, ,

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.

/by
,

Matilda Mason Makes Her Mark through Mentoring

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.

/by
, , ,

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.

/by
, ,

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:

/by
,

Jerusha Mather Makes Her Mark on Medicine

Born in Sri Lanka in 1994, Jerusha was destined to achieve great things.

She was diagnosed with atheoid cerebral palsy by doctors in Sri Lanka who said that it was unlikely she would ever walk or talk.

With this information, her parents decided to immigrate to Australia where they could access a more advanced medical system.

Atheoid cerebral palsy, otherwise known as dyskinetic cerebral palsy is characterized by abnormal, involuntary movement.

It’s safe to say that she proved those doctors wrong. Not only can she walk and talk, she attended mainstream primary and high schools, and has completed a Bachelor of Science (Biomedical Sciences) at Victoria University and a Biomedical Sciences honours year at RMIT University.

With those qualifications under her belt, she commenced a PhD at Victoria University in the area of biomedical sciences, and is currently investigating if strength training can improve neuromuscular and motor function in adults with cerebral palsy.

This means she’s working on finding out if there are ways to improve the way a person’s brain communicates with their muscles, which could make a difference to their ability to move their muscles.

Jerusha’s schooling experience

At school, Jerusha says she “did okay.”

While she experienced bullying and had some challenges making friends and managing her workload, she says:

“I got involved in a lot of fun things (including music, reading, and sport) and focused on the positive things. I made a difference in my community.”

Though Jerusha’s experience at school was largely positive, she knows there’s plenty of room for improvement.

“I think we need to think about tasks differently, and design them to focus on the person’s strengths and abilities. We need to build online interactive learning and testing platforms that support the student’s abilities.

“We definitely need to develop better software for people with CP, and create appropriate support services that are professional and thoughtful. We also need to be flexible and open minded about things,” offered Jerusha.

Finding her passion

It was midway through high school that Jerusha realised her calling.

“I have always had a strong desire to help people. I also loved biology and thought medicine was a perfect career pathway to do this,” she said.

Fast forward a few years and Jerusha has certainly made her mark on the medical field through her research, and additionally with her efforts in advocating for changes to the Australian medical school entrance testing structure.

Advocating for change

For many years Jerusha has dreamt of becoming a medical doctor. As a young person she wished she could have had a doctor with similar life experiences to her own—someone who could relate to her personally and also relate to her condition.

With few examples out there, Jerusha is aiming to become the doctor she wishes she had as a young person. She knows that as a medical doctor she will be able to approach her patients with a level of empathy and understanding that many others don’t have.

Jerusha says:

“I would like to change perceptions and ideals of people with a disability in medicine, and challenge and disrupt discriminative systems in medicine and make them inclusive.”

She says the entrance exam alone (GAMSAT – Graduate Medical School Admissions Test) is brutally challenging.

“The GAMSAT is not like typical university exams as they’re not testing prior knowledge. It’s a timed and hand written test which assesses a person’s ability to solve problems.

“Like what is offered to indigenous students, there also needs to be special pathways and entry schemes for students with a disability that consider their disadvantage and consider them on their merit and abilities.”

“There’s also an interview component where discrimination can occur as someone could easily judge me based on my disability and underestimate my ability,” said Jerusha.

Changing the selection criteria

Jerusha is working alongside a representative from the Australian Medical Association to change the selection criteria.

“There is a clause with a policy document created by the Australian Medical Council that states that medical schools should create special entry schemes for disadvantaged groups, and we are using this clause to fight very hard for the rights of students with a disability.

“We are building a very strong case that will ensure that no discrimination (from medical schools) occurs in the future,” said Jerusha.

Not only will this give Jerusha a greater chance of gaining entrance into medical school, it’ll be a huge win for people with disabilities who wish to become doctors.

If alternative entry pathways are implemented then Jerusha believes more students with disabilities will feel comfortable disclosing their disability, which will allow medical schools to prepare for the student’s journey ahead of time.

This, she says, will help medical students to approach things like completing exams and clinical placements without so much pressure, stress and difficulty.

