Excerpted from Special Siblings: Growing Up with Someone with a Disability, Revised Edition, by Mary McHugh.

Copyright © 2002 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

The conviction that I wanted to write a book for other siblings started when I wrote about my relationship to Jack for The New York Times Magazine. I received so many letters that I realized a lot of siblings out there feel exactly the way I do and have never had a chance to talk about their experiences growing up with a brother or a sister with a disability. One woman wrote me that she felt she had lived my life. “All my life,” she said, “I suffered silently with the same kind of shame and embarrassment that you experienced. I also felt terribly guilty about having those same feelings.” After a fuller version of my story appeared in Good Housekeeping, a mother wrote, “I am giving copies of your article to my three children who have coped and will cope with the same situation concerning their youngest sister.”

I realized that there was a need for a book on this subject. I decided to write about my own story of growing up with Jack; research on the siblings of the 43 million people in this country who have mental retardation, mental illness, or a physical disability; and, most important, the experiences of other siblings like me. I found these siblings by word of mouth and through letters they wrote to me. I found them on the Internet and at parties, through friends, everywhere. I talked to men and women in all parts of the country, ranging in age from 6 to 76. They were all eager to help me with my book, and I thank them for their honesty and generosity. They don’t all feel as I do. Many grew up in homes that fostered compassion — without the resentment that I feel. Somehow they talk about their siblings with love, as if they were blessed to have such a child born into their family. They think it was the best thing that could have happened to them because it made them into strong, loving, empathetic people.

I envy them. I wish I could consider my brother’s existence in our family a blessing. But I miss the brother I could have had. We would be close now. Our children would play together. We would reminisce about our parents and our childhood. We would help each other in times of trouble, laugh at our early quarrels and fights, understand each other in a way nobody else could. Perhaps it was hard because it was only my brother and me. There were no other siblings for me to play with, to get into trouble with, to help me defend Jack. People who have siblings in addition to the one with a disability often come out of their childhood with less resentment and anger, with more love and compassion.

This book is for all of us — the siblings who want to love their brothers and sisters with a disability and feel guilty when they cannot, the fortunate siblings whose parents helped them to love their siblings with disabilities.

When I talked to other siblings — more than a hundred of them — I discovered that we have a lot in common. Most of us are inventive problem solvers, compassionate, tolerant, responsible, and high achievers. We also carry around a heavy load of guilt because of the anger, frustration, and resentment that we still feel. Growing up with siblings who needed so much time and care meant that we lost out on much of the love and attention we craved as children. We weren’t allowed to grieve for our siblings who were born with a disability. The brothers and sisters who can’t hear us or see us or play games with us. The siblings whose minds are slow, whose bodies are broken, whose spirits are crushed. We were told, “Think how lucky you are that you can go to school, have playmates, do whatever you want. You can see (or hear or think or walk). Your sibling can’t.”

We could never complain. We could never cause any trouble — at least not until we left home. We had to be good. Our parents had enough problems. Think how monstrous it would be to add to their constant worry, to their infinite sorrow because they had a child who was not “perfect.”

As I talked to the people who contributed so much to this book (whose names and identifying characteristics have been changed), they expressed a great sense of relief that they could talk about all of these feelings. More than anything else, I want this book to give other siblings the reassurance that their feelings are normal and, to some extent, universal.

When I was a child I thought that growing up with a brother with cerebral palsy and mental retardation was just a fact of life. A fact of life that I didn’t like very much. I wanted a brother who could play Monopoly with me, climb trees with me, talk to me. I wanted my mother to pay more attention to me and less attention to him. I wanted a “normal” brother.

When I was an adolescent lost in a new city and far from my friends who had accepted Jack, I was ashamed of my brother, embarrassed by him. I didn’t want to bring people home. I didn’t want my boyfriends to see him. I thought that everyone would think there was something wrong with me, too.

