by Theresa Shea
“Aside from maybe one lecture at medical school, I’d had no training when it came to dealing with severe mental retardation, so I took the position with much trepidation. You must remember that this was over forty years ago, and societal opinions and expectations of the mentally and physically disabled have improved tremendously since then. Some of the patients who were there when I first arrived had been there for decades. Suffice it to say there was much room for improvement in the conditions in which these people lived. A good portion of the patients who lived at Poplar Grove had Down syndrome, or what they then referred to as mongolism. In fact, they even had a mongoloid ward to house them together. Now here is the part that you might find hard to believe.” He paused and ran his hand over his bare scalp before continuing.
“I first met your birth mother on the mongoloid ward. She had been institutionalized in 1947 when she was just two days old. Her parents were encouraged to put her in Poplar Grove because there were no other options offered back then to parents who birthed a baby with Down syndrome. I could go on, but there’s really no need for me to go into the history of institutionalization now.”
Elizabeth’s tongue felt thick and she spoke with difficulty. “Are you saying that my mother had Down syndrome?”
“Yes.”
She attempted to laugh. “I don’t believe you. That’s not possible, is it?”
“That’s exactly what I thought, but she—your mother’s name was Carolyn—was over seven months pregnant before the discovery was made.”
The information was coming too fast now. Her mother’s name was Carolyn. Was? “Is she still alive?”
Dr. Maclean shook his head. “She died in March of 1967. Her heart had always been somewhat weak, and while the pregnancy didn’t kill her, it was a contributing factor.”
“Can we stop for a minute?” Elizabeth said. “I’m having a hard time processing this.” She tried to recap everything. “Okay. You’re saying that my birth mother had Down syndrome. She got pregnant. Wait. How old was she?”
“Sixteen.”
A mother with Down syndrome and a teenaged pregnancy. The obvious question to follow was one she was afraid to ask. “Who was the father?”
Dr. Maclean had difficulty meeting her eyes. “We don’t know.”
“Who might the father have been?” She couldn’t bring herself to use the personal pronoun in this line of questioning.
“Believe me, I’ve thought about that extensively. An investigation was launched after the pregnancy was discovered, but we never found any concrete evidence. The father could have been an orderly, another patient, a member of another patient’s family who visited, or even, I’m sorry to say, one of the visiting doctors.”
“Are you telling me it likely wasn’t consensual?”
Dr. Maclean held his hand up like a stop sign. “Stop right there. I know where you’re going with this, and I want to caution you before you get there. Patients with mental retardation can still have healthy sexual drives. Because society in general tends to see these people as perpetual children, they often believe they should be prohibited from any sexual activity.”
“Yes, but surely you’re not saying a sixteen-year-old girl with Down syndrome should be sexually active?”
“No, I’m not, but what I am saying is that we don’t know if it was consensual or not. In other words, I’m trying to keep you from going somewhere with this that would be more harmful for you. When Carolyn’s own mother discovered the pregnancy, she had some difficulty dealing with the shock.”
“Whoa, whoa whoa,” Elizabeth said. “Her mother kept in contact with her?”
“Yes.” He nodded. “She visited once a month until the pregnancy was revealed. She never visited again after that and she signed the papers that allowed you to be adopted.”
“And this was when?”
“She stopped visiting in the spring of 1963. The year you were born.”
“What’s her name?”
“I’m afraid I can’t give you that information. You’ll have to go to the government registry to find that out.”
Her extended family. She had an extended family that she’d never been in contact with. “My adoptive parents know all about this?”
“They don’t know about any family, per se, but they do know about your birth mother’s condition.”
“And you were involved with my case because . . .”
He placed his hand on the notebook. “Because your mother was the first case in this country of a woman with Down syndrome becoming pregnant and, on top of that, delivering a healthy child. Initially we followed your case to determine that you were mentally sound. While I wanted you to be placed up for adoption immediately, others wanted to give the prospective parents the full assurance that they were indeed adopting a healthy child. This notebook contains my research notes as well as some information about your birth mother. I realized over time that should you ever want to know more about your origins, I might be the keeper of that information. Before I left Poplar Grove I photocopied some case notes about your mother, but I had to black out the identifying names to maintain confidentiality.”
“When was that?”
“In 1967. The day after your mother died I handed in my resignation. I realized that the only thing keeping me there was my interest in you and your mother, and once she was gone I no longer had any desire to work in that environment.”
“And so you went on to study Down syndrome.”
“Yes. That’s how my career took an unusual turn and how it was connected to you. And perhaps you might also understand now why your offer to raise a baby with Down syndrome might have some biological drive from your earlier life.”
Elizabeth snorted. “You don’t honestly believe that, do you?”
“That there might be a link between your attraction to a baby with Down syndrome and the fact that your mother had Down syndrome?” He spread his hands out, palms up. “Is that too far-fetched for you?”
