Emily Prior, an 11-year old model with cerebral palsy, is changing the face of advertising. “I just keep showing people how disability CAN be included”.
“I am trying to make sure that people with disabilities are seen in advertising, TV and film and that everyone is being included. I like that people can see what my disability looks like because I am proud of my disability.”
This is one remarkable girl on a mission.
Emily lives in Australia and by the time she was eight years old, she was acutely aware of the a lack of representation of people with disabilities in mainstream media, especially advertising. She definitely did not see other children with cerebral palsy like her in catalogues or magazines.
“She obviously recognised the very exclusionary messages in advertising and this was clearly having a significant effect on her self-esteem, her sense of belonging and her identity,” explains Emily’s mum Jen.
“She didn’t see herself being represented, she didn’t see disability being represented, she only saw that the world around her was telling her she didn’t belong.”
When her mum asked her if she wanted to change this, Emily’s answer was a resounding yes.
“People have disabilities. It is who we are. People with disabilities do the same things as everyone else. They go shopping, they play sports, they go to school, the beach but you wouldn’t know that if you looked at catalogues or on TV or movies. We all need to be included,” says Emily.
No stranger to being in front of a camera, Emily had previously been the face of the West Australian Charity Fundraiser Telethon and had been involved in other disability-specific marketing.
However, getting started on her dream of being a model was not an easy process.
“Unfortunately the attitudes and unconscious bias towards disability means that Emily (and other disabled models) are often denied opportunities and access to participate in the advertising industry,” says Jen.
Emily and her team put a lot of work into building a portfolio via Instagram in order to showcase what disability could look like in mainstream media. This was an intensive process that involved learning how to set up photo shoots, finding locations, styling and make-up.
“We found mentors to help guide us and we just started,” Jen continues.
We used our voice, along with our photographs to tell the story – the more you tell your story, the more people start to listen.”
They started approaching Australian brands encouraging them to include disability in their advertising. After entering many Brand Rep Searches, Emily was finally taken on by Australian brand Poppy and Flynn.
Around this time Emily also became an Ambassador for Starting with Julius, a project promoting inclusion in Australian advertising and media. Through them she connected with Australian brands such as Rock Your Baby and Alex & Ant.
Emily’s mission gains momentum
When Emily won a competition through Betts Kids Shoes, her mum decided to capitalise on the opportunity and ask if they would consider being more inclusive in their advertising.
To her surprise they embraced the idea.
Emily went on to feature in their advertising campaigns for two years.
One of Emily’s proudest achievements is becoming Target Australia’s first disabled cover girl. She has also appeared in three more catalogues as well as front of store and in store advertising.
“This had a profound effect on Emily,” says Jen. “Not only did she see herself being represented, but she received so many emails and messages from other children and their parents who had seen the advertising.
“For their children to see a child just like them gave them a sense of belonging, they were able to recognise and see themselves in mainstream advertising.”
To date Emily has worked with around 25 brands, as well as disability related organisations and other companies. She works events, appears in catalogues, look-books, in-store advertising and has appeared on TV, radio commercials and podcasts.
When inclusion is the norm
Of course, there are still barriers to overcome.
Living in Perth in Western Australia can make it difficult, as travel is usually required to attend castings. However, social media helps overcome this geographical obstacle, allowing Emily to connect with people and brands all over the world.
But there remains a long way to go until inclusion of disability in advertising is the norm.
“We continue to write numerous emails and make contact with brands, casting agents and organisations who sometimes still ignore us,” says Jen.
“Deciding not to reflect people with disability in advertising and mainstream media continues to reinforce those very attitudinal barriers that stand in the way of people with disability participating with the same opportunity and without discrimination.
“Advertising needs to reflect the world in which we live, and Emily needs to see herself and kids like her being represented. When brands are inclusive they are sending messages to their customers, including disabled customers and others who have strong connections to someone with a disability, that they recognise and value diversity, inclusion and human rights.”
Meet Farida Bedwei: Superhero and Software Engineer
Farida Bedwei may have Cerebral Palsy (CP) but she has never let it define what she is, and is not, capable of achieving.
The highly successful entrepreneur and software engineer has brought hope to people living with CP and their families through her powerful fictional protagonists, Karmzah and Zaara.
Karmzah is the phenomenal female comic super hero with CP that Farida launched on World CP Day in 2018.
“I created Karmzah because I found there was no representation of me – a female with Cerebral Palsy – in the world of superheroes,” says Farida.
“And there are millions of little girls and boys who deserve to read a comic or watch an animation and see someone they can relate to.”
