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Volume 3 , Issue 1 Date: Spring, 2003 Topic: Expectations Through Life's Passages

An Interview with Martha Beck

by Nancy Borg and Jill Perry, LEND Fellows

Martha Beck is the author of Expecting Adam (Berkeley), a captivating story about her personal experiences as the mother of a child with Down syndrome. She and her husband are the parents of three children and Adam is their middle child. Martha earned a B.A., M.A., and Ph.D. in sociology from Harvard. She founded Life Designs, Inc.; a life-coaching firm to help people further develop their careers and lifestyles. She presents lectures and seminars nationwide on life skills. Her most recent book is Finding Your Own North Star (Three Rivers). Martha, very graciously agreed to be interviewed for this journal. The following transcript is an edited version of the conversation held with her on 4/10/03.
Jill: What were some of your expectations when you were told that your child would be born with Downís syndrome?

Martha: I was told that my life would totally revolve around the care of this disabled child. They were saying he would be an albatross around my neck, that my career wonít ever happen and that my entire life is going to be swallowed up by his disability.

Jill: Did you consider terminating the pregnancy?

Martha: I never did. He was diagnosed when I was almost six months along. It was not a political decision. It was based on what I wanted. I didnít want to lose the baby. I just really wanted him. I was very sad about the diagnosis but the thought of terminating the pregnancy was actually sadder.

Jill: You seem so strong in your convictions about continuing with the pregnancy. Where did you find those answers or where did your convictions come from?

Martha: Oh probably my outlook on life. I had already figured out that to me the meaning of life was to be able to experience joy and to be loved unconditionally and there was nothing about the disability that meant that my child couldnít experience joy and love. If my love for him had been conditional, then that would have meant that all love is conditional and thereís no such thing as unconditional love. I felt that if I terminate this pregnancy, I am pulling the rug out from under my own feet. Iím saying that if I get damaged then Iím not worth anything either. It was against my philosophy of the meaning of life.

Nancy: In terms of medical care, is there any advice that you would offer to medical personnel when presenting to a couple that their child might be born with a disability?

Martha: The nurse practitioner who gave prenatal care was the most supportive. I remember asking her if she could find which doctor was most sympathetic to continuing the pregnancy, and she said, ďI canít find you one. Theyíre all so closed to it.Ē I really felt completely alone. The best thing that they could have done was to hook me up with another parent. These doctors were telling me, ďItís going to be horrible. Itís going to ruin your life. Itís going to ruin your daughterís life. Itís going to ruin your marriage.Ē In point of fact, they had no evidence. They had no experience of this disorder at all. So basically, they were communicating their fears to me and they were doing it with the best of intentions. They really thought I was making a horrible, horrible mistake but they didnít know what they were talking about. The thing that bothered me the most was that they dressed up that fear as medical opinion. It was their personal fear of mental retardation and disability. Itís fine if they want to say, ďWell, personally, I hate retarded people,Ē but to say, ďAs your doctor, Iím telling you that this is like having a malignancy and not letting us remove it,Ē is not a medical opinion.

Nancy: When youíve spoken to other families from different geographical areas, have they experienced a different situation?

Martha: I think so. I think itís different depending on the culture of the general population. Youíre going to get a different response from the Bible belt. Thatís why I move back to Utah after Adam was born because I knew the people there would not question the decision at all. In an academic region, people tend to freak out more. Religiosity of the population and the number of people who are having children with disabilities will make a huge difference. For example, in the Deep South, people told me they had more support than in the Northeast.

Jill: Do you think doctors in general have change their approaches in giving less advice and referring people to other parents of children with disabilities more?

Martha: I donít think so. I havenít spoken at medical conferences for a while but I used to find that the nurses were incredibly open and understanding. I spoke to so many doctors, not to be sexist, who were men who would raise their hands after I spoke and say, ďYou canít let women have the power to make the decision whether they terminate or not. They donít have the knowledge that we have.Ē And Iíd say, ďDude, what knowledge do you have about what itís like to raise a child with Downís syndrome? What kind of knowledge do you have about who should live and who should die? Iím very pleased that you are going through medical school but it didnít train you in this area.Ē People are so afraid of authority figures and doctors are authority figures. One thing youíll hear is that everyone remembers exactly what doctors told him or her right after their child was diagnosed. The impact is so much bigger than the doctor might think. For the rest of their lives, those parents will remember what he said. It is a loaded moment and people, who make careless, off-handed remarks will be these parentsí personal enemies for the rest of their natural lives. Doctors donít realize what their impact is emotionally and psychologically on the parents.

