Hellen Beyioku-Alase on using her voice to help Deaf women in Nigeria

Angela Santillo
Jan 7 · 23 min read

This is a transcript from episode 51 of the podcast And Then Suddenly.

This episode is part of And Then Suddenly; Rising Voice(s). This special series features conversations with partners from Voice. Based in Africa and Asia, these individuals -often leaders of organizations or small groups- are working tirelessly to ensure that their own voices as well as those they represent are at the table and not on the menu. The moments they share are their very own and the conversations are impromptu and candid.


Angela Santillo
And now we welcome the new year full of things that have never been. Rainer Maria Rilke.

This is And Then Suddenly, the podcast about the unexpected moments and turn our lives upside down. I’m Angela Santillo. Welcome to the show about big life moments. And I don’t know what my guests are going to talk about until we meet. And to everyone out there, happy 2020. I hope you had a great holiday season. I’ve been gone the last few weeks because I had to travel for the holidays, saw the family, I survived. Now I’m back in New York City. And I don’t do resolutions necessarily. What I do try to do is look back on the year that just happened, try to understand how I can do things better, and try to figure out ways to do the things that I’ve been putting off.

2019 was great. I mean for the show, I kept breaking records every month. Every month was higher and higher downloads, I have more followers, more subscribers, I developed this wonderful partnership with Voice, which I will get to in a second. So, lots of positive things. In addition to running a weekly podcast, I do have a full-time job. I also launched a consultancy last year, I had writing deadlines, and to deal with the stress of all of it, I ran a half marathon in December. Truly just to be able to deal with all the stress. So that’s all positive but I need to do a little less to do it better. So, what that means for this show is for the next few months, I am going to run on a bi-weekly schedule. So, while it’s been weekly since July, it’s going to go to bi-weekly and that’s just for the next few months. So, just a heads up about that.

And I am very excited about this episode. This is Episode 51 and it is the latest installment in my special series with Voice and that special series is “And Then Suddenly; Rising Voice(s).” What makes this episode so special is it’s something I have never ever done before in the history of this podcast. It was a big learning challenge. Or it was a big thing to figure out how to do for both me and Voice. So, who is Voice? Just to recap, in case you’re new to this special series, Voice is an innovative grant facility that promotes diversity and inclusion in 10 countries in Asia and Africa. They are financed by the Netherlands Ministry of Foreign Affairs and it’s executed by Oxfam Novib and Hivos. Now their aim is to amplify and connect with us far unheard voices to leave no one behind. So, in this special series, I’ve been interviewing guests from Asia and Africa. They are usually the leaders of small organizations and they’re doing what they can to make sure that their voice along with those in their communities are at the table and not on the menu. Now, this series launched I believe in September, it was sprinkled in throughout the fall and then we’ve had group of them happen throughout December in honor of Human Rights Day.

So this is the final episode of that grouping and it is with Hellen Beyioku-Alase and she is from Nigeria. She is the Executive Director of Deaf Women Aloud Initiative and she is the first deaf person I’ve interviewed on my podcast. Now, we did this through a Skype video call, her and her interpreter were in front of the camera so I could see them, they could see me. And in order for Hellen to approve her interview before it went to air, I did a transcript of the interview for her to look at. Now in case you don’t know, I am doing transcripts of the show and especially all the episodes in our “And Then Suddenly; Rising Voice(s)” series. So, if you want to read those, go ahead and head over to Medium.com and just find me @Angela Santillo. I will also include a link in the show notes to this episode to Hellen’s transcript because things did get lost in translation during our conversation, so she provided more details to her answers in that transcript. So, what you’re going to see is an edited transcript with her notes. Go ahead and head on over there after your interview and check that out. And this is also just a heads up about what you’re about to hear.

But I’m really honored and excited to be able to have this be the premiere interview of the new year. Hellen is remarkable, and I don’t say that lightly. I have been thinking about her story and her moment since we met last month. So, without further ado, welcome to 2020. And here is Hellen.

Emmanuel Aribena (interpreter)
My name is Emmanuel Aribena and I’m sign language interpreter for Ms. Hellen. I got to learn sign language from my parents.

Angela Santillo
And Helen, go ahead and introduce yourself.

