Carol Hamilton, UUCSS member and former Board of Trustees Corporate VP, discusses her experience as the sibling of a person with disabilities.
“Am I my brother’s keeper?” The simple answer to this question is yes, I am. A few months ago, the court named my younger sister and I my brother’s guardian. We took over this responsibility from my father who could no longer handle the duties since he is almost 93, frail and in a nursing home.
My brother, Graham, got sick when my parents were stationed in Indonesia when he was 8 months old. They don’t really know whether it was encephalitis or meningitis. Because of his illness he is profoundly deaf, developmentally disabled, and autistic. He is almost 5 years older than me so, for me, he has always been this way.
If you had asked me 10 years ago, what impact having a disabled older brother had on me, I would not have known how to answer. In fact, while folks often asked me variations of this question, I found the question a bit strange. My answer was — it’s always been this way, so I don’t know anything else. I was able to acknowledge all the positive things it brought me. An appreciation of difference as well as how the world treats difference. An urge to stick up for the marginalized that has driven my career choices. The ability to engage with an autistic person even if they might look away.
And that is what the world wants to hear. “the only feedback I ever got from the world in general while growing up was through sappy after school TV specials where the sib waxes lyrical about how her disabled sib ‘taught her the true meaning of love or courage’ or whatever cliché you want to add in here,” says a sibling interviewed for “Being the Other One: Growing Up with a Brother or Sister with Special Needs” by Kate Strohm. And for me in part, the clichés are true. And it is not the whole truth.
I have to admit I’ve never liked the song, “He Ain’t Heavy, He’s My Brother.” The truth is for me that he is heavy. Like a black hole, he sucked up all the energy of my parents, especially my mom. Since I was little I was a tag along. We went to play ground because Graham needed to run around. We lived where we did, because when they moved back to the states, my mom drew a circle around DC’s Children’s Hospital and those were the neighborhoods where they looked for a house. When I was little, before I can remember, my brother apparently did not sleep and my parents took shifts staying up all night with him day after day.
Even when your sibling has “special needs” what I have had to acknowledge – is that I also had and have needs. Yet for most of my life, my worldview was completely informed by the fact that there was just not enough space for me to have needs. As a baby apparently, I rocked myself to sleep so vigorously I would move the crib across the room. I assumed I had to figure it out all on my own and it is not ok to ask for help. And I was most comfortable fading into the background, taking “back of the room” roles rather than doing anything that drew attention to myself.
In “Being the Other One,” Kate Strohm describes this as a common experience and coping mechanism for siblings of children with special needs. Often the typical siblings will feel the pressure to not cause any trouble – they have to be the good one – because their parents already have too much to handle, or the need to be perfect or accomplish all the things their sibling will not be able to accomplish. And often typical siblings get a lot of positive feedback for being “good” – for helping, taking on care-taking responsibilities at an early age, for achieving what their disabled sibling can’t.
My brother is non-verbal. It wasn’t until he was in his teens that they ascertained for sure that he was deaf. Since my brother is non-verbal, people ask how we communicate with him. He does know a few basic signs now and works with a sign language teacher to learn more. Again, it was not a question I had a good answer to. “We just do, I would think.” What I have realized is that having spent a lifetime interpreting body language and facial expressions of a not very expressive person, I am hyper sensitive to body language. The unfortunate side effect of “mind reading” my brother all my life is that I can fall into the trap of believing I could mind read everyone else as well. Everyone does this to some degree – yet I was suffering from a particularly acute case – and still have to remind myself of this.
When Graham was little, he was a very cute kid. He looked totally normal. Until he would start running down the street flapping his arms making a loud buzzing sound. I am part of a Facebook group for Siblings, and I remember one long discussion about whether it was harder to have a sibling with a disability that was visible or invisible out in public. The gap between what Graham looked like and how he acted constantly took people by surprise. And made for lots of family lore. Like the time, 8 year old Graham ran across the restaurant into the hotel bar and downed a very stuffy Englishman’s whisky. Or the time Graham peed into the fountain at the Alhambra — luckily when the tour guide was having everyone look up and admire the mosaic ceiling. Or when he drank out of the holy water at Durham Cathedral. Or when he would get to the end of the diving board with a line of kids behind him and then pace up and down the board, not jumping in, frustrating all the kids in line.
Or the scarier stories. Like the time he climbed out on the slate roof in a rainstorm. Or when I woke up in the middle of the night to discover that he was taking our bunk bed apart with me in it. I got out just before it collapsed. Or when we were at some cliffs in Ireland long before there were any safety features and he saw a scrap of paper he had to go pick up and so walked out to the very edge and scared us all to death since if he had slipped for sure he would have fallen and died.
Someone always had to be with him. There was very little predictability. Would he run off? Would he decide that he was tired of being in the car and open the back door while my mom was speeding down the highway – which he did several times before the invention of safety locks on car doors. Or when he decided to go to the bathroom just as a plane was landing. The flight attendants kept yelling at us to get him out of there as we tried in vain to explain that that was unlikely to happen.
When I first took the StrengthsFinder test, one of my top five signature strengths was responsibility. I was proud of my ability and inclination to jump in, take charge, and take responsibility for making things happen. Certainly I learned this from the start, as I was always the more responsible party when it was me and my brother – even as a toddler. Like any strength, something overused has a shadow side. In graduate school just a few years ago, we were in a class considering sources of personal power for consultants. Each source had both an up side and a downside. When I saw the downside of responsibility was ‘martyr’ it stopped me in my tracks. The notion of “over-functioning” was not something I was familiar with but the description struck a cord.
