The Story of Josh Vander Vies - Canadian Paralympian

Hi everyone,

I have another treasure to share with all of you today, a story from an inspirational individual who has carried his disability with his head held high and has inspired family, friends, students and others to believe and suprise themselves!

Josh Vander Vies represented Canada at the 2004 Paralympic Games in Athens, Greece in the sport of Boccia. Josh was born without limbs, but has not let this stop him from creating an amazing life, overcoming challenges and having an amazing attitude. Here is his story.

Josh Vander Vies

The stadium in Athens was at its capacity – 85 000. As I lined up with my fellow Canadian athletes, I could hear the roar of the crowd. It was muffled. We were outside the arena and the air was not still. It shook.

When I crossed the threshold, saw the mass of people celebrating, and heard the deafening cheer of voices pounding elite athletes from around the world, I smiled. I had made it. I represented Canada at the 2004 Paralympic Summer Games in Athens, Greece and finished amongst the top Boccia players on the planet.

Some years earlier, my mom Sandy, came out of the caesarean delivery of her first-born very groggy, as her husband Gary waited eagerly in another room. My mom had had an uneventful pregnancy and had to deliver me caesarean style, because I was breech. As she shook off the drugs, she asked the nurse: “Is it a boy?” The nurse replied that it was, with a small smile. Sandy then asked: “Does he have any hair?” The nurse didn’t know – she was preoccupied with other, seemingly disastrous features.

The doctors explained to my parents that I had been born missing all of my limbs and gave a prediction of my future so bleak that my parents blurted out: “Is he going to die?!” The doctors, a little surprised, laughed and said no that I was perfectly healthy, just without most of my arms and legs. My parents wanted to see me.

When I was brought out to them for the first time, they both took turns kissing me all over and telling me that they loved me. They spent the rest of my life, so far, showing me.

They encouraged me to set hard goals and do what it takes to achieve them. Instead of putting me into a segregated school for children with disabilities, like the experts advised, my parents – unilingual English speakers – enrolled me in a local French immersion school so that I would have a bit more of a challenge!

As I grew, I became interested in physical activity. I joined a swim team for athletes with disabilities and soon competed in Swimming, Shot Put, Discus and Javelin. Then I discovered Boccia – the international Paralympic indoor version of the Italian past time – and was hooked on the intense skill, precision, strategy and competition of pushing myself to get better and better.

Not having hands or full legs presents many tough obstacles. And, like any obstacles that seem insurmountable, they can be shattered. Some I overcame naturally: I learned to write, play and draw by watching my friends. Others I had help with before I could help myself: my dad built me parallel bars and my mom encouraged me to use them to practice walking upright. Other obstacles, I stared at head on and came up with solutions: learning to dress myself when I was 13, becoming an early riser in my mid twenties, and the more recent realisation that what others think about me, doesn’t matter.

I love not having arms and legs, and I love myself (maybe too much – ask anyone who knows me!). I love the things I can do. And, I love the things I can’t do, yet.

You should love yourself too. No matter what circumstances you find yourself in, you have the ability to surprise yourself.

Sometimes I wonder whether or not I have an effect when I visit schools, or speak to audiences. My partner, Dalia, and I were watching a show at the Vancouver Centre for the Performing Arts, and at intermission a couple I didn’t recognise, approached us. One of them was a teacher at a local school I had presented at; she told me that the students were organising a sports day – several months after I had presented – and they insisted that Boccia be included in the program. An outdoor version was included, and was a great success bringing students of all abilities and backgrounds together in friendly competition.

Sometimes I surprise myself.

At a recent corporate presentation, the nicest lady approached me afterwards in tears and told me that my message had affected her in a very personal way. Neither of us could find the words to express ourselves further, so we hugged and smiled and cried.

Sometimes I really surprise myself.

Check out this video from a woman who is an inspiration to us all!!!!

Inspirational man of vision!

I have recently come across an article in Links Magazine written by Carla Caruso, which provides a profile of a very inspirational man, Duncan Meerding.

Duncan is legally blind but has not let that hold him back from reaching big and wonderful things! Duncan has become a crafstma, using his touch and hearing to create amazing pieces of furniture. His pieces are inspired by curved lines and surfaces that are based on the wonderful shapes and appearances of nature! The Syney Morning Herald wrote in an article on Duncan, that "The 23-year-old describes his design as a form of artistic expression to explain how he sees the world now: minimalist objects with flowing lines".

