Back in 2018, my mother gave me ten thousand shillings and sent me to the Nakuru Huduma centre. There I stood in line (or sat in my case) for three hours, waiting to register Strong Spine as a foundation. “If you are going to do this, then do it for real!” mother said. I had resisted the idea of having a foundation for a long time, for reasons that don’t make sense at all. First, I didn’t believe that going through a life-altering experience automatically gave you the right to have commentary about that experience. For instance, it didn’t sit right with me when people who had teeth cavities opened up Facebook pages and spoke out about the pain of having cavities.
Maybe I was just not ready to own my story and other people owning theirs felt uncomfortable to me. Now I realize that no one, not even yourself, has the right to tell you how you should live out, react to or express your story. When I got over myself, I was ready to invest my energies into something that I was passionate about; Disability rights, awareness and empowerment. Strong Spine was the vehicle through which I was going to achieve said goals.
It took four years for the government of Kenya to vet, investigate and certify Strong Spine as a known foundation in our country. I am not sure why the registration process takes that long but I wouldn’t expect anything less from bureaucracy in our beautiful country.
As we waited for the certificate, we built a house in Njoro for an orphan paralyzed at birth by Polio, donated more than ten wheelchairs around Nakuru, crowd-funded the first adult diaper initiative in 2019, shut off operations during Covid, only to be resuscitated by good fortune when Safaricom gave us a generous donation of half a million shillings to donate adult diapers.
I wrote a carefully worded proposal to Safaricom Sponsorship explaining what Strong Spine was all about, what we stood for and what our vision was. It was in the back end of 2019 when I got the courage to speak out about the struggles that people who experience incontinence (the inability to control your bladder or bowel) go through. A good percentage of disabled people have incontinence issues, it might be as a result of an affliction they are struggling with, age or immobility.
Safaricom made the pledge and all I needed to do is plan the handover ceremony. My first instinct was to have the event at Nakuru Special School, and I followed that instinct. It is a school for children with mental and intellectual disabilities, has over 200 students most of whom experience disabilities such as cerebral palsy, autism, spinal Bifida etc. Some of these children are on diapers 24/7 and it’s hard to imagine how much the school spends on procuring diapers for them. I decided to give the biggest percentage to them. In addition to the children at the school, I invited 30 of my disabled friends to also participate and benefit from the donation.
There was Tabitha, a teenage girl I had been introduced to just days before the event. Someone sent me a poster inviting me to a fundraising event to buy her adult diapers. I understood what the family must’ve been going through so I requested that she too, would come and be a beneficiary. Tabitha is Albino, non-verbal and experiences a condition that affects her limbs in a way that she cannot move. Rejected by her family, she relies on well-wishers to clothe, feed and put a roof over her head. She doesn’t even have a wheelchair. That is Strong Spine’s next project. To get Tabitha a good wheelchair.
Wanjohi is a 50yr old man who almost drove me to tears one day as we were talking on call. “You are still a young man!” he said, “ there is nothing as emasculating as not being able to provide for your family and worse still, to struggle to even buy diapers for yourself.” Wanjohi fell at the construction site where he worked and broke his back, suffering a spinal cord injury. With two children in university and one in secondary, every coin he gets from his chicken farm is divided to attempt to meet all these responsibilities. “It is a tough task that overwhelms me, I don’t even want to go into what my wife has had to endure”. Wanjohi too was a beneficiary of the diaper initiative. He got diapers that will last him over three months. He described the donation as a precious gift he had never received from anyone else before.
Then there was Keziah, a soft speaking, fair-skinned, turban-wearing Keziah. An incredible woman living an incredible life. “My dream is to have a children’s home one day. I will call it Keziah Children’s Home for Special Kids” she said to me when we spoke. Keziah has four children, three of whom are disabled. Her three sons have severe cerebral palsy, can’t communicate, have to be restrained when they sit and are also in diapers the entire day. She is without a job because how could she get a job when she has the responsibility of taking care of her children?
“Now I have four disabled children actually”, she adds. A child from her village was rejected and neglected by their family and so she took him under her wing and roof. She now treats him as one of her own. Keziah was the biggest individual beneficiary of the diaper project.
I too was there, and I too use adult diapers. There was a time when I couldn’t get myself to say it out loud because I was ashamed of people knowing that part of my life. I thought using diapers demeaned me but as I continue to grow, I understand that not being able to afford or access adult diapers is the true definition of being demeaned. What we did with the diaper initiative was offer temporary relief but a long-lasting solution includes the government stepping in and moderating the prices of these assistive devices and making them more accessible to all people.
Strong Spine is a purpose-driven platform that is very particular about the empowerment of disabled people. I foresee a future and society that doesn’t cast people away or discriminate against them because they have a disability. I imagine a time when my community will feel comfortable in their own skin and be courageous enough to pursue their dreams. Ultimately, Strong Spine will morph into a physical centre of wellness and physiotherapy. My dream is to have an institution where disabled people will be free to meet, share experiences, learn new skills and above everything, to understand that anything is possible. All dreams are within reach despite their challenges.
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