Invisible women. Medicine can't see, can't hear and can't speak.

Invisible women.
Medicine can't see, can't hear and can't speak.

Dr Marie Flores works at the AltaMed clinic in Pico Rivera. In her office hangs a portrait of the artist Frida Kahlo. When she takes her hormonal fertility drugs one busy morning, it is her next step towards motherhood after a devastating miscarriage. It is also an act of faith in a medical system that is desperately failing disabled women - like her.

The wheelchair-bound doctor is a flagship image of modern diversity. A pregnant woman in a wheelchair, on the other hand, is ostracised. Even when the doctor and the pregnant woman are one and the same person.

The ostracism is exactly the same as it was 100 years ago. It met Frida when she turned up at Henry Ford Hospital expecting a baby (she suffered from a multi-generational disability caused by childhood polio and reinforced by a later accident).Marie Flores, like Kahlo,is struggling to become a mum. How many women with disabilities have gone through a similar experience?

No one hears their stories. They are invisible.

Monika Mitra, Professor of Disability Policy at Brandeis University and Principal Investigator at the National Centre for Research on Parents with Disabilities, searched for professional literature on pregnancy in the context of disability and was surprised to find... virtually none.

There are no such women in maternity textbooks. They are not depicted on nappy packs or included in obstetric statistics. Although disabled women get pregnant and give birth at the same rate as non-disabled women, most obstetricians know little more about them than Kahlo's doctors in Detroit in 1932. At every turn, in virtually every respect, modern medicine turns its back on them.

"While disabled doctors, artists, athletes and politicians
are increasingly seen as normal,
the world still cannot imagine disabled mothers."

"I am concerned with pregnancy and the prenatal period. But every time I say this, people assume that I deal with children with disabilities, not parents with disabilities. As if parents can only be non-disabled?  This is a common assumption: that a disabled person cannot have children", says Professor Monika Mitra.

This assumption persists in part because it was legally enforced for most of the last century, even when integration of disabled children was already mandated in American public schools.

"The forced sterilisation of disabled adults was still legal in 1979."

"I grew up in the Bay Area at the height of the disability rights movement. I can't think of a category of disabled person I haven't seen pregnant," says Rebecca Cokley, an activist and disability rights programme specialist at the Ford Foundation, who suffers from the most common form of dwarfism.

People with disabilities who have grown up in an atmosphere of rights to education, work and access to public spaces are shocked by the stigma they face when they try to have children. Even today, public health authorities keep detailed records of contraceptive use by women with disabilities. At the same time, they do not collect any data on what happens to these same women when they become pregnant.

The results of the new study show that the result is an avalanche of harm that cannot be explained by medical complexity or anatomical differences.

• A blind woman is twice as likely to give birth by caesarean section as a sighted person.
• A wheelchair-bound woman such as Dr Flores, who has a genetic neuromuscular disease, usually goes through her entire pregnancy without being weighed.
• Mothers with intellectual disabilities breastfeed half as often.
• Women with physical disabilities have a significantly increased risk of postpartum depression.

Dozens of interviews with obstetricians, researchers, activists and disabled biological parents show how these statistics shape the reproductive lives of families.

"Patients with disabilities are more likely to have complications of pregnancy, but this is not a result of the disability, but a lack of appropriate care", says Dr John Ozimek, a maternal-fetal medicine specialist at Cedars-Sinai Medical Center.

"Pregnant women with disabilities do not even receive standard prenatal care."

Standard pregnancy management begins with the assumption that the patient can become pregnant and this is often the first step at a medical appointment. Pregnancy is one of the most statistically normal biomedical events a person with a uterus can experience. Most women between the ages of 15 and 50 receive the same series of questions and a pregnancy test at the doctor.

However, for women with disabilities, this norm is often treated as abnormal. Research shows that women with disabilities are more likely to accidentally become pregnant than women without disabilities - yet the common belief that they cannot be pregnant is devilishly entrenched.

"How did you get pregnant? Do you really have a man? Do you really have sex?
When you're in a wheelchair, you should be asexual."

"Strangers were really asking me this question: can you have sex when I was ALREADY pregnant! Well, yes, I can. We actually have a lot of sex," recalls Franck, mother of twins.

People often see the invisible only through the prism of physical differences and often harass them with their suspicion, curiosity, pity or show of disgust. For people with disabilities, pregnancy offers a brief taste of normality; motherhood is also linked to their gender identity.

 "Others were always coming up to us, trying to take our picture or asking intrusive questions". -Bay Area mum Elizabeth Campbell-Soper, who suffers from Achondroplasia, the most common form of dwarfism, recounts.

"I was excited to see how they would react when they saw I was disabled and pregnant. Yes, I have sex and I am able to create and sustain life. I wanted people to look at me and realise that."

"For me, part of identifying as a woman is wanting to be a mother, so when others judge you and question your ability to do that, it's very, very painful", Midoctor Flores says.

"You think that doctors say this to all pregnant women?"

That was the postscript that Kahlo wrote to her personal physician and confidant, Dr Leo Eloesser, in May 1932, after a doctor in Detroit told her that she could safely continue her pregnancy and deliver her baby by caesarean section.

Caesarean section remains the unquestioned standard of care for disabled mothers, whether it is medically indicated or not. Women consistently admit that decisions about the mode of delivery are made without their input.

Caesarean sections are sometimes the only safe method for mothers with certain medical conditions that make childbirth impossible. However, even women who have had it planned often say that the experience has been made more difficult, traumatic or dehumanising because of the doctors' approach to their disability.

For Franck, a mother of twins, the operation took an unexpected turn when she was already lying on the operating table.

"They told me they were going to make a small incision in my bikini.
Then they laughed-oh, that's just a joke!
and they just gutted me like a fish."

The epidural failed, so the incision along the length of my torso was quickly stapled rather than sutured. When the staples loosened, her abdomen was stuffed and tied, leaving her unable to visit newborns in the NICU or even bathe. Not once was she offered a breast pump or any other way to connect with her babies.

At the same time, parents with disabilities continue to disproportionately lose custody of their children. In the US, in more than 20 states, custody can be lost solely on the basis of a disability determination, and in at least six states, physical disability alone remains sufficient cause for termination of parental rights.

" I worry about this because I know that people with disabilities are more likely to have their children taken away. Anyone who knows me will confirm that I am a wonderful mum, but what if I send them to school and they get a bit dirty there?"¬ says BlackFranck.

Self-portrait of a mother

It is tempting to draw a bleak portrait of disabled motherhood in the US. However, like the bright Tehuana dresses Frida Kahlo wore to hide a leg shortened after polio, the data can as much obscure as reveal truths.

For example, one that women with disabilities want children as much as women without disabilities and are prepared to fight much harder to have them, despite public denial of their existence, medical ignorance and overwhelming social stigma.

"Many disabled people say that despite the hardship, pregnancy and childbirth have brought them profound healing after hearing all their lives that their bodies are wrong.
Often motherhood was the first moment for them in which they were perceived and saw themselves as normal."

"I've had some really lovely experiences of children looking at me and saying: Mum, It's really nice to be seen that way. It's a very pure feeling because that's all that mattered to them," says Campbell-Soper.

"I've achieved a lot of things, but this was something, wow! It gave me so much joy and pride to say it out loud to all the people in the world thinking I couldn't do it. It was nice to think: you were wrong", Dr Flores recalls her pregnancy, emphasising that motherhood remains the unfinished centre of her complex self-portrait.

Sonia Sharp is an editor of the Los Angeles Times newspaper covering education and disability rights. She wrote the article we cover here with the support of a 2021 California Fellowship organised by the USC Annenberg Center for Health Journalism.