Hellen Beyioku-Alase
Thanks for giving me this opportunity. My name is Mrs. Hellen Beyioku-Alase, I am the Executive Director of Deaf Women Aloud Initiative. An organization that works to promote the rights of Deaf women and girls with proper access to health care services and information as well as helping Deaf women and girls fight against Sexual and Gender Based Violence (SGBV) and much more.

Angela Santillo
Perfect, all right. So what is one moment that changed everything for you?

Hellen Beyioku-Alase
The one moment that changed everything for me was the day I used my voice to fight for the rights of Deaf women and girls to access proper healthcare services and information because some years ago before my intervention, many Deaf women found it difficult to go to the hospital for simple medical treatment. And this was as a result of communication barriers and wrong use or administration of drugs and treatment on Deaf patients by some health workers which resulted in severe pain and loss of lives.

In addition, almost all the doctors and nurses do not understand how to communicate or handle Deaf patients. They are used to shouting at us on several occasions, or delay our attention to seek medical help, label us with unprinted names, and keep giving excuses on health matters. This negative kind of attitude discourages many of us from patronizing government hospitals again so instead we visit and patronize traditional healing homes for treatment and childbearing, which we consider as an alternative choice.

In fact, Deaf women and girls are left out to struggle on their own. They are the more neglected group among other women with disabilities because we did not have a voice to speak for us and we are not recognized or given equal opportunity to be included in programs or policies. The society does not deem it fit to carry us along. Most of the time, we are often used and dumped by the people who claim to advocate for us. It was at this junction that I make up my mind to do something knowing full well that our matters will still remain the same if we did not choose to act fast now in the next few years.

Let me share my experience that led to the struggle. The day I was pregnant with my first child, I came very early for antenatal care and I was the first on the list. Instead of the nurse letting me see the doctor, the nurse just looked at me and kept me aside for some hours until every other nursing mother was seen. Because of that I told myself, “If I don’t act now, it means that no one will.” I took the next step to meet the Medical Director of the hospital where I poured out what many Deaf women are facing in that hospital, how some of them are dying to see their doctors and nurses in hospitals and how they are not patient enough to accommodate our needs. I also wondered where do we go from here if help is not forthcoming? Thankfully, the Medical Director of the hospital was passionate to understand my plight and she eventual paved the way for us Deaf women and girls to access health services.

From that moment, I used that opportunity to form a group and bring Deaf women and girls under one umbrella and this birthed the Deaf Women Association of Nigeria, Abuja Chapter in 2014 for the purpose of advocacy and empowerment. Through our constant advocacy, we received a contact from Ipas and Australian government in 2016 that they were interested in our project and for first time, we partnered with both organizations to implement a year of projects. The project was meant to train sign-language interpreters to assist Deaf patients in the hospitals. It was through this project many Deaf women and their children came out from villages and towns to access health services free of charges in the hospitals. Why? Because we have sign language interpreters in the hospitals and they are all happy to get medical care whenever they feel any ill or have complicated issues.

At the end of the project, we hoped the federal government would take over the project from where we stopped, but this was not so and we have to start all over again. If you look at our projects in 2016, we have more than a thousand Deaf women that are not even members that used to visit hospitals. And they always shared their experience and said, “Hellen thank you, thank you very much. For the first time I can go to the hospital, for the first time I can tell the doctor my problem, and the doctor can also give me options to make choices.” I was very happy because I know I paved the way for them to access their rights to sexual and reproductive health and give opportunity for Deaf women to make decisions about themselves, because their bodies are their rights and sexual reproduction is their rights. They also have the right to make the decisions they want.

Recently, some of the Deaf women who gave birth through cesarean section didn’t make it out alive because after the projects in 2016, everything seems not to be working again. Thankfully, the intervention and support from Voice gives us hope to develop a sign language glossary so that health workers such as doctors and nurses can understand our problems and be able to communicate with us without the need of getting a sign language interpreter as a third party. The support that Voice gave us has started waking the mind of our government and healthcare providers to start including sign-language for Deaf people.

Angela Santillo
That’s a lot, in a good way. I mean, I got emotional hearing that because I can’t imagine how terrifying that would be, especially with pregnancy, to not be able to communicate because it’s already such a high risk situation. I just am curious before I ask…I’m assuming that because doctors can’t communicate with the mothers, is the health of the children being impacted? Like how does that work with the doctors communicating about the baby’s or the children’s health if the mom isn’t hearing?

