Interview by Eszter Révész
The highs and lows of having a mentally disabled child in the family
In Hungary, disabled people are still a marginalized group in the society, even though almost 5% of the total population lives with physical or mental disabilities according to KSH (The Hungarian Central Statistical Office). In the 21st century, where being different is becoming more and more common, we are still struggling to accept people with mental disorders. The reasons behind this might be the fear of the unknown, or the lack of information. To bring the readers closer to this subject, Klára Tóth (21), a Psychology (at PPKE) and Special Education student (at ELTE), tells us about her personal experiences about living with a mentally disabled person. The conversation touched upon fine details of their everyday lives, the problem of integration, and the perception of otherness. “They know that they are different, but they desire normal in their own way,” she says.
Klára has an older sister, Anna (23), who was born with a mental disability, which affects their lives greatly. What I consider to be truly special about their family is that they are always funny and light-hearted, while their days are hardly ordinary, at least to an outsider. Anna is most easily compared to being a teenager and a baby in one person, who needs constant care. The family’s attitude towards her was always something that I have admired, besides their endeavor to integrate her into normal life. This interview was born out of the sole purpose of bringing these people closer to you and to help you understand their otherness.
“Since we came back to Budapest, after the fall break, Anna has been really missing us, and the way she expresses it, is that she stands opposite to the wall very closely, while repeating that she is missing us,” Klára smiles and continues her line of thought. “People have different perspectives about having a mentally disabled person in the family. Most think about the challenges that come with it, but some consider it as a blessing. In our environment, of mainly Catholic families, we usually think of it as a blessing. Yes, it has its bright side, but many times, it is insanely hard. We love Anna more than anything and our lives would be much emptier without her, but our relationships within and outside the family are greatly affected by her constant presence, her always being the priority and her uncontrollable behavior. On the other hand, it is a blessing, that it is normal to me to be around such people, I am not afraid of them, and I can learn from Anna every single day.”
I: What is it like to have a mentally disabled child in your family?
K: It is like you are always on call, it is impossible to be spontaneous, but at the same time, planning ahead is also much of a challenge. If Anna is in a bad mood, everything changes and you have to adapt immediately. You are always anxious, because her behavior and mood changes in a second. She is like a baby, who has to be woken up, given her medication, asked to eat and drink. When she’s in a good mood, it’s a whole different scenario. She can be really cute, she always says everything as it is, has no prejudice, and loves everyone the way they are. Sometimes, when I face some difficulties, I tell her, she doesn’t answer, but she listens, and no matter what, she still loves you unconditionally.
I: What was it like back then when you were younger?
K: Looking back at our childhood, it was never a secret that Anna was different. Our parents tried to tell us in our language that she is sick, but we always answered: “How could she be sick, she didn’t have a runny nose?” As a child, you look at everyone as equals.
I: Does Anna like to be around mentally disabled and non-mentally disabled people as well?
K: Anna really hated going to a special school, but she really enjoys Damján Tábor, where there are people both with and without mental-disorders. She likes to be surrounded by unimpaired people, she loves it when we sing Christmas carols, or when she is surrounded by people who accept her. When she is among mentally disabled people, she easily gets upset and irritated by them. Actually, in many cases, mentally disabled people irritate each other with their extreme behavior.
I: What can you tell us about people’s attitudes, are they afraid or helpful? How do they usually react, when they see Anna?
K: I think, it depends on the disorder, mainly whether it can be physically seen or not. Usually physically disabled people are more accepted, while people are more afraid of mentally disabled people, not necessarily because they’re rude, but they simply don’t know how to handle them. On a positive note, people have become much more open to Anna in the past few years than they were 10 years ago. Back then, they usually stared at her or quickly turned away. Anna loves dogs and babies, and many owners let her pat their dogs. Nowadays, charities and volunteering are becoming more fashionable, which is good, because many mentally disabled people can be really sweet, especially the ones with no extreme behaviors, like people with Down Syndrome.
I: Are there any events in which they can participate?
K: The selection of programs for mentally disabled people is very poor. They are either not advertised effectively, or there is such high demand for them that the places are filled up immediately. I also think that people with physical disabilities have a better chance to live a full life, while mentally disabled people are marginalized. They have great difficulties integrating into society, mainly due to the lack of possibilities and because people are not used to them, and sometimes, they’re even afraid.
