We are all plagued by the experiences we go through; it shapes our minds and our hopes. If you have ever wondered what the trials of a person living with a disability are, then you might be able to relate to the kind of questions I have had to ask all my life. How do they carry on, flawlessly or do you see the struggles?. When you think of how one settles in with differing dynamics of families, how about those families where they were in no way prepared for what comes daily, you think of these realities, and you think; at what point do we all find balance with so many things?

Can you picture a system that serves some population of people with disabilities and with another bad legislation abuses them. The society’s awareness or lack thereof at times, unimplemented policies on education, welfare, accessibility to networks, transport, you name it, and you start to ask a lot more questions like are they even considered as bonafide members of the society? Despite all these, people with disabilities are constantly dealing with their plight daily, in ways that we could never imagine, doing so consciously with society paying very little attention that we might hardly even notice.

Another set of people I often wonder about are the siblings in the lives of people with a disability, neurotypical siblings more often when it comes to intellectual disability, how they cope. As a caregiver to my sibling, I am aware of the challenges these sets of people face, however, to have accepted their reality was not easy at all.

Ever since she was born, she has been the best decent human being I know on earth. No judgments, fully trusting, full of love and laughter, never questioning the decisions other people make for her or their probings. The pity looks when you say the word autism or disability, her slurred speech, all the negativity that had been directed at her, stigmatized by no fault of hers and still no judgments, total acceptance.

For a sibling of a person living with a disability, life is sometimes very marginalized on even the simplest things. They are often relegated to the back in the family dynamic, almost like they are there but not seen, the biggest ally to the child with the disability and an extensive asset to their parent but often never utilized. I remember wanting a sister, asking for one, and I got my sister Bubu.

Born in the early 90s, she came with all the excitement like a present much awaited for, the baby of the house, I had asked my mum severally when she would be born, longing and tired of sharing my space with my brothers and male cousins, my grandma had said that girls were so rare like gold and they only came to those who were so deserving, so they celebrated the birth of girls longer with much merriment unlike in other communities. It was easy to believe her, she birthed ten boys, and technically I was her first daughter and granddaughter. She dotted on me like a princess but I was ok with sharing my castle so I prayed that we were deserving of another girl child. 

Bubu came a few months shy of my 9th birthday, arriving early, too early we were told, six months plus to be exact, it was the first time I would hear the word ‘premature baby’, there was a complication, my mum had high blood pressure, it was not ideal, she had been born. We did not know what all the fuss was about but we celebrated nonetheless. She had to be held gently, gently caressed, gently everything. This was a couple of weeks of being home after she’d stayed in the hospital on observation for several checks, the doctor’s conclusion, she was doing great, she could come home, women had premature babies all the time.

Before she turned a year old, she could grasp some words, said ‘mama’, could walk, played with me. I did not notice anything other than how chubby and gorgeous she looked, then the seizures started. Where we come from the term I heard was ‘convulsion’, I did not know what it entailed or meant for a long time, I knew that she would be ok one minute, and the next this electric-like effect would strike her, and she would lose her footing, shake uncontrollably and almost within minutes with my mum or dad running to the rescue she would be ok again. She went through Teregol and Valum injections like they were peppermints,  and she would hardly cry as I would at the mere sight of a needle, the seldom forgotten sting of its pressure never leaving my mind, yet she took it wholeheartedly.

Her seizures lasted on and off for almost two years, and with it came the realization that she had lost her speech, she would recline more to herself, staying quiet, avoiding eye contact, attached like a magnet to our mother but at odd times laugh hysterically, often you would find her with a big smile, and she always gave the best hugs. I worried about her, asked questions, so many questions, some I got answers to, some I am just getting now twenty plus years later, and some I am now answering for others.

I had learned to speak for her, I would say; we want this, we need that, ‘we’ was the way I dealt with her losing words, speaking for two. I can not remember a time ever whether my parents explained what was happening to my siblings and me, but I knew there was this uneasiness from others about her when they’d visit our house. My parents never regarded her in a special way that excluded her from being like everyone else so we didn’t, she would join us in chores, playtime, errands, mostly shadowing me as her big sister and mimicking my actions or one of the boys, she was never criticized at home which we made sure anyone stepping into our home saw that we saw her as a wholesome person without the need of their pity.

