Stella's Circle Sings for Canada

A couple of weeks ago, Andrew surprised me with plans for a date night that included tickets to see Stella’s Circle Inclusion Choir, together with Amelia Curran, celebrating inclusion and community for Canada’s 150th birthday at Stella’s Circle Sings for Canada! 

It's like he knows me!!

And so we headed to the LSPU Hall on Tuesday evening to enjoy a night of fabulous music with an even more fabulous message of social justice and inclusion.

With performances by the Inclusion Choir and Juno Award-winning Amelia Curran, this event showcased an original song written in collaboration with Amelia. The audience was also treated to a screening of a short video by Newfoundland filmmaker Roger Maunder, documenting this remarkable project.

Stella's Circle Inclusion Choir is more than just a choir. It was formed ten years ago in an attempt to bring people together to encourage belonging, empowerment, and acceptance through the power of song. There is no audition process, no prerequisite for singing ability, and no competition. With open arms, the choir provides a unique opportunity for people who want to sing and experience a sense of community and belonging.

"The Inclusion philosophy is that the choir is a place of acceptance and an opportunity to be a part of something bigger; it increases social connections for people and can be a great first step to engaging in other community activities."

Most of the choir's members have overcome or are living with significant struggles, such as homelessness, mental health issues, poverty, addictions, or are reintegrating in the community after a period of incarceration. They are motivated by the desire to share the joy of singing with as many people as possible, with the understanding that singing in a choir makes you feel good and helps combat feelings of loneliness and isolation. They are a diverse group of people brought together by music and bound together through shared experiences.

"It's really important to have people be included in their communities, and a lot of the individuals that avail of the services of Stella's Circle sometimes feel as though they're excluded, so it's really special, what's happening in the Inclusion Choir."

Choir Director, Helen Murphy says, "Everybody needs to feel connected. And it doesn't matter if it's a small group in St. John's, Newfoundland, it's everywhere. We're all the same that way. We flourish, we grow, we change. We can be our best selves when we're connected to other people - when we feel accepted and respected and certainly not judged."

Amelia Curran, who just released her eighth studio album, is also a strong mental health advocate. Through her organization, It's Mental, she works to improve treatment for people with mental illness and erase the stigma associated with it. A couple of years ago, she and Maunder created This Video with a powerful message that started the conversation about Newfoundland's mental health problem and how poorly our system supports people suffering from mental illness. Amelia has big and brave ideas. She believes in them and she works hard for change, and because of that, a new path is being paved.

The evening was an emotional one, and there wasn't a dry eye in the house. There was so much gorgeous intimacy and honesty, and I fell in love with every member of the choir and every impactful word that was sung. (And I fell in love with Andrew all over again for knowing that I would want to be there, for wanting to be there with me, and for appreciating it all as much as I did.)

Inclusion is a simple but powerful concept. It is not just about being in the same physical space as someone else, it means actually caring about the people around us. My amazing little boy has changed what 'inclusion' means to me. He has opened my eyes to the incredible strength and courage that it takes to navigate a world that doesn't always make it easy for people. I want to help make it easier for my son and for everyone else who has challenges of some kind. I want to live in a world where everyone matters, and where everyone is valued for who they truly are.

The thing is, everyone is going through something. Everyone has their thing. Some are more obvious, while others are hidden, but we all have our struggles. Finding connection and community and celebrating life together is the key to reminding ourselves that we are not alone on this journey. We all need to feel like we belong to something that is bigger than we are alone.

Choir member, George Walsh summed it up beautifully when he said, "Maybe some people are not as vocally strong, but when we come together we are one voice."

For me, this performance by this choir was a demonstration of hope in its purest essence. Hope that every one of us may live in a world where we love and take care of each other.

The evening closed with a surprise appearance by Geraldine Hollett, Phil Churchill and Andrew Dale of The Once, who presented the Inclusion Choir with a Music NL Award for ten years of positive community empowerment!

Geraldine held back tears when she said, "Stella's Circle Inclusion Choir, you bring light to darkness. You offer hope for a better world for us all. You let people know that they do not have to feel alone. You inspire, and you have touched countless lives, including all of us tonight, and continue to do so every time you collectively open your mouths."

