Oftentimes when we speak about our aspirations for the future, we rarely include people living with disabilities. Think about the partner of your dreams or the child you’d like to give birth to; typically our vision is always of an able-bodied individual.
If we’re all about inclusion and believe in a society where everyone belongs; why are we not starting within ourselves?
As we observe International Day of Persons with Disabilities, Dimakatso Mokwena lets us into his experience of being a father to Keitumetsi, his daughter who is living with Hydrocephalus – an over-accumulation of fluid in the brain.
Today, we celebrate the unconditional love of a single father for his special needs daughter. Mokwena talks to us about the challenges he encountered from the moment he first found out about Keitumetsi’s disability, and how he strives to show the utmost love to her.
Mokwena held nothing back, and we hope you will be as moved as we were by our conversation …
Q. Tell us about the disability that your daughter is living with?
My daughter was diagnosed with hydrocephalus. In its simplest definition, hydrocephalus means over-accumulation of fluid in the brain. My daughter’s condition happened at birth because the nurses at the hospital who were helping the mother of my child with delivery were negligent.
This has now become a litigation issue against the Department of Health to get justice for my daughter because our gynaecologist did not foresee this condition during pregnancy. I was there at the monthly gynae appointments. When I recently got in touch with him to request medical files for my lawyers, he was shocked to hear what I had to say about my daughter’s situation.
Sometime last year, lawyers who assist parents in my situation pro-bono, got in touch with the mother of my child and me, offering their services so my daughter can get justice for what happened to her during her arrival into this world.
Q. How did you find out about her condition and how did you react?
A few hours after my daughter was born, I realised her eyes had a downwards gaze, which is a symptom of hydrocephalus. Although I was concerned back then, I did not read too much into it because I did not know what it meant. But the nurses who helped with her delivery should have been able to diagnose my daughter after delivery. Two months after my daughter was born, her head started growing big and we did not know what was wrong. In a chance encounter, my daughter had the flu and we took her to a GP for a consultation. Upon arrival, the GP asked whether my daughter has had a VP shunt operation done as yet and if her neurosurgeon is happy with her progress. That was February 2011, my daughter was only four months old.
That was when I started truly learning the world is cruel towards people living with disabilities. They are treated like aliens who do not belong here as if they’re an inconvenience to society because able-bodied people generally do not want to share space with those who are different from them.
Q. Talk to us about the support you received from your friends and family?
I honestly do not know where I would be right now if my sister, Anna Mokwena, was not there for me. The mother of my child and I separated when my daughter was only 1. My sister stepped in to assist me greatly whenever I would go fetch my daughter to spend school holidays with her paternal side of the family. This year my daughter moved in to live with me on a full-time basis. We live in Pretoria where she is attending school for children of her condition. My nieces and nephews also step in to assist when needed.
My two best friends, Mahlane Selane and Nare Kekana have also been amazing with their support, especially this year when my daughter came to live with me. It does take a village to raise a child.
Q. What kind of effect has your daughter’s disability had on your relationships?
Yhoo man, wow! Where do I begin? This needs me to write a whole memoir. But to answer your question, I have lost romantic relationships because I could not be in a space where I felt issues relating to my daughter’s health and medical needs were a burden. In all honesty, I do not blame the people I have dated for feeling overwhelmed because my daughter is a part of my life and whatever she is experiencing, will spill into my personal life. The situation has not been easy on my romantic relationships, so much so that in 2016, I was diagnosed with major depression, and to this day, I am still on anti-depressants.
Even the parenting relationship with the mother of my child has not been easy. Quite frankly, it’s been a thorny situation, as I sought to assert my rights to have access to my daughter in a way that is in line with the law. We have both since worked on our co-parenting relationship. We had to put in the difficult yet necessary work, to ensure that Keitumetse Mmone Mathomo Mokwena does not suffer, because she did not decide to be in this world.
Already she is disadvantaged in so many ways given the fact that she is a child of different abilities, so we needed to ensure she does not have her parents adding to the difficulties.
Q. What is the general attitude of people when they meet your daughter?
Some people as we walk in the mall, or in the estate that we stay in, turn around and stare, some find themselves drawn to her because of her beauty, intelligence, and outspoken ways. People randomly give her money when I post about her birthday on social media. A fellow runner by the name of Ian Seema Tshepe, when the academic year started in February 2022, offered to pay her school fees for the whole of 2022 at the school she attends.
There have been quite a few random acts of kindness over the past 11 years of my daughter’s life where people reached out to me and offered to assist my daughter in ways they felt they could and I remain eternally grateful because raising a differently-abled child is quite strenuous on one’s finances. Also, I remember about four instances where I have had to take various malls management to task for not having enough disability parking bays in their malls and I would deliberately park my car next to the mall entrance where it would be convenient for me to assemble and disassemble my daughter’s wheelchair and easily access shops and restaurants.
