WHEN on Topic: Towards a movement of care

Introduction: Welcome to the new season of WHEN on Topic – I’m Stella Kasdagli and yes, you’re not mistaken, our podcast’s name has changed, as our organisation’s name did! Women On Top became WHEN, but as before it continues to invest in women’s professional and economic empowerment and equality at work – sometimes even outside of it! 

For example, our current podcast series is dedicated to caregiving responsibilities and their equal allocation, coming to you thanks to CAREdiZO.

What is CAREdiZO? It is a new project we are involved in, under the European Commission’s CERV programme, which aims to bridge the gender gap in caring responsibilities by promoting equality practices at home, in micro-enterprises and small civil society organisations (with up to 10 employees).

The project supports family-friendly policies, encourages men to participate in caregiving and highlights the value of caregiving in society generally – in other words, what we have been advocating for all along! Its activities include research, co-creation workshops, training programmes and the development of digital tools, such as an educational game and podcasts, aimed at combating stereotypes and promoting equality. The rest of our partners come from Cyprus, Lithuania and Bulgaria and are currently developing their own podcasts, which you may have a chance to discover shortly.

In our episode today, we welcome a mother and caregiver, Maria Stoupa, who, unlike most of the other people we have spoken to so far in previous episodes, is not currently working.

And the fact that she does not work, as you will hear in our interview, is closely related to the responsibilities she has taken on for her family as a whole and in particular for her son, Dimitris, who has low-functioning autism. So let’s hear what Maria has to say.

Stella: Maria, welcome.

Maria: Nice to be here. Thank you very much for this opportunity to talk with you.

Stella: Would you like to tell us a few words about why you are here today?

Maria: I am here because I am Dimitris’ mother. He is a child with low-functioning autism. He is 12 years old. And throughout this journey, I have met many people, either from the disability movement or the parents’ movement, and I often speak on their behalf.

Stella: Since you mentioned both the parents’ and the disability movements, could you give us an idea of the demands of these movements in Greece at the moment?

Maria: For years, the parents’ movement has been essentially demanding and supporting whatever structures exist to support people with disabilities. There are no public structures.

Stella: Are there no public structures at all?

Maria: Not at all. Everything that exists, which is completely inadequate, is the result of the demands of the parents’ movement.

Stella: What you say is very important, because one of the themes of this podcast and the work we do through CAREdiZO, as WHEN, has to do with the responsibility of the private sector in supporting people with care responsibilities at work. And I think it’s perhaps even more important to continue talking about this responsibility, given that public structures are as inadequate or non-existent, as you mention. Maria, what does caregiving mean to you? When you hear the word “care”, what comes to your mind?

Maria: It’s a kind of protection that goes two ways, a very warm feeling making you feel good, whether you’re giving or receiving. For me, care is my whole family, all of us sharing the same path.

Stella:  Are there also any people, situations, or environments outside your family that you would associate with caregiving?

Maria: Joining the parents’ movement has definitely helped a lot along the way. First of all, it helped me gain strength. I was not alone. There were many mothers, many families, many children and adults with the same diagnosis as my son. And all of this helps you become stronger.

Stella: And receive care.

Maria: Yes.

Stella: How old was Dimitris when you joined this movement?

Maria: Dimitris was five. And at the same time, my daughter was born.

Stella: Who is now seven.

Maria: Yes.

Stella: Nice. If I were to ask you 13 years ago, before Dimitris came into your life, what was your perception of caregiving, what was your experience up to that point, either as a child, as a partner, or at work?

Maria: In general, in my family environment, with my partner and in my relationships, everything was pretty good. Balanced. At work, maybe a little more competitive than I could handle.

Stella: And twelve years ago, Dimitris was born, and you experience a different aspect of caregiving than you might have imagined as being a mum.

Maria: It was a very conscious choice.

Stella: Would you like to tell us a little bit about this process, about this journey?

Maria: This journey started out very beautifully. It was, let’s say, planned. It was something we wanted very much. Our life was balanced enough for this child to come along. My husband and I felt very fulfilled by our lives up to that point. So, this was a step we were looking forward to.

