Brett Chun Berkeley, CA

Reprinted with the permissions of the author, and of: James May, The Father's Network 16120 NE 8th Street Bellevue, WA 98008-3937 (425) 747-4004 ext. 218

The second subject was motivated by many incidents that I have experienced in my interactions with and observations of people and how they relate to disability and difference. For instance, I recently observed a young mother trying to teach her son, who was a toddler, how to press an elevator button. In her frustration with his difficulty in mastering the skill, she impatiently blurted out that he must be "retarded," trying to motivate him to learn by expressing this demeaning remark to him. It was a saddening reminder that my child was "marked" in some stigmatized way.

To observe the transmission of this parent's attitudes to her child and to witness its passing from one generation to the next stirs a father's worst fears that the world can not be trusted to deal as fairly and sensitively with his child as he does, and that there is less hope for change. These common experiences and far worse, are what parents encounter (i.e., the social stigma of disability, societal attitudes of fear, intolerance and prejudice towards individuals with differences and their families) as they strive to help their children gain recognition and acceptance beyond the boundaries of the disability community. As a panel member at the conference I was asked the following question:

Dr. Thomas Powell: What do you want for your disabled child and what are your fears?

"There is a history to the question of what it is that I want for my child. During the diagnostic process, which took months because Amy's diagnosis (of Down Syndrome) occurred during pregnancy, no professional had ever asked me what my understanding of my child was, and that was really an amazing thing to me because in fact, I knew a lot about my child before she was born."

"And as I began to participate in the parenting experience by attending meetings and being part of interviews, being involved with my child, I came to feel like an invisible family member. Most of the attention was on my wife. Even when I asked questions about my child, about life experiences of having a child with special needs, there were people who would turn to my wife and talk to her and ignore me. That is not an uncommon occurrence, I think, in the health care community. I don't mean that as a criticism but an observation on my part."

"I realized that my presence in these meetings confronted peoples' assumptive worlds about me and I had to struggle with finding a way to establish a presence with them, to make myself a visible member of my family. That was not an easy thing to do during this time of turmoil and uncertainty. I think that if I were a different kind of a father I would've withdrawn from that situation, gone into myself and cut myself off not only from a very important aspect of my identity as a father but an equally important part of the fragile relationship that was forming with my child."

"So here I am today. I have an ocean of professionals to talk to about who Amy is and it is a wonderful thing, and it is the first time ever that I will have told a professional person what I have come to feel and know and understand her to be. I want to tell you how she ornaments my life—she is an incredibly remarkable individual."

"To my eye, she is uniquely and unusually beautiful. She has dark, brown, delicate, silky hair that is very soft to the touch. She has a smile and a laughter that warms my heart and the hearts of others who get to know her. She has the extraordinary capacity for forgiveness. She never holds resentments or anger towards me and in my moments of frustration as a parent, she helps remind me of where I need to be in order to be a good parent, or at least, a good enough parent."

"Recently, it was pointed out to me that Amy does not distinguish between peoples' skin color or race. She doesn't see differences in people and at the age of nine, she is where I would like to be at the age of forty-five, and I am not there yet. She sees people not in terms of difference but in terms of friendship, love and affection, and she can establish that very quickly with people who care to get to know her. If you befriend her you are a friend for life."

"There is no child more capable of trust in the world. She is a bit of a management problem at school. People are constantly concerned that she will wander away—she does not fear danger. But, I like to think of her as being immensely trustful and vulnerable in the world and I think that is a real strength and tremendous offering to us. Her love, compassion and kindness is unremitting towards people, but especially towards animals. And when I watch her interact with animals, I am reminded of my potential for compassion and kindness, and I follow her lead in that regard."

"And lastly, what Amy has taught me is that everybody in my family needs to feel unique and special. And everybody in my community of friends and professionals, the people that I work with, also need to feel embraced by a sense of community and support. And that's who Amy is, and that's what I want you to know about her because my fear is, people will only see her disability, and there is much more to her than that."

In sharing my experiences, it is my hope to reach out to professionals who work with children and their parents and to broaden their awareness to include fathers when they formulate early intervention services to families. Fathers represent a potentially valuable and frequently untapped resource within the family. They bring their own style of nurturing to the parent/child relationship; one that adds diversity and richness to the child's emotional, social, and physical development. Failing to include fathers in family oriented services risks limiting their participation and relegating them to a role secondary in importance in the lives of their children.

Often fathers wrestle with grief, isolation, fear and loneliness in their private worlds. Our patient efforts and commitment to succeed in finding ways to foster positive working relationships with them will help prevent many Fathers emotional withdrawal from the family. Fathers will thus be able to take on their portion of the care and responsibility for the disabled child which would otherwise fall upon other family members. The entire family will benefit. Most importantly, fathers will be able to share in the rewards of their special relationship with their children.

What makes a father's relationship with his disabled child special? There are many facets, here are some examples: In the many years that Amy has spent in full inclusion settings alongside other children (without disabilities), learning, growing and playing together, the number of lasting peer friendships she has formed has been astonishingly few—it seems that the older the disabled child grows, the more distant he becomes from the mainstream. Despite our family's efforts to stave this off, Amy's gradual isolation from typical children is a telling reminder of the attitudinal barriers (most often silent and unseen) which prevent her from being a part of life; a deeply disappointing and common experience for parents and their special needs children.

To make the best of a situation, some parents hope that the rest of the world will someday "catch up" in their understanding of disability and difference and accept their children. I have tried to communicate something about what it is that I have come to understand about Amy; the learning, the meaning and value that she holds for me and which has served to form a powerful bond of devotion to her.

I communicate this understanding because it is my hope that I might inspire others to see that although Amy has needs which require our time, attention and resources, (to some this constitutes a burden), she too gives to us, and she does this freely, generously and without expectation. Her "gift" of humanity, her gentle spirit and enthusiasm for living offers a community the chance to see beyond the "outer wrapper" of disability to the person within. She and children like her provide us opportunities to realize that there are dimensions to the human experience that transcend our beliefs about gender, race, intelligence or physical perfection. My hope is that we can achieve this for ourselves and for our children—it makes for a healthier and enlightened community. My fear is that we may not.