Written by: Lake Angela, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
Should neurotypical people be able to decide whether I, or others on the schizophrenia spectrum, can be permitted to pass on genetic information to a child or raise a child?
In our first interview with an expert at a fertility clinic—one of the most extensive and prevalent in the U.S.—I found myself struggling with the onset of panic as I tried my best to maintain the appearance of calm and normalcy. The doctor had just mentioned rather casually that he was “checking” to see if I am capable of carrying and raising a child myself. My spouse was present but did not fall under scrutiny in this critical moment (despite being my life partner and sperm source in the process) because his medical chart confirms his worthiness as neurotypical.
For me it wasn’t so simple: my medical history documents the recurring diagnosis of schizoaffective first dating from more than fifteen years ago. The first parts of the interview progressed quickly due to the doctor’s tacit approval of my intelligence, a trait that causes many neurotypical people to dismiss my neurodivergent experiences and accept me as “high-functioning,” or an honorary neurotypical person, only when it is convenient to do so. On the other hand, some neurotypical and neurodivergent people alike also dismiss me as a representative for the value of people who experience psychosis because I can understand the rules of logic and usually can force myself to adapt to them as necessary, though logic is not my first language and social cues have been a challenge to learn and maintain.
In fact, the second doctor with whom I consulted at a different practice maintained that he had no problem helping me and my partner have a child because he did not believe my diagnoses are true and therefore felt comfortable in dealing with me. A German speaker, the doctor discovered that I work with German language poetry and thereafter held every medical conversation with me in that language, despite his support nurses’ and students’ inability to follow. This was a good way for me to build my reproductive endocrinology vocabulary in German since I had had no reason to learn these terms prior to losing four children in utero and consulting a fertility specialist—but the ability to learn and retain a German vocabulary does not preclude schizophrenia spectrum thinking, as this specialist rather absurdly declared.
The original consultation did not end well. The highly recommended doctor approached the psychiatric portion of my medical history and halted at “schizo—.” I doubt he even finished reading the medical term because his alarmed response was to ask, “What is this psycho disorder, and how did you get it?” Although I was mildly shocked, I thought he might be wondering whether there was any basis for my symptoms in a traumatic medical or personal history. I considered that he might ask such questions, however awkwardly phrased, to try to prevent retraumatizing patients during the regular yet invasive procedures that include transvaginal ultrasounds and tours of the uterus and the longer, more painful procedure in which the doctor guides needles through the walls of the vagina to locate the overstimulated follicles and remove matured eggs from the ovaries.
However, I was wrong to give him the benefit of the doubt; he probed for specific details of the sexual assault I had disclosed. When he asked, “And who performed the rape?” as though a rape were a customary medical procedure, I had had enough. My partner and I interviewed a different practice, and after we were treated poorly there, we transferred to a third practice and a final opportunity to be allowed to try to make and grow a living embryo.
The third practice reluctantly agreed to the provisions of a female physician for all my visits and the agreement that if the lab detected a disorder like a trisomy 21 with which a theoretical embryo of ours was still strongly viable and potentially “compatible with life,” we could choose to transfer that embryo to my uterus. Normally, those labeled aneuploid are destroyed or frozen interminably, and most clinics enforce a policy that they will not transfer an embryo with Down syndrome for ethical rulings concerning the quality of life that seem largely to be based on IQ and length of life. Out of our own set of ethical considerations, we would have elected to see if such an embryo would prosper. Thus, after successfully negotiating agreements important to us, we felt better prepared and more respected.
We also felt more confident due to this clinic’s individualized plans and extensive research that contributed to some of the highest national success rates, and though it was located in one of the wealthiest suburbs of Philadelphia, the clinic also provided us with a financial agreement based on our physical health and relatively low income. The main office even displayed a shining plaque proclaiming an up-to-date non-discrimination policy. I felt a surge of relief when I saw upon my first visit the bold letters on gold background proclaiming the standard of high-quality, respectful treatment for all regardless of race, gender, sexual orientation, religion, and, there it was in the last, important place—disability.
