Voicing difference


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Media caption‘Inspiring’ ex-teacher helps disabled children

“No matter what, you’re always able to do anything. Never give up,” says Owen, who has the bone condition arthrogryposis.

Owen cannot use his arms or legs so he moves around by rolling on the ground.

For children like Owen, a Facebook page has given them a chance to share what they want the world to know about their diagnosis.

The page, Special Books by Special Kids (SBSK), is the brainchild of Chris Ulmer, who worked for three years as a special education teacher in Florida (known as special educational needs teacher in the UK).

“The students in my class were amazing. They were funny, engaging and charismatic,” Chris says.

“But the rest of our neighbourhood didn’t really understand them. Nobody valued them. I wanted to show off these individuals and help them show the world what they had to offer.”

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SBSK

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The biggest concern for Owen (l), seen here with Chris, is how people will react to him in public.

After trying to tell the stories in a book (“It was rejected by over 50 publishers”, he laughs), Chris began to film interviews with his students and post them on social media.

Now he has more than one million followers and travels the world interviewing people of all ages inviting them to tell the world what is special about them.

He refers to his subjects as “neurodiverse”.

“It means everyone’s brain is diverse and when you respect that idea, you begin to see that everyone is the same,” he explains.

“I consider it my role to normalise the diversity of the human condition.”

One Facebook user commented: “You have a heart of gold.

“More importantly, through your videos you have blown wide open a world that can be very isolating for families and their children bringing hope, friendship and collaboration through connection.”


Tinley’s story

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SBSK

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Tinley and her brother David are best friends

One of the joys of Chris’s job is interviewing siblings who see far beyond any disability in their family.

“When you listen to them communicate about one another it’s just so honest and pure,” Chris says. “They just see the facts, they don’t see all the extra stuff we add in.”

Tinley, six, has Apert syndrome, a condition that affects the skull, and she is sometimes teased by other children.

Her brother, who she calls “My David”, protects her from bullies and in their video, Chris asks David what makes his sister special.

“That she plays with me,” David says, his face lighting up.

Another video shows Ethan, who has autism, and his sister Leya.

“If we have patience and love that’s all that matters,” she says.

Chris hopes his videos are a valuable resource for parents.

“If you’re a parent struggling with a new diagnosis, this will connect you to other parents around the world and to other individuals with the same diagnosis as your child and that takes away the fear,” he adds.

Chris receives thousands of requests daily from people around the world asking for themselves or someone close to them to be interviewed.

“Parents relish the opportunity to spread awareness about their child.”


‘High five’

Chris starts his interviews asking “What’s something special about you?” or “What do you want the world to know about you?”

“I treat everybody with respect, I am extremely positive, and I go into each interaction with the assumption that the person can understand me and they’re capable of communicating,” he explains.

Some children use assistive technology to speak and others communicate using body language.

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SBSK

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Kadi and her sister Abbey are the only known fraternal twins to both be diagnosed with Emanuel syndrome

“When I make a new friend, I give them a high five,” Chris says.

“Everyone communicates on a different level. If a child is non-verbal and I only use words, they might get frustrated because they can’t reciprocate that conversation.

“I once interviewed a child who wouldn’t stop tapping his chair while I was talking to him. I stopped verbalising and also tapped on the chair.

“He then grabbed my hand, turned around and smiled at me because I communicated with him on his level.”

Among the millions of comments on his videos, thousands of viewers say they have been brought to tears.

“Some of the stories that the individuals tell can be upsetting and I make it a point to let them be told fully,” Chris says.

“Some of what these people go through is heart-wrenching and we want the world to see that. We want others to know that this is a neglected portion of our society and we can serve them so much better.”


Hayden’s story

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SBSK

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Hayden with his mother

When Hayden had a brain bleed and a stroke, doctors told his mother that he would not feel, eat, think, breathe or hear.

Chris tells Hayden, now five, what he thinks he and his family should have heard after his birth.

“You are going to have a profound impact in this world,” he says. “You’re going to spread more love and joy than any doctor or professional could ever comprehend.

“The world is going to be a better place because you were in it. I’m really glad a guy as great as you exists in the world.”

The post has nearly 8,000 comments.

One mother sent in a photo of her daughter with the words: “Eighteen years ago they told us our daughter would never sit, stand, walk or have any ‘real quality’ of life. Today she is a senior in high school.”


‘Persecuted for being different’

Chris insists that children with special education needs are persecuted for being different.

“One of the children I interviewed got punched in the eye by a bully because he communicates in a different way.

“Part of our platform is to find a solution and help parents educate their children that some people may be different but they still have so much to offer and we have to respect them and include them in our society.”

Chris posts three or four interviews each week and funds his non-profit organisation through donations and by attending conferences as a speaker.

“I hope SBSK inspires others to take a moment instead of judging someone. Get to know them, see why they act the way they do. Find out why they think the way they do.”


Samuel’s story

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SBSK

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Chris with Samuel

Samuel was born with a rare form of dwarfism called thanatophoric dysplasia and was not expected to live more than a few months.

His mother Ellen was offered an abortion several times.

“The first time it was actually proposed, the term ‘therapeutic abortion’ was used,” she tells the camera.

“We were told that Samuel would only have a little time after he was born and even if it was just a little time, I wanted it.”

At 11 years old, Samuel has defied all the odds.

“There’s definitely some people out there who think he should just die, that this is a terrible diagnosis that can’t be survivable,” Samuel’s father explains.

“But the point is it can be survivable and there’s a lot of other diagnoses that can be survivable.

“From my point of view, the work you put into it is worth it because you get this beautiful happy child that smiles every day.”

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