Qi Creative sat down (virtually!) with Karleen Rutter to discuss her experiences, ideas and projects as a Sibling Advocate.

Karleen Rutter is a Cultural Studies student at the University of British Columbia Okanagan (UBCO) who has always carried a passion for advocating inclusion and equity, drawing from her upbringing with her brother, Jed Rutter, who lives with a cognitive-developmental delay. In 2011, Jed was chosen as the Stollery Hospital’s Child Champion and National Ambassador.

What is Sibling Advocacy?

In prefacing our conversation, Karleen is quick to remark that her voice and experiences are not meant to speak for or over Jed, but to help facilitate and bridge opportunities that he can be involved and included in his community.

“When I’m identifying as a sibling advocate, I want to stress the fact that if I find a space or program that is being facilitated by disabled people, and they’re advocating, then I just want to shut up and support them because I never want to be speaking for those who can speak for themselves. That’s never my goal, for my able bodied self to be taking up more space than it needs to when there are people who are advocating for inclusive spaces.”

“I’m seeing how, from my perspective, where I am maybe in a University setting or job site, ways in which he can be involved and included. When I’m looking at supporting siblings, it’s again, just making sure that there’s space for people who feel they need to talk about their experiences and don’t necessarily feel like they’ve had the opportunity to do that. It’s never to ‘make the invisible visible’, that kind of advocacy work is already done by others.”

Advocacy in Community

Karleen recounted times where the public will view disability in a negative light, and reframing that as a sibling and as a family:

“There’s been so many times where for whatever reason, we’re at the airport, and we’re traveling with his G-tube feed, so we have to explain or show our medical documentation. There’s always this sort of, like ‘I’m so sorry’, or ‘is it going to get better?’ and other sayings like that. It’s no fault of their own, it’s just how we've created our society, just to think that if you have something that's intellectually different, or what we would deem as behind, or if you have some sort of medical trauma, that it's all negative, and that it's something that needs to be fixed.”

But it's never been a burden or something that we're trying to fix with Jed, I think we're just trying to fix the world around him.

“And Jed’s exactly the way he's always been and exactly the way he's always going to be. And that's awesome and I think that can surprise people. And yes, there's been stressful times within his medical history, or within navigating our education system. But it's never been a burden or something that we're trying to fix with Jed, I think we're just trying to fix the world around him.”

“We take those opportunities for educational moments—and responding like ‘no, it’s actually great, he’s doing great, we’ve adapted to how he lives and if anything, that’s made our lives better, because we’ve learned how to find joy in every little moment, to slow down, and not move so fast. There’s more positivity in it than people think there is.”

Advocacy Growing Up

Karleen mentioned how it’s a unique point of view growing up with a disabled sibling, where those on the outside may not view it as ‘normal’, which in their childhood and adolescence caused feelings of difficulty and embarrassment.

But with Jed and Karleen now in their late teens and early twenties, Karleen states it’s okay to have felt that way, and how that hardship of outer perception leads to inner gratefulness and joy:

“I think that it’s a learned process. As a child, there were some times where it would be hard, but to realize now that it’s okay that I felt those things—because it’s brought me to the point where I’m like, okay, I’m actually so happy, I literally would not change Jed any way at all. I’m so happy he is who he is because he’s completely shaped my life.”

“For those moments I experienced it [ableism], it was always without the presence of Jed. When I was with him, it was great! But I never for one second felt I wanted to change him, when I was with him.”

Supporting Jed Today

Karleen mentioned what she loves about Jed, and what they were up to this past summer:

“There are so many paths which conversations can go down, but what I love about being with Jed is that everything is just in the here and now.”

“He hasn’t been impacted by social norms whether they are chronological (milestones) or how you should act in a public space. Jed’s always found a way to just be himself and bring joy into everyday moments.”

“I worked as his community support worker this summer, volunteering at a restaurant at Fort Edmonton Park. He helped clear tables, polish glasses, and I got to hang out with him all day. He’ll be in the middle of the restaurant, cleaning the table when he starts dancing, or talking to this imaginary friend Gary, and you just let it happen. Because someone’s wanting to be their true self, when everyone else feels they need to put on this guard—I think that’s awesome, and something to learn from.”

“Our mom will also say the same thing, my mom goes on tangents all the time. She’s like ‘the next time I walk into a doctor’s office and see a development chart, I’m going to lose my mind! Throw away your development cards. There is no ‘proper’ way’, and that’s awesome.”

Sibling Advocacy in Education

Karleen also touched upon the challenges of finding the right educational fit for Jed:

“The education system is a whole other story. Inclusion versus what they call ‘Adaptive Education’. It was always a debate, because we want Jed to live a normal life. So, does he go to a regular high school? Or do we send him to a high school/junior high for kids who experience disabilities, but then we’re not engaging him with the outside world?”

“So it’s all about encouraging Jed to be in these spaces so that we can create a more equitable world. But some of these places are exclusionary whether they realize it or not.”

Sibling Advocacy Resources

Karleen is currently making a Facebook group about sibling advocacy that she would like to make public soon.

Karleen is also comfortable to be a resource for individuals who would like to know more. E-mail info@qicreative.com if you would like to reach out to her!

The Sibling Leadership Network is a non-profit resource providing siblings information, support and tools to advocate and promote issues important to their siblings and families.

New Normal - A written piece by Karleen Rutter reflecting on online school environments, the ableism of education systems and imagining more loving online environments based on Jed’s experiences in his online classroom.

Siblings of Children With Illness or Disability - Resources collected by Alberta Health Services