As a disabled person, I was disappointed to miss the London School of Economics (LSE) online event “Implications of the COVID-19 Crisis for Disability Policy”. Streamed on Facebook, and starring an impressive list of speakers (Liz Sayce, Baroness Jane Campbell Clenton Farquharson and Neil Crowther), but was able to watch it as a BSL supported video on Facebook.

It is also available as an audio Podcast on the LSE site through the following links: 

Video:

https://committees.parliament.uk/work/320/unequal-impact-coronavirus-disability-and-access-to-services/ve

Audio Podcast:

Image shows head and shoulders pjhoto of BUK trustee Vivienne Stone

http://www.lse.ac.uk/lse-player?id=4921

Amongst the various issues discussed, one resonated with my recent experience and ongoing concerns about the future - the increased use of the term ‘"Vulnerable People"’.

After years of being largely consigned to the official ‘behind closed doors’ assessment meetings,  "Vulnerable People" sneaked out of its box, and straight into the hearts and minds of everyone but the people it allegedly defined.

Definitions of “Vulnerable” vary slightly  in dictionaries but the following (from the Cambridge dictionary), gives a general idea: “able to be easily physically, emotionally, or mentally hurt, influenced, or attacked.“

‘Able to easily’ implies a situation applicable to anyone or anything’’. However, when you tag "Vulnerable" to individuals and groups, it is perceived as an intrinsic and dominant characteristic, negating all other factors that identify us as individuals. “Vulnerable” is absolute, it does not recognise changing circumstances.

I imagine, if you were to ask those who reinstated this term (primarily Government) why they ignored the body of evidence gathered over the years on labelling, their justification would probably be something like “to determine those of us requiring ‘protection’, and to clarify our needs and how best to meet them”.’ It’s unlikely that our rights would be a consideration in that discussion! 

However, on learning that

  1. Hospitals may not treat us - we did not feel protected.
  2. Some of us were asked to sign ‘Do Not Resuscitate’ Agreements - we did not feel protected
  3. The Coronavirus Bill 2020 Bill would remove important safeguards and services, - we did not feel protected.

Some people were contacted and given instructions about shielding, but I do not know of anyone who was asked about what they needed (other than from people in their own family/social circles).

It is then perhaps not surprising that the label ‘"Vulnerable People"’ caused a significant amount of confusion and resistance amongst us.  We simply did not recognise ourselves in the listed categories! 

We were not alone in our confusion! Advisors and service providers also struggled with an accurate and helpful interpretation of the guidance provided. Perhaps that is why so many disabled people were not contacted?

Inspired by this emotive term, authorities prescribed and delivered their ‘solutions’ as we struggled with “do they mean us?” and sought alternative sources of support.

Reasons why we did not get the support we needed included:

  1. The guidance did not reflect who we are/how we perceive ourselves.
  2. We did not all neatly fit into the categories listed.
  3. We do not have the same aspirations or needs.
  4. We were not asked about our needs.
  5. Those that asked for support did not get an adequate and timely response.
  6. We do not all have the same aspirations or needs.

The ‘one size fits all’ approach resulted in  solutions that ignored our identities and our needs  e.g in the distribution of food boxes:

  1. Some went without food because the boxes did not reflect our dietary/medical or cultural needs. https://www.theguardian.com/
  2. Some did not have the practical help needed to prepare the food sent to them.

Others were unable to shield safely because of a lack of PPE. 

Our history is littered with examples in which the imposition of emotive labels enabled others to:

  1. Create categories of risk and capacity that divide and isolate us.
  2. Dismiss the ‘expertise’ gained through our lived experience.
  3. Promote the development of segregated services that justified our exclusion from full participation in society.

The response to COVID19 confirms how easy it is to undo years of campaigning by organisations of disabled people and strip us of our Human Rights.  

Put simply, ‘"Vulnerable People"’ do not get to control their own lives. ‘Protection’ overrules independent living and denies us access to education, employment, and service provision.   If we do not push back, then it will shape post COVID recovery plans, form the rationale for further exclusion and the ‘go-to’ response for the next pandemic/crisis.

As we develop our strategies for supporting disabled people, Breakthrough will:

  1. Challenge the use of "Vulnerable People"
  2. Influence public bodies to actively involve and employ disabled people in the development of their Emergency Planning Strategies.
  3. Encourage and support disabled people's participation in politics/social change, be it through involvement in national/local political groups, disabled people's user-led organisations, and social media discussions including the Bunker, a Facebook Group set up and led by disabled people.
  4. Support the call for an Inquiry into the unequal treatment of disabled people during COVID 19.
  5. Promote the Women and Equalities Committees' Call for Evidence on the impact of Coronovirus on disabled people (closing date 13 July 2020) Unequal impact? Coronavirus, disability and access to services - Committees - UK Parliament