The Future of Disability Awareness: Changing Narratives and Perceptions

A significant number of people live with a disability, and awareness of disability-inclusive environments is increasing. However, not all disabilities are the same, and whilst attitudes towards people with a disability have improved greatly in recent years, some are seemingly stuck in the past. Disability awareness needs to recognise this in order to provide greater inclusivity in everyday situations such as:

• Education
• Healthcare
• Employment
• The provision of goods and services
• Transport

Disability awareness is developing from just educating people about disabilities and the best practices to overcome them, to embracing and celebrating differences, actually hearing people with a disability in order to provide equal and increased opportunities for them in all spheres of life.  

However, there are still many stereotypes and preconceptions of how disability is viewed that need to be challenged and overcome, such as recognising that not all disabilities are visible, making everyday life demanding for so many people. In the UK, 1 in 5 people have a disability, 80% of which have a hidden disability.

Research is mostly focused on disability overall or specific conditions, rather than what could be described as invisible disabilities. As a result, there appears to be limited evidence for the most effective strategies to increase awareness, inclusion and support for people with invisible disabilities. Lack of understanding and stigma from others creates consistent barriers in the lives of people with invisible disabilities. They often have dilemmas over whether to disclose their disability, due to concerns about disbelief, stigma or confidentiality.

Many people with a disability report challenges in access and inclusion in employment, higher education and further education, and difficulties accessing other public services and infrastructure, such as transport and health and social care, all of which impact the ability of people with a disability to participate inclusively in work, education and everyday activities that others take for granted.

Substantial progress has been made in recent decades when it comes to inclusion, and the Equality Act 2010 was introduced to ensure that no one can be discriminated against for being disabled. However, statistics from the Office for National Statistics (ONS) show that people with a disability make up around 24% of the working age population. Yet the employment rate is 53.7% compared to 82.7% for people who are not disabled. The unemployment rate, meanwhile, is nearly double: 6.2% versus 3.4%.

The life experiences of people with a disability have been highlighted by Disability UK and show that:

• People with a disability are more likely to be living in poverty than non-disabled people.
• People with a disability over the age of 65 were twice as likely than non-disabled people to be living in food poverty.
• There is a shortage of adequate housing for people with a disability with less than 17% of councils having clear strategies to build disabled-friendly homes.
• Only 8% of employers report recruiting a person with a disability in the past 12 months.
• People with a disability in Britain are likely to be paid less per hour than their non-disabled peers.
• People with a disability are more likely to face barriers using public transport affecting their independence.
• People with a disability are less likely to be in political office and public appointments.
• Criminal justice agencies do not always understand what forms a disability hate crime.
• Men with mental ill health are likely to die 20 years earlier and women 13 years earlier than their non-disabled peers.

These are just a small sample of the issues that people with a disability face and why it is so important to reshape some of the narratives and perceptions surrounding disabilities to enable a more inclusive environment in all strands of life.

In this article we examine some of the emerging trends and strategies in disability awareness that are shaping the future and will hopefully make an impact on disparities that are still existing.

Key Points

Embracing Diversity and Intersectionality:

As a protected characteristic, disability does not exist in isolation; in fact, all characteristics protected under the Equality Act 2010 can be intersectional. Intersecting identities is the concept that an individual’s identity consists of multiple, intersecting factors, including but not limited to race / ethnicity / nationality, religious beliefs, sex, age, marital status, gender reassignment / identity / expression, and even including those characteristics not currently protected by law, such as socio-economic status, profession, educational attainment, political allegiance etc. 

The Oxford English Dictionary (OED) defines intersectionality as “The interconnected nature of social categorisations such as race, class, and gender, regarded as creating overlapping and interdependent systems of discrimination or disadvantage; a theoretical approach based on such a premise.”

