Monday, August 28, 2017

Dear Everybody

Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) recently launched a national public awareness movement and campaign called ‘Dear Everybody’ focused on challenging and breaking down disability stigma and stereotypes. It will focus on major issues such as employment, bullying, friendship, education, and health care providing tools that will educate the public about the role they play in building an inclusive and equitable society that includes young Canadians with disabilities.

While kids and young adults with disabilities have the same basic human needs as other kids and young adults – such as fairness, inclusion, and economic security – statistics show that barriers caused by stigma prevent those needs from being met.

"As a kids’ hospital, we feel strongly that you can’t care for a child’s health without thinking about their future," says Julia Hanigsberg, president and CEO of Holland Bloorview. "We have an important role to change minds about disability. We see the strengths that come from a more inclusive and accessible society. We believe in a world of no boundaries, and it’s time to build it together as allies."

In Canada, there are at least 400,000 children and youth (ages 0 to 24) with a disability, including physical, intellectual, cognitive, and many others. Many forms of disability are invisible but equally stigmatized. Many people with disabilities routinely experience staring, whispers, name-calling, social exclusion, bullying, and outright discrimination – otherwise known as stigma.

The impact of stigma is sobering:
  •  53 per cent of kids with a disability have zero or only one close friend. They also have lower participation rates in camps, volunteer work, recreational activities, and part-time/summer jobs.
  • Kids with disabilities are two to three times more likely to be bullied than kids without disabilities.
  • Only 49 per cent of Canadians with disabilities aged 25 to 64 are employed compared to 79 per cent for Canadians without a disability.
  • One-third of people with disabilities say they have been denied a job because of their disability. Likewise, 24 per cent say they have been denied a job interview.
  • 25 per cent of kids with disabilities under 15 in Canada have unmet educational needs.
  • 24 per cent of kids with disabilities live in poverty compared to 15 per cent without disabilities.

"Attitudes and stigma create actions that shape our world – it’s time to break the cycle and enable everyone to exercise the rights and opportunities they deserve," says Hanigsberg.

Dear Everybody targets disability and stigma by putting the voices of kids and young adults with disabilities front and centre.

The advertising campaign features an open letter written by kids and young adults with disabilities that answers questions that aren’t being asked and brings individuals face to face with their own biases. The website will be a source of information and resources, including a position paper with recommendations for teachers, employers, health-care providers, allies, and others that can be shared, start conversations, and end stigma.

The letter starts with "Dear Everybody, We live with our disabilities every day. You might think that’s the biggest problem but it isn’t. The biggest problem is the world that’s full of stigma around living with a disability. People are afraid to offend so they avoid asking questions or making conversation. But we need to get these answers out there, we need to start talking. So we’re putting it all out there. Every line of our letter helps people understand our lives, puts a little information into our world and takes a little stigma out of it." It goes on to include some straight to the point tips, like "Talking to someone with a disability like they’re a baby is rude, unless they’re a baby." and "If being around someone with a disability makes you feel uncomfortable, you aren’t around someone with a disability enough."
Click HERE to read and share the full letter!

"What I hope for is a world without stigma, without inequality, and with an increased understanding about disability," says 17-year old Maddy Hearne, who has sustained six brain injuries and faced stigma from her peers. "I support the movement and want everyone – kids and young adults like me – to have unlimited opportunities in every part of their life. Dear Everybody is important because for the first time, our voices are front and centre and answering questions that break down stigma. Everyone can, and should be, treated equally regardless of their disability."

The Dear Everybody campaign is the beginning of a five-year effort to change attitudes and behaviours in support of kids and young adults with disabilities, and I am all for that!

For more info, visit 

Sunday, August 20, 2017

Kaiden's Wish

On Saturday, Andrew and I took our two boys to the 7th annual Terra Nova Motors TruXtravaGanza!

The TruXtravaGanza is a fundraiser that Terra Nova Motors hosts every year to raise money for the Children's Wish Foundation. The event features street trucks, classic trucks, off road trucks and ATVs navigating a full size obstacle course and mud pit. Let's call it what it is - grown men playing with their toys in the dirt! It's awesome, and it's all for a great cause!

This year's event raised money to go towards granting the most heartfelt Wish of a very special little boy named Kaiden.

In January of 2016, at just 3 years old, Kaiden was diagnosed with Stage 4 Neuroblastoma - a type of childhood cancer that starts in immature or developing nerve cells.