Jerusha’s advice for others with CP looking to make their mark

“Do not give up on your mission to create a difference. You will get there. I think your ideas and stories are important in creating a diverse and inclusive society. Creative minds are much needed in today’s society. Talk about and action them,” said Jerusha.

/by
,

Cerebral palsy: changing the narrative

Challenging assumptions

A young man reached out to me the other day, wanting to make impact in the lives of children with special needs.

He kept asking, “What can we donate to help children with cerebral palsy?” Instead of giving him an answer, I invited him over for a conversation.

I asked him why he wanted to donate to children with cerebral palsy and why he is into philanthropy, since that it not a very common thing with young Ghanaian men.

He said: “I had a friend who got paralyzed suddenly, doctors said it was cerebral palsy .* I really cannot connect the dots on what the doctors are saying but it occurred to me that I could reach out to people like my friend and help out.”

“I do not know how many of such people are paralyzed and forced to beg on the street because of that, I want to make an impact.”

I could see that the young man came with an open heart and a clear intention but needed to know more about the category of people he had chosen to help.

So I provoked him a bit, I asked him, that supposing he donated bags of rice, bails of clothing, packs of diapers and wipes and many other things and I call him after a few months to say that the things are finished and I needed more what will be do.

He said, “I will be upset,” then I asked again, “How do you expect me to do anything when you have committed yourself to supply me with all I need till I die?”

He seemed confused by my line of questioning so I told him that I appreciated his commitment to support children with special needs, but it could be directed in a more productive and sustainable way instead of just donating items to them.

A different way

The narrative on cerebral palsy in Ghana, most of the time has been “we are poor, we need food, we need diapers and the like….” It is mostly communication that is intended to draw pity to families raising children with cerebral palsy, with the aim of receiving handouts.

So the story has remained the same over the years, I gave birth to a child with cerebral palsy and I had to stop work and take care of her, now I don’t have anything blablabla which to me is not just pathetic but appalling.

Instead of working together to ensure that there are policies in place that takes care of children with cerebral palsy in the long term, many prefer being given some handouts, many are made to think that there is nothing that can be done except to beg. In any case begging has become a very lucrative business for some people in Ghana.

The other day someone pointed to me a beggar who had built a mansion out of his begging business, in fact many beggars on the street are able to recruit able bodied young men and women to push them under the scorching sun, it is very lucrative I learnt.

Spirit of entrepreneurship

Anyway back to the age-old narrative, even in Ghana, I have seen mothers of children with special needs who have made tremendous impact.

One such mother is Mrs Serwaa Quainoo who started the Autism Awareness, Care and Training Center which provides training and educational services to children with autism in order for them to function more effectively in society.

Aunty Serwaa as she is affectionately called has made so much impact in terms of creating awareness on autism, back in the days and even now, I use to see her on TV talking about autism.
Her organization serves many families raising children with autism.

Another person who inspires me outside the borders of Ghana is a lady by name Shona McDonald, mother of a lady with cerebral palsy turned entrepreneur because of her daughter.

She started an organization called ShonaQuip. Shona, at the age of 19 had a daughter, Shelley, who was born with cerebral palsy (CP). At the time the only wheelchairs available were for adults and even these were only designed for temporary transportation within hospitals. “Shelley was given a foam-padded folded cardboard insert for her pram with a large piece of webbing to tie her in. I learned that once CP children outgrew their prams the option was to tie them into hospital wheelchairs,” she explains.

Refusing to accept what was available, McDonald poured over books on CP sent from a cousin in the UK. What she noticed were the wheelchairs. “There was an amazing photo of a chair from Sweden so I asked my cousin to buy the motor and wheels from England and bring them over.” Parts in hand, she approached the Biomedical Engineering Department at UCT where, working from a photograph, she and Mike Price built Shelley a chair.

The motorized chair solved Shelley’s mobility challenges so McDonald moved on to other issues, developing communication cards so that Shelley could tell her parents what she wanted, and modifying toys so she could play. Being involved in parental support groups, it was only a matter of time before people started requesting similar products for their disabled children, and a business was born in McDonald’s home.”
I think that our needs should lead us to innovations, inventions and solutions and not the other way round.

