The latest learning disability care scandal makes me fear for my daughter’s future

Nursing student Leanne Patrick wants to challenge social attitudes – even among nurses

Nursing student Leanne Patrick wants to challenge social attitudes – even among nurses

Ella – ‘is she one of the bad ones?’, care staff have asked. 

As the nursing community reels from the BBC Panorama footage of alleged abuse at Whorlton Hall private hospital, those of us who are parents and carers of children with learning disabilities look on in quiet horror.

I am reminded of Winterbourne View; each scandal of this kind highlighting the injustices faced by people with learning disabilities behind closed doors. But persistent, smaller injustices are happening every day, and health inequalities continue to grow.

All-too-familiar injustices

My interest in this is two-fold – as a mental health nursing student, I am sadly well acquainted with these injustices, having witnessed the avoidable use of restraint and failure to engage people who are vulnerable to health inequalities.

I am also a mother who has been asked by care staff ‘how autistic’ my daughter is and ‘is she one of the bad ones?’ more times than I care to remember. Although I am deeply wounded by comments that dehumanise my daughter, I always find the courage to reply respectfully.

Many of the healthcare professionals we encounter fail routinely to make adjustments for my daughter and offer parenting advice in place of support for her needs. It is a fight just to be heard, and ensuring she has access to important interventions for her physical health is frustrating. I fear for families less able to navigate these difficult interactions.

Leanne Patrick and daughter Ella.

Education on learning disabilities and autism isn’t a priority in health and social care – it’s an afterthought. And while basic learning disability education is an important starting point for front-line staff, it isn’t enough. It doesn’t account for moral failures and systemic abuse like that alleged at Whorlton Hall, where care staff and Care Quality Commission inspectors raised concerns that came to nothing.

Who do we value?

This is about what and who we value as a society. We live in a time when some think it's preferable to risk losing a child to vaccine-preventable diseases – even though the evidence shows there is no link to vaccination – than for their child to have autism.

People with learning disabilities are dying up to 20 years earlier than their peers. I am facing the very real possibility of burying my beautiful daughter, simply because people don’t know or care enough about her disability or her rights. And if I’m lucky enough not to lose her, I face the equally real possibility she will be abused in care when I am no longer here and she has nobody to protect her. I have lost countless hours of sleep worrying about this, with the cliff edge that represents her adult years standing before us.

The unfairness of ‘othering’

Part of the solution lies in changing the social narrative of people with disabilities as ‘other’. My daughter is not ‘other’, she is all of us. She likes unicorns, pizza and splashing in the sea. She draws elaborate picture stories and beams with pride when we pin them to the fridge. She holds my hand and sings as she drifts off to sleep each night.

My daughter does not deserve to be judged on ‘how autistic’ she is or how she behaves in her most vulnerable moments. She deserves the same standard of health and social care as anyone else. She deserves to be loved.

Ella loves unicorns, pizza and playing
in the sea – just like any child.
Picture: iStock

Ours is a segregated world in which people with autism and learning disabilities remain invisible. Their voice is less prevalent in news media, film, reality television shows and beyond – they are framed instead as burdensome, scary and defective. As ‘other’.

We must challenge – and listen

If the nursing community wants to see change, challenging the status quo and additional training are essential. These are the basics we need to have in place before we can address health inequalities and the esteem in which people with learning disabilities are held.

And for those of us who know and love someone with a learning disability, let’s talk openly about them and ensure they are visible so that their voices can be heard. My daughter’s name is Ella, she has autism and learning disabilities.

The most important thing Ella has taught me that I would like everyone else to know is that you don’t need words and conversations to connect with someone. You don’t need words to know what people like and dislike or even to understand their more complex thoughts. To know them, you just need to notice them. 

Leanne Patrick is a final-year mental health nursing student at the University of Stirling and chair of the Scottish Health Students Council 

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