A model with a disability was unable to speak at a panel about inclusion in fashion after the event didn’t provide her with a wheelchair ramp.

Chelsey Jay, 24, from Essex, England, was attending The Clothes Show, an annual consumer exhibition, to speak about disability inclusion in the fashion industry as part of a seminar.

However, when Jay arrived at the event in Birmingham, England on Tuesday Dec. 8, they’d begun the panel discussion without her and not provided a wheelchair ramp for her to access the stage, which was about 15 inches off the ground, she said in a statement on Twitter. Jay, humiliated, left the event without getting to speak.

Jay has Postural Orthostatic Tachycardia syndrome, or POTs, a rare condition that affects the autonomic system and can cause a person to pass out upon standing up. When she was 20, Jay was working in a hospital ward training to be a nurse when she suddenly passed out and was later diagnosed with the condition, according to her website.

“It was literally like I woke up that morning a normal 20-year-old, passed out, then woke up trapped inside the body of an 80-year-old. My mind was the same, but my body, my body was alien to me, like it wasn’t my body anymore,” Jay wrote on her website, about the moment POTS first affected her. “I’ve literally never been so terrified in my whole life, in that moment, that feeling, unexplainable.”

In the four years since her diagnosis, Jay has become the director of disability at an advocacy group called Models Of Diversity, working to make the fashion industry more inclusive of models with disabilities. Her appearance at the seminar during The Clothes Show was on behalf of Models of Diversity.

“The fact that I was there to talk about disability inclusion in fashion, at a fashion event that excluded me, is laughable, but is not a joke,” Jay said in a statement. “It’s real life and it’s reality to so many disabled people every single day… Sadly, the Clothes Show has just perfectly highlighted the struggles I have had for the three years I’ve been campaigning for this.”

The Clothes Show said it was due to “genuine human error” that the access Jay required to take part in the seminar was not made available on time, according to a statement sent to The Mighty.

They’ve also made several attempts to apologize to both Jay and her organization, but Jay has refused their calls so they also apologized on social media.

“The Clothes Show is committed  to nurturing and supporting the future of British fashion by promoting diversity to visitors at the show and has a policy to present a healthy, positive body image and work with models from all ethnicities, sizes and ages to visitors,” The Clothes Show said in a statement. “The Clothes Show has always taken very seriously its duty of care to harness its influence among the show visitors through the way we present fashion on our catwalks as well as through our Education Program and content on our feature stage and will use our influence among young fashion-lovers in a responsible way. We will however continue to learn, and it is our intention going forward to build on how we represent all sectors of the community.”

For more on Chelsea Jay’s advocacy work, visit the Models of Diversity website. 

h/t The Huffington Post

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Last week, Apple CEO Tim Cook joined the Cerebral Palsy Foundation’s “Just Say Hi” campaign. Now, when you take your iPhone and ask Siri how to start a conversation with people with disabilities, the digital assistant will respond with, “It’s easy. Just say, ‘Hi.'”

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When The Mighty reported on the “Just Say Hi” campaign in October, we got mixed feedback. Some readers told us they absolutely loved the initiative while others found it condescending towards people with disabilities.

So let’s start a conversation. Read up on the campaign here, and let us know your take on it in the comments below.


People often say “God only gives you what you can handle” when they don’t know what else to say. As a mom of a complex child, this phrase has been uttered to me many times with a gentle smile. At first you want to believe that God hand-picked you for a rewarding task. God believes in me more than he believes in you, which must be the case since you don’t have a medically fragile child. You were not chosen to live this life. This life of inescapable worry, beeping machines and constant therapy. Tears in the car after an appointment, sobbing until snot runs down your face in the shower after a bad day.

In the beginning when it seemed like we were drowning in appointments and uncovering new “gifts” our son’s diagnosis handed us each day, I kept thinking, just exactly who does God think I am? He must not really think Johnny’s mom can “handle” this kind of stuff because they haven’t been given what we have.

There were days I wanted to shake my fist and yell, “Are you done yet?!” One thing after another. Really, God? Are you done? I’m not standing here indestructible wearing a cape; I am standing here with shaking knees swimming in uncertainty.

Then something happens. You can handle it. You do handle it. You wake up. You show up. You go to appointment after appointment and run in the longest marathon of your life. You incorporate therapy into everyday play. You adapt your house to where your child has an environment where they will thrive. You find joy. Expectations are thrown out the window, and celebrations happen daily.

Now don’t get me wrong, we aren’t all smiles at our house; there are still plenty of tears and occasional urges to kick the door. But more than anything, we are thankful. We are the lucky ones.

