Rick Guidotti's photograph of Jayne Waithera, a young woman with albinism

New Film Shows People With Physical Differences Aren’t Just ‘Beautiful on the Inside’

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Rick Guidotti was working as a high-profile fashion photographer in New York when he started to question the industry’s narrow standard of beauty.

“I never only saw beauty on the covers on magazines,” Guidotti told The Mighty. “I saw it everywhere.”

So Guidotti left the fashion industry to work with children with disabilities and visible health conditions like albinism, Marfan syndrome and ichthyosis. In 1998, he founded Positive Exposure, a nonprofit organization that works to change public perceptions of people living with physical and intellectual differences. He hasn’t looked back since.

screenshot from film of Guidotti photographing a young woman
Screenshot from “On Beauty” trailer below

Around five years after photographing his last fashion model, Guidotti is the subject of a new documentary that showcases the beauty in difference and dispels negative stereotypes around disabilities and physical differences. Directed by Joanna Rudnick, “On Beauty” follows Guidotti and tells many of his subjects’ personal stories.

One of the women featured, Sarah Kanney, is from upstate New York and lives with Sturge-Weber syndrome, a congenital disorder characterized by neurological complications and a facial birthmark. Because of the large birthmark on her face, Kanney was bullied so badly she left public school for home school when she was in eighth grade.

photograph of Sarah Kanney, young woman with Sturge-Weber Syndrome
Sarah Kanney. Photo credit Rick Guidotti, Positive Exposure

Jayne Waithera, another woman featured in the film, has albinism, a defect where the body is unable the produce melanin, the substance that gives skin, eyes and hair their color. In Kenya where she lives, people with albinism are misunderstood and heavily discriminated against, Guidotti told The Mighty.

Guidotti photographs young woman with albinism
Guidotti with Waithera. Screenshot from “On Beauty” trailer below
photograph of Jayne Waithera
Jayne Waithera. Photo credit Rick Guidotti, Positive Exposure

Working with Guidotti helped both women grow more comfortable their differences and, in turn, feel at home in their communities.

“[The film] shows how empowered a family and a community become when they’re allowed to see beauty in difference,” Guidotti told The Mighty.

“On Beauty” sends the message that beauty is everywhere — that we just need to understand how to see it, and, more important, find it in who we see in the mirror. Guidotti told The Mighty that once he began working with people with physical differences, he started noticing huge changes in their self-esteem.

“The first girl I worked with walked into studio with her eyes and her face down. [She] was stunning, but she had no self-esteem because of how society treated her,” Guidotti told The Mighty. “I showed her the photographs and I said, ‘Look at yourself. You’re stunning.’ Her smile lit up all of New York City. She needed to change the way she saw herself, and the community needed to change the way they saw her.”

Guidotti loves that he’s helped change how people with physical disabilities and health conditions see themselves. But he also works every day to change the way society views people who are different.

“Often when I’m photographing someone with a difference, someone will come and see the photographs say, ’You’re really capturing their inner beauty,’” Guidotti says in the trailer below. “And I’m like, ‘F–k inner beauty, these kids are gorgeous!’”

Take a look at more of Guidotti’s stunning photos and watch the trailer for “On Beauty” below.

photograph of young boy swimming in a pool
Photo credit Rick Guidotti, Positive Exposure
close-up photograph of young girl wearing glasses
Photo credit Rick Guidotti, Positive Exposure
photograph of young girl in a pink shirt
Photo credit Rick Guidotti, Positive Exposure
photograph of a baby boy
Photo credit Rick Guidotti, Positive Exposure

To learn more about Positive Exposure and see more of Guidotti’s photos, visit the organization’s website. For more information about “On Beauty” including screening information, head here.

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14 Truths People With Thyroid Disease Wish Others Understood

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Thyroid disease, an abnormal functioning of the butterfly-shaped thyroid gland, presents a host of symptoms and can often be hard to diagnose. The thyroid gland affects mood, weight and body temperature, and the result can be a person who appears lazy, antisocial and over- or underweight. Because of this, a lot of misconceptions exist around thyroid disease.

To help clear a few things up, The Mighty partnered with ThyroidChange to ask our readers, “What’s the one thing you wish others understood about thyroid disease?” Here’s what they had to say.

