Of young and older siblings with or without a disability

They vie for the affection and approval of their parents, they argue with each other and yet no other relationship is as close and able to endure as much as the bond between siblings. Regardless of whether it is a connection like the Klitschko or Gallagher brothers have, sibling relationships run deep and in the case of Liam and Noel can also withstand repeated disagreements. After all, the same blood flows through their veins. But what happens if your brother or sister is a person with a disability?

Parents often walk a fine line between overprotecting the child with a disability and overburdening his or her sibling. Needless to say, this is not an easy situation because the child with the disability often inherently needs more attention. At the same time, parents also don’t want to neglect the sibling.

While there are many support groups for parents who are in this particular situation, many groups and projects are also dedicated to the brothers and sisters of people with disabilities. Since 2017, the "Geschwisterzeit Rhein-Main" project (English: Time for Siblings) covers the greater Frankfurt area. The project targets the siblings of children and adolescents with disabilities, chronic and/or life-shortening diseases.

"We offer a variety of recreational and outdoor learning activities in the shape of weekly meetings, day trips and leisure activities that encourage siblings to leave their everyday lives behind. There is a Sibling Club that meets once a week and we also feature a monthly themed Siblings Day. This year, we were able to carry out several leisure events with the help of our project partners and private donations," says Nina Vietzke, a degreed social worker and one of two experts, who are a vital part of the project. Her colleague Joshua Wolter explains why this service is aimed at siblings. "The project is intended as a preventive and supportive measure for affected siblings. We believe that it encourages siblings to focus on their own needs and desires and spend time with other children and adolescents, who are in a similar situation."

Growing up is already a difficult feat. Growing up with a brother or sister makes things even more complicated. After all, sibling rivalry, jealousy, and conflict are just as common as getting along again and wreaking some havoc together.  

Nina Vietzke and Joshua Wolter also observe these typical conflicts and clashes among siblings in their work. However, children who have a brother or sister with a disability have a wide range of emotions added to the mix. "We believe children/adolescents can be concerned about a prevalent sense of (in)-justice as it relates to both their family and society," says Vietzke. Needless to say, emotional ambivalence and role conflicts due to a sense of duty for family are also issues. For example, children sense that their parents are worried and are considerate without being asked because they don’t want to be an extra burden. Concerns like "is it OK for me to be mad at or jealous of my brother or sister" are also difficult for children. Vietzke says that another aspect that can play a role is "a strong sense of ownership and sharing when it comes to both information about the disease such as cause, prognosis, and implications, as well as a desire for responsibility and duties in the family."

"Geschwisterzeit Rhein-Main" is there to help families navigate these choppy waters. "The feeling of not being alone in a certain situation can help ease the worries of families. The same applies to the degree of openness with which the subject of disease and disability is broached within the group, both as it pertains to our work with the children and the parents communicating with each other," says Wolter.

When people come of age, the relationship between siblings is much deeper than any other relationship in a person’s life. Regardless of whether the brother or sister has a disability or not – you grew up together, know each other’s faults and strengths and ultimately that’s what you are familiar with. "Many characteristics of sibling relationships are the same as those of siblings without disabilities: sibling rivalry, love, spending time together, and being there for each other are important hallmarks," explains Vietzke.

Depending on the severity of the disability, the sibling relationship might also be difficult even after the siblings have grown up. The questions you have as an adult about your responsibility towards your brother or sister can haunt you and are entirely different from those you had when you were a child. In hindsight, some people might also realize that they overextended themselves emotionally when they were children or adolescents. At least that’s how Sascha Velten felt. Due to a lack of oxygen at birth, his brother Marcel has severe physical disabilities. Sascha Velten realized 30 years later that he was overwhelmed by this situation, even if he never felt this way when he was a child. Five years ago, Velten reached a point where he would have liked to share his situation and concerns with like-minded people. But back then, there were only a few available options for adult siblings.

Right before his parents turned 60, he had a mental breakdown, panic attacks and sought out the help of a therapist. He felt a great need to interact with other adult siblings who are familiar with his situation without having to explain himself in great detail. He met Amir Tawfik online. Together they founded the erwachsene-geschwister.de-Initiative (English: Adult siblings). "This is an initiative by and for adult siblings of people with disabilities. You can find us online and in real life. We tell our stories on our blog to show other siblings that they are not alone in their situation and with their feelings," Velten says about the Initiative’s mission. In addition to the website, services also include a Facebook Group called "Unter uns – Erwachsene Geschwister" (English: Between us - adult siblings) as well as regular roundtables in many regions of Germany and an annual sibling meeting in Cologne. "In these venues, we discuss issues that affect us as nondisabled siblings, as well as actual concerns about our siblings," Velten explains.

"As an adult, I have to deal with problems that I wasn’t able to grasp as a child. The situation is very different. I might have my own family and a job now and areas where I also have to assume responsibility. My parents are getting older, which prompts me to reflect on my role as a sibling. What type of responsibility am I willing to assume someday? What do my parents expect of me? What does my sibling expect? These are questions we adult siblings have to grapple with, and frequently this happens on a very subconscious level. Some of us get sick from it without understanding the connection to the sibling aspect."

Similar to what happens at "Geschwisterzeit Rhein-Main", the sibling meetings or online group also show that it helps to be among like-minded people who understand your situation despite their own individual and unique circumstances. "The first thing you notice in our meetings is that many other people share the same concerns and have the same questions as you do. People who understand exactly what you are up against because they are in the same situation and don’t need a big explanation of your setting." Needless to say, this helps to process your own problems or issues and you can ask other participants for their advice based on their own experiences.

There are also other aspects that clearly overlap with those issues you had as a child when it comes to dealing with each other and the role of parents. Depending on the severity of the disability, the care situation later on in life becomes a major issue. And that brings us back to the subject of overprotection and overburdening, as the co-founder of erwachsene-geschwister.de can also attest to. "It is very natural for parents to be driven by their parental care instinct. And that’s a good thing. However, this can also take forms that cause problems. Parents should ensure that children with disabilities can become independent, grown up and don’t rely on their parents. After all, when the parents are old and suddenly no longer able to do as much as they did before for their child, it‘s too late."

Velten had a frank conversation with his brother and parents to discuss what he is able and willing to do – and what he isn’t able to do. Since then, he feels better, even if his honesty was very hard to take for his brother. Nevertheless, Velten recommends for families to always be open and honest and talk about subjects like long-term care and/or the living and care situation, the parent’s will and mutual expectations. It is important for parents to understand that the brother or sister of a sibling with a disability cannot take on the same responsibilities and duties they have assumed because of their parental care instinct. After all, "disabled adults are also adults. Treat them as such, no matter what impairments or challenges they might have." Having said that, it is also important for the healthy or non-disabled sibling "to acknowledge my feelings, recognize them and maybe question them, regardless of whether they commonly have a negative or positive connotation." Velten adds that every relationship between siblings is "unique and can sometimes be more or less loving, amicable or sometimes even problematic."

Given all of the knowledge he has today, Sascha Velten would like to give his younger self the following advice: "Try to understand your feelings. Try to get a sense of what you truly feel and what you want for yourself. Set yourself free from any responsibility. You are a child and you are not responsible for your siblings or your parents. You are responsible for your own happiness."

Having said that, it’s not as if his brother didn’t have a special place in his life or that Velten was missing something in his childhood. "I wasn’t bothered by my situation as a child. I gladly did what I did and it all felt good. It’s not until today – thirty years later – that I am able to give myself this advice."