Contributed by Monica Alves, Community Engagement Team
A relationship between siblings can often be the longest lasting for an individual living with a developmental disability. At a young age, siblings can feel pressured to grow up quickly and take on more responsibilities in order to contribute to the family support system. It is not uncommon to feel overlooked as a child because your sibling’s needs took more attention of your parents. However, there are a plethora of positive traits that often emerge in siblings through these bonds and experiences. Acceptance, understanding, patience, empathy, selflessness, and responsibility are just some of the characteristics these siblings build in profound ways and exude throughout their everyday lives.
“Over time, I have come to realize that as siblings of a person with a developmental disability we have certain superpowers that come from the gifts of the role …. The greatest gift my life with my sister has given me is compassion” – Kurt, Through Thick and Thin
To the brothers and sisters of persons with disabilities – we see you. The sacrifices you’ve made, the additional roles you may have taken on, and the loyal and protective attitudes you’ve developed do not go unnoticed or unappreciated.
The Sibling Collaborative
Siblings without a disability are often left out of the story, or come back into the story later in life. Their narratives tell us a lot about the human and disability experience. However, they are left mostly untold. The Sibling Collaborative noticed this in their work over the last year, and wanted to make a change. This collective is a support group for people that have a sibling with an intellectual or developmental disability across Canada.
Co-Founder Helen Ries, interviewed nine people around the country to capture their stories, perspectives, and collective wisdom to offer it to the world. They now share these stories of compassion, resiliency, courage, and love; through the good times and the bad, in their new e-book titled ‘Through Thick and Thin’.
“We are the first generation of individuals living our lives alongside our siblings with an IDD [intellectual or developmental disability] in the community – and our siblings are the first generation outliving our parents. Our stories are not easy and, until now, they have lived in isolation, disconnected from other siblings. Just like we as siblings have.
The Sibling Collaborative is shining a light on our stories as siblings, bringing them out of the dark, out of isolation. Though our lives have countless twists and turns unique to each of us, we are connected by a common invisible thread of love for and dedication to our brothers and sisters.”
– Eric Goll, Through Thick and Thin
Melanie and Mark
Our very own Shared Living Coordinator Melanie Cortner, shared with us what it was like to grow up with her brother, who lives with a developmental disability.
Melanie is the oldest of three – her little sister Jen, and brother Mark, who is three years younger than her. “For 14 years, it was just him and I,” she shares. It was when Melanie was five years old and Mark was just two, that she found out something was different about him. The neighborhood kids told her they couldn’t play with her and her brother because they “didn’t want to catch what he has.”
Melanie remembers going to many of his assessments with him. As Mark’s big sis, she always advocated for him. Although there has not been an official diagnosis, Melanie believes Mark fits on the Autism spectrum. He is of higher functioning and has led an active life style, even participating in Special Olympics swimming.
Mark and Melanie did regular sibling things together, such as playing with Legos, toy cars, hide and seek, and riding around in laundry baskets. Of course he often annoyed her, like a brother usually does. But what really angered Melanie was seeing Mark get bullied. She felt like she was the only one allowed to pick on her little brother. “I get to pick on him – you don’t,” she explains. To Melanie, Mark was just her little brother without any labels attached.
Believing in his Abilities
Throughout their childhood, Melanie saw how her brother was unjustly segregated and sheltered from the community. They didn’t go to the same school together. Mark took a handy dart bus to and from his school every day. Melanie recalls one time in particular, when the kids at Mark’s school got out early on a half day. Their mom wasn’t aware of this, and panicked when she found out his specific bus wasn’t running at that time. But Melanie wasn’t fazed by this. She trusted that Mark knew the way home. And sure enough, he returned home without a single trouble.
It was instances like this that really irritated Melanie – seeing her parents constantly underestimate and make excuses for her brother. She knows that Mark is capable of more than they often give him credit for. In fact, Melanie shares a story of the family eating dinner one evening together. When When Mark was just nine years old, their step dad started choking on food, Mark sprang into action to perform the Heimlich maneuver on him. In retrospect, Melanie wishes she could’ve “cut the apron strings” for Mark earlier on and encouraged him to be more independent.
