As part of the Women’s Health project, the team speaks with women with disabilities in local communities, conducts surveys and explores their experiences of accessing healthcare.
Women speak not only about the physical inaccessibility of healthcare facilities, the lack of adapted equipment or transport difficulties. Other barriers include previous negative experiences, insensitive treatment, a lack of clear information, and societal stereotypes about the sexual lives, pregnancy and motherhood of women with disabilities.
To discuss these issues in greater depth from both medical and ethical perspectives, the project team spoke with Yuliia Davydova, Honoured Worker of Science and Technology of Ukraine, Professor, Doctor of Medical Sciences, Head of the Department of Obstetric Problems of Extragenital Pathology and Ethical Issues in Medicine, Master of Public Administration (MPA), and expert of the Steering Committee for Human Rights in the Fields of Biomedicine and Health (CDBIO).
“Inclusive healthcare begins with how we approach the person”
Over the years, you have formulated your professional philosophy as follows: not every doctor can be an expert in every type of disability, but every doctor should be willing to learn. What does this mean in practice?
I do not expect every doctor to be an expert in every type of disability. But I do expect every doctor to be willing to learn, ask questions, feel comfortable seeking advice from colleagues and, most importantly, see the woman in front of them not as a “complex case”, but as a person who needs respect and high-quality healthcare.
Disability should not overshadow the person or determine the quality of healthcare they receive. This approach does not mean that we downplay medical risks. On the contrary, we assess them carefully, while ensuring that a diagnosis does not replace the person herself.
Do medical education institutions adequately prepare doctors to work with women with disabilities?
Unfortunately, not yet.
Most doctors genuinely want to help their patients. At the same time, during their training they rarely receive systematic knowledge about communicating with women with different disabilities, adapting gynecological examinations, ensuring accessibility of healthcare, patients’ rights or multidisciplinary care.
A doctor may graduate from medical school, complete their internship and work for many years without ever being taught how to examine a woman with a spinal cord injury, how to manage spasticity during an examination, or how to arrange an appointment for a person who requires an alternative means of communication.
As a result, doctors often acquire this experience independently once they are already in clinical practice. But this is not an individual doctor’s problem. It is a challenge for the entire medical education system.
At the same time, I can see positive changes. More and more professional communities, scientific societies and healthcare institutions are paying attention to patient-centred care, ethical communication, inclusion and universal design in healthcare environments.
The training of a modern doctor should include more than clinical knowledge. It should teach doctors how to work with different people, respect their dignity, listen to them and adapt care to their individual needs.
Inclusive healthcare does not begin with expensive equipment. It begins with professional education, respect for human dignity and a willingness to listen to the patient.
What should a doctor do if they have no experience of working with a particular type of impairment?
They should not take on more than they can professionally manage, but neither should they leave a woman alone with the problem.
A doctor should honestly assess their own experience and the capacity of the healthcare facility. If the necessary equipment, trained team or experience in managing a particular condition is not available, the doctor should consult colleagues, seek a second opinion or refer the woman to a more experienced specialist.
Referring a patient to a colleague is not a sign of professional weakness. On the contrary, it is a sign of responsibility.
The situation is more difficult in smaller towns and villages, where the choice of specialists is limited and a woman may not always be able to travel to another location. In such cases, remote consultations between doctors or outreach healthcare services may form part of the solution.
The absence of an immediate solution should not automatically mean that care is denied.
“Barriers that can delay a preventive visit for years”
Why might women with disabilities go for years without seeing a gynecologist?
Most often, the reason is not that a woman does not want to take care of her health. It is the combination of barriers she has to overcome.
The first barrier is physical accessibility. Not all healthcare facilities have an accessible entrance, a lift, sufficiently wide doorways, an accessible toilet or a gynecological examination chair that can be adjusted to meet a woman’s needs.
Sometimes a person can enter the building but cannot independently reach the consultation room. She may be able to enter the room but be unable to transfer onto the examination chair or use the toilet.
The second barrier is communication. A woman may fear judgement, insensitive questions or disrespectful treatment. At the same time, a doctor may genuinely want to help but may not know what questions to ask, how to offer assistance or how to adapt the examination.
The third barrier is psychological. If a previous experience was negative, painful or humiliating, the next visit may be postponed for years.
The fourth barrier is information. Some women mistakenly believe that because of their disability, the absence of sexual activity or the absence of a regular partner, they do not need preventive examinations, cervical cancer screening, contraceptive counselling or pregnancy planning.
The main task of modern healthcare is not to wait for the patient to overcome all these barriers on her own. We need to ensure that there are progressively fewer barriers to overcome.
Do societal stereotypes affect attitudes towards the reproductive health of women with disabilities?
