The Language Used to Describe People with Learning Disabilities Is Outdated

Introduction

In this essay, I will examine the roots of my belief that the current use of language surrounding special needs and learning disabilities provides a sufficient label that enables appropriate support to be provided to individuals. Due to the nature of language, which is “dynamic and everchanging”, many terms that were once used as scientific or medical terminology are no longer deemed politically correct or are viewed as offensive or derogatory as a direct result of them being used as insults (Foreman, 2005). For example, the term ‘retarded’ was first used in the late 19th century when medical texts described children with ‘retarded mental development’. This term was still written into American law, despite many people taking offence to the term, until 2010 when Barack Obama passed Rosa’s Law, which required ‘mental retardation’ to be replaced with ‘intellectual disability’. Similarly, terms such as ‘handicapped’ and ‘retarded’ were used in British literature until Warnock (1978) proposed the use of the term ‘special educational needs’ (SEN). Warnock believed that the term special needs would promote inclusion and dispel categorisation associated with the previous labels. Oliver (1990) created the social model of disability which viewed disability as a consequence of social barriers. This is a view that I now hold but had previously overlooked before studying this module.

Throughout this paper, I will explore the change in language proposed by Warnock (1978) and how this affected the thoughts and beliefs of the population. Secondly, I will explore the issues surrounding the introduction of new terminology and how this may impact both individuals with disabilities and the wider population. In order to fully deconstruct these issues, I will investigate the roots of my current knowledge and beliefs on the use of appropriate language within special education. I will draw from my personal experiences of working with individuals with a range of disabilities and will review my relationship with SEN language. Through this reflexive practice, I will have the opportunity to critically examine how my beliefs have been challenged by literature and discussion, resulting in the reconstruction of my own beliefs and practice.

Deconstructing Current Use of Language

As previously mentioned, Warnock (1978) introduced the term ‘special educational needs’ in order to promote the inclusion of disabled people and move away from the categories created by previous terms. Warnock hoped that the new term would shift the focus from what an individual wasn’t capable of to what provisions would be required to create an equal footing, and remove the social barrier disabling the individual (Norwich, 2012). The aim was to make visible the needs which were once hidden as a result of the negative labels placed on the individual.

To deconstruct the current use of language, I will discuss the roots of the beliefs I held prior to this module. When using language it is important to ensure that the label provided enables the needs of an individual to be met. Through my undergraduate study of psychology, my understanding of needs was based around theories such as Maslow’s hierarchy of needs (1943). Maslow stated that needs must be met in a hierarchal fashion, and higher needs cannot transpire until the previous need has been fulfilled. These needs are physiological, safety, love and belonging, esteem, and self-actualisation. Thomas and Loxley (2007, p.55) agree with this theory that ‘we all have needs to do with affection, security, belonging, fun, self-esteem, and self-identity’.

My work as a support worker for both adults and young people with learning disabilities was strongly shaped by my knowledge of needs. Within my role, I had to follow plans and guidelines set out by psychologists and behaviour therapists who met with my clients a handful of times per year. It was likely that this was due to the qualified medical practitioners viewing the support workers as underqualified in understanding and meeting the needs of our clients. This was a strange concept to me as the support workers know all the nuances of our client’s behaviour, from facial expressions to triggers of challenging behaviour. Due to the nature of the medical professionals being a higher rank, and my obligation to follow policy and care plans, I conformed to their guidelines of best practice. I now realise that I was engaging in ‘incarceration by smothering’ (Thomas and Loxley, 2007, p.55) by accepting and assisting the medical ‘support’ given to my clients which was not necessary to meet their needs. By focussing my energy and support on the SEN, I was renouncing the everyday needs of my clients.

