Less than 8% of maternity hospitals are accessible to pregnant women with disabilities

The first time Nayara got pregnant, at age 20, the doctor who performed her prenatal care in Brasília only spoke with her grandmother, who summarized the conversation with her granddaughter. Deaf since birth, she says she had no idea what pregnancy and childbirth would be like.

“The stock broke in week 36. I didn’t understand what was happening. My grandmother said I needed urgent surgery. The obstetrician didn’t know Libras [Língua Brasileira de Sinais], did not tell me anything. It just took the baby out of my belly,” she says, in a written interview.

In her second pregnancy, already married and living in São Paulo, she hired an interpreter from Libras to accompany her to the consultations because, again, there was no one in the office to communicate with her.

“The interpreter was wonderful, I kept asking, I had many doubts, for example, what was the use of ferrous sulfate [suplemento que previne a anemia]. The doctor was surprised because I already had a child. But I said I didn’t know anything, no one had explained it to me before.”

At Christmas 2016, the stock market broke and Nayara was rushed by her husband’s family to a private hospital. What she feared most happened again.

“Nobody spoke to me. I was taken to the operating room and I saw a nurse laughing at me because I was so furred [pubiano]. The air conditioning was too strong in my face, I tried to talk to them to reduce it, but no one understood me. I tried to scream, they tied my hands.”

In the bedroom, she says the drama continued. “I used to cry a lot, I felt like I was in a circus. The nurses and other mothers kept looking through the door. Like: ‘Look at a deaf mother who has just left a child,'” she recalls.

Aged 31 and mother of Miguel, 11, and Noah, 5, she says she doesn’t want to get pregnant again for fear of facing what she now defines as obstetric violence. “I wish I had had a humanized birth, in a hospital that offered an interpreter in Libras or a doctor who knows Libras or even some other type of communication. That almost doesn’t exist.”

Nayara is right. Less than 8% of Brazilian public maternity hospitals are adapted to serve pregnant and postpartum women with motor and hearing disabilities. For those with visual impairments, the situation is even more dramatic: none are fully prepared.

The diagnosis of the lack of accessibility comes from an unprecedented survey carried out in 606 Brazilian public maternity hospitals by Fiocruz (Oswaldo Cruz Foundation) and by the Federal University of Maranhão.

Only 4.3% (26) of the institutions are accessible to people with physical disabilities and have, for example, handrails, restrooms with bars and doors with dimensions for wheelchairs.

Only 3.3% have auditory signage with text, pictures, signs, posters or symbols for women with hearing impairment. As the study only assessed the physical structure, there is no data, for example, on the percentage of employees trained in Braille.

And none have tactile signaling. Only those that had essential indicators of accessibility in the reception, admission room and obstetric unit were considered adequate.

The study is part of a larger survey that assessed the quality of obstetric care in the country in public maternity hospitals in the five regions linked to the Rede Cegonha, a strategy of the Ministry of Health created in 2011 with the aim of improving care for women during pregnancy and childbirth and in the puerperium. The work was published in the journal Ciência & Saúde Coletiva.

In a live presentation of the work, Antônio Rodrigues Braga Neto, director of the strategic programmatic actions department at the Ministry of Health, recognized that there are many challenges in prenatal care and childbirth and that the ministry invested more than R$1 billion , in nine months, in maternal and child health, with resources, including, to refit the spaces of the maternity hospitals.

“Our results are frightening. Maternity hospitals are totally unprepared to receive these women”, says epidemiologist Erika Thomaz, researcher and professor at the Federal University of Maranhão, the study’s main author.

The maternity hospitals in the North and Northeast were the ones with the worst accessibility rates for motor disabilities, with 2.3% and 2.6%, respectively. The South (3.7%), Southeast (5.4%) and Central-West (9.8%) regions had, in general, better results, but did not reach minimum proportions in several of the structural criteria studied.

According to Thomaz, the challenge is great because many of the adaptations require structural reforms in the buildings and there are no resources. “Many maternity hospitals operate in old buildings, in units that already existed before the current accessibility policies. And, unfortunately, our authorities have not paid attention to this”, he says.

Similar problems have been reported in primary care units. An analysis of 240 UBS in 41 Brazilian municipalities found that around 60% of the units were inadequate.

In Brazil, there are 17.3 million people with some type of disability, according to IBGE data. Of these, 10.5 million are women.

Thomaz says that other rights of these women, guaranteed by law, such as communication with the medical team, are also being violated.

“Doctors are not trained for this, they rarely have any information in sign language. Communication ends up happening with the caregiver.” But sometimes this right is not respected either.

In June of this year, soldier Walker Sousa, from the Ribeirão Preto (SP) Fire Department, served as an interpreter during labor so that the medical team could communicate with a deaf pregnant woman through a video call. “There was no one at the hospital who knew about Libras,” he said.

The pregnant woman was very nervous, but soon calmed down when she managed to communicate with the firefighter.

Women with special needs are at higher risk of having problems related to pregnancy, childbirth and postpartum compared to the general population, such as higher rates of depression, diabetes and urinary tract infections and preterm birth

“Often, disability is not the only health problem, it has sequelae of other comorbidities, an accumulation of risks for them and for the baby, who can be born with low birth weight, for example”, says Thomaz.

“The health area is not prepared to serve people. Let alone people with disabilities”, says the consultant for inclusion of professionals with disabilities Tabata Contri, who lost leg movements after a serious traffic accident on New Year’s Eve from 2000 to 2001.

The mother of Francisco, 5, says there are barriers to access at all levels for women with disabilities. “If I go to the gynecologist, I can’t find an accessible bathroom if I want to pee before the appointment, if I’m going to have a Pap smear, I have to empty my bladder before at home because I use a tube.”

When you go to take exams, there are not always spaces for the disabled in the parking lot and the windows are high.

“On the first pregnancy ultrasound I had, to listen to my son’s little heart, that day the only elevator was broken. My husband carried me upstairs. If I had been alone, I would have had to leave.”

According to Contri, many women do not have their preventive exams because they are faced with a lack of accessibility or sensitivity in the health area.