Today’s topic: siblings, with and without disabilities. Most of us have them, whether they’re full, half, adopted, or step. And really, in most cases, unless you’re in a very formal situation such as having to fill out government documents, those prefixes don’t matter and aren’t needed. Your sibling is often the first kid you spend a lot of time with, the first you fight with, and the first you play with. You may not seem close–for example, my little brother and I fought like crazy growing up. And we’re not huggy-kissy now, in part, I guess, becuase he’s a guy. But if anybody except me gave him a hard time, I’d be on them like a piranha on a ham sandwich. And I’m guessing a lot of you are nodding and smiling right now because you feel the same way. Although if not–if you and your sibs did or do have a bad relationship or none to speak of–I am truly sorry and sending hugs.
Here’s the thing about this post. Some of us grew up, not just with the siblings we could see. Some of us had an invisible family member–our sibling’s disability (or in some cases, more than one, or different disabilities spread out among more than one kid). We couldn’t see this family member, but we knew it was there. Its personality varies–some disabilities are quiet and unobtrusive except in certain situations. Some are constant, but can be satiated with a specific set of modifications, schedule changes, or whatever. Some are capricious; meeting their demands change from day to day, hour to hour, minute to minute. But no matter the personality, this invisible member affected our families in ways we couldn’t always anticipate and definitely didn’t always want.
Some of the people reading this–and the person writing this–were or are the sibling with the disability. And again, no matter its manifestation, we knew it. No matter its manifestation, the disability affected our sibling relationships. For example, I remember being about ten, my brother about six. He could tie shoes. I couldn’t. My mom suggested I get him to help me, probably because she thought that would create a bonding experience. The response she got, not in these words, was,
“Are. You. CRAZY????!!!”
When we were older, my brother and I commisserated over the presence of this invisible family member. I shared that I envied the freedom he had and that, at times, he didn’t seem grateful for. He had a driver’s license. Not me. He could ask to go to other cities with friends and, if they were good kids and promised to be careful, he was usually allowed to go. His body did what he wanted. But, he shared with me, he envied the attention he perceived I got from my parents. “If you fall over, Mom freaks,” he said. Of course, I pointed out that I didn’t ASK her to freak, but he had a point, as do many sibs in his shoes. No matter how great your parents are, no matter how they try to avoid it, a child with a disability will take attention away from children without one. I hated that for my brother. I hate it for other sibs without disabilities. But there it is.
Siblings without disabilities also face other issues. For example, Kathie Snow writes about “sib shops,” or places where these siblings go to talk about having a family member with a disability and the effects that incurs. These can be seminars, camps, whatever you like. And in theory, there’s nothing wrong with them. Were I in my brother’s shoes, I would want a chance to connect with kids who had experiences like mine. But what tends to happen is, the sibs get painted as victims just as much as the kids with disabilities do. As in, “It must be so hard for you,” “How bad is it”–that kind of attitude. Sometimes, the sib with a disability is painted as someone who takes from his or her brother or sister, making their lives miserable. And family life in general can be painted as tragic, sad, or perpetually stressful and frustrating–which it wouldn’t be if that kid with a disability weren’t around. The message given, however benevolently couched, becomes, “It would be better for you, and your family, if your brother or sister were not around.”
What is UP with that?
Now, I am not for one minute suggesting every sib shop, seminar, camp, and so on is like that. Some can be quite beneficial. And I am not suggesting these activities should never be done, or that disabilities don’t bring frustration or stress. They do, to everyone involved, including the person who has the disability. Actually, from experience, I can tell you I’ve felt guilty about that–lower than gum under a shoe, to be honest. But the thing the directors of these sib shops or family seminars or whatever sometimes forget is, the disability is the stressor, not the person. Disability does not, and never will, = person. If we continue to act like it does, families will continue to suffer.
The truth is, a lot of siblings have written or otherwise shared that they’ve learned valuable lessons from their sibs with disabilities. They have good relationships, and they feel like equals–because they are equals, and are treated as such. Even the sibling who has had to sacrifice parental time and attention, his or her own wants, or other things because of a severe disability such as profound physical or mental issues, can have a good relationship with that sibling. And therefore, the child with the disability strengthens, not weakens, the family.
But in some cases, that’s not true, and we need to work on improving that. I’ll give some examples, both real and fictional.
First, the real examples. I’m an avid reader of the Dear Prudence column. This week’s live chat includes a letter from the neighbor of a family with two children–a nine-month-old baby and a four-year-old with severe disabilities. The neighbor writes that the mother cares for the older child 24-7, literally. As in, the baby gets neglected. It’s allegedly to the point that the baby won’t cry because she knows she won’t be tended to, and that when the neighbor, who comes over at times to “take the baby out,” comes over, the baby acts heartbreakingly excited to be cuddled and paid attention to. The neighbor’s question: should I call the police to report neglect of the baby, even though the mother is obviously loving and dealing with a really tough situation?
Prudie’s answer: Basically, no–the real question at hand is, why hasn’t this family been encouraged to look into social services, respite care, facility care, and so on? You can check the full answer out at slate.com, as well as reader addendums.
