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Kevin Tyrrell Make His Mark… With His Nose!

Kevin was three months old when he was diagnosed with Athetoid (dyskinetic) cerebral palsy. Now 24 years’ old, Kevin is Making His Mark as an author.

Kevin’s CP impacts the use of his hands, and his spasms meant many of the ways other people with CP use technology didn’t work for him.

“I was introduced to a head pointer by my occupational therapist at around 10 years old, but the metal gave me a headache after a while. Then I used my nose one day and realised I was more in control and more efficient. From then on I used my nose,” shared Kevin.

Kevin loves to write, and is using his unique perspective to pen stories he hopes will inspire others.

“My goal is to become a well-known successful author and inspire others to maximize their abilities.

“An able bodied person can see the world standing while I see the world from a wheelchair so my perspective is more of a unique humbleness and to be blessed by my faith,” said Kevin.

Practically, Kevin has had to make some adjustments to ensure he can type comfortably.

“I have a Phone holder that puts my phone in an upright position so I can access my phone with my nose while in sitting in my wheelchair as opposed to sitting on the floor leaning over my phone or laptop,” Kevin added.

Kevin’s advice to others is to be open to new ideas, and to try a bit of innovation and creativity.

“Don’t be afraid to try things, sometimes it may just need to be modified and other times it just cannot happen and it’s okay to accept that. God has a purpose for all of us. There is no perfect and there is no normal. We are all special,” Kevin finished.

Kevin also shared one of his favourite bible verses.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. “ Psalm 139: 13-14.

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Make Your Mark: Success Story of Anila

A story by the Tauri Foundation, Bangladesh

The life of Afia Kabir Anila is full of struggle, determination and achievements. She is a volunteer of Tauri Foundation,Bangladesh currently a student of Law in North South University, a disability rights activist & motivational speaker and a recipient of “Distressed Children International’s (DCI) Young Leadership award in 2017 in the USA. She also received “Successful Person with Disabilities 2019” award handed over by the Honb’le Prime Minister of Bangladesh.

Her birth brought unfathomable joy and happiness to her parents. But soon the joy turned in to heart breaking frustration and agony when she was diagnosed with Cerebral Palsy. They felt hopeless but their indomitable love made them determined never to give up.  Because Anila is a special child, starting her early schooling was difficult as no regular school accepted her to enroll. Her parents had to visit almost every regular school in Dhaka. Even being satisfied with her interview, a renowned school regretted her. Some schools denied her admission on the ground that if she was admitted in their school, they would lose other students as some thought her disability was contagious. After repeated request one school agreed to interview her and after being satisfied with her interview, they enrolled her and that was where her real journey started. She was performing well and promoted one class to another. In one occasion when her classroom was shifted, the school authority allocated a space for her in front of the toilet door (as they had no sitting options for wheelchair-bound students). So, she had to change her school. She is so unfortunate that she didn’t get the opportunity to study in the good schools of Dhaka due to her disabilities, though her parents were able to bear the expenses.

After a couple of years of regular schooling when she became eligible to sit for O and A Level exams, she faced tremendous problems. For example, British Council provided her a scribe of different background and as a consequence she had to face difficulties in communication during her exam. So, her knowledge did not reflect in her results, though she had been working very hard. She expresses her frustration – “I attended the school regularly but I can’t write and stand.  Many times at school people can’t understand me.  I have a woman who writes for me but often she doesn’t understand and I have to spell out the words.

As a member of Global Children Panel of Save the Children UK, she talked in the Global Children Panel Members’ meeting held in London in 2011 and they accepted her proposal to work for the education of children with disabilities.

In 2012 at the age of 14 she attended an international conference on disability in Goa, India. 200 delegates from different parts of the world joined the conference and she was the youngest participant. Comments made by the organizers on her speech reads – “The person who stole the show on the third day is also the youngest delegate in the conference – 14 year old Anila from Bangladesh. Holding the audience in rapt attention for 10 minutes, this spunky girl who has cerebral palsy said in slow but intelligible English, ‘It is painful when I go to the market and people stare. I am not included in schools. I have seen my mother cry so many times due to this.’ The young age has not come into the way of her asserting her fundamental rights as she has been instrumental in bringing disability into the purview of the globally reputed organization ‘Save The Children’.

Presently along with her study of Law in a reputed university, she delivers talk on child hygiene, nutrition and importance of health care for children with disabilities in rural areas of Bangladesh. She believes that that seeing her physically the rural parents would develop a confidence that their special children can also become like her.

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Xian Horn Makes Her Mark through the Adaptive Fashion Revolution

Meet Xian Horn, a teacher, speaker, beauty advocate and Forbes blogger who is Making Her Mark through her contribution to adaptive fashion, and the self-esteem of people with disabilities all around the world.

Xian’s cerebral palsy manifests in muscle tension, muscle weakness, poor balance and coordination and dragging her left foot. She walks with adapted two ski poles for balance, which she says she occasionally dresses up to compliment an outfit, for example, black Satin for prom.