Congratulations to the Stella's Circle Inclusion Choir! And thank you for the joyful reminder that Hope Lives Here!

Here is a link to their new song, 'Be the Change' on SoundCloud. - https://soundcloud.com/user-187704553/stellas-circle-be-the-change

I will post the link to the documentary as soon as it's available!

The Janeway: An Impossible Dream Hospital

On March 30th, I had the distinct pleasure of attending a lecture by Dr. Rick Cooper titled, “The Janeway Child and Rehabilitation Centre – An Impossible Dream Hospital". The lecture took place at Hampton Hall in the Marine Institute, and was part of a series of talks presented by the Newfoundland Historical Society.

"In August 1966, the Charles A. Janeway Child Health Centre opened and became a referral centre for all sick children in the province and became an affiliated hospital of Memorial University of Newfoundland Medical School. Before Confederation, child health care in Newfoundland and Labrador was below standards when compared to other Canadian provinces. After Confederation some improvements were made particularly in public health but Dr. Cliff Joy, a pediatrician in 1958 felt that the hospital treatment of children was below standard and the province lacked a central referral centre for sick children. He advocated for a central free standing Child Health Centre in the Province. In 1960 the Americans closed Pepperrell and made the base hospital available to the Province. The Newfoundland Medical Association, the Premier, the March of Dimes and the Rehabilitation Community wanted the Pepperrell hospital to be a Rehabilitation Centre. Dr. Joy persisted and because of several events and the support of several prominent Canadian and American pediatricians was able to persuade Mr. Smallwood to make the Pepperrell Hospital a Child Health Centre. In his lecture, Dr. Rick Cooper will trace this story of the Janeway hospital, and the development of child health care in Newfoundland."

Dr. Cooper has been a practicing pediatrician at the Janeway for the past 43 years, providing quality pediatric care to the children of Newfoundland and Labrador since 1974. He has conducted extensive research on the development of child health care in Newfoundland, and has a forthcoming publication on the history of the Janeway Children’s Health and Rehabilitation Centre.

The Janeway recently celebrated it's 50th birthday (which I wrote about HERE). My family is all too familiar with the current Janeway hospital, and I remember visiting the previous Janeway site when I was young, but I was not aware of the challenges that were initially involved with establishing a dedicated children's hospital here in our province. Dr. Cooper's presentation was fascinating, and his personal connection - not just to the building, but to the people - were what made it so engaging. This man has stories, and I could listen to them for days.

My family is fortunate to have had Dr. Cooper play such a pivotal role in our own story. My son, Brennen was born in California in 2005. Soon after his birth, it became clear to me that something was not quite right, but the doctors there dismissed my concerns and sent me away, saying that my baby was "fine" and telling me not to worry. I continued to seek help in California, but was getting nowhere, so after several difficult months, I returned home to Newfoundland to be with my family. Within a couple of days, we got an appointment with Dr. Cooper, and as soon as he saw Brennen he knew there was something wrong. He acknowledged my concerns and ordered a battery of tests, and for the first time since my baby was born, I felt like someone finally cared enough to try and help us. 

Turns out, Brennen was not fine. He was diagnosed with Spastic Quadriplegic Cerebral Palsy, Seizure Disorder, Global Developmental Delay and Cortical Visual Impairment. Dr. Cooper didn't mince words when he told me that his condition was very serious, and that my child was going to have a difficult life. My heart was broken, but I appreciated his honesty and his gentle, caring nature. I will never, ever forget those early days. They were some of the hardest of my life, but I have to thank Dr. Cooper. Understanding what was going on with my child was the first step to accepting our situation and coming to terms with all that lay ahead for us. I often wonder how things would be today if I hadn't returned home to Newfoundland. How many times would I have been dismissed and turned away? How long would my child have gone undiagnosed and not have received any therapeutic services? How much longer could I have survived the anguish of not knowing what was wrong with my baby?  

Dr. Cooper is a strong and respected leader in the child health care field, and we are so happy to have him on our side.