People who belong to two or more characteristic groups may experience discrimination differently from each other and also differently from those who belong to only one characteristic group, and can experience additional discrimination that other people don’t always understand. Intersectionality is a way to help us think about how different people with a disability experience disability discrimination differently depending on the additional identity groups that they belong to. For example, a white man with a disability may be unlikely to face the same level of discrimination as a Muslim woman with a disability, or an older woman with a disability may not face the same level of discrimination as a young transgender woman with a disability. However, it is important not to assume that the lived experience of every person with a disability is the same, even within intersectionality there will be differences in people’s lived experience, as each person is unique.

Disability cannot be pigeonholed into a neat description. There are a wide range of physical, mental, cognitive, sensory and learning disabilities, and people of, for example, different faiths and none, different races, nationalities and cultures, people of all ages, different sexes and gender identities and people from all walks and stages of life that make up our society.

Intersectionality may appear theoretical, but it needs to be utilised. Updating Equality, Diversity and Inclusion training is a good place to start, and adding issues specifically centred on disability and its interconnectivity to other protected characteristics will help create a mindful, supportive and respectful environment.

There are a few initiatives that promote intersectional disability awareness, and these include:

Disability Pride Month – this is celebrated in July each year. It has been described as a day to “accept and honour each person’s uniqueness” and “promote visibility and mainstream awareness” of positive pride felt by people with disabilities. It is an opportunity to celebrate people with a disability, their identities, their culture, and their vital contributions to society. The month is represented by The Disability Pride Month Flag, and the colours of the flag represent:

• Green – represents sensory disabilities including blindness, deafness and other sensory conditions.
• Blue – represents mental illness, anxiety, depression and other psychiatric disabilities.
• White – represents invisible disabilities and those who haven’t yet been diagnosed.
• Yellow/Gold – represents neurodiversity.
• Red – represents physical disabilities.
• Charcoal – represents the mourning of people with a disability victimised by ableism or lost to disability-fuelled violence. It acts as a reminder to protest against the mistreatment of people with a disability.
• Diagonal band – represents cutting through the darkness (barriers) that people with a disability often face.

As an intersectional feminist organisation, Refuge UK have a Respect, Inclusion and Belonging (RIB) Strategy 2022–26 which aims to build a culture where staff, volunteers, trustees, service users, survivors, partners, and all who work with or alongside Refuge UK are valued and respected.

The Employers Network for Equality & Inclusion (ENEI) provides resources including a guide to Intersectionality to its members.

The Disabled Solicitors Network invite others to join them this Disability History Month in celebrating and raising awareness of disability rights, equality and inclusion in the legal profession and wider society.

The Sunflower Scheme aims to raise awareness among others that the wearer has a disability or condition that may not be immediately visible. The Hidden Disabilities Sunflower is a simple tool for a person to voluntarily share that they have a disability or condition that may not be immediately apparent, and that they may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces.

Promoting Positive Representation:

The depiction of disability in the media plays a major role in shaping public perception, not only featuring people with disabilities in entertainment programmes, dramas or sports coverage, but also featuring disability issues in magazine programmes and the mainstream news. There is nothing more powerful than the capacity of media to shape and change societal perceptions of people with disabilities.

Marian Wright Edelman, an American activist for children’s rights and an advocate for the disadvantaged, is cited as saying, “You can’t be what you can’t see”. This maxim advocates better visibility in all walks of life, particularly in the media of all disadvantaged groups.

Recently, influencer Holly April appeared on Good Morning Britain to spread awareness about disabilities, in particular about her discriminatory treatment at a Taylor Swift concert at Wembley. Holly who goes by the name Stoma Babe on social media, was diagnosed with ulcerative colitis in 2020 and now uses a stoma, which is concealed by her clothes, meaning many people are not aware of her disability. Holly described being treated with “contempt by other fans” because of factors surrounding her hidden disability. 

She explained: “I live with a stoma bag and this continuously fills so accessibility to toilets is very crucial when you’re in a place like that. There were a lot of people there so it was very difficult to get out of the crowd to even get to the toilet but then once I did get there, there was only one near where I was standing. There are 2,618 toilets at Wembley stadium, only 147 of those are for disabled users. The queue for that disabled toilet in particular was very, very long. So, when people were in the disabled toilets, there were lots of people knocking saying things like ‘Hurry up, come on’. So obviously anxiety was through the roof.” 

