Monday, October 24, 2016

Making the Journey

This past Friday, I attended the opening of "Making the Journey: A Photovoice Study About Transportation and Quality of Life for Persons with Disabilities".

Making the Journey features the photography of a group of adults with disabilities who came together over 12 months to explore the social impact of transportation on their lives through photos and personal narratives.

Dr. Kathleen Sitter, lead researcher, and assistant professor with the School of Social Work, hopes the exhibit will encourage a discussion about transportation issues for persons with disabilities and engage policy and decision makers to mobilize to bring about change.

"Accessibility is a growing area of focus across Canada," she said. "It has a huge impact on our ability to participate in society. Transportation is particularly important, because it touches on so many aspects that connect to a person's quality of life. This exhibit highlights the stories of our community through photography."

The participants worked closely as a collaborative team with members from Memorial University and Empower, the Disability Resource Centre to create visual stories about their experiences of transportation, and the supports and barriers to accessibility as experienced and understood by persons with disabilities.

"It's very important that persons with disabilities' viewpoints and experiences are captured through this photovoice," explained Kimberly Dawson, Executive Director of Empower. "It's been a great partnership and a wonderful opportunity."

One participant, Laura, wrote:

"I am originally from rural Newfoundland but moved to St. John's in 2005 to attend university. I am a wheelchair user. For most of my St. John's life, I relied on using the para-transit system. It was my only transportation option, and a restricting and sometimes quite frustrating one at that. There is and always was a high demand for the para-transit system, making it difficult to book rides and causing long wait times for a bus. In 2013, I was able to get my own accessible van, which gave me so much freedom. I was no longer restricted by the para-transit's strained system, hours of operation, and geographic limitations. My transportation options increased more in 2015 when the City of St. John's introduced a few accessible Metrobus routes and taxi cabs.

One reason I got involved in this photovoice project is because transportation is an important part of a person's quality of life. Not everyone has their own personal vehicle, but everyone should have the same options and level of access to public transportation modes. I am hoping that this photovoice project helps create awareness around the importance of transportation for persons with disabilities, and how restricted accessible transportation options are throughout Newfoundland and Labrador."

Laura shared an example of what a conversation might look like between her and a friend, both when she had to rely on the para-transit system, and now having her own personal vehicle.

And this photo is titled "A Waiting Game".

Laura says, "When I used the para-transit system, I spent a lot of time waiting. I cannot speak  personally as to what the system is like now, but I have heard from current para-transit users that things have not changed much. I spent a lot of time waiting by my door for the bus. Waiting and wondering; being anxious and frustrated. I had to be ready 15 minutes prior to my requested booking time, but sometimes would still be waiting 30 minutes past my requested time. Sitting... waiting... contemplating: should I go back inside? Should I keep my hat on? Will I be late for class? Is the bus even on its way?"

Another participant, Kim, writes:

"Having transportation that is accessible has given me more independence and freedom to do things in daily life. Accessibility means being able to go to places where everything is in reach, that I can access places and buildings without having barriers like stairs, elevators, or narrow doorways. Accessibility means I can be included in events, and not be left out. I am able to go visit family or go to events in the community. I am included. I can come and go in a safe environment without hurting myself and endangering my safety or my health. 

I know how important it is to plan ahead and make sure I have transportation and where I am going is accessible and I have a safe way home as well. I decided to be involved in this project because I wanted people to know how important accessible transportation is to me and to so many people, and how it makes a difference. Otherwise, I would be isolated. Having transportation that is accessible has changed my life."

This photo is titled "Access to the Outside World".

Kim says, "This is a pathway of my house. I am not able to rely on family to do my snow clearing. I cannot physically do it myself, especially since my bowel surgery and recent cancer diagnosis. I also have hernias where I had surgery. My home support workers are not supposed to do snow clearing, this is not part of their duties. So I have to rely on others for my access to everything. The snow is a big obstacle that causes a lot of anxiety if I can't get out to my medical appointments. I depend on the para-transit drivers to safely transport me from point A to point B and if the pathway is not clear and safe for them, I cannot get out. I cannot do my banking or grocery shopping. Otherwise I would have to give my home care workers my debit card and that has personal privacy issues."