1. “Thyroid disease can derail one’s life.” — Chris MacCleod

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2. “The lack of focus and the fatigue we feel aren’t a result of us not ‘wanting to’ or ‘trying hard’ enough. Everything you do feels about 10 million times harder with this disease than to someone who doesn’t have it.” — Dawn Lehr

3. “We aren’t fat and lazy.” — Kylie Riley

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4. “My thyroid disease affects me differently than your thyroid disease.” — Amy Williams-Sherman

5. “Just because we don’t look sick doesn’t mean we don’t feel it.” — Carly Becker Greco

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6. “It’s not a death sentence, and life does not end once you have it. It’s a journey and I like to think [of it as] a journey to learning more about yourself and working to become a healthier you.” — Cyndi Murphy

7. “My body aches after a long day of work. I’m 30 but feel like I’m 50.” — Eddie Jilozian

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8. “It seems like you can’t get five days in a row [without] ‘burn out.’” — Richard Nickels

9. “[It] affects every part of your body and your life.” — Caye Wood

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Although it is a daily challenge, it was a blessing in disguise for me.

13. “If we had doctors and those around us who would listen and understand, it would be a lot better… Just because it’s a disease you can’t see doesn’t mean it’s not real.” — Michelle Martinez

14. “[We] struggle every day to feel normal.” — ChesterAnnette Lovato Estes

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*Some responses have been edited and/or shortened.

What would you add? Let us know in the comments section below.

 

14 Truths People With Thyroid Disease Wish Others Understood
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To the Preemie Mom Who Is Expecting Again

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I know you’re nervous. I know the minute you saw that double pink line that your heart leapt into your throat. I also know that you wish your heart had only done so with joy, but you had to admit that it was also in fear.

“What if it happens again?” you ask yourself.

Before you had your first preemie, the possibility of having a baby early might have barely been on your worry radar. As the end of your first trimester approached, you could breathe a little more easily. When your blood work came back normal, you relaxed even more. Maybe while browsing for baby clothes, you gently picked up a preemie outfit and thought, “How tiny! How cute!” but quickly put it back because you knew there was no way you would ever need something so small. Maybe you didn’t notice your viability date pass. Maybe you took your hospital tour early, like I did, and barely peeked in the neonatal intensive care unit (NICU) door, simultaneously admiring the strength of those inside and feeling grateful that you would never need to be that strong.

This time is different. This time, you have sat in a hospital bed while a neonatologist told you your child’s chances of survival and nurses patted your arm with pity in their eyes. You have had your baby snatched from your arms as monitors blared and his lips turned blue. You have listened to a semi-circle of doctors discuss how to keep your baby alive for one more day, or hour or minute.

It’s OK to be scared. It’s OK to feel like you couldn’t make it through another round in the ring with prematurity. But there’s something I want you to know:

You got this.

I don’t know what you will face this time. I can’t tell you that it won’t happen again. Oh, how I wish I could. I can’t even tell you that if it does happen again, it will be easier this time. If there is one thing we know about our babies, it’s that they don’t play by the rules, do they?

Preemie baby

I don’t know what’s going to happen. What I do know is that you are strong.

You have fallen in love with your baby through thick plastic walls.

You have changed an impossibly small diaper on an impossibly small person through the impossibly small holes of an isolette.

You have lain in a hospital bed with an empty womb and empty arms while listening to the sounds of new mother happiness all around you.

You have washed your hands so much that they cracked and bled, all just to touch your little one.

You have slept curled up in cramped hospital recliners and mastered the hospital sink bath.

You have learned medical terminology, procedures and equipment in a series of 10-second crash courses as doctors and nurses and therapists hurled information toward you at 100 m.p.h.

You know how to make a meal out of six quarters and one vending machine.

You can snap up a sleeper around heart monitors and IVs. You can swaddle without disturbing a PICC line.

You have done all this while healing from a birth that hurt in more ways than one.

And — regardless of the outcome — it really, really sucked, didn’t it? Nothing can change how much it sucked. But you were there and you were strong and you did what you had to do.

I hope so much that you never have to be that strong again. But if you do, I know that you will.

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You will take care of your baby in whatever way he needs you. Because you are a preemie mama and that is just what we do.

You are strong.

You got this.

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A mama who has been there… twice.

A baby sitting on a child's lap.

