January 11, 2023

Paul White

Topic
Nonprofit

Paul White: 

Whilst we are all equal, we’re certainly not all the same. 

Announcer:

Welcome to Agency for Change, a podcast from KidGlov that brings you the stories of changemakers who are actively working to improve our communities. In every episode, we’ll meet with people who are making a lasting impact in the places we call home.

Kelley Peterson:

Let’s say you decide to open a business, a retail store that sells all kinds of things like a Target or Walmart. How would you ensure your building was accessible? You might add curb cuts or ramps from the parking lot to the sidewalk. If a building had more than one floor, you could install an elevator. Motorized scooters are a great option for larger stores, and so are handicapped accessible bathrooms.

Braille signage could help those who are visually impaired, and you’ll probably want to add designated parking that’s close to your entrance. Great job. Those are all accessibility options for a person in a wheelchair, someone with vision impairment, or a person using a cane.

Now, what if I asked you to make your store more accessible to someone with autism? How about someone with epilepsy? These are disabilities which are less obvious, and they may require varied accommodations.

So, how could you help them? We’ll find out the answer to that question and more as we sit down with the CEO of a company working to make the invisible, visible, by giving those with hidden disabilities an option to communicate their needs to those around them and helping them remove the barriers that disabled people face in society.

Hi, everyone. This is Kelley Peterson, chief creative officer at KidGlov. Welcome to another episode of the Agency for Change Podcast. Today’s guest is Paul White, CEO of Hidden Disabilities Sunflower, which provides an awareness tool for people whose disabilities may not be visible, allowing others to offer them the time, care, and understanding they need.

Paul, I’m eager to talk with you today and learn more about the great impact you are making on the world.

Paul White:

Hello, Kelley. I’m delighted to be here, to be able to talk to you. Thank you for inviting me.

Kelley Peterson:

You bet. Paul, for those who may not be familiar with Hidden Disabilities Sunflower, talk a bit about what the organization does and how you help people.

Paul White:

So, the Hidden Disabilities Sunflower is a simple tool that people with non-visible disabilities can wear to demonstrate that they have an invisible condition, and it enables others, businesses, the general public, whoever, to be able to recognize that person has a hidden disability and simply to be able to offer that person some simple kindness, understanding, or support that they may need.

Kelley Peterson:

So, you said a simple tool. Tell me about that tool.

Paul White:

So, we created the Sunflower as this tool, as we recognize that people with, whilst organizations could support people with visible disabilities, how could they go about people supporting people with non-visible disabilities? And there really wasn’t any way to be able to do that unless the person simply went up to them and said, “I have this condition.”

So, we recognized there really was a space here, and the idea we had was to create a sunflower on a green background, as a simple tool that people can choose to wear to demonstrate their condition. And we went to businesses and said, “Look, this is our idea. This is the concept that we have.”

And businesses thought it was a great idea. The Sunflower originated in Gatwick Airport in 2016 when Gatwick Airport was the prime environment, if you like, to be able to use the Sunflower. They would see tons of people coming through in wheelchairs or with a white cane or where dads who were wearing hearing aid and they could support that person. But they couldn’t support the person whose disability was invisible.

So alongside the airport and also local charities and other groups, we really explored the idea of creating this symbol. And in the end, we decided on a sunflower, the sunflower being a symbol that represents happiness, positivity, and strength in our eyes. And of course, it’s gender neutral. And we decided on the sunflower as the tool that we would use and that’s how we’ve gone about it.

Kelley Peterson:

I think that exactly all of those terms when I think about a sunflower. Happiness, joy…

Paul White:

Yes.

Kelley Peterson:

All of it.

I’m curious to hear about your journey to becoming the CEO of Hidden Disabilities Sunflower. What drew you to this organization, and what did you do before this role?

Paul White:

So that is quite an interesting story. Previous to the Sunflower, I was working for a printing company, or I owned a printing company, and we provided printing and merchandise. And whilst my father was disabled and also my daughter is autistic, but we never really considered ourselves as a disabled family, if you like.

