Children With Disabilities: Understanding Sibling Issues

"I Never Figured You Were Disabled" - A Sister's Experience

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for Children and Youth with Disabilities

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In the article which follows, a sibling with a hearing impairment discusses her experiences as a sibling with a disability, her interactions with her brother, and how she has learned to cope.

"I just don't have a picture of you being disabled," my younger brother muses as we discuss growing up. "There was never a suggestion in our parents' voices about 'your disabled older sister.'" I am writing as a sister with two invisible disabilities: a moderate-to-severe high frequency loss in both ears, which causes my speech to slur consonants, and the functional use of my left eye to restrain my weaker right eye from producing double vision. These conditions result from my premature birth at six months.

Although my visual and aural disabilities aren't severe, they've affected the way I communicate with my brother and react to him. Since I pick up my aural information from lipreading with one faulty eye, I don't trust the information I receive. This leads to a general mistrust of all my perceptions and a dependence on others for making decisions instead of trusting my sense of inner truth.

My family refuses to think of me as "handicapped." This encourages me to challenge myself academically, but this denial doesn't acknowledge or respect how faulty communication impairs the first impression which influences so many interpersonal and business relationships. Denial colors my brother's one clear memory of my hearing loss. He remembers, "The one thing that bothered me the most was when I had to repeat things. It seemed kind of selective. If I whispered, "There's ice cream in the freezer," you'd hear me, but not if I said, "It's your turn to do the dishes tonight.""

I have other memories. My brother has a great sense of humor, which he displays in teasing with a deadpan face. I would often be furious at some "joke" and would yell at him, completely missing the vocal inflections that relay the "humor." And other kids' reactions to my speech and hearing loss have led me, for many years, to interpret all teasing, laughter, and whispers as being directed against me. I come from a traditional family that gave the younger son much more independence than the daughter. A greater protectiveness, beyond gender differences, belied verbal assurances that I was typical. My mother ran my Girl Scout troop to keep the other kids from teasing me. I was in my mid-teens before my parents trusted me to ride a bike, where my younger brother wheeled around at ten.

As I grew into my teens, I avoided the anger and jealousy I felt toward my brother by spending hours in my room reading. As he was three-and-a-half years younger, he constantly asked me to play with him, only to have me turn him away. But as I got used to his teasing, his wonderful sense of humor disarmed me. We hid our emotional intensity in endless arguments about politics and foreign policy.

During our conversation about growing up, my brother also adds, "When you grow up with somebody, you don't see anything different. That's the way they are -- that's my sister." As I come to terms with the physical and psychological meaning of my hearing loss, I read acceptance in those words.

In thanks to my brother for our experiences growing together, I'd like to tell parents, brothers, and sisters about the strengths my disability has given me and my family. Because a partial hearing loss forces me to fill gaps, I have developed an active sense of nonverbal cues from facial expression, mouth movement, and shifts in vocal intensity. My brother's teasing gave me plenty of practice here! I'm just beginning to trust the truth of clues.

I am developing a sense for subtle shifts in people's responses to me that tells me whether I have picked up on the underside of their speech or whether I am way off base. What this means in families is that children with hearing loss are very acute in discerning if the verbal cue does not match the underlying nonverbal feeling or behavior. And it's very easy, if a parent or sibling is uncomfortable with the accuracy of this discernment, to say that the child didn't hear correctly.

The "selective" hearing that my brother mentions is a trait all children have! I have known kids with keen hearing to go "deaf" when dishes are mentioned. Also, it's a function of the extra "sense" that I have had to develop. People usually lower their voices or use a different pitch to say censored, pleasurable, or emotionally-laden phrases. This signals to me that something important is coming, so I increase my concentration or alertness.

My family has allowed me to educate them on the challenges facing a sister with a hearing loss. Some of these challenges are as follows: It takes an enormous amount of energy and concentration for me to listen to conversations, especially in group situations. I am most comfortable one to one, or in groups of two to four people. Unless I can see the person's lips, it's impossible for me to hear conversations in the dark. I still have to tell my family not to dim the lights for those cozy living room discussions. I find it difficult to listen to anyone with a television on or music playing. All these things come up within families.

When I am emotionally upset, I find it much harder to hear. It's necessary to slow down, rephrase sentences, and give me time to process things. This is hard to do in a fight or when someone's crying. Also, I tend to interrupt a lot because it's difficult to distinguish a phrase from a full stop.

For all families: Use your differences and your gifts to imagine the fullest life each family member can live. There is a difference between being "disabled" and "having a disability." If I am "disabled," that defines who I am. If I "have" a disability, I have certain choices as to how this physical and psychological reality limits what I do and how I live. If other people recognize and respect that disability, we can work together to create ways to stretch those limits.