Radical Kindness: reimagining support

Lots of talk lately has focussed on embedding kindness into public services; that is to say, making systems for accessing benefits or work accessible to people, starting your interaction with people in desperate situations through the way you speak to and interact with them. Kindness can be something as simple as taking the process of applying for benefits from being one of long forms and complicated words to being one of disscussion between someone who needs help, and a specialist able to understand what the needs are of the person in front of them, although I would add that larger change is required, not just individual ‘disruption’.

The systems we set up relating to disability are perhaps a prime example of how we approach kindness. No one goes into public policy with the stated intention of being unkind, but this relates to how we measure achievement and results. There’s the ‘rational’ measurement of public policy – the concept that everything can be reduced to a scientific ‘facts and numbers’ approach, which follows very conventional ways of doing things. Then there’s the ’emotional’ measurement – this talks about individual wellbeing, relationships, trust, hope. I’ve talked a lot about the tyranny of standard practice on this blog – the tendency to pathologize autism and treat it as a curable curse, measured in ‘severity’ by vague ideas of independence. Its empathy and compassion for autists that has started to liberate from the tyranny of ‘normal’. However, the so called common sense approach persists in autism-politics and other areas.

Some Background…

Many people living with disabilities in the UK for example have had to go through the process of applying for PIP – an overhall of the old system in which a medical recognition of your condition or impairment entitled you to certain benefits. When I did my PIP form, I found the questions to be weirdly vague asking about topics such as ‘nervousness’ and ‘feeling uncertain’. Remember, I was obviously trying to apply to receive Personal Independence Payment. This had the effect of making me almost obsessively pour every negative detail on to the form in the hope that something I said met the criteria. The interview stage was more conversational than expected but not in a good way. On the issue of getting to uni, I was presented with a lot of hypothetical questions aimed at testing my independence: “what would you do if you couldn’t get a lift to the train station?”, “what would you do if the train was cancelled?”, “what would you do if you got the wrong train?”. These are all things I have encountered and oddly enough, overcome but this is nonsense questioning – just because someone might find some areas of life easy, doesn’t mean they wont find other areas challenging. Honing in on a set few areas to see if a person is entitled to long term support is the logical equivalent of making a judgment about someone’s math skills based on thier reading and writing.

When talking about a topic like this, politics is almost impossible to ignore. Of the PIP decisions appealed in court, about 70% of such appeals go in favour of the people who bring them. The most recent controversy in a seemingly never ending list, circled around the Department For Work and Pensions phoning people appealing the decision to deny them benefits, and asking them to decide on the spot whether they want to accept a sum of money lower than that which they’re entitled to. Despite the scheme being set up specifically to stop money being spent on false claims, this is clearly very costly. I became engaged in politics around 2010 when the prevailing narrative was one of schemers and scroungers, “when you get home from work and see your neighbor with his curtains closed” narratives, used to justify the austerity politics of the Tory government. This happened against a background of my dad being unable to work, living in an apartment with my younger sisters. Talking with local people over the course of a few years meant I quickly learned about the different barriers; poor mental health provision, lack of access to technology, bereavement, childcare. Given my struggles with social interaction and anxiety it was always very easy to see how I could end up in a similar situation; among those looked down on.

I think kindness can be both a positive and negative way of talking about how to reform this; on the one hand if we are to change the way we interact with and talk about people we need inherently kinder systems in place. On the other, we need to go beyond kindness and empower people to shape thier work and personal lives in ways that are in defiance – or, to be technical – unkind to those who are not kind to them. Let’s continue to look at this through the lens of autism and disability.

The Problem of Unkindness….

The reason I started this blog by remarking on my experience with the benefit system and being around people in desperate situations is because I think its a perfect example of how the ‘unkind’, target led, punitive approach to public services has failed. The response to Coronavirus has demonstrated the ability to act differently. In the early days of the pandemic there were efforts to make hotel spaces and bedsits available to get homeless people off the streets, and mutual aid groups sprung up around the country giving people supplies and personal support – unfortunately, these have only really been understood up to this point as short term responses to the crisis. Streets are again filling up with homeless people and mutual aid groups have suffered from lost momentum and lack of long term funding. Rather than simply asking people to be kind, radical kindness demands that we identify specifically what areas of life are unkind; risk of homelessness, benefit systems built on assessments and sanctioning, long waiting list for mental health, and working to reshape our societies and relationships along significantly ‘kinder’ lines.

My needs assessments being unkind does not relate to the attitude of the assessor – for what its worth he was alright – but that it was a tick bock excersise based on a series of indicators aimed at deciding whether I’m ‘autistic enough’ and used to determine how much support I could receive. That, alongside the insidious factor that the system is designed to be punitive. As Charlotte Waite from mental health and social change charity platfform states:

“We have a landscape of services where accountability is prioritized over learning in measuring outcomes. The current system offers an overly simplistic way of assessing the work of people who implement public policy by performance-measuring them against quantitative targets. Naturally, wanting to do well, people are driven to hit their targets. And so begins a dance between service and commissioner, where each knows the data is painting a picture more about justifying the existence of the service than making the difference it was intended to make when it was designed”

Charlotte Waite, Kindness in Public Services

At this point people will likely point to the problem of resources, and how we allocate them, and I won’t attempt to answer those questions here except to say that a ‘kinder’ approach to politics, to services, to public life of course involves assessing things on that massive level of how we allocate resources as a means to make our support systems more tailored and able to meet peoples need. However, I often find the way we talk about resources creates an us and them mentality between the people who ‘have’ the resources and service users, who need to live up to the measurements we set to receive support. My argument is that human relationships and the way we think about the ‘helper/helped’ relationship plays an important role in creating kinder systems of support.