She said that she was now urging venues to step up and invest more in making venues more user friendly for people like herself with disabilities that are not visible. Her bravery in speaking up on national TV about some of the issues that people with a disability, and particularly those with hidden disabilities, experience has helped to bring awareness to the general public. Holly’s experience was probably not an isolated incident, as according to research carried out by the NHS, there are 176,824 people in the UK living with a stoma.

Rose Ayling-Ellis’s appearance and win on Strictly Come Dancing had a massive impact on raising awareness of the deaf community and disability. National disability charity Sense, conducted research following her appearance and found that:

• A quarter (25%) of the public say they are more interested in the experience of deaf people since Rose Ayling-Ellis started to appear on Strictly Come Dancing.
• One in five (21%) of the public say they are now interested in learning British Sign Language.
• Around a third (31%) of the public feel there isn’t enough representation of people with a disability on TV.

Richard Kramer, Sense Chief Executive, said: “Disability representation on television is hugely important, especially on a huge show like Strictly, where there are millions watching. Rose has captured the public imagination. She is breaking down barriers and showing that deaf people can do anything. People are having conversations about disability and inclusion, and there has been a surge of interest in learning to sign.”

It is estimated that over 150,000 people in the UK use British Sign Language (BSL).

Positive depictions of characters with a disability in film and TV in the UK include, but are not limited to:

Liz Carr plays Clarrisa Mullery in Silent Witness.

Cherylee Houston plays Izzy Anstey in Coronation Street.

Rob Mallard plays Daniel Osbourne in Coronation Street.

Daniel Laurie plays Reggie in Call the Midwife.

Sophie Morgan is a BAFTA nominated TV presenter, producer, writer, disability rights advocate and artist.

Steve Brown is a Paralympian, disability advocate, TV presenter and broadcaster, public speaker, mentor and coach.

Rosie Jones is an established writer and actor.

Ade Adepitan MBE is a television presenter and wheelchair basketball player.

Alex Brooker is a television presenter, journalist and comedian.

Warwick Davis is an actor, writer and producer.

The way that people with disabilities are portrayed in the media will directly influence the way people with disabilities are treated in society. The portrayal of people with disabilities has changed in the broadcast media, some for the better and some for the worse. When a person with disabilities is featured in mainstream media, they are most often portrayed in one of two ways: sometimes they are portrayed as inspirational and courageous, achieving albeit simple things against the odds; alternatively, they are depicted as the victim or the helpless soul in dire need of constant support, unable to do anything for themselves without a support worker, friend or parent. Media has come some way towards inclusivity; however, more positive portrayals of people with disabilities living regular lives like ‘everyone else’ are needed to really change perceptions.

Leveraging Technology for Accessibility:

Advances in technology have huge potential in reducing inequality and opening inclusion for people with disabilities. Information and communications technology (ICT) is a term that refers to mainstream technologies such as mobile and smartphones, computers, tablets, apps etc. Utilising technology to empower people with disabilities is not a new concept, as assistive and adaptive technologies have been used for many years to promote independence and participation. However, increasingly as ICT develops new functionalities that better facilitate communication and information access for people with disabilities, opportunities for independence and participation widen, empowering people with a disability to participate fully in society and to excel.

People use technology in different ways, for a variety of reasons, but for technology to be a force for good it must be thoughtfully designed, considered and all-embracing. Inclusive design describes methodologies to create products and services that understand and enable people of all backgrounds, ages and abilities. Inclusive design ensures that products, services, places and experiences are open to all people and may address accessibility, age, culture, economic situation, education, gender, geographic location, language and race. The focus is on fulfilling as many user needs as possible, not just as many users as possible. Inclusive design aims to create one product, service or experience that can be accessed and used to the greatest extent possible by all people.