Hellen Beyioku-Alase
You can imagine the challenge when the children are sick and how the doctor communicates with the children or babies when the mother is not hearing. This in fact has been our major challenge between Deaf women and health workers. Remember the issues of accessible health care services and information involves life. Imagine, if the mother of Deaf child cannot write English, if she does not know how to read or write, and most of the times, I will be contacted to come and help them to write their health situation to the doctor. And remember, I am also a mother of four. It is not easy for me to leave my family and go and attend to others.

Let me share with you our recent just concluded medical outreach where three Deaf women tested and have HIV+ and one of them dies. Do you know why? Because of lack of information. They don’t know that there are possible drugs to minimize that effect. We know there are drugs for HIV patients to control it. But our Deaf woman does not realize that there is something like that.

Sometimes, some of our children can sign and they can interpret these signs to the doctor. But somehow, it is very wrong for our children to have privilege into our privacy and this can brew suspicions or neglect between the mother and her children so we have to tread with caution and that is where the issues and development of health specific sign-language glossary comes into effect.

Angela Santillo
Yeah. And I’m curious…so you said that your moment is the first time you used your voice to talk about this. And you also mentioned that you’re a mother of four. So was this after your first baby that you talked to the manager in the hospital or when did that happen?

Hellen Beyioku-Alase
Yes, it was when I have my first baby and that was in 2012 and I was a student at University of Abuja too. And at that time, I was living in fear because of constant maltreatment of Deaf patients in the hospitals. I shared my experience with my colleagues at the University of Abuja and they tried their best to get the help I needed but when I see that help was not forthcoming, I had to summon courage to help myself by visiting the hospital again and approach the Medical Director. I laid my complaint in writing and the director was so gentle to handle my plight and the matter was resolved immediately.

I thought my problem was over and I started making arrangements to visit the hospital again. During the labor period, I was in the hospital with no health worker to explain the step by step do’s and don’ts. They just used hand gestures to tell me to wait and that it is not yet the time. I was left cold and in pain. I felt so bad.

So when the time for labor came, I was told to lay down when the baby was about to come out. The midwife just said, “He’s not ready. He’s not ready” and left me. They left me in the labor room for more than 45 minutes. When they came and saw the baby’s head outside, they just shouted. I can’t imagine if the baby had come out at the time I was struggling without help, what would have happened then? After giving birth, they don’t even communicate with me or tell me sorry or apologize. They did not tell me anything, they just made decisions themselves without my consent.

That discrimination in the hospital is not a small thing. After I left the hospital I told myself, this thing must change so that other Deaf woman will not have the same experience. That was how I used my voice to effect change in healthcare services.

Angela Santillo
Yeah, and I’m curious…so you know this is, I’m guessing has been a very long time problem in Nigeria and knowing that as a Deaf woman and having your first pregnancy, how did you feel going closer and closer to the to the due date knowing that these problems existed?

Hellen Beyioku-Alase
Thank you very much. Firstly, when I wasn’t pregnant, I used to hear of Deaf women challenges on this and that and I did not take it seriously because I was not pregnant and considered it as if it will not happen to me. When I got married and I got my first pregnancy, I went for ante-natal care services to register and for the first time I sat for nine hours in a day. I was like, trying to get the attention of the doctor and nurse but they refused to give me attention even when calling names and I could not hear. They only told me to calm down. Calm down, sit down. I was confused, from morning to evening.

When I saw I spent almost close to nine hours waiting, I was uneasy. I went to meet the right authorities in the hospital. I told him I said, “I have been here since 6am. See now it’s late already. You have not even given me the form to fill.” And the authority was like, “This Deaf woman is very bold to come and meet me. And the first time in my area, no Deaf woman has come to meet me like that.” And I told him that, “Yes it’s my rights.” The authority felt okay. After filling the form, these nurses were angry, giving me a frown face and said I was troublesome. I told them, “No, I’m not troublesome. I have been here since 6am and it is late. Is it because I am deaf?”

