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Why we have to create more disabled characters in children's fiction

Susie Day -Tuesday 8 December 2015 07.00 EST

  Lola la Loba (Lola the Wolf) by Almudena Taboada and Ulises Wensell

Lola la Loba (Lola the Wolf) by Almudena Taboada and Ulises Wensell

  Susie Day: the idea that young people with disabilities might be entitled to find themselves in fiction - not to teach able children to be better people, not to be cured, not to be “issues” but to cast spells and time-travel and worry if they’re wearing uncool trainers - sadly still seems a challenge for our industry. Photograph: PR

Susie Day: the idea that young people with disabilities might be entitled to find themselves in fiction - not to teach able children to be better people, not to be cured, not to be “issues” but to cast spells and time-travel and worry if they’re wearing uncool trainers - sadly still seems a challenge for our industry. Photograph: PR

Picture if you will a nice state primary school, in 1980s south Wales. We had an oak tree. One time a man drove a Sinclair C5 round the playground to show us The Future. We had plenty of undiagnosed dyslexia and NHS specs (frame choices: brown, blue, pink, clear; all pure Jarvis Cocker), but no greater challenges were allowed to enter - so we never thought about them. We didn’t call it segregation. If it had been pointed out, I’m sure I’d have thought it wasn’t anything personal. My experience of people with disabilities was, like most mainstream-schooled kids of that time, Joey Deacon on Blue Peter.

If you remember him too, you’ll know the playground nickname “Joey” was not one of endearment. I clench all over just remembering: pulled faces in the playground, sneers, disgust. Kids can be cruel.

The fiction I read then was kinder - uncomfortably so. Books for eight to 12s are often about growing up, self-discovery, overcoming a challenge. In classic children’s fiction, physical disability tends to be co-opted not only as a cautionary tale, but a completely useless one where it turns out you’ll be ok in the end - so long as you’re nice, or you try hard. The Secret Garden’s invalid Colin apparently only needs a bit of fresh air and gardening to magically regain his health. In What Katy Did, Katy’s spinal injury is a lesson in patience and goodness; once she’s learned it, she walks again.

Jacqueline Wilson on What Katy Did by Susan Coolidge: 'It's a wonderful book'

Skip ahead in time to a modern state school and things have changed. When I trained as a primary teacher (before I realised I was better at making up imaginary kids than explaining what a rhombus is to real ones), I met kids with learning disabilities, visual impairments, communication disorders. I worked very briefly with a boy with complex needs who used a motorised chair and breathing apparatus. On Sports Day. I was afraid - of saying or doing something wrong, of hurting him, and, most pathetically, of looking like a bad able person who didn’t know how to deal with his disability.

My nice oak-tree school hadn’t educated me at all. But his peers modelled how I should act without a second thought; he was a person, with a voice, with opinions, one of them. Including him, with consideration for what he wanted to be involved in, was an automatic part of their school day (clearly developed with thoughtful support from the class teacher). Kids can be brilliant, too.

Katy by Jacqueline Wilson – review

Writer on wheels: ‘Everything that Jacqueline Wilson includes about disability, is so, so true’

I’d love to say that children’s fiction has taken a similar leap since the days of the Sinclair C5, but I can’t. The #WeNeedDiverseBooks campaign continues to go from strength to strength, and sites like Disability in Kidlit , and Cindy Pon and Malinda Lo’s Diversity in YA are fantastic resources for authors and readers alike - but these campaigning sites exist for good reason.

There are happy exceptions: Julia Golding’s Young Knights adventure fantasy series features a wheelchair user; Jacqueline Wilson’s wonderful Katy is a retelling of What Katy Did, with a more honest conclusion (you can read a review of Katy by teen site member Writer on Wheels here) But the idea that young people with disabilities (congenital or acquired, physical and/or mental, mild to severe, single or overlapping) might be entitled to find themselves in fiction - not to teach able children to be better people, not to be cured, not to be “issues” but to cast spells and time-travel and worry if they’re wearing uncool trainers - sadly still seems a challenge for our industry. Adults can be cruel, too.