There are a variety of mobile apps available for helping users with a disability with specific tasks. Both Apple and Android mobile devices contain a variety of accessibility features by default, including text size adjustments, screen readers, high contrast modes, magnifiers, mon-audio and much more. Some examples of these include, but are not limited to:

Google Live Transcribe is a speech-to-text mobile app that helps you engage with spoken words and surrounding sounds in real time.

Otter AI transcribes all your meetings, interviews, lectures and everyday voice conversations in real time, so you can focus on the discussion.

Apple Live Captions spoken dialogue is turned into text and displayed in real time on your iPhone screen. You can more easily follow the audio in any app, such as FaceTime or Podcasts, and in live conversations around you. Live Captions is available on iPhone 11 and later when the primary language is set to English (U.S.) or English (Canada). 

Assistive Touch. You can use Assistive Touch to adjust volume, lock your screen, use multi-finger gestures, restart your device or replace pressing buttons with just a tap. There are two different apps called Assistive Touch, one for Apple and one for Android, that do the same thing although they are not the same company.

Seeing AI is a free app that narrates the world around you. Designed with and for the blind and low vision community, this ongoing research project harnesses the power of AI to open up the visual world by describing nearby people, text and objects.

Microsoft Office 365 suite is also available as a mobile application. Some of the applications offer a reduced selection of accessibility customisation tools while others still offer the same list of accessibility features such as live captioning on MS Teams mobile.

Changing Places Toilet app. There are over 1,800 changing places toilets in the UK, and others worldwide. This app allows you to find your nearest facility by searching a specific location, finding how to get there and how to get in, and what facilities are there.

Passenger Assistance helps you request to book assistance in just a few clicks. You can book the assistance you need for train travel from your phone. Within minutes you can communicate your precise accessibility requirements to station workers using the app. The Passenger Assistance app is compatible with screen readers and was created with the input of persons who require accessibility.

Lazarillo guides you through city and building environments with real-time voice messages. Available on Apple and Android.

999 BSL is the UK’s first ever Emergency Video Relay Service in British Sign Language (BSL). The service is accessible via a web-based platform and as an iOS and Android smartphone app. The app enables BSL users in the UK to make calls to emergency authorities such as the police, ambulance, fire and coastguard services via BSL video relay interpreters.

fuelService is an app that helps drivers with a disability find and get assistance refuelling their car. The app tells you which nearby petrol stations have assistants available to refuel your car. You can also use the app to find out if the petrol station can help before you go there and if they can help in the next 30 minutes. When you arrive, fuelService notifies the station and tells you how many minutes they will be. If you don’t have a smartphone, you can still use the service by calling their interactive voice service or text service.

You will need to check the costs of using the app that you are interested in. Some are free, some are free to download with in-app purchases, including subscriptions, and others are paid to download or paid to download with in-app purchases.

Educating for Empathy and Understanding:

Education and gaining awareness about disabilities, understanding the difference between visible and hidden disabilities, recognising the challenges faced by individuals with disabilities, and learning the language of inclusivity is imperative to supporting and promoting disability awareness and inclusion.

As mentioned earlier, updating Equality, Diversity and Inclusion training is a good place to start. Equality, Diversity and Inclusion training should not just be a one-off event at the start of employment or the school/college year. Regular awareness training/workshops can help to educate people about, for example, the various types of conditions that people with disabilities live with and can highlight the issues faced by those with disabilities in order to foster empathy, understanding and allyship. Empathy involves understanding and sharing the feelings of another, whilst sympathy can sometimes lead to pity, which is not empowering. Listening to people with disabilities life experience stories from their own perspectives is very important, so a great resource might be including guest speakers, or podcasts, in the sessions, such as but not limited to: 

• #PartofMe
• BBC Access All
• The Disability Download
• The Undressing Disability Podcast
• Meet the Mancunian

Insights into the lives of others provide valuable lessons on empathy and how to be a supportive ally.