Of course, disability ended up meaning physical differences, not all cognitive-emotional diversity. I was treated to a course of consultations with outside experts and liability waivers before any clinic would accept me and my partner as patients. Three different doctors had to determine whether they believed I was “suitable” to be a parent based on a video interview with me and without my spouse. A doctor of psychology, a psychiatric prescriber, and a perinatologist all had to sign off on my suitability—which they, as neurotypical experts, could determine in half an hour—before my spouse and I could be considered as potential patients, relieving the clinic of liability lest I pass on an unknown genetic marker for a “terrible psychiatric disease” that makes me give birth to mass murderers or any liability in case I prove to be so crazy that I injure my own potential child after enduring years of treatment and losses trying to get one to live.
At first, I was just so appreciative that the specialists all had signed off that I didn’t realize my rights had been swept aside again. Technically, I come in last place on that plaque under the category of disabled, even if I have documentation proving this status in an official capacity. Only after I had calmed down from the expensive effort of passing such a momentous exam did it occur to me that I had been mistreated because of my neurodivergences again, and again my closest advocate and partner in creating the object of the IVF procedures was excluded from the process. It was entirely up to me during the test to conduct myself in the “appropriate” manner and pass myself off as neurotypically able. I was ashamed as I was left asking, What about those people like me who have not learned how to adapt their responses to “pass” or with the integrity and confidence in their differences simply to refuse to play that game? What do periods of psychosis have to do with suitability for pregnancy and childbirth? (Please see my previous articles that dispel common stereotypes if your response was that psychotic thinkers are violent.) Is this just another, well-disguised and medically-condoned attempt to discourage people “like me” from reproducing?
I would say yes, most likely. Before any of my compassionate neurotypical readers react with shock at such a cynical statement, remember that eugenics may not be as lauded a practice anymore, but it is still widespread and continues to influence psychiatry. Recall just a few paragraphs ago when I recounted my conversation with the reproductive endocrinologist who was reluctant to work with someone who might pass on a “psycho disorder.” Keep in mind that although there are many ongoing attempts to locate potential genetic markers for schizophrenia spectrum “diseases,” there still is no proof that psychotic “disorders” are genetic at all rather than a result of interruptions in development caused by trauma responses and the adaptations necessary to live through events an individual finds traumatic.
Most likely there is a genetic predisposition to certain trauma responses rather than a genetic predisposition to a disease. Still, mainstream medicine clings to the disease model as though psychosis really were anything like diabetes (the condition most commonly used for comparison), yet there is no proven organic basis for psychosis as a disease. Even brain imaging that purportedly shows schizophrenic brains suffer deterioration do not control for the variable that those brains scanned in most studies have been altered drastically by harsh neuroleptic drugs and therefore do not “prove” anything except perhaps that neuroleptics in their suppression of cognitive function contribute to the deterioration of those unexercised areas. In fact, brains scanned upon first episode psychotic “breaks” do not show any deterioration or difference to the “normal” brain.
Alternative and much more intelligent medical models theorize that psychosis is a trauma adaptation response, a survival mechanism thanks to the body-mind’s creativity when threatened. If this alternative model is in any way correct, that means that many on the schizophrenia spectrum are punished for being creative and determined enough to survive what otherwise could be nearly impossible living conditions.
Nevertheless, doctors continue to carry out programs of forced sterilization on people like me without their consent. Even in the twentieth century, it was openly acceptable to force hysterectomies upon the disabled as well as Native women, women of color, Latinx immigrants, inmates, the most severely impoverished, and, of course, the so-called mentally ill. Hitler specifically based his model for Nazi sterilization agendas on those of the United States, in which women found to be mentally ill—who were disproportionately also Black and Mexican and thus constituted a double eugenic threat—were eliminated from the population of “breeding” citizens, and death chambers, of course, were modeled on U.S. factory practices of sterilizing, packaging, and disseminating death.
