Service user voice: I can think for myself

“Is your carer there?” is a question I am often asked on the phone or by the police and other officials. While this seems a harmless question, it makes my blood boil.

These four simple words symbolise how society actually sees disabled people, and how authority figures and the general public still find it hard to interact with them, especially with those who have a speech impairment.

While many disabled people are visually “acceptable” and treated as rational, thinking human beings, there are some whom society still has a problem accepting as human.

As a drooling, helmet-wearing, nappy-using spastic, I tend to fit not so nicely into their world view and am clearly seen as unable to take control of my life.

When someone asks for my carer, they are actually informing me they do not believe I am, or can be, in control of my actions and that I need to be “looked after”. It also shows an impatience and unwillingness to accept my access requirements.

It is disheartening when this attitude is widely endorsed within professions such as the police, nursing and even social work in some cases.

As an experienced, independent and active citizen, it is frustrating when I need to prove my right to participate in the simplest of tasks. A few weeks ago, I went to board the Eurostar train and encountered a mountain of barriers. I was treated as a terrorist simply because I was disabled and on my own. I was interviewed by two police officers, and they wanted to ring my carer.

What annoys me the most is that they don’t realise my apparent “carers” work for me and generally do not have any idea what’s going on in my life, so are not in any position to make a decision.

When someone refuses to talk to me, I often have to tell my carers what to say, and at this point I tend not to mince my words.

So what’s the answer? Well, in a environment where the service user is king there needs to be better awareness among all the public services that a disabled person is perfectly capable of interacting with them. They need to have a better understanding of the roles of carers and talk directly to disabled people as equal adults.

In the meantime I have a more immediate solution: I ask for their carer.

Simon Stevens is chief executive of Enable Enterprises