Tag Archives: Spina bifida

We knew we had to share our story

Dan and Aimee White, parents of Emily (13) who was born with spina bifida, share their journey as Storyteller for Now is the Time campaign and call for a Minister for Disabled Children and Families.

When you first receive the news that your child will be disabled, you expect to be given all the support needed and a system will be there to guide you, so you won’t feel so isolated and sucker punched. The reality is that this does not happen. There is a void where charities, benefits, support groups and aftercare are not easy to reach.

So, when Scope called last year and asked us to be the face of their new campaign, Now is the Time, and share our story we knew we had to do it. The campaign asked people to sign a petition to call for a Minister for Disabled Children and Families to be in post. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

To speak to camera was cathartic

When the campaign launched last year, we played to our strengths, honesty and passion. The team from Scope visited us all at home to make a film. We sat talking about Emily’s first hours on earth and the lack of support. To speak to camera was cathartic because we wanted the country to know that, as a close community, we love our children dearly, they are perfect, and are contributing.

A teenage girl sat in a wheelchair, punching mats that are being held up by a lady. A man in the background smiling, recording the action on a phone.

My beautiful wife was invited to speak, by Scope, to an audience at the Natural History Museum, once again sharing our story, using our past to change the future. The message of necessity was spreading, with parents backing us on this campaign.

Our community was uniting

The online petition soon started to gather numbers, and we relentlessly and without social media mercy asked the people to sign and share. Old friends such as Matthew Wright of Talk Radio and more gave us the opportunity to take it to the masses. However, the real stars of the campaign were simply parents like us, beautiful people who have been there for us and vice versa. Our community was uniting, wanting, and demanding.

A Minister is needed to help support new parents and young disabled children everywhere. Someone would be there to link together all the hidden support. To make it easier to access information, to make services prominent and be a voice for families.

If this minister had been working in Government twelve years ago, the early days of our family life would have been different. We could have concentrated on parenting rather than thinking society had shut us out.

The message is being heard

We, as a family and with Scope have travelled and talked countrywide to all who would listen. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

Sharing our story for this campaign has had an impact. Over the last few months the Government has added several new ministers to the cabinet, for new, socially minded causes. It seems the message of supporting people through difficult, avoidable times in their lives is apparently being heard within Westminster. Surely, logically, our representative would be next.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

This Dad turned his disabled daughter into a comic book hero

Dan White is the author of the brilliant Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower.

In this blog Dan tells us how his daughter Emily was disappointed to find that she there weren’t any superheros that looked like her – so he decided to make his own!

“Born to be different. Born to save the world”

My name is Dan and I am an artist with a beautiful, talented daughter called Emily, who I adore. We are both proud to be part of an incredible community of people.

Emily was born with Spina Bifida and Hydrocephalus. This is a condition where the spine does not develop properly, leaving gaps in the spinal cord. When she was younger she was a very impressive bum-shuffler! But around five years ago, we bought Emily her first wheelchair. She loves exploring the world around her, and in her new wheelchair she could introduce herself to all sorts of new exciting things.

Like so many other incredible kids, Emily is blessed with endless amount of curiosity. She is a complete book-worm and absolutely loves learning through books, comics, films and music.

“Something had to change”

Unfortunately, this wonderful curiosity often gave way to frustration, annoyance and bewilderment. Emily always wanted to find characters, icons and images that she could relate to. However, very few made her feel accepted and included. Speaking to other kids, it became clear that they often felt the same.

Soon it became obvious to me that something had to change. I started gnawing on my pencil and, very soon, the ideas started flowing.

Just like Emily I love comics, and I have always enjoyed drawing. Before long I had sharpened my pencil and started developing a new comic that all children would enjoy. I soon realised that it had be about what all children aspire to be: Superheroes!

It is easy to underestimate children. But they are so much more imaginative, accepting and inclusive than adults. This is why I designed my comic for all kids. Because they will be responsible for a future in which people are not discriminated against or side-lined.

Meet the superheroes

With Emily’s help I created a whole world of diverse, unique and accessible heroes. All our heroes are dynamic team-players who use their impairment as their greatest superpower. After a lot of deliberation, we decided to call the comic The Department of Ability.

Several of the characters designed for Department of Ability comic strip
Meet the characters from Department of Ability comic strip

Among the first people to see the images were the charities on Facebook. Strongbones, a  relatively young charity, was the first to respond with real enthusiasm, and gave me the support and backing I needed. They are still very involved with the growth and global adventures of the Department of Ability.

Taking over the world

As soon as we started we had big hopes in the comic/cartoon world. It wasn’t long before our superheroes were taking social media by storm, with just a quick click and a paste on my PC.

Soon after designing the characters I gave up my day-job to become a full-time artist so that the Department of Ability could keep growing. The characters became more and more popular, from Australia, through India, to America. It is clear that Emily’s vision and insight have struck a chord with people all over the world.

It’s a Marvel!

At this point we knew everyone loved the characters, but we still had to design and produce the comic. I knew this would be a 24-hour job, but with the help of a literary agent (a real life wonder woman), it started taking shape.

She even showed the drawings to Stan Lee of Marvel, one of the most influential, brilliant and creative figures in the whole industry. He loved the idea, and now we are looking to work with him. I couldn’t believe it. It is one of my childhood fantasies realized.

