Elizabeth Schiltz is a law professor and mother of four. While pregnant with her third child, she learned he had Down syndrome.
From Living City October 2009
What was it like to receive the news that your child had Down syndrome?
My husband and I are Catholic and have always been pro-life. Having counseled pregnant women in crisis through the Birthright program, there was no question in my mind that we would welcome any child we had.
My brother is mentally retarded, so the general idea of having a child with a disability did not frighten me. But when we got the diagnosis, it was earth shattering. For weeks I did not want to touch my belly, because the baby inside me had become a stranger to me. The day we got the final test results I left work in tears, went into a bookstore and bought every book I could find on Down syndrome.
I was really glad I was able to go through that trauma before Peter arrived, because when he was born he was less of a stranger to me. He was still a mystery, but we were all set up with doctors and therapists and had been able to arrange a more manageable work schedule.
It was not easy, but it was not as traumatic as it might have been.
How has Peter’s presence had an impact on the other siblings in your family?
There is no question that Peter has had a positive influence. The two older children are aware of how much they receive from Peter. They are more intellectual, and it has been healthy for them to have someone in their lives they love passionately and who is not performing in the same way that they are. I think that gives them a broader sense of what people are about.
My youngest daughter gets frustrated by the attention he gets and by his limitations. But she adores him and often talks about how lucky our family is to have someone so special in our lives.
Also, because I just need more help with him, they are used to pitching in, and this has given them a marvelous sense of confidence.
How has it made a difference in their interactions with other people?
At times we have felt that it is us against the world, at least in how we see Peter. For us he is a sweet loving person, but then you take him to the mall, and you see people looking and you know they are not seeing the same reality. This has drawn us closer as a family, and has given the children a tendency to fight for the underdog.
When my older son was in elementary school, he was bullied, and his response was to try to make the school a better place with a project he called “Dollars for Down’s.” He raised $300 and gave it to the school’s special-education teacher. Reacting to playground fights, he once told me, “I go with whoever needs me most.” Having this somewhat odd person in our family, someone who reacts differently, has helped the children see that they do not necessarily need to go with the flow.
How has your life with Peter informed your work as a scholar and a teacher?
One of my areas of specialization is banking law and banking regulations. I have always been curious about the connections between disability laws and the Equal Credit Opportunity Act, which forbids discrimination on the basis of race, gender, class and so on, but not disability.
Following the civil rights model, the disability rights community has made important strides against the infantilization of people with disabilities. But most of this work is done by people who are not disabled themselves or by people who are physically disabled but mentally very sharp. It tends to emphasize the importance of autonomy and letting people speak for and advocate for themselves. This has led us to see disability as essentially a social construct, in which the suffering comes from how society treats a person with a disability, not from the disability itself.
My son benefits tremendously from these changes in the laws and social attitudes. But I think it is time to recognize that it is not the whole picture.
What do you see in the rest of the picture?
My son has Down syndrome and autism; he is not really verbal, and he is not going to be able to function in the world beyond the level of a six or seven year old. He is an example of the fact that there are painful physically and mentally disabling conditions that preclude people from exercising their autonomy in a meaningful way.
It is not just a question of how society is reacting. I would never allow a six or seven year old to make all of the decisions that adults are called upon to make.
So what does Peter’s dignity demand of us when he is always going to be dependent? On a deeper level, this dramatic example of my son has brought me to reflect on the ways in which we all are always ultimately dependent on each other.
This raises a lot of questions about a legal system that gives so much emphasis to the idea of individual autonomy. My scholarship is a place where I try to work out some of those questions.
What would be your hope for helping others discover what you see in people like Peter?
I think what would make a difference would be for all to recognize that what we see in a dramatic way on Peter’s face is something that we all carry, to some degree, within ourselves. We all carry imperfections and deficiencies, so we need not be afraid of the strangeness.
Our country continues to show how we are open to different races and colors as more beautiful manifestations of what it means to be human beings. My hope is that we might internalize the fact that disabilities are manifested in the same way, and so move toward honestly feeling comfortable enough to welcome people with disabilities into our hearts and into our lives.