When I was an adult, I wasn’t sure whether I should marry. I would have to take care of my brother some day, and I wasn’t sure if it was fair to burden my future husband with this. Fortunately, I met a man who was determined to share all aspects of my life.

After my children were born, I saw my brother when we went to visit my parents. My daughters seemed to accept him the way children do. He was just Jack, and they chattered away at him, kissed him, hugged him. He would smile when they came to visit.

My brother could read a little, dress himself, answer questions, and indicate his preferences. But he couldn’t live alone or earn a living. He stayed with my parents until he was 37 and then went to live in a home for adults with mental retardation. My parents wanted him to be happy and settled by the time that they died. I didn’t think about Jack often, and I didn’t feel much love for him. It never occurred to me that having a brother with a disability had shaped my whole life. But, of course, it had an enormous influence on me.

Once I had children of my own, I understood my mother’s dilemma. She ached for me. She practically killed herself trying to give me enough of her time, attention, love, and care. But mothers are human. There were times when I had to spend more time with a sick child than a healthy one. And my mother had to spend more time with my brother than with me.

I yearned for her love as a child. She praised every sound, every physical move, every tiny step forward my brother made. I wanted her to praise me, too. I wanted her to lavish extravagant praise on me for my “A” report cards, for my stories that were published in the school newspaper, for the puppet shows that I wrote and directed, for my talent as a writer. I tried harder and harder to please her. The one time that she said something fairly encouraging to me, I treasured her words and remember them to this day. When I was 7, I wrote a story about Sally Skunk, pasted it on construction paper, put clips through the sides, and showed it to my mother. “Look Mommy, I wrote a book.” My mother almost smiled. “If you keep that up,” she said, “you’ll have a real book published some day.”

The memory of those words, of her almost-praise, stayed engraved in my mind, and I finally had a book published at age 43. I wrote five more after that, but she and my father never read any of them. They said, “Oh, that’s nice dear,” and put them aside. When my brother bowled with the team at his new home, my mother sent me a picture of Jack with a bowling ball. She said, “Isn’t that wonderful!” I barely answered her.

When I wrote articles for national magazines, got a job as an editor at a magazine, stayed thin, married a good man, and learned how to develop my own photographs, she said, “That’s nice dear.” Then, she told me that Jack was singing in the church choir. “Great,” I said.

When I was in my forties, I went to a therapist. I only mentioned my brother in passing. “My brother is retarded,” I said and rapidly moved on to my husband and my daughter. It never occurred to me that my whole life had been shaped by having a sibling with mental retardation. “I have no feelings for my brother,” I said to the therapist. “Oh, Mary,” she said, “you have very strong feelings.”

Even then, I had no interest in exploring those feelings. I didn’t want to think about him. Didn’t want to accept his influence on my life. How could he affect me? I had ignored him for most of my life.

My mother felt guilty about asking me to help, about crying in front of me, about admitting that it might be a slight strain caring daily for a full-grown, helpless, anxious man who had mental retardation. She never said, “I can’t do this all alone. Please help me.” She never complained. Should she have? Probably.

I understand my mother much better now because one of my own daughters was blind, had a leg amputated because of the complications of diabetes, and died 3 years ago. As much as I wanted more of my parents’ attention, resented the fact that our family was “different,” and was embarrassed by my brother’s disability, I know now how hard parents try to be fair to their other children. Sometimes you feel shattered into a dozen fragments. But although I am a parent of a child with a disability, I am writing this book as the sister of someone with a disability.

What is it like to be the sibling of someone with a disability? Very little has been written about it. The study most often quoted was written in 1972 by psychology professor Frances Grossman, who concluded that half the people growing up with a sibling with a disability benefited from the experience and half were harmed by it. I’m happy to say that research done since the early 1990s leans more toward the positive side of the ledger, largely because people know more about those with disabilities.

