Challenging the misconception that carers control my autonomy

Woman with Down's Syndrome sat at a table with another woman using a laptop

Simon Stevens, who has cerebral palsy, talks about his frustrating experiences with people assuming that he needs carers because he has a disability. He wants to challenge the misconceptions that disabled people ‘lack autonomy’ and demonstrate that care is used to create independence, not for the carer to have control over the person’s life.

“Who do you live with?” “When do your carers come in?”

Yes, a rude start to an article, but these are questions I am often confronted with five times a day in hospital, including in the middle of the night.

I am 46 years old and I have a severe form of cerebral palsy as well as other impairments. My biggest difficulty is my speech impairment. Because of it, people often assume I am ‘retarded’ – and named me as such. No one deserves to have their autonomy undermined.

I hate it when people assume I need ‘carers’ all the time to control me, especially nurses who look down on me when actually I am a free-willed, international disability activist.

How misconceptions around disability and care have developed

I believe this assumption has gotten worse because of the rise of the Carers Movement. Led by a number of non-disabled run charities, their intention to support carers, particularly those who are unpaid, is a positive one.

However, without truly understanding the impact it has on disabled people, the movement has unknowingly subverted the notion of interdependence over the last 20 years.

In my view, it has socially constructed the idea of an informal carer who suffers hardship by looking after loved ones who are portrayed as having no autonomy and are burdens on society.

This message and the idea that these carers save a lot of money has convinced the Government, NHS and other organisations to roll out the red carpet and allow carers to control the lives of disabled and older people.

And the upshot of this? Spending fewer resources on empowering disabled people.

I want to make it clear, I am not criticising family members and friends who, without payment, support loved ones in a manner that goes beyond the norm, such as feeding a young or older adult or changing their nappy, often by choice or loyalty.

Families in these situations need to be supported to allow them to be effectively interdependent. They need the right equipment, training and emotional support.

But not every disabled person needs care in the same way and many, like me, use them to enable independence.

Having care gives me control over my life – not to be controlled

I myself do have support but in the form of directly employed personal assistants. I have managed PAs for 28 years and they are very different from care workers.

Care workers are employed by care agencies and have to ‘look after’ their many clients by strictly following the care plan put in place by the funder. In most cases, this is driven by the local council, regardless of what the user wants.

A personal assistant, however, is directly employed by a user or family member – they become the employer. That person, in my case me, is responsible for looking after their personal assistant in terms of employment rights and at the moment providing PPE.

The role of a personal assistant is to support the user by meeting their outcomes and enabling choice, control and autonomy.

Challenging perceptions – I am fully in control of my life

For me, the assumption that I need carers to look after me 24/7 based on a perceived lack of autonomy is deeply frustrating. Once I was barked at, “Where is YOUR carer?” by a paramedic To prove a point, my reply was, “Where is YOUR carer?”.

He got hot-tempered with me and responded, ‘I am not in a wheelchair’. My response was, If I am going to be shouted at all night then the hospital is not the best place for me.”

I believe this attitude is the next big hurdle to face in order to eliminate these stereotypical views on impairments and treating all disabled people as the same or incapable.

By Simon Stevens

You can find out more about Simon Stevens or get in contact with him by visiting his website.

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