Inevitably an advocate?

Was it inevitable I’d get involved in advocacy? Perhaps.

My family experience helped me understand how hard it is for so many people to be heard, and how much difference it makes when they are. I believed advocacy could help achieve this.

I’d also spent years with people with learning disabilities in awful long-stay hospitals. There I tried to make sure people gained real control over their lives, and didn’t merely trade a large institution for a smaller one when they moved out. ?Advocacy was developed largely in response to the plight of people in the same situation as this. Surely, I thought, advocacy must be capable of achieving more in this area and elsewhere.

I’ve learnt from life and academia that discrimination is embedded in social structures that define who’s valued and who’s not. I was inspired by the idea that advocacy could act as bulwark against inequality by challenging injustice, promoting equity and supporting the voices of individuals and communities.

I started in advocacy because I wanted people to have stronger voices and rights and to experience a better life with greater control. That has remained my goal for the last 25 years.

We've come a long way

The right to advocacy developed from being purely theoretical to being established in law. Because of this, the number of people benefitting from advocacy has hugely increased.

The quality of advocacy was once almost entirely determined by the whim and ability of the individual advocate. Now there’s a better understanding about what good looks like, and about the importance of judging the real outcome and impact of advocacy on people's lives.

Advocacy plays a critical role in addressing inequality, challenging unfair decisions, and enabling people to live how they want to. Thankfully, it’s no longer acceptable policy for people to be denied involvement in decisions about their lives.

But!

There’s are buts. Several big ones.

First, whilst policy has changed, this change is not always reflected in people’s lives. I still meet far too many people who feel they lack control, or even involvement in decisions about their own lives. There are still thousands, if not millions of people in the UK who don’t have a voice even when it matters most.

And, whatever its potential, advocacy is still poorly known among the public and among some professionals too. This makes it inaccessible to many people who need it.

The quality of advocacy is still too variable, and it’s been found that at times when it’s most needed its promise of rights and voice has proven illusory. ?

Social care and long-term health services can be brilliant, but are often extremely poor, and getting worse in many areas with stark inequalities to the detriment of people already most at risk. This is a challenge which demands action from politicians, leaders in health and social care, and indeed advocates. For example, there are More than 2,000 people with a learning disability or autism living in mental health hospitals in England alone [link], probably many more, and within this population over 100 people in solitary confinement.

Minoritised people and communities still receive poorer services, not just from mainstream provision, but likely from advocacy services too.

Getting personal

I have personal experience of the same issues in my life.

Last year, a close relative experienced what would have been a disastrous and totally unnecessary admission to a mental health hospital. Especially as we know how awful these environments can be for people, who, like her, are autistic and have learning disabilities. This situation was closely linked to dramatic under-staffing of her service, leaving her needs unmet.

Fortunately, over the years I’ve been able to develop an understanding of, and great connections, to address just this type of situation. Because of a fabulous response by the people and organisations I called on for help, I was able to stop my relative being detained.

Just. By the skin of our teeth.

This reaffirmed for me that having someone on your side is essential. But it’s not enough.

That person needs to not just want to help, but also have the ability to make change happen. Yet so often in life, access to this support depends on who we know, what we know and how much power we have.

Not everyone has family. And not all families can navigate the health and social care system. We know the health and social care system frequently fails to listen to people, their families or to respond well. There are so many well-informed, articulate, disabled people and relatives of disabled people who are side-lined, ignored, and even excluded or prevented from speaking out.

There are plenty of far more able people than me who are not able to stop awful things happening.

The tables are tilted steeply against people and families. We need to change this. We must make sure that people can act with authority whenever possible and do have effective allies. But we must also shift power and make systems work for people.

Importantly, people who are already marginalised are most likely to be left out.

Can advocacy be a bigger part of the solution?

We must do better to ensure everyone can be heard. In my next post, I explore how we can do that, what this means for the future of advocacy, and how we can genuinely move towards everyone having a voice.

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