Dr. Cooper's talk also reaffirmed for me the importance of sharing our stories. His upcoming book contains the accounts of several individuals - patients, nurses and physicians, who share their personal experiences with the Janeway. He says, "It's really important that we tell our stories. Let's face it, the history of surgery is probably a bit boring, but someone's experience at the Janeway is not."

This is exactly how I feel about sharing our own experiences, and I will continue to write about our journey in hopes that it might positively impact someone else, or might inspire hope and encouragement in a parent who is struggling. Sharing the stories of other children and families in my Tulip Tales series has been an absolute honour, and I look forward to sharing more with you in the future. (If you would like to be featured, please send me a message!) 

We all have a story to tell, and I am using this space to try to change the way the world sees anyone who is different, to accept differences in others, and to accept our own differences that can make us feel inadequate. So please keep reading, and keep an eye out for Dr. Cooper's book, which will be released later this year by Boulder Publications! 

Rare Disease Day 2017

February 28th, 2017 marked the 10th annual Rare Disease Day!

"With research, possibilities are limitless".

The theme this year is "Research". Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure, or improved care.  It is also imperative that researchers work closely with patients, families, caregivers and advocacy groups to maximize the chances for success in advancing rare diseases research.

Imagine what it would be like to live without answers to the most basic of questions. This is the reality for many rare disease patients. Research can lead to the identification of previously unknown diseases and can increase understanding of diseases. It can enable doctors to give correct diagnosis and provides information to patients about their disease. It can lead to the development of new innovative treatments.. and in some cases a cure. People living with a rare disease are sometimes unable to find answers and medical solutions they need, often because of a lack of research. To illustrate this frustration, this year's video draws a parallel with a routine that many of us go through multiple times a day - searching for answers on the internet. The video highlights how isolating it is when you search on the internet but receive the response 'Your search had no results'.

The goal of Rare Disease Day is to connect patients, families, caregivers, and patient organizations; to provide opportunities for patients and parents to share their stories; and to promote education, awareness, and advocacy. We were a little late celebrating Rare Disease Day here in Newfoundland, but we had a gathering this past Thursday to raise awareness of the day and to acknowledge the experiences of rare disease patients and their families right here in our province.

Sarah Predham, a Genetic Counsellor with the Provincial Medical Genetics Program of Eastern Health, presented "Genetics and Rare Disease: An Evolutionary Tale".

Simon Lono is a health care and rare disease advocate. He spoke about his experience as a patient living with a rare diagnosis, and his struggles within the health care system.

Leah Farrell is a parent of a child with a rare diagnosis, and a dear friend of mine. (I shared Leah's son's story HERE). Leah spoke about creating community and making connections with other families living with a rare diagnosis.

To close the evening, we were treated to a fabulous performance by the Perlin Players - a division of the Vera Perlin Society, whose mission is to secure and/or provide quality service and support for individuals with a developmental disability and their families in the St. John's and surrounding area, enabling them to participate in all areas of community living.

The Perlin Players are an extraordinary group of individuals who are well-known for their many successful lip-sync productions and dinner theatre shows. This was my first time seeing the group perform, and I was blown away! If you have the opportunity to take in a show, I would absolutely recommend it! These guys (and lovely lady!) did not disappoint!

A disease is considered to be rare when it affects less than 1 in 2,000 people. Due to the low prevalence of each disease, finding somebody else with the same condition can be a challenge. If you are affected by a rare disease, you may be the only person in your local community or the only person your doctor has ever seen with that condition. This can feel incredibly isolating, but it is important to remember that you are not alone! Social media networks have become a vital communication tool for patients and their families, allowing them to connect with others living with a similar diagnosis, and to meaningfully support one another. Rare Disease Day and events like this one allow the greater community to come together and show our support for those living with a rare disease, to learn about various rare conditions, and to create awareness and advocacy around the more than 7,000 rare diseases and disorders worldwide.

For more information on the Rare Disease Day campaign, visit http://www.rarediseaseday.org/

International Day of Acceptance

If you have been following my blog (or know me in real life), you will know that I am a huge supporter of 3E Love. I wear the wheelchair heart symbol proudly and have shared it with so many others (see HERE).