I: Let’s talk a bit about integration, where does it stand now?
K: Integration is reasonably a very hard question, because we lack professionals, and most ideas are hard to put into action. There are several civil initiatives, like Gyermekek Háza, which is definitely a starting point. The interest and attention towards people with mental disorders is rising, as more and more young adults start to learn Special Education. However, there are only a few, who would like to deal with mentally disabled people, and if they do, it is more likely that they are oriented towards children, while the adults are lost and neglected. There are a few kindergartens, where integration is on the agenda, but in reality, a teacher doesn’t have the capacity to give special attention to a mentally disabled child, besides the other 32 children. Another important factor is that not every child can be integrated, some feel more comfortable in a segregated environment. We, normal people, are different too, but they are even more so, and it is challenging to create a system, when everyone needs something different.
In the middle of the interview, Anna quickly joined to say hi to us in the most heart-warming way, and to tell her sisters how much she is missing them. “She is so cute, when she is like this, these are the times when I regret being angry with her,” Klára adds, while still being very touched by Anna’s kind words.
I: How can Anna express her feelings?
K: My dream is to find a solution for this, because psychology doesn’t treat mentally disabled people. It’s very hard to find a way for them to express their emotions, in a way that we can understand. The way, they usually react is uninterpretable and weird to us, for instance, Anna usually gently hits us, when she tries to express her love and happiness for us. We try to live a normal life with her as much as possible, she comes to concerts and different events with us. I think it would be important to realize that mentally-disabled people shouldn’t be hidden at home, but there are awkward situations, which people don’t like to take on. Sometimes, when small children keep staring at Anna, and ask their parents why she is different, the parents’ reaction is usually to silence them. My mum sometimes initiates a small conversation with them, because mental-disorder should not be a taboo, we can talk about it, and we should talk about it.
I: What happens when a mentally disabled child turns 18?
K: The Hungarian Special Education system is complicated and very strict. After the age of 18, a person who is legally incapacitated needs to be taken under guardianship, and cannot be an independent legal person; for example, Anna has no voting rights. One has to go to a court hearing, which is very similar to that of a child’s custody hearing. Despite being her family, we had to do this with Anna and we have to repeat it every year. Guardianship comes with many obligations: we have to collect her bills, report her expenses, and we are not allowed to do certain things, and the decisions are made by the Child Welfare Agency, which is one more aggravating factor in our life.
They can also choose to attend school until the age of 21, but after that they are left to their own devices, or the mother stays at home, and receives a monthly nursing fee of HUF 41,000. There are a few institutions that help provide either employment or care. Anyone, who is incapable of living an independent life suffers, and let’s hope that they have a supportive family who takes care of them. There are some projects that provide housing for mentally disabled people, but these are just starting. Right now, their best option is to have a loving family.
I: Has Anna influenced your life and decisions?
K: Yes, absolutely. Actually, there are many middle-aged women in the Special Education department, who have a mentally disabled child, who would like to seek education. In my experience, people with a mentally disabled child in their family get very committed to this field. Everyone is trying to find a way out and solve the hardships by themselves. I love being surrounded by these people, and I care about them. Maybe if Anna wasn’t a part of my life, my relationship with mentally disabled people would be different, less easy and self-evident.
At the end of the day, we have to do this, we don’t have a choice, and everyone does it to the best of their knowledge. The parents are constantly worried about their children’s future. In this case, it is even more worrisome, because they want their children to live a happy life, but don’t see a well-paved path to it. It is not like with a non-mentally-challenged child, who usually has an established path, at least until a certain age. Anna stays with us forever, she will always have to be taken care of, and it is unlikely that we could live together with the decision of putting her into a state institution. We do everything that we can to give her the best life.
I: I would like to talk about another topic, which is relationships between mentally disabled people.
K: Unfortunately, such a natural thing is also a big taboo in our society, even though they have the same feelings, sexual and emotional maturity, and the desire to belong to someone. It must be really hard for mentally disabled women to realize that they cannot have children, a husband, or a family. Everyone wants to heal their bodies, but not their souls. They desire all these things, many of them have boyfriends, girlfriends, and they have nice relationships. I don’t know exactly what goes on in their minds, but they have affection towards each other. There are some houses where couples can live together, but this emotional side of them is usually neglected. Anna says many times that she can’t have children. They know that they are different, but they desire normality in their own way.