“Yes, as a matter of fact. It is. I’m almost forty years old and I’ve just found out my mother had Down syndrome. You can’t possibly believe that there’s some biological trigger here, can you?” She looked down at the notebook resting on the teak table before her. What other surprises might be in store for her within those pages?
“Do you have a picture of her?”
He shook his head. “No. Not one. To be honest, it never occurred to me, and by the time it did, she had already passed away.”
“Well,” she said, laughing, rubbing her hands over her eyes. “This meeting certainly didn’t go as I’d expected. You wake up and it’s an ordinary day, and you go to bed and your entire life has changed.”
The dog whimpered on its cushion in the corner; its front paws twitched involuntarily.
“Are you going to be all right?” the doctor asked.
She met his eyes. “I honestly don’t know. I’m probably in shock. Now I have to go out and talk to my husband and my parents and my friends and decide what I want to tell them. Or maybe I just leave here and say nothing at all. I mean, does my life have to change? Does one little piece of information have to change everything? It doesn’t, does it?”
Dr. Maclean put his hand over hers. “No, it doesn’t. Your adoptive parents were the happiest people in the world when they got to take you home. None of that has changed. And everything you’ve done in your life is still your doing. Now you have the back story to your existence that had previously been missing. That can be a good thing or a bad thing, depending on what you do with it. But take it from an old man like me, life’s too short to get hung up on a little bit of barbed wire.”
She smiled, not convinced that his hardships were similar at all to her current situation. But she got his point—pick yourself up, brush yourself off, and keep on going.
“Before I go, what suggestions do you have for my friend and her baby? After all, that’s why I came, remember? To help a friend.”
“I don’t have any advice, if
that’s what you’re asking. What I do know is that most positive tests for Down syndrome result in termination. I can’t advise on that because it’s a personal choice. My role has always been to help the children who are born with Down syndrome, not to counsel parents one way or the other. In my brief career, treatment has gone through three stages. At the start of my career, babies born with Down syndrome were routinely institutionalized. Then in the late 1960s and into the 1980s, parents were encouraged to raise their babies at home. That was the great integration stage. But now that prenatal testing is available, the majority of fetuses with Down syndrome are terminated. I think the numbers might be as high as ninety percent. Maybe even higher. It can make a person feel like his life’s work has been for naught.”
He shrugged his shoulders. “That’s why most of the people you see with Down syndrome these days are adults. The younger demographic that would have continued to be present has been severely reduced. Some advocacy groups believe the intentional eradication of persons with Down syndrome is a form of modern-day eugenics.” He shrugged. “It’s an interesting point.”
The quiet afternoon sunlight fell through the small bay window over the sink. Dr. Maclean walked toward it and rinsed his cup in the sink. His hand trembled as he reached for a striped tea towel and gingerly dried the cup before placing it in the empty drying rack beside the sink.
“In my many years working as a doctor,” he continued, “the greatest epiphany I ever had was the realization that compassion is not an innate trait. On the contrary, I now believe that compassion is a learned behaviour. So those contact moments, those moments when we see a child with Down syndrome, or in a wheelchair, are moments that elicit compassion. What happens to us, as a species, if we limit those moments of contact? There will be fewer opportunities to be compassionate. And if we think of compassion as a muscle that requires exercise to stay strong, then we could be in big trouble.”
He raised his eyebrows so that his forehead was pleated with wrinkles. “Times change,” he said, “but not always for the better. My profession has a lot to answer for. The quest for health at times turns into the quest to label certain conditions as unhealthy and therefore undesirable. Who knows,” he chuckled as he held his hand out before him and watched it tremble uncontrollably, “maybe one day they’ll weed out fetuses who test positive for Parkinson’s disease. I know my death won’t likely be a pretty one, but I’m hoping that I’ve contributed something positive during my lifetime. And I certainly hope that whoever has the lucky job of spoon-feeding me when I can no longer feed myself will have a strong compassion muscle.”
Elizabeth’s eyes filled with tears as she nodded.
“Overall, the families I’ve worked with over the past four decades have grown to accept Down syndrome in their lives. They simply adjust their expectations. They move away from a belief in perfection, and they broaden their ideas of what’s ‘normal.’ That’s something we might all benefit from, isn’t it?”
He returned to the table and sat down. “I’m sorry if that sounded like a lecture.”
“No apologies are necessary.”
“I don’t have many opportunities to share my views these days. I’m afraid they’re not very popular; maybe I’m old school, but I think the more choices we’re given, the more selfish we become.” He pursed his lips thoughtfully. “I’m afraid that as science gives us the ability to pick and choose our children, we will become a much less interesting species, and I can’t help but think the world will have less compassion in it.”
Elizabeth drew the notebook toward her and fingered its hard edges.
“Your mother changed me,” he said. “You wouldn’t know this, but she loved being outside. I remember looking out my office window one afternoon and seeing Carolyn and her mother sitting on the bench by the pond. That was their favourite spot. It was a sunny day, and they sat with their eyes closed and their faces turned to the sun. It was a beautiful sight, and I think of it often, the way their hands were clasped on the bench between them. Carolyn’s mother always brought her a rose. Carolyn loved roses. Roses and robins.”