Today we are handling it, whether I believe God gave it to us on purpose or not. Today. Tomorrow. We will wake up and show up. We will do what we have to do, shaking knees and all. Our grief may be greater, but so are our joys. The other day, I almost couldn’t contain my tears when my son’s physical therapist said he purposefully reached his hand into a jar to grab out a toy. I simply can’t explain the feeling of pride and joy. Imagine crying simply because your child has the ability to hold an object. Sounds so simple, but for him, it’s not. Our son has altered our perspective. He is making us into a better family.

I don’t know if God really only gives you things He knows you can handle. I don’t know if He has a measuring tape and hands out challenge after challenge based on your measurement of strength. I don’t know if He saw something in us. I don’t know if that phrase is true, but I do know that when our son looks at us, he sees our strength. He sees that we will never give up. He sees the love in our eyes. He knows. Whether God chose us or not, our son knows.

Follow this journey on Team Christopher S.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.


Last week, a grieving father asked a Santa Claus at the Georgia Square Mall in Athens, Georgia, to pose for a photograph holding a picture of his son Hayden, who passed away last year.

That Santa, actor Caleb Ryan Sigmon, agreed.

Baby Hayden
Photo via Caleb Ryan Sigmon

“I didn’t ask any questions, but I am guessing this is [Hayden’s] first photo with Santa,” Sigmon wrote in a moving Facebook post alongside the photo that’s been shared more than 32,000 times in two days. In it, you see Santa looking down at a framed image of a smiling baby wearing a hospital band. Hayden’s father told Sigmon the photo would be a gift for his wife this year.

“I’m sharing this to remind us all that Christmastime is unbelievably hard for some families,” Sigmon wrote. “Pray for the brokenhearted. Smile at people. Just be kind. Love one another.”

Stories From The Big Chair:A man walked in today holding something in his arms. “I have a request,” he said, turning…

Posted by Caleb Ryan Sigmon on Wednesday, December 9, 2015

 

The Facebook post reads:

Stories From The Big Chair:

A man walked in today holding something in his arms. “I have a request,” he said, turning around this picture frame. He took a moment. “My son passed away, last year.” He choked up and couldn’t finish his sentence. The entire photo set was silent. I said, “Absolutely.” Without anyone saying anything, he handed me the frame and I placed it on my knee. In the photo, I could see on the little boy’s armband that his first name was Hayden. I didn’t ask any questions, but I am guessing that this is his first photo with Santa. The camera snap was the only sound I could hear through the entire mall. Normally, I hear all kinds of music and sounds, but it was absolutely silent. After a handful of clicks, we walked over to the screen and he pointed, saying, “That’s the one.” The girl working the computer printed him a full photo package and he pulled out his wallet, saying that this was going to be his gift to his wife. We gave him the printed package, telling him that it was a gift and that we would be praying for his family, this Christmas. He grabbed my hand and pulled me in and hugged me, then turned around and left. As he walked out, we all had tears in their eyes. I’m sharing this to remind us all that Christmastime is unbelievably hard for some families. Pray for the brokenhearted. Smile at people. Just be kind. Love one another.

The Toymaker
Photo via Caleb Ryan Sigmon

Sigmon, from Hudson, North Carolina, has worked as a mall Santa for two years, but really he’s been preparing for this role since he was 3 and assembled a suit, sleigh and reindeer in his grandma’s living room. A few years later she made him his first custom suit. He began dressing as St. Nick for elementary school and later high school chorus concerts. “I got hooked!” he told The Mighty in an email. The pastime is a family affair. His dad worked with Santa for a good number of years alongside his mom doing home visits free-of-charge.

Caleb Sigmon
Photo via Caleb Ryan Sigmon

About two weeks before Thanksgiving through Christmas Eve, Sigmon works about 400 hours. He shares moments from work on Facebook, calling the series “Stories From the Big Chair.” His posts have become so popular among his friends that he’s considering turning them into a book or one-man show.

Despite the hundreds of photos he’s taken, he’s never had a moment quite like the one with Hayden’s father. He told The Mighty:

People ask Santa things they just don’t tell other people. Not just children, but grownups, too. Of course, there are adults that ask for a fancy Corvette or joke about being on the “Nice List” this year… But there are also those that ask for very serious things. I’ve had more adults ask me for jobs this year than ever. They are asking me for a Christmas miracle. How do you respond to that? I once had a man in a wheelchair ask me for legs. I’ve been asked by boys and girls to bring their father home or the keep their parents together.

