Disability language and best practice 

Written by Victoria Bartle - 11th July 2022 

A full list of sources and references can be found at the end of this article.

 

Disability is the one minority group that you can become a part of at any time. Accidents, disease and chronic illnesses - as well as simply just getting older - can all lead to disability. Like other minority groups, people with disabilities often face discrimination, stigma and stereotyping which can cause irritation, distress and can even worsen some health conditions. 

 

I became disabled over a period of time and have been shocked and sometimes appalled at how I am now treated and spoken to. Thankfully I am rarely subjected to overtly offensive behaviour and language, however I am often worn down by the continual ableist micro aggressions that I experience regularly. With this in mind, it is worth thinking about how you would like to be treated and spoken to if you acquired a disability - and, conversely, considering how you treat, behave around and speak to others with disabilities.

 


Why disability discrimination and stigma takes place 



“If we could separate maturity from support needs in the minds of people without disabilities, it would help society redefine what acceptable interactions with disabled people should really look like.“


 

Ableism (discrimination against people with disabilities) in society stems from historical prejudices and treatment, as well as today’s media, literature and culture. Language, law and customs have all had a detrimental impact on how people with disabilities are seen and interacted with today.

 

For example, the term ‘mental age’ has caused problems for people with intellectual and cognitive disabilities as they can be treated in a manner that matches what has been defined as their mental age and not their actual age. It was first used in the US in the early 20th century and started alongside the eugenics movement, where people with disabilities were seen as a drain on society and something that should be ‘fixed’. They also had the ‘ugly law’[i] in the US between 1867 and 1974, which meant that anyone who was deemed to be disfigured could be fined and removed from the public view and put into a poor house. Additionally, early US immigration policies refused entry to those with disabilities as they were not seen to be able to add any benefit to society[ii]. 

 

British disability history follows a similar path with anti-discrimination laws only coming into effect in the 20th century. The prevailing attitude before then was to hide people with disabilities away in workhouses or mental institutions[iii]. Unfortunately, we still see this kind of prejudice manifest in different ways. Recent campaigns to change the laws around abortion to allow foetuses to be aborted at 28 weeks if they have severe disabilities is just one example of this. We also witness people with cognitive and intellectual disabilities struggling with issues around the right to have children, perhaps being forcefully sterilised. Plus, there is much debate around the ethical and legal issues relating to genetics and parents being able to remove genes that are seen as faulty, disabled or, simply, not what the parents want. 

 

Mental age is also used as a tool to restrict and control people with cognitive disabilities as they are sometimes assumed to be incapable of looking after themselves and making their own decisions. This control has been extended to include people with physical as well as intellectual disabilities, infantilising many more with the attitude that having a physical disability also means that you have mental impairments. It is as though people assume they know better than us and should be making decisions on our behalf. 

 

As we get older, develop, change and learn new things, our opinions and needs also change. But the people providing care for us might make decisions based on our previous ideals and goals. However, living with a disability, as well as simply maturing, can often change our outlook on the world, which may then change what we want and need. All too often, we are treated in a childlike manner.[iv] “Being an adult does not mean that one lacks support needs, just as having support needs does not mean one is essentially a child.”[v] 

 

If we could separate maturity from support needs in the minds of people without disabilities, it would help society redefine what acceptable interactions with disabled people should really look like. In reality, we all have different needs and abilities, and seeing a person with a disability as the disability and not a person, can lead non-disabled people to make assumptions, which in turn affect their interactions with and treatment towards us.

 


My personal experiences of stigma


 

“It often feels as if having a disability means that anyone can ask you questions and get you to justify your behaviour or use of disabled facilities.”


 

Due to my disabilities I often have to ask people for help, and this can be perceived as a complete lack of independence. Helping my friends and family learn more about my health issues in order for them to better understand what I’m going through has been beneficial, but it has also meant that they now view me as more vulnerable, weak and always in need of help and support. I appreciate that it’s coming from a place of kindness, but it also means that I am often viewed in the child role in the relationship and I have to put a lot of energy into managing my own behaviour, tone and vocabulary in order to maintain my status as an adult.

 

There is also an almost implicit belief that you have no right to privacy. Like a celebrity, or a child, people feel they have the right to approach you at any time, offer unsolicited advice, assistance and ask personal and invasive questions, as well as challenge your behaviour and the reality of your disability. I get asked about my conditions all the time, even by random strangers. 

 

My sister is always amazed at how many people ask me what I’ve ‘done to myself’ when we’re out and about using my mobility scooter or a walking aid. People tend to assume that, because of my age, there must be a short-term reason for my mobility issues. It often feels as if having a disability means that anyone can ask you questions and get you to justify your behaviour or use of disabled facilities. If you decline any help offered, or suggest that a question is a bit personal, or none of their business, then you are often perceived as the rude one - the disabled person with a chip on their shoulder who should be nicer to others who were just interested or trying to help. 