Stella: Can you tell us about Dimitris’s early years, your relationship with him, and how you experienced this transition.

Maria: Until he was 15 months old, Dimitris seemed to be developing typically. He was a child who followed the “developmental milestones” for his age. Then suddenly, at 15 months, Dimitris’s behaviour changed completely, and we realised that something was up. A few months later, we received the diagnosis.

Stella: And how was your journey, your own inner, emotional journey?

Maria: It’s a terrible situation in the sense that the anxiety before the diagnosis puts you in a state of mourning with all the stages. Denial, anger, bargaining, depression, until the time comes to accept it and move on.

Stella: Would you like to share a little more about these stages? Because, you know, we hear about them, we have them in our minds as something that happens either in a specific order, or back and forth, or with a delay in some stages. For example, how did you experience the negotiation stage?

Maria: To be honest, I don’t remember that period very well. The negotiation was whether the child would talk or not…

Stella: That if he talks, then… 

Maria: Yes, that if he talks, then okay, we’ll be fine. But all of this is a bit hypothetical from the moment autism is diagnosed. Autism is a very difficult condition, both in low and high functioning cases.

Stella: Did you work back then?

Maria: Not at that time. I had stopped working to raise my son. So parenthood was very much a choice.

Stella: And when would you place that moment, which was certainly not just a moment, but a path of arrival at acceptance. How did it come about for you?

Maria: Acceptance came when my daughter arrived. That’s when I faced up to my responsibilities. What am I doing? I am bringing a new member into the family. In what environment will I raise this person? How will I help them to be raised within the different family they come from? What if the child has a disability? It’s something you can’t know. So that’s what pushed me to take the next step, together with a very good friend of mine who suggested I join an association for people with disabilities in Chalkida.

Stella: And what did that decision mean?

Maria: I found other people like us.

Stella: Who helped you answer the questions you mentioned earlier, meaning, how can I help this child? What is my responsibility towards him?

Maria: Yes. As well as what my expectations could be.

Stella: Such as? 

Maria: Whether he speaks or not. He will still be autistic. So, I gave other priorities to what needed to be done in my son’s intervention. And so far, I feel very good about it.

Stella: Can you give us an example?

Maria: For example, I am more interested in my son being able to sit down and go out for a family meal, have a social life, and have family friends and a social circle, than him being able to use verbal communication. To be able to eat, to eat with dignity at a table. To be able to sit down to eat with dignity at a table. To be able to socialise so that he is accepted. That is the most important thing of all. And the biggest challenge.

Stella: Is Dimitris’s father involved in this process, has he been involved from the beginning as much as you have, I mean in networking with this community, the other parents?

Maria: No, no. My husband was just behind. But supporting me, all along. I mean, I’ve almost never had to worry about who would take care of my son when I had to be at a general meeting or an event, or anywhere else. He’s always there to support me so that I can achieve what is my goal in my life.

Stella: Why do you think there is this difference in the need you may have had to join a broader movement and a particular community? Between you and him. Why is it that you need it more perhaps?

Maria: There’s always this balance among couples. Like, we always complement each other. We each choose the jobs we like to do. We prioritise among ourselves, in a way. In general, there’s really good cooperation and support.

Stella: And would you say that this was an element in your family life from the beginning, and when the children came along and when Dimitris was diagnosed, I imagine that it changed some expectations and some balances within the family to a certain extent…

Maria: Yes, it has been like that always. 

Stella: Good. I sometimes tell my children that you gain something, you lose something, along the way. What do you feel you have gained from this experience of growing up caring not only for Dimitris but also for your family as a whole, and what is it that you may have lost or mourn?

Maria: You know, the truth is, once I accepted it, my kid’s autism became a milestone in my life. I went out, talked about it publicly, tried to help and get help together, and all that gives me a lot of inner strength.

Stella: Which is a great gain for you and your family, of course.

Maria: Yes, it’s a huge gain.

Stella: What do you mourn on the other hand?