They would set their security guards on my daughter and me, almost like setting henchmen to go after persona non grata. They would be shocked when I put up a fight, and I would immediately demand that I engage with mall management.
In two of the four instances, mall management apologised by buying us lunch in one of their restaurants in the mall. But I do not need anyone to buy lunch, I just want my daughter and me to enjoy our shopping and restaurant activities like all shoppers. Being bought lunch after such an assault on one’s human rights does not begin to undo the injustice experienced. I learned early on that my daughter would face issues of belonging and it is my responsibility to fight for her space in this world and ensure that her rights are upheld, even if it means at times I have to act out of character to ensure such is done. Hell will freeze over before I fold my arms and watch my daughter unfairly treated.
Q. What are some of the challenges you had to deal with in the early years of your daughter’s life, and how did you deal with them?
My immediate challenge was coming to terms with the fact that my daughter may never know the joy of walking and freely going wherever she wants to go without needing anyone to accompany her. Each time peers told me about the progress of their children’s mobility as is normal to do so, it felt like they were saying to me, “Dimakatso, your daughter is not walking, mine is already walking and breaking stuff in the house – stuff your daughter can never do”.
I needed counselling. Although the counselling did not take away the reality, it in a way helped me accept my reality. Back in 2013, I was advised to buy a wheelchair for my daughter and I refused outright because I was like, “how dare you, as a physiotherapist, suggest that my daughter will not walk and needs a wheelchair for mobility”. It has been quite a journey and a half, a journey I wish no one ever has to undertake.
Q. What are some of your current challenges?
I am facing financial challenges. Although I recently paved my yard and increased the lounge room in my house so my daughter’s mobility is unhampered, I realise that my house is just simply not spacious enough to accommodate my daughter’s mobility needs. In the next five years or so, I am going to need to buy a bigger house so my daughter can enjoy the freedom of movement when she is home.
In March, I bought a slightly bigger car and although my new car is slightly bigger, when I drove my daughter to her mother’s place in Hazyview for the December school holidays, I realised just how extremely small my car is because the various components of her wheelchair could not fit in the car boot and my friend, Nare, whom I was driving with, had to carry some of my daughter’s luggage in the car to ensure my daughter was comfortable throughout the entire trip.
Q. How is the department of health-supporting you? And are there medical aid plans to assist you in taking care of your daughter?
In my case, as much as I have all these challenges when it comes to raising my daughter, mind you I’m classified as middle class, people who are dependent on the public health care system face an even bigger conundrum. The public health care system is in shambles and leaves a lot to be desired. Other parents who raise children of my daughter’s condition have been in touch with me to share their experiences – some are dependent upon the public health care system and there is no good story to tell. I am not even bothering to seek assistance from them.
Medical aids are only designed to take care of able-bodied people who never get sick. The minute you are sick, have physical disabilities, medical aids treat you like you are a burden to them and that you should not be making claims. Back in 2011, my daughter needed an R90 000.00 VP shunt procedure which the Medical aid refused to pay for.
When they refused to cough up the money, I put up one of the biggest fights of my daughter’s life yet, so much so that the medical aid company reported me to the CEO of the organisation I was working for at the time. I came out guns blazing and after a monumental battle, they finally paid for the procedure.
Q. What would say to South Africans who are ashamed of raising children living with disabilities?
I would say to them, take your children out there, if it means travelling to town using taxis, buses, trains or whatever mode of transport with them, do it! I feel we need to burst the bubble that South Africa is an inclusive country because it is not. People need to be made uncomfortable until they become comfortable with sharing spaces and resources with people of different abilities, and that includes the government, the private sector, and the public and private healthcare systems.
Why are we not seeing people who are living with disabilities on magazine covers? Why are we not seeing them represented in the so-called democratic Parliament? I am yet to see a magistrate or a judge or a Justice of the Constitutional Court as a person who is differently-abled.
We have all convinced ourselves of the lie that South Africa has done a lot to accommodate the needs of disabled people. I have heard horror stories of how employers employ people with physical disabilities just to tick boxes but these differently-abled people are not given resources to make meaningful contributions to the success of the organisations they work for. This is an indictment on all of us. History is going to judge us harshly for allowing this to happen under our watch.
They usually say don’t praise a fish for swimming, but in this case, Dimakatso deserves all the applause. Salute to Dimakatso for standing up for his daughter and fighting for justice which many will benefit from.
Dimakatso has lived a life of testimony proving that children with disabilities have a place in society, and most importantly, in our homes. May we not continue to live in hope of an inclusive South Africa, but actively be up in the arms of a united-real rainbow nation!