Tag / disabilities

by Yumnah Jones

Nicolette Ripepi

Nicolette Ripepi, founder of Autism Connect

Nicolette Ripepi, the founder of Autism Connect, and a certified neuroscience and cognitive coach, specializing in autism-specific education, has been strongly advocating for children with autism since the early 2000s. She is a mother, a champion, and an advocate for voices that are often sidelined and overlooked in most societies around the world. Through her lived experience, she has encountered innumerable challenges but has continuously defied the odds. Her story shows us that resilience is the ability to pull through any hardship, and oftentimes, the changes we want to see in the world around us need to be trailblazed by the actions of our own hands.   

This is Nicolette’s story …

As the youngest of my family, I grew up in a household surrounded by love, support, and a sense of belonging, but when I was six years old, my father died of lung cancer, leaving my mother single-handedly struggling to raise six children, which included my intellectually challenged brother, Kevin. Watching my mother struggle has vividly informed my perspective that nothing in life comes easy, but that through faith in God and family togetherness, you can overcome any difficulty.

As a family, we grew closer during the emotionally challenging times, such as dealing with the grief of losing my father, taking turns to tend to Kevin, who was shunned by the schooling system as he was labelled “retarded,” and dealing with the socioeconomic challenges that automatically came with living during the Apartheid era. Life went on and we adjusted to our new normal. Through it all, I managed to graduate from secondary school and went straight into the workforce. It was here that I met my future husband, Jeremy. We fell in love and dated for a good four years before I fell pregnant with our first child. We got married that same year, filled with so many dreams and so much hope for our future together.

During our first year of marriage, after the birth of our daughter, Tammy, Jeremy was diagnosed with a hereditary condition, diabetes. Although it was hard, we managed with regular medical appointments, changes in diet, medication, and the daily adjustments that came with a diagnosis of such a nature. Four years after we had our daughter, I fell pregnant with our son, Tyler, and we were all over the moon, especially Jeremy. Being the rugby fanatic that he was, becoming a father to a son really excited him as he had all these dreams for his little boy, the way fathers do for their sons. But what was supposed to be an exciting time for everyone soon turned into heartache for us because the dreams we had had to die to give birth to God’s Plan for our lives.

In 2004, Tyler was born and the household was abuzz with excitement and life felt like it came full circle with our pigeon pair. Tyler, like our daughter, Tammy, was an adorable baby, filling our lives with so much love and warmth but as the days stretched into months and the months were heading into two years, I started noticing that Tyler wasn’t progressing as he should for his age. He would display frustration by biting his knuckles, banging his head against the walls, and didn’t respond to his name, or would stare long into space. Everyone around me said, “Ag, he’s a boy, boys take longer to develop” or “Don’t worry, he’ll be fine” and even the doctor had his own theories about what was wrong with Tyler but my maternal instinct knew something was amiss. I eventually went back to the doctor and pushed for a second opinion. Eventually, at 2 years and 10 months old, Tyler was diagnosed with Level 3 Non-Verbal Autism Spectrum Disorder which meant he required substantial daily support.

I felt relieved. Relieved that finally I had an answer, and could work with what we knew because not knowing is far worse than knowing. It did not make the road ahead any easier, but it gave me a place to begin. With this, I went to autism specialists, as help for autistic children in the early 2000s was not readily available to the general public. Either you had money to consult a specialist or you did not. Seeing these experts, however, was proving to be financially draining for our family, compounded by Jeremy’s trouble with accepting the diagnosis. It pained him deeply that he turned to substance abuse to cope with Tyler’s diagnosis. Meanwhile, I did not have the liberty of time to sit in my grief as I eventually became the sole breadwinner, took care of Tammy, Jeremy, and had to attend to Tyler.

It got to the point where crèches were not accepting Tyler due to his autism. Like my brother, Kevin, the same reality was now becoming Tyler’s. Shunned by the schooling system, I had to find a way and this was when an idea struck me. I asked Jeremy’s aunt to take care of Tyler while I still worked in the corporate sector. We bought a small table, housed it at my home and she babysat Tyler and two other autistic children. God bless her soul, she taught them shapes, and colours, and anything they could learn at foundational level because learning for an autistic child is very different from that of a child who does not view the world through an autistic lens.

With time I came to realise that if this was the reality of my situation, how many more families were out there struggling with a lack of support, from financial to moral, and just needed a space where they could be welcomed and have a sense of belonging in a world that often excludes children and families with autistic children. But by then, my marriage had reached breaking point and sadly ended in 2011. Although our marriage had ended, I continued to care for Jeremy while focusing my energy on being a champion for our son and children on the autism spectrum. Those difficult years strengthened my resolve to ensure that other families would not have to walk the same journey alone. With this, and Jeremy’s moral support, I formally established Autism Connect in 2013 and left the corporate sector to manage my organisation full-time.