I have written about the value of accessible transportation before (see HERE). Transportation is about a lot more than just getting around. It is about connecting people with all of the things that make life worth living, like family, friends, education, health care, job opportunities and recreation. Providing equal access to affordable and reliable transportation widens opportunities and provides all individuals living in our communities with an equal opportunity to succeed.

There is a lot of great work happening by a lot of great people, but we need to do more. We need to take it upon ourselves as community members to have strong values of inclusivity, to remove barriers and to liberate the potential of people with disabilities.

We don't want this to be the end of the conversation. This needs to be a continual discussion and we should make this an opportunity to start meaningful dialogues about what can be done to ensure that everyone, regardless of ability, is able to participate fully where they live, work, and play.

The 'Making the Journey' exhibit is taking place at the First Space Gallery in the Queen Elizabeth II Library, and runs until December 16th. You should go!

Sunday, October 16, 2016

Teal is the New Orange

In 2014, my family participated in the first ever Teal Pumpkin Project. Last year, there was an overwhelming response to the initiative, and this year, we are helping to make the project even bigger and better! We are working to reach families across the country and around the world with the Teal Pumpkin Project’s message of awareness, inclusion and community.

The Teal Pumpkin Project is a worldwide movement to create a safer, happier Halloween for all trick-or-treaters. Though the project was initially intended to benefit those with food allergies, I feel that it also applies to individuals and children dealing with intolerances, sensitivities and disorders that limit what they can consume. Children who may be tube-fed and do not eat by mouth, or who (like Brennen) do eat by mouth but don't chew well. Brennen does not eat candy or chips or any of the other common Halloween treats. He wouldn't know what to do with a lollipop and would probably choke on candy corn.

Food Allergy Research & Education (FARE) suggests giving out inexpensive items such as glow sticks, bracelets, pencils, crayons, erasers, bubbles, stickers, bouncy balls, spider rings, etc.. The goal is not to eliminate candy. I will have a selection of the usual Halloween treats available for children who want them (and some for myself!). The aim is to provide an option for non-food treats to ensure that ALL kids have a happy Halloween.

We always enjoy painting a real pumpkin, but it is great to see that you can now find teal pumpkins (like the one Brennen has above) in the Halloween section at Michael's Craft Stores, as well as lots of non-food items that are perfect for little trick-or-treaters!

1 in 13 children are diagnosed with a food allergy. Chances are, in your child's classroom or in your neighbourhood there is more than one family dealing with food allergies or other special dietary restrictions. Please consider participating in the Teal Pumpkin Project! It is a wonderful opportunity to teach children about the importance of inclusion, disability awareness, and food safety. It is not a matter of changing the tradition, it is a matter of making activities like Halloween more inclusive for all children.

To all of you who will be placing a teal pumpkin on your doorstep this year, please know that you are contributing to something that is very important to parents and children with food allergies and other eating restrictions. I am so very grateful for homes like yours that help allow our kids to just be kids and to enjoy the magic of Halloween!

Friday, October 14, 2016

Clothes Minded

If you've been following my Instagram, you may have already seen many of these photos. I have been partnering recently with Clothes Minded - a women's fashion boutique here in the East End of St. John's.

Clothes Minded is located on Stavanger Drive, just behind Winners, and it is my absolute favourite place in the city to find unique and well-crafted pieces to add to my wardrobe. The store is filled with many statement pieces that range from high-end fashion to everyday street wear. Because they only bring in a couple of the same item, I love knowing that when I shop here, I will come away with pieces that I'm not going to see on everyone else in town.

This small boutique carries an eclectic mix of lines like Pink Martini Collection, Angel Eye London, Smash, Others Follow, Black Swan, Vintage Havana, Papillon, and Coco & Tashi, just to name a few!

Owner, Nancy Garland says, "We try to focus on being on-trend but at the same time selecting styles that are timeless and that will bring you into the next season easily by just adding or eliminating a layer. We are very honest in helping our customers shop for the styles that look amazing on them, and that they feel amazing in when they wear them. We want our customers to enjoy their shopping time instead of walking away feeling frustrated because they didn't find anything that they felt good in. I believe that all women are beautiful, no matter what size they wear or how old they are! We all deserve to feel beautiful."

