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.

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.

Charlie McMartin, a young man who lives with cerebral palsy, has a message he’d like to share:

“Bullying hurts people’s feelings and lowers their self-esteem. People with disabilities are just like anyone else. We just have greater obstacles to face than most people.”

From May 28 to June 3, 2017, the Cerebral Palsy Association of BC (CPABC) launched the #JustLikeYou campaign as part of 2017 National Victims and Survivors of Crime Week in Canada.

CPABC shared thoughtful messages and highlighted resources that can be used when faced with victimization. The campaign was shared through social media, transit and print advertisements asking readers to take action by joining the conversation using the hashtags: #VictimsWeek, #StopBullying & #JustLikeYou.

Three hundred thousand people in the Lower Mainland of British Columbia were reached through targeted messaging during Victims Week 2017.

Children and youth with disabilities are especially vulnerable to being bullied by their peers, according to CanChild Centre for Childhood Disability Research and Holland Bloorview Kids Rehabilitation Hospital. Reports show this trend also permeates into older age groups.

While many efforts have been made to increase acceptance for people with disabilities, new media and technology have changed the landscape for bullying.

“I think people are being bullied even more today because of social media and selfies that can be widely circulated,” says an anonymous member. “It is very difficult for young people to not be affected by social media and dating sites. The situation opens up a whole new set of challenges.”

CPABC Executive Director Feri Dehdar says, “People with disabilities are already strong and resilient and overcome many challenges every day. We believe that victims need to be resilient, but so do the witnesses. It’s a matter of mobilizing our thoughts and being part of the solution, not standing silently.”

The CPABC campaign encouraged children and youth to feel socially included by building their confidence and offering peer support. Bystanders are asked to consider being a friend to someone who doesn’t have support, and lead them to resiliency by helping them cope. Talk to your friends, family and loved ones. Express your feelings non-violently and share with those who support you.

It’s a matter of mobilizing. Supporting anti-bullying sentiments are only half the battle. If we want to #StopBullying, we need to take action.

No man is an island, so the saying goes, however most people living with cerebral palsy in Ghana are isolated from public life.

People with cerebral palsy are denied education, sometimes basic health care and almost completely isolated from public activities. Mostly children with cerebral palsy are kept indoors and this is not the making of only the parents, but the society.

The facilities to help people living with cerebral palsy to have an enhanced life are simply not there. Additionally, awareness about cerebral palsy is very low, even among the educated.

Some parents get frustrated to get point of wishing their own children with cerebral palsy dead, yet others are reportedly frustrated to the point of killing their own children.

There is also no clear pathway for parents or care-givers to follow in terms of managing a person or child with cerebral palsy and those who are able to sustain medical care and support do so at huge financial cost.

Ghana is therefore denied the opportunity to access the impact that people with cerebral palsy could have in terms of their contribution to national development instead many are forced to beg on the street under the scorching sun or rains.

Parents are burdened with managing children with cerebral palsy alone, forcing many parents and care-givers to abandon their jobs or their careers.

Special Mothers Project

The Special Mothers Project, an advocacy and awareness creation organization on cerebral palsy was started when I realized the very low level of awareness on the disorder.

The project creates a platform for parents and care-givers of children with cerebral palsy to get together, share ideas and see how we can together influence policy to favour these children.

As a mother of a 3 year old beautiful girl who has cerebral palsy, I believe that given the necessary supportive environment coupled with the right equipment that facilitate movement and the right policy framework, children with cerebral palsy in Ghana can have an enhanced life.

The Special Mothers Project uses the platform as a skill learning platform where parents and care-givers exchange ideas, share opinions and encourage one another.

With the necessary support and funding, the Project organizes periodic workshops that brings professionals like physiotherapists, speech therapists and special educators together with parents or care-givers to impart knowledge and share ideas.

It also serves as a counselling point to new mothers with cerebral palsy children, given my background in psychology and as a communications professional, as well as the experience of providing social care for children with cerebral palsy

The Project also does a lot of news articles on cerebral palsy and, when given the opportunity, uses the radio platform to educate the public about cerebral palsy.

Education a priority

My biggest desire will be to have government formulate favourable policies that will enable children with cerebral palsy get educated. As is it now, in Ghana, schools use their discretion to either accept or deny a child with cerebral palsy admission.

This is due to the fact that many schools do not know how to handle a child with cerebral palsy. Even though there are special schools in Ghana, they are for children with autism, Down syndrome, blind and deaf.

There is absolutely no provision made for a child with cerebral palsy to be educated in Ghana, so if a parent is not a bit more forceful the child ends up being isolated or killed.

I will be more than glad if the Ghanaian society and the government pay more attention to issues related to cerebral palsy. To at least give these children access to basic education, health care and to enhance their lives to enable them contribute their quota to national development.


Special Mothers Project

Become part of the movement

Cerebral palsy is the most common physical disability in childhood (affecting an average of one in every 500 people) but it is also one of the least understood.

Even in 2015, too little money is being spent on prevention and supportive tools; too many doctors and therapists lack the knowledge to diagnose and treat people with CP around the world; too many families lack access to basic information and support; too few educators have the training ensure people with CP get the education they deserve; and, perhaps most importantly, it is still far too easy to keep people with CP out of sight, out of mind and out of options in communities around the world.

It does not have to be this way.

Information is available. Support exists. Effective policies can be shared among countries. New therapies and preventative tools are emerging every day. Examples of triumph are everywhere.

But it is up to us to make sure that every member of our community has access. We are not asking society to “give” us a “chance.” This is a mandate. A demand that those of us with CP are equal citizens and deserving of the same rights as everyone else.

It is time for us to join together. To share our stories. To share our best ideas. So that each of us has the opportunities we deserve, because all of us are invested in each other’s potential.

World CP Day was created to raise awareness about cerebral palsy.

Today World CP Day has become the foundation for a global social movement. A movement, of, by and for the community of people living with CP to ensure that we will have the same rights, access and opportunities as anyone else in our society.

Become a part of this movement. Share your story. Share your best ideas. So that each of us—all of us—has the opportunities we deserve. Join us on the Map!

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