And we need to do better.

I’d already begun writing Pea’s Book of Holidays when I first heard of hemiplegia, via a chance comment on Twitter. A search took me toHemiHelp, the UK charity for children, young people and families affected by hemiplegia. There I read:

Hemiplegia is a neurological condition that affects children and adults in a similar way to a stroke. It is caused by injury to the brain and it results in a varying degree of weakness and lack of control on one side of the body. It is not just physical mobility that is affected. In fact, most children have additional diagnoses such as epilepsy, visual impairment, speech difficulties, perceptual problems, learning difficulties, emotional and behavioural problems. Childhood hemiplegia is a relatively common condition, affecting up to one child in 1,000.

I thought: that’s a lot of kids for something I’d never heard of. Then I thought: I can do something about that.

That’s when the fear kicked in. The idea for Pea’s Book of Holidays was already set: a funny family outdoorsy Famous-Five-ish adventure, which would gently unpick some of the murkier side of Blyton along the way. Could I take a kid with hemiplegia camping? I was already talking about race and prejudice in my book full of non-traditional families: was this going to make it feel like some sort of diversity training manual instead of a fun mystery with a dog in it?

And then the big questions. Do I have the right? What if I get my representation wrong? Is it safer not to try?

Of course it’s safer not to try. It’s safer not to write anything at all – but then we’d have no books. I asked Hemihelp’s Facebook group for advice, and was overwhelmed by their positive support for the book. Hemihelp put me in touch with two consultants, Joanna Sholem and Rosalyn Burbidge, who shared their own personal and family experiences, and read my embarrassingly underinformed first drafts with a kind but firm editorial eye.

Why I want more disabled characters in books

The result?

Sed purus sem, scelerisque ac rhoncus eget, porttitor nec odio. Lorem ipsum dolor sit amet.
— Pablo

Ryan Munro is a Scottish ghost-hunter, aged 12. He’s on holiday with his joke-obsessed little bro Troy and Max, their dad; they live with sceptic Mum but this summer it’s Max’s turn. Ryan desperately wants to find a ghost in Corfe Castle to make Max proud - and to prove to those weird girls at the tea rooms that ghosts are definitelyreal.

Ryan has hemiplegia - which means he wears a splint on his arm and leg, Troy has to help him with some practical tasks, he’s learned to play his Xbox one-handed, he gets tired and snappy, and when he says he wants to prove himself to his Dad he really, really means it. His impairments are part of him and affect every day of his life - but they are not who he is.

Does he represent all young people with hemiplegia? Of course not. He doesn’t represent all Scottish 12-year-olds with divorced parents either. But he’s there, not to learn a lesson or teach one, but to be part of an adventure.

Advice for authors:

  • Don’t second-guess yourself out of writing inclusively. Writing is already hard. And here’s this other thing that’s also hard. Why make the effort? If you have no investment in making your fictional world honest, authentic and meaningful to its readership, then... ok. You sound super-fun. But perhaps children’s fiction isn’t for you.
  • Do the work. “Nothing about us without us.” A few quick Googles aren’t going to cut it; you need real experiences as well as facts. Ask the stupid questions. Share your work. Listen. Edit.
  • Accept that you will fail. However hard you work, and however many well-informed people read over your efforts, your work can’t represent everyone. I sometimes get asked to check a manuscript’s LGBTQ content, as if I can stamp it with an official gay seal of approval. Guaranteed to offend no one! 100% stereotype-free! After all, The Curious Incident of the Dog in the Night-Time is lauded by many as a remarkable insight into life with Asperger’s syndrome; others feel misrepresented by it. If yours is the first time a reader has met a fictional someone “like them”, it’s almost inevitable that you will disappoint.
  • Do it anyway. Because we need more of these narratives, not fewer. Not one single story, but many.

Susie Day’s Pea’s Book of Holidays is available from the Guardian bookshop. You can find out more about hemiplegia on the HemiHelp website.