I also believed that the label SEN was appropriate as it enabled the provision of services within the community. By exploring my peers’ understanding of the label through discussion, it became clear to me that, for many, the label SEN was only adopted by individuals so that they can receive the social support, which is limited to funding guided by the unspecified criteria that has evolved from the vague term that is SEN. The label is used as a tool for oppression rather than a tool of accurate representation for people with disabilities. As Foucault (1978) clearly outlined, we label and categorise ourselves by adopting identities that allow us to create social relationships and fit into social structures. We respond to others based on whether we view them to be part of the in-group or outgroup (Waterhouse, 2004). By using these labels to categorise, we subconsciously use stereotypes to form our opinions of the individual or social group. This can lead to negative connotations being associated with terms such as SEN.

Many labels can adopt negative or derogatory connotations as a result of the stereotypes associated with them. In the case of terms that are used as insults such as ‘retard’ and ‘mentally handicapped’, they once had a role in scientific and medical literature, much in the same way that SEN does now. Hastings and Remington (1993) found that over time labels like SEN, tend to become heavily loaded with negative connotations as a result of being associated with learning disabilities. The label given to individuals with SEN can be known as stigma (Goffman, 1963). This is when there is a negative reaction from others in response to the label. This creates hostility between assumed and true identities. These responses are learned through repetition. This could be a result of the media’s portrayal of people with learning disabilities, or through the misuse of language regarding special needs. By changing the way that we speak about people with learning disabilities, we can change how people treat and respond to them. Just as the negative responses are learned, the change in language could spark more positive reactions which can be learned through repetition. For many people with learning disabilities, the terms which they are often bombarded with act as a constant reminder of the barriers they face or reflect their social impairments. More often than not these individuals do not identify with the labels put on them and this leads to an identity conflict. By labelling individuals with a term they do not identify with, their voice is effectively being taken from them. Terms like autism spectrum disorder (ASD), imply that the individual is defective and requires repair.

Autism itself is simply a difference in communication and mental programming. The individuals who experience this are not malfunctioning, they simply behave and think differently. Spectrum is vague and includes a melting pot of conditions and behaviours which many people do not identify with. The term disorder comes from the medical approach and is disliked by most of the autistic community. As previously mentioned, it implies that there is something broken that needs to be fixed, which is not the case. If a more social approach was adopted and the social barriers were removed, then there would be no ‘disorder’ present. Before studying this module, I believed that this was the best term to describe autism as it is a catch-all phrase that includes a multitude of people with varying social and physical capabilities. However, I have come to the realisation that this is not the case. Around the same time I started this course, I began watching a television series called ‘The Good Doctor’. It is about a junior doctor who has autism and receives a place as a surgical resident in a prestigious hospital. The main character, Sean, struggled to gain recognition for his surgical talents simply because he had the label of autism spectrum disorder. Many believed he was not capable of being a successful doctor as a result of his communicative issues, but a mentor of his acted as an advocate and fought for his place. By simply changing his label to Autism Spectrum Condition rather than disorder, people would have fewer negative views on his abilities and would have treated him like any other junior doctor with a physical medical condition. A simple change in the label, and returning a voice to the individual, removes the social barriers and the capabilities of the individual can be restored.

Reconstructing the Use of Language

To reconstruct the notion of appropriate language, it is essential to consider the voice of those directly affected e.g. disabled people. By organising the label with the term ‘disabled’ first, it emphasises the belief that the disability is a result of social barriers as outlined by Oliver (1990). By shifting the focus away from the individual and onto the environment, the needs of the person become clearer. When external factors are viewed as barriers it becomes much easier to make adjustments and therefore transforming the disability into ability.

When considering a change in SEN language, the views of the individuals must be heard as it is their voice that is the driving force behind the change. This was evident through the removal of the term ‘mental handicap’ in the United Kingdom (Eayrs, 1993). With self-advocacy groups increasing in number globally, it is clear that people with learning disabilities are more than ready to reclaim their label and fight for their voices to be heard. Groups such as ASPIE (2019) have been created to help individuals with Asperger’s syndrome identify more positively with their condition and find belonging with others like themselves. This new term has been claimed by thousands of individuals and has promoted a more positive sense of self-identity for people with Asperger’s. It is often difficult for new terms, such as aspie, to become popular with the wider population through fear and reluctance to change. For people who have no contact with autistic individuals, they may fear that this term is offensive as it sounds ‘wishy-washy’ and informal. Veering away from medical terminology creates uneasiness with people, especially when the language is not shared through the media. Haller, Dorries, and Rahn (2006) found that in over 20 years, newspapers have hardly reduced the use of the term ‘handicapped’, showing that people are reluctant and fearful of change. If we are to reduce fear and discomfort around language and ‘political correctness’ there must be an increase in publicity for people with learning disabilities. Often people with learning disabilities are overlooked and thought of as intellectually inferior, resulting in their voice not being respected, therefore preventing them from engaging in the conversations regarding terminology and labels.

