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.
Vocation
A lot of us sibs find our way into helping professions. If it’s not necessarily advocacy, maybe a lot of us become teachers or work somewhere in the field.
I know a doctor in Connecticut who has a brother with spina bifida. He said that the reason he became a doctor was because he and his dad brought his doctor to the emergency room one day. I won’t repeat what the attending Doctor said, but he said something really negative about people with disabilities.
The now-doctor in Connecticut said “from that point on I vowed to become a doctor and to treat all of my patients with kindness and respect.” And he has in fact gone on to do that. I get goosebumps when I hear that story. He’s just an amazing human being.
Inspiration & Pride
Many of us are inspired by the grit and resilience that is demonstrated by our siblings who go out into the world every day – into a world that isn’t always so accepting of people who are considered to be different.
I almost hate to talk about inspiration because there are those who take it to really an extreme to the point where it’s almost belittling. To be so inspired by our siblings or people with disabilities in general, not recognizing that well, we’re just people kind of living our lives. We’re just people doing our best every day to put one foot in front of the other figuratively, just like everyone else.
But still, when I think about the resilience and grit modeled by so many individuals who are not treated the way they need to be treated by society, I think that’s pretty impressive.
As much as our relationships with our siblings might look different, we tend to take tremendous pride in those relationships and in each other’s accomplishments.