Since beginning to lose his vision at the age of 18 due to the degenerative eye condition, Leber's hereditary optic, Duncan has moved beyond the challenges of what were the simplest things in life, to be able to inspire others through amazing and unique furniture designs.

I would highly suggest that you check out the article on him from either Links Magazine of the Sydney Morning Herald, I think that this wonderful story should really tell people that anything is possible if you put your mind to it!

Have a beautiful day,

Alyssa

Introducing Guest Blogger Melanie

Introducing the amazing Melanie, who is quite an inspiration. I feel very excited about having her publish on this blog. I hope that you enjoy her shared experience. Everyone truly has a story to tell!

Hello. My name is Melanie and I am 26 years old. I am in my second year of studying to become a primary school teacher and I work at IDEAS as an Intake Officer one day a week. I live at home with my mum, step-dad and dog Lilly and look forward to getting a place of my own once I graduate and and have a full time teaching job. I have had a vision impairment since birth. I have congenital cataracts. They were removed when I was 6 weeks old but have permanently damaged my vision. There are no special glasses or laser treatments available that can restore my sight. I have been wearing strong bi-focal glasses since I was two months old.


Did you notice how I started off writing about who I am? There are many elements that make up me. My family and friends, the things I like and the values that are important to me. Sure my disability is a part of me too but it doesn't define who I am. Often something others do without even realising.

I think the only really significant thing that I cannot do is drive a car. That doesn't bother me too much because I have grown up relying on public transport. It is my norm. As far as everything else goes, well, I will always find a way. I have done some pretty out there things including abseiling, canoeing, ice skating, roller blading and bike riding. Hang on a minute… how does a blind person go roller blading, you ask? Well, the same way sighted people do! Putting one foot in front of the other, toppling over and clinging on to someone so tightly that you cut off their circulation!


When I have my vision aids and technology, I am completely capable at fully participating in life. If I need assistance, I ask for it and don't feel ashamed. I used to become quite frustrated with people who would constantly offer to help or do things for me. I couldn't work out why people seemed to feel the need to intervene when I didn't need or ask them to. I've realised that people do have good intentions. Sometimes too good. But the problem is the majority of people don't understand about disability. They don't see it as normal. Quite the opposite in fact. They feel pity and discomfort. When I walk down the streets using my cane, I sometimes hear small children asking their parents what my cane is. 99% of those parents tell their children to be quiet or to stop being so rude. I think I am more comfortable about talking about my disability than most others around me. I want little children to come up to me and ask questions. If they don't, then how are they going to understand that I am a normal, capable person just as they are. Instead they are getting the message that something is terribly wrong. This isn't terribly wrong for me. I don't even think about it all that much. I have had this my entire life so I don't know any different.


A lot needs to change in society. I am really passionate about inclusion. That is, no segregation, no special schools, no institutions, no restrictions. I want to see a society where disability is the norm. It's just as accepted as having brown eyes or red hair. In a perfect world all buildings and forms of transport would be accessible. All written material would be provided in alternative formats such as Braille and audio. Schools would be adequately funded to support children with disability, and include them in mainstream classes. Teachers would be trained to adapt the curriculum to cater to these students. Workplaces wouldn't think twice about hiring a person with disability. The parents of little children would encourage them to go up to people like myself and talk to us rather than shy away. I could go on and on… of course, we are progressing but at such a slow rate. I hope I get to experience a society like this in my time. People often ask me if my vision can be "fixed". They talk about laser, bionic eyes etc. and try and encourage me by saying that technology continues to improve so surely there will be a cure in my lifetime. I don't think about that stuff. As far as I am concerned, nothing needs to be fixed. I'm fine just the way I am.

Your home need not become your prison

I am very excited about the blog post that I can offer you today. I have made contact with a very inspirational and symbolic individual and have recieved permission to publish her amazing article here. I know that you will all know of her. Cynthia Banham is an Australian journalist that writes for the Sydney Morning Herald, and I believe some other publications on the occassion. Her role as a journalist and her great ability to source stories led her into a dangerous situation that left her with only half of one of her legs. In 2007 a plane crash occurred in Indonesia, claiming the lives of 21 individuals, including 5 Australians. An article described Banham's escape from the fires when she was "airlifted to Perth from Indonesia with back injuries and extensive burns to her lower body after a Garuda Boeing 737-400 plunged off a runway at Yogvakarta and caught fire..." The crash left Cynthia with a disability. However, Cynthia has really proven that one can achieve just as much no matter ones disability. Her future in journalism has been fabulous and she has sent article after article to the Australian population sharing her amazing experiences. One particular article struck my and most of Australia's eyes. From the permission of Cynthia herself and taken from SMH here is her article 'Your home need not become your prison'.

