Stories

on the topics that matter
woman reading a book to child
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Kaysen, Lana & Mark

Part of what has helped us face this uncertainty together is accepting that the book that we’re writing might be very different from other families’ stories.

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Kaysen, Lana & Mark
Kevan explores the Reed Flute Caves in Guilin, China with four of his friends. Kevan is being carried in his backpack by one of his companions as they all stand beside each other looking straight into the camera.
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Kevan

Traveling is a feat for anyone. Now, throw in a disability – throw in caregivers, equipment, terrain issues – and you have another beast altogether.

Kevan sits in his wheelchair, below a flight of stairs, with no accessibility for him to get to the top.
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Kevan

Accessibility, in the end, comes from folks putting others first and working together to find creative solutions.

A photo of a card with a caption that reads “No One Is You and That Is Your Power
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Brianna

They are not perfect. But they are mine. And therein lies their power. My stories are a curious amalgamation of dreams and experiences.

Shane sits in his wheelchair in the middle of a fully stocked supermarket aisle.
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Shane & Hannah

My Burden Complex was simple: growing up, from the ages of about 10 to 25, there were times when asking for help from others created a feeling of immense guilt within me.

Brianna poses in her wheelchair. Her Dad, who is also her primary caregiver kneels beside her; both are smiling at the camera with sunlight streaming in from a window in the living room.
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Brianna

We often joke that we have spent too much time together. If we can read each other’s mind, something’s got to give, if only to preserve our sanity.

A video of Kevan and his friend, Tom, talking about their friendship and travel adventures. Kevan sits in his wheelchair and Tom is seated beside him both looking directly into the camera.
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Kevan

It's all about a mutual friendship and relationship, and encouraging one another to go further.

Kevan sits in his wheelchair at his favourite local coffee shop. The image shows him smiling in the middle of the shop with wooden furniture, table flowers and warm lighting.
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Kevan

The key is to see people—truly see them—and let the value of your relationship be deeper than whether or not they help you with your wedgie.

Thumbnail of a video of Hannah Aylward, wife and caregiver to SMA patient Shane Burcaw, talking about caregiving in relationships.
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Shane & Hannah

Over the past four years, I've learned that caring for your partner can strengthen a relationship and it is not a burden.

Thumbnail of a video of Shane and Hannah talking about supporting each other even through frustrating situations. Shane sits in his wheelchair in front of a black bookshelf and Hannah sits beside him.
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Shane & Hannah

Throughout our relationship, Hannah and I have definitely used humor and loving support of each other, and flexibility to handle all kinds of frustrations.

Man with kid in playground
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Kaysen, Lana & Mark

SMA isn’t a barrier to living a fulfilled life; it simply means finding what a fulfilled life means for Kaysen.

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Kaysen, Lana & Mark
Thumbnail of a video of Shane talking about finding and following your passion. Shane sits outdoors in his wheelchair surrounded by greenery and trees.
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Shane & Hannah

Finding your passion in life can often feel incredibly difficult, but if you know what to look for, it doesn't have to be as hard as you think.

Brianna poses in her wheelchair in front of a bookshelf filled with hundreds of books. She is smiling directly at the camera.
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Brianna

It’s hard to find your passion in a world that tries to erase you. It’s hard to find your passion when, most of the time, disabled people are relegated to hospitals and living rooms.

Kevan being carried in his backpack by his friend, Tom, while on a trip in Paris. The Eiffel Tower, a popular tourist landmark can be seen behind them, with tourists milling around.
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Kevan

Through this experience, I learned the beauty of enriching the lives of others.

A photo of Kevan and his sister as toddlers, holding hands and smiling at the camera. Both Kevan and his sister have SMA Type 2.
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Kevan

So much of who we grow up to be is derived from the people who raise us, the world they shape around us, and the ways they help us navigate through that world.

Kevan relaxes in an outdoor picnic, surrounded by greenery and trees. He sits in his wheelchair flanked by two friends.
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Kevan

Raising children with disabilities looks an awful lot like raising able-bodied children. At least, it can with the right tools and mindset.

Karli and her brother sitting in kitchen wearing winter coats
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Karli

Grief is something you have to process, whereas having SMA was the only life I’d known.

Karli sitting in a wheelchair wearing a blue evening dress. A man kisses her cheek
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Karli

I didn’t immediately realize my peers were getting an entirely separate curriculum tacked onto their education. It was a gradual revelation for me. Subtle indicators until eventually, it was undeniable.

Close up of Karli’s head on a pillow. She holds a button pin that shows a rainbow wheelchair icon
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Karli

Neither disability nor queerness are choices, but we do get some say in where our journey with each takes us.