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What a ‘Great Day’ Means to a Person With Chronic Illness

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What makes chronic disease so challenging is that we’re never 100 percent. Our great days are different from yours; I promise you that. I think many of those who love us can misunderstand what a great day means to us, and sometimes feelings can get hurt. So let me share my parameters with you, and then maybe you can share yours or use this for conversations with your doctors, friends and family.

I have a baseline I consider my normal. I accept that my baseline is not perfect. It comes with serious and often excruciating pain and fatigue. My symptoms are managed with medicines that we dial up and down, depending on the severity of my symptoms. Within that baseline I have some great days, some good days and some bad days. This is my life and as a family we live in the baseline; we accept it and made peace with it.

So I have bad days in my baseline, too. Having a bad day means I stay in bed, watch TV and rest. On good days, I run errands, make dinner for the family and go to bed happy at 8 p.m. feeling satisfied and successful. A great day is a good day with a movie or the beach tossed in. All of these days are still filled with pain and discomfort. The pain is tolerated and managed. I can guarantee you that if I have a great day, the next day is a PJ or sweats day because I need to take it easy. It’s a dance. It takes practice.

On the scale of 1 to 10, I will never have a day that’s a 10. My body is not in the 10-generating business. For me, a 10-worthy day would be a day without pain, and I’d have the energy to do a full day of work and activities.

I want 7’s and would love two hours of an 8. I accept and celebrate a few hours of a 7 or an 8 on any given day. So that’s my goal. I try to make the best use of the energy and pain management on a given day. I need to take a siesta every day if I want to make it to dinner. That means I need to lie down on my bed for at least an hour or maybe two.

This is my life, my normal and I’m happy in this place. I take great comfort in this baseline. I recognize to many that it may seem limited, but I’m happy here. I don’t need much other than to enjoy and bask in the great days I get to spend with my family and friends together.

My baseline changed in May after a simple case of strep throat developed after my daughter, Norah, went on a third-grade field trip. (Let me be clear: I would do that field trip over and over again because third-grade field trips are amazing.) I’ve been battling for months, and in the last week, well, my body decided it was time to crumble. When my thoracic pain was too intense and I couldn’t find a break from the pain, we moved out of our baseline into messy territory, which is a flare.

A flare for me is when the pain and inflammation is widespread, systematic and unrelenting.I won’t call a flare a flare until it’s kept me in bed a solid three or four days. In the past, a flare also required extended stays in hospital. Now thanks to my amazing medical team, most of my care can be done as an outpatient treatment, and I can sleep in my own bed. When my lungs and heart get inflamed, I like to sit with my back up against a wall. It makes it easier for me to breathe somehow. If I lean forward, the pain is excruciating, and if I sit perfectly straight and don’t move, it’s tolerable.

The hardest part of managing a chronic disease is you never know how long a flare will overstay its “unwelcome.” The other problem with a flare is that if you do too much (like I did this week), it just sets you back even further from returning to you baseline. And so, planning becomes challenging. Does your spouse cancel his business trip? Do you call someone to stay with you? Do you line up a contingency on top of the contingency? The mental planning of a chronic disease is exhausting by itself, then you throw a Type A personality on top and it’s a hot mess.

a family including mother and father and son and daughter

I’m writing this for all the other pilgrims with chronic diseases who may not have the support and love that I do. Many of our loved ones are so thoughtful with dinners, carpools and visits. If you’re a loved one of someone with chronic illness, here are some things I think you should keep in mind:

Don’t ask if we’re feeling better yet. Instead, ask us, “Is today a good day?” Sometimes nothing hurts more than being reminded you “were” doing well. And whatever you do, don’t ask us if we overdid it to get here. That doesn’t help. We all want the same thing: to be one day closer to our baseline. Please be patient with us.

Tell your loved one that you love them and that you’re praying and thinking of them.

Make us laugh. Nothing makes me happier than to hear stupid stories when I’m in bed. I think trashy gossip magazines and mindless books are wonderful.  

Spend time with us. Just last night, my husband, Jeff, took me in my PJs to the beach. I just needed to look at the ocean. That was perfection. I watched the kids pick up shells, and I could see, smell and taste the ocean from the passenger seat. So offer to drive the getaway car for a friend or offer your own sofa. After being stuck in your house forever, sometimes another venue is delightful.

Today, I’m one step closer to my baseline,  and I’m humbled and grateful for all the love, prayers and notes from my loved ones.

