Radiation caused my hidden disability with Kellie La Follett

Chantal Boyle:
Joining me today on the Sunflower Stories is my colleague Lynn Smith, who is stateside for Hidden Disability Sunflower. How are you, Lynn?

Lynn Smith:
Hello. Great. Thank you.

Chantal Boyle:
Good.

Chantal Boyle:
Our guest today is Kellie La Follet.

Kellie La Follet:
I am so happy this morning. It is such a delight and really such a privilege to be with you Chantal, this morning. Thank you.

Kellie La Follet:
I live nestled into the foothills of Mount Hood. My home's about an hour and a half from the Pacific coastline. So, you and I are quite some distance apart. It's lovely to be connected today.

Chantal Boyle:
Your kind of family situation.

Kellie La Follet:
Yeah, that's an interesting question to lead with.

Kellie La Follet:
I think there's a statistic out that says something like 70% of people with disabilities lose the majority of their friends and that sort of thing. In my particular situation, two years ago, four days prior to my 28th wedding anniversary, my husband ended our marriage. I think we have to all remember that whether disability is hidden or otherwise, the person affected is not the only one affected.

Kellie La Follet:
Friendships change over time. I have a lovely support from my sweet mama. She's a treasure in my life, connections through church, and a few friends that have stayed very loyal and close.

Chantal Boyle:
I'm very sorry to hear that happened to you. It's comforting to know that you do have a good support network around you. Can you tell us about what your health conditions are? How long you've had them?

Kellie La Follet:
Yes.

Kellie La Follet:
Some disabilities people are born with and then some step into our lives on days we've never imagined, right?

Kellie La Follet:
I had a morning. I got up, fixed breakfast, pack my lunch, and headed off to school. I was an elementary school teacher. We were having a teacher in-service training. During that training, there was a mass radiation accident that burned basically any exposed skin. So my face, eyes, neck, hands, all of that.

Kellie La Follet:
It became a before and after fulcrum in my life, where some people... It's really interesting. Some people have told me that I'm lucky because I have a day that the disability started. I thought, "Oh." The first time I heard that, I thought that was such an interesting perspective, Some disabilities come on over time, right? There's vagueness to them, which can be difficult on people's hearts.

Kellie La Follet:
I do have a day. It was November 12th, 2004. We're about a month away from my accident of 17 years ago.

Lynn Smith:
During the accident, were you the only one that was affected by this radiation? Or did it affect many teachers in the room?

Kellie La Follet:
We were gathered in a school gymnasium with tables and chairs set up for an all day in-service. Where I sat was the focal point, kind of the ground zero point of the accident. When OSHA, the EPA, and all the different agencies came in to investigate, all the measurements were taken from my seat outward. From that accident, depending on what report you read, about 80 of us were burdened that day. There's been five of us that didn't recover from the accident, which were all grouped most tightly together.

Chantal Boyle:
That's so traumatic. I mean, physically, emotionally, mentally. Are you in pain all the time?

Kellie La Follet:
The nature of a radiation accident is the burns continue. They continue to worsen over time. My pain is literally 24 hours, but growing... I don't notice the growth, necessarily day-to-day. Every few months, I'll realize, "Oh, I could do this a few months ago and I can no longer do that." The pain, it's a very hot burning pain in my eyes, but also just extreme light sensitivity. Being exposed to basically any amount of light exasperates that pain.

Chantal Boyle:
It really is a non-visible disability, isn't it? Because I'm looking at you now, and it's absolutely no way that I would ever have imagined that you've been involved in such a horrific accident like that. Do you ever leave your house?

Kellie La Follet:
To leave my house, I have specially hand-tinted dark glasses that only allowed 2% light through. I wear a black visor. I have a black umbrella. Usually someone holding my arm to help me navigate, to lead the house.

Kellie La Follet:
Yeah.

Chantal Boyle:
Is your vision okay?

Kellie La Follet:
My vision is not okay. It is also failing. I have all kinds of assistive devices-

Chantal Boyle:
All right [crosstalk 00:05:56].

Kellie La Follet:
... here. My vision decreases with time. My pain in light sensitivity increase with time

Chantal Boyle:
May I ask, was it from like a power plant or something like that?

Kellie La Follet:
It was actually a broken metal halide light bulb. Metal halide lights are you used to light big areas like school gymnasiums. The glass is actually the filter that prevents the radiation from escaping. The radiation creates the light inside the bulb and the glass houses it. Well, in this case, a volleyball had hit the lights, it flexed in, and it broke the bulb, what we think of as the bulb, the outer glass. It happened to be a day when there was a substitute teacher and a substitute custodian. So when we came into the in-service then, after this had happened and sat stationary underneath that, there was no filter for the radiation. Every eight minutes, we sat in that in-service training, we exceeded a 24 hour exposure. We were in there about five hours and 20 minutes. By the time we left, skin was coming off. It was awful.

Chantal Boyle:
At the end of your workshop, was it visible for people to see?

Kellie La Follet:
Do you know what tomatoes look like in the off-season? When they... There's sort of not really a good looking red.

Chantal Boyle:
Yeah.