“I own a flower shop on Jasper Avenue, across from the hospital.”
“And if I’m not mistaken, your middle name is Rose, isn’t it?”
He didn’t miss a beat.
She extended her hand. “Thank you for everything. I really don’t know what else to say.”
He clasped both of her hands in his and held on tight. “It’s always been my pleasure,” he finally said. “I’m not sure what I’ll do with myself now. I’ve been waiting so many years for you to come and see me. What have I got to look forward to now?”
Elizabeth laughed. “Oh, I’m sure you’ll think of something.”
He returned her grin. “You’re probably right. But I’m sorry to say goodbye.” He cleared his throat and looked away. “Now I’ll see you to the door.”
Before she could say anything more, she felt his warm hand on the small of her back, guiding her firmly to the front hall.
Overcome with emotion, she kissed his whiskery cheek, tucked the notebook under her arm, and walked slowly down the front stoop to her car.
FORTY-ONE
Elizabeth sat in her car and stared out the window at the school playground across the street. Sunshine and laughter. It was recess time and children were running in the field in their usual chaotic fashion.
When she got home she’d tell Ron the sad story of her life, or rather, the sad story of her birth mother’s life. The notebook sat on the passenger seat. What was that story? She picked up the book; her hands trembled as she opened the cover.
The first half-dozen pages contained photocopies of the early records of Carolyn’s institutionalization. At two days old she was placed in the infant ward at Poplar Grove. She didn’t walk until she was five. She wasn’t toilet trained until she was eight. She was deemed to be “extremely dull-witted.” When she was twelve she had an IQ of thirty, or, as was noted, the functioning level of an “imbecile.” Notes were scrawled in poor penmanship and with infrequency. There was nothing about what Carolyn’s favourite colour was, or whether or not she liked dolls. What was her temperament? What made her happy?
May 16, 1963
A remarkable event has occurred of which I’m trying to make sense. Today one of my patients’ mothers stormed into my office with her daughter in tow. The cause of her rage was not immediately clear to me, but when she explained herself more fully I understood. It appears the girl is pregnant. What is remarkable here is that she’s not one of the regular mental defectives (who are healthy in body but not in mind), most of whom, I believe, if they’ve reached sexual maturity, have been sterilized. In this case, Carolyn is a sixteen-year-old mongoloid who, after my examination, appears to be into her seventh month of pregnancy.
I will search for other cases, but to my immediate knowledge I do not know of other female mongoloids who have become pregnant. One article from an obstetrics journal published in 1960 did mention, however, that in terms of the reproductive powers of mongoloids with good physical development, one could well imagine that pregnancy would not be absolutely impossible.
Whether or not Carolyn will deliver a child remains to be seen. If she does carry to term, I can only assume that the child will also be a mongoloid.
May 18, 1963
I met today with Dr. Stallworthy, who is on the board of directors here at Poplar Grove. He focused mainly on the legalities of the situation and whether or not the staff were meeting the legal requirements for the patients. He wasn’t keen to launch an internal investigation, but I said it was paramount in determining if this case of sexual activity is an isolated one or a common situation among patients. As so many of the women in our care have been sterilized, pregnancies are not the “normal” indicator to reveal sexual activity. It goes without saying that when dealing with mental defectives and imbeciles, there is much room for exploitation to occur. As the communicative skills of Carolyn are significantly below
average, she will be of little help in revealing who the father of her child might be.
I requested permission to stay with the case and suggested I work with Dr. Cooper, a former colleague of mine who now works in the Pediatric Department at the University Hospital. Permission was granted but only if all of Carolyn’s care was conducted here on site. In other words, Dr. Stallworthy disallowed the notion that Carolyn might be transferred to the university for care once she goes into labour. I believe this has more to do with his trying to keep the reputation of Poplar Grove intact. He also expressed a strong interest in Carolyn’s family and their likelihood to press charges. I told him that the mother had been suitably shocked upon discovering her daughter’s state, but that she’d left the matters in my hands. Staff records show that Mrs. H., Carolyn’s mother, only began to visit her when she was four years old. Monthly visits followed. Nobody but the mother has ever visited.
The seeds for an article have already taken root: Pregnancy and Mongolism. I have not been this excited in my studies for years.
Elizabeth closed the notebook and shook her head. How much medical literature had been written about her? She flipped ahead.
January 1967
Another six months have gone by and three-and-a-half-year-old Elizabeth appears to become more mature by the day. This morning she arrived in a new red velvet Christmas dress with white lace around the collar, wrists, and hem. She even brought her good black patent shoes to replace her snow boots once she arrived. What she seemed most pleased with, however, was the white fur hand muff into which both of her hands could simultaneously disappear. She played magician for a full five minutes, “Now you see them, now you don’t!” before her mother could divert her attention to something new. Santa had been very good to her, she told me; he had given her everything she wanted but a kitten.