Farida partnered with Leti Arts – a Ghanaian digital comic production company – to bring Karmzah to life. The character was so well received that people all over the World quickly sprung to action in the Twitter-sphere, spreading the word that the feisty new superhero had arrived.
“It got tweeted all over the World by various CP and other disability groups, as well as individuals with and without disabilities who were tickled by the concept,” she says.
Karmzah is not the only character with CP that Farida has given life
In 2010, Farida published Definition of a Miracle, a children’s book starring a young African girl with CP named Zaara.
“The story about Zaara is a bit more personal for me, I went through similar experiences growing up here in Ghana,” Farida says.
“Disability is still largely misunderstood and a bit of a taboo in various parts of Ghana and other African countries,” says Farida.
“I wrote Definition of a Miracle to attempt to educate people about disability from the perspective of someone living with it,” she says.
Farida tells us that the impact of publishing this book was huge, hurtling her into the limelight.
“So many mothers of children with CP and other disabilities reached out, telling me I had given them hope,” she says.
On the journey to becoming a Software Engineer
But well before she was creating fictional characters to educate the World about living with CP, Farida was a successful software engineer and entrepreneur.
“My path was defined by my mother’s ingenuity rather than by medical professionals who probably would have used textbook references to determine my capabilities, thus limiting me,” she says.
Farida was home-schooled and learned to read fast because of the one-on-one attention from her mother.
“Growing up, I knew I had limitations, but I was taught to try and surmount them,” says Farida.
“From an early age my mum told me to remove the words “I can’t” from my vocabulary and replace them with “I’ll try”,” says Farida.
“That was so ingrained in my subconscious that I never thought anything was beyond me,” she says.
“I think when you have CP or any other disability, you learn to be resilient and adaptive to whatever situation you find yourself in.”
At age 12, she entered mainstream educated and attended a junior high school for three years until the terrain of Ghana’s high schools – unfriendly for people with disabilities – prevented her from continuing.
Instead, she completed a Diploma in Information Systems and started working part-time while completing a higher diploma.
“Then I got my dream job as a junior programmer in the leading software development company of the time – that was the start of my career,” says Farida.
“As much as possible, I did not let CP limit me. I played to my strengths. From an early age it was determined that I had above average intelligence and a knack for computers, so I channelled my energies into a career in computing.
“My education was somewhat unconventional because I lived in a country without inclusive schools, but we made it work,” she says.
“At the end of the day, I was educated enough to get an entry-level job in the software industry and from then onwards I learned on the job, completed another diploma and went on to get a Degree in Computer Science.”
Farida recounts that when she started her career, there weren’t many candidates for software development roles.
“I had employers who were willing to look beyond the physical disability and give me an opportunity to prove myself,” she says.
And she certainly went on to prove herself unstoppable.
The entrepreneurial adventure
“I never set out to become an entrepreneur,” Farida declares.
“After working in the software industry for over a decade, I moved on to the micro-banking industry,” she says.
It was while in the micro-banking Industry that Farida built a cloud banking application, drawing on the expert knowledge of her now company co-founder, Derrick Dankyi.
The application – Zigloi – simplified the operations of the institution Farida worked for so much that a phenomenal amount of growth was able to be achieved in a small timeframe.
Then everyone wanted a bite of the cherry.
Their remarkable success put the dynamic duo in hot demand with other micro-banking institutions. So, they started an IT company called Logiciel and began delivering services across the micro-banking industry.
Farida’s advice for young people living with CP
Farida largely attributes her success in life to her mother’s ingenuity and growing up in a developing country where there were inadequate facilities for children with disabilities.
But her magic potion seems to be all in her acceptance of who she is and harnessing her capabilities without focussing on her disabilities.
“Accept and love yourself for who you are,” says Farida.
“Don’t waste your time wishing you didn’t have this condition. Rather, find ways to attain greater heights with your disabilities,” she says.
“Don’t let professionals decide what your capabilities are – discover them yourself.
“Always believe in yourself and if you are a person on faith, always believe in your God.”
You can find copies of Farida’s story book, Definition of a Miracle, on Amazon.
The Karmzah comic is available on Amazon and the Afrocomix app on the Google Play Store.
Last August I flew out to Ghana to meet and train therapists working with children with both cognitive and physical difficulties.
I took with me lots of orthopaedic shoes and splints to hand out, some kindly given by parents of children at the London Centre for Children with Cerebral Palsy and a job lot from a London orthopaedic clinic, sourced by one of our parents.
During my month-long trip I was asked to give a talk on cerebral palsy to parents and staff at the Orthopaedic Training Centre (OTC) in Nsawam, which is just north of the capital Accra.
A label with no explanation
Each sentence I said had to be translated into Twi which meant it was pretty long. But it was wonderful to see a smiling nodding crowd as, for the first time, they saw their child and their lives described in the words of a professional.