Cynthia Banham


You never plan for a life-changing injury. It's something you just hope never happens. Growing old is more of a certainty. But both events can have a profound impact on the way you feel about your home: a sanctuary, or a kind of prison.

I know this first-hand. Catastrophic injuries from a plane crash changed my world forever. If not for the efforts of a family friend, a builder who extensively modified my home while I was still in hospital, I would not have been able to get in the front door, let alone my kitchen or shower.

But what really came as a shock was the impact my injuries had on visiting family and friends. Dropping in for a meal or a cup of coffee, to stay connected to people, is essential to a person's mental well-being. Yet here I was, left in tears on a visit to my in-laws from the indignity of not being able to use their bathroom without help, unable to visit my parents' home where I'd grown up because I couldn't climb the stairs to their front door.

We have laws about accessibility standards in public spaces, but for private homes there are none and I never imagined this would change.

Then eight months ago Bill Shorten, the parliamentary secretary for disabilities, asked me to speak at a meeting he had organised, with Therese Rein as patron, for executives from the housing industry and the ageing, disability and community sectors, at Kirribilli House.

The subject was "universal design" - building a house to last its occupants' lifetimes so whatever happens, should they get injured or grow old, they will still be able to live independently.

If we introduced some minor, inexpensive changes to the way Australia builds homes - changes many times more expensive if done retrospectively - then no house need be a prison. Making houses accessible from the street or car park, slightly widening front doorways and passages, putting a toilet on the ground floor that could be used by someone with mobility issues.

I agreed, intrigued something could be done to improve the lives of 20 per cent of the Australian population with some kind of a disability, and encouraged this concept could have economic and social benefits for all.

Universal design ideas are already being implemented overseas, in Japan, Britain, Canada and Norway. They are gaining traction in Victoria.

What is the appeal? Like Australia, these places have ageing populations. Given the option, most would prefer to grow old in their own homes, retaining connections with family and social networks where they have spent their lives. But with the majority of homes, this is virtually impossible for older people with mobility issues.

It doesn't stop there. A house built for a lifetime would be easier for mothers with prams and people with temporary injuries.

I started out thinking it was an extremely lofty ambition to get this diverse group to agree there was a case for universal design in Australia. The Property Council of Australia, the Housing Industry Association, Master Builders Australia, the Australian Institute of Architects and the Human Rights Commission are unlikely allies.

But Shorten is a superb negotiator, and the determination he has shown over the past three years to fight for a better deal for some of the less lucky Australians is remarkable.

The final details are being nutted out, but soon this dialogue will deliver concrete proposals to the government. These professionals have surprised even themselves with their ability to reach common ground on an issue that for many will be life-changing, in a good way.

Critics might say they don't want to be told by governments how to build their homes, or they don't want to live in houses resembling hospitals. That's not what this is about. Making a doorway a few centimetres wider does not make a house more sterile, just more liveable.

Is it really that big an ask of Australians to give a damn about their fellow citizens with physical limitations, but still want to engage as fully in society as you, their friends, colleagues, families and neighbours?

You never know, one day you might just grow old.

The Story of Jason Ballerini

I have a real treat for the readers of this blog today. I was lucky enough to get a contribution from Jason Ballerini who is an inspiration and prime example of a strong person with a disability. Let him represent all those who are feeling like the challenge is too much. I think that his story really represents the common saying that you can do anything if you put your mind to it. He is truly fabulous and I am very happy to share with you his story!

Jason Ballerini

As a fit, active 16yr old, with my life ahead of me, social work or having a career in the disability sector were the last things on my mind. After a diving accident in 1996 left me a quadriplegic, not only did I lose the ability to walk, I felt as though all my options, dreams and aspirations washed away down that creek as well.

