Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

When I was spending time in Southeast Asia I often heard this expression, “same same, but different.” I heard it in Thailand and Cambodia, mostly from store merchants, to describe two items that were similar, but ultimately unique. For example, if I was looking at two sets of coasters that had different designs, the person selling them would say to me, “same same, but different,” meaning, they are the same because they are both coaster sets, but they are different because they have completely different designs. This charming expression came to mind when I was thinking about siblings of people with disabilities across cultural groups. There are some feelings and experiences that many of us share regardless of our identities, and also our different cultural identities create opportunities for unique experiences that make our sibling community rich and diverse. This article will explore some of this diversity and also invites you, as the reader, to think about what is still missing and where we could go from here.

I first learned about the common experiences of siblings of people with disabilities when I was in my late-twenties in graduate school. The idea that some of my experiences, both joyful and challenging, were similar to so many others was mind blowing. It was exciting to learn that someone had done research about people like me and found that, statistically, we were more likely than people who did not have siblings with disabilities to experience feelings of guilt about being typically developing, to have high rates of achievement in school and career, and to have a hyper-awareness about the mortality of our parents. Many of us agonize about how our siblings will be cared for when our parents are no longer able to do so. As I learned more and more about the sibling research, I realized that I had some other things in common with these research subjects. Over 90% of us were White, relatively middle class, and female. Again, my mind was blown and I was also troubled. Why was this research pool so homogenous? Could we really say that siblings of people with disabilities have these common experiences, or should we really be saying that white middle class women who are siblings of people with disabilities have common experiences?

One does not need to look far to find that this lack of engagement with communities of color or poor communities in research is not limited to sibling research. Just Google, “lack of diversity in research” and you’ll see this is a widespread problem across several areas of research. You can find ample information from these articles:

• More than Tuskegee: Understanding Mistrust about Research Participation
• Why are Health Studies so White?  
• Diversity in Research Participation: Why it’s Important

Dr. Shaquinta Richardson recognized this disparity and aimed to build awareness and understanding about the experiences of Black women who have siblings with disabilities (Richardson, 2019). Specifically, she focused her research experiences on Black siblings in the southeastern United States. Dr. Richardson’s research is an important contribution to our community and calls for organizations serving people with disabilities and families to recognize the unique experiences of Black families.

Several themes emerged from Dr. Richardson’s research and they illuminate the importance of including Black families and other people of color in research, and broadly in the work of services, supports, and advocacy with people with disabilities and their families. Again, some themes mirrored what previous research about siblings of people with disabilities had found, but some concerns shared by Dr. Richardson’s research subjects seem unique to Black siblings. Participants reported that faith and the closeness of Black families, including extended family, played a major role in their lives. Additionally, as the women discussed their feelings about their identities as a sibling of someone with a disability, their Black identity played a big role in how they came to understand themselves as individuals and in relation to their siblings. Some participants discussed the historical trauma that many Black families, especially in the South, experienced and how that relates to their perception of the current challenges their families may experience because of society’s response to disability. Having to deal with negative stereotypes of Black women was a concern that was sometimes exacerbated by having a sibling with a disability. Some participants reported being worried that their siblings’ behaviors would be attributed to negative stereotypes about Black people and that they did not receive compassion from observers. Breaking down ableist stereotypes about what people with disabilities can and cannot do is a big focus in the disability advocacy community. How can we also ensure that our work fights against harmful race-based stereotypes?

Much of what we have learned about the diversity of our sibling community is through anecdotes and individual stories. We can honor one story at a time, but we must be careful not to generalize one story to a whole community. 

On a more personal level, while I share the White female identity that we find in the majority of sibling research participants, I am also Queer. As I started thinking about the possible variations in sibling experiences based on different identities, I wondered if there were other Lesbian, Gay, Bisexual, Transgender, Queer siblings out there and if any of them had similar experiences as mine. For many LGBTQ people, coming out to family and friends is something we anticipate and worry about, sometimes for decades. We know that many parents struggle with the news, and in the worst cases, LGBTQ people are completely disowned by family. For many siblings of people with disabilities, we feel pressure to never make waves and to avoid doing or saying anything that might cause our parents to worry. Coming out as LGBTQ can be hard for anyone, and for me, the biggest challenge was in knowing that I would be rocking the boat in my family. Some advice from Parents and Friends of Lesbians and Gays (PFLAG) says that LGBTQ people should consider timing when coming out and not bring it up when there are other difficult things happening in the family. So what does this mean for people who are in families where crisis is the norm?

In 2017, the Sibling Leadership Network established a committee to address diversity and social justice issues within sibling communities. The Diversity and Social Justice Committee (DSJ) wanted to raise awareness about the lack of diversity in sibling research and supports and identify strategies that could help us be more inclusive. On this journey, we began to learn more about the experiences of siblings of color, siblings from immigrant families, siblings of religious minorities, LGBTQ siblings, and more. We learned enough to know that we have so much more to learn.

One major outcome of the DSJ work was the first Sibling Multicultural Roundtable in 2018, which brought together a diverse panel of siblings to talk about their experiences. Their discussion was illuminating about how these siblings saw their role within the context of other parts of their identities. You can also find information directly through the Sibling Leadership Network website .

One panelist of the roundtable identified as Japanese American and talked about the lack of acknowledgement of psychiatric disabilities in her household because of cultural beliefs about disability. One Jewish panelist discussed the challenge of finding a group home for his brother that was Kosher and kept Shabbat. Another panelist identified as Latina and discussed her family’s inclination to isolate themselves and not connect with other families that had members with disabilities. Two panel members discussed their own disabilities and the lack of representation they felt regarding the reciprocity and strength that defines the relationships they have with their siblings with disabilities.

Many people who are not reflected in mainstream media have taken it upon themselves to find other ways to share their stories and experiences through social media and other forums. One example of this is the website Autism Articulated , which was created by Michelle, a Ugandan-American who intentionally curated a diverse group of stories of people, including many siblings, who are personally familiar with autism. The values stated on her website say, “Here, representation matters — from the minorities who are less likely to receive specialty care, to the siblings with relationships to mend, to the tireless advocates changing lives for the better.” Additionally, in the 2018 documentary, Intelligent Lives , we meet Naomie, a Haitian-American woman with Down Syndrome, and her family, including her brother Steve. We see a glimpse of Steve’s story and learn that he is one of Naomie’s primary supporters and he ends up being an interpreter for Naomie’s parents, who emigrated from Haiti and do not know English. All the while, he is trying to forge his own way as a rap artist.

Much of what we have learned about the diversity of our sibling community is through anecdotes and individual stories. In the absence of comprehensive research that includes a broad demographic of research subjects, we can honor one story at a time, but we must be careful not to generalize one story to a whole community. Through all of this, we are learning that siblings of people with disabilities, regardless of cultural background, do have some similar experiences, such as having high expectations of ourselves, having heightened concerns about the future, and wanting our unique needs to be seen, but there are also nuanced differences within families across cultures. Ultimately, we are left with more questions than answers and my hope is that this sparks curiosity and action to learn more about this beautifully diverse community of siblings.