Celebrating World CP Day around the world

Source: https://accessabilityaustralia.com/2020/10/06/celebrating-world-cerebral-palsy-day/?fbclid=IwAR2CNQPnc8u5GQy0rVuIsb0RSKC7IORiseOxDerpwIT92nOlBQckAGW8bYw

Hey everybody!

I’m Hannah and I’m a 21-year-old writer with a physical disability called Cerebral Palsy (CP for short). CP affects my fine and gross motor skills so I struggle with things like walking, balance, doing up the buttons on a coat or using a knife and fork, for example. As a result of all this, I use either a manual or motorised wheelchair to navigate the world, which as I’m sure you can imagine isn’t always easy. I’m stoked to be able to share my voice with you and expand my platform all because of a piece I recently wrote for ABC Life on ableism and how you as able-bodied people can be better allies to those of us in the disabled community.

Hannah celebrating World CP Day in Australia
Source: https://accessabilityaustralia.com/2020/10/06/celebrating-world-cerebral-palsy-day/?fbclid=IwAR2CNQPnc8u5GQy0rVuIsb0RSKC7IORiseOxDerpwIT92nOlBQckAGW8bYw

There’s one specific aspect of that process of allyship, which I touched on in the article, that I want to unpack further here. That is the desperate need for improvement and innovation in accessibility at all levels, from your local community area to hotspots of international travel (when travelling is of course a safe option again). Even though in 2020, we are obviously in the most scientific and technologically advanced time in history which lends itself to also being the most accessible and injustice focused, we still have an incredibly long way to go before we reach anything resembling equal opportunities and freedom of movement in public spaces for people with disabilities.

Where we are right now is better than where we have been but to be blunt, it is still not good enough. People with disabilities deserve better. We deserve the right to move freely in this world without anxiety or a herculean amount of meticulous planning beforehand. All too often, we lose the chance for spontaneity because the world isn’t built for us to do that. Instead, it is built for uncertainty, embarrassment, maybe even feeling like you cause too much trouble.

When I go out somewhere, especially if it’s a new place I’ve never been before, there are about a million questions that run through my head. Questions that an able-bodied person never has to ask themselves or worry about.

These include: If I get on the train, will someone remember to help me off? It doesn’t happen very often but it has, where somebody has forgotten me and I’ve sailed past my stop, unable to do a thing because my wheels can’t cross the platform gap on their own. Once I leave the train station, is the path even? If it’s not, that means I will be heavily jolted around as wheelchairs tend to have little to no suspension, which is painful and nerve-wracking for me. Do the paths in the area end in kerbs or gutters? If they end in gutters and I’m travelling independently, there is no way I can cross safely because my motorised wheelchair can’t handle the steep and sudden drop of pavement to road.

What about if I’m in the car, is there a disabled parking space? If there isn’t, is the area between the car door and the outside world wide enough for my mum and I to expertly shimmy our way through? And those are only the questions that come BEFORE I get to where I’m going. Once I’m there, it’s a whole different ball game.

Are there steps or a ramp leading up to the door? Are the doorways wide enough for my wheelchair to fit through? If they are, will I be stuck at the front because the rest of the space is too narrow? Is there a lift or more stairs? Can the lift be operated by me, independently? Is there an accessible bathroom and/or a change facility available? If I’m going to be sitting at a table, can I get into it or will I have to do that awkward lean forward where I’m still not quite close enough?

These are the kind of questions I’d love to have the answer to ahead of time because juggling them as constant unknowns are exhausting and deeply draining. Sometimes, it makes it hard to think of going to new places as fun or enjoyable because there’s so much stress and anxiety accumulated beforehand about accessibility. When you consider how many questions I just put on the page as just a handful of examples, I don’t think you’ll find it surprising that many disabled people struggle to go out. When you have to fight so hard just to get in the door, it can seem easier not to try.

But that’s not what I want for myself or anyone else so I’m asking you to do better. Include us in your potential audience/customers when you’re designing a space. Make your accessibility information freely available online so people can scope things out beforehand and reduce that anxiety. And if something isn’t accessible, just say so. Don’t pretend it is and then get flustered when we show up. Demand better of your employers.

Hannah celebrating World CP Day in Australia
Source: https://accessabilityaustralia.com/2020/10/06/celebrating-world-cerebral-palsy-day/?fbclid=IwAR2CNQPnc8u5GQy0rVuIsb0RSKC7IORiseOxDerpwIT92nOlBQckAGW8bYw

I want to make big changes to the accessibility of the world but I can’t do it alone. Will you help me?

You can read Hannah’s writing piece for ABC Life on ableism here

You can find Hannah online @hannah_diviney (Twitter) or @hannahthewildflower (Instagram).

Thank you for celebrating world CP Day 2020! Join POPS Kids in sharing your story!

Make Your Mark on World CP Day 2020!

All around the world, people and communities have had to adapt to big changes caused by COVID-19. People with cerebral palsy have mastered dealing with change, breaking down barriers, and coming up with creative solutions their whole lives. This year, since we can’t hold physical events around the globe, join the CP community in MAKE YOUR MARK! Think of some of the ways you (or someone you know) have created something, set and reached a goal, or come up with a new way to participate in an activity that felt inaccessible at first. When you share this story, you’ll Make Your Mark. 