A movement for change

The Special Mothers Project, an advocacy and awareness creation program on cerebral palsy, is starting training seminars for various stakeholders in Ghana to advocate, deepen knowledge and create a change.

Our first training seminar scheduled to take place mid-October is on the theme: “Entrepreneurship Opportunities in the Special Needs World – Changing the Narrative”

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project said “I think that the lack of support services and systems for families raising children with cerebral palsy is what pushes many into begging and pity partying.”

Ghana will join the rest of the world to celebrate World Cerebral Palsy Day on 6 October, the day celebrates the achievement of persons with cerebral palsy and their care givers.

Mrs Awadzi said “It is about time we change the narrative on cerebral palsy in Ghana. We want to make cerebral palsy a “celebrity”.

LINKS

* NOTE:  Cerebral palsy is a disability that is acquired before birth or soon after. An injury causing paralysis later in life is not classified as cerebral palsy.

 

/by
, ,

Nick Schumi

Guest blogger, Emily Kachenko, meets the impressive young Nick Schumi from Adelaide in South Australia.

World Cerebral Palsy Day is a social movement, of, by and for the CP community. Its vision is to ensure that everyone with CP has the same rights, access and opportunities as anyone else. Let’s meet Nick Schumi who has been advocating for these things in the lives of people living with a disability for many years.

Nick is an Adelaide man who is passionate about empowering young people with a disability to reach their full potential. Nick has cerebral palsy and is qualified in youth and social work, specializing in the disability space. These days, among many other things, Nick is both an employee and participant of Immersion Therapy, with Determined2, a world first way in which people with injury or disability can have access to water based movement, with the use of SCUBA equipment, allows benefits like never before.

For many years Nick has been a keen contributor to advisory committees, advocating to have the voices of young people with a disability heard. Around 10 years ago, Nick signed up to attend a forum on the experiences of young people with a disability held by the Julia Farr Association (JFA Purple Orange) …along with only one other person. Disappointed by the low turnout, Nick offered to reorganise the event. This time 12 people attended.  At the meeting, fruitful discussions identified what was important to these young people and what services were and weren’t working. The forum also identified a need for a peer support program between people with a lived experience of disability. Nick says the program was needed as there was nothing similar available to help people live inclusive lives and develop to their full potential.

Unfortunately, it was the experience of many participants that while they were asked for their input at similar forums, the implementation of concrete programs to address the issues raised was less likely to happen. Nick was ready to change this trend. When the opportunity to implement the program presented itself, Nick threw himself into organising it.

After around two years of planning, Julia Farr Youth Mentoring was launched. This program offers peer-to-peer support for young people living with disability. The mentee (aged between 11 and 18) is mentored by a mentor (aged between 18 and 30) who also lives with disability. A mentor and mentee will catch up a couple of hours each fortnight to do things they are both interested in, such as watching a movie, playing video games, playing sport, getting a bite to eat or going to a park. Sometimes there are specific goals, such as practising catching a bus or transitioning from primary to high school or to life after high school. A mentee/mentor relationship can last between four and 12 months, or longer depending on the relationship.

After the hard work of planning, Nick was ready to be a part of the first mentor/mentee relationship and began by mentoring a young boy living with cerebral palsy. This boy was making the transition from primary school to high school, which involved leaving his friendship group as the new school his friends were attending was not able to accommodate him.

Nick was able to get to know the mentee’s family and tells the story of how after having dinner with the family for the first time the boy’s mother asked Nick if he had noticed that the boy had used his cutlery? Nick had noticed. The boy’s mother explained that usually her son started the meal using knives and forks but, due to dexterity issues and involuntary movements, usually asked someone to help him. The mentee finished his meal using his cutlery, with his Mum attributing this to the motivating presence of Nick, who was a little bit older, navigating a similar lived experience and relating to her son at his level.

Nick admits when first becoming a mentor he had some self-doubt, wondering whether he had something to offer. These doubts were soon forgotten, with Nick being able to help his mentee in practical and meaningful ways. This included getting the appropriate clearances to accompany his mentee to his new high school to help him make new friendships in his new environment. As Nick says, “not just talking, but doing”. This points to an added benefit of the program, with mentors also gaining a sense of achievement from their involvement. Mentors also regularly get together to learn new skills and to share their mentoring experiences.

