”Once the mind is made up…the things I achieved are proofs of the power of determination and focus” – Mama Deaf.
She comes across as bold and outspoken – traits almost snuffed out by the menace of Deafness. But the fighter’s muse in this conqueror just wouldn’t be defeated. Nay, she would find a way around the hurdles. To take from Robert Schuller:
“When faced with a mountain, I will not quit, I will keep on striving until I climb over, find a pass through…”
Ask her how she did it and she fires out – countenance daring, fist clenched: “At one point, I became focused and determined!”.
Though now slowed by age, this tireless septuagenarian still models traits of determined focus and the ‘can do’ spirit to meet the unending hurdles that comes with deafness. And she challenges others towards same.
But there was a harrowing interlude, those years of wilderness wanderings – disillusionment, doubts, discouragement, suicidal thoughts. In retrospect however, it was those years of darkness that carried the substance which makes her story tick and tickle.
Meet Deaconess Adedoyin Beyioku-Alase, veteran disability rights advocate and founder, Deaf Women Association of Nigeria (DWAN) – number 14 of the champions series.
Disability issues blogger, Alexander Ogheneruemu had the privilege of a “one on one” interview with her at her humble abode in the suburbs of Lagos, Nigeria.
BACKGROUND
Mama Deaf, as she is famously known was born in Ebute Meta, Lagos in the 1950s.
“I grew up with my great grandparents in a middle class home, Mama recalls. Grandpa was a strict disciplinarian, well educated, and worked as a pharmacist in one of the old companies. Grandma, unlettered though, was endowed in native intelligence”.
Mama Deaf would take after both – the survivor’s stuff she’s made of, she never allows her limited schooling betray her erudition. What she lacked in advanced schooling she made up for through self study and wide exposure. The disciplinarian in her is best experienced that told.
DOWN DEAF LANE
Mama was rounding up her teenage years (aged 19 or thereabouts) when deafness struck. Hearing loss, for her, was gradual.
September 5, 1974, she still has that date filed in memory.
“I had malaria symptoms and checked into an hospital. There one injection shot from an inexperienced nurse spelt instant calamity. I immediately fell dizzy, lost balance and was falling. Luckily, my fiancé who was nearby me caught me. The aftermath of that “one needle shot went wrong” was a persistent ringing sound in her ears – tinnitus!
The search for a cure commenced…
“My parents were very supportive. Father, he was quick to accept the situation. Mother however was adamant – going desperate lengths in the search for a cure. She would go as far as selling personal effects to raise funds for a solution that wouldn’t be”.
Instead charlatan after charlatan masquerading as faith healer, witch doctor, troubadour, would exploit her desperation. The last straw was one ‘daft to the extreme’ faith healer, who in guise of conducting prayers for deliverance, sexually molested the young lady. “After that incidence, I told my mother I was done going around with her in the “wild goose” chase to reopen my ears.
ADAPTING
Adapting was a hard one for mama. The unexpectedness of losing her hearing at that point was a massive blow she found difficult to come to terms with. Nor did it help that for a long, long time (1974-1994) she had no one in her space (to guide her) who’d gone that path before. Thus locked in her own world – no friend, no ally, no mentor with a lived experience of deafness to guide, the young lady fell for wrong coping strategies:
“I would hide myself, being ashamed of my deafness, and from 1974 – 1985 was alone in my own world. I struggled with suicidal thoughts. It was like my whole world came crashing”, she recalls – brimming with emotion. This once social and outgoing lady who in her hearing hey days loved partying and socializing suddenly turned recluse. Frustrated, she asked: what kind of life is this? Deafness literally cut me off from things I loved – socializing, partying, and oh yes the music!
At that point she recalls (with a tinge of melancholy) the lyrics of a favorite James Brown record hits of the 70s: ‘I am black and proud – say it loud!’.
I’d later realize that mama’s recall of those lyrics carried deeper meanings than a mere reminiscence upon some good old days. The lyrics were a prophetic symbol of the vision and struggle she had lived for within the disability movement – the emancipation of deaf women, girls and children in Nigeria.
Some people say we got a lot of malice
Some say it’s a lotta nerve
But I say we won’t quit moving
Until we get what we deserve
We’ve been ‘buked and we’ve been scorned
We’ve been treated bad, talked about…
Brother, we can’t quit until we get our share
Say it loud (I’m black and proud)….
