Disability Inclusion: Lessons from Strictly Come Dancing

On 3 December, the world marked the UN’s International Day of People with Disabilities. According to the UN, an estimated 1.3 billion people experience significant disability. This represents 16% of the world’s population, or 1 in 6 of us. I have been reflecting on which factors build disability inclusion and which ones can get in the way. As an employer of disabled people, it’s important to have a robust reasonable adjustments policy and to deliver on that in a timely and efficient way. However, I think we can also get stuck in a reactive response to disability inclusion and forget that fundamentally changing attitudes and expectations is a big part of the story. It’s also important to think about whose stories get told, who is prepared to listen to them and what we learn as a result.

Strictly Come Dancing, a celebrity dancing competition, has been running for 20 years on the BBC in the UK and has had its share of ups and downs recently in terms of the quality of care for contestants. What has struck me and many people in the UK this year, has been the inclusion of its first blind contestant, comedian Chris McCausland (spoiler alert coming if you haven’t watch the series yet!). Strictly has included disabled contestants in several series, including in 2021, when actress Rose Ayling-Ellis was the first deaf contestant to win the competition. Her routine in which she and her dance partner danced in silence as a tribute to the deaf community won a British Academy Television Award for must-see moment in 2022. Through the programme, she brought British Sign Language to a new audience. Following on from her, this year reality TV star Tasha Gouri took part as a cochlear implant wearer and there was little question about her potential as a deaf contestant to dance to an outstanding level. Expectations had been raised, perhaps due to the visibility and success of the previous deaf contestant and Tasha also got to the final through her absolutely standout dancing.

Chris McCausland was registered blind after losing his sight to retinitis pigmentosa in his 20s and 30s. He turned down appearing in the Strictly show more than once but took the plunge into the competition this year, as the series’ first blind contestant. From the start, he challenged expectations of what a blind person can achieve in dance. The judges were vocal about how little they had thought would be possible for him. He rarely received the very top marks each episode, but as his professional dance partner and teacher Diane Buswell pointed out, he couldn’t watch what his competitors were doing, learn the moves from a video or practice in front of a mirror (although he did quip at one point that this was part of his practice routine). Expectations were low and Chris consistently exceeded them. The public vote is a huge factor in the programme and he was saved a couple of times from being in an elimination dance off due to the high level of support for him.

As a story, it’s perhaps not surprising how it ended. Chris sped through to the final, featuring one dance with a ‘black out’ sequence when the whole auditorium was plunged into darkness, echoing Rose Ayling-Ellis’s emotional stand out moment of silence. When it came to who was going to lift the ‘glitterball’ trophy after the public vote, not many were too surprised – Chris and Diane were the worthy winners. Tears and jubilations all round!

However, what were our expectations at the start of the series and would reasonable adjustments have helped to adjust those as well? Chris turned down the chance to dance with a silent audience so he could better hear instructions from Diane – he wanted to be buoyed up by the electric studio atmosphere, just like the other contestants. He’s made the point in interviews since, that it’s not blind people that need inspiring. According to him, the biggest benefit to everybody is to change people’s attitudes to disability. He achieved what he did because he worked extremely hard, had innate musicality and courage and was blessed with a talented teacher. Most of all, he was given the chance to participate in the first place. He made the point that disabled people can of course defy expectations but, importantly, with opportunity and the right support in place. Reasonable adjustments can provide the right support – but the opportunity has to be there. In 2025, I would like to see this at the top of every employer’s agenda to create more of those opportunities. The results may well defy your expectations.

Improving equality data disclosure – how, what and why

This week I joined enei and their Behavioural Insights Team for an overview on diversity monitoring and ways to improve the quality of organisational diversity data.

For many of us working in equality, diversity and inclusion (EDI), understanding the impact of equality action plans is key to honing new approaches to tackling underrepresentation and discrimination in the workplace. Equality data, such as information on the demographics of our staff, is essential for identifying gaps in areas such as recruitment, pay and progression and assessing the impact of the actions we take to address these. In many organisations, disclosure rates for protected characteristics such as race or ethnicity, sexuality or religion can be extremely low.