Now after filling the form, they give me an appointment to come the next week and the next appointment was very bad. They told me to come early by 6am in the morning. I left my children at home and got to the hospital quickly and sat down there. However, some people that came late were called before me and attended to and I was just sitting down there and no one cared about me, as if I didn’t exist. Before 12pm in the afternoon, when everybody is about to leave, I saw these nurses talking and advising. I could not get the message because there was no interpreter so I wrote to the nurse, “Please tell me what you lectured.” These nurse told me to wait, that I am disturbing him. I felt so bad that I vowed never to come to that hospital again because I believed it will be worse during the deliver time. So I chose a private maternity clinic that belonged to a church.

And that was how I gave birth to my second child. Honestly. I was scared of the way and attitude of health workers then, to the point that I cannot risk trusting my life and unborn baby in their care in the hospital. They are not friendly.

Angela Santillo
Wow. Why do you think it is that doctors treat Deaf women that way? Is it because there’s discrimination or is it because they feel overwhelmed that they don’t have the resources to communicate? What’s your thought on that?

Hellen Beyioku-Alase
Thank you. I think it was pure discrimination and unavailable resources to communicate with Deaf patients. Before my intervention, these doctors used to treat us badly. They’re used to us having unprinted names and some of them just used us as a jester which is unhealthy. Those doctors don’t understand the Deaf women and the Deaf women don’t understand them. They don’t have the patience to interact and the worst of it is that the doctors lack patience. So when we come up with a project to find lasting solution, it was then we understood that there was no available tool to communicate with us.

Angela Santillo
And you mentioned that you have…I think you said 40 doctors who want to start learning sign language. And with this program that you had in 2016, what was the response from the medical community? Were they excited to be able to learn some communication skills?

Hellen Beyioku-Alase
Like I said earlier, during our program in 2016, the doctors did not learn sign language.

Angela Santillo
Oh, it was interpreters.

Hellen Beyioku-Alase
Let me gave you an insight into the project we held in 2016 with Ipas and Australia Aid. The project was meant to empower Deaf women and sign language interpreters on how they can gain access to health services and information without barriers. About twelve sign language interpreters were trained and posted to six areas with paid salary for six months with hope that the government will take over after the project. This was a good and simple project.

Unfortunately, the government could not take over despite their promise. They even collected their data and information, and promised to employ them again. This is going into four years now and we are still hopeful, with our constant advocacy and lobbying, that the government will do something about it.

Angela Santillo
Got it. But it sounds like, I don’t know why the government isn’t taking on this program, but it sounds like it was well received by everybody. The medical professionals, the interpreters, the women, that it was positive for everybody.

Hellen Beyioku-Alase
Yes. It was very positive at that time because the project involved several doctors and nurses and we got positive responses. We also got to train over twenty doctors and nurses in FCT on the basics of sign language for six weeks with the support from the American Embassy, Abuja. We also exposed them to various workshops and training on Deaf cultures and some of the attitudes they encountered while Deaf women and girls were seeking accessible health services and information. We did some short play where we gave some insights to the negative attitudes of health workers toward Deaf women and girls to access health care. This was somehow an eye opener to them and they were encouraged and challenged to develop interest in sign language.

Through our partnership with the government in FCT health and human services, we have been able to train some health workers in a basic sign language workshop. The results have been positive and I gave birth to my fourth child in the hospital because there was a change of attitudes and accommodation of sign language. With more training on sign language for the health workers in hospitals, the communication and attitude barriers will be a thing of past.

Angela Santillo
Wow. I mean, I can see you. So we’re doing video chat, I should say for the recording. And I see how passionate you are. I don’t think, you know- clearly this is something that you’re very concerned about and it’s motivating. I’m just curious, you mentioned that when you started speaking up for yourself during your first pregnancy and people said that you were being dramatic being pushy. How did that make you feel? Did that make you want to push even harder? Or did that make you feel like maybe you should pull back like, what is that process to find your voice?

Hellen Beyioku-Alase
Thank you very much. The truth is that I was dramatic and pushy and I don’t know what come into me that I started speaking up. Nobody taught me to speak out. I heard a lot of stories from Deaf people and they would end up saying, “I don’t want to go to that hospital.” And of course, I did not take them seriously. When I checked in to the hospital for the first time as a nursing mother, I can recalled some of the attitudes some of my Deaf women told me about health workers. I started to see the same and I was so scared and I think maybe I am going to die with this kind of pain. Their attitudes really turned me off, I was very angry and restless and the doctor and health workers wwere like, “Why are you shouting?” I told them that, “It’s because you are not Deaf and you do not understand the pain I am passing through despite Deafness.”