Many disabilities charities provide training and resources to help educate people and to raise awareness about disabilities and inclusion. These include, but are not limited to:

• Royal National Institute for Deaf People (RNID)
• National Autistic Society
• The Steps Charity (people with lower limb conditions)
• The Mental Health Foundation (MHF)
• Asthma + Lung UK
• Colostomy UK
• Diabetes UK
• Mental Health First Aid (MHFA) England
• The Partially Sighted Society
• The Brain Charity

Organisations such as City & Guilds and the University of Cambridge Centre for Teaching and Learning provide advice and resources for developing inclusive curriculum content.

An important way to promote inclusivity is to conduct an equality impact assessment of all organisational policies, in order to help understand and assess the potential impact of policies to all groups. Organisational policies should be inclusive. An equality impact assessment (EIA) is a tool that helps ensure decisions, practices and policies within organisations are fair and do not discriminate against any protected group. EIAs themselves are not a legal requirement; however, they are an effective tool proven to help organisations increase their awareness and understanding of inclusion and provide the opportunity to reflect on how decisions may play out once implemented.

By identifying the barriers that may exist for some people, an EIA can help re-evaluate whether the policy and procedure is the right one at all, or whether there is a need to come up with something even better. For example, in an absence policy, does it include what to do if someone needs time off for reasons related to their disability? This may count as a reasonable adjustment if the time off is related to the disability rather than sick absence, and the employer may want to decide not to count it towards any trigger points if some or all sick absence is related to the disability. By law (Equality Act 2010), an employer must make adjustments for someone who is disabled if the adjustments are reasonable. 

Best practice shows that a successful equality impact assessment reflects on the impacts on different people, so different people’s perspectives should be taken into consideration, otherwise it can feel challenging or overwhelming for someone who does not have lived experience in the categories listed to undertake it alone.

Using inclusive language is critically important to promote and support inclusion. Using terms such as ‘disabled person’, although not wrong, can have the effect of putting the disability ahead of the person. Consider replacing the term with, for example, ‘person with a disability’, putting the person first. Use language that everyone can identify with. A person may be defined as disabled under the law, but may not regard themselves as having a disability or ever use the term disabled to describe themselves. As an example, people who use British Sign Language, and who identify as part of the deaf community, may prefer to be referred to as ‘Deaf’ with a capital ‘D’. Someone who has autism or dyslexia may prefer the term neurodiverse. Terms such as ‘the disabled’ or ‘the blind’ suggest that people are part of a uniform group, rather than individuals with their own preferences and identity. Conversely, saying things such as “I don’t think of you as disabled”, whilst no harm may be intended, a remark such as this can be an affront to a person’s identity, part of which is their disability. 

The language we use to describe ourselves is a very personal thing. Disability is just one aspect of who a person is but, to many, an important part. The best course of action is to speak to the person about their disability language preferences, this shows respect, and try to avoid medical labels, as they say little about people as individuals and tend to reinforce stereotypes of people with disabilities.

Always avoid outdated or derogatory terms that can perpetuate stigma. Phrases such as ‘suffers from’ or ‘afflicted by’ can suggest discomfort, constant pain and a sense of hopelessness, or the term ‘confined to a wheelchair’ which is negative and derogatory to wheelchair users who are after all people who use an assistive mobility aid. It also includes terms that disempower disabled people, such as ‘vulnerable’, ‘frail’ and ‘dependent’. The words that we use to talk about disability are important. Our choice of words can make a person feel engaged and included, or ignored and excluded. 

Organisations can benefit from using the Social Model of disability as a basis for a different perspective on disability and how to talk about it. The Social Model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for people with disabilities. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. People with disabilities developed the Social Model of disability because the traditional medical model did not explain their personal experience of disability or help to develop more inclusive ways of living. 

The Social Model not only identifies society as the cause of disability but, equally importantly, it provides a way of explaining how society goes about ‘disabling’ people with disabilities. Sometimes referred to as a ‘barriers approach’, the Social Model provides a ‘route map’ that identifies both the barriers that disable people with disabilities and how these barriers can be removed, minimised or countered by other forms of support.

