Why our Human Rights Act Matters...to everyone

I came up with a cheesy slogan: every mind, every body, every nation. By every body, I mean whether or not you've got any sort of physical disability, no matter your gender, your sex, whether you've got a chronic illness or not, whether you've got any sort of health problem. Every mind means whether you're neurotypical or neurodivergent, whether you've got a mental illness or learning disability. And every nation means no matter your religious background, where you grew up, what language you speak.

We talked in our campaigns group with our members about human rights being for everybody, it’s about every part of our lives. That’s what it’s meant for some of our members: it’s not something that’s separate from them, this is something that’s key and integral to every part of their lives and the situations that they live in.

Universality in its truest form I feel means “equal” – treating everyone equally with equal respect, equal rights, equal dignity, equal opportunity. And I feel there’s this concept of equity that exists within universality itself. Universality basically for me means giving everyone the same opportunities and the same respect and understanding. Sometimes there are situations where there’s a little bit of judgment or a little bit of bias or unconscious bias but I think that universality is above everything. Everyone should have access to human rights in the same way despite their gender, despite their beliefs, despite the social, economic status that they’re in, despite their education. They should have the same opportunities to access the Human Rights Act and to use it because from my experience, when we use human rights in the women’s sector, a lot of professionals are taken aback – they say “what does human rights have to do with this? This is not a human rights issue.” It is an issue for everyone, it should be made available to everyone in the same way despite where they’re coming from and what they’re doing. Obviously, human rights apply to different people in different ways and there’s also, I think, an inherent concept of equity to make sure everyone can access the Human Rights Act even if they have a barrier.

For me, it’s one of the biggest strengths of the Human Rights Act because we don’t see that same universality in so much legislation. So much legislation is built on power structures and exceptions and not allowing it to be for everyone in that same way and I think that’s a really important part of the Human Rights Act in that it is for everyone. I think the importance of Article 14 [the right to be free from discrimination] in making it equitable is even more key to that.

it’s not something that’s separate from them, this is something that’s key and integral to every part of their lives and the situations that they live in.

And the fact that this law is for everyone, why is that so important? Why does it matter that human rights are for everyone?

I think human rights are important to everyone because everybody should have the right to be heard and have a voice and we’re all equal, whether you have a disability or not or if you’re transgender, lesbian, anything.

I guess because if the Human Rights Act was to discriminate, that would send the message out into the world that it’s fine to discriminate against certain individuals and certain groups. People come from different financial backgrounds and have had different pasts. Not everyone has the same life opportunities, that’s a fact, but they have equal human rights.

You never know what you’re going to end up coming up against. Before I ended up in a psychiatric unit, I never thought that was going to happen to me. There are so many situations you can come up against – people can become disabled at any point in life and most people will at some point – and having that protection across your whole life in all of your experiences is so important. We live amongst so many structures that are so problematic at a fundamental level but what we can do is make sure people still have access to this structure that means they can challenge their rights being taken. Without universality, you wouldn’t have that aspect of things.

The essence of human rights, when it first became law, was that it is for everyone – without any discrimination. Unfortunately, I don’t think we have always seen it being used by everyone and for everyone and sometimes, when people hear human rights, there’s almost a negative connotation with it – as much as we would like to say there isn’t. That’s what I came across when I tried to introduce human rights in Hopscotch and the women’s sector and there’s still a little bit of reluctance, a little bit of fear and asking, “why are you attaching human rights?” It’s still a little bit political. I was quite shocked and disappointed because I never thought of it like that but there are people who think of human rights in a different way. I think that’s really, really sad and disappointing but unfortunately that’s the reality. I think where universality comes in is that we have to reestablish the fact that the whole Human Rights Act, all of the Articles, actually have something positive to give to everyone and I think that that’s what we need to show.

I think human rights are important to everyone because everybody should have the right to be heard and have a voice and we’re all equal

Do you think there’s often common misconceptions about that universality element of human rights? Or common reactions that don’t really reflect what it’s about?

