Story about two sisters and experience of growing up with a sibling who has an intellectual disability.
This article is the common version of a story told in the Europe for us magazine about siblings of people with intellectual disabilities.
This article is a Q&A which reflects on the relationship between Inge and her sister Esther. Inge and Esther have both answered the questions.
Inge Volleberg is the Researcher at Inclusion Europe and Coordinator at EEG. Inge was 3 years old when Esther was born. Esther is now 21 years old.
Esther works in a coffee shop as a barista. She worked there for five years. Esther is diagnosed with down syndrome.
Inge and Esther’s set of questions
Sisters’ relationship
What was it like growing up with your sister?
Inge: We had a lot of fun when we were kids. We got along very well. We made up our own games, or changed the rules of existing ones so that Esther could play as well. We were like two peas in a pod. But other people always wanted to point out our differences, that was sometimes very difficult. Esther was my sister, we were both kids, apparently Esther was different, but I did not really understand that as I had no one to compare her to. We do not have any other siblings. So, I was always a bit confused when other people would treat her differently, or when they would really focus on our differences.
Esther: We had a great connection. We played a lot together, we joked around, and laughed a lot.
Was it difficult to understand each other?
Inge: Not at all! I could understand her just by looking at her. We were, and still are, so in tune with each other. My parents often joked that I was Esther’s ‘translator’, because other people had difficulty understanding her. First because she did not speak much at all (her first nickname for me was ‘A’ because Inge was too difficult, that ‘A’ stuck around for a few years), later because she had difficulty articulating clearly. But I always knew what she meant, so I would often ‘translate’ for other people, including our parents. We would joke around that we could read each other’s minds. Esther, for example, always knows how I feel. She sometimes picks up on it before I have even realized it myself.
When we got older it became a bit more difficult to understand each other, because our lives changed so much. Esther had difficulty understanding what university was for example.
Esther took courses at high school in cleaning and cooking. Topics she still knows more about than I do. But still even when our lives went in different directions, we are still very close and understand each other well.
Esther: No, we understood each other very well. I might have down syndrome but that did not bother us at all. Inge understands me the best, and she helps me to understand things around us.
Have you always had a good relationship with your sister since the beginning?
Inge: Yes, I cannot remember a time that we were not close.
Esther: We always had a great relationship, we did a lot of things together: playing, watching movies. We are each other’s best friends.
Did it worsen or got better over the years?
Inge: I don’t think our relationship has gotten worse or better over the years. It has changed a lot, but not in either direction. When we were kids, we were just kids. We played together and we laughed. I think this period when we were small children was the period when we were the most similar.
The older we got, the more our lives changed in different directions. Not only did we go to different schools, I went to a mainstream high school, while Esther attended a special education high school. I also moved out at the age of 17, while Esther still lives at home.
Our relationship is still as strong as before, but the dynamics have changed a lot. Esther has been working at her job for already 5 years. She has friends and a boyfriend. Since I moved out, there is a bigger part of her life that I am not a part of, and the other way around.
When we were younger, we were a big part of each other’s entire world. This new distance or separation has brought fun things as well, we now call every week to talk about how our weeks go. Chatting to just catch-up, something that is maybe very normal for most siblings, but for a long time we never did or had any reason to do it.
Another way that our relationship has changed over the years, and again not for the better or for the worse, is my role as care giver. From around 12 years old, I became a care giver. For example, I had to stay home because Esther could not be home alone, or I had to go to Esther’s school to bring her a fresh set of clothes, etc. I never minded the care giver role, but it changed our relationship.
When I moved out, my role as care giver decreased as I was not there to physically support my parents nor Esther. I was living too far away to help, except for the support I could provide over the phone.
Now, I live closer to my parents, and I am able to give extra support from time to time. This support does not have to be anything special, but it can mean the world to Esther (for example bringing her when I go to a party) or to my parents (for example having a sleepover with Esther, so that they can go on a holiday).
Esther: We always got closer, and our relationship got better and better, but it was sad when Inge moved out. I missed her a lot. That was a big change. We did not see each other as often. But our relationship is still very good. We are still very close.