I love helpful store owners like Nancy, and I love how she curates her store with such careful attention to the tastes of modern women. I agree with her. We all deserve to feel beautiful. We've got a lot on our plate as Moms, and we sacrifice a lot to make room for the needs of our families. It's ok to do something nice for ourselves once in a while, and to do a little something to make ourselves feel good.. so get yourself up to Clothes Minded Boutique! I am certain you will fall in love with the store, and you may just fall in love with yourself all over again!

Here are some photos of what's in-store now!

Tuesday, October 11, 2016

Eat Your Veggies!

Eastern Health has recently launched a new Vegetable and Fruit Public Awareness Campaign.

Eastern Health has identified the need to promote vegetables and fruit based on low consumption rates here in our province. I was disappointed to learn that compared to the rest of Canada, the intake of vegetables and fruit in the Eastern Health region is well below the national average.

There is no disputing the positive impact that fruits and vegetables have on an individual’s health. Healthy eating is a key element in human development, reducing the risk of chronic disease and contributing to overall health and vitality.

This new awareness campaign promotes the consumption of fresh, frozen and canned vegetables and fruit, and is targeted to parents and caregivers of children between the ages of five and thirteen. The goal is to help parents and caregivers become more aware of their options and to learn ways to enjoy vegetables and fruit with every meal and snack.

Fresh, frozen, and canned are all good options!

Listen, I get it. Parenting is hard and life is busy and it can be challenging to try and do all of the things that we know we should be doing for our families. Healthy eating with farm-fresh ingredients should be a priority, but sometimes we let it slip. I'm with you. It can be difficult coming up with new recipes, and it is a total pain having to go to the grocery store every single day, but there are ways around it! Keep canned and frozen vegetables on hand. Stock up on fresh veggies when they are in season, and when preparing a meal, cook extra and freeze it for later. Your future busy self will thank you!

Make shopping for produce more enjoyable by visiting a local farm or farmers market. Challenge your family to explore new tastes and flavours. Get your children involved in meal preparation. Try new things, and have fun in the kitchen! You will be healthier and happier because of it!

We visited Lester's Farm Market recently. Their produce is so fresh and beautiful - it is harvested daily and placed on the shelves within hours! Once again, I was amazed at some of the things they grow that I had no idea were grown in Newfoundland. We typically think of potatoes, carrots, turnip, and other root vegetables that are hearty and are able to survive our harsh weather conditions, but with the help of greenhouses and new farm technologies, Lester's Farm has been the first in Newfoundland to grow crops such as corn, melons, sweet potatoes, artichokes, asparagus, and more! They also have an impressive selection of locally grown Oriental veggies!

Eating more vegetables and fruit may be the single most important dietary change parents and caregivers can make to help improve their family’s health while reducing the risk of major chronic diseases, such as heart disease, stroke, high blood pressure, diabetes and some types of cancers,” said Dr. Delphine Grynszpan, Regional Medical Officer of Health for Eastern Health. “Further, children learn from watching adults. By encouraging parents and caregivers to enjoy vegetables and fruit, we are also helping their children establish healthy eating habits for life.

We have been so fortunate with Brennen, in that despite his many challenges, he is super healthy and hardly ever gets sick. I'm sure a lot of that has to do with the fact that he eats so well, and eats such a variety of fresh fruits and vegetables. We will continue to expose him to new tastes and flavours, eating with him the most nutritious meals we can provide, and bringing better and healthier habits into our home!

For more information about Eastern Health's Vegetable and Fruit Campaign, visit

Wednesday, October 5, 2016

World CP Day 2016

World CP Day is a day to celebrate the lives and achievements of people with CP and create a better world for people living with cerebral palsy and their families. Its vision is to ensure that children and adults with CP have the same rights, access and opportunities as everyone else in our society.

Robyn Cummins, World CP Day Manager explains: "Cerebral palsy is the most common physical disability in childhood, and is also one of the least understood. There are over 17 million people living with CP, and 350 million family, friends and supporters who care about them."