Once an Advocate, Always an Advocate
In her professional and personal life, Melanie was and continues to be a strong advocate for individuals with disabilities. When she was just 12 years old, a community Parks and Recreation board came to her school looking for volunteers. Melanie jumped on the opportunity and was placed in day camps with special needs kids. Melanie also had a deaf aunt and uncle growing up, which inspired her to volunteer with the hearing impaired.
Later in life, she found herself in some emotionally tolling work. She worked with persons with developmental disabilities who had experienced life in institutions. “Some had never even been outside before,” says Melanie. She reflects back on her time with these individuals and their first time leaving the grounds, explaining that they simply “wanted to experience freedom.” This work was often tough yet powerfully moving, and filled Melanie with immense gratitude for her own brother’s situation. “I’m glad my brother was never institutionalized.”
A Bond Across Borders
At the young age of 21, Melanie made the move out to BC, leaving her family to further her career in individual and family care services. “Mark said he couldn’t wait until I was gone but was sobbing when I actually left,” Melanie laughs. Mark, who is now 41, lives in Nova Scotia. Monday through Friday, he works at Dasc Industries (Dartmouth Adult Services Centre) and Superstore on the weekends. He is a very hard worker, so much so that his employers wish they had clones of him!
Mark and Melanie have frequent phone calls and FaceTime check-ins, where they often discuss current events and the weather. “We love each other very much,” she shares. Their relationship has also impacted Melanie’s children. In the past month, her 15 year old daughter witnessed some boys in her school openly making fun of other students who have disabilities. “She was the one who stood up and told them to stop and that it wasn’t okay,” Melanie says. It appears that her strong advocacy voice has rubbed off on her children.
Sherry (Behaviour Consultant & Clinical Supervisor) and Melanie
More than Meets the Eye
Having a sibling with a disability has played a large factor in molding Melanie into who she is today. Her role as a Shared Living Coordinator involves more than matching a person served up with a safe and stable home and family to care for them. It’s about building a link between people that can extend further out to the wider community. “It’s made me more of a caregiver, advocate, and makes me comfortable speaking up for [persons with disabilities]. I can also sympathize and empathize with the families,” she states.
Parents can be fearful of their children getting hurt getting hurt, and she understands where they’re coming. But this motivates Melanie to connect with the parents and other siblings to show them that their child is more able than they may have thought possible.
Jen, Melanie and Mark in 2016
Melanie is both shocked and frustrated that there are still people out there that have no concept of what a disability is. She’s lived it her whole life, with members of her family experiencing obesity, deafness, and Autism. As such, she’s seen the alienation her loved ones have felt from their community first hand. When it comes to her brother, Melanie emphasizes, “It was never a matter of making him feel included. He just was.” No sibling relationship is the same as the next, and to Melanie there was and is nothing abnormal about the one their share. “He’s not a label to me. He’s just my brother. Simple as that,” she adds.
Resources for Siblings
Like Melanie and Mark’s, many of the stories, emotions, and fears shared in ‘Through Thick and Thin’ express an overarching theme of siblings being at the forefront of inclusion.
“As a sibling I see the incredible capability my sister has that others don’t see or they haven’t been able to see. It is a privilege for me to help my sister realize her capability.” – Eric Goll, Through Thick and Thin
Supports for siblings are critical. If you are a sibling of an individual living with a developmental disability, we invite you to share your stories or check out the resources below.
The Sibling Collaborative is strengthening families by uniting people who have siblings with intellectual or developmental disabilities to think differently, live differently and feel differently.
Through Thick and Thin E-book – Siblings have lived in the shadows for decades before realizing that others share similar experiences. By connecting through our stories, the warm sunlight is cast upon us, the shadows fade, and we find our place of togetherness and belonging.
Online Community –Join their Facebook group, a community of compassionate and collaborative adult siblings. They share information, support each other, and discuss topics of interest with other siblings across Canada.
Growing Together is a provincial effort which offers programs and resources dedicated to the needs of brothers and sisters of persons who have Autism and related disorders, unique health, developmental, and/or mental health concerns.
Don’t miss their 4th Annual Sibling Support Day happening on Sunday, June 30! Bring the whole family to celebrate this special day with a free VIP Private Screening of Toy Story 4 at Cineplex Riverport Cinemas, followed by a carnival reception at the Pacific Autism Family Network’s main hub in Richmond. Enjoy a fun movie experience where the whole family can sit back, relax, and enjoy the show in a comfortable and inclusive environment. RSVP here today!