Kaiden's mom, Danielle says, "We were two months trying to figure out why his legs were hurting. He was in so much pain he could hardly walk. He was misdiagnosed with juvenile arthritis. Kaiden had six rounds of chemotherapy. He spent his 4th birthday having stem cells harvested at the Sick Kids hospital in Toronto. He had surgery to insert a G-tube into his stomach to allow us to provide him with the nutrition he needed, as he had no appetite and he was nauseous from the treatments. Kaiden had surgery to remove one of his adrenal glands - the primary area of disease. Kaiden went to Sick Kids hospital in Toronto again, where he received high dose chemo before he had a stem cell transplant. We were there about a month before we were able to come home. After that, we returned to the Janeway for 12 radiation treatments on his leg and abdomen, where he had to be put to sleep each day for those. We finished treatment off with 6 rounds of immunotherapy."

The good news is that Kaiden is now in remission! His recent CT scan and bone marrow tests were all clear, and his echocardiogram and EKG showed normal heart function! Kaiden will be monitored closely, but he can now resume his life as a healthy and happy little boy!

At the TruXtravaGanza on Saturday, Terra Nova Motors presented Kaiden with his Wish package that included tickets for the Disney Pop Century Resort and a Disney Dream Cruise! He and his family are leaving for Florida next week! So exciting! Have a wonderful time, you guys!!

We had a great day at the TruXtravaGanza, watching some insane drivers tear it up in the mud, getting stuck in the pits and attempting to climb over massive tires and other obstacles. It was impressive, I have to admit. I didn't think I was, but it turns out I'm a fan of truck shows!

This little one loved all of the noise and excitement! 

Here are some action shots taken by Matthew Myler. Check out more of his photos from the TruXtravaGanza HERE.

Thank you to Terra Nova Motors for your incredible support of the Children's Wish Foundation!
If your workplace would like to know how you can grant a wish through the #HeroesChallengeNL, call Dave at 709-739-9474 or see their website for more details at

Tuesday, August 15, 2017

Adventures with Serial Casting

Brennen had botox injections a couple of weeks ago, which I wrote about HERE.

The botox helped to reduce the tone and muscle tightness in his left leg, which had become a bit of an issue and was causing his legs to pull to one side, putting his hip at risk of dislocating (once again). 

Since then, he has been undergoing serial casting to hold and stretch the muscles in his leg, and to correct a turn in his foot that had become quite pronounced. The casts hold his foot and leg in a position where the muscle has a slight amount of tension, causing it to adjust and become longer and more flexible. With serial casting, a new cast is applied each week, with the angle being changed slightly to stretch the muscles and move the joint a little closer to the correct position.

We know that Brennen will never walk or bear weight through his legs, but we want to do everything we can to promote his highest level of function. Serial casting will improve his passive range of motion, and will decrease the risk of him needing further corrective surgeries down the road.

He had one week with the purple cast (that he picked out himself!), then a second week with a shiny green cast. Other than scratching up his 'free' leg, the casts don't seem to bother him at all! We have been out on the go and Brennen has been quite happy!

We took a walk around Quidi Vidi the other day, and just had to stop for lunch at the new QVFC - Quidi Vidi Fish and Chips truck! 
Oh my God, you guys. The "Iceberg Beer Battered Cod" is to die for!!

So, we are pretty sure this will be the last week of casting. Brennen will get his cast off on Wednesday, and have a new AFO made to hold his foot in an aligned position, and to keep the flexibility that was gained by serial casting. We also have a fancy new hip abduction pillow that he uses at night to keep his legs apart. Fun stuff.

I have to say that even with all of the appointments and casts and botox and seizures, and everything else that comes along with having a child with a complex disability, we have been enjoying the summer, and making the most of the time we have to spend together before Brennen goes back to school in a couple of weeks! It's been nice to relax a little bit these past few days. We get so caught up in the craziness of our lives - the constant pressures, the demands of our children, and the accumulation of many little stresses that can make things start to seem really hard and out of control, it's easy to forget that much of life is actually not so hard! It's days like this one, spent enjoying the sunshine and warm temperatures and a leisurely stroll around the most beautiful neighbourhood that brings us a welcome reminder of that balance - the good and the ugly, the hard and the easy. It's a complicated mix, and the weight of everything in life is constantly shifting. We are in constant motion, tipping the scales and readjusting, but the love we feel for our family is an overpowering force and things always have a way of balancing out in the end.

There are so many fulfilling moments in between the madness, and here is the truth: I love my life because it has an abundance of both.

Monday, August 7, 2017

NL Folk Festival

This past weekend, we attended the 41st Annual Newfoundland & Labrador Folk Festival in Bannerman Park.

The NL Folk Festival is growing every year, which means that the need for accessible services is growing as well. This was the Festival's fourth year with a dedicated Inclusion Crew, and the accessibility options have improved as a result. The organizers are pleased to continue working towards making this annual event more inclusive and accessible to all patrons. They proudly partnered with InclusionNL to come up with a comprehensive Inclusion Plan for the Festival.

