Jumping hurdles, falling down, getting back up


I am part of a group called the Special Mothers Project. It's a support group for parents who have children with cerebral palsy. The name stems from the fact that it started out as only mothers, but gradually the fathers have also come on board. We have a whatsapp group where we have a total of 67 parents that have children with cerebral palsy, we keep increasing in number.

Gathering from my experience and the experiences of other parents on this group that I have met and spoken with, these are some of the many challenges that parents of children with cerebral palsy face:
Some special mothers at TV3 Station presenting a petition to goverment to pay more attention to children with cerebral palsy and their families


Stigma STIgma STIGMA (community and church)
I recently shared a story on my facebook wall about a lady who has 4 children with special needs who is struggling financially and emotionally. Her community have decided to ostracise her, called her a witch and believe she is cursed. Another story is of one of the mothers being called by her pastor to stand in front of the church to apolgise to the congregation for bringing such a child to the world and it is surely because she has sinned. My biggest issue is with the church when it comes to stigma and disability. The church plays a huge role in Ghana which we intend to downplay a lot. Imagine being called in front of a church congregation to apologise for your sins? Why wouldn't there be so much stigma in a community if your own pastor says giving birth to a child with cerebral palsy is sinful? Unfortunately churches like this are a discredit to christianity, and instead of finding a solution or bringing people at peace and to acceptance, they end up breaking up homes and families. Up till now there is no regulatory body that I know of, for churches springing up in Ghana. The orthodox churches I believe have a regulatory body, but how about the other stand alone churches? Every day, there is a new church cropping up somewhere in Accra and the street pastors at the bus stops are becoming a popular trend.Who is monitoring these people?

Even the media are so misinformed. A media professional called Giovanni a patient once, because she felt kids with cerebral palsy are sick children.

Fraud/Corruption/Whatever you want to call it
Many individuals and even NGOs are duping persons living with disability. Some NGOs use the stories of the mothers to raise funds and then never get back to the mothers. It's a really sad scenario of robbing the poor and vulnerable.  I visited the northern part of Ghana the other month where an NGO has decided to raise public awareness on the 3% allocation to persons with disability of the District Assembly Common Fund. Findings were that in certain districts in the Upper East region, monies being disbursed were not going to persons with disabilties but regular people. Also the public had no access to the accounts of the 3% and how it had been spent. The 3% is apparently in a separate account and there is a committee that has been set up in each district to handle the disbursement of the money. Unfortunately, persons with disability were not benefiting from the fund and also the money was being used for other things. I ask myself how do you exploit someone who is already vulnerable and poor? We indeed live in selfish times.


Medical Negligence
I have met a great number of health professionals that have been helpful and knowledgeable in the field of cerebral palsy and neurological disorders. I have also met a few who are not well informed and do not do their job well. 
I have learned quite a bit from the other mothers and I have also come to understand how their children were diagnosed with cerebral palsy. Many of the kids I have met in the support group developed cerebral palsy through jaundice. What causes jaundice and why do we wait for it to get worse before being treated quickly? Almost every mother I've spoken to believe that the cause of the cerebral palsy was due to medical negligence.

In addition to that, healthcare professionals do a disservice to the poor by prescribing medications they can't even afford. A gentleman sent a list of medications prescribed by a doctor totaling 200 cedis (medications he would have to buy every month for his daughter) meanwhile he is unemployed. Yes it is your job, and you may have no choice but we know some of these things aren't sustaible. What's more is that he wasn't briefed about each medication and the side effects. Medications for children with cerebral palsy and epilepsy are usually life long medications and once you get on them, you must be assured of a constant supply. I remember I made a huge mistake once when Giovanni was put on vigabatrin after seeing one doctor in France (who was so horrible to us), when the medication was running out I emailed her to issue another prescription so I could get someone to buy it in France and she did not reply my emails until I told her that Giovanni had been admitted, even with that, her reply was so infuriating. If I see that lady ever in my life I swear I will throw my car keys or shoe at her. I reported her to the hospital authorities for her misconduct, I doubt she was ever dealt with. Basically we found ourselves in a dillema due to lack of this medication in Ghana and we strategically and quickly weaned Giovanni off it. It wasn't easy at all. 


What can be done? 
Healthcare professionals should try and inform parents from the word go about the diagnosis on their children. If severe developmental delay, cerebral palsy can be diagnosed very early, however many mothers have complianed that doctors did not tell them their child's diagnosis. This forced them to run helter skelter to other places to find solutions (herbal, prayer camps, etc.). If they had been informed early and educated on the diagnosis they wouldn't have considered alternatives. Most of the stories I've heard anyway from mothers are due to medical negligence. Most CP cases in Ghana are caused during or after delivery why is this? Giovanni however was during pregnancy because I was ill and had an operation.   

The media have to be trained on the best way of reporting articles regarding disability. The media has so much influence yet very little training on how to address issues in the health sector especially regarding disability. They lack the vocabulary, they lack the information and sometimes empathy to understand and write good articles on disability. The media indeed is very influencial and informative and so traning them is of high improtance. Workshops can be run to equip them better and encourage them to work more on stories on disability. Portia Garbor, a journalist on the Ghana TV station TV3 is one good exmple of a journalist who has a strong passion in taking up stories of less privileged and more vulnerable groups of people and I admire her for all the work she puts in.

Government needs to find a way to compensate parents who have no choice but to stay at home and look after their children. Government needs to find a scheme in order to pay off parents turned carers. It is a job afterall.  Many countires are currently doing this and I believe it's in Ghana's best interest to develop a programme like this.The government of Ghana has recently put parents of children with cerebral palsy on the LEAP programme, but that money is peanuts and can't even cater towards the needs of a family with special needs. Parents of children with special needs do not become unemployed because they want to, they simply have no choice. For me, I have a lot of help at home and so I'm thankful to be working, I considered giving up my job at a certain point but my family has been very supportive that I haven't had to do that just yet. But not everyone has it this way. Being a carer IS A JOB and it would be great to be paid for it. 

We tend to downplay how influential the church and other religious bodies are in our country. Religious leaders need to also play a big role in advocacy and raising awareness to reduce the stigma families of persons with disability face. One such church called a couple who had given birth to a child with cerebral palsy infront of the church and disgraced them blaming them that they had sinned and that is why they have given birth to an "abnormal" child. Yes, this is happening right here in Ghana and I'm afraid we allow it. Church members were sitting right there when this happened why didn't they intervene? We need to stop acting like church mice and condemn what we see as wrong. We are quick as a nation to condemn homosexuality but when pastors take advantage or stigmatise families of children with disability, we sit down, watch and say nothing; we suddenly become like the statues in Medusa's castle. I find this behaviour so hyprocritical. My parents raised me to always question norms because norms were established by human beings and norms do not mean something is right. 
Special mothers meeting last September at Mmofra Place - sharing experiences


As for those trying to dupe us, we have become watchdogs. And we try and educate other families on how to watch out for fraudulent individuals and organisations. 

The hurdles are visible, and we are jumping over them one at a time. I try to jump over some of mine through this blog by raising awareness on children with special needs. 

If you would like to read more about special mothers project you can find them on facebook and they also have a blog: specialmothersproject.blogspot.fr .

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