Yes. There is still a misconception in society that women with disabilities are less likely to have sexual relationships, do not plan to become mothers and therefore supposedly have less need for reproductive healthcare.
I have repeatedly heard the question: why should so much attention be paid to this issue if women with disabilities supposedly do not have sex and do not plan to have children?
Women have also told me that such comments have been directed at them personally.
This is both false and dangerous. Women with disabilities have the same needs, rights and risks in relation to reproductive health as other women.
Inclusion also requires an information policy that recognises a woman’s right to sexuality, relationships, contraception, pregnancy and motherhood.
Following an injury or diagnosis, a woman should receive information not only about rehabilitation and treatment of the underlying condition that led to her disability. Healthcare professionals should also talk to her about her sexual life, reproductive health, the possibility of pregnancy and family planning.
We cannot automatically tell a woman: “You will not be able to carry a pregnancy”, “You will not be able to give birth” or “You will not be able to care for a child”.
The doctor’s role is not to find a reason to prohibit something, but to assess the specific risks, explain them to the woman and work with her to identify the safest possible option.
What can happen when preventive examinations are postponed?
Regular preventive examinations are intended to identify a problem before it causes serious consequences.
Postponing a visit to a gynecologist may result in later detection of precancerous cervical changes or cancers that are considerably more treatable when detected at an early stage.
Delayed diagnosis of pelvic inflammatory disease can lead to chronic pain, impaired reproductive function and other complications.
Without regular follow-up, benign conditions affecting the uterus and ovaries, menstrual disorders, endometriosis, hormonal disorders or infections requiring treatment may go unnoticed.
However, our task is not to frighten women with possible consequences. Our task is to create conditions in which preventive healthcare is accessible, safe, comfortable and based on respect for human dignity.
Then prevention becomes not an obligation imposed on a woman, but a natural part of caring for her own health.
What preventive care should women receive regularly, regardless of whether they have a disability?
Depending on their age, health status, individual risk factors and national recommendations, women should have gynecological consultations, cervical cancer screening and breast examinations, as well as testing for sexually transmitted infections when indicated.
It is also important to monitor blood pressure, body weight, blood glucose and cholesterol levels, as reproductive health is closely connected with overall health.
There is no single list of examinations or one screening frequency that is appropriate for everyone. The best approach to prevention is an individual follow-up plan developed together with a doctor.
If a woman is planning a pregnancy, preconception counselling is advisable so that potential risks can be assessed in advance, treatment for chronic conditions can be reviewed and her health can be optimised before pregnancy.
Which symptoms should not be ignored?
Severe or unusual lower abdominal pain, heavy bleeding, bleeding outside the menstrual period or after menopause, fever accompanied by pain, foul-smelling discharge, sudden severe pain during pregnancy, and any rapid deterioration in general health require prompt medical assessment.
A woman should also seek medical advice if her usual menstrual pattern changes, she develops pain during sexual intercourse, notices a lump or other abnormality in the external genital area or breasts, experiences persistent itching, or has other symptoms that do not resolve.
This is particularly important for some women with disabilities. Because of impaired sensation, a person may not feel pain or may experience it differently. Attention should therefore be paid not only to pain but also to other changes in the body.
“Examinations without coercion: adapting healthcare to a woman’s needs”
What can a woman do if she has previously had a traumatic experience during a gynecological visit?
She can begin with an online consultation or a first appointment without an examination.
A first visit to a gynecologist does not necessarily have to include an examination in a gynecological chair. If a woman feels anxious, has had a negative previous experience or simply is not ready, the first appointment can be devoted to getting to know each other and talking.
A woman should understand why a particular procedure is needed, what exactly the doctor is going to do and what she may feel. She must be able to ask for a pause or stop the examination at any time.
This is not a privilege. It is every person’s right.
Trust is not established within a few minutes. It develops gradually. And trust is fundamental to high-quality healthcare.
A woman should understand why a particular procedure is needed, what exactly the doctor is going to do and what she may feel. She must be able to ask for a pause or stop the examination at any time.
This is not a privilege. It is every person’s right.
In some cases, the first consultation may include a transabdominal ultrasound without an examination in a gynecological chair, if this method is appropriate for the clinical situation. In other cases, the examination can be postponed until a subsequent visit.
How should an examination be conducted after a traumatic previous experience?
The doctor should explain every stage of the examination and obtain the patient’s informed and voluntary consent before any procedure.
The woman and doctor can agree in advance on a word or gesture that will indicate that the patient wants to pause or stop the examination.
Sometimes all that is needed is a slower pace, more time for discussion or the presence of a person the woman trusts.
