We take as granted ideas of independence, autonomy, control, agency, and choice. Our mental health legislation is, in many ways, based on these ideas of us as individuals, as the ideal we aim for when looking at people with experience of mental-ill health. But we might do better to look at connection, belonging, and community and recognise that the choices we make are often as much the choices of those we know as our own.

Some of us make choices others feel unwise or alien and rather than having our autonomy stripped from us, find that the community around us excludes and avoids us. Many of us find new accepting and inclusive communities in the world of mental illness, although what should happen when our own condition causes us to be excluded by even these safe places?

"If I dress a certain way, I will be seen a certain way and treated a certain way; if I laugh at the wrong moments, or cry in the wrong way, make the wrong sort of jokes, dislike the wrong groups of people. If I argue too much, love too much, talk to children who are not related to me, lie down on a bench or on the pavement, read a book at a party; if I make faces, wash too infrequently; if I talk too much or say exactly what I think…… If I do these things or myriad, myriad other things, I will find my neighbours ignore me, my friends try to change me, my acquaintances avoid me, my family discuss me, my employers monitor me, the community make up a nickname for me. I will find myself slowly discarded, slowly let go. I will gently find myself alone, people will avert their eyes, they will stop being honest with me. People will tell other people to avoid me and slowly the telly will replace people for conversation, and all those webs that bind us together will be snipped through, one by one, and I will be alone. If I am lucky, professionals will step in to provide companionship, but they will write up notes of each encounter and each sentence will highlight my inadequacy. Christmases will come and go, and I will see no one, and I think to myself, ‘What do we mean by freedom?’"

This is an extract from my memoir: START and is one of the key reasons why I get confused that we can get so caught on compulsory treatment as the be all and end all of legislation. I need to explain; I am neither a professional nor an academic so what I say may seem very basic. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is very firm, both as a convention and as a committee, that discrimination on the basis of disability is wrong and should not happen.

As far as I can see, this is because they have adopted the Social Model of Disability and now a Human Rights Model that more or less argues that it is not our impairment that is the problem but how society reacts to that impairment. This has led to many people saying that compulsory treatment, if it is on the basis of a mental impairment is wrong. There are many interpretations as to what that actually means but underlying this is a raft of assumptions about choice and autonomy and agency. Just as with any other member of society we should be able to make the decisions we want and act in the ways we wish without sanction.

That is ok as far as it goes but it is centred on us as individuals and forgets that we are a part of communities; that belonging, and connection are central to nearly everyone’s existence; that all our actions are influenced and determined by each other. In some ways autonomy is a strange idea when I think how almost every decision, I make is influenced and sometimes determined by those I love and live amongst and so they should be! It irritates me! The constant need to provide us with independence and autonomy when in my ideal world I am part of an interrelated network of people and communities who all influence each other profoundly.

What should happen when our own condition causes us to be excluded by even safe places?

With mental illness and other conditions, it can be hard to separate out just what is illness and what is just a part of who we are. The way I act and communicate is intricately bound up with the schizophrenia that I struggle to believe I have and that profoundly affects how other people react to me and how I react to them.

Let me explain; I am articulate and in the right circumstances can be funny and charming and engaging but that is not my norm: I get it wrong all the time. When I am not working and performing, I am close to mute, spontaneity and creativity is distant and when I am in company, I grin, nod my head frantically, laugh, mainly in the right places, but do not speak, do not participate, miss the standards of conduct we expect.

In contrast I now sometimes go to a resource centre. It is near where I get my injection. Some years ago, it was suggested I went there. I would walk into the kitchen, stand uncomfortably, or take a chair and take my leave as soon as I possibly could. Then maybe a year ago something changed, and everything clicked. I now go to pick up food, do the photography, the creative writing; that sort of thing. It is a place where I feel included and accepted and can drop my mask; drop it so much that I am able to be almost normal: to joke and laugh and witter; something I had almost forgotten I could do.

It is a place where we are accepted; where we can be too loud and interrupt, where we can sit silently and say nothing; where we can just Be. And I love it, I feel safe and accepted there and would hate it if someone came along who destroyed that safe special space. But in common with other places that I have been to and sometimes worked at; there are always ground rules.

They are there for a very good reason; if you are a young woman recovering from the abuse of men, you need to be safe from predatory people, who may be exemplified in sexually disinhibited men who have gone high. If you seek sanctuary and peace, you need to be safe from disruption and anger and fear; all these things. The ground rules exist to help us know what is expected of us and to help us with our own behaviour, but they are also ultimately there to be enforced. We know that although the places we go to will bend over backwards to accommodate us, there are points at which we can end up excluded.

I have seen this when members of a group told one member not to come back because he kept on displaying disturbing behaviour he walked round and round the room while people were trying to speak; it reduced many of the more vulnerable members to tears, with one hiding under the chairs in the room. Or another where the arguments, emotion, and interruptions of one member, whose own life was terribly damaged, meant that what was a thriving group became a silent one, which had lost most of its members. She was finally asked to leave when she became violent when her distress at being, as she felt it, ignored at an event was too much to bear. Or lastly in my case, when a man who was seeking my help, became paranoid about me and told some workers that he knew my address and would harm my family because I was out to damage him.

Some of that behaviour is maybe just unacceptable behaviour but often it is so coloured by our illness that we know our behaviour is part of, just as my passage from START says at the beginning. Sometimes I think it is the small but just detectable differences some of us have that mark us out for exclusion.

The point is that at some point, even communities that try to be inclusive and accepting can reject and exclude in an effort to protect and nurture the rest of their community. Under compulsory treatment there is always the belief that intervention will be of benefit. Our debate under compulsory measures is now around our will and preference and how we can be supported, even when we have severely impaired decision making ability, to reach our aims. The reality for many of us in the community and in our daily lives is what I said at the beginning of this article: Exclusion and the loss of support and connection. Not to benefit us or act in our best interest but to protect or shield others from us; from the effects our disability and its effect on our communication and behaviour.

Is isolation and alienation an even bigger issue than our compulsory treatment where at least the aim of it is meant to be to help and benefit us?

In some ways we could return to the UNCRPD and say this is discrimination on the grounds of disability and should not ever be permitted. I have seen action on this in school where a family member, often excluded due to their behaviour, was suddenly seen to have a disability. The whole school training that resulted meant that he flourished and thrived. However, I have also seen the behaviour of some people, due to their mental illness, cause incredible and lasting damage to others.

Most often when we are relapsing, if that is what we want to call it, many of us exclude ourselves. We know we cannot manage any more socially and know people cannot cope with us at such times, so we retreat and isolate ourselves and practice our own self exclusion maybe at just the time we need that company.

I finish feeling very torn, I know the viability of many communities I belong to depend on their own self-policing and that without it connection, belonging and joy would not exist; the community would implode and tear itself to pieces. At the same time, I think about the people who are excluded from services and communities, who gain nothing but sorrow from that exclusion, maybe suffer far more than those people who receive the compulsory treatment that is at least currently aimed at benefit.

Somehow, we need, if looking at ideas of freedom and autonomy, to include the values and needs and aspirations we all have as members of diverse communities and work out if ever we can have communities which everyone feels they belong and have connection to.