About 3 years ago, I was reading an article posted on The Mighty’s website about a letter written from a mother to her daughter. The mother had a son with disabilities, and a typically developing daughter, and she wrote to the daughter about how she saw what good care the girl took of her brother. Having a brother with intellectual and developmentally disabilities myself, I really connected with the letter. As I read the comments, another sister of a person with disabilities commented and I realized there were other people like me who existed on the internet, and in the larger world too. Obviously it made sense that there should be, but I had never thought about the fact that there were other people who would have had similar experiences to the ones I had growing up with my brother.
Growing up, I was not in contact with other siblings of people with disabilities, or sibs, but when I found that there are groups of sibs that talked about their similar experiences I knew I wanted to be a part of that. I quickly found Sibnet on Facebook, a closed group for sibs only. No parents, no grandparents, aunts, uncles, curious neighbors or random people. Sib-in-laws are allowed (the spouses of sibs), but no one else. It’s a safe place where sibs can share stories, hard times, and victories- big and small. We are sharing with a group that “gets it” without fear of offending parents or others, or being judged by people who don’t have the same perspective.
As I scrolled through the posts on Sibnet, I read so many other peoples’ stories that made me say “Me too,” or “I get that.” Being a sib is an interesting thing. Our sibs have various abilities of course, but so often our stories are still similar. People taking care of their sib, many having more of a parental role than a typical sibling role. Wondering about what to do when the parents are gone, and we are left in charge of supporting our brother or sister. Feeling frustrated when parents want to protect our siblings too much, and have a hard time challenging them to do the most they are capable of doing, with the appropriate supports in place.
As I kept looking into this Sib thing, I found the Sibling Leadership Network (SLN), which is a national organization devoted to sibling support, and S.I.B.S., which is a state-wide group here in Illinois that also supports sibs. While most of their meetings and gatherings are currently in and around Chicago, there is hope to have some meetings in the southern part of the state next year.
Being a sib is a big part of many people’s lives. Being aware that there are others who understand is helpful for so many groups of people and it is helpful for our group of siblings too.
Shout out to you for discovering our network on the world wide web. When we’re caring for or working with other family members to care for our sibling, we aren’t thinking about seeking help for ourselves. And I think this is because most people wouldn’t normally share their sib experiences with just anyone. It’s sort of like the thing where you share something important with someone who cares and understands about you.
Lately, I’ve been telling people about my brother without thinking that I need a special relationship or connection with this person. Just the other day, I told someone while waiting on line at Trader Joe’s that I have a brother with autism after she asked me what I do.
I’m his home attendant, I responded.
Happy to further connect + I’m thankful for the Sibling Leadership Network that connects me to stories from other sibs’ like yourself.
Ariam Alula, Bronx/Manhattan NY