I do think there are a lot of misconceptions around human rights. There’s some level of fear and apprehension; some services don’t want to use the words “human rights”. They don’t want to associate themselves with it because they think it’s very different to what they’re doing. They think it’s really specialised, it’s a completely different sector and they just don’t want to blur everything. That’s some of the reactions that I got and that’s when you have to get in and explain to them what the Human Rights Act is about and you have to go through the Articles, break it down and explain how it’s really useful for our service-users. I think there’s a lot of doubt that the Human Rights Act is actually for everyone. Most of the time when we hear the words “human rights” people think about immigration or war crime, which is important, but a lot of the professionals in the women’s sector are not clear how the Human Rights Act is and could be applicable to women and girls. So, there’s a lot of work to be done – at least I can say in this sector.

When most people think about human rights you think about the extreme cases and the big decisions. When we started the NHSE programme [of human rights workshops for staff, advocates and people accessing services] and somebody talked about blanket bans and banning people’s phones, I realised I hadn’t really thought about that. Because you think about when things have gone wrong and there’s been a massive incident or somebody has died; you don’t think about day-to-day things. As well as that, it might be perceived that people in prison or who have been in prison do not have access to the same human rights. Things are restricted, but you’ve still got access to human rights. Similarly, people who are deemed to lack capacity and their right to autonomy – yes, being deemed to lack capacity means there may be decisions that have to be made for you, but it doesn’t mean your opinion means nothing and it doesn’t mean you have less access to any of your rights.

That was our experience with not just our members but also the support staff and professionals supporting people with learning disabilities. As a campaigns group, we went a few times to our bigger groups and tried to engage people’s interests at the start of last year and we found people to be quite disinterested initially – and that included, very disappointingly, a lot of support staff and professionals there. But as we started to use BIHR’s tools and take those along and say, “this is about your life, this is about the life of people you’re supporting and how you’re supporting them”, people started to engage more fully. There are definitely areas where some provision is so poor that that’s considered a “cherry on top” rather than a right people have. I think it’s a huge issue in the care and support sector and health as well – certainly in west Wales and I suspect elsewhere.

Yeah, I think there’s definitely a misconception around people who are living in residential care when they could have the support to live independently – especially during the pandemic. One of our members lives in residential care and the rules and regulations that were happening in his home took away the rights of people with disabilities. He couldn’t even walk around his local community by himself. He was just basically locked up like a prisoner; he was unable to do the things that he wanted to do.

Before I started working with the team, I had no idea about Article 8 [the right to private and family life]. You kind of know education is a right, you kind of know life and liberty are rights – you might not know the detail, but you know it’s there. But with Article 8 (and probably possessions as well) you don’t know it’s a thing. Beforehand, I wouldn’t have thought about wellbeing and autonomy and known I have a right to that – I just thought it was a nice part of living. I don’t think it’s something people understand and when they do hear it, they don’t often know how to apply it in context.

you think about when things have gone wrong and there’s been a massive incident or somebody has died; you don’t think about day-to-day things

Has being involved in the Committee made you think about human rights in a different way?

We were part of making the Easy Read postcards with Warrington Speak Up and I think when we get involved in that it changed our perception. We took them to Stay Social, a group we go to on a Thursday, and that actually opened up people’s thoughts around human rights.

I think the postcards were such fantastic tools and we were able to take them to all of our membership. We’ve had discussions before, but the postcards were the things that captured people’s imaginations and gave them the sense that they could take these elsewhere and start opening up those conversations around human rights.

For me, because I come from the background of being in a psychiatric ward, I didn’t really think beforehand about what it would be like to fight from an advocacy point of view or a parent’s point of view so hearing from those perspectives kind of opened my eyes into like the challenges and how to go from that angle because it's not something I've had to do or had to think about that much.

It’s interesting because I work across so many different places, like other charities and the NHS, and I'm always finding new places to apply human rights knowledge. It's something that comes up elsewhere now in a way that I wouldn't have been able to use before and I think the Committee is always going to be a part of that because, ultimately, I'm still only one human with one set of experiences and I think it's very easy to only think about the people that surround you and your experience rather than going wider than that so I think the opportunity to do more and see more and hear more is always really useful.

Have you come across human rights being used in a way that surprised you or in a way that you've not thought about before?

It surprised me when I heard about blanket bans and phone restrictions – that’s really important, but people don't think about it. Similarly, with the right to education and thinking about access arrangements and people who shouldn't or can't be in a mainstream school and how they also need an education and the importance of that.

