My recent cause – mothers of children with cerebral palsy

Dear family and friends,

I’ve finally decided to give this a try! I would love to share about my recent experience with you and ask you for a small favour which will have an immense positive impact. As some of you might already know, this spring I ventured out and travelled to the capital city of Ghana, Accra. Here I stayed for three months doing a fieldwork research for my Master thesis. This was entirely my own initiative; I travelled and lived there at my own expenses, searching for the local contacts and paying regular visits to the participants of my research.

The chosen topic was very close to my heart – cerebral palsy of children. This disorder happens due to damage to a child’s brain during pregnancy, at delivery or up to 1 year after birth. The care needs of such children might be very complex, which result from combination of intellectual, physical, sensory impairments and/or epilepsy. My personal experience helping with taking care of my sister with CP has learnt me that while this diagnosis is persistent, the disorder of movement and posture can indeed change with a good and early intervention. This entails physiotherapy, efficient exercises which might help the child to learn how to sit, crawl, stand or walk.

Now as you can imagine, not all parents have their own resources to afford adequate professional help for their children. Or….to purchase assistive devices to help them with daily - physically challenging activities - which occur when taking care of such a child. In most of Global North countries, such parents are entitled to receive government support, such as the reimbursement of costs for hiring formal carers or assistants, the purchase and maintenance of assistive devices or motor vehicles. However, as I found out in Ghana, the mothers of children with CP can hardly rely on sufficient state support and many times face major stigmatization, which stems from general lack of awareness about CP. Also, with an urgent deficit of affordable and good quality rehabilitation centres in Ghana, some families try their best to carry out basic exercises with their child at home. Nevertheless, this might not always be possible for families who cannot commit their deficient time and finances to such a task, leaving the child’s development neglected.

During my stay in Accra, I was lucky enough to get in touch with a local NGO, which do their best to provide complex support (educational, financial, social,…) for the parents of these children: Sharecare Ghana. This organisation provides two days a week a free of charge physiotherapy centre. It can be described as a tiny room with assistive devices (special chairs, standing frames, etc.) put together by the workers and parents (this is also called appropriate paper-based technology or APT) with usually two physiotherapists (currently working for free), a few social workers and volunteers. Here, mothers (also fathers or grandparents) carry their children for a physiotherapy session.

Thanks to my regular contact with the representatives of this organization, I learnt about the initial motivation for its founding, its day-to-day running and every day challenges, the sources of its financing, which are mostly very unstable and irregular. At one extra-ordinary event of receiving a financial gift from a private donor, I witnessed the workers’ reliable approach of ensuring the money was distributed fairly and directed towards the most searing cause.

This organisation was of immense help in negotiating the access to participants for my research. I got in touch with 16 mothers who I frequently visited at their home or met them at the physio center. I conducted extensive interviews, in which mothers not only answered the formal questions of my research, but also initiated informal conversations, thus helping me to get to know them better. Day by day I became more aware of the local conditions and the specifics of their unique culture, I learnt about the complex context of the environment they've lived in.

I got to know mothers who had been abandoned by their husbands soon after giving birth to their child (born with CP) without any financial support left behind for the entire family. Mothers who simply cannot afford to travel to the closest hospital with their child (in an environment that lacks disability-friendly architecture and public transport) when she or he gets sick. Many of them opt for self-diagnosis and self-medication, which means they follow their instincts or consult only pharmacist, often obviating the hospital visit where they sometimes encounter health workers who are not even properly trained to handle a child with CP.

Mothers who keep struggling with inexorable negative attitudes of the society that stem from traditional superstitions. More specifically, some people might still believe that mothers who give birth to a person with disability have actually been cursed or punished by supreme power. Even more specifically, one mother I personally know (and can confidently claim her example represents the struggling situation of many more) was left behind by her husband and her relatives. Working as a street vendor, she used to carry her son with CP in a typical back cloth (hardly any strollers or even safe sidewalks in Ghana) during her work. However, once people noticed the unusual posture of the child or his excessive drooling, they refused to purchase anything from the woman. So if she wanted to earn at least something to feed her child at the end of the day, she had no other choice but to leave her son at home alone while she was outside. Later on, thanks to finding necessary contacts through becoming a member of the mentioned NGO, she managed to find a way out, luckily.

Yes, you’ve guessed correctly – these children are hardly ever accepted by the local schools or institutions and there is simply no carer’s allowance provided by the government. I was naturally caught off-guard many times. As I was only a researcher, I had to stay hands-off for the entire process, which meant I couldn’t contribute financially, despite seeing that an urgent help is needed all around me.

It is then from these feelings of urgency and immense gratitude to the people who represent Sharecare and the mothers who provided their time and shared with me their stories of resilience that I am seeking ways of helping. Since I do not belong to any NGO (at least no yet) and have just finished the college, I cannot do this alone. Therefore, I’m using this venue to ask people across social media to contribute with their little bit – any amount no matter how small will be appreciated. The collected sum will be sent to the executive director of the organization in question. Depending on the final amount collected, the specific use of the money will be discussed with her – greatly depending on where the current urgency lies (most likely medication and travel fares for the families to bring their child for the physiotherapy). I will make sure you will be continuously informed about each step of this procedure.

Please let me know in case of any questions.

Thank you.

NOTE:

Despite the fundraising/charity character of this campaign, it is my utmost effort not to portray these women and their life stories as solely pitiable. Indeed, their narratives and conditions shook with me to the very core, but the main characters – mothers, women- were very reluctant to be looked at as either VICTIMS or – if taking the other extreme - HEROINES. Repeatedly I was told they had adjusted to their reality doing their best for their child they could afford – as any mother would. Their disarmingly strong faith, resilience and – in some cases – active engagement in the organisation have helped them remain thankful for personal growth, for any subtle progress their child gradually makes, for understanding and living the phrase UNCONDITIONAL LOVE regardless of the social attitudes, superficial measurements of success/failure and daily difficulties which life with such a child in their environment inevitably brings.

Therefore I’m not looking for a help with a face of disempowering PITY. I wish this could be taken as an opportunity. Opportunity to let these people (with almost no social protection) on the other side of the world know that there are friends out there who would like to convey this message by their little contribution: Yes, I’m here and I support you in your own active fight for a better future.