It was not long into my rehabilitation that I began to feel this passion inside of my stomach, the passion to overcome the social attitudes and barriers I was now facing. From that day on it was my mission to never let anything stop me from achieving what I wanted. Although motivated to achieve, I was still uncertain in what? It wasn’t until the last month of my rehab, my rehab lasted 4 months when I was told I’d be there for 8-10, that I realised a lot of the other patients were coming to me for advice, a chat or for guidance and hope. It was then I realised that social work, in particular, the disability sector was my calling.

After completing a bachelor of Social Work, I began working in the Disability Advocacy field. Through my experience, study and work I have had the opportunity to gain an understanding of the demands on the disability sector, but also to advance the rights of people with disabilities in our community. In trying to set an example that we are only limited by our own imagination and that the possibilities are endless to those who work hard to achieve their dreams.

Often we see people with disability who attempt to "pass" in the non- disabled world, who want nothing to do with disability groups, especially consumer-run groups. Of course people who have invisible disabilities are more able to hide their disabilities, if they choose to do so. It's a bit ridiculous for a wheelchair user like myself to consider hiding the fact.

But it leads me to wonder why I would want to. Why wouldn't I want people to know that I have a disability, that I accept it as part of who I am and that I am proud of who I am? Why wouldn't I want anyone to know that I confront physical and attitudinal barriers every day of my life and that I identify with strong individuals who are part of the disability rights movement?

I don't hide my disability and I don't "overcome" it either. It's just something I live with. I am not handicapped. Society is handicapped when it shuts out people like me. I am not physically challenged. Tri-athletes and mountain climbers are physically challenged. And I'm certainly no more differently- abled than anyone is from anyone else. No. I just simply have a disability. I don't deny it, or hide it.

Being "seen" as a person with a disability is a conscious choice, whether or not one's disability is visible. For the way others view us is closely connected with the way we view ourselves. Choosing to see disability as a part of who we are and recognise our strengths and abilities, is all part of a process. We need to recognise that having a disability is not a negative thing.

Looking back at the last 14yrs, I can acknowledge has been mighty tough, but it has also been the best 14yrs as well. I have grown so much, and the passion to succeed in this industry is as strong as ever. I have loved every minute of studying and working in this field, and the feeling of helping someone, advocating for change and changing attitudes and policy still drives me to get up every morning and go to work.

A Maze Inside a Minefield: Relationships and BPD

Since I first started reading Sandy's blog I have not been able to bring myself away. She has a way with words, a way with sharing the nitty gritty of life and a way of describing disability. I took this posting from her blog because it is just a fantastic introduction to dealing with a relationship with yourself as well as another. For our partners it is a huge task for them to be both a carer and a partner, and it is hard for them to manage both roles in a way that meets our needs, and their own! Her post 'A Maze Inside a Minefield: Relationships and BPD' is a beautiful view into her life as trying to work her relationship in with a mental illness that seems to run everything and make everything more difficult.

Sandy

Being in a committed relationship can be challenging all on its own. When you throw a mental illness into the mix, overcoming these challenges can seem impossible. Mental illness magnifies the weak points, stretches boundaries, intensifies emotions, and leaves both of us wondering just what the hell went wrong. (My husband calls it a maze inside a minefield.)

I am trying to earn back my husband’s trust after my last suicide attempt. Since then, everything has been different. I often feel like I’m being treated like a mental patient instead of a partner, and my husband thinks he’s just being supportive and trying to give me breaks. I think he may have gotten used to the caretaker role when I was at my sickest, and now neither one of us knows how to get back to that place before it happened.

Neither one of us now knows how to just be with each other anymore. And that’s a problem.

It’s hard for me to separate what is my mental illness and what is not. How do I know when I’m overreacting because of my BPD, or whether my feelings are valid given the situation? What boundaries are appropriate between us? I feel bad that he doesn’t always know what will help me, and sometimes when he tries it backfires. He is supportive and knows a lot about mental illness, but it doesn’t always make things any easier for us.

And just because I have BPD and all that that entails (black and white thinking, intense emotions, fear of attachment) does not mean I cannot have my own expectations when it comes to my relationship. Everything does not have to be blamed on my mental illness, right?

This doesn’t mean I get a free pass to go crazy, either. My husband gets to have expectations of his own, which means I get to keep working hard in recovery and keep my symptoms in check.

Because that’s what you do when you love someone, you strive to be better.

I don’t have all the answers. All we can do is keep working toward having a better relationship. While the challenges won’t go away, it is good to remember that challenges are a normal part of every relationship, whether or not someone has a mental illness. What matters is how you choose to deal with them.