Now, you guys ought to know how I feel about the answer to disability being, “Stick the kid in a facility.” And frankly, I’m not a big fan of the term “respite care” because of the connotation–that the individual with a disability is a siphoning, draining burden the other family members need “respite” from so they won’t have to deal with the constant care and demands of that person. But in cases like this, I have to agree with Prudence. Not about the facility option–no, never. Institutionalization is not my bag, and group homes should be carefully investigated. But respite care? Other people to help pitch in? This family needs it, because from what the neighbor says, the baby is being neglected, and someone must step in. If that turns out to eventually be law enforcement, that’s heartbreaking, and I hope and pray it will not come to that. But if it does, that may be what’s best for that family. Why? Because although the older sibling does need 24-7 care, the younger one–a baby who cannot speak for or care for herself–is facing real neglect. This isn’t about who Mommy appears to love more; this is about making sure each kid gets what each kid needs and deserves, without it being at each other’s expense.
Fictional example: Jodi Picoult. She’s one of the few secular authors I read, and because of her penchant for strong language, I only have two of her books. But the two I do own, Handle with Care and House Rules, deal directly with what it’s like when a child with a disability has a sibling without one. Her writing is real. It’s raw. And it’s a perfect example of what should NOT happen in this type of family.
In HWC, the character with a disability is five-year-old Willow O’Keefe, a scary smart little girl with Stage III osteogenesis imperfecta, or brittle bone disease. Literally, this girl can slip on a wet floor and break a bone. She broke bones being delivered because of birth stress. In the book, her parents are accused of child abuse on a family vacation because they forgot Willow’s doctor’s note explaining the situation to anyone who might see Willow’s breaks–or evidence thereof–and get suspicious. \
Amelia is Willow’s big sister. No disabilities. Also smart, pretty, spunky–a great kid. And she loves her little sis. But, but, but. She’s told not to ice skate on the pond outside her own house, because “It’s cruel to Willow.” On the family trip to Disney World, Amelia is not allowed to go on any fast or big rides, because Willow might break (it’s never considered that she could go with Mom or Dad, while the other parent watches with Willow and waves). Her need for attention gets so bad, in fact, that she contracts bulimia in response to her own guilt for feeling resentful toward Willow and guilty about what she doesn’t do for Willow (for example, Amelia blames herself for the child abuse fiasco because she was supposed to bring the doctors’ papers to the van).
Now, am I suggesting Willow should always be sidelined because of what Amelia needs or wants? No. Should Willow have to put herself in danger for Amelia’s sake? No. But neither should Amelia be denied natural experiences just because her sister has a disability. (And really, nothing in the book indicates modifications were explored, which creates another problem). And certainly, Amelia should never have spiraled into the pit of an eating disorder because of her family environment.
Second example: House Rules. Character with a disability–Jacob Hunt, age 18. He has Asperger’s Syndrome and is a forensics genius, but he can’t stand it if you move his clothes out of ROYGBIV order. He has a meltdown when the Free Sample Lady doesn’t show at the Food Co-Op at her regular time because of bunion surgery. (In his defense, she was going to hand out desserts that day). He doesn’t have any friends. But, like Willow, he’s still a great kid.
Sibling: Theo. No disabilities. Age 15. Has the unique experience of being a skater and an honors kid, apparently uncommon in his school. Also a basically great kid, but increasingly frustrated with Jacob. No, make that just plain mad. Why? Because he’s expected to “understand” when, say, Jacob’s meltdowns prevent him from going to the DMV to get a driver’s license, three times. He’s expected to “understand” when an outburst gets him physically injured. And, as he says, he’s not allowed to say–not even allowed to think–that life would be easier without Jacob, even though he does love him.
Do you see the problem? Yes, siblings need to “understand” about disabilities. And sometimes, yes, the disability needs to come first. But in my humble opinion, not to that extent. And in my humble opinion, no kid should have to be like Theo and stuff down his feelings about his situation indefinitely. (Because of this, Theo becomes a kleptomaniac who also sneaks into other people’s houses just to hang around).
Yes, having a sibling with a disability is hard. Raising kids with and without disabilities at the same time is hard. Sometimes, it can be heartbreaking and, as I said, make us just plain mad. And that’s okay. But as I hope to have outlined, there are ways to deal with it–and not deal with it. Namely, one child should never be placed on a pedestal at the other child’s expense. Now, does that mean the sibling without a disability can haul off and say, “I wish you’d aborted that kid?” or hurt the sibling in some other way? No. But nor does it mean the sibling gets what they want, whenever and wherever they want. If that happens, the disability–NOT the kid, but the disability–will tear the family up. Which will, whether you can see it or not, make the kid with the disability feel terrible, not to mention what it does to everybody else.
In working with children who have disabilities, we’ve begun to say that we need to be attuned to the needs and wants of ALL children, no matter how severe the disability seems. And that’s absolutely true. But in every case, even in families–no, especially in families–all children does mean ALL.