The excerpt below is from our webinar “Strengths and Challenges for Siblings of Individuals with Duchenne” with guest speaker Emily Holl. Emily Holl is the Director of the Sibling Support Project. Click here to listen to the full episode.
If you spend enough time talking to siblings and reading sibling research as I do, you recognize that there are siblings who say, “Yup, having a sib with Duchenne is like the greatest gift I could ever have. Having this unique experience has fostered my compassion and tolerance and flexibility and resilience and all of these wonderful traits.” That is definitely true of many, many siblings.
On the other hand, you have siblings who say actually “the reason my life is all messed up is because I have a sibling with Duchenne. This has not been a great experience.” But for the vast majority of siblings, it’s not all one or all the other. It’s all of the above, right? It’s the Super Jumbo Combo on any given day…
So today we are going to talk about siblings, unique concerns and unique opportunities because they think it’s really important to recognize that siblings experience both.
And you know, the truth is, it really is a mixed experience… kind of like life for all of us.
Tolerance
For siblings, “diversity training” begins 365 days a year, even before breakfast. Siblings know what it’s like to live with someone who’s considered “different” by society. And siblings are pretty apt to recognize that, wow, society doesn’t always make room for differences the way it should... unfortunately.
And siblings too often have seen the consequences of prejudice and don’t like that. They tend to be very adept at not only making room for differences, but really meeting people where they are and recognizing people for their also strengths and abilities. If the rest of the world could be as tolerant as most siblings are, it would be such a different place, I think.
Advocacy
Siblings are natural born advocates, both formally and informally. So a lot of siblings may find themselves working maybe at an organization or an association that supports and advocates for people who have the same diagnosis as their sibling. But they may also in informal ways.
You know, siblings are often like the person who, if there’s a new kid at school sitting by themselves at lunch, the sibling is the person who tends to go over and sit with them, right? Or maybe that new kid is being teased at recess and maybe the sibling goes over and says, “Hey, do you want to play with me instead?” and helps to remove them from that situation.
Siblings just tend to be very naturally predisposed to advocating for and with anyone they see as being slighted.
