What's desirable about this one?

DebbieM
Posted May 27, 2019 from Ghana

There may be gaps between the able and disabled populations in countries across the world. But in my home country, Ghana, this gap is clear, especially in the areas of access to information, health and education.

Early 2015, I was working on a project in one of the municipalities of the Eastern Region of Ghana. This project required for us to engage and work with health workers at the primary health care delivery level (from the District hospital to the Community-based Health Planning Services (CHPS) levels). On this particular day that i'm writing about now, we had a meeting with a group of nurses (Community Health Nurses, Midwives, Registered General Nurses, etc). The venue of our meeting was the waiting area of the Reproductive Health unit of the hospital. Just when we had finished with all the niceties and introductions to get into the day's agenda, two women walked into the waiting area looking for one of the midwives we were working with. Allow me to describe these women - the older looking one, looked quite upset with worry written all over her face and yet her words when she spoke, sounded almost apologetic! The older looking lady ( I cannot guess her age), is a person with Down syndrome, she looked scared and shy. We excused this nurse to attend to them.

We continued the meeting and the nurse joined us later when her clients left. When she sat down, her colleague sitting by her asked if all was well. She said yes but she is embarrassed for the men, loud enough for all of us to hear. Of course there was a man among us, so her colleagues tried to shush her but she appeared so 'enraged' that she just continued. 'How can anyone rape a person like that, what is so desirable about a 'mongo''? - This nurse was enraged that someone found this poor lady with Down syndrome attractive enough that they could not control themselves and had to rape her! Which 'pervert' will target a 'mongo' for their sexual gratification? I wasn't sure which was making her upset, the fact that a girl had been raped by a man, or that the girl raped was someone with Down syndrome or 'mongo' as she chose to refer to her? I was conflicted as I listened to her narrative and the ensuing comments......let's just say we managed to 'calm' her and continue with the meeting.

My issues with the above......

Apparently, the young lady got pregnant as a result of the rape and the mother brought her to the hospital to seek advice and care, knowing what she does about her child, I understood the worry I saw on her face. She suspected pregnancy when her daughter started having what looked like morning sickness and she thought to bring her to the hospital. Is she blaming herself for not protecting her daughter from the predator of a man who raped her? Is she imagining the trauma her daughter might have gone through? But as a mother, did she even know she could have accessed contraceptive care for her child, and if she did, did she know which facilities to go to in order to receive dignified service? What informed choice and decision can she make right now on behalf of her daughter? How does she explain the expected changes to her beloved daughter's body to her?

Does the 'enraged' nurse know she had breached the confidentiality code by just sharing the unsolicited details of this client/family with us? In her 'rage', did she provide comprehensive and targeted care to this family? Did she even know that in her 'rage', she objectified this scared young lady? How was she going to support and empower the mother to support her daughter should they decide to go ahead with the pregnancy? What other services will she recommend for this family, eg: psycho-social counselling and support? If we take out the issue of rape, did this nurse know that this young lady with Down syndrome is a sexual being, that she has the same feelings and desires that you and I have? That she has every right to want have a sexual expression (guided of course)? How much does this nurse and others like her really know about intellectual disabilities and how to care for the peculiar needs of those living with it and their families?

Me fellow country man and former Secretary General of the UN, the late Kofi Annan said, "It is my aspiration that health will finally be seen not as a blessing to be wished for, but as a human right to be fought for.” Who is fighting for the health needs of this marginalized population around the world? In Ghana, when we mention disabilities, everybody thinks about the physically challenged, the hearing and speech impaired and the visually challenged persons. So individuals living with intellectual disabilities like Down syndrome, as in the case of this young lady, are the marginalized of the marginalized population of persons with disabilities.

Health is a human right and access to healthcare services and information is a right that must be upheld by everyone. We can't continue to fail this population. Do I blame this nurse? I don't really know because she is a product of the 'system' - how proactive are our governments to the needs of persons with disabilities? But I know probably she could have handled (the situation) herself better with the issue she was confronted with.