The Inclusion Plan included:
  • Inclusion Crew volunteers – In addition to the general team of Folk Festival volunteers (all of whom were offered inclusion sensitivity training in advance of the festival), the Inclusion Crew were there to assist in any way they could for attendees to be able to access and enjoy all aspects of the Festival.
  • Designated accessible blue zone parking spots in the Bannerman Park parking lot with city-issued Blue Zone parking passes.
  • Free entrance to attendant (with City-issued attendant’s pass) accompanied by a ticket-holder.
  • Listening devices – The Canadian Hard of Hearing Association loaned the Festival listening devices.
  • Spare wheelchairs – Organizers tried their best to make the festival site wheelchair-friendly and were pleased to offer spare wheelchairs for short-term loan.
  • Designated blue zones in the audience to provide easy access for persons with a mobility disability.
  • Large-print and braille schedules for each session (available at the Inclusion Tent)
  • Accessible portable washrooms throughout the park.
  • Quiet zone – A safe space for people who may be feeling overwhelmed to sit out of the sun, away from the crowds. The hope was that this additional measure would enable more people to come to the event who would have otherwise stayed away. This space was conveniently located in the same space as the Inclusion Tent.

Access Advisor, a program of Tourism Quality Assurance that validates and assigns designation levels of accessibility, officially designated the Newfoundland & Labrador Folk Festival as Fully Accessible, and Hearing and Sight Accessible. These designations signify the Newfoundland and Labrador Folk Arts Society's commitment to enhancing accessibility for all persons, regardless of ability.

"The Newfoundland & Labrador Folk Festival is a celebration of community, and the inclusion measures allow people to get to know their diverse community, and encourages meaningful conversations that explore, embrace and celebrate the diversity of our shared human experience. It's also an opportunity to expand outreach, and enhance community engagement in order to stay relevant to our growing and ever diversifying audiences. The Festival also continues to be one of the most inclusive and accessible festivals in the country for seniors and persons with disabilities."

The NL Folk Festival truly is for the whole community, and everyone is welcome. Andrew and Brennen and I had a really great time checking out the various stages and entertainment line-up, including Amelia Curran and the Stella's Circle Inclusion Choir, who received a standing ovation for their heartfelt performance of 'Be the Change'. We were so happy to be able to attend the festival and not have to worry about accessibility, parking, seating, or other barriers that make outings difficult - sometimes impossible - for families like mine. The event grounds were easy for us to navigate, and there were plenty of volunteers on hand to assist us if we had any questions or concerns.

All music festivals should be accessible to anyone who wants to attend, regardless of ability. Access to the music, the emotions, and the feelings associated with coming together as a community at a live, outdoor event like this one is a wonderful part of the human experience, and having an inclusion plan in place so that everyone can participate is key to a successful festival. Organizers of this year's event have clearly demonstrated how access and inclusion can be at the core of creative planning, and how this can benefit the experience of all attendees.

Our community has made great strides in promoting inclusion and accessibility, and the Newfoundland and Labrador Folk Festival is raising the standards, embracing the needs of everybody and celebrating the great range of abilities that make us all unique. Seriously, what better way to bring people together than through music? It is a unifying force that cares not about disability, but instead allows us to share a common experience while rising above any discriminatory factors.

John Denver said, "Music does bring people together. It allows us to experience the same emotions. People everywhere are the same in heart and spirit. No matter what language we speak, what color we are, the form of our politics or the expression of our love and our faith, music proves: We are the same."

Thanks to Alick Tsui for letting me share his beautiful photos!

"The Newfoundland & Labrador Folk Festival showcases the skill, talent and ingenuity of some of the finest artists in our province, and everyone should have a chance to enjoy their magic. Our continuing work with our partner InclusionNL is aimed at offering a great experience to anyone and everyone who wants to experience the Festival." - John Drover, President of the Newfoundland & Labrador Folk Arts Society

"We applaud the Festival organizers and volunteers for their continued commitment to inclusion. This is the third year of our involvement with Festival organizers and we are proud of our expanded outreach within the community to help diversify audiences at the Festival, ensuring that many accessible features are offered again this year." - Kathy Hawkins, Program Manager for InclusionNL

The illustration above was created by Caroline Clarke and prints are available to purchase HERE
One good reason to buy a poster? $5 from every sale will be donated to the Newfoundland and Labrador Folk Arts Society!

Our thanks and appreciation go out to the Festival organizers and Inclusion NL, who played a large part in making this event as successful as it was. We had a fabulous weekend celebrating the rich spirit and culture of Newfoundland and Labrador - a place that we are proud to call home.