Female Sibling

The Sibling Leadership Network, brought to you by a co-founder and the current executive director

Through the extensive network of sibs, we were put in touch with Katie Arnold and John Kramer, two individuals who have been extremely involved in the leadership of the sibling network. John has twin younger brothers, Matt and Mike, who both have disabilities. One has Spina Bifida and the other has Cerebral Palsy and Pervasive Developmental Disorder. He is the outgoing Chair of the Sibling Leadership Network (SLN) and a co-founder of the organization. He is currently the treasurer and a co-founder for the Massachusetts Sibling Support Network. While he was doing his graduate work at the University of Illinois he also helped to co-found Supporting Illinois Brothers and Sisters (SIBS).

Katie is one of five, and one of her younger sisters has an intellectual disability. She is the first Executive Director for the SLN and does this part time as the organization is growing. Katie has also been a part of SLN since its very beginning and the national headquarter of the SLN is hosted by the Institute on Disability and Human Development at University of Illinois in Chicago where Katie works.

Listen as Katie discusses the beginnings of the Sibling Leadership Network and the first national conference:

In the clip below, John talks about his motivation for co-founding the groups and the angle with which he approaches the disability community.

Katie has been working hard to build momentum for the Sibling Leadership Network and believes that the sib community has a lot of potential to influence change

"For the most part siblings are often overlooked and kind of forgotten, so that's really motivated me to try to build the awareness of the importance of the sibling experience. I've been motivated by trying to get more siblings involved in the work of the disability advocacy movement. I feel like a lot of siblings get that from their family experience, but they aren't always tapped in and involved in the larger disability advocacy movement and I feel like there's a lot of power and potential if more siblings got engaged and involved."

We asked Katie about any advice she might have for a sib who is struggling to get information and start those often difficult conversations with their family.

"There's also a potential for conflict." She says it can be difficult because everyone is going to have different opinions about what is best and there's certainly potential for the conversations to get pretty emotional. "As tough as it is to start, once you start, the momentum will build and it will get a lot easier over time. I know that's happened with my own family." Her family only really meets to talk about it twice a year, when they have a family dinner centered around those conversations. "Just having those two more formal times has really opened this door for our whole family to feel more comfortable talking informally throughout the year and it's helped us all really think about things that we weren't able to before and that's really built over the years."

The SLN presents at a lot of conferences all over the country and talks to a lot of parent groups, just sharing the sibling experience in general so parents have a better insight and awareness from a larger context. They also speak with professionals working in the disability field about ways to engage and work with siblings.

In addition, the SLN has a set of curriculum and resources that is has developed.

Like Katie and other leaders of the SLN, I believe that there is a lot of potential within the sib community to promote positive change (both political and social) around what it means to have a disability and how those individuals and their families are thought of and treated. I was curious about the more specific policy work that the SLN has worked on, and here's her response:

To learn more about the Sibling Leadership Network, check out their website at www.siblingleadership.org.

Renee

Three Women, Three Perspectives

When we were in New York City, we had the pleasure of conducting our first-ever group interview. The women that we interviewed were all members of a group called SibsNY, essentially an organization formed by sibs, for sibs that tries to connect sibs to one another and provide them the support and advice that they might need. Here's a short profile of each of our interviewees:

Lindsay: a math teacher from Staten Island, part of a family of four, with a younger sister named Julia with microcephalia (a condition where the baby's brain stops growing while in utero) which has led her to have pretty severe impairments throughout her life. Lindsay's sister is currently in a day program and community residence on Staten Island.

Cecelia: also one of four, with a younger brother with Cerebral Palsy and a developmental disability. Has two older sisters but both of them are much less involved than she is with her brother. Brother currently lives at home with her mom who is now 90. The brother's disability was always kept very hush hush, even within the family.

Mary*: also one of four(!),has an older brother, a younger sister and a younger brother. Currently a child psychiatrist in NY. Older brother was never formally diagnosed with anything but has mild to moderate cognitive deficits, social deficits and is emotionally immature as well. Brother has married twice and currently has three children.

*Name has been changed.

**Because not all of the women were comfortable with video recording, this blog post will be spliced in with audio recordings rather than video.