Maria: Hmm… I think I’ve left mourning behind now. The state of mourning I described before the diagnosis has to do with the dreams you had before the diagnosis. For your child. Every parent idealises, thinks about, makes plans for their children, let’s say, that they could become this, that they have a talent there… So, the diagnosis kills all that. Because we have a completely different situation now. Right now, I have other dreams for Dimitris. But I still have them.

Stella: That’s what I wanted to ask you. Sometimes we draw a parallel between caring for children and caring for other people who depend on us, such as the elderly or the sick. And for me, at least, a big difference is that caring for children is accompanied by what you describe, the dreams and expectations we have for the future. Whereas caring for an older person who for example may be ill, may have dementia, or may be reaching the end of their life, is not usually accompanied by these expectations for the future. So, I think what you’re saying is very important, that it’s not that the dreams you have for your child are lost, the dreams change. And I want to ask you if this is true and if these dreams actually give you the strength to be the best caregiver you can be.

Maria: Of course. For example, socialisation is a big deal. The way we behave in our neighbourhood, on our way to school where Dimitris has to greet the whole neighbourhood to get used to this interaction. And it’s going really well. I see the smile on my son’s face, which had been lost for years. Because there had been that moment, I’d describe it as a switch being turned off, when a smiling child suddenly lost his smile, lost eye contact, was no longer interacting, when before he did interact… After many years, I saw that smile again, consciously, and he interacted with me.

Stella: Yes, that is a big deal, indeed. How do you balance caring for Dimitris? You can enlighten us on how different or how similar it is to be caring for other people in your family and your environment. And how do you balance these needs – what’s your daughter’s name?

Maria: Mirela.

Stella: So, how do you balance your needs and the responsibility you felt when you were about to bring Mirela into the world, between the different parts of this caregiving, the specific caregiving ecosystem, which you have to participate in and support?

Maria: First of all, I have to tell you that when people ask me how many children I have, I often say two only children.

Stella: How’s so? 

Maria: Because they have completely different needs. At most parties where Mirela is invited, for example, Dimitris cannot participate because he has auditory sensitivity and cannot be in a noisy environment, which is usually the case at children’s parties.

Stella: Always the case. 

Maria: In many situations, anyway, whether it’s entertainment or education for the child, they have to be done in parallel. And that’s where the good balance comes in that we have with my partner, my husband. Because we support each other so that the needs of both children are met.

Stella: And that includes caring for your partner, your partner caring for you, and possibly caring for yourself. More necessarily than possibly, I hope, it includes caring for yourself and for your social life and friendships. And I don’t know if you have parents or other people in the family that you need to support in addition. So, there are many pieces, and I wanted to ask you how you make this work for you.

Maria: For now, it’s us, the core family. The rest are not in need of our care. We work very well at this. And, of course, we have to say that all this takes a lot of time. That is why I don’t work.

Stella: That would be my next question, which is actually several questions. What would need to happen so that if you wanted to work, you could work? In other words, what would need to happen at the state level, at the employer level, and at the family level so that a mother with a child with low-functioning autism could work if she wanted to?

Maria: The situation in general for mothers who have children with disabilities, unless they work for a very large organisation where conditions may be different or where the few existing laws on support are respected, is that it is impossible to work. I would say that state intervention is non-existent. Honestly, it is really non-existent. There are no support structures. And our children cannot be cared for by just anyone. I know mothers who have given up their careers. I know mothers who, a few years ago, in the last decade before their retirement, were forced to give up their jobs. And that’s because their children grew up and their grandmothers could no longer cope. Recently, a friend of mine who works for an organisation in Chalkida, where we live, and who has two children with severe autism, asked her employer to work reduced hours. There is a law in place. I can tell you she faced incredible opposition from both her superiors and her colleagues.

Stella: Just because of her request to work reduced hours?

Maria: The request was finally approved. Indeed, at this moment. But why did she have to go through all that psychological pressure? Her life is already very stressful on a daily basis. In other words, there was a hostile reaction all over.