3E Love's Wheelchair Heart is a symbol of acceptance, love, and strength. It embraces differences, it educates the unaware, and it empowers and unifies people of all abilities. The symbol represents real people and real life instead of perceptions and stereotypes. 3E Love is about loving and living life to the fullest no matter what you can or cannot do.

On January 20th, I will be wearing my wheelchair heart proudly to acknowledge the International Day of Acceptance.

International Day of Acceptance is a day dedicated to social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

Who is Annie? What is January 20th, International Day of Acceptance, and how did it start?

Annie Hopkins was amazing. She didn’t want you to think she was… but she was.
Annie was born into a world that tried to limit who she could be and what she could do. She grew up seeing her peers and role models with disabilities face discrimination daily, sometimes on purpose, and sometimes indirectly. Annie lived in a society where people with disabilities were not portrayed in the media as beautiful, able, or equal members of a community. She entered her teens knowing that she wasn’t expected to pursue a higher education or to live independently. She lived life knowing that strangers thought more about her disability and presumed life expectancy than they thought to say hello as she rolled by.

Annie didn’t care. In fact, she was calculatedly reckless in how she chose to live, always pushing the boundaries of what people thought she could do and using her experiences to educate others. In high school when the choir instructor told her that she probably wouldn’t make the cut, she won every talent show, year after year. In college, she wanted to join a sorority, so she forced more than 40 houses on campus to build ramps so she could participate in rush week. After college, she moved out on her own and created humorous yet educational YouTube videos to show people how she faced her challenges. She never hesitated to test her limits, especially when it came to giving to others… Annie was everything a person hopes to be as a family, friend and community member. She was generous, courageous, and empathetic and she lived how people all wish to live. Annie embodied the very best spirit that humankind has to offer one another, and the world.

Annie Hopkins was an advocate, entrepreneur, artist, and student, who demonstrated what is possible when you love life. In 2007, she recruited her brother Stevie to help her start a company to spread her message. She created 3E Love with the idea that her “Wheelchair Heart” symbol unified people of all abilities and it ignited conversations every day that would help change attitudes for the better. Her ideas didn’t stop there: she wanted to create a disability owned and disability operated social entrepreneurial endeavor that one day, would be successful, would further empowerment and would demonstrate what can be achieved with a positive love for life and changing perceptions.

Social acceptance is the key… not the pity and ignorance with which she grew up. Embrace diversity. Educate your community. Empower each other. Love life!

Unfortunately, on January 20th, 2009, the survival of Annie’s message was threatened when she passed away from unexpected complications to a simple medical procedure. Overwhelming support from friends, family, and the disability community helped keep her ideals alive. Stevie Hopkins, her brother who helped her start 3E Love, took the reins and never looked back.

International Day of Acceptance began in the beginning of 2010. Stevie and his family were not looking forward to the Chicago winter, the snow, and everything else that would remind them of losing Annie. 3E Love and Annie’s message had become Stevie’s primary source of strength and hope during the first year after Annie’s passing, and so he had the idea to change January 20th from a day that represents sadness and loss to a day that represents Annie’s message of empowerment and loving life. If people all over the world would embrace their challenges and accept others no matter their ability, Annie’s message and lifestyle would be alive forever. People on the internet from all over the world responded positively and got everyone they knew involved. Even if they did not own one of our t-shirts to wear, or could not afford temporary tattoos or stickers, they drew the symbol on their hand, made homemade posters, posted about it on social networks, and did everything they could to show the world that they were a part of this acceptance movement. January 20th would now and forevermore be an International celebration to celebrate Annie’s life, her ideas, and the 3E Love movement instead of mourning her loss.

Since then, 3E Love and the Wheelchair Heart has become an international brand and symbol of love, strength, and hope. Over 50,000 people worldwide own at least one item of 3E Love merchandise. 3E Love’s Wheelchair Heart is in every state and 33 countries! Everyone who “wears their heart on their sleeve” does so for different reasons, but they’re all unified by one symbol, no matter their ability.

