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.

An article by Jessica Burke

I believe research is the perfect way to educate and create awareness of cerebral palsy and its relation with psychological health. As a young adult with CP, conducting research in the field of psychology and providing insights that have important implications for intervention, paediatrics, teaching and clinical practice is not only significantly important but very exciting and powerful. it gives me a voice and hopefully a voice for others with cerebral Palsy.

My experience of living with Spastic quadriplegic Cerebral Palsy and the impact it had on my psychological wellbeing was the reason I decided to study psychology and the neuroscientific mechanics of the brain in an effort to devote myself to research in particularly investigating psychological health of adults with CP. It took me quite a while to open up to my lectures my goal of wanting to devote myself to research in cp and psychological health. The research was so limited, and still is and nobody ever talked about mental health and Cerebral Palsy. During my undergraduate in psychology the lecturers would discuss different mental health disorders like schizophrenia or depression for example and I was always very occupied sitting at the back of the class pondering how this may relate to cp and making associations between CP and mental health challenges. I then went on to study clinical neuroscience as I was particularly interested in gaining an understanding into the anatomy and physiology of the human brain and body with these too being significantly important in understanding cerebral palsy. It was here I wanted to translate what I leant in the different modules such as neuroanatomy, neurophysiology and neuropsychiatry to name a few to how it may relate to CP physically, psychology and socially. I then went on to study an MA in psychology where I conducted my first major research project on adults with cerebral palsy. I enjoyed every second of conducting the research. I was suddenly connected with people with CP, experts and caregivers who all wanted the same thing of creating more research in mental health an CP. It was a fantastic experience. It also became evident that through all my studies that lecturers and classmates had very little knowledge of CP let alone how it is related with mental health. I felt relieved talking about as I think they were all learning something too.

I love my position of being both a researcher in psychology and neuroscience and a young adult with CP. You have something more than those who studied CP at medical school, a deeper understanding that you would never learn from any textbook. It is crazy getting to work with experts in CP and make decisions from a medical perspective. Growing up with cp your looking up to the team of experts and relying on them to make the best decision for you and for your future. In my early years of my studies the goal seemed so far away its surreal to have gotten this far and achieved the qualifications I wanted, nevertheless my goals are endless, but that’s what gives me strength. I am only somewhere at the beginning. I will continue to contribute to the literature in psychology, neuroscience and Cerebral Palsy and hopefully create an easier future for those who are born and grow up with the condition. For those who are going through such difficulties or already have I hope with my research they can start to find order and meaning in their experience and know that their not alone and can find an ability to reconstruct the strong, defeatless, worthy person they are. I hope others with Cerebral Palsy can too feel inspired and empowered to make their mark in the world because Cerebral Palsy is so important in teaching the world.

An article by Tylia Flores

It’s no secret that technology has taken over the world in the way we had to connect with the world and adapt to the many things around us.

I have always had to use different types of technology to help me adapt to the world around me as someone with cerebral palsy.

I first got introduced to using technology to help me adapt to my everyday life was when I was in the first grade when my teacher noticed that I had a difficult time with handwriting due to my lack of mobility.

So after many failed attempts of trying to occupational therapy to correct the issue of having lack mobility when it came to handwriting and tracing letters, my 1st-grade teacher decided to call my parents for an IEP meeting.

During the IEP meeting, it was determined that I would be given an alpha smart to type with the alpha smart was like a small little keyboard just like you would have it on the computer but without access to the internet and all that good stuff.

I remember being so excited to get the alpha smart so that I didn’t have to have someone help me write my ABC’s I could be an independent student.

But it wasn’t easy learning how to use the alpha smart because I would type very slowly and because the tip of my swan fingers would hurt every time I would touch the keyboard I hated it so much. After all, it had a small screen and couldn’t see what I was typing.

On top of that, the Alpha smart had little accessibility options for me and as someone with Cerebral palsy with lack of mobility it could become overwhelming for us and using the alpha smart did get overwhelming for me and I didn’t enjoy doing my schoolwork and adapting to the world around me as someone with Cerebral palsy.

But luckily, in the 4th grade, my opinion and my heart changed when it came to technology after transferring to a different elementary where they gave me an apple ibookg4 laptop to use for my school work and everyday activities.

Immediately when receiving the ibookg4 model of the Apple laptop I fell in love with it and all the programs on it that had accessibility options to help me adapt to the world and my cerebral palsy.

I felt like the possibilities are endless when opening my MacBook pro every day as I gained the confidence to leave my mark and say take it or leave it this is me my story my way of leaving my mark on society.

As an author, Advocate, Radio show using technology such as Apple products have been it easier to allow my creativity to come out more without worrying about my cerebral palsy being an obstacle in front of me .

I honestly will be forever grateful for technology and the way it has helped me lived my life with Cerebral palsy.

Matilda was 26 years old when she played her first game of football.

Now 28, she’s moved across the country from Western Australia (WA) to Canberra in Australia to follow her dreams of being part of the first female football team to represent Australia at the 2021 IFCPF World Cup.

Matilda, who works in IT for the National Disability Insurance Agency, is part of the Canberra United All Ability Academy, training twice a week with her developing team and has been training with Canberra United’s Under 15s team.

She was introduced to football when she was invited to a Western Australian cerebral palsy and acquired brain injury (ABI) promotion weekend in WA.

When she represented the ACT at the 2019 Australian CP National Championships – the first time female players were able to represent their states – she was coached by a woman named Kelly Striton. Matilda’s team was the first team to be led a female coach, something she is very proud and privileged to be a part of.

“Kelly has become a mentor to me, showing and driving me to do the best I can,” said Matilda.

Matilda says she’s had a number of mentors and role models who were instrumental in getting her to where she is today.

“My mentors have helped to connect me with others across the world. I think each mentor is able to provide something new to me. They know more than I do about what I’m able to achieve,” Matilda offered.

Matilda knows the value of mentoring, and has been mentoring for many years now.

“Before I was moving to Canberra, I was coaching younger kids affected by cerebral palsy and ABI. Most recently I became part of a football community within my local club Tuggeranong Football.

“Though it was a short season, I coached the under 10 girls’ team. All I wanted was them to have fun, training twice a week and playing on the weekend,” said Matilda.

She’s also had the opportunity to work closely with larger groups of young people.

“Through the all ability academy, I was invited to attend the all ability football league training sessions where I played and assisted with up to 30 kids using their strength and skills to play football at the best of their ability,” Matilda shared.

Matilda believes a mentor’s role is to provide all different types of support and guidance for the many different facets of your life. This could include career and future goals, or even encouragement to explore new and different hobbies.

She says a mentor is like a step above being a friend. Your job is to support the person to have a voice, and listen to what they want and need. Matilda also feels mentors can take steps to educate other people in the mentee’s life about their life, wants and needs.

As a mentor, Matilda’s goal is to show others that people with disabilities are capable of achieving anything they put their mind to, and that when the going gets tough, she’ll be there to catch her mentees and pick them up.

“Disabilities are disadvantages, but we have plenty of other advantages that are more important.

“Growing up, I didn’t have the internet or the knowledge available in today’s society, neither did the ones closest to me. I hope to use the experiences I have had and pass on what I did and how I coped with my disadvantages (aka disabilities) onto the next generation.

“Since playing football, this was exactly the program and inclusion I was hoping to become a part of. Providing the opportunity to be a part of something so special and important to them.

“I hope to build a network and community or family where everyone is seen and heard,” Matilda finished.

The All Ability League began on October 3 and runs until 21 November. The session run on Saturday mornings at Hawker Football Centre between 9:00am – 10:30am. The League is aimed at ages 5 to open, male and female.

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.

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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