So I said, I must address this and I cannot allow this to continue and affect other Deaf women. I was labeled as a troublemaker and was also discouraged by the people who I look up to. I told them I am okay to be regarded as troublesome for demanding my rights, because they don’t understand the pains I am going through, the discrimination, and the wastage of transport fare I paid to attend the antenatal care. That is why I make up my mind to be leading advocate figure for Deaf women and girls. I decided not to be discouraged because if I do, our Deaf women and girls will continue to suffer in silence. So when I spoke out, other Deaf women came to back me up. And we have about a hundred Deaf women backing me up to speak out and not to be discouraged.

Angela Santillo
Wow. I’m curious…how do I want to say this. Okay, I guess there’s a two-part question here. I’m curious, what are the attitudes in general in Nigeria towards Deaf people? Because I’m curious if you’re surprised that you stood up for yourself when you did.

Hellen Beyioku-Alase
You see, the attitude of Nigerians is not a small thing. For instance, our society does not see Deaf people, especially women and girls, as human. Their view about us is that we are completely useless or idiots because we have no voice of our own. No one cares. We are often taken advantage of at anytime, on any day. We will be sent on errands on many occasions, used as domestic labor, there is sexual and human trafficking, all due to the fact that no one will hear or understand our problems.

There was a time I entered a public transport system with my interpreter and when we both sat down, the first thing I told them is I am Deaf, I cannot hear you. One of the passengers what like saying, “Deaf again, they are troublemakers and stubborn.” And my interpreter who sat close to me will be like, “They are saying that Deaf woman is a troublemaker and stubborn.” I see there is lack of understanding and not enough sensitization. So when we start speaking up to correct their view about us, they were like, “So, some Deaf people are so different and down to earth.”

Such discrimination happens almost everywhere in markets, church, school, ministries etc. I was so sacred to use my expertise as an advocate to do something about it but from there, I was able to record success by collaborating and forming partnerships with several NGOs to ensure that Deaf Women and girls are not left behind.

Angela Santillo
Before you had kids and when you were younger, were you somebody who…I don’t know, did you speak up about this anger and discrimination before or was this new to becoming a mom?

Hellen Beyioku-Alase
Okay before, I was not born Deaf. I could speak and talk to my family about my situation. But when I became Deaf at the age of 6, in the year 1994, it was the journey of challenges, discrimination. I was too young at that time and I couldn’t speak mind because my family found it difficult to understand me. As I grew up to become a mother, I witnessed a lot of discrimination against Deaf women and girls and how they were being denied accessible healthcare, denied being given attention, denied being given access to transportation and empowerment and skills acquisition training.

It was through the help of an organization named Ipas that I learned to speak up and that if we don’t, the society will not understand us. If we don’t stand for our rights, the society will not signify us. Through this in 2014, I was able to stand up and speak up. But little by little we are getting there.

Angela Santillo
Wow. And it sounds like it’s hard for other Deaf women to speak out because of the communication problems and the stigma. With your work with these women, are you seeing other people starting to stand up and talk back or advocate for themselves?

Hellen Beyioku-Alase
Yes. Since I started this organization in Abuja, I take the courage to organize workshops and training for them to always speak out. During one of our trainings on gender-based violence for example, Deaf women tend to keep quiet when they are constantly abused or trafficked from one place to another. They can’t even report to the police. Some of the Deaf women are alleged victims of sexual abuse, rape, and domestic violence in their family. The abusers will tend to give threats saying, “If you report we are going to kill you.” So they choose to keep quiet.

For my first time, when I discovered myself and my area of expertise, I reached out to Ipas to train over fifty women to speak up and stand up for their rights. After this, over ten Deaf women came out to say that they were sexually abused. And one of them gave an account on how she was raped. We encouraged her to go and report the matter to the police and she said the police was- when she first introduced herself with sign that she could not speak that she was Deaf, the police started making some hand gestures. The police were saying just calm down, that she should go back, and should leave it for God. And she thought, “That what is deserved for being raped?” No justice for her just because she cannot talk.

