It’s a funny old time in academia at the mo. COVID-related research funding chucked around at times like sweets at a panto. The typically onerous processes of lengthy, lengthy form filling stripped back to enable speedy knowledge generation and transfer in real time. Action, immediacy, finger clicking are features of a different health and social care research landscape.
In May, the DHSC commissioned Public Health England (PHE) to conduct a review into the deaths of learning disabled people from COVID-19 after concerns were raised about this group. When you die on average 20-30 years before your peers [howl], a focus on how you fare during a pandemic with things like dodgy resuscitation notices, PPE equipment shortages and confusing information, is kind of crucial.
‘No shit Sherlock’
When I’ve more time and I can bear to, I’ll search this blog to see how many times the word ‘Sherlock’ features. A fair few I suspect. I doubt if anyone with (genuine) engagement and involvement in learning disability related stuff could possibly have been surprised by the review findings. Existing evidence, including numerous reviews, which underpins the path to premature death and impoverished lives along the way is now dense.
Less haste and more speed
Unlike the COVID research funding streams, there was no urgency in publishing this review, or even sharing early findings to start the whiff of essential life saving action. As Prof Hatton asks:
Instead a delay of months. I don’t know. Across decades of learning disability related scandals, horror, tears, rage, campaigning, fighting, the preventable death of our beautiful, funny, son and so many other people, this particular delay – during a global pandemic – cuts deep. There was no urgency. No urgency at all.
Senior and other bods in the Department of (Almost always) Health and (Sometimes) Social Care must have known the review findings back in July/August and ignored them. No one cared enough to say ‘Crumbs, we must act now’.
According to the BBC, Social Care Minister Helen Whately ‘has announced a review of the findings’. A review of the review. Pushing action further out of sight.
Scratching below the surface
The outrage the review generated was (for me) unexpected. There’s no guarantee of interest in the findings of any of these reviews. You only have to do a quick google of Winterbourne View and then Whorlton Hall to see the precariousness involved in trying to generate engagement with documented and even visual accounts of torture, abuse and death making (in a so-called civilised society).
Channel 4 News even led with the review in a substantial piece that included an interview with Ciara Lawrence, a self advocate, giving the story the centrality and authenticity it demands.
Sadly much of the response fell down the rabbit hole effectively created by the presentation of the report content and accompanying DHSC press release. It’s never a good look to be caught out effectively culling sections of the population and the press release in particular worked hard to head this off in the following ways:
- The inclusion of a handy and superficial ‘get out of jail free’ clause – ‘people with learning disabilities are more likely to have other physical health problems such as obesity and diabetes’. An early marker to place the blame firmly with people, ignoring the core issue of the impact of the systemic and longstanding disadvantage people experience.
- Prof John Newton added further fodder to this ‘faulty stock’ narrative with the statement ’It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.’ People are made vulnerable by the actions of others, John. You are in a position of power and influence to do so much more than intermittent and ignorant handwringing about this.
- A sizeable chunk of the 214 word press release included a deficit laden description of what a learning disability is(n’t) and the Woeful Whately referencing the ‘cruel disease’ trope. Cementing the distance between the review findings and government inaction.
I suspect much of the publication delay was due to comms meithering.
When the swears no longer work
So what are we left with? I don’t know really. The swears have finally (hopefully temporarily) run out. Calls to bung everyone with a learning disability into the shielding category misses the point. Learning disability is not a medical condition and the issues that demand immediate action are (again) long term systemic failings in health and social care support.
The circulation of ‘the most vulnerable group in our society’ narrative is damaging and disempowering. The latest scandal risks using the pandemic to drag us even further back further from meaningful change. The government are complicit in this with the careful othering woven through their press release. For now I’m left with ‘Don’t make me vulnerable, punk’ bouncing around my head.