The Message is not Mixed: How Covid Communications have Clarified Society’s Erasure of its Mentally Ill and Neurodivergent Citizens

Delivered as a talk on may 14 2020 at “Disability in the Context of Coronavirus” hosted by the Bonavero Institute for Human Rights

There are few better indicators that an individual or an institution does not understand the uneven distribution of the effects of Covid19 than statements welcoming a newfound sense of community or questions looking eagerly to the future asking how we might carry forward the positives that have come out of this crisis.

And there is nothing so telling about an institution’s attitude to its most vulnerable members as the responses given when those communications are questioned.

It is very easy, and seems eminently reasonable, to argue that exceptional times require emergency measures; that in moments of crisis we must simplify our strategy and focus only on the urgent – and in a way I agree. I just don’t agree with many about what it is that is urgent.

I would argue that it is especially at times of crisis that we need to prioritise the most vulnerable. And that is because of the role narrative plays in fashioning society. In particular the foundation myth. In times of crisis, how we survived matters – that is what becomes the foundation myth for the society we rebuild. And if we survive by considering our most vulnerable expendable then what comes next will become a dystopia that is all too easy for many of us – and I want to talk here particularly about those of us who are mentally ill and neurodivergent but it applies to many more – to imagine.

I am aware I have very little time – and that, the importance of the narratives we choose to frame our societies – is the main point I want to make. I will use the remaining time to outline very briefly some examples of the ways in which Covid19 messaging has excluded or directly harmed mentally ill and neurodivergent people, and then I want to offer a series of questions, which I have developed as a field kit for communications officers – questions which it is important to ask before sending any message.

If I have one further point I would want everyone to take away it is that when an institution communicates it makes a choice whether or not to exclude us. The erasures, the harms, may not be conscious – but the failure to ask the questions that would bring them to light are deliberate; the failure to place the vulnerable at the heart of your crisis comms is deliberate; the fact that you do not understand how we are erased comes from a deliberate decision not to address your privilege. What I ask is that institutions own those decisions. That we stop hearing “we didn’t mean” or “we didn’t realise” and start to hear “we chose to ignore”

So, a few of the areas in which we have been affected – and I would also recommend  the MMHPI’s new guide to customer service minimum standards for the finance sector which has a fantastic list of ways to avoid many of these.

  • The gap between policy and guidance. From the moment the Coronavirus Act was passed, there was a messaging gap between law and guidance, in particular there was oversimplistic Messaging around exercise and leaving the home, and even when the written guidance had to be clarified to reflect the needs of autistic people under the Equality Act the messaging remained at odds with it  as a result in real life and across social media autistic people were shamed, and fear of shame led many not to go out at all. What is amazing is that this is surprising. We know that half of people in the UK would challenge someone they didn’t think looked disabled accessing the things they need – in the light of this, deliberate or not, failure to account for this empathy gap in messaging can only be seen as culpable endangerment. And we are about to see it again in respect of face masks.
  • Most damaging to trust between disabled people and institutions has been the speed with which adjustments have been enacted for everyone that we spent decades being told were not possible. What conclusion are we to reach other than we were never valued and what was denied us was a lack of choice. I have yet to see a single communication around “new working practices” which recognises the hurt this has caused – and now they’re made available our new needs are ignored – around online interviews and meetings for example
  • Finally there is furlough and the unequal opportunities for those not furloughed –messaging has gone out, certainly in Oxford, that no one will be adversely affected yet it is clear that those who are unable to “improve themselves” while on furlough *will* be adversely affected in terms of future opportunity for reward and promotion. Even the messaging that congratulates those who “carry on working through” ignores – at best –  those who are unable to

So let me finish with 7 simple questions every communications officer should ask before putting out a message. Questions which would have avoided – or led to owning – these harmful outcomes.

Look using the questions developed as part of a comms field kit designed to make policy, and the communication of policy, less exclusionary of mentally ill and neurodivergent people

  • If I am asking people to do something, does it seem easy? If it does, that may be a sign that I have failed to consider things that make it difficult for some people. For example if you say “wear a face mask” you might be missing the fact that for autistic people, for example, cannot do so without sensory overload, and many deaf people rely on lip reading.
  • Does it seem simple? As above. For example “telephone your manager” ignores the fact that for many people telephones are an inaccessible means of communication.
  • Am I making assumptions of privilege that could alienate some people I am addressing? For example, talk about exercising at home or doing things in the garden, or even working on a table all assume that these things are available to people. For many of the most vulnerable, they may not be.
  • Am I confusing wellness with illness? It is important to consider everyone’s health. But people who are ill often have specific needs that are different.
  • Is there a danger what I say now conflicts with what I have said in the past in a way that singles out disabled people? For example, if you are now proposing remote working, is this something you have previously denied to disabled people who have asked for it? If so, before you communicate, think how upset they might be and address that.
  • Am I ignoring people’s hardship? We often want to be positive and keep people’s spirits up, but for some people life will be incredibly hard. Disabled people maybe finding it impossible to focus on anything except staying alive. It is vital that they realise you understand this.
  • Am I falsely equating people’s situations? We often want to show solidarity and we say things like “we all…” or we equate our experience with that of disabled people, but this can be both patronising and simply untrue. We know that being sad is not the same as depression. Likewise finding Zoom tiring isn’t the same as finding video communications inaccessible, and being frustrated by lockdown isn’t the same as being housebound for years.

 

Of course, it is hard for people to stop and ask questions they don’t fully understand and draw from them answers to which they don’t fully relate – even if they have the deepest desire to do so. And that is why the most important thing any institution can do is to ask these questions to us as a community, and ideally to do that as a matter of course because we are systematically embedded in the teams that make policy and communicate it. This always matters. It matters doubly so in times of crisis

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