So on January 20th, join us in celebration of social acceptance. Get involved by “wearing your heart on your sleeve”!

Tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life. You are a person who is empowered to make a difference in the world and will not be without a voice in society. You are not living disabled, you are living.

Tell the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else – you also have a role in our culture and life. You can start change by demonstrating acceptance and showing the world that you embrace people of all abilities.

Start the conversation of acceptance today!

Thank you for your love and support these past 6 years! Annie’s dream is alive and the 3E Love movement is stronger than ever.

Join the movement at www.dayofacceptance.com

Launching the Boat

Cornerstone Housing Society recently hosted a weekend event called "Launching the Boat: Introducing L'Arche to Newfoundland and Labrador".

I wrote about my experience with Cornerstone Housing Society and L'Arche earlier this year, and you can see that post HERE.

L'Arche communities are homes for adults with intellectual disabilities who live with assistants in family-like settings. L'Arche - French for 'the ark' - was founded in 1964 by Jean Vanier. Today it is an international federation with 149 communities worldwide, 29 of which are in Canada. There is, however, not yet a L'Arche community in Newfoundland and Labrador.

Cornerstone Housing Society is a Newfoundland-based incorporated charitable organization that is run by volunteers. Cornerstone's vision is to establish and sustain a L'Arche community in the St. John's region.

The opening event was held at the MUN Medical School Lecture Theatre, and included a keynote address by Raphael Amato.

Raphael Amato has been a L'Arche member for 30 years. As outreach officer for L'Arche Ottawa, Raphael has been actively involved in disseminating the mission, vision and values of Jean Vanier and L'Arche in the National Capital Region with the aim of fostering a more human and caring society.

Raphael presented "Lessons from Sharing Life with People with Developmental Disabilities". He spoke about learning from people with disabilities, mutual relationships, transformation through human encounters, and challenging society and organizational structures.

Raphael stressed the fact that L'Arche homes are not group homes, but instead they are a community of people who care for each other. He spoke eloquently about the difference between caring for someone and being in a relationship with someone, saying that if all you do is take care of a person, you are missing something! We learn fundamentally from each other, and I know from experience that there is so much we can learn when we share our lives with others and embrace each other's differences.

Raphael's talk was followed by a panel discussion on the L'Arche community model. Panelists included Sarah Parisio, whose involvement in L'Arche began in Ontario, where her parents were involved in founding L'Arche London. Sarah has since taken on various roles in L'Arche communities in both Canada and Italy. Upon arriving in St. John's, she sought out Cornerstone Housing Society and quickly became an active community member, joining the Board of Directors in July, 2016. For Sarah, L'Arche and CHS are places of belonging, and it is in large part thanks to these relationships that she has come to feel at home in our province.

Sarah believes in the value of community and she has a desire to live and encourage authentic relationships across difference. Sarah presented on the model of care on which L'Arche is based, to demonstrate the unique features of L'Arche that you don't find in other services for people with disabilities. She described the conventional care model vs. the mutual care model, and explained that relationships are the foundation of mutual care, and the mutual well-being of both people who are involved in the relationship is considered.

"These relationships allow people to overcome some of the dominant conceptions that we have about people with intellectual disabilities, and about disability in general, so we're going from looking at the disability to looking at the person and beyond."

Sarah believes, as Jean Vanier does, that "L'Arche serves as a sign for our society that there is a different way of living, that you can live with people who are very different from you and that can be a very beautiful thing."

She closed by saying, "Mutuality in relationships across difference is a meaningful endeavour that searches to empower and uplift all members of the community. L'Arche isn't about people with intellectual disabilities alone. It's about every person who belongs to that community, and so it's as much a worthwhile thing for me to do as it is for anyone else."

Also on the panel was Krista Simmons, an emerging artist and Core Member of L'Arche, who just celebrated her 10th anniversary as a member of L'Arche Saint John. She is passionate about community, working hard and staying healthy. Krista was happy to make her second trip to Newfoundland, and to share the impact that L'Arche has had on her life.