They were hearing what cerebral palsy was – this label they had been given for their child with no explanation. They were finding out what this meant for their child, what was going on, why and, most importantly, what they could do to help.
There is a culture of not asking questions of medical professionals here a nurse told me afterwards. She works in a clinic nearby and spends so much time trying to work out what has gone on before. Mothers bring their babies to the clinic having seen a doctor elsewhere, taken medicine from them and given it to their child but they have no idea why, what the medicine was or what it was supposed to do. The information was not offered and they were not supposed to ask.
So I made myself available for questions during and after the talk. It started at 10am and I didn’t finish taking questions until 3 pm – even then I could have stayed later but the Centre was closing!
Sharing my experience of working with children with cerebral palsy in the UK, I think many found it reassuring that frustration is felt everywhere – even in a country with some of the best facilities in the world.
And it is, it really is because we, as professionals and families alike, love these children and fight tooth and nail for them.
But having cerebral palsy is hard, really hard. And I know it’s hard for the families I work with here and in the United Kingdom.
Life as a battle
Whilst living day to day life with all the usual stresses and joys, they also have this battle on their hands every day. A battle to make the world around them see their child, to keep their child healthy, a battle to have the opportunities we can all take for granted and a battle with all the emotions that brings.
In addition, something that few people like to talk about is grief and guilt – two incredibly natural feelings that are often hidden.
Cerebral palsy is caused by a disturbance or damage to a developing brain. So a lot of parents can end up harbouring feelings of grief, grief for what has happened to their child and for the kind of life they wanted for their child. And then guilt for feeling this way, guilt feeling that something could have stopped this. It’s a completely natural feeling, but one that is not justified.
Our natural instinct is to protect children and so when something goes wrong, even when it is completely out of our hands, it is all too easy to look inwards with anger.
I’m not a parent and I therefore cannot imagine what it feels like to have a child or have a child who has complex needs.
I do, however, love the children I work with dearly and, having spoken to many of their parents about this complex subject, I’ve seen that these feelings are very common.
A parent of a disabled child I used to babysit once told me:
“When you plan to have children you envisage your future life and theirs, you imagine typically that they will be with you for around 18 years, they will branch off and live their own independent life, maybe get married and have children of their own and then they will be there for you in your later years.
Our reality is having our child with us at home for the rest of our days, reliant on us for much of their day. I would never have it any other way but, at the same time, this is not how anyone thinks their life is going to go, how their child’s life is going to go. They will never live an independent life and I spend my life terrified of what life holds for them after I’m gone.
Cerebral palsy has taken over all our lives. We don’t live your typical family life and I feel horrendous that I’ve just said that.”
I’d like to stress that I am talking here specifically about children with complex needs as this is my speciality and that is the audience the talk was for. Needs that often include limited mobility, self-care skills, swallowing or communication difficulties. There are many, many individuals with cerebral palsy who live completely independent lives.
In Ghana the socially accepted ideology tells parents that that cerebral palsy or any additional needs are spiritual diseases; they are punishment for wrong-doing, a curse or even spiritual possession.
As wrong as this is, when everyone in your world is telling you this, when you see no one else with disability, when there is zero media representation and some random person (me!) has come over to your country to disagree with everything you’ve ever known, who are you going to believe?
Incredible and moving
The power of having all these parents in one room was so incredible and so moving.
Many of them were on their own – their families including partners had left them after finding out their child, their grandchild or their friend’s child has cerebral palsy. Having someone acknowledge that and having other families with the same concerns around them, which for many had never happened before, was a huge experience.
It was cathartic for everyone to just hear they weren’t alone and I found it humbling to be a part of that. As part of my job I do a lot of staff training. I lecture for Canterbury Christ Church and Greenwich Universities and I advocate wherever possible. But nothing has ever felt as important at that talk.
Stop Press: Good news!
After I got home to London, I received an email letting me know that there’s been a big movement after the talk and, as a result, the Centre is collaborating with the Special Mothers Project, an organisation set up by mothers of children with cerebral palsy, to hold a bigger awareness workshop soon in Accra.
They need a Speech and Language Therapist to help and so asked for my recommendation in finding one and my advice from the United Kingdom!
This is exactly the kind of impact we were aiming for so I am so so pleased for them.
Paediatric Speech and Language Therapist
London Centre for Children with Cerebral Palsy
A majority of the Turkish society is unfamiliar with cerebral palsy (CP). And those who know CP mix it up with mental disorders. It is well-known that once every 8 hours a Turkish baby with CP is born. In other words, 4 out of 1000 Turkish babies have CP. In view of this widespread form of handicap, the low public awareness of CP is both thought-provoking and deplorable.