Kellie La Follet:
We were all that color. Some people had skin coming off because it's radiation, it continues, and burns. It didn't peak. It's kind of... Think of getting a sunburn. You don't realize you're getting it until evening, right? Then, it starts really showing up and amplifying. This was something like this. Between midnight and three o'clock in the morning, the hospitals were flooded.

Chantal Boyle:
Has this changed legislation policies?

Kellie La Follet:
First of all, we didn't know it was a light bulb as were there. Even as educators, who's ever heard of being hurt by a light bulb. Other than maybe if you touch it when it's too hot, right? You don't think about like, "Oh. Well, that's a dangerous item, for the most part." Despite tremendous opposition from the major lighting companies of the world, we were able to get a law passed banning those lights. We even worked with the local utility companies. When schools had to replace their bulbs, there was all kinds of incentives. There was actually very little cost to the schools.

Chantal Boyle:
Yes. So you're on the campaign to get the Sunflower recognized in America.

Kellie La Follet:
Since I've learned about this, I am so passionate about sharing this story. The other time I thought about is, again, when I had more function. I could travel. I was flying by air to the Boston Foundation for Sight, which is clear across the country, about a six hour flight for us. I get on the airplane. Again, glasses, dark visor, the whole thing. The steward of the cabin came to me and said, "You need to remove those things. You don't need them inside the plane." I very much needed them inside the plane. I tried to explain to them I'd been in a mass radiation accident. He just kind of walked off frustrated and not understanding clearly. That's the start of the flight. Then, I landed in Logan airport in Boston. Just being out, airplane lights on and off, windows, I'm in so much pain. By the time I get there, I leave the chap way and there are lit advertising signs down the concourses. I literally can't even move.

Kellie La Follet:
Picture this. I'm inside an international airport. I opened my black umbrella because it is literally the only way I can take the next step. I was terrified thinking that someone might think I'm a terrorist or just not understanding, right? Can imagine seeing someone with an umbrella opened up inside of an airport, this day and age, right? But if we had a Sunflower, so much of that... It was both physically painful, but it was also emotionally painful. I was scared. I didn't know what people would do as I'm trying... All I wanted to do was get out of the airport. With a recognition, the airport staff or the cabin stewards were trained on airlines and things like that, none of those things would have been the degree of a problem that they were.

Kellie La Follet:
Yes, I just feel so passionate. My heart is that if someone's living with a disability, there's already so much happening in their lives that is difficult and hard. What a lovely way to help honor them, and just a little something to make life a bit easier.

Chantal Boyle:
I think Lynn and I would agree that airports have been really forward-focused in supporting the Sunflower. They recognize you've got a massive... Many different people from different areas, different places, different walks of life. One in five of those will have a disability. It's crucial that they are looked after, the customers are looked after. It's really important.

Kellie La Follet:
On one of my trips to Boston Foundation for Sight, my doctor rolled his chair up really close. He took my hands and he says, "Kellie, you've got a really hard battle ahead of you. When people have a prosthetic arm, a prosthetic leg, or a wheelchair, even if I don't fully understand, there's some instant empathy or tenderness of the heart that you feel. Kellie, you have in the same way, prosthetics," I've got these giant lenses in both my eyes that hold medications and create a liquid bandage over my eyes. They're in right now, but nobody can see them, right? He says, "You have justice. Someone needs one of those prosthetic devices to function. You need this for function, but nobody's ever going to be able to see it. You're your own worst enemy. You take an invisible prosthetic device or an invisible disability, a hidden disability, then you throw a smile on top of it. No one is ever going to understand the amount of pain that you are in."

Kellie La Follet:
Just, just like your question, right? You don't look disabled, which is wonderful, but it does cause all kinds of problems. It's also the reason for the Sunflower, right? This says something's going on that you can't see.

Chantal Boyle:
I think the thing about the Sunflower is that when you're wearing it, it's only to let people know that you do have a disability. There's no requirement for you to explain what that is, unless you, as the wearer wants to.

Chantal Boyle:
Kellie has a real sparkle about her. There's an aura sort of glow around her. She's got a beautiful smile and a really beautiful way of talking, which you'll be able to hear. Is this your character pre-accident?

Kellie La Follet:
I think what you see or experience coming from me is the recognition that I put my focus on my blessings. The things that I'm grateful for and still have, and hope to share with others versus counting the losses.

Chantal Boyle:
If somebody was thinking, "Oh. I don't know whether to wear the Sunflower. Would it make me a target? I don't know. Would it helped me?"

Chantal Boyle:
What would your advice to them be up about that?

Kellie La Follet:
Well, yes, it would make you a target. Make you a target for kindness. It's almost like one of the greatest mobility gifts, right? It's so simple. As it grows in recognition, I think our world would be a kinder place.

Chantal Boyle:
Well, thank you so much for joining Lynn and I, on the Sunflower-

Lynn Smith:
Yes, thank you.

Chantal Boyle:
... [crosstalk 00:15:21] Stories. I'm sure that with your beacon of positivity, you are going to really help us spread and raise awareness of the Sunflower.