The enei Behavioural Insights Team explained the importance of data and diversity monitoring before going on to consider the steps that can be taken to help improve participation levels by staff. In their experience, when employees have not acted on invitations to provide their diversity data, in the vast majority of cases this is due to practicalities. For example, the process to provide details may be unclear or difficult to find, or the questions and categories may be confusing. Many internal campaigns to improve disclosure of personal data focus on changing attitudes towards data collection, rather than addressing the key pain points in providing the data. It is also important of course to give clear reasoning on why data is being gathered to address attitudes, but this can be a relatively small reason for data not being provided. The greater the atmosphere of trust within an organisation the better but it is important to also remember that employees have every right not to share their data if they choose.

ENEI’s recommendations for collecting data are:

• Communicate. Speak to staff to understand their concerns about data disclosure and how this blocks their behaviour
• Keep it simple. Prioritise and address concerns as succinctly as possible while remaining transparent, for example by emphasising that few people have access to the data. Communications should be as short and clearly written as possible, sent out by a person not a general account. You can provide additional information as links
• Make it direct. Make the ‘call to action’ very prominent, link the disclosure to a particular campaign if there is one and always give a deadline (even if this is not a real deadline)
• Remove frictions. Make the disclosure process as easy as possible, for example include the link in an email and try the process out yourself to test it.
• Send reminders. Most people will click on the link straight away, or not at all. Send some reminders at different times but allow people to unsubscribe so they are not overwhelmed or irritated
• Use standardised questions (or test them first). The Office of National Statistics questions and responses have been heavily user tested, so it is good practice to use these, especially for a more nuanced dataset on disability. For outside the UK, you should comply with local legislation and use question sets that reflect the local community.

Reminding staff to provide data is just one side of the equation. You should also give careful thought to processes for monitoring and analysing that data.

The enei’s recommendations on getting data monitoring right are:

• Consider frequency. Establish the appropriate frequency for meaningful insight on progress for your organisation. For example, you might want to carry out an annual deep dive analysis of all data, but take a light touch approach for more monitoring regular processes, such as recruitment
• Expertise. Ensure that the people analysing the data have the right quantitative analysis skills and understand the EDI challenges well enough to interpret the findings in a meaningful way. Analysis should take account of trends, significance and benchmarking.
• Accountability. Accountability and responsibility for moving the needle on equality data should run right through from senior leaders with overall responsibility, to managers implementing actions at local levels.
• Action planning. Use insights from the data to inform and revise your EDI action plan on a regular basis
• Feedback. If you run staff surveys or gather EDI data, make sure you feed back to your employees in a timely way on what you have discovered (in an anonymised way), including how you will respond to these findings and when.
• Evaluate. Use data to understand the impact and progress of your EDI initiatives. Make sure you give time for actions to take effect and cross check your data from more than one source, for example by gathering qualitative data such as from focus groups, as well as quantitative data.

Following these common sense approaches can give a significant boost to the quality and quantity of your organisational data as well contributing to the effectiveness and impact of your EDI initiatives.

Disability Inclusion in the Workplace

On 29 October, I joined IGPP for the Disability Inclusion in the Workplace event. According to Dr Ruth Owen OBE, CEO of Leonard Cheshire, disabled people are the fastest growing minority in the UK. Up to one fifth of adults will experience disability at some point in their life, leading to additional stress on their working lives.

Brian Lutchmiah, Higher Education Partnerships and Inclusion Lead, Diversity and Ability added that one quarter of adults will experience mental health issues in their life time. The costs of living with a disability or mental health condition can be significant, as can the time needed for attending appointments or managing chronic conditions. One NHS Trust provides staff with up to 10 additional days leave per year to manage these challenges. Complex work arrangements might be needed to support appointments, hospital stays, or Assisted Living and all of these can affect the continuum of work or education. Many students in particular are not aware of the financial support available, such as Access to work and the Disabled Students Allowance.

“It’s a challenge on top of a challenge to navigate the labyrinth,” explained Brian.

According to Brian, the benefits of a employers taking a proactive approach to inclusion include greater acceptance of diversity, normalisation of difference, increased confidence (for both employers and employees) and better wellbeing. Employers may also see increased productivity, lower absenteeism and higher retention levels.

“For me, it is about promoting a sense of authentic belonging,” summarised Brian.