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Karli

While I didn’t stick to a career in the music industry, I’m still active in the community. Instead, my experience as a music journalist jumpstarted my career as a writer.

Woman with dogs reading book on sofa
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Kaysen, Lana & Mark

Feeling afraid, doubtful, overwhelmed, or even just plain tired—it’s all normal.

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Kaysen, Lana & Mark
two young boys sitting side-by-side, hugging while wearing superhero capes.
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Maude

We are quite aware that we will have to make adjustments to our living space if we want to keep our child at home with us.

baby laying in crib and smiling while a woman looks down on him while holding baby’s feet
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Maude

I prefer to give people the time to offer to help on their own as opposed to making them feel obligated to help us. Sometimes, a little thing like asking if we slept well is a nice gesture.

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Maude

Daily care for Jasmin requires the use of many supports including cough assist and suction machines, and love from family and friends.

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Maude

Dinner is a time for us to be together at the table as a family and to eat with Jasmin, even if he has a tube. A time to see that we are a normal family, that the four of us sit together at the same place.

Three young children siblings sitting on a dark couch with a green pillow
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Kaysen, Lana & Mark

Meet the Martin family. My husband, Mark, and I have three kids who all have very different abilities and preferences.

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Kaysen, Lana & Mark
Dad swimming with 2 children in a shallow swimming pool
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Kaysen, Lana & Mark

Providing education on accessibility needs is so crucial in today’s world, where about 15% of the global population is living with a disability.

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Kaysen, Lana & Mark
Young man in wheelchair wearing red jacket smiling outside in backyard
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Ben

Entering university as a person with accessibility needs comes with a lot of important things to consider

Young man in wheelchair wearing red jacket sitting outside home on outdoor stone landing
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Ben

The path hardest to tread was the one with the most optimistic ending.

SMA patient in wheelchair walking small brown dog in park bright sunny day blue skies
Karli profile img

Karli

If you’re entering a new relationship, or working towards one, here are a few things to keep in mind as you move forward.

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Kaysen, Lana & Mark

I am the mother of a sweet baby boy named Kaysen. He was diagnosed with SMA Type 1 roughly when he was about 8 months old and he, today, is now almost 3, he’ll be 3 in July of 2021.

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Kaysen, Lana & Mark
SMA patient in wheelchair nail polish blonde woman
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Karli

If you’re new to the world of online dating, or have been thinking about jumping in, here are a few things to consider when looking for your match.

Young woman SMA patient glasses blue sweater indoors warm lighting
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Sarah

Access to accessible workspaces is not a privilege, but a human right.

Young woman SMA patient sunglasses blue cardigan fountain outside sunny day
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Sarah

Applying for jobs can be stressful, let alone applying for jobs when you have accessibility needs.

Interabled couple sitting next to each other
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Jared

Five years ago, I swiped right on Tinder for the last time. As soon as I started talking to Sydney, I knew she was different.

Father with SMA wearing gray suit and yellow flower seated in wheelchair holding infant
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Jared

Becoming a father is the best thing that has ever happened to me. But that’s not to say it doesn’t come with its own unique challenges.

Thumbnail of a video of Shane and Hannah sharing relationship tips. Shane sits in his wheelchair with Hannah beside him, both looking straight into the camera, smiling.
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Shane & Hannah

Today, we want to share with you some tips for keeping the love alive and communication open in your relationship.

Black and white photo of Maude and husband with a newborn baby on her chest.
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Maude

At one point, I no longer knew what to do, but I knew I had to stand tall and here I am still standing tall, still fighting for my son.

Thumbnail of a video of Brianna talking about creating a magazine for disabled and non-binary people. She sits in her wheelchair in a private area of her home.
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Brianna

It's really difficult to put yourself out there and form your own community. But if you can find people that are interested and people who need that community as much as you do, it becomes a lot easier.

face of a man with mask in campus
Ben profile img

Ben

I have a supportive community around me and I have ambition—those are the things that matter to me in life.

3 kids in white shirt
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Ben

I don’t think I’ll ever tire of seeing Ben doing the things he loves with the people he’s chosen to surround himself with.

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Ben profile img

Ben

Something in my life that I think is extremely important is activity. That started out in a family setting.

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Ben profile img

Ben

Oftentimes, disability and travel don’t go in the same thought together but, we’d like to challenge that narrative so….

Shane and Hannah smile in front of their newly purchased home with a sold sign next to them. Shane sits in his wheelchair and Hannah stands beside him with her hand on his shoulder.
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Shane & Hannah

Buying a home is a stressful process for everyone. We did our best to have fun with it, and to remind ourselves that – stressful as it may have been – it was also exciting!

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