 

This gallery showcases some of the wonderful diverse books about loads of different kinds of disabilities being published in other countries. We would love to see them on our bookshelves and hope we’ll be able to do that one day

This gallery is part of our disability diversity day on Guardian children’s books, check out our homepage

Survey for Women with Cerebral Palsy - Katie Hanley, LMSW

The Weinberg Family Cerebral Palsy Center at Columbia University is conducting a study to identify existing unmet medical needs for women over 18 years of age with a diagnosis of cerebral palsy. The particular focus of this study is gynecological, reproductive and breast health care. The survey can be completed by an adult female with cerebral palsy or a parent, friend, caregiver, spouse/partner. This survey is part of a two-year project designed to not only determine what your needs or the patient’s needs are, but also to create a program to meet these needs. Designed according to your survey responses, this program will take place at Columbia University Medical Center. Participation in this survey is completely voluntary, each question is optional, and all information will remain confidential. Finally, if you choose to add your contact information, we will contact you to conduct an interview to further understand what your needs or the patient’s needs are beyond what this simple survey can capture.  Feel free to contact Rachel Jordan at rj2457@cumc.columbia.edu with any questions you may have.

 

https://cumc.co1.qualtrics.com/SE/?SID=SV_0rd5wwqc6zXyzoV

SAY GOODBYE TO WHEELCHAIR RAMPS! STUDENTS CREATE A WHEELCHAIR THAT CLIMBS STAIRS!

June 10, 2015

By Mike Epps

Wheelchair bound people obviously have it rough. Cities and neighborhoods are not built for those without the use of their legs. Sure, there are places that will have the occasional staircase accompanied by a ramp, but getting up those ramps with nothing but your arm strength is difficult. It is for this reason, that most people in wheelchairs usually need somebody to go with them wherever they go. A new wheelchair design might change that.

The Swiss Federal Institute of Technology and the Zurich University of the Arts tasked last year’s undergraduate students with an assignment to build a functional product they could sell using all the knowledge they had at hand.

Ten students originally came together to create a machine that could smoothly carry a camera up a flight of stairs. This concept quickly evolved into a wheelchair that could climb stairs. They came up with several different versions of this wheelchair design.

One was designed to have very large wheels that could climb stairs (the larger the wheels, the more a set of stairs became like a ramp). This design made for a pretty uncomfortable ride as each step climbed resulted in a slight jolt for the driver.

 

(Source: Scalevo)

The second idea was drawn to have four rubber tracks on the side of the wheelchair. The rubber tracks would be tilted down to climb stairs, and move up to drive around. However, the four rubber tracks would be too heavy and complex to design.

 

(Source: Scalevo)

They eventually decided to combine both designs and what they created is incredible. While on flat ground, the wheelchair will balance on two wheels like a Segway. To climb stairs, two rubber tracks extend from the bottom and ride up a set of stairs like a tank. There is also a set of small wheels in the back for stability when the chair goes from flat ground to stairs or vice versa. With the two large wheels, the set of small wheels, and the bottom tracks, this cool creation can also raise the individual seated up higher.

Originally, the project (now titled Scalevo was just to have a proof of concept, but now these young engineers intend to bring it to market some time in the near future. They even added a few features like a touchscreen navigational pad and even a backup camera and lights.

 THE FINAL DESIGN

THE FINAL DESIGN

Google Putting Up Millions For Disability Initiative - By SHAUN HEASLEY Disability Scoop

 By SHAUN HEASLEY- Disability Scoop

May 27, 2015

  Google announced this week that it will provide millions of dollars in funding to groups that are using technology to change the lives of people with disabilities. (Patrick Tehan/Bay Area News Group/TNS)

Google announced this week that it will provide millions of dollars in funding to groups that are using technology to change the lives of people with disabilities. (Patrick Tehan/Bay Area News Group/TNS)

Google is looking to address the needs of a billion people with disabilities worldwide and it’s putting big bucks behind the effort.