First Flight Crew - Disability and Dance

Hi everyone,

I couldn't resist but to share this with you as I think it is quite an amazing and fabulous thing to recognise. The First Flight Crew are a group of hip hoppers with disability. The crew is made up of seven unique individuals with so much talent in all things entertainment. The crew picture themselves as representing people with disability whilst also showing off their hip hop skills to a wide public audience.

The group was formed in late 2008 by the Accessible Arts Creative Programs Coordinator, Alison Richardson and Club Wild. The offer of four workshops grew to two fabulous tracks of dance with an accompanying music video clip. The tracks included 'The Wild Ones' and 'Music Makes Me Happy'.

After these great new performances the group were offered the opportunity to perform at the Beach Road Hotel as part of a hip hop night with interstate and international artists.

In 2009 most of the orginal group returned (with some newbies) to take part if a song creation workshop with Morganics, creating their first original song called Funky Guitar Style Noises. The Group, then called the Funkeze is now called the First Flight Crew.

They have some fabulous videos and great bios on the group members on their website.

What I love about this group is the fact that these individuals have not been limited by their disability and have really shown the world what they are made of through creative dance and entertainment. Their story is all about overcoming a challenge but at the same time representing people with disability in creative arts.

I always keep my eyes peeled for amazing stories of individuals and groups. If I've missed anything that should be mentioned or you have a story to tell, let me know! It helps to share your experiences because you will find that they are shared by many. Email prmedia@ideas.org.au to share your story on the blog.

Introducing Guest Blogger - Sandy

I came across the wonderful words of Sandy when I was looking for some inspiration and great experience for this blog. Sandy has her own blog 'A Glass Half Shattered' and the experiences she talks about are like nothing that I have read before. The way that she describes her experiences with Borderline Personality Disorder are really quite extraordinary. I was not aware that one could really portray such emotions and live their experience through words. I promptly invited her to come across to this blog for a special posting, and I think that the readers will not be disapointed. I'd like to introduce you to Sandy and suggest that you go and check out her blog yourself!

I started writing A Glass Half Shattered because I wanted to humanize mental illness and help shatter the stigma that surrounds it. That is why I chose to use my real name and face on my blog, even though my sister and mother don’t always like what I have to say.


Writing is a way to help me cope with having borderline personality disorder (BPD). Putting my thoughts down in my blog helps keep them from getting lost inside my head. When I am anxious or my mind is racing, writing always helps to calm me down. I believe everyone needs a positive outlet when it comes to managing this disorder. Writing definitely helps to keep me away from the negative ones.

I was diagnosed with BPD this year, following years of misdiagnosis and repeated hospitalizations for depression and suicide attempts. I spent years self-harming, self-medicating with alcohol and drugs, and trapped in the cycles of anorexia and bulimia. I often dissociated and was disconnected from my feelings. I would rather feel nothing than deal with the traumas from my past. Unfortunately, that meant I was shut off from the good feelings as well.


I had no stable sense of identity, which left me empty inside. Since I had no idea who I was, other people became my mirror on how to be. My relationships were often co-dependent, as I feared abandonment and being alone.

Dialectical Behavioral Therapy (DBT), a new treatment for BPD developed by Dr. Marsha Linehan, has changed all that. DBT helps me learn to tolerate distress, regulate my emotions, and have healthier interactions with other people. So far, it’s working. The urges to self-sabotage through drinking, self-harm, and eating disorders have lessened and been replaced with skills to help me manage my life.

I am now a wife and mother and have a stable marriage and career as a paralegal. While I still have days where I dissociate and want nothing to do with myself, things are getting better. I believe recovery is a process, not a place. I am slowly re-connecting to my feelings and myself, which is helping me better connect to my family. Attachment, which has always been hard for me, is a risk I am starting to take. I am also starting to form my own identity and am becoming more assertive in expressing my true self.

I believe that a BPD diagnosis does not have to ruin your life. Sure there are the Glen-Close-in-Fatal-Attraction stereotypes, the Girl, Interrupted craze, and doctors who throw up their hands at hearing the word “borderline.” But we can overcome these stigmas by telling the truth about what it is really like to have BPD. I believe all of us have a story about what it is like to develop, live with, and recover from mental illness, and those stories need to be told. It is the only way to shatter the stigma often associated with these illnesses, and it just may help inspire some people along the way.