Since this first mentor-mentee relationship there have been dozens of others. Nick is no longer involved directly with the program, (other than as a ongoing consultant for other projects) having passed on his knowledge and experiences to others, empowering them to continue the work of the program. Nick says the program is a success as the young people themselves are in control of its direction. Young people with a lived experience of disability continue to be involved in all aspects of the program ensuring it remains as relevant as possible.

When asked whether he has any tips for other people wanting to create a similar program, Nick says it is important to give young people with a disability the space to create programs which are meaningful to them. He also wisely says that it is important to get these programs right, as it is young people’s lives, after all.

/by
,

Toby Morrison: Hemiplegia

Hi. My name is Toby Morrison, I’m 25 years old. I want to talk to you about my experience of having cerebral palsy.

I’m currently the Assistant Manager of the Crouch End shop at the London Centre for Children with Cerebral Palsy in North London. My connection to the charity goes much further back than just volunteering (as I did in the Muswell Hill shop for a year), or working here.

Cerebral palsy and me

Just before I was born, I experienced a haemorrhagic stroke, causing me to develop Hydrocephalus (water on the brain). Due to the subsequent brain injury caused by the build-up of fluid, I also developed Hemiplegia, which in my case affects my right side.

Hemiplegia is essentially a form of cerebral palsy that manifests itself as lifelong effects of a stroke such as poor fine motor skill in one hand and having a limp.

I experienced severe right side neglect – as a young child I only ever thought I had my left side! I remember feeling very frustrated with being unable to use my right hand.

Luckily, my parents were introduced to Dorothy Seglow, who was the mother of a family friend. She had trained as a Conductor in Conductive Education and worked at the LCCCP. So I started having one-to-one sessions with her at their old centre at the top of Muswell Hill. The sessions involved a variety of activities and exercises that enabled me to develop an awareness of and indeed, the use of, my right side.

The techniques were simple to grasp but I remember it did take a while for me to get the hang of it (I was only about 5 years old!) and even to try to use my right hand initially, and it took some time to see the benefits.  Now, with the gift of hindsight, I can definitely see the benefit and vouch for the effectiveness of such techniques.

One of the suggestions I remember very vividly was giving each hand a different name so as to differentiate between them and to allow my parents to prompt me to use my right hand. ‘Toby, this is a two-handed job’ was one of the most common things said to me in the sessions and at home.

As an adult, I find it rather embarrassing that I ever named my hands (I think I called my left hand ‘Ben’ and my right hand ‘John’) but that is in part because they are pretty identical in how well I can use them – aside from fine motor skill. Since then, as I have grown up, I have become more and more independent, and aware of my right side.

Emotionally, Conductive Education helped me to see the worth of having a right hand (I often said as a child I wanted it transplanted or something to that effect) and practically, it has enabled me to develop a much higher level of independence and self-respect.

There are times where I have to use aids but, where possible, I do things using both hands. Being able to use my right hand has also allowed me to travel independently on public transport in London, nationally and even internationally – a massive achievement!

My future

I’ve succeeded in getting through a mixture of mainstream and special need education. I achieved eight good GCSEs, a Distinction for my BTEC National Diploma and most recently, a 2:1 for my Applied Community & Social Studies degree from Coventry University.

My dissertation focused on the impact made by various recent changes to disability benefits (such as the change from Disability Living Allowance to Personal Independence Payments, Employment & Support Allowances and the Work Capability Assessments as well as the impact of the ‘Bedroom Tax’ on people with disabilities). It was quite a challenge getting all that into 8800 words!

I’m now involved in raising awareness of cerebral palsy and advising other young people with a variety of forms of the condition.

I’m looking to either train to be a careers advisor specialising in working with 18 to 24 year olds who experience cerebral palsy or developing a career in charity retail management (hopefully with the LCCCP!).

Based on what I know now about the benefit of Conductive Education and the fact the centre allowed me to develop such an amazing level of independence, I would definitely recommend them to others.

