Can We Imagine Living Together?

Five of us were there together today, and somehow the conversation moved towards imagining a community or a home for people with schizophrenia, schizoaffective disorder and related psychotic experiences. We came to this when one member shared that he had been having dreams about an old-age home, and this had been frightening him. He had also been seeing advertisements on Instagram about old-age homes, and this was making him feel scared and paranoid. He stays at home but mostly remains in one room, does not go out and does not meet his parents. He is very scared of them. Sometimes he hesitates to eat because he believes that his parents may put poison in his food and want to get rid of him. He feels deeply frightened. Listening to this reminded me of how families can also have a very difficult time living with someone who has schizophrenia. They have to invest so much emotionally and socially in understanding their child, and sometimes, when they become overwhelmed, they may wish that the person would just go somewhere and not come back. And then the person living with schizophrenia can begin to feel unwanted, unloved and as though everyone wants to get rid of them. For many of us, there can be this very deep feeling that nobody really wants us as we are. Nobody really accepts us or loves us. Even our own family can begin to feel like a place where we are being pushed aside, where people want to get rid of us. This feels like such a core experience of living with schizophrenia.

Another member shared about her loneliness. She is separated from her husband and lives in a different city, and she had recently moved to another city with her son. Her son was going away for a few days, and she was worried about having nobody to take care of her. She was scared that she might have a panic attack and not have anyone around. So she had contacted a help agency and arranged for someone to be around her during that time. She is scared and lonely. She feels that she has nobody to talk to. Her mother does not speak to her anymore, and she feels that nobody really cares what will happen to her. At the same time, she does not want to burden her son or make him become her caregiver, so she keeps many things to herself. But in this session she was able to share some of her raw feelings and experience some of her deepest and most truthful emotions: that she is lonely, that she has nobody, that she is scared to live in this world, and that she does not know where to go, what to do or how to be in this world. She feels that she has nowhere to go. She also spoke about the lack of mental health advocacy in the country. In other places, people come out publicly and speak about living with schizophrenia and do advocacy work, but here there is so much stigma and such a lack of openness and freedom. She spoke about the loneliness and the fear that one day she might die and nobody would even care.

Another member shared a similar fear of being alone in the world. She sometimes worries about losing her mother and sister. Her sister works and is away during the day, while she spends much of the day with her mother at home. When she imagines a future where her parents are no longer there for her, she becomes frightened that she will not be able to survive. She feels emotionally dependent on them and does not know how she would live on her own. She does not know what would happen to her. Another member shared that sometimes, when she has a panic attack or a breakdown, she desperately wants someone to be there with her, physically present, so that she does not have to be alone. But at other times, she wants to be completely alone. Even when her husband comes and stays with her, she sometimes needs space and asks him to stay away for two or three hours. She does not want anyone to come too close to her. She can become scared when someone comes too close and may push them away. She also does not always feel understood or respected in her life, and so sometimes she wishes that she could simply be on her own. There can be such an intense contradiction in this experience: we want someone to be there when we are falling apart, but when someone comes close, we can also become frightened and want them to go away.

And then I shared that I also fear being on my own and living alone sometimes. I would really like to live in a home where we can live together as a community. I imagine a small apartment or housing community with perhaps five to ten homes, where each person has their own house and private space, but there is also a community hall where we can meet and share with each other. We could have peer support groups, a garden and green space where we can relax and simply be leisurely. There could be a dining hall and kitchen where we can come together and eat, or we could also have our own kitchens and eat in our own homes. We can be a community and live together peacefully. It could be really beautiful. At the very least, we could live with dignity—with freedom, choice and autonomy. We could have daily in-person peer support, and people could go to therapy or meet a prescriber if they wanted to, or explore other forms of health support, including nutritional approaches and other practices. I imagined something like a peer respite centre, a place where people can come and be held by a community without immediately being treated as a problem that needs to be fixed.

And then I remembered John Lennon and wondered: can we imagine? Is it really so difficult to imagine living together? Can we imagine a different way of living? I thought about something like the MAD Camp in Vienna, where people can live together, spend time together, share nutritious food, do workshops and simply be with one another. Another member said that it was easy to imagine, and she felt that during today's meeting she realised that this was not just something that would remain an idea. It could actually become real. Somehow, by imagining it together, the group became more concrete. We started imagining small regional meetings: two members meeting in one city, two people meeting in another, someone travelling once a month and meeting another member nearby. We could have these small meetings and regional communities, and slowly, perhaps, we could meet together as well and build something. We could care for each other. It felt like the imagination itself was beginning to create a possibility. What had started as a conversation about loneliness and fear slowly became a conversation about community.

Another member spoke about how, in some Western countries, people can receive disability certificates and, with them, access jobs, benefits, housing and accommodation. But in India, she felt that there was very little of this support. Another member shared that she has a disability certificate that recognises a percentage of disability, but even obtaining it was not easy. The psychiatrist asked her gruelling questions and questioned her disability, which made her feel ashamed of having schizophrenia. Eventually, she received the certificate, but the percentage was not enough to make her eligible for certain benefits or jobs. And even when jobs are available for people with disabilities, they can sometimes be very menial jobs, the kind of work where there is little pressure but also very little sense of dignity. We thought about the other side of the Western approach too. Even when housing, benefits or financial support are available, people can still be treated badly by institutions and staff. They may still be made to feel that they are useless, a burden or waste, and that society would rather get rid of them. Even when people receive financial support, they can be placed under pressure and treated without dignity, respect or agency. So perhaps the question is not simply whether there is a disability certificate, or whether there are benefits. The deeper question is whether the person is actually able to live with dignity, freedom, respect and choice.

Our mission at Schizophrenia Support Network, and also in these support groups, is to restore dignity to people living with schizophrenia, schizoaffective disorder and related experiences, and to create a space where people can live with authenticity. One participant's words from today's meeting are still echoing in my heart: that in the session she could speak freely as she was, without any masks, as the real person she is—with her sadness, loneliness and fear. She said that she does not show this side to anyone and that nobody knows her like this. She had not been able to be like this for months, and it felt deeply relieving. This is our mission. To live with dignity, authenticity and connection with each other. Another person said that when they are alone and isolated, their illness becomes too much and it becomes impossible to handle. So perhaps we also need to make isolation itself something that we work against. We need spaces where people can come together before they reach the point of complete collapse, and where they can simply belong.

We also spoke about how people with disabilities are often not sufficiently considered in policy. There are very few policies that actually restore dignity to people living with schizophrenia, where their limitations are understood and they are provided with freedom and support rather than simply being expected to adjust themselves to the world. People should have the freedom to work or not work, to study or not study, to receive affordable therapy and mental health care, and to access peer support groups and communities. So perhaps this could become another direction for us to work towards: mental health policy-making in India for people living with disabilities such as schizophrenia. Can we imagine financial freedom that allows people to live with dignity? Can people have enough support that they are not completely dependent on their families in order to live a life of their own choice?

Can the government, policymakers and all of us as members of society become more thoughtful and open towards people living with schizophrenia and other forms of disability? Can we contribute towards creating systems where people receive not only financial support, but emotional support, housing, community, connection and the freedom to live a good quality of life? And perhaps, before all of this becomes policy, we can begin by imagining it together. Perhaps a community can begin with five people sitting in a support group, talking about loneliness, fear and the desire to belong, and asking a simple question: **Can we imagine living together?**

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