It’s been a big year for CPActive, with lots of events and the launch of our Blaze the Trail campaign. Three of our Champions- Ben Andrews, Meret Hassanen and Tash Garritty recap what happened in 2022.
By Ben Andrews:
First full year of CPActive done & dusted. People with a disability face barriers everyday, myself included. Breaking down these barriers is the main ambition of CPActive & their Champions. As someone who’s had to deal with these barriers in the past I know what it’s like for other people facing the same hurdles.
For this reason, CPActive have hosted & facilitated a number of events over the past year to help raise the voices of people with cerebral palsy & other related conditions. Even though I haven’t been able to attend some of these events due to work commitments I’ve attended those events that I can fit in with work.
One of the virtual events I attended was the three Youth Labs which aimed to design & develop a list of guidelines to help make school, uni & the workforce more inclusive, accessible & accepting. The labs also focused on exercising rights in terms of education, funding & the workforce as well as how networking can help in the journey of finding employment. These labs led to the launch of the Blaze the Trail campaign in Barangaroo.
The campaign focused on breaking down barriers & creating accessible pathways from school to work for people with CP. NSW Shadow Minister for Disability, Kate Washington, attended to give feedback & hear our experiences in the lead up to the NSW State Election in March next year.
Another event held this year was the Town Hall takeover with Dylan Alcott. This involved a panel of CPActivists who spoke about their lived experiences of social inclusion at school, how they’ve had to advocate for themselves as well as using their networks to find employment.
We also attended the NDIS Jobs & Skills Summit in Canberra. Also in attendance were Minister for the NDIS Bill Shorten & Chair of the NDIS Joint Standing Committee Libby Coker. We even met with Prime Minister Anthony Albanese at a special summit dinner afterwards to discuss the current operations & advising the federal government on how to support those living with a disability into the workforce. The main aim of the summit was to ensure the NDIS is truly meeting the needs of people with a disability.
All up I’m impressed with what we’ve been able to achieve & the people we’ve been able to reach out to & connect with. I’m excited to see our campaign grow next year while I’m hoping to be able to attend more events next year while still being able to balance this with work.
By Meret Hassanen:
In March, a handful of young people with Cerebral Palsy came together and formed an advocacy group. We didn’t know what we were setting out to achieve but called ourselves CPActive NextGen for the time being.
There were many Zoom meetings and WhatsApp threads discussing issues important to us. It got to a point where if you weren’t on social media or emails for a few days, there was major catch up to be done! And so, here we were, in the midst of rigorous discussion, but still not sure of next steps or an outcome.
Our first official event was a Town Hall takeover in June, where our panel of CPActive Champions spoke about their lived experiences of social inclusion at school, how they have had to advocate for themselves and the power of networking to get into the workforce.
After many evening Zooms, we held three online focus sessions on Inclusive Education, Exercising Your Rights and The Power of Networking. During each session, CPActive Champions spoke about their experience and facilitated breakout rooms where groups discussed what the world would look like if they had all the supports they needed. These discussions would later be used to form three campaign asks for the Blaze the Trail campaign.
In August, myself and Declan Lee went to Canberra to attend the NDIS Jobs and Skills Forum and represent our group at Federal Parliament! After a welcome dinner, where Prime Minister Anthony Albanese made an appearance, we attended the day-long forum to give minister for the NDIS, Bill Shorten, asks to take to the Federal Government’s Jobs and Skills Forum. With the day moderated by disability rights campaigner Elly Desmarchelier, we facilitated breakout groups to come up with achievable asks that the Minister could take to the summit. I also joined Elly and other working professionals with disability on a panel where she discussed starting in the media industry and the impact networking has on her work.
The year culminated with an official campaign launch on 23 November. The campaign: Blaze the Trail! Held at Barangaroo, Sydney, it addressed a group of around 40, made up of people from industry and government – timely considering the upcoming NSW State Election! The event, like every one that came before, was run entirely by the CPActive Champions. There were seven speakers in total who spoke to our three campaign asks, sharing personal stories to demonstrate the importance and timeliness of these asks. The NSW Shadow Minister for Disability, Kate Washington, responded to our asks and congratulated us for the work done thus far!