Autism Connect was established in our hometown, Mitchell’s Plain, with the belief that no neurodivergent child should ever be left behind. What began as a deeply personal journey has grown into an organisation dedicated to providing specialised education, skills development, and support for autistic children, young adults, and their families. At Autism Connect, we recognise that every autistic individual is unique. Rather than expecting learners to fit into a conventional education system, we tailor our programmes to meet each learner’s individual needs, strengths, and interests. Through this learner-centred approach, we strive to foster independence, communication, confidence, and social development while creating an environment where every learner is valued and supported.

Our Early Learning Centre caters to children aged 3 to 16 through structured, individualised educational programmes. Using the internationally recognised TEACCH approach, each learner follows an Individualised Educational Development Plan that incorporates visual supports, sensory routines, and integrated speech and occupational therapy to maximise their developmental potential. Recognising that learning does not end in childhood, we expanded our services to include a Skills and Coaching Centre for young adults aged 18 to 25. The programme focuses on preparing learners for greater independence through life skills development, pre-employment preparation, physical development, and vocational training in areas such as information technology, hospitality, and woodworking.

Beyond education, Autism Connect is committed to building a community of inclusion, understanding, and belonging. We work closely with families, recognising that supporting an autistic individual also means supporting those who walk the journey alongside them. By partnering with parents, caregivers, therapists, educators, and the wider community, we continue to advocate for greater awareness and acceptance of autism. More than a decade after opening our doors, Autism Connect continues to remain true to its founding vision: unlocking the greatness within every learner by providing opportunities that empower autistic children and young adults to develop their abilities, realise their potential, and participate meaningfully in society.

Looking back at my journey, and seeing the impact of Autism Connect on our children and their families, I can say all the challenges and insights from my early years, to growing up with our older brother Kevin, to dealing with the hardships that came with my path, to eventually losing Kevin in 2014 and Jeremy in 2016, all these experiences have enabled me to build the support we now offer to other families.

I won’t lie by saying it is easy. It has never been easy, and it still is not easy. There are days I wish I could just have breathing space, just shut down, relax and unwind, but I can’t. There are many hurdles we face as an organisation with limited resources in light of the greater need for the type of work we do, but that was how I started this organisation. Jeremy and I did our research and started off with the little we knew, and had, but see how it has grown into what it is today. If you had asked me when I bought that table for those three autistic children sitting around it if it would prosper to this, it would have seemed unattainable. But it was through God’s Grace that we are all here today, as part of an inclusive community for autistic children, and it is my hope that going forward, it will continue to bring hope, support, grace, and compassion to families of autistic children in a society that often does not understand the joy that these pure hearts bring us.

If you are interested in learning more about Nicolette or would like to get in contact with her, please reach out via the website https://autismconnect.org.za/, her Facebook page, Autism Connect, or email her at director@autismconnect.org.za.

by Yumnah Jones

Oluwakemi Odusanya

Oluwakemi Odusanya, founder of Eagle’s Voice International for Disability Rights

Oluwakemi Odusanya, the founder of Eagle’s Voice International for Disability Rights is driven by her personal experience of living with a visual impairment. She is a disability-rights advocate, a freelance journalist, and holds a Master’s degree in Public and International Affairs. with aspirations to empower many blind women in Nigeria. Her story shows us that a disability can also be acquired and is not simply limited to birth, and that as human beings, we should always be cognizant of the fact that a disability can strike, anyone, at any given moment.

This is Oluwakemi’s story …

“This cannot happen to my child! We don’t have this disease in our lineage!”

My father’s words of anger, aggression and fear, was inflicted on my mother while she hid her pain beneath her beautiful smile, I was confused and wept myself to sleep every night. Little did I know that this was only the start of a new beginning.

Everything changed, in our lives, when at the age of 9 years, I tried to light a matchstick, to prepare dinner for our family. While I lit the matchstick, its particles entered my left eye causing me to feel dizzy and blurring my vision. My parents, thinking it was stress, tried to treat my situation with home remedies.

However, my vision only deteriorated with time, and four years later, my parents received the shocking diagnosis, that I have a retinal detachment in my right eye. My parents were initially shocked and in complete denial but being the eldest of four children and especially my father’s favourite, it was very painful for him to accept my condition but despite the emotional roller-coaster, my parents sought out professional treatment.

After several surgeries and a financial drain, I subsequently made the decision to discontinue with surgeries as there was no hope of recovery and I was tired of treating my eyes with surgical knives. I watched my life unravel, from what I knew it before and what it became after the incident. My self-esteem was at a very low point, my education came to a halt, my classmates deserted me and even my closest family members, my cousins, distanced themselves from me. It was very isolating while everyone pretended that everything would be alright.

At the failure of modern medicine, my parents took me to several herbal doctors, who made me bathe in the river, eat in the jungle, and drink concoctions, all in a bid to restore my sight but to no avail. A friend of my mother then advised her to enrol me in the Pacelli School For The Blind & Partially Sighted Children. It was at this respected school and rehabilitation centre, that I received the necessary skills training and education that facilitated my integration back into mainstream society. While my mother was supportive throughout my transition, it deeply bothered my father.