For a sibling, the relationship dynamic is very different, especially with a sibling with a disability. You cannot extend the emotions of fault, regret, cause, need for a cure that most parents exhibit time and again, you are transitioning through your own life with this sibling often battling with two issues “pause” or “flight”. To pause and take your sibling along with you or to zoom forward to your greatness and then circle back around to bring them to where you are.

You become empathically conscious very early whether you are older or younger, you automatically assume a mini parent and seniority personnel over that sibling. The gender of the sibling determines the role of stronger attachment in the home; a male sibling will deal better with another male sibling and vice versa, its a thing of preparedness, they have either been where they are going and can direct them more smoothly or hope they steadily reach where they would with their help regardless, oftentimes more practically and less emotionally than a parent. Siblings would most times present their sibling as an independent individual that can do all things before a typical parent would.

Attending a boarding school was great but worrisome for me growing up, I spent a lot of my time worried I was missing out on her life, there were no support groups or anyone aside from my siblings who I saw handling the same issues, it brought us closer but closer without solutions. In the 90s and probably to this day most solution seems to be lodged at the hem of traveling outside the country because of all the roadblocks parents face to getting answers on disabilities. There were no mobile phones then, so when I was opportune to call via landline at the school headmistress’s office, I’d make sure I spoke to her first before my parents just to get a “fine” in response to my insistent “how are you questions”. She had started gaining words back at about six years old but in single terms. “I’d like to have a cup of tea” was simply ‘Tea”, same with ‘Water’, fine, and Go. She couldn’t say her full names but responded to them when she could say “Bubu” that’s the nickname for her native name ‘Onyebuchi’, we all settled for “Bubu”.

She had a hard time at school, our parents enrolled her like everyone else in the house into a kindergarten school shy of her third birthday after the convulsions had relapsed hoping socialization and interaction would help with her words but that journey wasn’t met with support or informational resources. There were no special needs schools, and mainstream schools did not quite understand what special needs education was at the time. The early 90s was a hard time for my family and me; school after school one of which I was a student at and had offered to stay with her in class or rather would sneak into her class without permission to help and explain to the teachers how she learned at home with pictures and letters but the conclusions they all reached were the same, she did not interact, could not seem to understand, would not coordinate, basically they could not keep her, my parents would have to withdraw her.

After much thought went into it they elected to try homeschooling, no surprises there, educators came and left. I once heard a teacher curse at my sister, frustrated at her learning pace, and one of my brothers used a stick broom to chase her out of the house. It was hilarious but sad that adults acted cruelly to a child. A lot of these educators came with the promise of hope but left only offering pity, resilience was always how to describe that period of her life because I do not know how I would have handled it, they would say she had no cognitive skills or retentive memory, this little wonder that could remember how to fix a broken remote set or carry jazz song tunes from our dad’s recorder, never forgetting a tone once she has heard it and so we never believed what they said, we knew her better, they just did not know how to teach her, and though we did not know how to too at the time to be fair, we exercised room for openness and improvement, not force and criticism. Finally, our parents gave up on all mainstream educational routes.

The medical route began with my mum and me going to Enugu State teaching hospital in the eastern part of Nigeria after exhausting most of the then Bendel States hospitals where we lived. They ran a proficient state-of-the-art healthcare system at the time, and most people had recommended that my parents go there. They did many brain scans, with my sister crying through most of it because it required being separated from those she was familiar with, my mum and me. We would lodge in a nearby hotel close to the hospital, and in the evenings when we got back in, my dad would call us, and my mum would narrate the ordeal while I entertained my sister. We stayed for 3 to 4 days and at some hospitals a day or two, their conclusions, brain development issue, our conclusion, more questions.

Growing up I was not unaware of other disabilities, however, I could not correctly single out most as I can now. Like most people in developing countries, the awareness of physical disabilities is more recognizable than sensory disabilities, being blind and having a physical impairment are the two relatable types of disabilities in Africa. Every other disability is almost always misunderstood, misdiagnosed, or unceremoniously spiritualized. I did not see families as open as mine taking their children out so freely, although I would come to the realization years later that close family and friends had children with cerebral palsy, down syndrome, and autism but kept them indoors due to stigmatization, the support they all would have gotten from each other especially my parents if only they just lived openly advocating awareness.