 

An offer of help from a friend or family member if they see I am struggling is kind, but from a stranger it can be a bit unnerving. I would personally prefer to ask for help if I need it, as over-offering can get irritating with questions such as ‘shall I carry that for you?’, ‘do you need an arm?’ or shall I come with you? It is nice that others are concerned about my welfare, but I am a grown woman who is perfectly aware of my own limitations and what support or help I need.

 


Carers, age and independence


 

“If you are never given the opportunity to develop the skills required to live independently, then you will never have them.”


 

There are other factors that I think also have a big impact on how people interact with you when you have a disability. These include who your carers are, how old you were when you became disabled, how you see yourself and your disability, if you work or not and how independent you are.

 

If your parents have been, or currently are, your carers, this automatically puts them in a position of power and control and, as you become an adult, or move towards having professional carers, it becomes difficult for your parents to alter their behaviour. When they should be treating you as an adult, they might continue treating you as a child who needs their care. It is already difficult for parents and children to move into adult relationships, but if you add disability to the equation where a parent obviously wants to protect and do the best for their child, this can instead stifle our ability to develop skills and therefore independence. 

 

We all assume different roles within our family units, and stereotypes of ourselves from our childhood can be difficult to shake off. I have found that friends who needed care since childhood, and whose parents provided that care, often find that the parent/child dynamic persists as their health improves and even beyond their leaving home. This is far more apparent in these situations compared to those of us who have become disabled as an adult. I would assume that it can be harder for a parent to treat their child as an adult if they have never seen them live independently, or are still providing care for them. It skews the dynamics of the relationship so that the parent stays in the protector and decision maker role, always believing that they know best for their child. For example, I had some financial difficulties after leaving university and had to move back in with my parents, so twenty years later I am still treated as if I can’t manage my money. 

 

Continually treating people with disabilities as children can become a self-fulfilling prophecy. If you aren’t challenged, stretched and encouraged to do things for yourself, then you will become more reliant on others. When it comes to independence, if you don’t use it, you lose it. If you are never given the opportunity to develop the skills required to live independently, then you will never have them.

 

Supporting those that you care for to advocate for themselves, treating them and others with respect and always interacting with them on an adult-to-adult level will make it easier for them to accept care and support. Please also remember that people with more restrictive disabilities still need that respect - even if they are unable to effectively advocate for themselves and cannot always remind you to do so.

 

Being reliant on benefits is also a big issue as it is often seen in a negative light by family and friends, as well as by ourselves. Being dependent on the state can be perceived as not looking after yourself and requiring help and support for nothing in return. If you rely on benefits then people feel that they can judge you, your behaviour, and also dictate how you spend the money you receive as you are not working for it. The benefits system also infantilises adults as we have to continually explain, prove and justify our disabilities and the support and adjustments that we require. 

 

 

Media portrayals, stereotypes, and language 


 

“There does not seem to be any room for nuance in the public mind when it comes to disabilities, and this enables the stereotyping which, due to its long history, can be difficult to challenge.”

 

 

There are a number of pervasive disability stereotypes that contribute towards increased ableism. These often become apparent in the language and tone used when speaking to people with disabilities.

 

Inspirational or superhuman 

 

I often get called ‘inspirational’. People say that they are really impressed with how I manage ‘in spite of’ my conditions, for instance, the notion of travelling by myself. I travelled prior to my health deteriorating, and I don’t see it as inspirational, instead it’s just physically a bit more challenging. I am aware of the assistance available, make use of what I need and adapt where I choose to go and what I do, to ensure that I can manage. I don’t think that is inspirational, it’s just me getting on with my life. 

 

This extreme view of disability has created the term ‘inspiration porn’, which has evolved from social media and the mass use of positivity quotes and stories that show disabled people doing everyday things as an inspiration.

 

I believe that those doing truly amazing things are people like the Paralympians or others with disabilities who achieve outstanding goals, rather than those of us just living our lives. But this ‘inspirational’ narrative is so imbedded in our culture that we barely notice it. It is often seen in superhero films where characters like Iron Man, Daredevil and Professor X use and accentuate their disabilities until they become superpowers, which actually does very little to forward the inclusion of people with disabilities. 

 

The superhuman stereotype is also a challenge to those of us whose disabilities restrict us in pushing through to ‘achieve greatness’, particularly when the media sends the message that “there’s no such thing as can’t”. For those of with conditions where excess exercise can actually worsen our wellbeing, these messages can make us feel like we’re failing. 

