I have a brother with an intellectual disability. As we grew up together, it was clear that we experienced different sides of Canada. As we got older, it became even more obvious that our country is not built for people with disabilities.
My brother’s day-to-day life should not be defined by stigma and discrimination. For myself and many siblings like me, this is obvious.
You’d be shocked by how many people in Canada don't see it that way.
Being a sibling advocate means seeing your sibling as a person, not a problem. It means telling other people that your sibling has as much a right to every place, space, and experience as every other person in Canada.
This isn’t an easy thing to do.
Here are a few tips that have helped me in my journey to advocate with my brother:
1. Listen
Advocacy always starts with your sibling. Your advocacy efforts should reflect what your sibling wants out of life.
This can sometimes be tricky. For instance, my brother has very limited communication skills. It’s hard to discern how he’s feeling or what he wants in the long-term. Regardless, it is clear when he likes or does not like something and he makes his wishes known to everyone around him.
Over our 30+ year relationship, I’ve developed a good sense of what he wants and what he values by listening to these cues and trying to understand the world from his perspective.
Listening is the most important part of advocacy. It’s essential that you’re advocating with, not on behalf, of your sibling.
2. Get Involved
For most of my life, I did not advocate for my sibling. We had a relationship as brothers that did not extend past our home lives.
We grew up in Ontario, where inclusive education is not a best practice in our public school system. We went to different schools, had different peer groups, and completely different learning experiences.
As a result, I wasn’t there for him all the time. This may not be the experience of every sibling; depending on where you live in Canada, your childhood may have been more intertwined through school, work, and play.
It wasn’t until my mid-20s that I started to get directly involved in combating some of the injustices he faced on a day-to-day basis.
It’s hard to get involved in advocacy. It means taking a stand and asserting yourself in a new space that’s not your own.
When talking about siblings, it often means making your parents treat you like an adult instead of their child. This is easier said than done.
However, you can play an important role in your sibling’s life. Does your sibling need support in certain aspects of their life that your parents assist in but you could see yourself doing? Ask to get involved and make yourself part of the process.
Play to your strengths, and do what you can to help them build a life of their own.
3. Embrace your Expertise
When I speak to other siblings, one of the common experiences I hear is that their parents don’t want them to be involved in “that part” of their sibling’s lives. This comes from a place of love – they don’t want their children to be affected by the constant battle for disability inclusion.
The truth is, you will be involved in this fight, whether you want to or not.
Life happens. Parents can’t always be there. At some point, you will play a central role in ensuring that your sibling has a good quality of life.
This may sound daunting, but you’ll be ready for it.
You grew up with your sibling. You know what they want out of life and what they value. You’ve spent a lot of time learning their likes and dislikes simply by experiencing life with them. You are an expert.
Be confident in your relationship with your sibling. You were in their corner all along; communicate that to support them in pursuit of a good life.
4. Connect
There are some great networks and tools available to help you figure out what your own advocacy can look like.
Siblings Canada offers several resources and opportunities to connect. As one of the leading organizations for siblings of people with a disability in Canada, it’s a good starting point to connect and learn from other siblings.
Right now, they are offering peer-to-peer mentoring and regular group sessions where you can speak to and learn from other siblings on their own advocacy journeys.
23% of Canadians identify as having one or more disabilities. Many of those 8.5 million Canadians will have brothers or sisters.
Find and connect with them. Build a network that can support you and your sibling.
5. Be Vulnerable
Having these conversations is not easy or comfortable, but this is by design.
They do not feel easy or comfortable because of how society perceives and treats people with disabilities.
Disability is not a comfortable subject. People would rather ignore the problems than find and discuss the solutions.
As a sibling, you know better than most people the discrimination that people with disabilities face.
Embrace discomfort. Make other people uncomfortable and get them to see the world from your perspective.
This gets easier with time, and you’ll be surprised by how naturally these conversations will come to you with practice.