We overcame our problems as most families do. We overcame them as they were, and disability in general didn’t really touch me as a human being. And it was my company that was providing Gatwick Airport with the merchandise and the conversation with Gatwick Airport was around the Sunflower.

One of my guys came back from Gatwick Airport and said, “Look, I’ve got this idea. This sunflower.” And I thought, that’s a good idea, isn’t it? And I kind of thought myself, it’s a really good idea there.

And I thought about it and sat there and thought that could possibly work. And at the start, it really was about me just selling merchandise to the airport. I thought this is going to be great. We’re going to sell tons of these things. So, we started selling them to Gatwick and it became a success. And it moved then to other airports.

And we were selling tons of these things. And I thought to myself, well, I think I probably might try and make a bit of a go of this as a business. Really, it was around selling a product. And then I started getting messages from people, Kelley, about how the Sunflower changed people’s lives. How by wearing the Sunflower and something that we have provided, had enabled them to go and do things they could haven’t been able to do in years or could never do before. How it enabled people to be more independent, to be braver if you like, whereas… And to go out and do things.

And that really had a fundamental effect on me as a person. That I thought, this really has got more. This is about more than just simply selling stuff. This has got the ability to actually do something of good, or for people or for society. And that really affected me, as I say, as a person.

And from that moment, I really had a 180 shift on what I was doing, thought about how I was providing the Sunflower. I then created the business in a much more holistic and empathetic way that we would go out and support people with hidden disabilities, not just sell the product. I built a team around me of people who had experience in providing support to people with disabilities.

And for me, personally, it’s been an incredible journey that I’ve been on as a person. I was in a space in printing where it was a very, very tough environment. It didn’t really… The environment molded you into that kind of person where you were very, very tough and very hard-nosed. And I was getting to the point where I found I wasn’t really happy with the person I was becoming.

The opportunity with the Sunflower came, and I’ve taken it and I’ve grasped it. The ability now to do something of good, as I say to society, is intoxicating for me. Yeah, that’s kind of my story really. I don’t think it’s… It’s a regular story where people fall into this space or people come into this space. I literally just fell into it and I’m on this huge learning curve, where I’m learning about disability and everything that that’s part of that and the barriers.

But I’m getting there. And then the organizer, I’ve got some great people in my team who support me. And that helps.

Kelley Peterson:

What an amazing beginning story. I just love that. And I don’t think any story is a common story, though I do find commonalities even between your and my story, because printing is a big part of marketing communications as you know, and I’m a marketer at heart.

But I worked for an advertising agency that helped for-profits and I thought, dang, I am getting really, really good at helping for-profits be more profitable. But there has to be a way that I use my strengths for good. And that is when I, as a marketer, went to helping nonprofit organizations and it’s been years and years ago that I made that switch and it is a self-discovery about, “Wow, I could use my strengths in a different way to help others.”

And I loved the term that you used, intoxicating, so I’m going to have to borrow that, because intoxicating for good, I love that concept. So, Paul, I understand that this movement originated in the UK. How did the effort get started? You spoke a little bit about it, but is there something you want to add there?

Paul White:

Well, as I said before, the Sunflower first started at Gatwick, whereas I say, they recognized they see their passages with visible disabilities, but they couldn’t see the passengers with non-visible disabilities. It was very successful at Gatwick Airport. And we then rolled out to another airport here in the UK.

And first and foremost, it was very, very sensitive around the travel industry. But the sunflower is very, very organic in the way that it grows. An airport will take it on and then the Sunflower will then move from the airport, obviously, to the train. And then go from the train to shopping center.

So, it’s a very, very organic growth. The Sunflower then grew organically really across the UK at first. And we’ve touched all elements of society, from shopping to leisure to healthcare to education. Every element that touches our lives is picked up in some way or form by the Sunflower. And that’s really how the journey started for us, an organization. And that’s still the pattern we see now.

We will see an organization in a country. Usually, an airport will pick up the Sunflower because one of the airlines obviously is flying from an airport to there, which means the Sunflower wearers are wearing their Sunflower. And then organizations, businesses, will start to recognize that in that location and see the good in picking the Sunflower up.