As we mark this important day on 28 May 2019, tell me what you are doing or can do to improve the reproductive health of individuals with intellectual disabilities.

This story was submitted in response to Menstruation Matters.

Comments 9

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Jill Langhus
May 27
May 27

Hi Debbie,

Thanks for sharing your troubling post. I agree with you on all the points that you brought up. The system could definitely be improved. I haven't seen much sensitivity in my experiences with healthcare in the U.S., either. I'm really not sure why the word "care" is in the word, to be honest, but perhaps that's just my experiences. I know there are professionals out there who care. Do you know what happened to the poor girl that was raped, i.e., if she's okay and if they decided to keep her child? That's such a difficult case.

DebbieM
May 27
May 27

Hi Jill, one of my conflicts at the time was how do I proceed to inquire about her without exposing that nurse? What could I do to support them (mind you, this was a time that I was struggling with the diagnosis of my son with Down syndrome). I am going there to that community this weekend and I plan to ask the nurse about it and if possible see how they are doing and if there is anything I can do......

Jill Langhus
May 27
May 27

Hi there:-)

I see, but shouldn't she be reported if she violated the confidentiality code? To me the girl's rights are just as important as the nurses. Oh, I see. I didn't realize you were also facing challenges, and this was awhile ago:-( Please give us an update on how she's doing, and what you plan to do, if anything. I'm sure you did the best you could do at the time. It's too bad that it's still haunting you.

Lisbeth
May 27
May 27

Hi Debbie, How are you doing? And thanks very much for sharing this experience with us. I think you have said it all. Persons with disability (pwds) have all the rights to their sexuality like any other person. Its unfortunate that the pregnancy was as a result of rape, else I will have said love goes where love is and nobody can question that.
In Ghana I think we got an association of parents with children with disability and mostly our down syndrome family fall under this group. Its also under the disability movement. Just that the awareness about it is low. Which town are you from Debbie? Is it Koforidua? Pls let me know so we can link up.
Happy menstrual day in advance.

DebbieM
May 29
May 29

Hi Lizbeth, I am well and thank you for reading my post. I live and work in Accra, we are just implementing a project in the locality I referred to in my post. We can link up via email (maalaquo@gmail.com).

Hello, Debbie,

Thank you for sharing this heartbreaking scene. I'm a mother whose son has special needs, and learning more about his Global Developmental Delay led me to read a lot of articles on children with special needs. In short, I've grown to love them in general. So this story about rape to a woman with Down Syndrome is troubling. I hope she is ok.

For people with special needs and disabilities, their challenges are much more difficult. I hope we as a society can be more caring, accepting and empathetic to them.

Thank you for sharing your story.

Noela_Lum
Jun 02
Jun 02

Hello Debbie
I wish to appreciate your work and analysis. I am a teacher in an inclusive teaching hard of hearing and deaf students. Before I started working in that school, I regarded the those with special needs as second class citizens. As I worked there, I discovered that they are normal citizens like you and i. But are deprived from many activities because they can not hear. I concerted with a group of friends and we came up with an association called Our Voice Cameroon. Here, we mobilize these youths with hearing disabilities teach them the sign language, educate them on societal ills like violence, stigma , corruption etc. We equally organise empowerment sessions to teach these youths "handiwork" we hire and pay professionals to carry out trainings on hair dressing, carpentry, decor, cake making , knitting etc. We do this to reduce inequality amongst youths( with disabilities) in our locality. That's how we support people with disabilities in our locality.

Raquel Daniel
Jun 18
Jun 18

Thank you for sharing your story!

leila Kigha
Jun 26
Jun 26

hmmmmm
the things we witness at times, the mouth is heavy to say. thank you for sharing this condition which is unfortunately so true in most of our Africa nations. We hope as we raise our voices and take one step at a time, change is coming. courage my dear