Lucy Reynolds, Founder and Director of We Are All Disabled described how the pandemic lockdowns were a great leveller. “Suddenly everyone was working from home and not able to do the things they are used to,” she reminded us.

In the Lancashire police service, Rozila Kana described their experiences with adjusting sick leave policies. “One size fits all is not fit for purpose,” she advised. “You need to take time to put adjustments in place and make sure your communications strategy is right. There should be no ‘banter’ on this issue and flexible working is increasingly accepted.”

For Rozila, there is now a better awareness of conditions that might lead to disability and the wider impact this has on families. “It is the job of managers to do the learning on this,” she urged. “You need buy in from the top table to give equality and diversity initiatives credibility. This is not an add on, it is a business imperative.”

Esi Hardy is the Managing Director of Celebrating Disability and supports organisations to identify their pain points about disability inclusion and work towards addressing them.

“Medically, parents are told from day one that a child with a disability is something to be sorry about,” she said. “When we communicate about disability in the workplace, we need to think about what people will think, feel or do as a result. We need to be aware of the influence of tone of voice when we speak about disability.”

Typical pain points for employers are disabled people not disclosing their requirements or reasonable adjustments and attracting more disabled people to work for their organisation. Organisations want to know why managers do not use the processes they have in place to support disabled colleagues or job applicants. Often, employers know that they need to change, but are unsure how to do this.

To improve line managers’ knowledge about disability, employers often offer training. To make this effective, they should:

• Explain the relevance for the training i.e. to create an inclusive culture
• Create psychological safety
• Develop and enable confidence in speaking about disability
• Provide opportunities to practice conversations about disability

Eli’s recommendations for making improvements in the workplace to disability inclusion are:

• Make no assumptions to make sure you are open to understanding what others think and feel
• Give feedback on any surveys you carry out
• Co produce strategies e.g. you said x, we did y
• Ask others about how to improve and explain why you are asking e.g. we want to develop an inclusive culture because…

There could be two main reasons why staff do not disclose a disability to their employer. Firstly, they may not identify as disabled (although they may have an impairment). Secondly, they may be afraid of repercussions. Employers should articulate why they want to know this information and what will happen as a result, for example to improve accessibility and the inclusive culture of the organisation.

When recruiting, make sure that you articulate and demonstrate the inclusive values that you hold as an organisation, through the application process and during interviews. You can demonstrate your organisational values by role modelling inclusive behaviour towards all candidates, for example offering breaks during interviews and asking if people are comfortable. This helps to develop an environment of trust that should improve opportunities for dialogue and collaboration with new and existing disabled staff.

As described by many of the speakers, in order to provide the cohesive and inclusive societies of the future, leaders need to influence and collectively empower society today.

Autism and wellbeing

At the Autism Show in June 2021, we heard from speakers around the world about all matters relating to autism, from education to employment and from wellbeing to managing meltdowns. As high proportions of people with autism can be vulnerable to anxiety and depression, maintaining your wellbeing can be a challenge.

Peter Vermuelen, autism consultant and lecturer asked whether happiness is a mission for autistic people – or is it mission impossible? “You need to redefine this as becoming autistically happy,” advised Peter. “Avoid forcing a person with autism into neurotypical concepts of happiness.”

Obviously, autistic people are in fact human and have the same Maslow’s hierarchy of needs as anyone (although you should probably also add wifi and a full battery to the physiological needs). Autistic people have a higher risk for mental health issues – anxiety, depression and trauma are almost co-morbid conditions. The lifetime prevalence for people with autism is 10-65% for anxiety (compared to 15-20% of neurotypical people) and 10-55% for depression (10-30% neurotypical). Autistic people also have a lower quality of life in general, with respect to living arrangements, work/education, social relationships and future perspectives, even when compared to other neurodiverse diagnosed people, such as those with ADHD. This quality of life deficit cuts across all IQ ranges – the ‘severity’ of autism makes no difference to mental health issues.

According to Deci and Ryan’s self-determination theory, we all want to be our own person, to have autonomy, competence and relatedness. For Peter, studies show that the happiest people are the most successful (not the other way round). Even in neurotypical people, negative feelings can cause an overfocus on detail and rigidity in thinking. Positive feelings increase cognitive functioning, flexibility and adaptability.