Cornerstone Housing Society also hosted a L'Arche Community Day at Rotary Sunshine Park. This event showcased many of the activities that would take place in a L'Arche home, such as storytelling, music-making, arts and crafts, and time spent together just getting to know each other.

 Thanks to Marc Lafrenière for these beautiful photos!

We had lots of fun singing songs, painting fish, and making some new friends! We always feel very welcome when we attend meetings or events with Cornerstone Housing Society. They have embraced my family with open arms, and there is a sense of worthiness - of being loved and feeling a great sense of belonging in a community where we are recognized for who we are. I was glad to see such a large turnout to the events this past weekend. It shows that people are interested in creating opportunities for individuals with disabilities and for families like mine. Parents just want their children to belong, and that is the core of L'Arche communities. Everyone belongs. Everyone is treated with respect, and kindness, and compassion, and that is exactly what I want for my son.. and for our society as a whole. I try to educate people about disabilities, but the reality is that we learn more about each other through living together and recognizing that every single one of us has areas that require help and support. 

    To learn more about Cornerstone Housing Society, visit www.cornerstonehousingsociety.ca
and read my previous post on L'Arche HERE 

For the Love of Food Trucks

This Saturday was a busy one at Easter Seals NL! In the morning, they hosted a Family Fun Open House as an opportunity to promote their programs and services for persons with disabilities. The open house was followed by a Pop Up Food Festival, which featured some of the best food trucks that St. John's has to offer!

Proceeds from the food festival go towards supporting Easter Seals' many programs and services for persons with disabilities right here in Newfoundland and Labrador.

Oh my goodness, you guys! I didn't realize that St. John's had so many awesome mobile food vendors! Food trucks are super popular in bigger cities around the country, and many people frequent food trucks regularly, but here in Newfoundland I could only think of a couple that I knew of off-hand. The first, and probably the original food truck here in St. John's being Ziggy Peelgood's! Everyone knows Ziggy's has been on the go for over 25 years, providing THE BEST french fries from a number of locations around the city. Then there was Long Dick's Sausage Emporium, and that fiasco a couple of years ago with them not being allowed to park outside of City Hall. There's been a few new ones recently, like Hitchen the Kitchen, from the owners of Blue on Water, who serve tacos and burgers and pulled pork mac & cheese from their food truck on Elizabeth Avenue. And Happy Camper International Eats, which offers healthy options like noodle and curry bowls, jerk chicken paninis and Korean BBQ.

I was excited to see some new food trucks and pop-ups at this event, and also thrilled to see such a crowd come out to support our local vendors and Easter Seals!

We are a generation of foodies, and food trucks offer a great way to try new types of foods along with a novel dining experience. They provide fast, convenient - and most of all unique meals on the go. There's something so fun about walking up to a truck, placing your order, and sitting at a picnic table or park bench to eat your lunch outside. It's just exciting to eat food that comes from a truck! And food trucks are all about community. They are a great place for people to socialize, as they are typically located in high-volume areas, and you get to talk directly to the person who is making your food, which is nice.

There were many pop-up food vendors set up inside Easter Seals House as well, so we met up with friends and found a table where we could enjoy our snacks and watch the crowds.

 OMG, these fresh homemade doughnuts from Sadie Leighs were to die for!

Andrew and my Mom and I tried sandwiches from Oh My Cheeses, and though the lineup was long, they were worth the wait! Mom had the Caprese Sammy, with tomato, mozza and local basil. Andrew had honeyed pear with brie and basil, and I had the French Onion Soup Sammy, with caramelized onion, mozza and swiss. They were all SO GOOD!! 

This is a pizza kone from Kono Pizza NL. 

They make dough cones filled with amazing handmade pizza sauce and a variety of different toppings. Yum!

I am constantly amazed by all of the incredible concepts that food truck owners are coming up with! There is so much creativity and ingenuity in this industry, and I am excited to see how it will grow here in the future. This event was a tremendous success for Easter Seals, and they are already planning for the next one.

"In the end, every bit of food you ate helped support programs and services for persons with disabilities- and that was pretty nice of you."