November 22nd to December 22nd is Disability History Month (DHM) in the UK: you can read more about it here.
Having been around a while myself now (!), and being in the process of compiling a collection of pieces I’ve written in the past, I thought I’d post a few of my articles here in the run-up to the launch of DHM. This piece is about the power and impact of ‘naming’ but then ventures further into understanding disability. I’m deliberately not changing any part of the articles – except contact details – because they are of a time, indeed – part of our history.
A Rose by any other name…
Would smell as sweet. Of course. The implication being that the substance or content is the same, no matter what the name. And in a superficial sense this is true. As a disabled woman I remain the same person no matter what you call me — or do I?
I often get called a ‘service user’ or ‘client’; I rarely get called ‘handicapped’ these days but I have been called ‘cripple!’ in the street. And at the airport I was called a ‘wheelchair charlie’ by the ground crew. My children call me Mum.
In truth, the names we get called — and the status of the people doing the naming — can have an enormous impact on our lives. As another old saying goes ‘mud sticks’, and if you refer to someone in a particular way for long enough then both the named and the namer come to absorb the underlying message which describes and categorises a person or group of people.
Disabled people have traditionally been ‘named’ by the medical, welfare and charitable powers and described in terms of what is ‘wrong’ with us. Many names which are now seen as insults are derived from medical terminology — mongol, spastic, cretin, idiot — even the more generic ‘invalid’, ‘handicapped’ and ‘disabled’ have roots in negative concepts of being at a disadvantage, being neither valid nor able.
Language is a moveable feast and the disabled people’s movement has been built on an examination of what it really is to be a disabled person. Disabled people have debated and analysed their situation and arrived at ‘the social model of disability’. This is in contrast to the ‘medical model of disability’ which says that the individual has something wrong with them (eg, they cannot hear) and because of that they are unable to carry out a whole range of activities, such as holding a conversation and using the telephone.
The social model says that all people are different but that society does not take account of everybody’s differences; so, for example, if all children learned British Sign Language (BSL) at primary school then deaf people would not need to lip-read and use interpreters. If the existing technology which produces text telephones were incorporated into everyday phone systems then deaf people would have access to this form of communication. The people would be unchanged, no miracle cure needed, but the barriers would be removed.
This rather simplified explanation demonstrates that the social model provides the solution to most, if not all, of the exclusion that disabled people face. If society were to remove the barriers that it constantly places before us, then the disability would be removed.
The disabled people’s movement has adopted the words ‘impairment’ and ‘disability’ to describe ourselves and our situation. It is important to understand the distinction.
Disability is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity. Impairment is a characteristic, feature or attribute within an individual which is long term and may or may not be the result of disease, injury or congenital condition.
Disabled people, then, are those people with impairments who are disabled by society, this includes people with physical impairments, people with visual impairments, deaf people, people who are hard of hearing, people with learning difficulties and people who have or have had mental health needs or mental distress. Impairment neither causes nor justifies disability, which, like racism or sexism, is discrimination and social oppression.
It is easy to see why the term ‘people with disabilities’ is unhelpful — it implies that we ‘own’ the disability, while it is society which disables us.
I was once in a conference workshop explaining the social model and a participant shook his head and said ‘Phew, that’s a bit heavy isn’t it?’ Well, maybe it is, but without a clear analysis of what it means to be a disabled person and, leading on from that, some commonly held understanding of where the problems arise and how to tackle them, then the situation of disabled people in our society will not improve.
The social model also requires that, instead of grouping disabled people into, for example, deaf people, blind people, wheelchair users and so on, and trying to identify solutions for individuals, we look instead at the common barriers which exclude disabled people from mainstream activities and services.
These barriers can generally be grouped under three headings, namely, physical, organisational, and attitudinal. Physical barriers are steps, stairs, inadequate signs, lack of visual fire alarms, and so on, while organisational barriers are the systems and processes which exclude us, even though the environment may be accessible. A classic example is the ‘accessible’ toilet, stuffed with mops and buckets (go and look). Or maybe your organisation has text telephones, but neither trains staff to use them nor proactively publishes their availability.
Finally, attitudinal barriers underpin all the others, and continue to discriminate against disabled people in all walks of life. There is plenty of research to show that the attitude of employers, for example, is a major reason why disabled people do not get jobs. The traditional view of disabled people, as passive, dependent, and needing care, prevails in all walks of life, and assumptions are made about our wants and needs. We are not necessarily thought of as partners and lovers, parents, or children of elderly dependent parents. These stereotypes influence service planning and delivery and ensure that disabled people continue to be excluded from mainstream provision.
In terms of healthcare and the widest range of health services, disabled people are seen in a very particular way. Thus it is that no matter whether I present at the clinic with athlete’s foot or pregnancy, it’s all viewed via my impairment. Services aimed specifically at disabled people — rehabilitation services, for example — are generally designed and implemented in an accessible way, but mainstream services are a different matter. First, disabled people need to know that the full range of healthcare services is accessible to them throughout their lifetime, from school clinics and ante-natal care to sports injuries clinics and services for elderly people. Second, disabled people need to be confident that they can accompany and support their children, friends, partners and parents in their access to healthcare.
This is, of course, a pretty tall order and if it is tackled from the medical model approach it will never come remotely close to being achieved. The social model, however, requires the removal of barriers, and once removed the benefits apply to many, many people, not just a single person.
In order to remove barriers we must first identify them: this is not the simple process it might seem. Many physical barriers are easily noted — those steps at the front entrance, the poor lighting in the main corridor, the lack of an induction loop at reception — but it is easy to overlook other physical barriers, while organisational and attitudinal barriers are much harder to identify and move.
Expert input is required from disabled people’s own organisations which have built up a wealth of experience in this area (for a local contact call the UK Disabled People’s Council) and can often provide advice and training on all aspects of access.
As Humpty Dumpty said: ‘A word means exactly what I intend it to mean, no more nor less’. In terms of planning, delivering, monitoring and evaluating services it is essential that we all understand the terminology we use, and this is why definitions are so important; they underpin our understanding.
The social model is still a new way of understanding the situation of disabled people, and requires a whole new mind-set for many people. But the last century has surely demonstrated that the medical model has done practically nothing to effect change for disabled people. The tremendous changes of the last 15 to 20 years in relation to our activities and access to mainstream society demonstrate the success and validity of the social model.
And finally. People often reveal one of their greatest worries as ‘saying the wrong thing’. Don’t let this stop you exploring the issues with others — by ‘saying the wrong thing’ you will enter into discussion, exchange ideas, and widen your understanding. Above all, have the debates and make the changes.