intellectual disability

Cosmic Injustice

A topic we haven’t talked specifically about yet over the past few months has been sibling amiability. In some of the interviews that we have conducted, there is this notion that the sibling that will be taking on the caretaker role later in life does not actually have an amicable relationship with his or her sibling and yet takes on the role regardless. We spoke with a young man, George*, in LA about this struggle.  George is a philosophy PhD candidate as well as a J.D. student at UCLA. He is eloquent and reflective and was a pleasure to speak with about his younger brother.  George’s brother is one year younger than he and has an intellectual impairment. In the beginning of our interview with George, it appeared that he and his brother had a pretty decent relationship. He said they fought a lot as kids, but most brothers do, and that he doesn’t think he was “traumatized” or “burdened” by the experiences he had growing up in his house.

Here is where his story gets increasingly interesting. George talked a lot about how he doesn’t think that his brother really likes him. He told us that if something were to happen to his parents and his brother had to move in with him, he would be okay with that situation but he doesn’t think his brother would be too happy.  He even told us that his brother has connected more with his friends and girlfriends and if his brother had to move in with him, he might have to use one of them as a mouthpiece while he acted as a “man behind the curtain.” He told us that his brother is “really good with people, just not me or my dad.” We tried to dissect this a little bit more. George told us that growing up his dad was always the disciplinarian in the house in comparison to his mom who focused more on providing a loving, calm household. George confided in us that he often sided with his father's view that manners should be stressed and healthy regimen should be implemented when possible. He believes that his brother is high-functioning enough to have had more responsibility than he did have growing up.

What’s fascinating about George’s story is not only how much of his life George is willing to alter in order to take care of his brother should that have to happen but also how hard George is going to have to try to gain some of his brother’s trust and try to make a relationship with someone that is clearly not interested in making a relationship.

His philosophy student self came through by the end of the interview when he concluded that the whole situation is really a “cosmic injustice.”

Ellie

*name has been changed

Speaking from Experience

From now on, when I think of truly honest people, I will think of Renee S. In Chicago, we met with Claire’s friend’s mom and I can definitely say that the next time I am in Chicago, I will be taking her out to coffee. She spoke with eloquence and integrity about her older sister whom her parents always described as “slow” and was determined to have a very low IQ when she was five-years-old. Though incredibly high-functioning and extremely emotionally intelligent, doctors told Renee’s parents that her sister should be institutionalized because she was, as characterized then, mentally retarded. However, her parents refused to send their daughter to one of these places. Most of this negation of that option came from the fact that Renee’s parents were both Holocaust survivors. Though slightly unrelated to her experience as a sib, below is a description of how she thinks that her parents background affect their parental choice.[youtube=http://youtu.be/v7ze5tgisog] Even though there was a five-year age gap between she and her sister, her mother insisted that they flourish “like twins,” buying them the same outfits and pressuring Renee to take her sister with her whenever she went out. 

Even after she got married her mother still had the feeling “whatever I had, my sister should have.” Now that both of her parents have passed, Renee is her sister’s legal guardian. After many years, she has built the courage to find a life her sister is a large part of and a life that is not centered around her sister. She finds her sister activities and takes her out every week and plays a huge role in her sister’s caretaking. “I know that it is up to me and there is no one else and I have to do it,” she told us. In her interview, she called this distinction selfishness, but I commend her for her bravery in taking up more space, something she was unable to do during childhood. It is even more exemplary to note that she does all of this by herself, as her older brother is rarely in the picture regarding helping her sister. She has taken her challenges in strides. In this next clip, Renee talks about how difficult it was for her to always be looped into the same boat with her sister. 

She also told us about her parental communication regarding her sister. 

Now that she is in this caretaking role, she also confided in us about her goals for the future regarding her sister, aside from the common difficulty of finding the correct housing situation for her (right now, her sister lives in her late parents' house with live-in care).

Another incredibly interesting note that she had to offer was how she explained her sister to her four boys. Actually, she told us she didn’t have to do too much of the talking at all, because of this story that occurred when her boys were in middle school that helped acclimate their knowledge of their aunt. [youtube=http://www.youtube.com/watch?v=BpebSP0mqVE]

As a sib, we hope more people can hear Renee’s story, because this blog post definitely does not do it justice. She, too, highlighted the need for our project, exhibited in this clip below. 

We absolutely loved hearing Renee’s story and going out to a real, Chicago-pizza dinner with her family afterwards.

Ellie

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

1 Household, 2 Perspectives

About a week ago we met with a family in the suburbs of Atlanta. The mother adopted  their eleven-year-old daughter when she was four years old from a special needs orphanage in Nicaragua.  Their daughter has a non-malignant tumor in her cerebellum that affects motor and cognitive functioning, variants of the Dandy-walker Syndrome, traumatic brain injuries from early childhood, and a brain atrophy from malnutrition from before she went to the orphanage. Although she has no behavioral issues, her IQ is very low and she functions at a kindergarten or 1st grade level academically. We spoke with all three of her siblings, two of which are step-siblings. I (Ellie) will be covering her full sibling and Claire will talk about one of her step-siblings. The first daughter we spoke with is 7 years old and, as her mother described, at the opposite of the intellectual spectrum as her older sister. She is part of the talented and gifted program at her school and functions at levels beyond her grade level in school subjects. When we asked her about her relationships with her step-siblings, she was very detailed and animated in her descriptions of how they interact together. However, when speaking about her older sister, she was less articulate and unsure of how to depict her relationship with her. She told us that, in referring to her sister, “she sort of understands stuff I say” and “she reacts different than me and I don’t really know what to do.” She said that “it’s different” to play with her other siblings than it is to play with her older sister. “She has a different life sort of and I don’t really know what to do,” the seven-year old told us.