 

Therefore, it’s key to note that the message that anything is possible is not a realistic one to push on society, as accepting your limitations and focusing on what you can do goes a long way towards dealing with life in general and not just disability.[vi]

 

Needing to be saved 

 

The overarching feeling in society is that we need to fight and overcome our disabilities, and that we need to try hard to get past our limitations. This is not a realistic or useful view of disability and health in general as often pushing through an illness actually makes it worse, or we can end up infecting others as seen in the current pandemic. In literature and other forms of entertainment, there is usually a non-disabled person in the narrative who saves or rescues us and helps us to cope with our disabilities. The film ‘The Upside’ is an example of this narrative as the Kevin Hart character effectively pulls the Brian Cranston character back into the world after an accident which left him quadriplegic. This storyline gives able bodied people the idea that we need saving, and that they have the right and the duty to do it. We are pitied and looked down on as our lives are seen to be an entirely negative experience that other people would hate to have.

 

Evil and untrustworthy 

 

Lots of villains in fiction are portrayed as having physical disabilities and deformities, suggesting that people with disabilities should be feared and avoided. People with mental health conditions are stereotyped to be a danger to the public and community supported housing is often seen as a negative thing. Wicked witches with facial disfigurements, dwarves and burn victims are all portrayed as dangerous and negative figures in fantasy stories, which ultimately leads to people in real life with visible deformities being treated with fear and trepidation. This definition of disability is obvious in the ‘ugly laws’ which were a legal reality in the US until fairly recently.[vii] Films like ‘The Greatest Showman’ and ‘Split’, as well as numerous character villains like Captain Hook or Darth Vader, who have facial disfigurements[viii],continue to promote this negative stereotype of disability as a visual link to an evil and violent personality.

 

Infantile

 

Think about the last time you heard someone talk to a disabled person. Did they speak slowly and in a loud voice, using small words and over-bearing encouragement, leaning over and generally interacting as if the person they were communicating with were a small child? This is an ableist interaction led by the assumptions that the person without a disability should be taking charge. They become the decision maker and take on the ‘parental’ role in the relationship, (in terms of the transactional analysis parent, adult, child relationship model)[ix]. This behaviour stems from societal stereotypes of people with disabilities[x].

 

There is an argument that altering tone and language to interact with a disabled person in a childlike manner is an unconscious bias, and not one rooted in conscious thought or underlying animosity[xi]. In my experience, people are usually genuinely trying to be nice and think that they are doing the right thing. In reality, it comes across as patronising and diminishes the person with disabilities to the role of a child in the relationship. 

 

I witnessed an example of these perceptions in an interview on the Victoria Derbyshire programme, interviewing a lady with Down’s syndrome and her mother about Amazon continuing to allow disability discriminative slogans to be sold on their site[xii]. They were both answering questions, but the more pertinent questions were directed to her mum. The interviewer even made a comment “Thank you Heidi you’re a ledge[xiii] at the end of the interview which was the type of thing that you would say to a small child and not a grown woman. It stuck out to me even more as she ended the conversation with Heidi’s mum by saying “thank you very much Liz”. 

 

This bias is also seen when people speak to the carer of a person in a wheelchair, or the person in the wheelchair is condescended to and it is assumed that they have limited mental capacity as well as physical disabilities. External innocence and asexuality are also assumed to be part of disability, and people are shocked if you have a partner. These kinds of stereotypes are seen in films like ‘Forest Gump’ and ‘Rain Man’, where the characters are portrayed as childlike, unable to make positive decisions about their own lives and should not be in relationships due to their disabilities. 

 

A big issue is that non-disabled people have a tendency to see disability as the extreme version of a condition. For example, a belief that all wheelchair users cannot use their legs at all, that people with visual or hearing impairments are either completely blind or deaf, and that people with cognitive or learning disabilities are at a pre-school level of intelligence. There does not seem to be any room for nuance in the public mind when it comes to disabilities, and this enables the stereotyping which, due to its long history, can be difficult to challenge. 

 

Conversely, due to this extreme, worst-case scenario thinking about disabilities, suspicion can arise when somebody, for example, gets out of a wheelchair and walks a little, or uses aids some days and not others. This perpetuates another extreme stereotype – that of the ‘faker’.

 

Fakers 

 

A large number of people with disabilities are seen to be faking, or exaggerating, their experience for financial gain or to ‘outwit’ someone. This attitude is rife in popular media with benefit fraud being portrayed as a massive drain on the economy and society, when it is in fact only a very tiny proportion of those claiming benefits who are guilty of this[xiv]. This adds to the difficulties faced by people with fluctuating and invisible disabilities, as it does not make sense that we are not continually wheelchair bound, or unable to climb the stairs every time. The stereotype of extremes of disability mean that people are simply unable to comprehend the reality of life with a fluctuating disability. The faker stereotype also seems to allow people to challenge you in your use of disabled facilities, like using a disabled parking space or toilet, as people assume that if you are not visibly disabled, then you should be challenged when accessing disabled facilities.