Kelley Peterson:

I bet it does spread. The marketing term ‘guerilla marketing,’ where it’s unexpected and then you see it, or snow-balling effect of one person to one person, I just think if there was a visual map to show where it started and then just a ripple effect of the Sunflower, it would be a neat visual for that.

When you first started saying that sunflowers grow organically, I thought you were actually talking about a sunflower. And I like that play on the visual, too, because not only in real sunflowers, but your Sunflowers, as well.

So, tell me about… You talked about the tool and it’s a lanyard, badge or wristband. What is the importance of empowering people to wear it or not wear it on their own terms?

Paul White:

Well, first and foremost, wearing the Sunflower is a choice. It’s, people choose to wear the Sunflower because they want to be seen. And there’s no benefit in wearing the Sunflower, apart from being able to demonstrate that you have a hidden disability, and then organizations will then be able to provide you with that service.

And organizations then decide what they will offer to that person. So, in an airport, for instance, if they see you queuing, they may take you out of that queue and put you into the disabled queue, which will be… There is such a thing, because that will probably be easier for you.

It will enable people to stay with their families, for instance, instead of being split up in certain circumstances. So that’s how the Sunflower really works. And as I say, it’s a choice. People choose to wear the Sunflower to be able to demonstrate their condition. And there’s a number of different wearables. The most used one is the lanyard, really because it’s so wearable. You take it on, you take it off, you put your coat on it, that kind of thing.

But there are things that I’m wearing here, which is a pin badge. There are wristbands. So, there are a lot more… If people don’t feel confident enough to be able to wear a Sunflower, which is completely reasonable in regard to some people that aren’t completely confident they want to show their condition or they have a condition. There are a lot more subtle wearables such as the wristband that you can wear. And all businesses that we work with are trained to look out for all of the Sunflower products that we provide.

Kelley Peterson:

So, what are some examples of disabilities that aren’t immediately obvious?

Paul White:

So, an example of disabilities that aren’t obvious. There are seven kinds of types of disabilities. There are physical disabilities, of which an example of that might be something like cerebral palsy. There are sensory disabilities, which is visual or hearing impairments. There’s intellectual disability, which is learning difficulties. There’s mental difficult disability, which could be anxiety, for example. There’s visceral, which are some of the deficiencies in the functioning of an organ within your body. So, heart disease, for instance. And then the final type is what they call… I can never say it. Comorbidities or multiple disabilities.

And then, that is the interaction between multiple disabilities that creates a very specific result in every case. So, examples really are there, can include learning difficulties, mental health, physical mobility, speech, visual or hearing impairments. It can also include chronic illnesses such as diabetes or asthma. It really is any condition or impairment that affects a person’s day-to-day life. And living with these conditions can make daily life for many people very demanding. And without visible evidence of these conditions, life can be painful, exhausting and isolating.

Kelley Peterson:

So, what kind of barriers do people with non-visible disabilities face when traveling, shopping, or in the workplace?

Paul White:

Well, the biggest barrier that a person faces is the fact that their condition is non-visible and people aren’t able to offer support. In my experience, most people are caring, and most people will want to offer the support and understanding to a person if they’ve got the ability to do so.

And here at Sunflower, we are not experts on a specific condition, Kelley. We’re generalists. We support all disabilities of all kinds. So, the biggest barrier that we saw that the disabled community were facing was the fact that they wasn’t able to be able to show that they had a condition because that condition was not visible.

So, everybody will have a different take, if you like, in regard to their own condition. One thing that I’ve certainly learned through working at the Sunflower is everybody’s relationship with their condition is completely different. You’ve met one person with autism, you’ve met one person with autism. It doesn’t mean that no two people really are the same in any way that they experience their condition.

And also, in regard to the barriers that they would face, there is quite a difficult question to ask because that’s one of the questions you would need to ask the person who has the condition. But for me, and as I say repeating myself for the organization, it really was the fact that person’s disability is not visible, and we’ve now got the opportunity to be able to make them visible.

Kelley Peterson:

What types of accommodations might they need to overcome the barriers that you spoke about?