When asked to describe their relationships with their sibling, the women had very different responses for us. Lindsay described how despite the fact that Julia doesn't call Lindsay or sister and can't verbalize her feelings towards her, she knows that their relationship is valued and special by the way Julia lights up when Lindsay walks into her program.

Cecelia struggled more with this question. Because her parents were so set on the idea that having Bobby as a brother should not influence their quality of life, the siblings often left him behind in order to lead their own lives. Cecelia recently realized how detrimental an effect this had on Bobby and has since thrown herself wholeheartedly into improving Bobby's self-esteem and emotional health. Listen here for her depiction of her family life:

 

[soundcloud url="http://api.soundcloud.com/tracks/99713926" params="" width=" 100%" height="166" iframe="true" /]

The quality that most influenced Mary's relationship was the sheer intensity of that bond. Because she was born immediately after her brother Mike*, the direct comparison between the two of them was inevitable. While Mike was floundering a bit academically and socially, Mary was valedictorian, held many leadership roles and always felt that she needed to be the "reliable one" or the "one who could get things done".

[soundcloud url="http://api.soundcloud.com/tracks/99863929" params="" width=" 100%" height="166" iframe="true" /]

What was so fun about this interview for me is that it truly was a conversation among sibs instead of a more structured interview. One of us would pose a question and then the sibs would take it in whatever direction they wished, bouncing off one another's ideas. One place where there seemed to be a lot of common ground was when we asked the sibs what was valuable about having a sibling with special needs. While each sib struggled to delineate what was caused by being a sib as opposed to just their personality, they all mentioned that they believe that being a sib had made them more compassionate. Each woman added their own personal qualities that they attributed to their experience as a sibling as well:

Lindsay: [soundcloud url="http://api.soundcloud.com/tracks/99783279" params="" width=" 100%" height="166" iframe="true" /]

Cecelia: [soundcloud url="http://api.soundcloud.com/tracks/99783672" params="" width=" 100%" height="166" iframe="true" /]

Mary: [soundcloud url="http://api.soundcloud.com/tracks/99783190" params="" width=" 100%" height="166" iframe="true" /]

Finally, I want to leave y'all with something that Mary said. She spoke beautifully about how sometimes what a sib wants most is to be seen outside their role as a sib. [soundcloud url="http://api.soundcloud.com/tracks/99788157" params="" width=" 100%" height="166" iframe="true" /]

Bringing sibs together to share their experiences with one another was always one of my goals for this project. Getting to watch that connection happen right in front of us was inspiring, thought-provoking, and gave us even more fuel for our sib-fire.

Claire

Wise Words from Adults

One of the cool parts about the interviews we've done has been the range in ages among sibs. We've talked with people our own age, with some younger children, and with a few adults. Though we have loved talking to everyone and are so appreciative that people are willing to open up to strangers, we are especially appreciative of the adults who have reached out to us because their experiences are able to provide us with crucial perspective about how the stigma around having a disability and the experiences that come with being a sib have evolved over the years. We spoke with an adult in North Carolina who was originally from Canada and one of fi children. He shared that when his younger sister was born with Down Syndrome, the practice at the time was to either institutionalize the child or put them in foster care. His family chose the latter option, which meant that his sister was living in another home with a foster family. Though she was still part of the family and they visited frequently, it was confusing for him as a child. His wife observed that all of his siblings have chosen a helping profession and that it might be related to having a sister with a disability.

One of the women we spoke to has an older brother who is developmentally delayed. As a nurse, she did one of her rotations at a state school. She was horrified by the quality of care she encountered. According to her, many of the men there with intellectual disabilities were forced to be the caretakers of the other individuals at the facility. That experience helped her appreciate how fortunate she was to have her brother living with her family at home and provided us with an important historical perspective for understanding the relationship between adults and their siblings during their childhood.

Although the services offered for individuals with special needs and their siblings and family aren't perfect, these interviews, along with Karen's interview (found here), have allowed us to appreciate how far services have come. They've been able to provide important insight into how sibling relationships can evolve over time. Karen, for example, didn't have a great relationship with her two siblings growing up - they loved each other, but they often didn't show it and weren't very affectionate - but now that she and her siblings are older, their relationships have transformed into more affectionate and closer ones. Many of the younger sibs we've talked to have expressed fear or concern about future plans for their siblings when their parents can no longer support them. Talking to older sibs has allowed us to have a better idea about what lies ahead.

Renee