I can’t do these things, but what I can do is pray for them.  I make them that promise, and I keep it. Some instances have allowed me to pray for them right on the spot.  This is a responsibility of my job that I take very seriously.


It’s Hanukkah, and our family couldn’t be happier. Eating latkes smothered in sour cream and applesauce. Lighting the menorah together and watching the candles slowly burn all evening. Observing the kids’ hysteria build as it gets closer and closer to the moment they get to open presents. Adding fuel to the hysteria by throwing jelly donuts and Hanukkah cookies into the mix. We wait all year for these eight crazy days of fun, and it’s finally here!

In addition to deep-fried food, candles and gifts, we look forward to celebrating by inviting the people we love the most to come to our home to share in our fun; however, with our son Nate’s disability, having visitors can be tricky.

Nate’s a little slow to warm up to newcomers. He doesn’t put much effort into making our guests feel welcome and would probably prefer if they didn’t come at all. Instead of demonstrating his growing vocabulary, emerging social skills, successful toilet training and full-body hugs, he’ll likely choose to scream loudly and often, refuse to greet visitors and amp up the obstinacy he’s so good at!

For many of us raising children with disabilities, welcoming people into our homes around the holidays can be stressful. So, in preparation for our most welcomed and highly anticipated visitors, here are some tips for visiting our family:

1. Focus on skills, not deficits.

When visiting our home, you will definitely notice Nate demonstrating inappropriate and unacceptable behaviors. He will hit his mom when he’s frustrated. He will scream when he doesn’t get his way. He will be spoon-fed instead of feeding himself. Keep in mind, though, that for every “bad” behavior you see, there are other skills we’ve been tirelessly chipping away at. Did you notice he’s toilet-trained? He says please and thank you? He most likely won’t undress in front of visitors? We work hard every day to improve, and we also have become good at picking our battles. Most importantly, we’re so incredibly proud of how far he’s come.

2. Transitions can be hard.

For us, it happens every single time. Nate doesn’t stop what he’s doing and moves on to the next activity without some protest. Sometimes it’s a little yell, and sometimes he’ll really let it rip. We almost never decide to not switch activities. His protest doesn’t mean he doesn’t want to do what’s next, and it doesn’t mean he’ll protest the whole time. Just push through, wait five minutes and he’ll recover. Ear plugs are optional but recommended.

3. Remember that he understands more than he speaks.

Nate listens and understands what you’re saying. His feelings can get hurt, and he can form ideas about himself based on what he hears people say about him. Please be thoughtful about his feelings and self-esteem. Of course, he’s a fantastic secret keeper, so you can confide in him and know with confidence that his lips are sealed.

4. Let him warm up slowly.

Start with a wave from across the room or maybe a high-five. Nate may not remember you from last time he saw you and might be feeling more stress about your visit than he can express or understand. Give him time and lots of chances. Be interested in his toys, his room, his favorite TV show, his Xbox and his dog. He’ll come around.

5. Don’t take it personally.

Nate will probably tell you to leave and maybe even to shut up while you visit. He might turn his back on you and refuse to acknowledge your presence. Please don’t feel hurt. He isn’t intentionally trying to hurt your feelings. He is just expressing his discomfort in the only way he knows how.

6. Ask lots of questions.

We understand that Nate is different from any other kid you know, and that much of what he does appears confusing or weird. It’s amazing, though; once you know Nate better, a lot of his behaviors and language are more understandable. Ask us questions, and we will do our best to answer them. If you ask a question we’re not comfortable answering, we’ll let you know. Mostly, we’d love to tell you what we’re working on, which methods we’ve found helpful (and which ones aren’t) and our thoughts about Nate’s future. In fact, he’s one of our favorite topics.

7. Give siblings all the attention they deserve.

While Nate’s antics can take up more than his share of the attention, remember that our other son, Isaac, is here, and he needs and deserves to have his family show equal interest in his goals, challenges and plans for the future. Just like Nate, he is an incredible kid. In fact, show interest in his Xbox and his dog and you’ll make him happy, too.

8. Watch how we interact and do what we do.

The best way to learn how to be with Nate is to watch his family. Mom, Dad and Isaac are Nate experts and know what works. We know when to be firm, when to use distraction, when to offer a reward and when to resort to a time-out. Most everything we do is thoughtful, intentional and done with years of experience behind it. Be wary of offering suggestions, especially in the middle of a stressful situation. It’s safe to assume we’ve tried everything (twice) and have zeroed in on what does and doesn’t work for us.