For almost 50 years, Spastic Children’s Foundation of Turkey has been operating in the fields of people with CP. One of our paramount aims is to create awareness of CP in the society. Thus, we want to enable or facilitate the social inclusion of people with CP.
Our foundation has been pioneering the World CP Day in Turkey since 2012. It was in 2015 that’s we took our first giant step towards familiarizing the Turkish people with the World CP Day by launching a ‘campaign for challenge’. The campaign chiefly intended to convey people the impression that they had CP. That’s why we familiarized them with the two most difficult phases of life for CP: Firstly, people with CP cannot jump and stand up right after the jump. Secondly, most of them have difficulties in speaking fluently. We launched our campaign via popular social media platforms such as Twitter, Facebook or Instagram.
The campaign is composed of four phases. All prospective attendees had to:
1. photograph their jump or videotape their jingle before posting them on the above mentioned social media platforms
2. use the text defined for this campaign
3. invite three of their friends to participate in the campaign
4. claim monetary donations from friends who reject to join the campaign through a text message
We integrated bloggers, social media phenomena and stars into the campaign. Within just two weeks, 2000 people reacted to our invitations. Thousands of people heard of the campaign and CP.
In October 2016 we are going to relaunch our campaign. We want to reach a larger target group. We would be glad if nongovernmental organizations abroad active in the field of CP promote, adopt and implement our campaign. This way, we would reach more people.
We are firmly convinced that our efforts will fast-track the concession of CP rights for all people with CP one day!
Türkiye’de toplum Cerebral Palsy’lileri (CP) tanımıyor. Büyük bir kısmı CP’yi zihinsel engel ile karıştırılıyor. Türkiye’de her 8 saatte bir CP’li bir bebeğin doğduğu biliniyor. Bir başka deyişle Ülkemizde CP’li doğum oranı 4/1000 olarak gerçekleşiyor. Böylesine yaygın bir engel türü olan CP hakkında toplumdaki bilinirlik düzeyi maalesef halen çok düşük. Türkiye Spastik Çocuklar Vakfı olarak 50 yıla yakın zamandır CP ile yaşayan insanlar için çalışmalar yürütüyoruz. Büyük önem verdiğimiz amaçlarımızdan birisi de toplumun bu konuya dikkatini çekmek. Böylece CP ile yaşayan vatandaşlarımızın sosyal hayata dahil olabilmeleri için bir adım daha atmış olacağız.
Vakıf olarak 2012 yılından beri Dünya CP Günü’nün Türkiye’de öncülüğünü yürütüyoruz. 2015 yılında Dünya Cerebral Palsy Günü’nde toplumun CP farkına varması için bir adım attık ve meydan okuma kampanyası başlattık. Bu kampanyada en önemli amaç; kişilerin kendini Cerebral Palsy’li bir birey gibi hissetmesini sağlamaktı. Bunun için CP’li bireylerin bir çoğunun yaşam boyu yapmakta büyük zorluk yaşadığı 2 eylemi seçtik. Birinci eylem; zıplamak ve zıpladıktan sonra iki ayağının üzerinde sağlamca durabilmekti. İkinci eylemi ise akıcı bir şekilde konuşabilmek olarak belirledik. Bu kampanyayı popüler bir ağ olan sosyal medya araçları (twitter,facebook, instagram) üzerinden yürüttük.
Kampanya dört aşamadan oluşuyordu. Kampanyaya katılmak için;
- Kişi zıpladığı fotoğrafını veya tekerleme söylediği videoyu çekecek ve sosyal medyada paylaşacak
- Kampanya için belirlenen metni kullanacak
- Üç arkadaşını kampanyaya davet edecek
- Daveti kabul etmeyen arkadaşlarından ile SMS ile Vakfımıza bağış yapmasını isteyecek.
Kampanyaya bloggerların, sosyal medya fenomenlerinin, ünlülerin katılmasını sağladık. 2 hafta gibi kısa bir sürede 2.000 kişi bu çağrımıza cevap verdi. Binlerce kişi hem kampanyadan hem de CP’den haberdar oldu.
Kampanyamızı 2016 yılında Ekim ayında yine sürdüreceğiz. Çok daha geniş bir katılım hedefliyoruz. Kampanyamızın farklı ülkelerde CP için çalışan STK’larca benimsenerek hayata geçirilmesi bizleri çok mutlu edecektir. Böylece daha büyük bir kitlelere ulaşabileceğiz.
Bu çabalarımız ile bir gün CP’li bireylerin tüm haklarına kavuşacaklarına inanıyoruz!