The Internet search giant said this week that Google.org — the company’s charitable arm — is offering up $20 million to nonprofits “using emerging technologies to increase independence for people living with disabilities.”

As part of the initiative dubbed “The Google Impact Challenge: Disabilities,” the company is also asking people with disabilities to suggest problems that they would like to see addressed with the grant money.

Google has already committed funding to two groups — the Enable Community Foundation which links people needing prosthetics with volunteers who use 3D printers to create them at no cost and World Wide Hearing which will use the funds to develop a low-cost kit to detect hearing loss using smartphone technology.

“The Google Impact Challenge: Disabilities will seek out nonprofits and help them find new solutions to some serious ‘what ifs’ for the disabled community. We will choose the best of these ideas and help them to scale by investing in their vision, by rallying our people and by mobilizing our resources in support of their missions,” Jacquelline Fuller, director of Google.org, said in a blog post.

Alongside the monetary commitment, Google said it will work to ensure accessibility of its own products and add new offerings that benefit people with disabilities. The company cited its work developing self-driving cars as well as Liftware, a utensil designed to help people with hand tremors eat more easily, as examples of its existing work in this space.

“Historically, people living with disabilities have relied on technologies that were often bulky, expensive and limited to assisting with one or two specific tasks. But that’s beginning to change,” Fuller wrote. “Together, we can create a better world, faster.”

Advisers for the new project include autism self-advocate Temple Grandin and Catalina Devandas Aguilar, the United Nations’ special rapporteur on the rights of persons with disabilities.


A Mother's Day Wish for Special Needs Moms 

Happy Mother's Day amazing mamas! Today we celebrate YOU. You have made a profound difference in the life of a child.

Mary Hickey 

Mother, family life coach, writer

What I WISH I could give all the special needs mamas for Mother's Day:

  • An advocate to help you obtain an accommodations list and service delivery grid filled with all the help you wish for your child.
  • A personal insurance representative to obtain coverage for the medications and services your child needs.
  • A secretary to take the unsettling phone calls from school.
  • A private chauffeur to and from therapy and doctor appointments.
  • An OT to create a sensory gym in your basement.
  • A SLP to help your child tell you what he needs throughout the day.
  • A professional organizer to file the pounds of paperwork.
  • A private tutor who handles homework meltdowns.
  • A housekeeper who knows what things to pick up and what carefully crafted creations to LEAVE AS IS.
  • A private chef who know that brown marks and green herbs are an absolute NO.
  • A personal stylist who creates a tagless and sensory friendly wardrobe for your child.

What I CAN give all the special needs mamas for Mother's Day:

  • The recognition and admiration that you, my friend, are ALL these things. You are all of this AND the most important thing of all, love.
  • So this Mother's Day I give you permission to be proud of all you are.
  • Permission to say no.
  • Permission to feel -- to laugh, to cry. To not hold it together for anyone.
  • Permission to wear a superhero cape ALL DAY.
  • Permission to cut yourself some slack.
  • Permission to let five other people attempt to do your one job.
  • Permission to rest.
  • Permission to stop feeling guilty that you haven't done enough, because you have done more than you could imagine.

Happy Mother's Day amazing mamas! Today we celebrate YOU. You have made a profound difference in the life of a child.

Has the Disability Rights Movement Stagnated? | Sarah Blahovec

Let's face it: Disability issues do not receive as much mainstream attention as other social justice issues.

In their own ways, other social justice movements are "hot topics" in the news these days, although often controversially. Feminism receives significant positive attention when Emma Watson talks about the HeforShe Campaign, and negative attention when people dispute its relevance and accuracy in today's society. Newsworthy topics regarding rights for racial minorities stem from the immigration debate, to Ferguson, to a remembrance of the march in Selma that drew the participation of the president. LGBT rights continue to be covered as more and more states achieve marriage equality.