The formalities ended with a chance to network with everyone who attended, but the day was not over for us! A social catch up afterwards allowed everyone to celebrate the achievements of the year and the friendships made along the way!
Congratulations to the entire CPActive community for a fantastic 2022 and here’s to an even bigger and better 2023!
By Tash Garritty:
When CPActive Next Gen was first created earlier this year, I was asked to be one of its initial members. This is my first attempt at disability advocacy as part of a group in my adult life. I am proud to say there have been many meaningful achievements which both members of the community and the CPActive organisers had a hand in. The goals of this group are simple: push and help provide for an inclusive community particularly for young people with a disability. One of the first big activities developed was Youth Lab workshops. This was a series of three zoom group meetings made up of the CPActive Champions and members of the community with disability. The purpose of these groups was to determine the main focal points for CPActive in terms of creating meaningful change in three areas: work, education and disability supports.
The first of these workshops was the most memorable for me as the current Australian of the year Dylan Alcott helped run the session which was focused on disability supports, where many of the issues the community were experiencing with government systems were discussed. It was the workshop on the education system that I found the most inspirational and hopeful. When asked to devise an “ideal school” we all unanimously agreed that technology should ideally be used in places of scribes so that the students feel they have complete ownership and control over their own work. The continual need for proving and justifying the need for adjustments was also taken care of by a smart AI system that constantly evaluated the adjustments it automatically set based on the marks the students had gotten and any medical documents in its record. The amount of passion expressed by all the attendees of this workshop led the workshop members to make all three levels of the educational system in Australia fully academically accessible its primary starting goal. Making work and the workplace accessible for all is also on the cards further down the track but to begin with it was decided to focus on one area to make sure change was implemented.
Though consultation with Teigan Buchers over several weeks, we officially decided on a name for the group and a logo as well as increasing our presence and reach though social media and other platforms. For our Blaze the Trail campaign launch, we decided on three main points to present to the politicians and other stakeholders that were present in the room. They are: 1.Clear and enforceable guidelines for support in exams at all levels of education. 2 pathways for people with a disability to enter the teaching work force. 3 A state wide initiative to support the development of pathways for students with a disability to enter into large business government and other organisations.
I’m proud to be working with such an invested, engaged and passionate group. We all respect each other and regularly bounce and build off each idea put forward by a group member. At its core, CPActive is a group of friends that are all equally passionate to see positive change in both societal attitudes and legislative decisions effecting our community. All for us are willing to take actions to see this happen and when multiplied together I feel like this group movement is unstoppable. It’s only a matter of time before our small group starts expanding and has a real world impact on the lives of people with a disability. I know we are not alone in this movement and neither are you who are reading this. Just remember that whenever you feel isolated and helpless that if you speak up, your voice will be heard by someone. If we all combine our voices we can all help each other to make meaningful change.
|On October 14th, CPActive hosted the World Cerebral Palsy Day Awards! It was amazing to come together and celebrate the creativity and innovation of our global community, and it was pretty cool to be joined by some red-carpet superstars. |
We were joined by Hollywood superstar RJ Mitte, who reflected “If we provide accessibility to everyone, we can grow as a community better – and I think that’s why we’re all here today is to help our community grow stronger.”
We also had Riley Saban join us, who is a tech entrepreneur and co-founder of PolySpine. Riley told us “Technology invites all people to create, learn, and communicate, as most technology now has acknowledged the importance of difference by including accessibility options. This allows inclusion and will create the most inclusive society we’ve been part of so far.”
And three-time Paralympian Ben Tudhope joined us too! “I’m actually in awe of everyone here… it just shows what we can do and what we can achieve in the future.”
We also announced the winner of our World CP Day Innovation Award which was Mothers’ Connection by Rana Zarzour from Lebanon! Rana’s idea rested on the need to develop and use sensor technology to help indicate pain and discomfort for individuals unable to communicate this.
With more than 700 entries, we couldn’t help but also choose a runner-up. We recognized Arnie Slater from the USA who submitted an idea for a self-generating power wheelchair.
Congratulations to Rana, Arnie, and the hundreds of innovators from across the globe.