Doctors should remember that every negative experience is real for the person who lived through it. A woman’s fear should not be dismissed with phrases such as “That happened a long time ago”, “There is nothing to be afraid of” or “Everyone goes through this”.
Protecting the patient’s psychological safety is just as important as protecting her physical health.
Does an examination always have to be carried out in a standard gynecological examination chair?
No. There is no universal approach that works for everyone.
Depending on the woman’s condition and the purpose of the examination, it may be carried out in a gynecological examination chair, on an examination couch, a stretcher or an operating table.
Sometimes changing the woman’s position is sufficient. In other situations, it may be appropriate to separate the consultation and examination into different appointments. Sometimes an ultrasound or another diagnostic procedure should be carried out first.
The main principle is that the patient should not be forced to adapt to the system. The system should learn to adapt to the person’s needs.
How should an examination be carried out if a woman experiences spasticity?
How should an examination be carried out if a woman experiences spasticity?
Spasticity can be exacerbated by a hard surface, anxiety, pain, a change in body position or an attempt to straighten the legs by force.
The legs must not be forced apart or pushed down. This can increase spasticity and cause pain or injury.
Some gynecological examination chairs have padded leg supports. These make it possible to position a woman without excessive stretching of the muscles. If such equipment is not available, the position can be adapted with the assistance of healthcare professionals who carefully support the woman’s legs.
The examination can also be performed on an examination couch. This may be less convenient for the doctor because of the height of the surface, but the examination can still be performed and provide clinically useful information.
All of this should be planned in advance. During the initial conversation, the woman can explain whether she has experienced spasticity during previous examinations, which positions are comfortable for her and what assistance she needs when transferring or changing position.
“The doctor should speak to the woman first”
How should a doctor communicate with a woman who attends an appointment with a support person?
The doctor should address the woman herself first.
The presence of another person does not automatically mean that they should participate in the medical conversation or make decisions.
At the beginning of the consultation, the doctor should ask the woman whether she wants the support person to remain during the conversation or examination. The doctor should also clarify what information may be discussed in that person’s presence.
If the woman wants to speak privately, she should be given the opportunity to do so.
Privacy is not only the right to confidentiality. It is also the right to make one’s own decisions about one’s health and to decide who may be present during discussions or medical procedures.
The international disability movement has a well-established principle: “Nothing about us without us.”
In healthcare, this means that even when a relative, personal assistant or guardian is present, the doctor should address the woman herself first, involve her in decision-making and respect her autonomy to the greatest extent possible.
This is not simply a matter of etiquette. It is an expression of respect for human dignity and one of the foundations of modern medical ethics.
How can communication be adapted for women with different disabilities?
Communication should be adapted to the person’s needs rather than expecting the person to adapt to the system.
A woman who is deaf or hard of hearing may need sign language interpretation or written communication. If she does not want to discuss personal matters in the presence of an interpreter or family member, communication can take place using a tablet, computer, phone or paper.
In my practice, there have been cases when a patient wrote her questions on a tablet in advance and I responded to each of them in writing. This is a completely valid and effective way to communicate.
For a woman who is blind or has low vision, it is important to explain clearly what is happening, describe actions before carrying them out and never touch her without warning. Information materials should be available in different accessible formats.
Not all people who are blind or have low vision use Braille, particularly those who lost their sight in adulthood. One format alone is therefore not sufficient.
If a patient has a speech impairment, the doctor should give her enough time to express herself, should not interrupt her, and should not automatically direct questions to the person accompanying her.
For women with intellectual or psychosocial disabilities, plain language, sufficient time for explanations and checking that the patient has understood the information correctly are particularly important.
The most important rule remains unchanged: address the woman herself first.
What helps build trust between a doctor and a patient?
Above all, a willingness to listen.
I often ask: “What is most important to you right now?” and “How can I help you achieve this as safely as possible?”
It can be useful for a woman to write down her questions in advance. During an appointment, anxiety can make it easy to forget important details. A written list helps structure the conversation.
After the consultation, the woman should also receive a clear plan: which tests or examinations she needs, what to do next, when to return for follow-up, and which symptoms to look out for.
The doctor should explain the risks and options honestly, while the woman remains the central participant in decisions about her own health.
“When disability overshadows diagnosis”
What is diagnostic overshadowing and why is it dangerous?
Diagnostic overshadowing occurs when new symptoms are automatically attributed to a known condition or disability without considering other possible causes.
For example, chronic pelvic pain may be attributed to a neurological condition when the actual cause could be endometriosis.
Menstrual irregularities may be attributed to stress, medication or an underlying diagnosis, even though they may be manifestations of an endocrine or gynecological condition.