Paul White:

So, a kind of accommodation that a disabled person might need is simply, as I mentioned in travel, is simply allowing you to remain with your families at all times. Certainly around, you’ve got a neurological condition. You’ve got a lot of sensory challenges. That could be sounds, that could be lights, that could be smells within shopping centers. If you are visually impaired, making sure that the signs are of a large enough size to be able to read.

There’s a huge number of accommodations that can be made from step-free access, all the way through to making the signs more accessible for people who are visually impaired. For us as an organization, because we are generalists around and condition, we really focus on the ability to enable businesses to start that journey. And we really are the first steppingstone, if you like, as an organization, becoming stability competent as an organization.

The Sunflower really can be used as that catalyst to start that conversation within organizations around disability and then expanding your knowledge around what you need to do and the accommodations you should be making, do to make your location accessible.

Kelley Peterson:

So, let’s be that catalyst right now on this podcast. How about that?

Paul White:

Yes, that’s us. That’s what we’re here for.

Kelley Peterson:

Are you game for that? So, what advice do you wish you could give people who aren’t familiar with hidden disabilities?

Paul White:

The advice I’d like to give to people who do not have a hidden disability, really is recognizing the number of conditions that there are and the barriers that those people face. Within the UK, one in five of us have some form of disability. And 80% of those people’s disabilities are not visible. So, in the UK, that’s over 10 million people. That gives you an idea and a feeling for the sheer scale of the percentage of the population that are dealing with non-visible disabilities.

And if you look in regard to how businesses are supporting non-visible disabilities, one of the elements or the areas where we’ve been most proud within the Sunflower is how we businesses have used the Sunflower to start to create a culture within their organization that enables people to speak freely about these disabilities.

One of the areas that really is most challenging for businesses is to create that culture where a person is comfortable to be able to disclose that they have a condition, without fear that their job will be marginalized, or they won’t receive a promotion.

And that really is one of the biggest challenges that people face, because… And certainly, for businesses within the UK, the Equalities Act says that if you disclose you have a condition and businesses are duty-bound to be able to offer any accommodations that are needed or required for that person to do their job better. But you can only do that if a person feels comfortable to be able to disclose they have a condition. So, the Sunflower has really been used in businesses, as I say, to help create that culture of disclosure, make people feel more confident.

And as such, disability and hidden disabilities become much more seen, much more recognized, and hopefully much more accepted.

Kelley Peterson:

So, do you have a firsthand experience about how the Sunflower symbol has helped someone and to share its impact?

Paul White:

When I was talking about, when I first started with the Sunflower, one of the emails that I first received, and he still makes the hairs stand up in my arms now. A guy emailed me who had dementia and he used to play walking football with his mates at the local leisure center, and his wife used to take him there and drop him off and pick him back.

And then the bus company recognized and took on the Sunflower. And because the bus company recognized it, he was then able to independently get himself to football, play football with his mates and independently came home. And that really affected me as a person, that that person, what we gave for a simple symbol that we designed, or we brought to market, if you like.

That person was then able to regain his independence and really to regain control, if you like, over his condition and that was say was one of the emails that I had that really affected me and it still does. I’ve kept that email. It’s one of those ones that’s saved, it’s saved in my special folder. And whenever you are getting those bad days, that’s one of the emails that I get out and I read those emails and I really see the good that the Sunflower is doing and that really helps me to get through some of the challenging days.

Kelley Peterson:

I’m glad you have that folder and that’s an amazing story. KidGlov’s founder, Lyn Wineman, has a folder similar, a love folder of all those love notes and impact stories of our work. And I think those are really good for good, and maybe not so good, days.

Paul White:

Yeah, true.

Kelley Peterson:

That’s an incredible story. Paul, how has this movement expanded into other parts of the world? Are there any countries or areas that you’d love to see it go next?

Paul White:

So, the Sunflower is now locally recognized in the U.S. and Canada, Australia and New Zealand, in Ireland, Holland, Belgium, the Nordics. And we’ve recently just launched in the UAE, in United Arab Emirates. So, these countries now, we’ve now got a local presence providing the Sunflower in these regions and support and awareness is really growing within these countries.

The next country for us is, we are certainly looking to try and get into India. That will be very exciting to try and get into India and then really into the far East. And how we go about that is we use the airports, as I’ve said before. That we use the airport to support the Sunflower, to really be that steppingstone into a country.