The mother of the family assured us that this seven-year-old will not be her sister’s caregiver later on in life. In contrast to the other child interviews that we have conducted thus far, this girl did not have unwavering positive attitude regarding her sister, which is something I identified with. It was clear from our interview that she doesn’t regard her older sister with buckets of love and compassion and she still isn’t completely sure how she fits into her life. Though so young, she is still figuring out how to even talk about her sister, something I am still having trouble doing. I think that it is important that we have more of these diverse interviews, those that push us to think harder, widen our information pool, or even make us uncomfortable. From this interview, we can really see how sibling resources are vital, so that girls like this one can learn to talk to people about their siblings and gain support from those that understand her.

As Ellie explained, I will be blogging about the 12-year-old stepbrother in this family, who I'll be calling Peter in this post. I want to start by saying that Peter was certainly the most mature, thoughtful, and thoroughly kind 12-year-old boy I have ever met. We'll never know if Peter was naturally this way or if his experience as a sib had shaped him in this positive way but it was clear to us almost immediately how much time Peter spends thinking about his stepsister.

At first, when we asked Peter to describe her, he noted that she was extremely kind, happy, and was able to get along well with people, a trait his other sister also noted. However, later when we asked Peter about if he ever worried about her, he noted that he often envisioned her as a wounded gazelle, in his words "she is hurt but she can still fend for herself". Renee, Ellie, and I were all blown away by this thoughtful response as we had all been expecting a much less colorful yet accurate response than that.

Despite the fact that the siblings don't talk to each other that much, Peter told us that he would "hug her every now and then" and would help encourage her to socialize with her sisters and with her classmates. When we asked Peter a general question about the future, he quickly made it clear that he already thinks of how he will continue to support and encourage his sister as they both age and mature. As with most young sibs we've talked to, Peter had not spent much time talking to other sibs about his experience, though he did tell us about his friend at school whose younger brother is in Peter's grade and has a disability. Peter told us that he's very good at including this boy, whom he considers to be a good friend, and always makes an effort to sit with him at lunch and socialize with him in general. I don't want to over do it in my praise of Peter, but there certainly weren't that many 12 year old boys at my school that made an effort to include kids who struggled more socially so his tale of inclusion definitely warmed my heart.

We always close each interview by asking the sibs to tell us one question they would want to ask other sibs. Often, sibs ask Ellie and me to share our "sib story". Peter surprised us by asking the following:

"What would it like to be Mary* for one day, how would it be to think like her or just be like her, to think like her, to see like her, to see everything in a positive way but still not be able to do that thing?"

I am so grateful for the opportunity to have met and talked with this young man and to have gotten the chance to hear his wise-beyond-his-years comments about his relationship with his special sister.

Ellie and Claire

Sibling, Mother, Daughter

In between our New Orleans and Atlanta stops, we had the opportunity to interview an amazing woman, Karen Driver. Karen happens to be both the sister of two individuals with disabilities as well as the parent of a child with cerebral palsy. See the clip below for Karen’s description of her multi-layered connections to the disability community as well as her leadership role in providing services there.

Clearly, Karen has had a lot of experience navigating the often complex world of disability as it relates to her own life as well as her relationships with her friends and family. My first impression of Karen was overwhelmingly positive. Here was a woman who had driven an hour from her home to meet up with a few college kids and share her experiences with us and she was just so kind from the get go. Because of this, I was interested to hear that when she was my age, she had a pretty poor relationship with her siblings. The youngest of the crew, she described her bond with her brother and sister as not affectionate and also has had to deal with the fact that her older sister has chosen to not join in the caretaking of their two disabled siblings. As many sibs do, Karen often struggled with thoughts of who would care for her siblings after her single mom passed away. See below for her poignant description of these conversations with her mom.

Throughout our interview, Karen touched and elaborated on the differences between her family growing up and her current family unit of her typical daughter and atypical son. One thing that seemed extremely important to Karen was how affectionate and loving the family was able to be, given the presence of disability or difference. Also in this clip, Karen makes the comment that the sibling experience is a journey, which made us so excited to see this new double meaning to our blog title!

Given her very positive attitude today about being a sibling of two individuals with special needs, I was surprised to learn how bad her home life had been at some points. Specifically, during her brother's teenage years, he developed some more intense behavioral problems. When we asked her how that compares to how she balances her family members today, it became clear how much of a delicate balance Karen attempts (and almost always succeeds) to have between all of her responsibilities.

Something that many siblings have confided to us is that even if they are the younger sibling, they often wind up functioning in the role as the older sibling. I had the intuition that we had a very wise woman sitting with us so I thought I would ask her thoughts on this issue as the "baby" of a family of four. See below:

Another thing that both Ellie and I have encountered is people telling us that we are very mature for our age. I remember getting this comment, especially when I was younger and around my parents friends. When people told me that, for whatever reason, I never took it as a compliment. It always made me feel like I had failed at presenting a carefree front to them. Karen also spoke to how both she and her daughter often get told that they have "old souls". As she did with so many other topics, Karen was able to present this comment in a positive way that I hadn't thought of before. She explained that to her, being mature for her age meant that she just realized earlier in life the things that just don't really matter. Later in the interview, she elaborated on that by saying that being the sibling of someone with special needs has allowed her to let go of what other people think and start enjoying living her life much earlier than her friends who have not gone through that experience.

Karen's interview was certainly a source of inspiration to me as it made me reflect on how much can change and develop in a sibling relationship over time. Growing up, there were moments where I worried our relationship would be frozen in whatever was its current state. Talking with and listening to Karen began to help me shift my thinking about our relationship to a more evolutionary and ultimately hopeful perspective and for that, I am forever grateful.

Claire