Observations From Below: My Brother’s Keeper

It is well understood that the relationship between siblings is often a strong and unique bond. Sometimes you hate them and the other times you love them. Even though I don’t technically have any siblings, I have a large and very close family which helps me to understand that type of connection. My many maternal cousins have all grown up with me, so they understand me even more so than the other members of my family often do. My oldest cousin is the closest thing to a brother I’ve ever had. I was born when he was 6 years old, and because of my disability I had to stay in the hospital for a few extra months. From the beginning he took an interest in me, and still owns the medical outfit that was required to come visit me while I was still in the hospital. With my grandmother’s help, he would track my weight, knowing that as soon as I weighed as much as a five-pound bag of sugar, I would be able to come home.

I have written blogs in the past about how my cousin’s playing with me gave me the chance to exercise. Playing the Teenage Mutant Ninja Turtles game with me allowed me to stretch my arms and legs, as well as making it fun to exercise while he pretended to be the bad guys. He continues to be a major support in my life. I was in his wedding party, and he designed for me my very own logo, website, domain name and address to help support my blog.

My oldest cousin is far from the only sibling-like family member that I have. I also have a female cousin, who at one time made the suggestion to someone gawking at my wheelchair for too long that if they liked it so much, she would be happy to put them in one. Much later in our lives we attended a college lecture together. The lecturer happened to say that he wanted to have everyone move closer to him. My cousin murmured to me, “Don’t get up.” You should have seen the evil glare the other attendees gave her, and you would have thought it was the meanest thing they ever heard. We had to explain that we are related and that we have that kind of relationship.

I also have a strong relationship with my cousins who grew up far away from me. We have a tradition where we always go for a walk after Thanksgiving dinner. For a couple of years, it was fun for them to put on their roller skates and let me tow them while in my chair. I also invited them to summer camp with me to a place called Camp-Abilities and we still talk about those days fondly. Having all these siblings is probably one of the reason I adjusted to my disability so well.

Dr. Dean Ornish is a world renowned physician, and best-selling author of six books promoting positive lifestyle changes through healthy living and psychological/stress-free meditations. He’s published reports on family support, and has found that a strong unit or group of friends is one of the most reliable predictors of happiness that helps promote optimal health. Several states have recognized the need to foster and support a strong sibling relationship, and that it benefits both the person with the disability and the sibling alike.

First In Families of NC (FIFNC) have recently partnered with the NC Counsel of Developmental Disabilities to form a state branch of the Sibling Leadership Network (SLN). This network helps address the unique challenges associated with having a sibling with a disability. Very often, the sibling eventually takes over the care of the aging parent as well as the sibling with I/DD. The transition is sometimes abrupt, so the SLN is meant to aid and provide assistance during what could possibly be a difficult time. The NCSLN hosts social gatherings and support groups across the state and provides information on important disability policies. These policies include alternatives to guardianship, financial literacy, and other general support. The NCSLN currently has about 35 members and is trying to grow. The SLN’s definition of a sibling is broad, and includes but is not limited to those such as a brother, sister, cousin, sibling-in-law or a close friend with whom the person with a disability has built a sibling-like relationship.

That’s how me and my cousins roll…

For more information, please contact Bryce Coleman at: bryce@fifnc.org

To learn more about the Sibling Leadership Network and the First In Families of NC programs:
http://fifnc.org/programs/siblings.html
http://siblingleadership.org/about/
http://www.meetup.com/ncsiblings/ (The NC/Durham Chapter)