Physical inaccessibility
As shown in Table
2, physical inaccessibility was the major challenge experienced by both male and female PWPDs in trying to access SRH services because of the unfriendly physical facilities. As indicated in the quotations below, most PWPDs pointed out that most health care facilities lack ramps; personnel to assist PWPDs such as helping them climb stairs; wheel chairs and disability friendly beds in case of delivery or admission:
“Almost all the health facilities in our midst have steps and therefore moving upwards to other levels is very hard for us. For example, much as Mulago is the national referral hospital and with qualified medical staff, it is not easy for us to access…” (Female PWPD)
“Even if you have money, if you are an expecting woman who has physical disabilities particularly us with hip joints or round legs, you may never give birth from the private wing on 6
th
floor which is the safest level to deliver from in Mulago hospital. Climbing there is not easy” (Female PWPD)
“I would have liked to accompany my wife during the ANC visits, but it is just too hard for me to climb stairs. Even when health workers are to assist, they usually ignore us (men). May be we are not expected to go there” (Male PWPD)
Consequently pregnant women seeking antenatal and child birth care services have difficulties in accessing these services. The limited access to health facilities characterized by lack of ramps coupled with unfriendly facilities such as labor beds and separate toilets for PWPDs in health units was confirmed through key informant interviews with technical staff at health facilities and Ministry of Health officials as illustrated in the following voice.
“The PWPDs are not well catered for in our hospitals. Labor wards lack special facilities for PWPDs such as adjustable delivery beds and health centers are not easily accessed due to many steps and lack of ramps. Although suggestions have been made on the need to make health care facilities disability friendly, the Ministry of Health has not yet put [this] into consideration” (Key informant)
The lack of appropriate and friendly facilities for PWPDs is a clear manifestation of the marginalization of PWPDS’ SRH health needs. Furthermore, marginalization and vulnerability of PWPDs is illustrated in the reported attitudes of health workers, which were noted to be negative characterized by abusive language used when attending to mothers who come for antenatal care (ANC) and delivery at the health facilities. One of the female respondents noted;
“For me when I went for ANC when I was pregnant health workers said, “even you in your status you sleep with men and more so you accept to conceive? Men do not forgive; imagine they also sleep with this disabled woman”” (Female PWPD)
Negative attitudes of health care providers
As shown in Table
2, health care providers’ negative attitude is the second most important challenge that PWPDs face while accessing SRH services. This is usually compounded by societal beliefs and expectation that PWPDs should not conceive at all:
“You know it is like women with physical disabilities should not conceive at all. When I go for pregnancy checkup, the way midwives look at me, is like I have done something wrong! At times they are too rude to me but I have learnt to ignore them and just aim at getting someone to check the condition of my baby. We do not like the way society and health care providers treat us” (Female PWPD)
“One time I tried to seek for SRH information but the nurse told me that it was not useful for me since in my condition [as a man with physical disabilities], chances of even impregnating a woman seemed limited according to her thinking” (Male PWPD)
Key informant interviews with health care providers yielded the same sentiments, suggesting that negative health workers’ attitudes is a major barrier to PWPDs’ access to SRH services:
“I know when PWPDs get pregnant, they are despised, not expected to conceive due to the assumption that they already have enough problems to deal with. This happens mostly with health care providers” (Key informant)
These findings indicate that PWPDs particularly women suffer from societal stigmatization and blankness under the pretext that they should not become pregnant and give birth owing to their disability. The female PWPDs were concerned about constant reminders on how they should be asexual and abuses related to their appearance which they noted to cause stigma and de-motivation from using health facilities. The above voices illustrate that PWPDs particularly females are expected by society to be concerned more about their disability rather than SRH matters.