In this book, I have included the positive steps taken to change things for the families of children with a disability. The experts I talked to are working with siblings in support groups, on the Internet, and in seminars to help them understand and cope with their strong feelings. Donald J. Meyer, Director of the Sibling Support Project of The Arc of the United States, has been particularly active in this field. He has created nationwide sibling support groups (SibShops), and his Internet forum, SibNet, is a no-holds-barred place for siblings to vent their feelings about their brothers and sisters to others who understand exactly what they mean.

All of the experts and siblings I talked to emphasized one important point: When you are talking about those with disabilities, be sure and put the person first and the disability second. You talk about a person who is blind, never “the blind.” You say “a person with a disability,” not “the disabled.” In other words, don’t make the disability the most important thing. Emphasize the person. Other people often have to be gently reminded of this.

In the article “Children with Disabilities: Understanding Sibling Issues,” a young woman with a hearing impairment explained it this way:

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.

While doing research, I found that despite sibling support groups and community and educational inclusion of people with disabilities, siblings still don’t have many opportunities to talk to others about their experiences. It’s one of those things nobody really understands unless he or she has been through it, too. When I meet people like me, they say, “This is the first time I’ve ever talked to anybody else about this.” This book fills that void.

As I talked to other siblings, spoke with experts in this field, and read research on the topic, I realized that each part of our lives has its own problems. We require different information and help according to our age. Because of this, I have divided the book into three parts: Childhood, Adolescence, and Adulthood.

Part One, “Childhood,” illustrates that children mainly need someone to listen to them, someone who will talk to them in words they can understand, someone who will welcome any questions, no matter how difficult the subject. A sibling support group can also be very helpful, allowing them to play with other children in the same situation and to talk about their fears, anger, and frustration. Part One also explores how siblings are affected by their parents’ relationship, their place in the birth order, their gender, and the size of their family.

Part Two, “Adulthood,” discusses the ways in which adolescents are sensitive to the reactions of their peers and offers help in dealing with rude or insensitive remarks from friends or strangers. During the teen years, everyone wants to fit in, to be like the others. It is a time to establish one’s identity. Having a sibling with a disability makes a teenager “different,” and a therapist, an understanding parent or grandparent, or a support group can help him or her cope.

Part Three, “Adulthood,” encompasses everything from marriage and children to responsibility for a sibling with a disability when parents are no longer able to do so. During adulthood, siblings need much more complicated information: how to make room in their lives for their brother or sister with the disability when they have a family of their own; how to help their own children understand why their aunt or uncle is different from other adults; how to find a suitable living arrangement for a brother or sister; how to provide for that sibling if something should happen to them. Part Three addresses the emotional issues. The appendix of resources at the end of the book offers help with the more practical problems.

The information in Special Siblings: Growing Up with Someone with a Disability is from a variety of sources: research studies on sibling relationships in families where there is a child with a disability, books written by leading psychologists and educators, interviews with these experts, interviews with siblings whose brothers or sisters have a disability, and visits to sibling support groups.

Most of the books that have already been written on this topic are aimed at other professionals to summarize the research that has been done, to help therapists counsel the siblings, or to set up support groups. This book is for all of you siblings out there who want to hear my story and the stories of others like us. How have we coped with our ambivalent feelings, our anger and guilt? How has it affected our lives as adults? Are we more at risk for psychiatric difficulties than those who don’t grow up with someone with a disability? Are the research studies reassuring or pessimistic about our chances for happiness.

I have called this book Special Siblings to refer to those siblings who do not have a disability as well as the ones who do. Our brothers and sisters with disabilities are often called “special” — even their Olympics are “special” — but it’s important to point out that we are all special. I hope that this book shows the rest of the world the qualities that make us that way.

I don’t think I’m a bad person. I know that I’m more sensitive, loving, and caring than I would have been if I hadn’t had such a troublesome childhood. But if I come back again, I hope I don’t have a brother like Jack. I hope my parents love each other. I hope I have brothers and sisters who are “normal.”