I think I said this at the House of Lords event [celebrating one year of the RITES Committee] but when I was growing up I always thought “everything is politics” and it's not just that everything is politics, everything is human rights – in a way that I don't think most people ever quite understand because they're not given that opportunity to do so. I think pretty much any situation will have a human rights angle, it's just whether or not that is actually brought to the table and understood. It might be things like autonomy or communication or that are less obvious or it could be what should be more obvious but often isn't seen – like the use of the Mental Health Act. Some people still don't believe that people who are detained should have the same right to liberty. Human rights are a part of so many of these situations but it's just not bought to the forefront.

I’m not necessarily surprised but I’ve found everyone's experience and expertise in this committee very enriching. I was pleased to see the Human Rights Act being used in so many different ways – like in the mental health sector, to educate professionals and challenge decisions around learning disabilities, and around the cost-of-living crisis. We anticipate that the cost-of-living crisis is going to get worse and obviously it’s always been a human rights issue but it’s almost like it’s been accepted by a lot of people as just a part of society rather than a social justice problem.

everything is human rights – in a way that I don't think most people ever quite understand because they're not given that opportunity to do so

What would you think is the most important message for people and for politicians about human rights in the UK?

That you can't take a one policy or one rule fits all approach – it has to be proportionate.

I think for me it would be that everyone needs to know more about Human Rights Act. They need to educate themselves and the next generation around the Human Rights Act and its importance because if we don't educate ourselves and everyone around us then they won't understand the value of this act. And the second thing is that everyone has the same right to use and utilise the Human Rights Act. It is there for everyone to be used as and when they need it to protect their fundamental rights – it’s for women, it's for men, it’s for the LGBTQ community, it's for people with disabilities, it's for people with diagnosed and undiagnosed and underlying mental health conditions…it's for everyone. I think that would be my message to politicians: it's not just for them to use it for their agenda.

It’s hard to package it down because it’s so big but the fact that it does affect your daily life; it doesn't just impact you if you are dealing with something like migration or prison or psychiatric care. I think people should put time into understanding this because it's a part of protecting yourself to learn what your rights are and how you would be able to challenge them if something did happen. I think for politicians, understand the point of the Human Rights Act is universality and you can’t use other legislation to make human rights go away.

I think my message would be to break down the barriers for people with learning disabilities or any disabilities because we can achieve our goals like everybody else. Last year, we did a project where we documented the lives of people with learning disabilities and we had an exhibition at the Welsh Assembly and politicians really appreciated it so I hope we can use that project and take it across Wales because I believe people can achieve great things and we need understanding and education.

everyone has the same right to use and utilise the Human Rights Act. It is there for everyone to be used as and when they need it to protect their fundamental rights

You’ve said how important it is for people to know their rights before they actually need them: how do we do that? How do we get people to see the relevance of the Human Rights Act?

I don't think there's one answer, but I think it should be part of curriculum. I think some schools do the United Nations Convention on the Rights of the Child but you don’t later get any particular education on your human rights as an adult or as a citizen. I think the history is really important but it should also be in a PHSE context, understanding how you are protected as a person.

I love the ideas about education. There’s been some talk in our local school that they would like us to come in and talk about human rights so we are hoping to go and take the human rights postcards along. It's a nice place to start – getting across that information and education early.

For those who work with public bodies, do you come across misunderstandings about universality and how human rights apply to children and young people?

I think so, there's a big gap there because of the ideas of parental responsibility and Gillick competence. They don’t really think about the human rights side and when told, they say, “I thought you had to be an adult for that to come in to play”. I think we often as a society don’t see children as having autonomy of their own so when you put them in a human rights scenario, there’s plenty fo staff and even parents who wouldn’t recognise it.

There’s such a stark difference; I turned 18 in hospital and was transferred to an adult ward and suddenly there’s no routine whereas in the children’s ward they felt they could tell you what you ought to be doing even if it was nothing to do with risk or safety.

Finally, do you have any views on why the idea of universality can sometimes feel so challenging for people and for politicians? And how do we explain why universality is so important?

I think it comes in combination with issues like ableism and different phobias. Especially when you talk about disability, so many people believe that we inherently don’t have any capacity or ability and so we can’t have the same rights because we’re different. I think it’s very tied up in the society we live in and power structures and the difficulty with seeing everyone on a level playing field.