Tips

I would have the following message for other young people with cerebral palsy:

  • Be proud of who you are and how your cerebral palsy contributes to your personal identity – if you have high tone arms, embrace them!
  • Seize every opportunity to raise awareness and remember, people may not always understand; it is up to you to educate them and spread the knowledge about cerebral palsy far and wide.
  • If you are at university, do what you can to get involved with student disability campaign work with your Disabled Students’ Group and get involved with student politics – make sure your voice is heard.

Good luck!

/by

Jon Blake

I was 52 and a well-established children’s author when my partner and I had our first child, Jordi. It soon became evident that he couldn’t sit up like the other kids, or crawl when they started to crawl, but it wasn’t till he was nearly two that he was diagnosed with cerebral palsy. At first it was a terrible blow to us, but eventually Jordi did crawl, then walk (albeit awkwardly). His movement problems did not make him any less open, enthusiastic or affectionate, and the warmth of his personality melted hearts everywhere.

I really do believe that those movement problems had a positive effect on Jordi. Unable to run around with the other kids, he read avidly, and it soon became apparent that his literary abilities were exceptional. At the age of six he won a national poetry competition and began dictating stories which showed not only great originality but also a highly developed sense of how to tell a tale. We put these stories on a website, www.jordiblake.co.uk, which now features his latest work in progress, a novel he is writing at the age of nine.

These days Jordi usually has three or four books on the go at any one time. He’s read just about everything I’ve written, and first came to understand his condition through my story collection “Oshie”, about a boy with CP who has an encyclopaedic knowledge of football. I got that idea from Jordi, who wakes at 6:00 am every Sunday so as not to miss a moment of Match of the Day, and recently featured in Cardiff City’s programme advertising their community football sessions. For many years Jordi was adamant he would become a professional footballer, but now has a more realistic ambition: to become a professional writer. In this I am absolutely confident he will succeed.

Last year I wrote a comic novel for juniors, Thimble Monkey Superstar, about Jams Cogan, a boy with CP, and the lovable anarchic monkey who comes to live with him (there’s also a miserable failed writer dad, but we won’t talk about him). I tried hard to write a chapter of Thimble a day, knowing that Jordi would be rushing home from school eager to read it. He is the best possible audience, not only because he laughs so much, but also because he gets so involved in the story and comes up with dozens of ideas. He even sang the theme tune which we put up at https://youtu.be/7Qje4_vht0c.

Thimble Monkey Superstar aims to entertain, and Jams’s disability is just a fact of life rather than the subject of the book; he uses a walker but is not defined by it. However we do use Thimble events to raise awareness of CP, and therapy centre Bobath Wales helped greatly with the book launch and feature it on their website http://www.bobathwales.org . We’re planning an event at Bobath for World Cerebral Palsy Day on Oct 5 (see www.worldcpday.org and #WorldCPDay).

So far response to the book has been fantastic. In my experience most schools do not teach enough about disability and I do believe Thimble will prove a great place to start.

/by
,

Parenting with a disability: Halldor Bjarnason

With some goals, the end is just the beginning. . . .

For 27 years, I wanted to be a parent. As a teenager, after working as a Beaver Scout leader and working a summer job with small children as a teacher’s aide, I knew that raising a child was an experience I wanted, no – I NEEDED, to have.

Along the road, I have had a lot of successes – achieving the highest honour as a Canadian Boy Scout – the Chief Scout Award, being awarded a Governor General’s Medal, a Courage to Come Back Award, and a Terry Fox Humanitarian Award, winning a gold medal/setting a world record at the ’88 Seoul Paralympics, and as a lawyer with a busy estate practice – many community service awards. As I have cerebral palsy, these accolades show a drive to achieve. However, these accomplishments pale when compared to the “big one” – being a parent. . . the process of creating, and then helping to shape a living, loving, contributing member of society.

The problem with parenting (especially as a male), is that unlike other goals, it’s not just a unilateral feat. You need a willing, engaged partner – at least for the initial process. To further complicate things, I had been raised in an environment where everyone had two parents, so the idea of being a single parent – if such was even possible – hadn’t even occurred to me.

As a result, for the 27-year quest, I worked on finding what I THOUGHT was the necessary ingredient – a spouse. Over the years, I dated many lovely, smart, delightful women. Unfortunately, none were the “one”. Finally, at 40, I concluded that the dream of being a parent wasn’t going to be fulfilled.