I would like to use this space to educate our friends and family about cerebral palsy, to open up a dialogue and invite questions and comments in an attempt to create more awareness and understanding about a condition that is near and dear to our hearts.

I could write and write about things that I want people to know. I could tell you about the various types of CP.  I could use words like "athetoid" and “hemiplegia”. I could get into the various medications and surgeries and explain the benefits and risks of a selective dorsal rhizotomy. We could discuss the uses of adaptive equipment and technical aids, and all of the possible challenges that come along with the condition, such as seizures, vision problems and hearing impairment. 

I could write a lot of things, but when it comes down to it, I believe the most important message I can share is one that I think other parents would agree with, and that is that we want our child to be seen as just that - a child first, and not their disability. We want them to be accepted. We want them to be loved and to feel safe and we want them to be happy. We want people to recognize all of the joy they bring and all of the good they have to give.  

Each child with cerebral palsy is unique and they make up a diverse group with a variety of symptoms and challenges. For many, their condition has limited their ability to communicate, so it is up to us to speak for them, to advocate and fight for what is in their best interest. It is so important for us parents, caregivers and family members to stand up and be the voice for our children.  

Brennen brings so much light into our lives, and though there have been rough patches, I am able to see the good through it all. Sure, there are times when I am scared. There are times when I hold him in my arms and look into his eyes and tell him that I'm sorry he has to struggle, and that I'm sorry life is hard for him. There are times I want to hide away and shelter him from the world, but then I realize what a terrible loss that would be! I want the world to know my boy. Brennen is a gift and I want him to share his joy and love with many. I want people to know that though it seems impossible in the beginning, life moves on beautifully. It is a journey that is both stressful and frightening, but is also full of love, growth and understanding.

Having a child with CP has opened my eyes and my heart to a world that is full of blessings. Cerebral palsy has become a beautiful part of our lives, and one that I would never, ever give up. Today may be World CP Day, but we live with the joys and challenges of raising a child with cerebral palsy every day.

We are continuously growing and learning, but the one thing I know for sure is that though life is not always easy, it is always, always worth it.


"We must be willing to let go of the life we had planned so as to have the life that is waiting for us." - Joseph Campbell 

Through World CP Day, we will share our stories and ideas, and join together to combine our resources, energy and knowledge.  
Take action and join the global movement by visiting

Saturday, October 1, 2016


This weekend, Andrew and I took a drive out to Fahey Farm in Chapel's Cove.

Fahey Farm was established in 1798, and is the oldest Century Farm in Newfoundland. The farm is owned by Linda and Bernard Lewis, and they work the farm together, taking care of the animals, growing crops of fruits and vegetables, and tending to all aspects of life on a farm. Bernard is the 6th generation to run his family's heritage farm.

The farm is home to sheep, llamas and angora goats that all provide material for Linda's work. Linda is a fibre craftsperson, and she creates one of a kind wools and garments under the name Baynoddy Knitwear, Spinning & Weaving. Linda shears the sheep, spins the wool, hand-dyes the fleece, and creates some beautiful knitwear that is available to purchase at the farm, or at the Craft Council of NL.

Baynoddy is so full of character and rich in history and charm. Linda's shop is generously stocked with such a array of treasures, I could have spent days just looking around. There are original designed sweaters, handwoven shawls and scarves, and hand-spun, hand-dyed yarns, all from fibre grown on the farm.

We had a great chat with Linda, and then spent some time exploring the property and visiting the animals. Bernard showed us around the greenhouses, where they have an incredible selection of vegetables and fruits in various stages of growth. Did you know we can grow kiwi here in Newfoundland?!! I had no idea!

The animals all looked so healthy and beautiful and well taken care of. I can just imagine the life that they have out here on such an incredible property. I think I could handle it. Andrew and I have agreed that we would seriously consider living on a farm one day. I mean, I know it would be a lot of work, but I'm pretty sure we would love it!

Watching Linda and Bernard work was so inspiring, and makes me feel thankful for the beautiful treasures that nature gives us. It was really something to see how they are so self-sufficient, and it reaffirms to me that you can be successful and happy doing what you truly love.
May we all be so fortunate!

-Julie xo