Let’s Be Loud and Proud about Disability

An interview with Kate Nash

“I wanted to use both my story and the collective might of people with disabilities to improve legislation, but also to encourage others to be more loud and proud about their experiences.”

In many countries, the evolution of social structures and attitudes has lent more visibility and variety to the experience of disability. While it may not be true for every individual, there has been a noticeable shift from shame and discrimination to recognition and celebration.

To understand the events and policies that have inspired these changes, I spoke to writer and speaker Kate Nash. As a change leader, Kate’s mission is to transform attitudes towards disability, promoting a more nuanced and positive representation of individual identities and experiences. She was awarded an OBE in 2007 for services to people with disabilities.

In 2015, Kate founded PurpleSpace, a global professional development community for disability employee resource groups. Today, the network consists of over 2000 leaders across 187 organisations, supporting more than a million employees with disabilities.

In this interview, Kate shares her personal experience of disability and the message behind her second book, Positively Purple: Build an Inclusive World Where People with Disabilities Can Flourish (2022).

What inspired you to become an advocate for disability rights?

Well, the expression ‘the personal is political’ resonates with my experience of disability. I acquired juvenile chronic arthritis (or Still’s disease) when I was 15 years old. I went from being a very active teenager, running around the hockey pitch, to someone who was always in pain. Everything changed and I saw a very indistinct future ahead.

When I was thinking about what I wanted to be when I grew up, my mum said, ‘It would be nice if you could get a little job one day’. This memory captures the pity often expressed towards millions of people with disabilities, which can get in the way of us feeling confident and good about ourselves.

So, to answer your question, my personal experience of disability was what fuelled my desire to make a difference. I wanted to use both my story and the collective might of people with disabilities to improve legislation, but also to encourage others to be more loud and proud about their experiences.

I think that’s one of the best ways to inspire action. While we’re on the topic of collective advocacy, I’d like to talk about the #PurpleLightUp movement that you launched in 2017. Can you tell us more about the purpose of this campaign and its impact so far?

We used to refer to #PurpleLightUp as a campaign, but we now call it a movement. It all started with something I tweeted in July 2017. I’d been watching the remarkable Pride movement and admiring how skillfully LGBT+ communities use the colours of the rainbow to represent both their struggle and their celebration of human difference. At the time, the colour purple was becoming increasingly synonymous with the experience of disability. My stray tweet was actually question: ‘Is it now time for business community networks — and particularly disability employee resource group (ERG) leaders — to get together on International Day of Persons with Disabilities and celebrate the economic contribution of people with disabilities?’

Disability is often seen as a negative experience; it’s associated with lack, poverty and an inability to access resources. Although some of those things are true, disability is also a story of joy and fun. I wanted to create a more balanced narrative about the experience(s) of disability, so I launched #PurpleLightUp.

This cacophony of celebration happens every year on 3 December to acknowledge the economic contribution of employees with disabilities and the actions that employers have committed to taking. Around this time, many companies set up an employee resource group, launch an accessible product or showcase their policies. So, #PurpleLightUp is no longer a campaign; it’s a movement with a life of its own.

That’s amazing to hear. The comparison with Pride is apt, because the disability movement also seeks to emphasise joyful and empowering moments rather than just suffering. It’s about embracing our unique identities and being openly proud of who we are.

You’ve hit the nail on the head. We are all uniquely different, but the experience of disability is often overshadowed by negativity. What we’ve learnt from Pride and other movements has helped us begin to frame a narrative — or, rather, a journey — that is as positive as it is challenging.

Positively Purple tells your own story alongside a history of the disability movement. How has the treatment of employees with disabilities changed over the past decade? Which key events and campaigns played a part in these developments?

We’ve seen important legislation in the UK, like the Equality Act 2010 that evolved from the Disability Discrimination Act 1995. The Americans with Disabilities Act has been around since 1990. As I look back on this decade, the key change I see in employment is the consolidation of the concept of workplace adjustment. Thanks to legislation, it is now an employer’s duty to make an adjustment for anyone who acquires a disability — either while at work or before they join the organisation.

Of course, there’s still more work to do, but the distinct difference in this decade is that many employers are taking seriously the need to develop and deliver an end-to-end workplace adjustment process. It has gained visibility and there are now individuals with an executive responsibility for making those adjustments. On the whole, employers are also more inclined to accept disability as part of human difference. This has been hardwired into their policies and practices, whether it’s recruitment, IT or access to flexible working.

I’d like to think that PurpleSpace has played a big part in these positive changes. When we entered the market in 2015, there was no global home for disability ERG leaders, but now they have a network for sharing ideas and accessing services.

The other key event was the arrival of The Valuable 500, founded by Caroline Casey in 2019. This group of 500 companies have committed to putting disability on the board agenda and taking meaningful action. It’s a fantastic global movement to support. Whether or not companies are joining organisations like PurpleSpace or The Valuable 500, I’ve definitely noticed meaningful improvements in the delivery of workplace adjustments.

What are the main stigmas surrounding disability that still need to be challenged?

That’s a great question. I think the main stigma is not understanding how many disabled people there are in the world. In any organisation, around 12% percent of employees will have a disability. Also, 83% percent of disabled people worldwide acquire their disability during their working life. This experience can be really disruptive; in the first few years, it requires a lot of effort and emotion to learn how to do things differently.