Every special needs sibling has a different personality and handles coping quite differently, even siblings from the same household. Issues such as jealousy, anger, abandonment, or oftentimes not feeling loved by their parent or that sibling with a disability, can strain the relationship. It is for the parents to set a healthy foundation to bring inclusion into the home first even before society does, feeling loved at home makes it easier to handle whatever the world throws at them. Parents and siblings have different roles to play, none trumps the other in the measurement of love, however, both should be aligned. Parental love is different from sibling love, it cannot be dismissed or relinquished to the back. I have witnessed siblings go far and beyond for their families, farther than their parents could go as their generational capacity and exposure gives them a better advantage, and I have seen parents act in the worst ways too, it is neither black nor white.

Anyone can step in, and the role everyone plays is necessary, this is why parents, educators, therapists, policymakers, and leaders in government especially have to carry the siblings in the home along as key stakeholders if they are concerned with the future of children with disabilities. They are living through everything that child in the home experiences not mere spectators, but willing participants in the success path you envision for that child growing up into a thriving adult, as children do not stay children and their siblings will be their longest-living relatives or guardians.

What then happens when those bonds are not formed at the foundations or when parents pass away without electing a guardian, who steps in? Like earlier mentioned, every special needs sibling handles their sibling’s disability in their way, in my experience it was research and advocacy. Once I had the catalyst name “Autism” I fought it with research, education, and volunteerism. During the holidays, I was always at one charity event or the other, besides the free resources, I got to meet other children just like my sister which exposed me to a world of learning. It was psychological almost as it was empathy mixed with understanding, real facts, and practical actions. The kindness I was shown most of my younger years was that of pity but there I learned that true empathy was to make an impact. Volunteering at these advocacy centers was a place of solace, and I would always pass it on to whoever cared to listen, sometimes without permission, it all excited me, still does.

To date, my interactions have helped me understand life more independently specifically when relating to families who may have children going through what I had experienced,  as it does not matter what age a special needs sibling is. The advice is that if you can get them to speak to another sibling, it will do them good as a lived experience is the best experience, and that led me to get certified as a special needs family counselor to help other families and siblings.

I always wished I had someone to guide me through what it meant to be a special needs sibling, so I became one. I criticized the laws of my country, so I am training to be a better policymaker and legal practitioner. Why do I hope, because I have seen it happen, again and again, a culture quite like ours, when it does not expand its conversations to what it fears or what it is not familiar with will bring with it many blockages but it is up to us, to our generation and those coming to keep infiltrating it one drop of knowledge after the other. A caregiver can be anyone, however, a perfect caregiver is one trained and planned for, it will do everyone concerned a greater good if they elected for it and not have it thrust upon them.

While living abroad I had one mission in mind, ‘go home after school and take care of Bubu’.  There was never a doubt that I would stay back, I was not needed, yes it is comfortable and I could make more money, everyone wants to live abroad because of the state of the country not because they do not love their country, endless criticism of why do you want to move back home like its a plague. All I knew was that my sister was here,  and that was home. I could make it better even if I did not know how to at first. The system has its flaws and needs restructuring but what I met has both shocked and inspired me. It was not just Bubu anymore, it was families I would meet in the strangest of places, it was conversations I have enacted with a stranger on the plane and how they have one niece or nephew living with a disability or schools visited and lamented at their lack of funding, mostly it was the unavailability of centers, hospices or vocational job opportunities for teens and adults like my sister who had not gone through mainstream education. It is educational policies that are not being adopted into laws in states, lack of data, and disability acceptance though now openly being discussed but still, stigmatization and non-inclusivity exist.

I want to help in impactful ways, exploring what I can bring to the table, so I have switched my tactics, no longer carrying a voice for two; but a voice for all. For every sibling that didn’t have a support system, families that require representation, and persons living with a disability that needs to be advocated for or them being advocates. At Bodtink Legal Practitioners and Siblings of Special Needs Foundation (SOSNEEDS), its mission is to be a bridge of guidance to families on issues that focuses on the evolvement and re-imaging of how disability is attended to in Nigeria. Its three-arm units (Community Advocacy Unit, Family Reorientation Unit, and Special Needs Legal Unit) centered on strategic areas that are necessary within the disability care scene with growth targetted at its beneficiaries. Persons with disabilities are an extremely marginalized population, and their challenges have increased following the Covid19 pandemic, with glaring difficulties we can no longer ignore.

The world is now a global village, we raise others as they raise us too, we can all have a voice that speaks for all. I am hopeful and thankful for where Bubu is now, she has done very well and is currently being homeschooled by us in the home, she does both the Son-Rise program technique and music therapy as she still loves singing and never forgets a tune. I no longer have a voice for just two, she is growing her voice, and I now have one that’s made for all as we all should.