What was the most difficult thing/moment to overcome with your sister?
Inge: I guess the most difficult thing for us to overcome was how the world treated us. Other people always focused on how different we are and treated us differently. I hated it when people would be mean to Esther, or when she would get ‘positive’ ‘special treatment’ because she is someone to ‘pity’. We did not understand why people behaved that way.
One time Esther and I went to the supermarket, and Esther offered to carry the groceries. An old lady passed us on the street, and started berating me that I was ‘so mean that I let my poor sister carry all those groceries’. Afterwards, Esther asked me why it was wrong that she wanted to carry the groceries, I had no answer for her.
Esther: Inge is normal and does normal things, like going out with friends to parties. I don’t have that, and I would like to do those things, like partying or going to the sauna.
It is sometimes difficult to see how different our lives are, and that Inge can do things I cannot do. I sometimes wish I had no down syndrome and that I could be normal as well.
What was the easiest thing/moment to overcome with your sister?
Inge: We have always managed to do things together. When we were younger, we would both have our own little rules while playing together. Now still, when we play any kind of boardgames we have standard rule changes so that Esther can join and enjoy the game.
I have always enjoyed adapting things to Esther so that she could fully enjoy them as well. In museums, I would make up stories about the art we saw and would craft our own little guided tours.
Similarly, Esther would do the same for us. When she cooks, she always makes sure to think of everything and everyone. Not only if people are vegetarian or allergic, but also what they like or dislike. These inclusive adaptations have become natural to us.
Esther: Spending time together, we love to do things together. We have a lot of similar hobbies, and we laugh around a lot. We love playing board games, going to watch movies, we were both part of the scouts.
How is your relationship with your sister now?
Inge: Very good! As I mentioned before, we call each other every week to catch up on how we’ve been. We have great conversations about work, friends, what we did on the weekend, and much more!
Now that I live close by, I try to visit my family at least once every three weeks and then I love to go to the restaurant where she works to have lunch while she is working.
We love going to the cinema together, going shopping, or playing board games. We also have a shared love for musicals and Disney. A couple of years ago we went to London together to see a musical in the West End together. This year we’re going to Disneyland Paris.
Esther: Very good, we call every Wednesdays. Then we share what we have done that week, I ask how Inge’s cats are doing for example. I really enjoy that. Inge also visits us regularly and sometimes I sleep over at Inge’s house, that is a lot of fun.
I also recently went out with Inge and her friends, that was a lot of fun. We had some drinks, we danced, and on our way back we got a cheeseburger.
How and where do you see yourself and your sister in 10 years?
Inge: I plan to keep living relatively close by Esther so that I can visit her frequently. Hopefully I can live in a place where Esther can visit by herself using public transportation. I imagine that we are still very close and spend lots of time together. I can even see us at one point in the future live together in a co-housing arrangement. Just because it would be a lot of fun.
Esther: I will be married for a long time, and Inge as well (laughs). I think so at least. I will also buy a house in Meerssen or Maastricht (The Netherlands), but nothing too expensive.
Hopefully with a swimming pool, open kitchen/living room. No pets. I think Inge will still live in Leuven (Belgium), but she would have bought a house. I hope that we will see each other more often and that I can visit her by train alone.
What is the thing that you are the proudest of your sister?
Inge: I am proud that she is such a happy and strong woman. She enjoys life to the fullest and she is eager to learn. She is unapologetically herself.
Esther: I am very proud of Inge, because she is such an amazing sister, and she is always there for me. I can always depend on her. Inge is also very good at her job, because she is a good listener.
How important is your sister to you?
Inge: Esther is everything to me. She is my best friend and my dearest sister. She is the most important person in my life. I cannot rationally explain why she is; she just is. She just has my unconditional love. We have always been together and always been there for each other.
Esther: Very important, because Inge is my number 1. She supports me, she helps me to learn new things. Like how to make a phone call, how to vote in the elections, but also what to do when you have a hangover (take paracetamol and drink water).
Inge’s set of questions
Esther’s impact in Inge’s life
How has your life changed because your sister has an intellectual disability (in terms of career, freedom, communication, education, independence, life perspective, etc.)?