With the Sunflower, not only the airports recognize it, but there’s also a number of airlines. That means people are supported from end-to-end on their journey. And then the hope is that they visit a country, they start moving around in that country, it starts to be seen, and then from there.

So, it really is… It’s been an incredible journey for us as an organization. Globally, we’ve distributed now over three and a half million lanyards globally, which is just incredible, an incredible number. We are recognized in over 20,000 locations globally for Sunflower wearers. But we’ve only really scratched the surface of this. If you use the equation I did, around one in five of us has a disability and eight of 10 of it’s hidden, globally, that’s billions and billions of people.

So, we’ve really just scratched the surface of this. Our work is nowhere near done.

Kelley Peterson:

Well, that’s definitely a motivator.

Paul White:

Absolutely.

Kelley Peterson:

That our work is not done. So, Paul, tell us about 2023. What do you have to look forward to?

Paul White:

So, for International Day of People with Disabilities in December of this year, we decided that we would like to create a database, as a list of the huge number of different conditions that people are dealing with. There really is no definitive list, Kelley, of the number of conditions.

There are obviously the different types of disability, which what I mentioned earlier, but there’s no one definitive list of all of these different disabilities. So, we thought to ourselves, well how do we get a full list of all of these conditions to show and to demonstrate to the general public, as I say, the sheer number of conditions that are there?

We decided that we, as an organization, are best known for the lanyard. As I’ve mentioned before, we’ve sold over three and a half million lanyards as an organization and it’s our most… It’s the product that we’re most known.

For 2023, we are showing a disability conference in the UK called Naidex on March 23. We are going to create the world’s longest lanyard, which we hope is going to be over 3,500 meters long. And every single meter of that lanyard is going to represent a different person’s condition. And we ask people to go onto our site and to add their condition onto our site.

And for every condition that gets, the lanyard will get about one meter longer. And the hope is, by the time we get to Naidex, it’ll be long enough to break the Guinness World Record.

Kelley Peterson:

I just love that idea. And do you mind, Paul, sharing with our listeners how this whole great concept came about?

Paul White:

So, I was in the pool swimming up and down, basically just in a world of my own, swimming backwards and forwards. And I were thinking, and the thought that went through my head was, I wonder if we’ve sold enough lanyards to go all the way to the moon and back?

That’s really what I was thinking. And then I thought around, I wonder if we could make a lanyard that’s so long that we could really use this as the ability to represent each person’s condition? Whilst I was swimming, I was thinking of these ideas and as I swim, ideas tend to drop in one at a time, which is quite convenient. So, whilst I was swimming, I was thinking about this idea. I then Googled it to see how big the current world record was and it’s currently 2,800 meters long.

I thought, well, we could definitely be there. And the idea for the lanyard really is as a visual point to, or a visual marker, really to show the sheer scale of conditions that are there. They’ll be able to show something that’s over two and a quarter miles long and each meter of that is a person’s condition.

That person is dealing with a different condition and the challenges that person faces is hugely exciting to us. So, the hope is, that on March the 23rd, we will break the Guinness World Record. The Sunflower will hold a record for the world’s longest lanyard and that will be in celebration of the number of hidden disabilities there are in society.

Kelley Peterson:

What a great event to look forward to. And then next stop, after the longest lanyard, is a trip to the moon, I bet?

Paul White:

That’s it. That is next. That might take a few more lengths in the pool, that one.

Kelley Peterson:

It might. I love that the creative spark happens in the pool, and I have them often when I’m asleep and I need to wake up and write something down. Sometimes I wake up and that’s the most brilliant idea. And sometimes I wake up and think, what was I thinking?

I’m curious how you take a note when you’re in the pool? How do you get this thought of brilliance, so you don’t lose it? You need waterproof paper or something by you. By the pool side.

Paul White:

I just hung onto it as long as I could until I got into the car. Whatever happened, I did manage to get it from the pool to my office to be able to write it down. And you’re right. It’s great that an idea like that has actually come to fruition. And we really, as an organization, we are hugely excited by the opportunity to do this and the opportunity to be able to create this list of conditions that doesn’t exist.