Stella: Yes, I can imagine. I do understand this, unfortunately. Sometimes when discussing issues that concern work, we forget that this kind of pressure, this exclusion, doesn’t just affect the mental balance or the enjoyment of daily life. In many cases, financial survival depends on it as well. So, whether I can continue to work for an employer with the care responsibilities I have at home and get paid for it depends to a large extent on how my employer will treat me and my caregiving responsibilities.

Maria: And it’s worth noting that we live in an age where everyone is chasing numbers – targets… A mother whose child may be going through, for example, what I went through for long periods of time with sleep disorders. You’ve been up all night, and this has been going on for a long time, and you can’t catch up on your sleep. You are tired. You are psychologically exhausted. How much can you perform? How much can others support you in this? Your colleagues. How understanding will your employer be – who has targets to meet?

Stella: You mentioned earlier that this might be easier in a large company, which may have certain policies, even some that go beyond state policies, or at least may be obliged to give more weight to complying with such policies. What happens in smaller companies, and I understand from your position so far that you consider it more difficult for a mother or a parent, in any case, with a child with a disability to get support in a smaller company? I wonder if you see any opportunity there. Perhaps there is more flexibility, more human contact in the work environment, or is it just more difficult?

Maria: In my experience so far, the boundaries are very clear. Either you perform, or you go home. Alas, the 13-hour workday is currently being introduced. What flexibility are we talking about? People are working longer hours every day anyway. And now it’s becoming legal. I think it’s completely hostile.

Stella: Is it particularly hostile to mothers, and if so, why?

Maria: Because it hardly leaves any time away from your role as an employee, or any time for a mother. Which is again the responsibility of the parent. Everything comes down to individual responsibility. And that is completely wrong. My child’s education, yes, it’s my responsibility. But shouldn’t there also be state support or responsibility? Responsibility rather than support.

Stella: I wonder, though, why this is so different for a father than for a mother. I mean, we’ve been talking for so long about whether a mother with a disabled child can continue to work, and we’ve talked less about whether a father can. Maybe that’s because… Well, obviously someone has to work to support the family. But how easy is it to take it for granted that this someone will be the father?

Maria: How much less are women paid? I mean, it’s still the case that women’s salaries are lower, even in 2025, and often they are paid less for the same work. Let’s not forget either that workplaces that employ more women usually have lower salaries.

Stella: So, you’re saying that who gets to work is ultimately a financial decision.

Maria: A woman’s salary is considered to be less significant.

Stella: If you were to think about the ideal small employer – leaving large companies out of the equation for now… If you were to think about the ideal small employer, what should that employer do or not do in order to support, more or less effectively but certainly with high standards, a mother, and in particular mothers with a disabled child.

Maria: What could they do? The targets could be more realistic. Often the targets set are too ambitious… But how could it all… I don’t think it could work. I mean, I’m trying to get my head around it. I don’t think so. Everyone is chasing profit. I don’t see who would show this flexibility or understanding and put profit aside or in second place.

Stella: However, having an employee work reduced hours based on what is established by law for reduced hours does not necessarily harm profits. It’s more about whether the employer is willing to adopt a different working model and listen to the needs of employees, which change over time. Assuming that we are talking about for-profit businesses, employers who are for-profit businesses, so they need to be sustainable. Let’s take that for granted. How can a for-profit company become more welcoming and supportive of people with caregiving responsibilities?

Maria: I find that very difficult. I can’t get to see the picture. But I can see how the situation could be different if the state took responsibility.

Stella: Tell me more about this. 

Maria: I can think of a simple example. My son’s school is the only one in the area. It is a special school and does not operate on a full-day program. Is there a job that ends at 1:15 p.m.? Where do I have to be to pick up my child? There are no daycare centres. There are very few creative activity centres, public or private, which do not even meet minimum needs for proper adjustment. There is no support. Everything comes down to individual responsibility.

Stella: I imagine you know many mothers who are involved in the parents’ movement and have children with disabilities. What percentage would you say would like to continue working if the conditions allowed?

Maria: All of them, I think. 

Stella: And why is it so? 

