Let me ask you a question. Imagine all of us were to bear a disability of some sort;which disability would you choose?
I heard interesting,if not hilarious answers from health practitioners who had gathered for a disability awareness training in Kamuli. The question,being asked by the trainer,a member of parliament (with disability herself) got some answering they would only choose a slight limp,while another lady said she would only choose a slight disability -on her small finger.
Now take a moment to think of people with disability and just how many times they have taken even a second thought in your mind. And yet,everyone of us is vulnerable, and we could get a disability as we go through life;either through accident or sickness.
And by creating an environment through which even people with disability can perform well,it is good for every one. The disability is lessened and they are able to perform to their best ability lessening every one’s burden,work or other wise, in he process.
But I invite you to take a moment and imagine the life of a mother-with disability- and how she goes through life-and mother hood.
Tales of sacrifice and untold suffering have been said of mothers all in the name of creating better life for their children-sometimes unborn. The proverbial mother’s love has also been praised immeasurably as having no match. What then would push an expecting mother to forego that which can only bring about the best for her unborn child?
Findings from a recent research conducted in Kamuli and Mpigi districts among women with disability indicate that up to 8 percent of mothers with disability give birth to children with disability themselves. A senior nursing officer in Kamuli General hospital attributes this partly to avoidance of health care and especially ante-natal services by most women with disability choosing to be attended to by traditional, sometimes un- trained traditional birth attendants.
“Due to insufficient training of nursing officers at most health facilities and general ignorance about disability, expectant mothers with disability are not well received when they come to health centers, sometimes being treated as outcasts”, says Prossy Kalembe,a senior nursing officer in Kamuli General hospital.
Other than the hard conditions faced by these mothers through ignorance of the general populace, why would a mother forego free pre natal counseling and assisted birth in a national hospital for the bushes,thickets and shrines of traditional birth attendants? Despite the fact that with disability sometimes come complications during child birth, the tendency by some women with disabilities to keep away from health centers while pregnant is deeply rooted in attitude.
“When you go to a health centre for antenatal services, there is a lot of pity coming in from every one, including the health workers. A lot of times you will hear words like “how can someone do this to you!” Not even thinking once that we are also human and we have maternal instincts, therefore we want to have children despite our disability” says Nakisuyi Rose,a woman with disability in Butansi parish,Kamuli district.
Although it is an unspoken truth that access to health centers by women with disability is one of the debilitating challenges, those who manage, with difficulty, to get there are also further faced with challenges of entry into the health facility given the often numerous steps with no wheel chairs and ramps to help movement of people with disability. It even gets much harder within the facility, having crawled into an examination room, often full of dirt at that moment to climb onto the examination beds, which are designed only with able bodied women in mind. Toilet facilities are designed the same way, with no thought for women with disability. So with renal challenges that affect pregnant women,imagine a mother crawling into the not so usually clean public toilet facilities.
“It is true that most of our health facilities are not disability friendly, from walk ways and access points to beds, but we try to improvise” argues Prossy.
“However, there is a lot that needs to be done. In some cases, the generally trained nursing officer, even medical doctor has no way of communicating with the expectant mother, like in the case of the deaf and hearing impaired and training in sign language needs to be incorporated into our curriculum.”
Training to change attitudes of both health workers, the general community and women with disabilities has been supported by National Union of women with Disabilities in Uganda (NUWODU) but there is a lot which needs to be done given the expanse yet to be covered. It is through the NUWODU Project ”Sex by choice, not by chance” that women with disability like Nakisu have been told of the benefits of attending ante- natal clinics so as to ensure the safety and health of their un born babies, despite the challenges of getting this service.
A lot of women with disability are living in secret relationships due to stigma attached to relating with a person with disability. This fact robs them of support during pregnancy as the men are either unavailable or unwilling to own up to the pregnancy. The general community perception to women with disability is that they should not have children since they require support themselves which leads most women to conceiving in secret and not even telling their care givers for fear of being forced to abort without their consent.
Teopista Nakisu, talks of a plot by her mother and care giver who conspired with a health officer to perform tubal ligation after her third baby. Teopista is paralyzed in the leg and she suffers on and off mental disturbance. Learning of the process not only violated her human rights abut also left her deeply hurt and distrustful of her sole caregiver. This came about even when the fathers to her children had abandoned her the moment they learned she was pregnant.
“We are not generally loved given our condition, therefore when a man approaches you in secret, you see it as doing some us a favor and we give in only for them to run off when they learn that we are pregnant.”
These and many more such concerned have left mothers themselves in need of family and community support pushed to the wall and unable to make any more sacrifices for their families-mostly unborn children which sometimes leaves them with disability themselves.
If women with disabilities get self-respect through exposure and education, they are able to do and demand more for themselves and their babies. Their immediate family and community also get more supportive and responsive with more sensitization. This is what many expectant mothers with disability need.