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.
Distinctive Qualities of Duchenne Siblings
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.
Maturity
I think of maturity as the flip side of all that increased responsibility. As a result, you develop a maturity that you often know that is different from that of your peers. The idea that life has many facets and that the human experience, the human condition, what it means to be a human being, is a lot of different things.
Even our youngest siblings at sib shops talk about “what does it mean to be a friend?” Is a friend someone who teases people with disabilities, even if it’s not your sib? Well, probably not.
We talk about the litmus test in the SIB community. that depending on how our friends or maybe potential partners respond to our siblings, it tells us a lot about who they are and whether or not we want to keep them in our lives. So our siblings are kind of a litmus test for who we want to let into our circle.
Appreciation
Next is opportunities for appreciation for our families and loyalty.
Look at what we’ve been able to face together and look at who we are as a family as a result of just having each other’s backs, and just having that unconditional love for one another. So those I think are the opportunities for appreciation.
You know, we’re not perfect, but we have each other, and we’ve been through a lot together, maybe a lot more than some of our friends’ families can even think about.
Humor
Humor and laughter is really good for us, right? The research tells us laughter is good for our health, our social contacts and connections.
Humor is a big part of how many of us approach the world and cope. Siblings are great for breaking the ice and lightening the mood when life just gets too heavy.
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.
More To Consider…