The disabled community is a hub of amazing talent, from artists to dancers, to film makers to musicians. It is time they were all able to share and showcase their brilliance.

To infinity and beyond

Right now it couldn’t be a more exciting time for the comic. Strongbones threw an enormous party for us at Hamleys in June and The Guardian broke the news of Stan’s possible involvement. Since then Emily and I have appeared on The Saturday Show, CBBC Newsround, ITV Lunchtime News, and BBC Radio. There has even been some film interest from overseas and discussions with Merlin entertainment. I might even be working with one of the world’s leading comic book writers to finish the first adventure.

I could never have imagined our idea and vision would appeal to so many people. But it seems attitudes and prejudices are finally changing. Inclusion is coming!

Or, in the words of the Department of Ability: Born to be different, born to save the world.

Visit the Department of Ability website to read the comic strips. Alternatively, you can find out more on Facebook and on Twitter.

Want to see more characters disabled children can identify with? We would love to hear your thoughts. Leave a comment below to share your ideas.

How to talk to kids about disability (and Voldemort)

Would we reprimand our child for pointing out a woman who has blonde hair? Probably not, because it’s OK to have blonde hair. So what are we telling our kids when we reprimand them for pointing out a person using a wheelchair or a person who is blind, asks Mary Evelyn Smith?

When my son was a baby, I took him to our local toy store. The place was almost empty, but as we rounded the corner, we bumped into a woman and her husband. They leaned over and looked at my son as we passed. He giggled. They waved. They said how cute he was. It was nice.

But near the end of the aisle, we passed the woman’s son — an eight-year-old boy. The kid glanced over at my stroller and I saw a look of confusion flit across his face. His jaw dropped. He looked perplexed and the slightest bit nervous. He called to his mother standing a few feet away, pointed at my son and said with curiosity, “What IS that?”

Toddler in a wheelchairBecause my son has spina bifida and, at the time, he breathed with the help of a trach (which, if you’re not used to seeing it, can be a bit surprising).

I looked behind me and watched his mother’s eyes widen with embarrassment as her face turned stop-sign red. She glared at her son, took him by the arm and mouthed angrily into his ear: “Don’t. Say. Anything.” And I felt terrible — like my little boy was shameful somehow. Because he has a disability, and disabilities should not be spoken of.

… kind of like Voldemort

Can we talk about Voldemort for a second? He is one bad dude. He’s so freaking scary that if you even speak his name, all manner of horrors could rain down upon you. The kids at Hogwarts knew better than to mess with that can of worms (except for Harry Potter, since he’s brave and also a hero, no biggie) because, just like we teach our kids in the real world, it’s best not to talk about bad things.

Bad things should be kept quiet

But disability isn’t bad. And I’m sure that the woman at the store didn’t think my son was a menace of Voldemort proportions. Still, pointing out our differences makes us uncomfortable. We don’t know what we’re allowed or not allowed to say about disability. So we prefer to say nothing.

The problem is that our children are still learning the rules. They see difference in the world and they ask questions. They see difference and they speak it. They see difference and they point their fingers. All we can do is react. And our reactions send a message to our children. Our reactions tell them how to feel about the differences they see.

Here’s my advice if your child is the finger pointer:

  • Stay calm. I know it’s embarrassing. I know it’s awkward. But seeing you stressed over the mention of someone’s disability will make your child feel that they’ve done something bad by bringing it up. Know that it’s normal for kids to ask questions or even point and stare a bit. Parents like me are used to it.
  • Be open to discussion. No need to shush or remove your child from the situation. Try to calmly answer their questions and remember that “I don’t know” is an acceptable answer. When the boy at the toy store asked his mother what was going on with my son, I wish she would have felt comfortable saying, “Would you mind if my son asked you a question about your baby?” Like all parents, people who have children with special needs like talking about their kids, and most of us enjoy raising awareness too.
  • Lead by example. Do your best to use positive language when talking to your kids about differences — and not just disability. Try to avoid words that imply disability is sad or bad like “poor thing” or “something is wrong with him.” If your child says something hurtful like, “That person is funny looking,” you can talk to them about using polite words when they see someone who is different.

If your child is being pointed at

  • Stay calm. Remember that your reaction sends a message too. Little good will come from lashing out or reprimanding a stranger’s child. The last thing we want is for children to stay away from our kids for fear of saying or doing the wrong thing.
  • Be open to discussion. Answer questions if you feel comfortable. If not, redirect the conversation to what your children might have in common: “Do you like video games? Daniel Tiger? My son does too!”
  • Consider the intentions more than the words. Most of us have been in the special needs community long enough to know what words are OK and what words not OK to use when discussing disability. Remember that most people do not live in the same world of disability parenting, but their intentions are good.
  • Try to remember what YOU were like before your child was diagnosed. Try to remember how long it took you to learn and adjust. Try to assume good intentions. I dislike when someone asks “What’s wrong with your son?” or calls him a “poor thing,” but shutting them down will only end what could have been an eye-opening conversation.

Above all, remember that we’re in this together. Whether your child has a disability or your child does not, we’ve got to give each other some grace, take a deep breath and let go of our fears.

Be brave. Be a hero.

What would Harry Potter do?

Mary's son, with the text: Expelliarmus!

Mary Evelyn Smith is a children’s librarian, writer and blogger at What do you do dear? 

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