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.

In his second blog post for World CP Day, guest blogger Christian Karlsen from Norway talks about his experience as an international student in Australia…

I haven’t travelled much in my life, and when I have it hasn’t been longer than to neighboring Scandinavian countries. When you have a disability, or an extra need for security, comfort, familiar people or control in your life, it feels easier to stay at home where all is safe and familiar.

Travelling may seem scary with the challenges we have in our lives, especially alone. I think that if we challenge our fear and chose to take the opportunity, we may end up rich in good experiences, great memories, and a better understanding of who we are.

My name is Christian Karlsen, I have cerebral palsy that is affecting my whole body and in addition diabetes type 1. I’m a psychology student from Norway who has just attended a semester at the University of Sydney, which is on the other side of the globe from Norway.

During my time in Sydney I took psychology, cultural and philosophical studies, and lived in a student accommodation building called Queen Mary Building in Camperdown.

Facing the fears

The thought of travelling for the first time alone across the globe was terrifying, but I knew that giving in to my fear would rob me of the opportunity to experience one of the greatest times in my life.

I believe that being scared or anxious is good, because it motivates us to plan ahead and keeps us prepared, but it can become a problem when we let the fear dictate what we do in life. The fear can be quite convincing. I’ve been convinced by it many times in my life, but most of the time the fear isn’t based on the reality of the dangers and problems that may arise, nor truly based on our ability to solve them or receiving assistance.

I knew my fear of going to Sydney wasn’t based in reality, and that I overestimated the dangers and problems that I could face during my time in Sydney.

That isn’t to say that I wasn’t scared when I lived in Sydney, or that there weren’t any unforeseen problems. The population in Sydney is 5 million, the same as my entire country, and I lived almost in the center of Sydney. This led to many complications for me at first. Everything from travelling the city, buying groceries, going on trips outside of Sydney or knowing what to do in case of an emergency.

Making connections

Luckily the Queen Mary Building arranged many social interactions and activities, and when you are an international student it gets easier to find friends in other international students. I found several Australian friends, which I feel is because the student community in Sydney is very friendly. When it comes to my disability, I didn’t feel it was an obstacle. Maybe it was on a rare occasion, but mostly people looked passed it and focused on who I am.

We learn and adapt to challenges that comes along the way, and during my time in Sydney the challenges were solved. I figured out how to live comfortably in the city. Some of the first places I went to in Sydney were places I could either ask people for assistance, or be directed to someone that could give me assistance.

Some of them worked at the student accommodation I lived in, or at the university disability and information services. An example of assistance I needed was getting to and from my classes, which was challenging for me. The University of Sydney arranged for the campus security to drive me each time.

Take the leap

Most universities in the world, or travel agencies, have people or departments with the sole purpose of helping people with disabilities or other issues. The key is to reach out to them and work with them on finding solutions!

When you shift your focus from the fear and thought of how problematic the complications will be, to find out how they can be solved, you might see that travelling may be far less complicated than it seems at first.

If you are scared of travelling then be sure that your fears are representing real dangers, focus on the solutions instead of the problems, plan ahead by examining who and where you can find and receive assistance. The solutions are out there, along with the great memories you will get along the way.

Take the time and experience the world!

CONTACT

If you would like to contact Christian, his email is: chmk@online.no

 

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