Well, we did not give up, we kept on pushing until we use this kind of trained manual booklet to get the police to know what we are asking for. So these police were surprised that we, the Deaf women, know the law and from there they opened a file for us to put down our statement and the perpetrator was arrested. This was how I used these experiences to encourage our women to speak out.

Angela Santillo
As I heard what you were saying, I got very- I like wanted to cheer. Cause that’s just amazing. I’m curious when you’re starting to see these changes based on your work, how does that make you feel?

Hellen Beyioku-Alase
Thank you. First of all, I am happy that some of our Deaf women are making bold attempts in demanding their rights. I consider it to be a great achievement because some years ago, some men will attack our women, they never to come out boldly to speak out for themselves, and whatever case they encountered, they must get the men’s permission first to do anything. I cannot stand it when some of them are beaten, suffering or trafficked and dying in silence for healthcare. So I am more than satisfied to see them demanding for change, for something to be done in better ways that suit them.

Angela Santillo
Yes. Wow. So it sounds like now you know, you’re…so what’s coming up for you? What are you hoping to continue to do or to start doing? I know that you are interested in restarting this program or getting interpreters back into hospitals but what are the goals and aspirations now of your organization and your work?

Hellen Beyioku-Alase
One of my long-term goals is to train and empower more health workers, Civil Society Organizations (CSOs), police and uniform personnel on basic sign language so that they will be more helpful to push for the recognition and adoption of Nigeria Sign Language as official language of the Deaf. I also want to help Deaf women access justice too. For example, if I take somebody to court without a sign language interpreter, I can’t win the case. But before I can achieve this, I need to put some serious work on helping Deaf women get access to health services and information first through the current project at hand and once that is resolved I will think of how Deaf women can access to justice. Those are my goals.

Angela Santillo
Perfect. I just want to ask a quick question about your kids because you mentioned you know, the fear aspect of being out in public with them knowing that you are seen as this troublemaker, if you will. What do you think your kids think of you?

Hellen Beyioku-Alase
In the first place, my kids used to hear some unprinted name about me from their teachers, neighbors and friends. When they cannot stomach the insult, they came boldly to inform me about it and it was there I took the bold step to warn those speaking ill of my family to desist from such an act and any attempt to do so will have themselves to blame. My kids were very happy to see me speaking against it in their presence and from that day, no one dared talk ill of us for out of fear of the unknown.

I also trained them to be strong. I told my children, “You have to be strong for your mother. You need to know your rights” and I have not done anything to offend them but my children are very strong boys. Before then, I was scared at the way people always look at me and my children when I take them to school and they will say, “Is this Hellen’s children?” so I wondered why this question but as time goes on, everybody has come to accept me the way I am because they recognize that I am doing worthy causes for my community.

Angela Santillo
Perfect. Well, is there anything you wanted to add or anything you wanted to say that you’ve been wanting to say but haven’t had a chance?

Hellen Beyioku-Alase
First of all, I want to thank Voice for making Deaf Women Aloud Initiative part of the family. Secondly, I want to add that our organization is dire need of bus for movement and mobilization of our women living in rural area for sensitization and accessible healthcare because they are the worst hit. Lastly, thank you so much for the opportunity of having a live interview with you and hope my story inspires and touches lives.

Angela Santillo
Now to read the edited transcript with all of Hellen’s notes, please go to Medium.com and find me @Angela Santillo. Also check the show notes for this episode, the link will be there. And to learn more about Deaf Women Aloud Initiative, visit them at their website at dwia.org.ng or you can find them on Facebook at Deaf Women Aloud Initiative. And Hellen is also on Twitter so go ahead and follow her @hellenfab. You can follow Voice @voicetweetz or on Instagram and Facebook or on their website voice.global. And Then Suddenly is also on Facebook and Instagram. So go ahead and follow me there or check out my website andthensuddenlypodcast com. So here’s to a new year. Here’s to all the things that have yet to come, go make it happen. Thanks so much for listening and have a good one.

Angela Santillo

Written by

Writer | Corporate Storyteller | Host of the And Then Suddenly podcast

Welcome to a place where words matter. On Medium, smart voices and original ideas take center stage - with no ads in sight. Watch
Follow all the topics you care about, and we’ll deliver the best stories for you to your homepage and inbox. Explore
Get unlimited access to the best stories on Medium — and support writers while you’re at it. Just $5/month. Upgrade