Wracked with guilt, he could not accept my blindness and would often have intense fights with my mother about it. He wanted my mother around me all the time, to shelter me, and would be mad if, for instance, she arrived home late from the market, as he told her she need to babysit me at all times. All these altercations lowered my confidence, and most times, I wanted to escape from the chaos at home but my mother forged ahead and ensured that I become independent.

After completion of secondary school, I enrolled for a degree in Mass Communication at the University of Lagos. During my studies, I realized that there were only a few women, with disabilities, in university and the reasons were because some could not use the computer independently while others were battling with accepting their disabilities. To prevent myself from becoming a frustrated and lonesome blind woman, I decided to participate in every available activity on campus.

During my second year, I developed a sensitization programme for the university’s campus radio, which aimed to change the mindset and perceptions on disabilities. As a result, my self-confidence increased and communication skills improved. However, the opportunity to join the National Youth Service Corps (NYSC) in Nigeria, after graduation, was a liberating experience.

The National Youth Service Corps (NYSC) is a one-year mandatory service for Nigerian graduates, not older than 30 years, where they are expected to work in a social organization, in line with their studies, but outside of their respective states. Being born and raised in Lagos State, I was posted to Zamfara State, in the Northern parts of Nigeria, a whole 24-hour bus ride from home. Now imagine a blind girl travelling solo, no parents or siblings to protect her or friends to guide her.

Being in the comforts of my home and familiar surroundings, my whole life, this opportunity to explore came at such a great time where I was learning more about my own capabilities. The solo experience strengthened my mobility skills, gave me the confidence to travel alone, and helped me to improve my communication skills and self-resilience. I realized every girl and woman, with a disability, should be given the opportunity, to travel, to discover herself. After three weeks on campground in Zamfara State, I was redeployed to Lagos State for better accessibility and to begin my primary place of assignment at a radio station.

My path from a sighted young girl to a woman, with a visual impairment, which was shaped and inspired by my mother’s unrelenting support and unconditional love, motivated me to want to create a space of change for young women, such as myself, who were not given the opportunities I was given. In 2022, Eagle’s Voice International for Disability Rights was established to equip blind women in Nigeria with basic 21st century skills, to enable them to be self-resilient and to attain leadership roles in media, politics and corporate society. Our vision is to see blind women as active drivers in the Nigerian economy and a Nigerian society that both respects and values visually-impaired women as contributing citizens.

Eagle’s Voice International for Disability Rights, since it inception, participated in many projects and activities. In 2023, we partnered with the Nigeria Association of the Blind, to provide 2-month training to empower ten blind and partially sighted women, in the Lagos metropolis, with computer orientation, community awareness and mobility skills. We also collaborated with non-governmental organizations (NGOs), in Lagos, to organize workshops and seminars, that equipped blind women with essential skills in communication, critical thinking and technical proficiency.

Currently, we are upscaling the leadership skills training project with support of the pollination project, at the University of Lagos, by training twenty blind and partially sighted women, including men, with skills in computer proficiency, communication and emotional intelligence, and orientation and mobility. The training commenced in January 2024 and will conclude in April 2024. The projects and activities have expanded our knowledge and made us aware of a much greater need and capacity to train more women with visual impairments and to demystify the negative perception of people with disabilities.

Although impact can never be measured, many participants have been greatly impacted by our projects and activities, inspiring them in becoming more confident and daring in their aspirations and maximization of their potential. Sensing and watching them bloom is always such a pleasure for everyone involved and we want more of this impact to the extent that we see more people with disabilities in the ministerial sphere of society, where no blind and visually impaired person has ever ventured within Nigerian society. More people with disabilities at the top-tier of society consequently means more impact and positive change for their fellow beings at grassroot level. With this in mind, every action and thought of Eagle’s Voice International for Disability Right is governed by this purpose.

When reflecting on my growth and development and thinking on the different, yet well-meaning, parenting styles of both my parents, I am immensely grateful that even if my father did not initially agree with my mother’s decisions, that she stood her ground in exposing me to the outside world. Any parent want to protect their children but to shelter a child with disabilities will not benefit any such child in the long run. It is best to emphasize on their developments, yet at the same time, to be respectful of their limitations, in helping them navigate their surroundings. Being assertive in their growth is not the same as tough love, because tough love without respect is damaging to their growth.

Thus, the same analogy can be used in dealing with and including people with disabilities in society. To possess disabilities does not automatically equate someone to being incompetent or incapable. The best gift a parent, an organization or society can offer them is to expose children and people with disabilities to educational advancement, skills-training and empowerment projects that will facilitate their integration into and contribution towards mainstream society. 

If you are interested in learning more about Oluwakemi or would like to get in contact with her, please reach out via her website eaglesvoice.org, her Facebook page, Eaglesvoice_ng, or email her at kemiodusanya1@gmail.com.