Of course, I cannot answer this question with certainty as I have only lived for 3.5 years without a sister with an intellectual disability. But I will answer the question of how my life is different from my peers’.
As I mentioned before, when we were children, we thought we were very normal, but people around us treated us differently. We did not have an easy childhood, we lived in a village where there was a lot of bullying. Especially with Esther being so different, we were often the target. Another unexpected consequence of having a sister with an intellectual disability was that my parents did not realize that I was ahead in school, because of the difference between Esther and me. I was always the “smarter one”. So, it took some time before my parents realised that I was actually really bored at school and looked into the possibility for me to skip a grade.
During high school I started to realise that I had a caregiver role and that most of my peers did not have such a role. I noticed this by little things. If we wanted to make plans, they sometimes did not even have to ask their parents whereas I always had to check. Someone would always have to be home as Esther could not be at home alone. Or I got called out of school because Esther needed a fresh set of clothes at her school. Or I did not know the real rules of a boardgame because we always played with our own version so that Esther could play along. I also noticed that I had little common sibling experiences, my peers would tell me about sisters stealing clothes or going together to a concert.
Furthermore, as I grew more aware of my role as a caregiver and as I was so young, I lost track a bit of who I was. In the village I was also known as “Esther’s sister” as she was much more well known. I struggled a bit with this, because of this I decided to move to the other side of the country and study in Amsterdam. There I was able to discover who I was without having to take care of my sister. People got to know me as me and I got to share about my sister on my own terms.
Having Esther in my life has also influenced my choice of career. Like I said before, when I went to Amsterdam, I wanted to distance myself a bit and I started studying international relations. But throughout my studies, I was frustrated with the lack of attention disability issues received. So more and more, I have focussed on the topic myself whenever I could through my academic papers to bring more attention to it. This is when I realised that advocating for disability rights is really important to me.
Now looking at the future, I am making plans while always taking Esther into account. I fully realise that I will have and want to have a role in Esther’s life. And as my parents grow older, I will provide more and more care. I have always looked at this very neutrally as I have always realised and accepted that this will be part of my future. I am looking forward to what the future will bring for both me and Esther.
Esther’s independence
Do you think that Esther can get married and have a successful marriage and build a family?
Yes, I fully believe that Esther can get married, whether she wants an official marriage license, a wedding and party, or both. And I am certain that she can have a successful marriage like anyone.
I don’t think it is in her future to build a traditional family. But she will have her partner, me and my partner, and other friends and family.
Together we are a family.
Do you think that Esther can get a career and earn her own money?
Looking at the current national policies in the Netherlands for people with intellectual disabilities it is very unlikely that Esther will earn her own money and instead will be dependent on state benefits.
However, the job she currently has at the restaurant does offer opportunities to learn new skills and grow professionally.
Now she will have a training on being a hostess and she is hopeful that in the near future she can do the barista training.
In that sense I am confident that she will have a meaningful career path in her future.
Do you think that Esther can be independent?
Of course, in her own way. I don’t like to look at it as a black and white thing as it is more of a spectrum. She is and can be more independent in some parts of life than in others. I think in the parts that mean most to her, she is and can be independent.
For instance, she has a job that she enjoys, she can travel to her work and to her boyfriend’s independently, and she can grab a coffee on her way to work if she wants to. She can cook whatever she fancies. And we are hoping to teach her other routes with public transportation so that she can travel independently to more places.
However, there are of course parts of her life where she might want to be more independent than is possible. For example, she will be dependent on others for going on holidays as it will not be very likely that she can go abroad by herself.
Inge’s advice
What is the relationship advice that you would give to people who have siblings who have intellectual disabilities?
Accept each other for who they are, do not place your goals, wishes, and dreams unto them. They might find joy in other things and find different things important in life.
So instead of comparing each other or being sad about what could have been, focus on the strengths you both have.
Esther’s set of questions
Career
What job are you doing now?
I work in a restaurant. I have multiple tasks: cleaning tables, polish cutlery, and every day I have to check if I work as a server, barista or cook.