If you couldn’t make it – don’t worry! You can check out our Facebook live here.
Or watch the highlights video here.
If you would like to find out more about some of those amazing entries from the World Cerebral Palsy Day competition, you can head over to the millions of reasons website here.
Over September 1st and 2nd, 140 representatives from business, unions, industry and government came together in Canberra for the Jobs and Skills Summit.
Disability rights campaigner and proud friend of CPActive Elly Desmarchelier addressed the summit, putting businesses on notice that they need to do more to employ people with disability while holding the government to account to rebuild all systems that discriminate against PwD including in the workplace.
‘I’m not here to ask you to give people with disability a chance, I’m demanding you give people with disability a chance.
“What I’m here to give you are the solutions. These are the solutions that people with disability identified at the NDIS Jobs and Skills Summit.
“Number one, we want all organisations, business, government agencies whose principal function is to work with disabled people, to employ at least 15 per cent of their workforce to be disabled people.
“Not only will that create jobs for people with disabilities but that will mean the programs, the products, the services that are given to us are actually going to be informed by our lived experience,” Elly said.
Earlier, the summit heard from Australian of the Year Dylan Alcott, who recently co-hosted a CPActive virtual Town Hall with Elly.
Dylan used his address to the summit to also call on employers to hire more people with disabilities, saying only half of the 4.5 million people in Australia with a disability are enrolled in the workforce.
He also told the summit that PwD should be offered pathways to becoming leaders, because not only do we want jobs and careers but we want a leadership position.
Sign up to CPActive to hear about opportunities to get involved in leadership and advocacy, and make your voice part of the conversation.
We’re kicking off our next ‘Youth Lab’ virtual event on exercising your rights when it comes to funding, education and the workforce.
Be a part of CPActive’s NextGen in paving the way towards inclusivity in these areas; as well as connect with other young people with Cerebral Palsy and similar disabilities, share your experiences, and be part of co-designing a pilot advocacy and leadership program for 2023.
If you’re a young person (under 30) living with cerebral palsy or a similar disability – please fill out the registration form and we’ll be in touch with the event Zoom link.
The NDIS has been a gamechanger for people with cerebral palsy, empowering our community with freedom and choice. But the NDIS is at a crossroads – help us to ensure that the NDIS isn’t forgotten about this election day.
Join Cerebral Palsy Alliance for a fun, empowering day of community action on 28 April on the NSW Central Coast.
You can meet your local Federal election candidates, ask them how they’ll support people with disability and their families, and help make our voices heard.
You can also gather your friends and family, meet other people with lived experience of CP and enjoy a good chat over a cup of tea, and some musical entertainment, grab a lego fun pack and hear from a panel of speakers about their experiences.
DEFEND OUR NDIS: NATIONAL DAY OF ACTION COMMUNITY EVENT
10.00-11.30am. Thursday 28 April
Parkview Room, Central Coast Leagues Club, Gosford
Free event, RSVP here for catering: https://www.eventbrite.com/e/defend-our-ndis-national-day-of-action-community-tickets-310157668937
Help ensure the NDIS isn’t forgotten about on election day.
The CPActive team hopes to see you there!
Don’t live in Gosford or surrounds? There’ll be local events happening all over Australia on 28 April.
Look up an event near you here: https://everyaustraliancounts.com.au/election-events/
On 22nd March we had our first town hall for 2022 with some inspiring speakers talking about their priorities for the year ahead. Read their reflections. Be part of it and watch the highlights video now:
Here’s a quick re-cap of what our speakers had to say on the night:
Elly Desmarchelier on the Defend Our NDIS campaign:
“The NDIS… was not built by politicians, it was built by people with disability. That’s the scheme we want, that’s the scheme we are defending.”
“I realised the decisions that politicians make ultimately, as a disabled person, they impact my life more than a person without disability. My life is inherently more political. So I can just ignore that, or I can actually use my voice to have the biggest impact on my life.”
“The Defend Our NDIS campaign is… an opportunity, and it gives us a place in which we can channel that energy and that voice… to be more powerful together.”