On October 6 share a post, video, or story showing:

  • What you accomplished 
  • How you made it happen
  • How it affected you, and how your achievement or solution can impact or influence others with cerebral palsy

Make sure you tag @worldcpday and use the hasgtags #WorldCPDay and #CPMakeYourMark

Climb for Kids!

Saskia Kramer (the Program Director for BOOST Conductive Education run by UCP North Bay) along with Michael Wong and Colorado Reed summited Mt. Everest to raise money and awareness for Cerebral Palsy!
They climbed and descended 29,029 feet in a single day in Redwood Regional Park in Oakland, CA!

Their goal is to raise $2,902.90 (the height of Mt. Everest) to support the incredible work of BOOST Conductive Education program run by United Cerebral Palsy of North Bay, who was not been able to do their annual fundraiser (90% of their annual donations) due to COVID-19.

They surpassed their goal and raised over $5000! Congratulations and thank you for this wonderful effort!

The BOOST program serves children and young adults with Cerebral Palsy (quadriplegia, hemiplegia, diplegia, ataxia, athetosis), spina bifida, paraplegia, Multiplex Sclerosis, Parkinson’s, stroke, head injuries, and other brain-based motor delays.

Learn more about this incredible organization here: https://ucpnb.org/boost-conductive-education/

Boost Camp conquers distant learning

We decided to check in and see how things are going with some our favorite students in Boost Camp! Distant learning is hard for everyone, especially children with mobile disabilities, but Saskia Kramer has done an amazing job at lining up an enriching program for her students, allowing them to grow and succeed while at home!

“We have been in distance learning since March 16th. We have daily contact with our students over FaceTime and Zoom. The kids have their own individualized daily routine/schedule and are encouraged to take part in at least 4 classes a day (out of about 8 to choose from) on top of extracurricular activities that are posted on the Google Classroom. We have movement program sessions that focus on mobility, math, language arts, science, dance, fine motor, arts & crafts, lunch groups, read alouds and afternoon meetings.
It has been eye opening in terms of what technology is out there and it is absolutely a different way of teaching. We definitely miss being in a single classroom and seeing each other in person, nothing can ever replace that. While distance learning is much harder on parents, interestingly, we have experienced that they all became even more engaged in their child’s education then before. They have done an amazing job being there for their kids and working full time. The bond between siblings is also much stronger and the everyday stress of getting to school, then to therapy is now replaced with a slower paced daily routine. I am proud of my students, they have adjusted very well to this “new world” and they keep surprising us with their abilities.
We are getting ready for our BOOST Summer Intensive that will be held over Zoom for four weeks. We are excited to see each other, connect and continue to work towards a life without limits. We really hope to be back to in person instruction soon (fingers crossed) and to be able hug our kids again soon. 

Thanks to Boost Camp and Saskia, for letting us know how these wonderful students are doing during lockdown. We hope to see their smiling faces soon too!

A wonderful end to Giving Tuesday!

At UCP of the North Bay, they celebrated #givingtuesday and collected funds to get tablets for their staff to help support distant learning.

The #GivingTuesdayNow Campaign raised more than $18,000 for the purchase of Amazon Fire Tablets to be given to participants to stay connected during COIVD-19 Shelter In Place.
As part of that celebration Domenic Bianco shared his original song, “Puzzle Piece,” to remind us all during these times that we are all just pieces in one big global puzzle.

#GivingTuesdayNow, Domenic Bianco "Puzzle Piece"

Friday, June 5th, we celebrated the successful end to our #GivingTuesdayNow Campaign that raised more than $18,000 for the purchase of Amazon.com Fire Tablets to be given to our participants to stay connected during COIVD-19 Shelter In Place.As part of that celebration, Domenic Bianco shared his original song, "Puzzle Piece," to remind us all during these times that we are all just pieces in one big global puzzle. The SoulShake http://ucpnb.org

Posted by United Cerebral Palsy of the North Bay on Monday, 15 June 2020


Support our friends at UCP of the North Bay on #GivingTuesday !

More about UCPNB’s campaign:

#GivingTuesdayNow is a global day of giving and unity that will take place on May 5, 2020, as an emergency response to the unprecedented need caused by COVID-19.

Please join United Cerebral Palsy of the North Bay as we come together to create a wave of generosity, citizen engagement, action from business and philanthropy, and support for communities around the world.

Staying connected is a key ingredient to navigating these unusual times. While many of our participants, staff and their families and friends have embraced technology and are able to “see” each other through platforms such as “Zoom,” there are some who go without. Our goal is to get the technology into everyone’s hands to be able to stay connected. To date, UCP of the North Bay has conducted hundreds of online classes, meetings, and “check-ins” with a large percentage of our network across four counties in the North Bay, but there are still some who cannot connect.

UCP of the North Bay’s #GivingTuesdayNow campaign aims to purchase a minimum of 300 Amazon Fire Tablets to distribute within our network to help our community stay connected! These tablets can be purchased for just $60 each.

Our organization has decided to extend the #GivingTuesdayNow campaign from May 5 to May 31st.  For each $60 gift we will use to purchase an Amazon Fire Tablet for our network, you will receive one “Donation With a Chance”entry into our raffle for a “Post-Pandemic Getaway.” The drawing will take place June 5th, live and online.

The #PostPandemicGetaway is a trip valued at approximately $2,000 and includes airfare, lodging and spending money!

Please help by making your $60 donation(s) today and spreading the word to friends and family to do the same!