Trying to explain how you feel about the fact that life hasn’t quite worked out as you’d imagined can be exhausting. At the same time, you need to earn a living and probably want to be successful. The majority of us want to do well, for ourselves and for our families.

So, the biggest stigma that still exists is the idea that disabled people are something different, something ‘other’. They’re not. We are them and they are us. The majority of people will experience disability at some stage in their life, so we should see it as something common and human. We need to get over ourselves and find ways to accommodate people with disabilities.

What advice would you give to someone who wants to champion inclusivity in their workplace? How can they become an ally for people with visible and/or invisible disabilities?

Being an ally or champion is about what you, as an individual, can do at work to support the process of including disabled people. It’s about being interested, inquisitive and engaged. You need to develop an appetite for education. You can read more or watch TEDx Talks by leading disability rights advocates. You can watch Crip Camp (2020) on Netflix — a wonderful documentary about the rise of the disability movement in the United States — or the BBC docudrama Then Barbara Met Alan (2022).

On a practical level, you can learn about the workplace adjustment process and commit to taking action this year. Try to be open and conspicuous about your support: mention it in team meetings, invite people to share their stories and draw attention to external events like disability days throughout the year. There might be someone in your team with dyslexia, cancer or multiple sclerosis. Why not ask whether they would be comfortable sharing their story and what the business has done to support them?

I would also encourage people to openly foster disabled talent. If you want to better understand the lived experience of disability, why not ask somebody to reverse mentor you? That way, you’ll learn more about your colleague and how you can be a more supportive line manager.

Finally, join a disability ERG. Immersing yourself in the world of people with disabilities and gaining an insight into their daily challenges is a great way to educate yourself. You’ll learn how to do things differently — and better.

It’s important not to be afraid of having these conversations. Most of us worry about saying the wrong thing, but we need to be more open and willing to be wrong. Starting a conversation could empower someone with a disability to narrate their own story.

That’s beautiful advice. You’re right, the majority of people don’t want to offend others. If you’re brave enough to have a conversation with somebody who is struggling, they will understand that you want the best for them. This is sensitive stuff, but don’t be afraid to make a mistake or use language that others may not prefer. You’ll learn to adapt before jumping back into the conversation.

When we talk about diversity, equity and inclusion (DEI), it’s important to be conscious of the language we use. There’s actually a section in your book called ‘Mind your language’. I’ve noticed that you refer to ‘people/employees with disabilities’ rather than ‘disabled people/employees’. Is there a reason for this?

As a business, we mirror what the majority of employers use: ‘employees with disability’. Employers tend to take their lead from the United Nations, which recommends using people-first language. However, the UK is one of many jurisdictions where a lot of people prefer the political language of ‘disabled people’ to the term ‘people with disabilities’.

This is a controversial topic, but I believe that it should be up to the individual to decide how they want to be described. I decided to alternate between the two terms in Positively Purple in order to acknowledge other people’s preferences.

How can people with disabilities advocate for themselves and gain confidence at work?

Sharing your story is one of the most powerful mechanisms for driving change. If you want to advocate for yourself, start by telling your account of disability and difference in a way that stays true to your personal brand. You can take small steps like talking to your colleagues, writing something for your company’s newsletter or hosting a webinar.

I highly recommend reaching out to other people with disabilities. Before I set up PurpleSpace, a lot of employers told me that ‘people with disabilities don’t like to hang out. Somebody who is deaf or hard of hearing has nothing in common with someone who has arthritis, a visual impairment or cancer’. The workplace adjustments that support those individuals may be different, but there is a similar beat running through their lives. They have probably all been through a life-changing experience and had to learn how to do things differently, while navigating the soft bigotry of low expectations and pity. So, finding ways to connect with other individuals with disabilities can be very empowering.

How important is social media for spreading awareness and giving people with disabilities a platform for sharing their stories?

I think it’s hugely important. As we all know, social media can be a force for good, as well as a force for less good. It plays a valuable role in embedding the knowledge that many people with disabilities exist in this world. The challenge is what I call ‘mis/disinformation’, meaning that you need to use social media carefully to avoid fixating on the negative aspects of our lives. If you go on Twitter or LinkedIn and search for ‘disability’, be prepared to be gloomy within seconds. But, if used properly, social media can be incredibly powerful. I love nothing more than seeing young people with disabilities talk about the good things that happen in their lives.

As someone without a physical disability, I find it really inspiring to hear about the incredible things people have achieved in spite of — or perhaps because of — their disabilities. I think everyone should embrace uncertainty and adversity.

When non-disabled people feel inspired and motivated to do things as a result of hearing our stories, that’s a great opportunity to join the conversation and share what you’ve learnt. That way, it becomes a virtuous circle of change rather than a vicious circle of negativity.

What are your 3 key takeaways from Positively Purple?

First, it’s important to own and share our stories of disability. It’s not easy, but we need to practise communicating our experiences in a way that doesn’t detract from our power as high-performing individuals.

The second message is that the experience of disability is not completely negative. My book is full of stories, moments and events throughout history that depict disability as life-affirming and enriching, despite being a challenge. I’ve learnt so much about myself and how other humans thrive in the face of disability. There’s a richness here that we need to showcase.

Finally, disability employment resource groups and networks are entities that continue to change the world by building disability confidence from the inside out. Perhaps I’m biased because PurpleSpace is designed to help organisations set up high-performing disability ERGs, but I would encourage you to create an ERG if your organisation doesn’t have one. If you have one already but aren’t really investing in it, then think about how you can help it flourish.