Within the list that we’ve got on the site, you’re able to, as I say, to put your condition and there’s the more known conditions that people have put down such as ADHD for instance, as a condition that people would know and recognize. But already, it is just a huge number of other conditions.

I mean recently, I made a note of it earlier. Somebody added a condition which is called Alice in Wonderland Syndrome, which basically is a neurological condition that changes the way that people see, hear, or touch objects. It was named as Alice saw her body grow larger and smaller, which inspired the name of the condition or the syndrome. So that’s just an example of how we are going to hopefully use this database, because there’s so many conditions that nobody’s ever heard of and the people that are living with that are obviously living with the challenges that condition brings.

Kelley Peterson:

If a business was listening right now and they wanted to offer Sunflower lanyards to their customers, how would they get started?

Paul White:

The best place to start is to visit our site at hiddendisabilitystore.com. To provide the Sunflower to your customers and colleagues, of course, as I’ve said, is simple. There are training modules that you can take, which basically cover what is a hidden disability? What is the hidden disability Sunflower? And what to do if you… And how to approach a person who’s wearing the Sunflower.

You would take the training modules; you would then provide the Sunflower products to your customers for free. We would then add you to our map, so that would then guide Sunflower wearers as to where they will be recognized. And we get a huge amount of hits. A lot of Sunflower wearers that I know, they have to be very organized when they go out because of their condition and because the barriers that society places on them. Simply leaving the house can be very challenging for some.

So, we get a huge amount of hits of people looking to see whether Sunflower’s recognize, that they will be supported. So basically, you add yourself to the map and that’s really it. That’s how you go about take it. There’s no need to be a medical expert in regard to being a Sunflower-friendly business, because as I say, there’s no need to know or ask what a person’s specific condition is. The Sunflower really is just a simple tool that person has a non-visible disability and to give you the ability to offer that person the support that they may need.

Kelley Peterson:

It’s really accessible for everyone.

Paul White:

Absolutely.

Kelley Peterson:

To be Sunflower-friendly, which I love. I’m inspired by motivational quotes. Could you give us a few of your own words of wisdom for our listeners?

Paul White:

The one motivational quote I thought about that I use really is, “Whilst we are all equal, we are certainly not all the same.”

And that’s a quote that I use a lot and that really, really demonstrates the meaning of the Sunflower for me. That all society is equal, but the people are dealing with so many different conditions and barriers in society. We just all need to be a little bit kinder to society.

We need to all learn to offer accommodations to others and recognize that people are dealing with, or some people are dealing with, a lot more than is visibly apparent. And it just resonates with me as I say that we just as a society, we just need to be a little bit kinder.

Kelley Peterson:

What a great message. Paul, how can our listeners find out more about the work that Hidden Disabilities Sunflower is doing?

Paul White:

We have a website, naturally, which is hiddendisabilitiesstore.com. We are also all over social media, so we are obviously on Facebook, Twitter, Instagram, LinkedIn. If you Google, Hidden Disabilities Sunflower, you will find us in some form.

Kelley Peterson:

As we wrap up our time together today, what is the most important thing you would like our listeners to remember about the work you’re doing?

Paul White:

That’s quite a difficult question. It really is repeating the message that I’ve been saying that the Sunflower is a simple tool that people has a non-visible disability. And if you see someone wearing the Sunflower, recognize that they have a condition and simply offer them time, care, support, understanding, and the most important one, kindness.

Kelley Peterson:

And that should not be hard.

Paul White:

Absolutely.

Kelley Peterson:

Paul, I fully believe that the world needs more Changemakers like you. Thank you for taking the time to share with us today.

Paul White:

Thank you for inviting me.

Announcer:

We hope you enjoyed today’s Agency for Change podcast. To hear all our interviews with those who are making a positive change in our communities, or to nominate a changemaker you’d love to hear from, visit KidGlov.com at K-I-D-G-L-O-V.com to get in touch. As always, if you like what you’ve heard today, be sure to rate, review, subscribe, and share. Thanks for listening, and we’ll see you next time.