There are two aspects of happiness:

• A pleasant life e.g. joy, pleasure, absence of pain, safety, activities you like (volatile elements)
• A meaningful life e.g. purpose in life, personal growth, serving others, life satisfaction (more stable elements)

Peter believes that happiness is within reach of all autistic people but interventions should be autism friendly, individualised and involve the person themselves. Peter’s programme, the H.A.P.P.Y project involves increasing baseline happiness and also adding more of the hedonic, or transitory, pleasure. This includes:

• Accepting and loving yourself
• Good feeling toolbox, such as a box full of happy things to take to school or work
• Flow activities, those where we lose track of time and are distracted from our unhappiness. Special interests are a great fit here!
• Physical exercise, as exercise helps with emotional regulation
• Problem focused coping strategies. If we make life too easy, this creates learned helplessness. We need to build resilience in small steps to face problems
• Emotion focused coping strategies e.g. mindfulness, relaxation, visualisation in an autism friendly way
• Positive thinking. If you explore the ‘what ifs’ ahead of time, this can take away the unpredictability of what you are worried about
• Gratitude. Make other people happy by writing letters or paying compliments
• Kindness. Using your autistic strengths to help other people aids connectedness
• Personal projects. Goals give life meaning, so try learning something new (although don’t make happiness your goal)

Peter concluded with my favourite quote of the day: “You can’t stop the waves but you can learn to surf” (Jon Kabat-Zinn).

Sensory processing and autism

Your ability to interact with the world through your senses can have a huge impact on your physical and mental wellbeing. Lorraine Young, an autistic adult and Sensooli Community Manager, highlighted Sensory Processing Disorder (SPD), which is common in the autism community. SPD can lead someone to be under or over sensitive to stimulus such as sounds, smells and textures, causing either sensory seeking or sensory avoidant behaviours.

I always thought we had 5 senses, but apparently there are 8: sight, sound, smell, touch, hearing and also vestibular (balance), proprioception (knowing where are bodies are) and interoception (not knowing if we are hungry, thirsty or need the loo).

Overall, around 1 in 20 people have sensory issues, while 1 in 6 may be significantly affected. Not all people with autism have SPD however, and vice versa. Helpful sensory hacks can use sensory seeking to counteract avoidance, for example using a favourite smell, such as hand cream to counteract a disliked smell. The Tudors clearly had a point with their handy pomanders.

Lorraine recommended using Sensooli to work out your own sensory profile. Sensooli provides sensory products and also support networks. “Sensooli is not a diagnostic tool, it is a discovery tool,” advised Lorraine.

Autism and disability in society

Thomas Henley, an autistic YouTuber and creater of the Thoughty Auti podcast, described how he can both love and hate being autistic. As only 22% of adults with autism are in work and 40% live with depression, social isolation can be a real problem.

Autistic people may experience challenges in society due to the ‘medical model of disability’, which assumes that people are disabled by their individual impairments or differences themselves. This model implies that the autistic brain should be treated to make it more neurotypical in order to achieve a better quality of life. Neurotypical life is the ideal in this model.

In contrast, the ‘social model of disability’ states that people are disabled by the interaction of their differences with external factors or society. In this model, social structures, attitudes and provisions should be adapted to fit the individual better. With improved support and integration, a high quality of life becomes possible without needing treatment. For Thomas, autism is a ‘differability’. “It has its upsides and downsides, just like being neurotypical,” he explained. “There is no ‘right’ way of being! Rather than treat autism, we should instead treat the conditions that co-occur with autism, such as mental health conditions.”

In mental health support there are very few specialists in autism and they tend to be available only privately at a high cost. There are not many targeted services available through the NHS and research into autism and mental health is also not well funded. “Nor is there much research into the upsides of autism!” pointed out Thomas. He remarked that there is an increasing media presence for autism and autistic characters, but many stereotypes still persist.

“Ironically, autistic actors are not playing autistic characters on TV because they often don’t fit the stereotypes!” said Thomas. Seeing truer representations of autism on screen would help to raise awareness and understanding, creating a society that is better able to adapt to the ‘differabilities’ of people with autism and (hopefully) improve their wellbeing.