9. Jump in to help.

Don’t wait to be asked. If Nate needs to take a walk during a long sit-down dinner, offer to take him. If he wants company watching “Justice League,” sit with him. If it’s bedtime, offer to read him a story. It’s not always easy for Nate’s parents to ask for help, but it’s usually very much appreciated.

10. Love him for exactly who he is.

Nate is silly, loud, inconsiderate, affectionate, extremely messy and a total handful. He can make you laugh and, minutes later, cause you to pull your hair out in frustration. He will drop a rock in your drink when you’re about to take a sip and tell you to shut up when you compliment his T-shirt. Love him in spite of it. No, better yet, love him because of it. Take time to get to know him and learn what makes him such an incredible, complex, multi-dimensional person. Nate is one of our never-ending sources of love and happiness, and we are so overjoyed to share him with you.

Happy holidays to everyone celebrating this time of year!

A version of this post originally appeared on Informing Families.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. 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 Submit a Story page for more about our submission guidelines.


For a year after my son was born, I walked around in “unforgiveness.”

For those who have been on the journey into motherhood with me, this may come as a surprise. I am a generally happy person, and I openly celebrated the many blessings that came with the birth of my son 16 weeks early.

However, to be honest, it was the most traumatic experience of my life, and it has had many lasting repercussions. My family and friends lived on prayers during most of his NICU stay. My beautiful little innocent baby boy had to undergo too much, too soon. And it was my fault.

As all mothers do, I wanted the first 18 years of his life to be easy as pie. I was devastated when this was not the reality. As the person in charge of carrying him for the agreed upon 40 weeks, I could not help but feel like I owed him an apology.

So as I simultaneously thanked God for bringing him through the hospital stay, vision issues, surgeries, illnesses and challenges, I blamed myself for their existence. I enjoyed watching God work but felt bad. He had to spend so much time on my child. It was really, really hard living in uncertainty. The professionals call this post-traumatic stress disorder. I call it feeling inadequate, burdened and helpless. It’s a feeling many parents of challenged children can live with daily.

Until they get to forgiveness.

When we first left the hospital, I was high on the miracle, so high I refused to accept that his prematurity would result in delays. And then, as the delays began to show themselves, so did the more intense feelings of guilt. The “unforgiveness” grew. If I had only carried him long enough, made better decisions, rested more — the therapies, doctor appointments and evaluations would not be needed. These were my everyday thoughts. Watching him struggle to sit up, when most babies do it so effortlessly, broke my heart on many occasions.

I had been warned that this would come, and it was all a part of being a preemie mom. I also knew he was improving tremendously with therapy. The reasoning, however, did little to calm the blame on myself. I began to feel discouraged and struggled to find a place for these feelings. So I kept searching, finding new approaches, counting triumphs. Each milestone he hit developmentally removed a stone from the mountain of guilt I had created. But soon after, I would replace it with a new one. And this — this constant building and tearing down — was my emotional life.

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And then a few weeks ago, my son gave me the gift of a lifetime. We were sitting in the living room, and he was on the floor playing. He was laughing, reaching for his toys and exploring his world. He was happy. Growing. Thriving. Perfect. No, he wasn’t doing what 13-month-old babies typically do, but he didn’t seem to know or even remotely care.

Yes, he was learning more and more each day, and we had somehow ended up in this place where he was like a regular child. He was moving forward, and I was the only one stuck in the challenge of his prematurity. My boy was moving on with his life. And in the innocence of his playtime, he spoke to me so clearly. His spirit said to mine, “Mommy, I am fine.” Get over it. And finally, I allowed my heart to hear it. In that moment, more gratefulness came over me than I had ever experienced at one time. My guilt began to feel unreasonable. I had finally arrived at a place of forgiveness, and my son had escorted me there. It was as if my son was born to me again, but this time with only joy and happiness. No regret.

Through this I have learned that when things don’t go as planned, the vulnerability of disappointment can easily grow into negative feelings. But we must keep moving and leave them behind. They are distractions to our blessings. My son had already learned to do this. If we are to enjoy the rainbow that comes after the storm, we must first forgive ourselves for not carrying an umbrella. The journey is filled with too many miracles to get stuck at the mirages. For it is true — through challenges, I believe we become closer to God and more aware of our power to pray and be heard. Forgiving ourselves is the only way to make room for it all.

I have vowed from this day forward to only enjoy my son. To never let anything dim the light he has placed over my life. To allow him to discover his abilities as he pleases. He and I will completely live in the now. This is important for him but also for me. I deserve to be happy.

And he deserves a mother who has forgiven herself.

Kaleena.1-001

Follow this journey on Praying4MyPreemie.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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