A practical alternative?…

I realise an idea as sentimental as ‘kindness’ might be a tough sell for some people, so lets talk a little about the practicalities of the idea. One of the main arguments for the ‘rational’, numbers based approach to doling out support is that it – in principle – ensures fairness, by making sure everyone is assessed equally and subject to the same criteria. It can be verified and provides for fact checking. On that, one of the criticisms of the emotional metric is that its quite sentimental, populist and can’t be measured. Paul Bloom in the affectionately titled Against Empathy argues that it is precisely the role of the state to rise above the challenges and complexity of individual emotion and to instead be structured through a clear framework of rights and responsibilities.

However, this argument doesn’t work when you consider that not everyone has exactly the same needs. Don’t get me wrong everyone deserves to be afforded equal levels of dignity and respect, and with a financial benefit like PIP theres only so much flexibility you can have. However, wider needs assessments relating to precisely what support people receive demands that individual needs are understood and accounted for. Proper autism support does not come from treating every autistic person as if they are the same – some autistic people suffer with chronic mental health problems, some are born into poorer families than others, some are diagnosed and end up receiving thier assessment earlier or later in life than others. How on earth can you treat all these different situations as requiring the same response or the same type of support? This is precisely the opposite of Bloom’s argument – having a system of inflexible rules and ‘standard practice’ dosen’t make sure things are fair but perpetuates the inequalities that already exist.

Whatsmore, to imply that you’ve got the messiness of emotions as one factor and then the sensible level-headed nature of public policy as another is deeply flawed. So much of our public policy and discourse is based on emotion and ideology. Like I said, the discourse surrounding the reason for introducing systems like PIP was that we as a country were too charitable, and that we needed to punish the undeserving. Many autisitc people live in community housing with a few carers and perhaps five or six other autistic people. This is despite the fact that, for many, moving into a care home is recognized as a distressing transition. It comes about because of the recognition of vulnerability, frequently coincides with the death of a parent, often involves moving from the family home at the same time as becoming
used to loss of other sorts – of capability and capacity, of freedom, and of individual autonomy. These examples show how separating emotion and public policy is difficult if not impossible. Rather than trying to sperate them, I argue that we should be trying to understand precisely what emotions motivate our policy decisions and what our decisions do to people on the inside. Not only will that help motivate us to kindness, but will be a kind act in itself.

How precisely do we do that though? You can’t exactly measure kindness, right? Well, this narrative too is quite over simplistic. The argument feels
logical – the rational world of measurement cannot fully meet the emotional world of subjective experience, and no one has yet come up with a way of quantifying emotion down to a specific enough level. However, we measure emotion all the time. Social media has practically built an entire industry off understanding and manipulating how people feel.

“Official statistics measure not just the reported crime rate but also the perception of crime in a neighbourhood, the latter having a
stronger correlation with individual wellbeing. We measure life satisfaction and put great weight on programmes that have proven impact on participants’ satisfaction with their own lives, despite
the fact that objectively we value different things. We measure subjective views on the quality of work, of neighborhoods, of public services, as well as the objective ‘truth’ about these aspects of our lives. So it is not that we cannot measure kindness. It is that we choose not to measure kindness as an official measure of how we are doing as a society”

Kindness, emotions and relationships: The blind spot in public policy

Read the last two sentences again. “It is not that we cannot measure kindness, it is that we choose not to measure kindness as an official measure of how we are doing as a society”. What if we did? If we measured how people feel about thier housing, about thier disability benefit, about thier mental health, what conclusions could we reach? Following that, how would we use that info to enact policy decisions that improve peoples wellbeing and psychological safety? No one is suggesting we abandon statistics and numbers as a useful way of holding the powerful to account, or gauging how society is functioning, or that we allow our emotions to take hold of us and guide our every decision, simply that we stop looking at the two as entirely separate.

An Atypical Perspective

After a year of lockdowns, there is widespread recognition that society needs to change. Ideas like remote working, mutual aid and the protection of vulnerable groups present great opportunities. We also know that huge sections of society feel disenfranchised after losing thier livelihoods, feeling isolated and cut off from society, and not receiving the support they need to get through this crisis in a healthy way. We are tired, we are missing our friends, and we have a hope that we’ll do better in our personal commitments when lockdown ends. Our beliefs and actions are shaped by our emotions – our history, our expectations, our sense of agency – perhaps more than they are by logic and reason. And at times of crisis, our need for a kind response from our politicians and institutions is powerful.

The response needs to be substantial and real. We can’t just rely on individual acts of charity to ensure the wellbeing of our society. Kindness is radical. At its best it demands a change in the relationships between people and those in authority. If those most affected by Covid are not involved in how decisions are made moving forward, yet more trust in the systems we rely on will be lost. We need a new social settlement that realises the importance of emotion and makes sure that decisions, and leadership are rooted in an understanding of how people feel. Only through this, can we inspire people to be better after the pandemic, and achieve lasting change in our communities.

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