When people – not all disabled people – are unspeakably or ridiculously different from the norm, people understandably stay away, or work to trivialise. We aren’t mindless bystanders, to be frightened by and avoided. We aren’t mindless victims, to be cast aside.
This is how every disabled person can feel, when their disabilities make it impossible for them to fit into the cultural setting and forget about themselves, which is just about all we want. What makes it difficult for us is that, firstly, we are different, the result of physiological and psychological factors, being among the least likely to understand, associate, and connect with the supposed norm; secondly, we are socially excluded from this norm, and cannot rely on our friend or family to be social or care for us.
This doesn’t mean we are unspeakably or ridiculously different to the norm, it means we’re different in a way that makes it difficult to conform to the stereotype. In principle this should mean that we are inside and outside the norm at the same time – sometimes our actions and beliefs are contrary to our disability, sometimes it is our disability that obstructs our ability to do something.
Who keeps track of the existence of the laws of what English is supposed to mean, is the cause of endless confusion and mockery. Legal teams, clinicians, lawyers, therapists, academics, and everyone connected with treating the disabled are in a constant state of ignorance, with little understanding of disability, or of the basics of language.
The lack of understanding of disability, combined with a lack of awareness of how to help us, causes alienation and, often, mental health problems. Many individuals who are close to disabled people who don’t wish to be visible (including their own families) are afraid to openly acknowledge the disability of their children, grandchildren, or other relatives; they don’t want to represent their children or grandchildren, and instead attempt to manage the disability by turning a blind eye.
Sometimes individuals who are friends or relatives are so concerned about our lack of “normalness” that they behave in a way that sets us up for ridicule, or alienates us from our friends, family, or community. Seeing ourselves as significant, powerful, and worthy of respect can be terrifying, and instead, some people intentionally make their friend, family, or society think less of us, or the things we do. We can feel out of touch, or unable to participate in normal activities.
The language that both the privileged and the vulnerable use in describing “ordinary” people is often problematic. How to describe a person with learning disabilities? How to describe those with a disability who don’t want to be labelled? How to properly describe disability? How to ensure that a person’s correct position in society is acknowledged in schools, universities, and workplaces?
Even when disability and the language concerning it are understood, understanding the depth of normalisation, and how that normalisation has created a social prison for disabled people is hard work. Normalisation is a subtle process, and is often invisible. A person’s change in physical appearance is only ever noted as a surprise, and only rarely is their language. It is in moments like this, when people are familiar with us, and try to make sense of us, that we start to feel socially alien.
Language is the language of diplomacy, negotiation, legal means of reaching people, and access to healthcare. Everything that is normally reserved for money, lawyers, and arguments is reduced to language.
How to describe disability – and what to describe it – is an especially tricky problem. Deaf people and people with multiple sclerosis can talk about the fact of their disability and their condition. They accept that they have a disability and they want others to understand it. Deaf people and people with multiple sclerosis understand that it is vital that we are understood.
Language is the language of health and wellbeing and people like me are the people who make it work, and how we communicate with others is important to their health. The difference between unspeakably or ridiculously different to the norm (should have a headline: “unspeakably or monstrously unreasonable”) is vital to our survival, and the language we use is of vital importance in how we are treated.