Both PWPDs and key informants indicated that health facilities are ill-prepared to address the SRH needs of PWPDs. Most respondents mentioned that health care providers were not trained to handle PWPDs, and that some health care providers subject females with physical disabilities to deliver by cesarean section, thereby minimizing their ability to deliver normally. This is particularly due to lack of skills to handle pregnant females with disabilities, as the following quotations illustrate:
“Service providers are not trained in special skills to handle PWPDs. Health care providers get shocked when they receive pregnant PWPDs at health facilities. This should not be the case…” (Key informant)
“We need to appreciate that delivering PWPDs requires particular skills and surely we do not have them at the moment…..” (Key informant)
Long queues at health facilities
Long queues in the health facilities pose particular vulnerability to PWPDs, whose condition as opposed to the able-bodied clients may not stand the waiting time as these female respondents noted;
“If it was not lining up in health centers, I believe more women with physical disabilities would be going there for services. At times when I would go for ANC services, I would line up for a long time and sometimes I would get so tired and give up. Our hip bones are not strong enough to stand for a long time and when we are pregnant we tend to feel weak and tired most of the time” (Female PWPD)
“What puts me off is that when I go for antenatal care and I am told to wait until they call my number. I do not have a wheel chair and I cannot sit on the bench. I have to sit on the floor” (Female PWPD)
The long queues lead to loss of time and getting tired which is also exacerbated by the physical limitations associated with physical disability and lack of positive discrimination by the health workers where PWPDs are left to line-up with those who do not have disabilities.
Economic challenges/high cost of services
Inaccessibility to SRH services was also associated with the high cost of services. Most respondents noted that the services were costly and that many PWPDs could not afford them given the meager incomes that they earn:
“It is not enough to know that you have a right to utilize health care during delivery yet you cannot afford it when you need it. For sure most of the PWPDs have little income and cannot afford health care; their health rights remain on paper” (Key informant)
“In the better hospitals, health workers cannot attend to us unless if we pay yet charges are so high. Most of us PWPDs resort to giving birth from small health facilities which are not expensive. Even when you do not have all the required money, health workers there are patient with us” (Female PWPDs)
The practice of paying for health services even at public health facilities where such services are expected to be free was a common concern in the narratives of PWPDs. Some PWPDs who could afford to pay, mentioned that they had relatively easier access to health care than those who could not afford.
Marginalization/social discrimination of PWPDs
Marginalization in the provision of SRH services was mentioned as one of the challenges that afflict both men and women with physical disabilities as they try to access services. One of the male respondents lamented about the treatment he received at the health facility as he escorted his spouse for ANC and delivery services.
“I went to hospital with my wife for pregnancy checkup and because we all have physical disabilities, only my wife was helped to climb steps. I was told they did not need me and so whatever was done on my wife, I was not informed. I could not even get someone to address my concerns as a husband expecting a baby” (Male PWPD)
Narratives from male and female PWPDs revealed that it was common for males to be told to leave or to wait from outside while their wives are being attended to. This left males with unanswered questions and concerns regarding to the care their wives and babies would need. Societal marginalization of PWPDs is also reflected in the way they are treated as they travel to seek care. Given their low economic status, most PWPDs in this study used public transport – i.e. taxis – with few having their own private cars. Among the respondents only 4 (10%) out of the 40 participants used their private cars to travel to seek care. The encounter with public transport was described as a nightmare for PWPDs characterized by marginalization by both taxi operators and fellow passengers as some respondents explained;
“…Even you in your condition with a pregnancy, what are you going to do in town?” (Female PWPD)
“As a woman was boarding a taxi that was heading to the ANC center, she heard other women complaining loudly ‘…Bakateyamba bajja kutulwisa’ literally meaning persons who cannot help themselves will delay us” (Female PWPD)
Some community members also assume that PWPDs do not have sexual interests. Self-pity and the desire to conform to societal expectation among PWPDs further constrain access to SRH services.
“Most PWPDs know where to find these services but at times they fear to be seen seeking them because the rest of the society thinks we do not need these services. For example people do not expect a PWPD to contract HIV because they assume we are not sexually active. Society forgets that we are normal human beings with feelings as well” (Key informant)
Both male and female respondents noted inherent societal expectations and misperception that PWPDs do not need SRH services including SRH information. Consequently, there is overprotection of children with physical disabilities especially girls through denial of information as the following quotation illustrates:
“Girls with physical disabilities are so much protected by their care takers who assume that they will not engage in sex. They are usually kept away from discussions about sex and reproduction at home and in communities. Such PWPDs usually get this information when it is too late usually at health facilities” (Key informant)
In such situations, PWPDs miss out on opportunities to get health information that could help them to make informed decisions. Such denial of information increases PWPDs vulnerability to SRH problems.