I like the barista role the most, because I can make different kind of coffees like latte or cappuccinos. I have still a lot to learn.
Recently I made a drink with way too much whipped cream. And you have to be careful what kind of soda a customer orders. That is why I like the barista role, because it is challenging, and I can learn new things.
We also get trainings at work. I have already completed the trainings in facility management and personal hygiene.
Now I will do the training to be a ‘hostess’. Hopefully afterwards I can do the training to be a ‘barista’. I am really looking forward to that.
What is the best part of your job?
Talking to the guests and helping people, that way I can chitchat with people. I also really enjoy being challenged and learning new things.
Do you want to keep doing your current job or do you want to try another job?
I would rather stay with this job, because it is really nice, and I enjoy it a lot. I have very sweet colleagues as well. I already know three people from school and two from the (field)hockey class.
What is your dream job?
In a restaurant! I am at the best spot, this is my home, I never want to do anything else.
Love life
What do you like the most about your boyfriend?
He is handsome, nice, sensitive, strong, funny, and cute. He is very good at things, and he arranges a lot of things. I like that we can do fun stuff together, like going to a concert, going to the city. He is also very sweet and caring.
Are you planning to get married?
Yes! He has asked me to marry him. I said yes. I really want to marry him because I am super in love.
Why is marriage important to you?
Because we are head over heels for each other, and marriage shows that we are serious about each other and that we really want to be together. Till death do us part.
What are your plans after marriage (in terms of having children, living together etc.)?
A honeymoon, we do not know where to yet, maybe Paris. We also want to buy a home, but we are going to need some help decorating.
Life experience
Have you ever felt like you were different from your sister (in terms of rights, education, love, jobs, etc.)?
Yes, I am different than Inge, because I have down syndrome.
Inge can go on holidays when she wants, she can move to wherever she wants, and she can drive a car.
All things she does very well, but I cannot do these things, and that sometimes hurts me.
I always have to go with our parents on holidays, because I cannot stay home along for so long. And I can also not go by myself on holidays.
Inge supports me to be more independent and go on holidays that I want.
A couple of years ago, the two of us went to London because it was my dream to see Lion King the musical on West End. It was amazing.
Have you ever wanted to be like your sister?
Yes, I want to be more like Inge sometimes. I think Inge is beautiful, I am beautiful as well but with down syndrome.
I would also like to be freer like Inge is and to have more freedom.
So, I can decide for myself when I go on holiday and with whom. And to live where I want to live.
Just to have more freedom.
But I am possibly moving out soon, there is a place where I want to live. They are renovating it now, but hopefully it is done soon, and I can move there and be a bit more independent.
Did you have any difficulties when growing up?
I got bullied during primary school. They stole my glasses, tugged at my hair, and pushed me from the stairs. That was very stupid and difficult.
How did you overcome the difficulties that you faced? What were the solutions?
I tried to ignore them, but they did not stop. Then I went to the teacher to tell her that they bullied me and that I wanted them to stop.
The teacher went to talk to them, but it did not really help. My mom did something good, she got very angry at the kids.
When I was 7, I changed schools and that helped a lot. My new classmates were kind and sweet. The new school was very nice.
The bullying was very mean, but it is okay, because it is in the past. I like to look at the future.
High school
How were your high school days?
It was a nice high school, we had a lot of different subjects: math, English, history, carpeting.
We also made sandwiches and deliver it throughout the school for everyone.
We had school proms and carnival parties. That is also where I met my boyfriend.
Did you enjoy high school? If not, why?
Yes, I enjoyed it a lot. I was in the school choir, that was a lot of fun. We also had music classes, I played keyboard.
What do you wish you learned more in high school?
I wanted to learn more about maths and reading comprehension.
In the last years of high school, they stopped teaching me those courses which was really a shame.
I don’t know why they stopped. I also wanted to learn more about handling money.
Advice
What is the relationship advice that you would give to people with intellectual disabilities who have siblings with no intellectual disabilities?
Just have a lot of fun together, spend time together. It is very important because it gives more freedom and happiness.