STEPPING UP TO THE GAME…
Here we talk about some definitive moments, memorable encounters down the deaf road. How did this Amazon eventually come to terms with deafness? How did she make meaning of her circumstances. Mama speaks…
Ayoade – Because of him I decided to live
At some point during the isolated years 1974-1981, Mama had her first son whom she named ‘Ayoade’ – literally, crown of Joy. “He was my ears”, she recalls. Look, at that time, I was still struggling with suicidal thoughts. I thought I was the only deaf person in the world. However fortunately or unfortunately (whichever you choose), Ayoade too became deaf at age three – measles. From my perspective, there seemed to be an element of Fate in my first son becoming deaf. Two quick observations: Ayo’s deafness made me accept mine and to focus on him (a mother’s heart). Also, before then, I’d wanted to die but because of him I decided to live”. Today, many years after, Ayoade (the only one deaf among my biological children) remains my real my crown of joy”.
Reading Her Way To Association
“Books are good company, in sad times and happy times, for books are people – people who have managed to stay alive by hiding between the covers of a book.” ― E.B. White
With the switch from ‘outgoing to recluse’, the young Adedoyin would depend more and more on reading . This helped to a considerable extent in bridging the communication gap. As I have worked on this series, I notice a repetitive trend: deaf persons featured emphasizing how much of a ‘game-changer’ reading was in their journey.
“I read everything – including pages of newspapers used to wrap ‘akara’ (bean cake). At one point, I was buying between 5 and 6 newspapers in a day. And that investment in self-education paid off ”. Mama literally read her way to a breakthrough when she learnt about an organization of Deaf business men and women in the Punch newspaper. Her curiosity led her to connect – and from there she was able to make powerful associations/connections that changed her outlook and perceptions on disability. Here was where she had first access to the sign language (before then she had thought, ‘once Deaf, a person is useless).
DWAN – a child of Necessity – born to fill a gap.
She continues: “I made steady progress after joining the Organization of Deaf Business Men and Women in Nigeria. Through that association I got invited to Jos as delegate for a leadership conference organized by Gallaudet University. At the conference, there was no female voice heard. One Professor Emilia Chukwuma asked the women to speak up and I took the challenge. Afterwards, she asked me to organize Deaf women in Nigeria. That moment heralded the birth of DWAN – and it taught me deep lessons in determination and focus”.
MEETING DISCRIMINATION
“Discrimination and disability go hand in hand”. The response came instant when I posed the question of how she copes with the soft-cuts that attends her deafness. “You can’t escape it, mama drives home the reality with a sigh of resignation. How I cope with the discriminatory tendencies of a society that expects me to hear but…? Well, I accept my limits. But I take my time to educate someone who discriminates against me. Sometimes, I distance from such. And still there times when I make it war!”
But mama doesn’t close this subject without lamenting the many hurts she has faced from society’s stereotypes because of her deafness. “It sometimes affects my self-esteem, and she admits with some sadness, I know I’d have been higher up there if I hadn’t become deaf. Nevertheless, I thank God”. In situations like this, mama has a habit of invoking the serenity prayer of Reinhold Niebuhr:
“God give me the serenity to accept the things I cannot change, Courage to change the things I can, and wisdom to know the difference.”
Deafness has taught me a number of life lessons, she continues, for example, I developed a tough skin to many situations that otherwise could bog me down
Mama Deaf’s favourite quote/life philosophy? She puts it to be the golden rule of the religions: “Do to others as you want them to do to you”
Is Disability A Bad Thing?
I made a point of putting such tricky question to this Amazon of the Disability movement. Her response, blunt to the point, minced no words: “Yes, it is a bad thing – more so hidden disabilities like deafness. I will never wish it on an enemy”. She reinforces this by using her own experiences and others, mirroring the hurtful attitudes of society to people with hidden disabilities.
Biggest Disability related scars
“That will be missing out on the thrills and adventures of social life, opportunities missed in politics (mama is gifted in demagoguery), missing out on sounds – singing birds, cock crow at dawn, the squeaky wheels of a loaded bicycle, the rhythms of music, I miss them”, she says.
Advice for young and upcoming generation of PWDs.
Mama believes education is key. She is always encouraging the young ones to maximize opportunities to develop themselves. Her personal sacrifices towards the educational upshot of others (a privilege she didn’t have) reminds of Oseola McCarthy – Hattiesburg Mississippi’s local washer-woman and philanthropist.
“Be patient. Rome was not built in a day”. With sage wisdom, she advises: “wait for your time, you don’t achieve real success ahead of your time”.
“And very important too, is to have confidence, goals and a focus. You can be great despite disability”.
The Disability Champions Series, an initiative of Joy Bolarin (Executive Director, Jibore Foundation) is anchored by Alexander Ogheneruemu (Disability issues blogger).
Special acknowledgement to T.O.L.A Foundation for constant back up supports.