Follow this journey on Pilgrimage Gal.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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My 6 Tips for Traveling With a Child With Special Needs

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We’re so lucky to have one of the best dermatologists we could imagine, and he has always encouraged us to do anything we normally would as a family even if it takes extra planning or if we need to get creative.

One of those things is traveling.

Even though traveling can be challenging figuring out the logistics for my daughter Brenna’s skin care and working around the various weather conditions (we couldn’t believe how much the dry state of Colorado affected Brenna’s skin; we had to apply nearly twice the usual amount of Aquaphor!), we’re grateful for the chance to show our kids some other parts of the country and give them new experiences. Since Brenna’s first vacation two years ago, she’s now been to 11 states. We haven’t flown yet, but that’s coming next year.

Here are six things I learned about taking on the open road with two small kids and caring for a medical condition along the way:

1. Always know where the closest children’s hospital is.

A physician we saw in Chicago made this comment to us after Brenna’s gastrostomy tube (G-tube) was placed, and it was one of those obvious statements we had never considered before. We researched surrounding hospitals on Brenna’s first trip, and we actually had to stay overnight in a children’s hospital with my son Connor on last year’s vacation.

2. Alert your physicians/specialists and work out a plan for contacting them after hours if necessary.

We’ve called our pediatrician from the road and texted photos of Brenna’s skin to our dermatologist while traveling. We also coordinated a prescription to be picked up at a pharmacy during a stop. Things always seem to pop up on vacation, but when you’re dealing with a serious medical condition, it’s really important to be able to contact your doctors.

3. Bring way more than you think you’ll need.

If you have the luxury of traveling by road instead of plane, you can pack the trunk full of anything you think you might need. Of course, you can always purchase many things while on vacation, but if there are special products, like prescription meds you use only occasionally or favorite foods, bring it all. That also goes for any extras like a back-up G-tube or any other medical items.

4. If there are special accommodations that need to be made at a hotel, restaurant, theme park, etc., call ahead.

Keep a clear record of the agreement of those accommodations and have a plan in place to carry them out if necessary. We haven’t had to do this yet, but I’m already anticipating some contact with the airline before our trip to the FIRST Family Conference in California next year.

5. Let it go.

Caring for your child on the road might may not match up with what you can do at home and that’s OK. I think that “good enough” is much easier for traveling. We always look forward to a great bath after a trip, but Brenna’s skin has been fine when we let her enjoy vacation even if it’s not at its absolute best.

6. Realize that it may be tiring, but it’s so worth it.

I think traveling with small kids or children with special needs gets easier the more you do it. I thought our first vacation would be miserable, but the kids rode more than five hours without stopping with very little fussing. And the whole week was much less stressful than I had imagined. Practice with smaller, more frequent trips. I’m glad we had some three- to six-hour trips under our belt before we drove across the country last year.

Courtney Westlake the mighty.1-001

Follow this journey on Blessed by Brenna.

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There's More to This 'America's Next Top Model' Contestant Than Meets the Eye

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Nyle DiMarco is more than just a pretty face. He’s making strides for the deaf community.

The 25-year-old model and actor is the first ever deaf person to appear on Tyra Banks’s long-running reality TV show, “America’s Next Top Model.” He’ll compete in the show’s 22nd season, set to air on August 5 on the CW channel.

Screen Shot 2015-07-31 at 12.00.23 PM
Via Instagram

DiMarco only started pursuing modeling last fall after several photographers asked to shoot him. He says that so far he hasn’t encountered any difficulties with being deaf in the profession, the Fredrick News Post reported. In fact, DiMarco says speaking American Sign Language (ASL) has helped him to read the expressions on the photographers’ faces.

Sometimes hearing photographers would question (my) ability, but then they would be proven wrong and even impressed,” DiMarco told the Fredrick News Post. “ASL requires facial and body expressions, so that is indeed a skill that would not only surprise people but bring energy and story out of a picture.”

This isn’t DiMarco’s first TV appearance, as he played the role of “Garrett” in the ABC Family show “Switched at Birth,” Reality Today reported.

Check out some photos of the model below:

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Via Instagram 
Screen Shot 2015-07-31 at 12.20.57 PM
Via Instagram
Via Instagram
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Via Instagram
Screen Shot 2015-07-31 at 12.27.14 PM
Via Instagram
Screen Shot 2015-07-31 at 12.28.14 PM
Via Instagram

 Go here to see the America’s Next Top Model cycle 22 trailer.

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