A son to love

Apparently God had other plans. . . At 42, I became the father to the most wonderful little being I had ever met – Elliot. Our adventure together began about 5 hours after his birth. As I cuddled Elliot, my first words to him were, “Hi! I’m your Daddy, and I’ve been waiting for you for a very, very long time”. Elliot opened his eyes, reached up, wrapped his tiny hand around my thumb, and squeezed it harder than I thought was possible.

While Elliot’s mom had no interest in sharing her life with me, 10 days after his arrival, I started caring for Elliot a couple of days a week. With the help of my mother, I learned to pick up Elliot, change him, bathe him, and feed and nurture him. By age 5, I began caring for him half-time. As our adventure evolved, I realized that as a parent, the child’s arrival is just the beginning. My role is to create a model, to set a positive example and to help my child to become an active, contributing member of society. I try to accomplish this is by showing Elliot that he has one person in the world who is absolutely blindly nutty about him, and no matter what he does, he has no doubt that I still love him with every molecule of my body.

Compassion and contribution

At the same time, my cerebral palsy has had an interesting effect on Elliot’s psyche. Elliot has evolved into an empathetic, kind, considerate little person – illustrated, in part, by the first aid kit he carries in his backpack, and uses to patch-up the “casualties” he passes on the school ground.

From such an early age, Elliot’s desire to ‘contribute’ has been intriguing. . . At eight months, one day as I was changing his diaper, I noticed that he was helping by picking up his little butt to make it easier to slide the diaper under him! Similarly, in response to my challenge in picking him up, at 12 months, he suddenly started lifting his arms each time I went to pick him up – making it easy to slip my arms around him.

At 20 months, I realized he was picking up on my concern for others. We were hanging out one afternoon when I got a call that a client only had a few hours to live – and she needed her will signed NOW. Not having time to find childcare, I bundled Elliot into my car, and raced to my client’s house. When we walked in her front door, Elliot’s usual giggling subsided, and he became very quiet – not frightened or sad – just quiet. When we entered my client’s room, on his own initiative, Elliot marched over to her bed. After stroking her blanket for a minute, he began stroking her arm, and then gave her a grin. Despite her pain, she smiled back, after which Elliot reverted to a typical little boy and traipsed off to inspect the flashing lights of her life support machinery. I’m told that after Elliot’s visit, my client lived three days longer than expected. . .

At age 6, Elliot started insisting that HE be the one who helps me in restaurants. At a breakfast buffet on a trip during Spring Break, I made the grave mistake of asking a server to help me carry glasses of juice to our table. Elliot turned, and with hands on his hips and the sternest look ever, exclaimed: “Daddy, if you need help, you ask ME! Do you understand?”

While parenting – and loving – my child feels good, it also provides a way to affect the community. We need a world that has people in it who have compassion for others. I can’t change the world myself, or even make a small dent, but I believe that by my giving Elliot a loving and caring upbringing, he’ll grow to be loving and supportive of others. This will, in turn, make the community a better place for all. There’s always a chance that Elliot will grow up to be an axe-murderer. But more likely, as I think of the tiny 8-month-old pulling his butt off the ground to assist in diaper changing, I believe this is a being who, as a result of having a parent with cerebral palsy, already understands compassion for others. With the right role model, a child becomes a contributor surprisingly early on in life – a long time before you would believe it possible.

Isn’t this the ultimate dream for a parent?

ABOUT HALLDOR BJARNASON

Halldor is a Barrister and Solicitor at Access Law Group in Vancouver, Canada. He is a former director of Neil Squire Foundation and former National President of Canadian Cerebral Palsy Sports Association. Halldor is also a former executive director and current member at the Cerebral Palsy Association of British Columbia.

In 1988, Halldor was a gold medalist and broke the world record in the cycling event at the Seoul Summer Paralympic Games.

/by

Follow Us

Quick Links

Resources
Contact
Accessibility
Privacy

Subscribe

© World Cerebral Palsy Day 2020   |   All Rights Reserved   |   Site by Ripple Marketing Australia