Nancy: Now that your son is 14, reflecting back, did you feel that your expectations were met or is life always a little more unpredictable?

Martha: I remember reading tons of literature during the pregnancy trying to figure out what my life was going to be like. By figuring that out I felt as if I had some kind of control and thatís really important to people psychologically. However, I got so depressed because the expectations that were set for me by the literature I was reading, medical literature mostly, was that when your child is 40 heíll get Alzheimerís, he may have seizures, and he may have heart defects. I was trying to expect all these different things but the range of possibilities was so huge. My expectations of my older daughter were probably equally unrealistic. So I remember very distinctly the day I stopped reading anything about it. I just stopped. And I thought, this is my kid and Iím going to deal with him when he gets here. Itís not that I donít have expectations. What I expect is that whatever happens, weíll deal with it. And thatís pretty loose.

Nancy: I wonder if your attitude has helped in your dealings with people such as teachers in schools by the fact that youíve looked at things head on and youíve made adjustments as needed. In essence, your expectations helped frame expectations for other people.

Martha: I remember realizing that the reason people were afraid in every setting was that they felt they saw themselves. I realized that my understanding of the situation, my attitude towards my son, was going to set the tone for other peopleís attitudes toward Adam. I really had much more control over peopleís comfort with my child than other people did. I assumed that they were acting primarily out of fear and that if I could help calm them, they would be much more sympathetic. So thatís been my approach to schools. I hear a lot of horror stories about schools doing this and schools doing that. I always go in assuming that the personnel are going to have some level of fear and I need to teach them, mainly, by not being afraid myself.

Nancy: I think that youíre offering a very critical piece of information that is valuable advice from a parent. Your sensitivity is a way to help other people move past their fear or their misunderstandings or preconceptions.

Martha: Itís hard having to be the grown-up. When youíre hurting and this isnít what you expected, itís hard not to want the teachers and the doctors to take care of that, but itís not their job! I think it was a huge gift for me having a choice to make because I never felt like a victim, ever. I never felt like fate had dealt me this terrible blow. I felt that Iíd made a choice. It wasnít fun. It wasnít a choice I wanted to ever make but having made it, I always felt that it was my job to try to help other people get it and deal with it. Some of the things that I expected happened and some of them havenít. Adam has had health problems but not bad. He has had set backs. He doesnít speak well. But the things that happened as a result of his birth that were good, were beyond my wildest dreams let alone my expectations.

Nancy: Would you speak to that a little bit, Martha?

Martha: When Adam was born, I was told by people who had Downís kids, ďOh this is so wonderful, you can spend your whole life being an advocate for the disabled!Ē I think that for some people, doing advocacy helps them cope but I thought to myself, I donít cope by being political, I cope by doing what I do. Itís by wanting to be a writer. So I coped with my experience by writing about it. Who knew that would happen? Expecting Adam became the number 1 best seller in South Africa for some reason and we went to Africa. We were out in the middle of absolutely nowhere and the rangers on this preserve in Africa recognized Adam from the book. I got to go to Africa! I met the president of the United States because of Adam! Amazing things have happened and I think itís partly because I really do think that any deep crisis is an opportunity to make your life extraordinary in some way. Itís extraordinary in a negative way. People say that, you know. But what I think a lot of people donít understand is that the extraordinariness can go both ways.

Nancy: What comes across in your book is your familyís feeling that Adam is your gift and an angel in your life. Do have any thoughts about what you would say to families that have an Adam in their lives?

Martha: First of all, you donít need to be sugary pious about it. You donít need to pretend that this is a big blessing if you donít feel it is, because thatís just saccharine. Oh they are all such great babies. No they arenít! Some of them are nasty little critters! But that said I truly do believe that if youíre religious, it gives you a perspective. I think the phrase that I use in my book is that Adam has angels like a dog has fleas. He brings them into the house, you canít get away from them, theyíre all over the place! Thatís for people who donít mind going there. For people who donít go there, what I would say is that your child is a being who will remind you every day what the real meaning of your life is - that is, to experience love and joy.

