LeDeR Report 2019: Expletives Deleted

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Written collaboratively by the IMAS facilitators

Here We Go Again…

The 2019 LeDeR Annual Report was published 16th July 2020.

“Our updated data suggest that the disparity between age at death for people with learning disabilities (aged 4 years and over) and the general population (of all ages) in 2019 was 22 years for males and 27 years for females”

These findings are not new. For a long time, we have had heard and seen many different reports looking at why people with learning disabilities are dying younger than they should. Have these reports been read? Have their contents been noted? Have they resulted in any change?

We find it outrageous the health inequalities mean that people with learning disabilities are dying younger than the general population and that people with a learning disability are more likely to die from avoidable causes of death.

What adds insult to injury is the lack of progress in addressing these persisting inequalities.

Motivation for Change

Does it need the death of a loved one to provoke a reaction?

Of course not. Is it a systems problem? Are systems unresponsive or complacent?

It is written that every system is perfectly designed for the outcomes it gets. We have also heard it said that people with a learning disability are “hard to reach” or “a challenging” group to work with. We reject this. Our experience in Mixed Ability Sports is exactly the opposite. Our teammates with learning disabilities are often more straight forward and open than the general population. We are experts at overcoming barriers. We fear that the “hard to reach” excuse is some kind of shorthand for “easy to ignore”.

Tom, one of our Mixed Ability teammates, describes dehumanising experiences whilst engaging with healthcare.

“When I go to the hospital the Doctors talk to the person with me about my illness. I want them to talk to me.”

He is not alone and in a recent workshop, Tom’s experiences resonated with many of the IMAS Facilitators. This is a type of “othering”: seeing people as fundamentally different leading to ignoring, failing to listen, failing to notice, failing to engage with us.

Head, Heart, Hands: ambitious for better

If your head is not switched on to try to understand the atrocious problem of persisting inequalities: it should be.

If your heart is not troubled by avoidable death, loss and grief: it should be.

If your hands’ only response is hand wringing: we challenge you to do more.  We are ambitious for better. We want to be involved in decisions about our environment and our care (from design to implementation), with self-care at the core. The shocking mortality statistics in the LeDeR publication are the tip of an inconvenient iceberg. The real work here is about supporting and working with people to have the best quality of life possible.

Multiple Interventions Needed

This requires us to look a lot further upstream at the determinants of health. It is likely that a lot of small actions will make a greater impact on people’s lives than a single magic bullet.

These include:

  • Valuing people, creating worth, purpose and belonging
  • Improving access to healthy environments
  • Supporting healthier lifestyles
  • Making good reasonable adjustments
  • Working together as equals and not seeing people with learning disabilities as passive recipients of service

A Call to Action!

Mixed Ability Sport can help. Involvement with Mixed Ability Sports improves mental and physical wellbeing, builds social capital and belonging, creates networks of empowered advocates.

Mixed Ability Sport has the power to transform cultures and systems. We could call this “re-humanising”.  When people see each other as teammates with common goals, other labels disappear and we begin to see the person again. We begin to understand our shared responsibility to find solutions based on peoples’ strengths. This impact was noted in an evaluation of Mixed Ability by Leeds and Loughborough Universities. As experts by experience, we have designed and delivered training to 600 health or social care workers, involving them as participants in Mixed Ability sports. This training flips the traditional model of “learning as knowledge transmission” and is often the first time that a health or social care professional has been taught by someone with a learning disability in a formal educational session.

You can support IMAS by signing our Manifesto, by promoting the Mixed Ability model in your sport or club, or by sharing the lessons of Mixed Ability beyond sport in your organisation.

The Mixed Ability Inclusion In Sports Class.

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