We cannot let COVID turn back the clock for disabled people

Guest blog as part of the future of social care series by John Casson at L’Arche

Watch John and Rebecca Tucker talking about these issues in a video here

We cannot let COVID turn back the clock for disabled people.

It’s time to say it.   The COVID response is telling people with disability: You’re different – a patient to look after, not a person.  A problem to manage, not a citizen.

It’s the return of the old institutional mind-set that says:  you’re vulnerable, and we know what’s best.

At L’Arche, and in Learning Disability England, we’re part of a freedom movement of people with and without disability, against this disabling mind-set.  In our UK L’Arche Communities, we build friendship, freedom and full lives together.

But in lockdown we’ve received hundreds of pages of regulations, to run people’s lives in care and supported living from Whitehall.

The effect on daily life is always clumsy. Often it is discriminatory, harmful, and nonsensical:

  • In one L’Arche Community in Southern England, as the whole country went to the shops and visited parents for the first time in months, double vaccinated young adults were still stuck at home because of one-size-fits-all residential care rules.
  • In another, 7 friends with and without disability share lives – same house, same kitchen, all double-vaccinated.  But PPE rules mean they haven’t shared a meal for a year.  What other household has to accept that?
  • Now, as politicians talk about moving from edict to personal responsibility, the message for people receiving support is again: you’re different.  A healthy, vaccinated, young adult with learning disability can never see the whole face of the people supporting them.  They are the only one in the park accompanied by people in masks.

The rules are undermining the relationships that are the bedrock of our quality of care. And they tell people, “you’re a patient with paid carers, not a person with friends”.

Yes, we need to understand how COVID threatens people with disability. We need to make society safe for people to live their lives.   But this means enabling people, not fencing them in in and removing their rights.

So how do we go forward, not back?

We have learnt in L’Arche it can be done – if we trust people and empower them to make the decisions for their lives.  In the pandemic, our Communities were best able to survive and thrive in the early weeks before the tide of rules began, when they made their own risk-based decisions.

People with learning disability – and those who support them –  are among the most disempowered and overlooked groups.  But if we are empowered, there is literally no-one better to make these complex choices.

Let’s exit lockdown with people with learning disability enabled, not boxed in.

Read more about Learning Disability England’s work on the future of social care here