Social justice is never a competition, and each group has its own unique challenges that should receive attention, so the recognition that these movements receive is extremely justified. But why don't disability stories generate this kind of attention within mainstream society? The stories are there, ranging from heartwarming tales to major issues of discrimination and violence towards people with disabilities. PwDs are not significantly more privileged than any other minority. According to the World Health Organization, children with disabilities and adults with mental health conditions are four times more likely to be the victims of violence than their peers without disabilities. Forty percent of homeless persons in the United States have disabilities. A recent study in the UK found that 77 percent of recent graduates are afraid of disclosing a disability to their employer for fear of discrimination. Worldwide, barriers to inclusivity for people with disabilities continue to be significant. While various organizations work tirelessly to promote equal rights, disability rights just don't seem to be captivating the public in the same way. Even on The Huffington Post, while specific sections exist for Women's, LGBT, Latino and Black Voices, no dedicated news section exists for Disability Voices.

Why don't disability issues generate mainstream attention? There could be a number of factors that contribute to its lack of momentum. First, there may be a greater perception that people with disabilities are less productive and able members of the public than people without disabilities. The fear of discrimination that was mentioned in the UK study was generated by the fact that some employers believe employees with disabilities will not be able to keep up with their job duties. Many people, including those who are not blatantly biased against people with disabilities, may believe that people with disabilities are less capable of taking care of themselves and carrying out major responsibilities. Meanwhile, the perception that women, racial minorities, and LGBT individuals are less capable is more isolated to those who are solidly prejudiced against these groups, and the general population is more accepting of the idea that these groups are fully capable of living and working at a normal level of ability (still, microagressions and societal conditioning of prejudice against these groups exist and must be challenged).

Other issues that may affect the disability rights movement's momentum are barriers to accessibility and to participation. Because disability is a medical issue, many individuals with disabilities may not be able to fully participate because they are too busy overcoming their medical barriers to devote energy to disability rights. Many people with chronic conditions are familiar with "the spoon theory," which explains that individuals with chronic conditions have to make tradeoffs and negotiate where using their limited energy (represented in the story as spoons) is important. People who are currently going through difficult medical conditions, who may be facing complications or relapses, must devote their attention to their immediate needs, including work, family and their own medical needs, and may not be able to take up the responsibility of advocacy. It is also more difficult for people to congregate and advocate when they face barriers including accessibility needs even as simple as finding a wheelchair-accessible meeting place, or disseminating informational videos that include closed captioning.

Finally, fear of increased discrimination may be one of the most significant barriers to disability rights. Unlike gender and race, disability in many cases can still be hidden. A large number of PwDs cannot be visibly identified as having a disability. People with invisible disabilities are told to hide their disabilities and to avoid disclosing anything about their medical situation, as they have a better chance of being treated "normally" if they do not let on to their conditions. This incentivizes hiding disability status, and so many people are afraid of speaking up because they feel that they will fare better and experience less discrimination. This is a fruitless action, as the Equal Employment Opportunity Commission found that the most frequent disability discrimination complaints actually came from people with invisible disabilities. Even people who are well-established in their careers do not talk about how their disability impacted their growth. There is a shocking shortage of mentors with disabilities in every field. Even those who have achieved greatly still seem to fear that they will be the subject of discrimination if they start to discuss their challenges.

Of course, not all PwDs have an invisible disability, and those who can be visibly identified are the subject of just as much or more discrimination than their invisibly disabled peers, especially early in the hiring process. The government places a special emphasis on hiring persons with "targeted disabilities," which generally tend to be more noticeable conditions including paralysis, blindness, deafness, and intellectual disabilities. Its reasoning behind this policy is that these individuals face the greatest discrimination in employment and have a harder time being placed in a job. However, even when disability is visible, many individuals are told to avoid discussing it for the purpose of minimizing its perceived impact on their lives.

The disability rights movement needs a jolt of energy. It deserves the recognition of the public. Significant barriers exist within and outside of the movement due to the stigma of disability, but people can overcome them by educating themselves and recognizing that this discrimination is pervasive in society. Most importantly, individuals without disabilities should remember that they could become part of this community at any time, and that generating discussion on disability topics could not only benefit the millions of people with disabilities, but themselves and their loved ones as well.