Nazi agendas clearly specified killing schizophrenics to further “purify” the gene pool. This part of the agenda carries on in the contemporary mainstream medical perspective but behind the closed and condoned doors of psychiatric hospitals. Never mind that a number of neurotypical people have babies while on illegal substances, have babies “by accident,” knowingly leave their newborn children with a babysitter who has just tested positive for COVID, etc. These are just a few examples from my neurotypical acquaintances over the past week. Bad decisions are the domain of all humans and are in no way particular or exclusive to any psychiatric group.
Just because I now have my waivers and have lived through the previous losses does not mean my difficulty is over. New challenges have begun. At every appointment—and my partner is not allowed to accompany me to help—I must advocate for myself, insisting I see a female provider as agreed upon to prevent anxiety around flashbacks, correcting mistaken or confusing medication instructions, questioning the dangerous effects of drug interactions, trying to get the doctor to adjust dosages to my body size because the hematologist has warned me that my liver can be damaged by the one-size-fits-all approach.
I am trying not to be anxious about having to call and advocate for myself because the nurses have been annoyed with or confused by my neurodivergent responses. I am trying not to be anxious about being anxious in case the anxiety might impact the efficacy of the transfer and hinder the embryo’s implantation. But when staff calls me “unreasonable” and “too sensitive,” and through a legal loophole even my excellent current doctor can exclude me from the practice at any time if she ever gets the feeling that I am becoming psychotic, it seems impossible not to worry. This process is difficult enough—IVF is painful with its masses of injections and hormonal side effects, the necessity of healing from procedures, the physical changes, and, above all, the frightening lack of guarantee that any of it will work out and be “worth it.” There is no need to add discrimination to the pain and mood disruptions that are guaranteed for anybody undertaking this process.
In case any readers miss my point about rights because they are caught up in perceived moral objections that I can adopt children as an alternative or that IVF is selfish, or any other number of possibilities, I will just mention briefly that adoption should not be viewed as a “replacement” for giving birth to a child. That vantage point can make for an environment of disservice to the adoptive children as well as the adoptive parents. Adoption is an important experience in its own right that is carried out in service to the adoptive children and their needs. Those with low income have fewer choices. While it is possible to “foster to adopt,” the primary goal of foster care is a reunion with the biological family, and some of those with low income may have insurance benefits that extend to IVF, but no insurance policies support adoption. Also, to those making such objections—do you really think I have the legal option to adopt? In a similar way, I wish people who believe it is selfish to consult medical experts to try to give birth to a living child would stop insisting it is also selfish to choose not to have children. There are plenty of good reasons not to do so, including concerns about human environmental destruction, lack of time, resources, or desire, and the desire to pursue intensive interests, among others.
I hope it is clear by now that those on the schizophrenia spectrum are denied the same rights as other people in almost all aspects of living. As I have chosen to engage in a process that keeps me in close contact with an extension of the medical system I must continue to fight, I am fortunate to have found a doctor I both admire and trust. The examples given throughout this article nevertheless illustrate only a small part of the injustice those on the schizophrenia spectrum fight, as the entire paradigm involving a dichotomous “mental health” and “mental illness” must change.
Lake Angela, Executive Contributor Brainz Magazine
Lake Angela is a poet, translator, and dancer-choreographer who creates at the confluence of verbal language and movement. As Director of the international multimedia group Companyia Lake Angela, they offer sessions in guided healing through poetry and movement and provide a platform for schizophrenia spectrum creativity. Their full-length books of poetry, Organblooms (2020) and Words for the Dead (2021), are published by FutureCycle Press. As poetry editor for Punt Volat, they select and publish innovative new poetry in four languages with co-founder Kevin Richard Kaiser. As co-founder of Poetry Midwives Editing Services, they help aspiring writers polish their manuscripts for publication. Lake holds a PhD from The University of Texas at Dallas for their intersemiotic translations of German Expressionist poetry into dance and their MFA in poetry.