Maria: Why? Because, in addition to the financial comfort that an extra salary will bring to your household, and the insurance coverage, it is a way of taking care of yourself. To grow as a person.

Stella: The reason I am asking…

Maria: Or just… –excuse me– …to simply work. When caregiving is not shared it becomes an oppression factor. 

Stella: How can caregiving be shared?

Maria: It is shared when many people help. But this role, socially, falls exclusively to women. How many times have we heard the expression “Where was the mother?” In other words, it is always, always –how can I explain it– that caregiving has a gender.

Stella: There are two reasons why I’m asking this. For one, sometimes we assume that women prefer or are comfortable with not working, for various reasons. The second reason is that we talk so much about the demographic issue and the aging population that we forget that there is this huge potential workforce that wants to work, I believe that all of them would like to work, want to work, and are not given the opportunity to work because the conditions you described do not exist. And taking a cue from what you said about caregiving having a gender, I wanted to ask you whether, over the years and from your experience caring for Dimitris, your own perspective on gender roles has changed, in relation to the stereotypes we are discussing, in relation to the treatment and mistreatment that women still suffer today in Greek society, and whether you see things differently than you did 13 years ago?

Maria: I’d say definitely not. Nothing has changed in that regard. I strongly believe in gender equality. I believe that women should be supported so that they can work, have a social life, and enjoy their role as parents. Because parenthood is a beautiful journey. And I want to share something that has stuck in my mind, every time I’ve heard it. I’ve heard expressions that have hurt me deeply. The worst was, and I’ve heard this more than once, “You’re lucky, you have a girl, she’ll take care of her brother.” In other words, many people around us have decided on my daughter’s life, they have concluded that she must take care of her brother and be responsible for him, something I had never even considered for my child.

Stella: And they wouldn’t have come to the same conclusion if the roles were reversed. That is, expectations wouldn’t be the same if it were for a boy.

Maria: I wouldn’t think so, no. 

Stella: Or there would be no expectations…

Maria: I think society has decided that all of this, caring for someone in need, someone with special needs, is the responsibility of the mother. It’s the responsibility of the woman, the sister. And that’s unfair.

Stella: And the daughter.

Maria: And the daughter, indeed. She is given a role that she has not chosen. A role I would never want her to take on, because it’s not her responsibility. What must be done for Dimitris and anyone else like Dimitris should be a responsibility of the state.

Stella: You mentioned that it is women’s right to enjoy parenthood. And I wonder if we recognise the same right for men. Whether we allow men the right and opportunity to enjoy their own parenthood.

Maria: I think we do now. And it’s something that a large percentage of them want. There are certainly stereotypes in society, but we are definitely evolving. We are evolving well. Some are, at least. Of course, all this has to do with the balance within the family. Based on respect, you function as…

Stella: A system. 

Maria: Right, as a system.

Stella: Maria, where do you get care from?

Maria: Overall, from many sources. I have a very good relationship with my siblings. It is very supportive to have people who are close to you. I have a very good relationship with my husband. Friends. All that. In general, of course, I am a very independent person.

Stella: As is often the case with women.

Maria: Yes, it’s true. It’s a trait of mine too. At the same time, I won’t hesitate to ask for help, and I always know that there are people around me who are there and will help me when I need it, when I ask for it.

Stella: Maria, thank you very much for this conversation. We wish you, your partner, Dimitris, Mirela, and all the mothers and fathers who are striving for something better for their families and their children in particular, all the best.

Maria: I hope that the whole perspective on intellectual disability will change and that other things will evolve, including in relation to the employment of people with disabilities. I feel that I represent not only myself but also all my friends who share the same struggles every day. Thank you very much.

Stella: We thank you as well.

Conclusion: What did you think of everything that we discussed with Maria today? What other actions do you think CAREdiZO could develop to bring us one step closer to equality, in and out of the workplace? We are here to read and listen to your suggestions, comments and ideas: follow us on social media, send us an email, leave a review on Spotify, come and meet us atWHEN Hub inthe centre of Athens and let’s keep the conversation going… to make WHEN –and CAREdiZO– even better for the benefit of everyone, women and men.