Jill: You have an older daughter who was 2 when Adam was born. Did you do anything to prepare her for Adamís birth especially as you were unclear about your expectations?

Martha: Yeah we explained it to her. I did notice from a very early age she had a real focus on accepting people who were different, extraordinary for a 3 or 4 year old. I had an acquaintance from high school who had a child with some kind of syndrome that was very deforming especially her face. The child couldnít breath well, made noise when she breathed, and drooled constantly. When this friend came to see me one night, Katie came into the room. I was kind of nervous that she would say something about this baby and hurt the motherís feelings. She didnít say a thing. She sat down and played with the baby! Then she had a little friend come over who immediately started making fun of this child. And Katie, at 4, took this other little girl in another room and said, ďDonít you ever make fun of people who are different in front of me!Ē Thatís not something we taught her. By the time my younger daughter who is 2 years younger than Adam, was born it was such a fact of life for us that we never really talked about it so we never explained Downís syndrome to her. One day when Adam was 3 or 4 he had a friend with Downís syndrome who came over, Joey, theyíre still best friends. After Joey left, Lizzie came to me and said, ďYou know what? I think Joey may have the same thing Adam has.Ē And we were like, ďOh yeah, we forgot to tell you!Ē So it has a powerful effect on siblings too.

Jill: It sounds as if Adam has been a positive force in your whole family.

Martha: Iíd say almost all positive. There are times when Lizzie will get bummed out because she has to do more homework than Adam. We just say, ďWell tough beans. Heís got his problems and youíve got yours. You wanna trade?Ē It was really, really hard for Adam when Lizzie learned to talk. Before she learned to talk, he had somebody to grunt with. The thing about Adam is that Downís syndrome or no Downís syndrome; he has such a mellow personality. Not all kids with Downís do. They are just like anyone else. Some get depressed a lot. But Adam is just mellow. Even so, he was really upset when she learned to talk. He tried so hard to keep up and he couldnít. It just broke my heart. Then, apparently, he came to terms with it and became his old cheerful self. I watched him as a tiny boy going through the grieving process. Allowing the older child to grieve and the younger child to explore feelings of guilt I think are very, very crucial. Allowing children to show their guilt, show their grief, show their anger I think takes the sting out of the situation. Itís just like dealing with anyone whoís grieving a loss. But itís hard.

Nancy: Martha, are there any other thoughts that come to mind from your conversations with parents or from presentations that youíve done - anything else you think would be helpful to include here?

Martha: As an undergraduate in college I majored in Chinese. I was never really good at Chinese but I really, really benefited from having been exposed to Asian philosophy early in my life. The position that I take partly as a result of living in Asia is what they call, ďDonít know mind.Ē That is where you stop living according to your expectations and you become available to experience things as they are. So instead of saying, ďIím going to do this, and this, and this, and that will help the kidĒ, you spend more time saying, ďI donít know, but hereís what weíre going to do. Weíre going to try it out and see.Ē For example, when I put Adam in school I wasnít sure that mainstreaming would be the ideal since he doesnít speak well. So, I took him to a whole bunch of schools with different programs and I watched him. I just watched him with the idea that the meaning of his life was to experience joy. I watched where he felt the most joy. I go to conferences and people can be so obsessed with what is ďrightĒ. Iíve been around people who are really, really rabidly obsessed with full inclusion. What I suggest is to watch your child. Just go into ďDonít know mind.Ē Say, ďI have no idea what this childís life is supposed to be but Iím going to watch, Iím going to pay attention to what makes him happy and what doesnít.Ē

Jill: It sounds as if ďDonít know mindĒ is where you arrived when you were reading all the literature about what it would be like to have a child with Downís Syndrome.

Martha: Yes, I finally realized that I was trying to grieve ahead of time for his Alzheimerís and his seizures. I finally realized was that this was unchartered territory. If I went into it thinking that I had a map or tried to make a map based on my imagination from the things Iíd read, I was going to end up in bad places. So I decided to take the adventure as it came. I read things for help, but not to set solid expectations that would then shatter me or shatter my child.

Nancy: I think thatís incredibly profound advice and helps to bring this interview full circle. This last part that you brought up Martha sets a very progressive and worldly tone to thinking about how we provide and care and share our lives with people with disabilities.

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