Workplace Disability Champions have an important role in supporting the Social Model, and disability inclusion. They can signpost colleagues to support and information, raise awareness and promote the voice of people with disabilities across the organisation, and identify and share good practice throughout the organisation, helping to build a reputation as an inclusive employer. A Workplace Disability Champion should be a volunteer and could be a disability ally or someone with lived experience. 

Advocating for Policy Change and Accessibility:

A key part of being a disability ally is advocating for accessibility in all aspects of society such as drawing attention to, and advocating for, changes to inaccessible environments and practices in the community, workplace or online. An important aspect of advocating for people with disabilities is understanding ableism and how to eliminate it. Ableism is defined as “a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or mental health disabilities.” 

Advocacy can help change societal attitudes and increase awareness about disability issues, leading to more access to education, employment and community participation. People with disabilities who advocate for themselves or others can effect change that will benefit their community and society as a whole.

Lizz Carr is a British actress, comedian, broadcaster and international disability rights activist, who studied law at the University of Nottingham. Lizz has used a wheelchair since the age of seven due to arthrogryposis multiplex congenita. She is frank about her life as a disabled person and the inherent comedy that brings. Liz has been a disability rights campaigner in the UK and has spoken at many rallies. In May 2008, she joined with ADAPT, a prominent disability rights group in the United States, to raise money and to protest against presidential candidate John McCain’s refusal to support the right of people with disabilities to live in their own homes. 

Sophie Morgan was paralysed at the age of 18, following a car accident. She is a presenter and celebrated portrait artist and designer. Her work has included 2013’s Mannequal, a stylish wheelchair design to be used for a mannequin in display windows. It was showcased in the shop windows of both Adidas and Debenhams. In 2008, she was instrumental in challenging boundaries within the fashion industry when she appeared in BBC Three’s Britain’s Missing Top Model, where eight women with disabilities competed. Sophie emerged as the runner-up, which later led to her being chosen as the face of Stella McCartney’s 2012 Adidas Olympics collection. Her TV work has included critically acclaimed documentaries Licence to Kill and The World’s Worst Place to Be Disabled.

Dr Shani Dhanda is an award-winning disability activist, and a regular on TV’s Loose Women and Rip Off Britain. She founded the Asian Disability Network which works to reduce the heightened stigma that exists within Asian communities around disability.

Other celebrities, such as Lewis Capaldi, Roman Kemp and Rose Ayling-Ellis, play a crucial role in raising awareness for disabilities and mental health.

Some of the organisations that lobby and campaign for the rights of people with disabilities include, but are not limited to:

Disability Rights UK works with Disabled People’s Organisations, public bodies, businesses and government across the UK to influence regional and national change for better rights, accessibility, benefits, quality of life and economic opportunities for people with disabilities.

The Disability Justice Project is run by Inclusion London and uses the law to fight for disability rights.

Sense has been standing up for disability rights for over 60 years. 

Heads Together is a campaign co-ordinated by The Royal Foundation of The Prince and Princess of Wales.

Conclusion

Inclusion means ensuring that people with disabilities have equal opportunities to participate in all aspects of life. This means promoting and supporting disability rights legislation, policies and practices that foster inclusion, raising awareness about disability issues, challenging stereotypes, and including people with disabilities in decision-making processes and activities to achieve this. 

But a key to being able to promote and support disability equality and inclusion is to take the time to learn and to understand disability from the perspective of those who live with disabilities. In this article we have discussed the importance that education and training play in disability awareness. We examined some of the advances in technology that help to enable inclusivity, and we have also highlighted people with disabilities who have made a difference to empowering others to advocate for improvements and change. 

People with disabilities need openness and space to talk about their disabilities and how they impact them, and employers need to be more serious about creating an inclusive culture in the workplace. To mis-quote Meghan Markle, the Duchess of Sussex, [disabled people] “don’t need to find a voice. They have a voice. They need to feel empowered to use it, and people need to be encouraged to listen.”