A question that we must ask ourselves when addressing the concept of a change in language is, is it truly ethical? What would be gained by changing the term? The problem with changing the language we use is that the new terms will undoubtedly adopt the negative connotations in the same way that its predecessors have. As Steven Pinker (1994) stated, we end up with a ‘euphemism treadmill’, where new ‘politically correct’ terms acquire negative connotations and the problem arises again. It has become apparent that the issue does not lie with language itself, but with the attitudes of the people who use it. Pinker (ibid) phrased this issue very eloquently when he wrote ‘the euphemism treadmill shows that concepts, not words, are in charge: give a concept a new name, and the name becomes colored [sic] by the concept; the concept does not become freshened by the name’. Just as before, the voice of the individuals who are being labelled must be heard in order to halt this ‘treadmill’. Unfortunately, I have been guilty of using terms that I viewed as ‘politically correct’ when talking to and about people in my care. By examining my relationship with language, I have discovered that I did this out of fear and ignorance. I failed to consider the identity that my clients claimed and instead forced ‘political correctness’ and arbitrary oppression onto them for the ‘greater good’ of their needs. If I had reflected on the function of the label and how it impacts each individual’s identity, I would have recognised my role in creating the barriers which disable them.

Impact on Practice

In this section, I will look to the future and address the impact that my new thoughts and beliefs will have on my role, not only as a support worker but as an advocate for those people with learning disabilities. To give people with learning disabilities a clear voice regarding the language used to describe their conditions I must act as an ‘agent for change’ as outlined by Pantić and Florian (2015). I must endeavour to remove the barriers that create inequality and ensure that all the needs of the people in my care are being met, not just the ‘additional’ needs. In doing so, I must challenge the authoritarian attitudes which are present in the care sector to ensure that I act as an advocate for those who are voiceless. I will actively help my clients engage in activities that promote a positive self-image, such as joining self-advocacy groups and interacting with people with whom they identify (Stainback et al, 1994).

In order to reduce negative attitudes and responses to people with learning disabilities, stigma must be reduced. This can be achieved, through social interaction and appropriate education regarding learning disabilities (Spagnolo, Murphy and Librera, 2008). By creating a possibility for interaction and learning, the fear surrounding ‘political correctness’ can be reduced as neurotypical individuals will have the opportunity to communicate with people with learning disabilities and hear their voice. This may challenge the status quo and may come under question by my colleagues but it is necessary as a tool for change.

Whilst reflecting on my thoughts I was able to challenge my relationship with language and analyse the roots of my beliefs. I now feel more confident as an advocate for people with learning disabilities which will greatly improve the relationships I have with my clients. I will now be able to foster an environment that promotes the abilities of people with disabilities and through the removal of social barriers.

Conclusion

The goal of this assignment was to deconstruct my thoughts and beliefs surrounding the current use of the term SEN and reconstruct the notion of language to become more inclusive. For the change in language to occur and be effective a more social approach should be adopted which places the ‘disability’ on the surrounding factors and barriers facing individuals rather than on the individual themselves.

The concept of SEN is complex and cannot be categorised into distinct groups. The current language is flawed and should continue to change in line with the movement led by the people it impacts most; those with learning disabilities. It is essential that people with learning disabilities regain their agency and that their voice underpins the new language. This cannot simply occur by a slight change in language but requires a change in focus. Rather than fostering an opportunity to further instil the insider–outsider attitudes of us vs them, an inclusive approach should be adopted and drive the focus onto us.