Former Paralympian Tamsin Colley on her schooling career and the need for inclusive education:
“At my public high school, I was told that I would either be in the selective stream or receive support. And this was like outrageous, as they seemed like they have never heard of people with disabilities being smart and excelling in school before.”
“For Para-athletes, the Paralympic movement has really helped making young people with disabilities feel included and supported their sporting endeavours. It’s such a shame that school is so behind this.”
CPActive Champion Jerusha Mather on dating apps:
“I’ve heard many stories of people with disabilities being ghosted and not treated with respect [on dating apps]. It’s been going on for too long. I would really like to see some change. It is not good to ghost someone or discriminate against someone based on their disabilities… that’s why I started this petition.”
“Just put yourself out there and don’t be afraid… be yourself, be your real self, and don’t be afraid to give it a go because we all want love and we are all deserving of love, and love will come to us at the right time, and someone will love you for who you are.”
Aspiring ParaMatilda Holly Saunders on what she’s learned from team sports:
“Patience, a lot of patience. But especially the friendships that come from all the different people [you work with]. And it’s pretty much like a small little family, which is nice to have. So you always have each other’s backs, no matter what.”
Aspiring ParaMatilda Tahlia Blanshard on the best advice she’s received:
“I think the best advice that I was given, it sounds very cliche, but it was to not give up. I was just told to just keep doing it, no matter what anyone else says. If someone said ‘No, you can’t do that,’ that I should not listen to that person. I should just try my hardest at everything and it didn’t really matter what the result was, as long as I had fun along the way.
“And all the friends that I made are worth more than any trophy.”
We’d love to see you at our next event. Sign up for updates here now.
The employment rates for people with disability are unacceptably low in Australia. Less than 50% of people aged 15-64 years with disability are employed, compared to 80% of their peers without disability. This gap has not changed for decades.
Various projects, strategies and schemes have been implemented by federal and state governments. But despite this, Australia’s participation rate for people living with disability is on par with developing countries – and it needs to change.
Any strategy for inclusive employment needs to be based on the lived experiences of people with disability. That’s why Cerebral Palsy Alliance is conducting consultations with people living with CP and similar conditions to understand your employment journey.
Would you like to have your say? Email project officer Dula Hettiarachchi at email@example.com to express your interest!
The consultation will include questions about:
These consultations will shape CPA’s recommendations for how governments and employers can support people with disability to find and retain a fulfilling and successful career.
If you’d like to participate in this exciting project, please email project officer Dula Hettiarachchi at firstname.lastname@example.org. If you’re not comfortable speaking directly, that’s okay – feel free to send your thoughts in writing!
October 6 marked World CP Day, and people around the world took to social media to share Millions of Reasons to celebrate.
So many amazing stories and photos were shared from every corner of the world – both by people living with cerebral palsy, and from their nearest and dearest who seized the day to celebrate their loved ones.
There are too many to list, so here are just a few of our favourite moments from the day:
“I want to celebrate CP day by showing my twin girls play together, interacting with each other as individuals, they aren’t restricted by their differences when they are having a giggle.
“Their physical differences are significant, Avas CP is severe, but they both want to enjoy life. Being non verbal, the best way Ava communicates this young is by laughing so hard at her sisters antics most of the time. It’s heartwarming to watch.
“I am grateful to learn from Ava every day and be given an alternative perspective on life; a tough lesson in life which continues to make me stronger.”
“Emily’s reason – to challenge and change stereotypes people have about disabilities. She wants to see disability in the media, in Film and Television so that kids like her get to see themselves represented. She wants to show that having a disability is not a tragedy. She’s totally proud of who she is!”
“Happy World CP Day!! The world can prosper by celebrating the gift of ‘neuro-diversity’ that Cerebral Palsy brings. Each year, #WorldCPDay encourages people around the world to come together to celebrate and support those living with cerebral palsy. #MillionsofReasons“
“Aaryan’s reason for celebrating World Cerebral Palsy day is because he loves being part of a community of diverse individuals all doing great things in unique ways.
Aaryan wants perceptions of people with disabilities to improve and for people to not assume they know all about someone’s condition without asking questions first.”
What was your reason to celebrate World CP Day? Share it with the CPActive community in our new Facebook group!