Through stories, workshops and mentoring, Xian works to contribute positively to self-esteem and the collective self-image, especially for women.

One not-so-obvious barrier to improving self-esteem is the availability of fashionable clothing that is easy to wear for people with mobility challenges.

Xian says:

“Unless you are 100% confident in every situation regardless of what’s going on around you, lack of options and accessibility definitely affects how we show up in a room. Lack of access to clothes you feel comfortable in is a subtle form of exclusion and can affect your confidence and the quality of interaction with strangers. The right clothes make you shine, help you feel your best, and are such an important part of self-expression.”

Common clothing challenges

Amongst her friends, and others in the CP community, Xian says shirts that need to be put on over the head can be a big challenge, especially for those with tension in their arms. Aside from this, she says there are some dressing challenges that many of her CP Sibs have in common.

“The consistent issues I’ve seen in the community seem to be with buttons and closures and with finding comfortable, sturdy, yet stylish non-hideous SHOES. Shoes are by far the most common issue among those of us with CP. For those like me who drag a foot you can end up with holes in your shoes in a matter of weeks… or embarrassed because the shoes you’re wearing are durable but not fit for the public—aka not fun to wear at school with friends or at a job!” says Xian.

Xian says that her whole life she’s paid attention to brands that had sturdier soles, like the Merrell branded shoes she wore in different colours for five years straight.

“Those shoes were casual and decent for business and I even wore them to weddings. But after a while, you crave something new. That’s when I discovered that I can wear a chunky heel in a nice boot for speaking engagements or a date and I feel like I’m dressed for my age,” added Xian.

A good relationship with a shoe maker has been a hack that has helped her immensely over the years to make shoes comfortable and extend their life.

“I’ve had them add rubber to strengthen the soles of my shoes before or after the sole has run through or even adjust an uncomfortable or inaccessible strap,” says Xian.

Getting involved in the field of adaptive fashion

Over the last few years, Xian has found herself a contributor to the field of adaptive fashion, beginning in 2016 working with Open Style Lab at Parsons.

In 2017 she was a model in the Cerebral Palsy Foundation’s (CPF) Design for Disability program, which saw the CPF partner with fashion designer, Derek Lam and six young designers from Parsons, Pratt and FIT to create six amazing collections of accessible outfits.

Xian says the experience was fantastic for her and the designers, as there was so much they were able to learn from each other.

“I personally got to learn from my Pratt designer Emily Ridings, about sustainable garments as she made my piece sustainable as well as accessible,” said Xian.

According to Xian, best practice in fashion design is facilitating ease of wear, considering as many unique bodies as possible, and making designs both accessible and beautiful.

“Being aware of the bodies out there and trying to design for everyone is important for looking towards the future of fashion. Also getting rid of unnecessary elements of fashion is important. Maybe your garment does not need a zipper or a button, and a sturdy magnet may improve the garment’s function and ease of access for anyone—not just those of us in the disability community or the elderly.”

Xian says that through her workshops, she found that her students with disabilities in their teens and 20s, with disabilities still have had their parent or Personal Care Attendant choose what they buy and what they put on each day their whole lives. In her classes she encouraged the girls she works with to choose their own. The ability to choose your own clothes and where possible, dress yourself, is vital, says Xian.

“Choosing what you wear is the ultimate expression of identity, independence and uniqueness.

“We deserve sexier options, professional wear, and especially in difficult times when dressing could be a form of self-care, we should be given options that help us feel at home in our bodies and our clothes whether dressing for ourselves or others,” shared Xian.

Xian’s new favourite outfit

Xian modelled in the New York Fashion Week show, Runway of Dreams in September 2020. Through a virtual format where models showed off adaptive clothes in videos from their home towns, Xian walked for Zappos Adaptive. The outfit she modelled has become one of her favourites.

“Typically, I like clothes that are flowy and a bit bohemian. So most days, I would have said [my favourite clothes are] maxi dresses, jumpsuits (purely aesthetic in this case, for my long body type, but still often inaccessible so I need help getting out of them) or tunics, but since walking in NY fashion week in Sept, my new favourite outfit is the professional wear Zappos sent me. This includes the amazing MagnaClick white business “button down” shirt with magnets instead of buttons. I also love my Tommy Hilfiger adaptive Seven7 jeans. For flawless design and beauty, these two NYFW pieces really impress me. The jeans really fit like they were made for me and flattered my behind #ThanksZappos #ThanksTommy!”

She adds:

“It gives me hope for the future of fashion especially making clothes not just for kids with disabilities, but for adults who long to present their best self at home, and at work, or on a date, and celebrate their bodies as they live full fulfilling lives of greater purpose,”  Xian concluded.

For adaptive clothing and footwear options, visit the links below:

To see more about Xian, follow her on:

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Emily Prior – Changing the Face of Advertising

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.

Getting started

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.”

 

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