If a woman has heart disease and develops weakness, nausea or dizziness during pregnancy, every symptom should not automatically be attributed to her cardiac condition. It is necessary to establish whether the symptom could be related to pregnancy or another condition.
Every new symptom deserves careful assessment.
This is why it is important for an obstetrician-gynecologist to be familiar with the assessment of the specialist managing the woman’s underlying condition. This helps distinguish between manifestations of a known condition and the development of a new obstetric or gynecological problem.
“Pregnancy and motherhood: assessing risks rather than deciding for the woman”
Does having a disability automatically mean that a pregnancy will be considered high-risk?
No. Disability in itself does not automatically mean that a pregnancy is high-risk.
Risk is determined by the specific medical condition, its course, the person’s functional status, coexisting conditions and the woman’s individual circumstances.
Two women assigned the same disability group may have completely different medical risks.
This is why modern medicine assesses not an abstract concept of “disability”, but the health of the individual person.
In your practice, have you worked with women with disabilities who became mothers?
Yes. For example, I performed two Caesarean sections for a woman with severe cerebral palsy, difficulty walking and pronounced spasticity.
Because of the spasticity, vaginal birth was not possible. But this did not mean that she could not carry a pregnancy, give birth to a child or be a mother. We took her condition into account and selected the safest mode of birth.
She needed assistance when transferring onto the examination chair. We also carefully discussed who among her family members would be able to support her after the birth. Her husband and mother were there to support her. At the same time, decisions about pregnancy, childbirth and motherhood were made by the woman herself.
She gave birth to two children. When, after her second Caesarean section, we discussed her future reproductive plans, I asked whether she considered her reproductive plans complete. She replied: “No. We are still thinking about having a third child.”
This experience clearly demonstrates why a woman’s reproductive potential should not be judged solely on the basis of her appearance, mobility or diagnosis. We need to assess her specific health status, potential medical risks, support needs and the resources available to her family.
Disability in itself is not a reason to decide for a woman whether she can become a mother. The doctor’s role is to provide complete information, assess risks and help make pregnancy and childbirth as safe as possible, rather than take away a woman’s right to choose.
Where should a woman with a disability start when planning a pregnancy?
With preconception counselling.
If necessary, the first consultation can be held online, particularly if the woman lives in another city or has difficulties with transport.
The doctor first gets to know the woman and establishes which condition or injury led to her disability, how the condition has changed over time, what treatment she is receiving, and what has been documented in the assessments of relevant specialists.
The activity of the underlying condition should be assessed, medication should be reviewed, potential risks for the woman and future child should be identified, vaccination status should be checked, any identified deficiencies should be corrected, and any necessary medicines should be discussed.
The scope of examinations is determined individually. It will usually include consultation with an obstetrician-gynecologist, an assessment of the woman’s overall health, laboratory tests and investigations based on her individual risks.
Where coexisting conditions are present, consultations with a cardiologist, endocrinologist, neurologist, nephrologist, rheumatologist, geneticist or other specialists may be required.
The purpose of preconception counselling for a woman with a disability is not to find a reason for her to give up the idea of pregnancy, but to make pregnancy as safe as possible.
Why is a multidisciplinary team important?
Pregnancy can affect the course of an underlying condition, while the condition itself can, in turn, affect the course of pregnancy.
No single specialist can have the same depth of expertise in every area.
A cardiologist may be an expert in heart disease but may not know all the specific aspects of pregnancy management. An obstetrician-gynecologist may have extensive expertise in pregnancy but require advice from a neurologist, rheumatologist or nephrologist regarding the woman’s underlying condition.
A multidisciplinary team helps overcome the limitations of any individual specialist’s expertise.
Its composition should be determined on an individual basis. The purpose of the team is not to make the patient’s life more difficult by requiring numerous consultations. On the contrary, it should help identify the safest options and establish a clear and coordinated care pathway.
Logistics should also be considered separately: whether the chosen healthcare facility is accessible, how the woman will travel to appointments, whether she needs assistance with transfers or mobility, and where she can stay if she lives in another city.
“You have the right to high-quality, accessible and respectful healthcare”
What would you like to say to women who postpone seeing a gynecologist?
First, find a doctor whom you trust and with whom you feel able to speak openly.
Second, do not postpone a preventive visit simply because nothing hurts.
Third, remember that reproductive health is just as important a part of overall health as the health of your heart, lungs or kidneys.
You have the right to ask why a particular procedure is necessary. You have the right to know what will happen during an examination. You have the right to ask for a pause, decline a procedure or postpone an examination until another day.
You have the right to decide for yourself who will be present during a consultation.
And most importantly, you have the right to high-quality, accessible and respectful healthcare.
Oleksandra Perkova, Communications Manager of the Project