 

‘Death is better than disability

 

The book and film ‘Me Before You’ leans to the extreme of this narrative, where being disabled is worse than being dead, and that we should mop up as much joy as we can before ending our lives, as we are a drain on society, our loved ones and a burden that others shouldn’t have to live with[xv]. The statement ‘I’d hate to have what you’ve got’ and similar comments have been said to me as people with no disabilities believe that their lives are better, and it must be horrific to live like I do. Pity takes over as people are unable to understand how you can have a good life, or enjoy relationships, happiness, goals and aspirations when your life is so challenging and limited. 

 

The medical model of disability has historically led the negative view of disability in society until recently when we moved towards the social model where it is seen that the world itself is the challenge rather than the actual disability[xvi]. The world needs to be adapted or adaptations provided so that we can access it with equity, and not be seen as needing to be cured or fixed of our disabilities and forced to adapt and live like those without disabilities.


 

What can you do to challenge stigma and discrimination?

 

The media obviously has a role to play in reducing ableism, and increasing representation is an excellent place to start. People with disabilities actually make up about 18% of society, yet we are only seen in 1.6% of film characters and 0.5% of TV characters, with over 95% of these characters being played by non-disabled actors[xvii]. This lack of representation increases the pervasiveness of disability stereotypes. Even where there is representation, it is often unrealistic and lacking in diversity (for example, we currently mostly see portrayals of disabled white men). 

 

There is still a long way to go and it can feel as though we have no control over these issues – particularly if we don’t work in the media. But if we want to make progress and ensure that future generations of disabled people are treated with respect and equity in society, we can lead by example with our own interactions, challenging negative stereotypes, treatment and behaviours in a positive and supportive manner.

 

Ultimately, eliminating ableism in language and actions is going to be a long process. We have moved on from some of the mistakes of the past when people with disabilities were locked away and forgotten about, or treated as peculiarities to be mocked, pitied and feared. We are now in a place where ableism is gaining awareness and people are starting to think about the language they use every day, which implies that disability is a negative thing. Examples include describing people as ‘crazy’, ‘idiots’ or ‘mental’. More recently, we are also seeing the word ‘crip’ being reclaimed by the disabled community in an effort to remove the negative connotations of the term[xviii], as we have seen in other minority communities as they have reclaimed language previously deemed negative into their culture. 

 

If you view disabilities as a negative, something that should be overcome, fought against, or powered through, then you might react more negatively towards people than if you accept their limitations and restrictions. This is much easier said than done due to the prevailing ableist views within our society, as well as our own personal histories, lives and experiences. 

 


References


[i] https://en.wikipedia.org/wiki/Ugly_law

[ii] https://connect.springerpub.com/content/book/978-0-8261-6162-8/part/part01/chapter/ch01

[iii]https://historicengland.org.uk/research/inclusive-heritage/disability-history/1832-1914/

[iv] https://scholarworks.uark.edu/cgi/viewcontent.cgi?article=1040&context=alr

[v] https://www.disabilitywisdom.com/2018/12/21/whats-my-age-again-why-mental-age-theory-hurts-people-with-intellectual-and-developmental-disabilities/

[vi] https://www.theguardian.com/commentisfree/2016/jul/20/channel-4-paralympics-advert-disabled-people-not-all-superhuman

[vii] https://en.wikipedia.org/wiki/Ugly_law

[viii] https://www.platformmagazine.co.uk/culture-and-entertainment/opening-old-wounds-disabled-bond-villains-stuck-in-the-past/

[ix] https://en.wikipedia.org/wiki/Transactional_analysis

[x] https://www.disabilitymuseum.org/dhm/edu/essay.html?id=24

[xi] https://link.springer.com/content/pdf/10.1007/s10882-006-9027-3.pdf

[xii] https://righttolife.org.uk/news/woman-with-downs-syndrome-criticises-amazon-over-offensive-clothing/

[xiii] https://www.facebook.com/dontscreenusout/videos/1243157542711847/

[xiv] https://www.bbc.co.uk/news/amp/election-2017-39980793

[xv] https://www.theguardian.com/film/2016/jun/02/me-before-you-disabled-backlash-not-pitied

[xvi] https://afi.ie/the-models-of-disability/

[xvii] https://www.varsity.co.uk/film-and-tv/19551

[xviii] https://www.theguardian.com/commentisfree/2016/nov/22/language-of-disability-stereotypes-disabled-people


 

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Victoria Bartle is a writer, speaker and PPI contributor, living positively with multiple long term health conditions. Her background is in retail, hospitality, welfare and work management, and since leaving employment in 2016 due to her health conditions, she has been volunteering with the NIHR as a patient voice. She has lived experience of being disabled, and accessing primary and secondary health care and social care for herself and as a carer for a friend. Victoria loves writing and talking to people, and you can find out more about her on her website: https://www.livingwithinvisibleillness.co.uk