a balanced perspective may be beneficial for family functioning and the psychosocial adjustment of all siblings.

In conclusion, it seemed that growing up with a dwarf sibling was, and continued to be, unique and meaningful for the adult participants in this study.

 

In the front image are two Spanish brothers, Mar and Lucas (that has achondroplasia). Mar writes a blog about the life and challenges of her brother living with achondroplasia. You can read the blog here (in Spanish)