I now try to not have this be my default but old habits die hard even once you have some awareness. When my mom died, I was doubtful of my Dad’s ability to manage on his own day to day. Our renter had just vacated the apartment that is on the side of our house. Without a thought, I said – Dad should move in with me. Three weeks after my mother’s death he did. Me agreeing to do this sermon just a week after I ended my board term of three years is probably another example of this ingrained habit.
While I was working on this sermon, I posted a question in the siblings Facebook group. I asked what they wanted other people to know about their experience. Some described their loneliness and isolation – especially those whose only sibling has a disability – they have no other siblings to share regular brother or sister bond with. And many know that they will be taking over their siblings’ care from their parents. I once facilitated a session at a siblings’ conference for young adults and I was struck by the number of people who described taking their sibling into consideration for every major life decision. Whether to move away from home – where to go to college, whether to get married and have kids. Many feared having disabled children themselves.
In the Facebook thread, some were very bitter and angry. Others described the positive elements, how proud of their sibling they were and how it increased their compassion and inspired them to enter caring professions. Other described survivors guilt, wondering, “Why was I spared?” Or how they felt they were not entitled to any negative feelings because their sibling had it worse. Or trying to be a perfect child that made no waves and caused no trouble because their parents were already overwhelmed. They described ‘ambiguous losses’ as they progress through many of life’s milestones – school, graduations, weddings, childbirth – knowing their sibling will not. And others described how being with their siblings makes them grateful for all the things we so typically take for granted – breathing, walking, talking, hearing. And indeed every common experience that is described in the book ‘being the other one’ was named. It was all there.
I was lucky that my parents were very direct about my brother’s situation. They modeled including him in everything we did when he was home. He wasn’t hidden away in the way that was common just a generation before. And being UU they weren’t layering on guilt about this being either a special blessing from God or a punishment for some unknown sin that others describe.
I am also lucky that my parents knew how to work the system and get my brother the services he needed. Once he aged out of the school system at 21, they were able to lobby to get him a placement at a group home with a good service provider. He has been with the service provider ever since. In fact he has been with one of his roommates for over 25 years. So unlike many siblings, Graham does not live with me and I am not responsible for his day-to-day care.
As I was peeling this onion over the past few years, one particularly memorable moment came watching an Australian movie called the Black Balloon. It is about a teenager with an autistic brother. It is real – it is not a sappy after school special. I cried through the entire movie. The scenes of chaos when his brother flipped out about something or other were just too familiar. While he was very resentful of his brother, I wasn’t able to acknowledge any similar feelings until my adulthood. They started to bubble up when I realized that the only time my mother called me was when she needed my help with having my brother over from his group home for a walk.
Unfortunately I didn’t screw up the courage to talk to my mother about any of this before she died. I was starting to plan for a conversation but was looking for the “right time.” But then she died suddenly a few years ago. So perhaps that is why I am talking to you all today.
In the years since my mother died, I have been able to let go of the resentment and anger. One weekend when I was having him over, it hit me that in fact, obviously, Graham could not help having gotten sick as a baby. It was not his fault that my mom always put him first. I realized that when we have him over for the weekend, it simplifies life down to its basics. And this is something to appreciate and be grateful for.
There is nothing to plan. We do the same thing every time – I fix him lunch, we go to the pool, we swim for a while, including doing his favorite thing – flipping in the water. I am sure it is quite a sight to see a 55 year old man being flipped feet over head for a half hour at a time. I am mostly over the embarrassment – though he still pushes my limits sometimes when he fully submerges himself in the hot tub for what seems like minutes. In fact the photo on the front of the order of service is from a recent weekend when Graham was over and we added a special treat after the pool – a trip to an ice cream parlor.
After the pool we come home. I make him help me with dinner even though he would really prefer I didn’t. He liked it much better when he was just served dinner by my mother. He does puzzles until he gets tired of them and gives me the “chop chop” or “I have had” enough sign. He lies on the couch and looks at photo albums. Then he goes to bed early. In between he paces from one end of the house to another. There is a rhythm and simplicity to this routine that is a lovely antidote to our overly productive to do list driven world.
The center point of each of those visits is our trip to the pool. Our love of the water and swimming is something we have in common. We love the pool and the hot tub and the ocean and the lake. When we go to the beach, he can stay in the water all day, rolling in the waves. I am at my happiest when I catch the wave perfectly, diving in and up it so that it catches me just right and lays me down on the water. DC summers are bearable because I can go swim laps outside every morning. I am quite convinced that Graham would be happiest if he could just swim every day. I know I would be too.
Luckily for younger siblings today there are a lot more resources available. Counselors and organizations that serve families are more aware of the issues. There are workshops designed specifically for siblings for them to be able to talk about what is going on with them and what they are feeling in a safe environment. Parents are told about the importance of spending one on one time with their typical children. They are warned to be careful not to expect their typical children to co-parent their disabled sibling.
Adult siblings are making their voices heard in ways that did not happen in the past – pushing agencies to acknowledge that they actually will have the longest relationship with the person with a disability – and about 50% will end up in a long-term caretaking role after their parents die or are no longer capable of the care-taking.
So when you see a family with a child who has a disability – don’t just have empathy for that child, the parents. Also notice the quiet sibling who might be acting just a little too perfectly – or may be in the middle taking care of their sibling in a way that requires too much of them – yet they are doing it anyway. Notice that child and remember their needs are special too.