The beautiful Ndifreke Andrew-Essien (Freky), has over twelve years of experience in civic leadership, volunteering, community work and in different programs in relation to non-profit organization sector.

This Rivers State born founded Freky Andrew-Essien Care Foundation known as FAECARE Foundation, a Non-Profit Organization which focuses on vulnerable groups in communities; providing step gap support services to these vulnerable groups such as vulnerable children, persons with disabilities, youths, and other less privileged in communities.

As a woman with disability, she focused her work on persons with disabilities especially women with disabilities, pioneering various programs, forming networks to promote the rights of women with disabilities.

She has volunteered and worked with international and local organizations, for instance, she participated in President Barak Obama’s Flagship and Inaugural Young African Leaders Initiative, she is also a Mandela Washington Fellow.

An industrious woman with some enviable academic qualifications, she is a certified management consultant, BSc and Masters in Human Physiology and Public Health with various training and certifications and now a renowned disability rights advocate, a motivational speaker and she is blessed with a sensational voice for singing.

In this interview, she shared with us the challenges women with disabilities face and brief about her NGO.

TQM: How did your Disability occurred?

In the year 2002 on the 26th of December precisely, I was in school in the university where I was a student at the medical school, I was preparing for my professional exam that was coming up in the month of January. Being that it was a day after Christmas, I decided to do some visitation in town, since I didn’t travel home for the holidays. After studying for the better part of the day, in the evening, I picked up cards and gifts that I will do some visitation with. I boarded a bike (Okada) but unfortunately, we got involved in a road accident and I fractured my spine on the spot. I broke my back; I had a burst fracture on my spine. It is a long story, I can’t go into all of it in one stretch but basically it resulted in being bedridden for a while and then having series of surgeries, learning how to seat and finally having to resort to being on a wheelchair due to spinal cord injury.  So, that is how my disability occurred. I wasn’t born with a disability, I had spinal cord injury as a result of a road accident as a student in the University on the day after Christmas.

TQM: As a woman with disability, can you take me through the challenges faced by WGWDs in Nigeria?

Well, as a woman with disability who lives in Nigeria, I can give first-hand information and details of some of the challenges faced by women and girls with disabilities in Nigeria. They are many, but I will give a few of them. One of the major challenges that we face for most parts, is the interaction of being a woman and being a person with a disability. The interaction between these two Dynamics confers on the woman with disability a double disadvantage. We know that in history as regards to the rights of individuals or persons that we have the women’s Rights movement and we have the disability Rights movement. Both are really strong around the globe and in Nigeria, but in these two movements I have seen, it is unfortunate that the woman with disability does not come up as a priority on both platforms. This is a challenge because the needs and the concerns of women with disabilities doesn’t make the front of a line of challenges making her even more vulnerable among already vulnerable groups.

Another major challenge that women and girls with disabilities face is the challenge of not being taken seriously as regards their own input in community life and participation. This usually result in participation restriction. They are not allowed to thrive; they are not allowed to engage freely.

What we see especially at community level is a lot of deprivation of the basic rights. Like the right of women and girl with disability to education. The priority of basic rights is very low and in other words non-existent, they would rather train the boy with disability.  Infact, they have not even finished training the girl without disability talk less of the girl with disability, this is the attitude towards WGWDs and it is a challenge.

It doesn’t come up in the scale of preference as a priority as regards to the basic rights of WGWDs to acquire education, this is sad.

 Working in non-profit organization sector,  I have seen that girls are usually hidden and secluded in family compounds and most of  the time going by the findings from the work that we do at FAECARE Foundation, which focuses on women and girls with disabilities, we have to do a lot of individual tracing of these girls to be able to find them.

Another challenge has to do with the sexual reproductive health rights. The thinking that a woman with disability is not a woman first is wrong in every ramification because whether we like it or not, we are women first then we have bodies and we are not asexual. So, women and girls with disabilities have the right to access Sexual Reproductive Health Services: antenatal care, care when pregnant and care after delivery. We have a right to say no when we feel that our bodies are being violated.

This brings me to another challenge of women and girls with disabilities face which is sexual violence, gender-based violence, domestic violence and really this violence even sometimes starts in childhood, where the girl is verbally abused and told every day that you do not matter.  These are some of the challenges that I have seen women and girls with disabilities face in Nigeria.

TQM: After your disability, how did you cope in your family, society and school?

My challenge has more to do genuinely with developing coping strategies and being able to rediscover my purpose in the state I had found myself and re-insert myself back into society as an optimal functional and thriving member of society. That was my focus and has remained my focus for a long time and what that helped me to do was not allow the obvious challenge, be it gender or disability, stop me from developing coping strategies with every different challenge I face in this journey.

My family is very supportive. In my family, the issue of becoming person with disability never came up as a problem to them. It was clear that things would be done differently. I think their ability to cope was also because I decided that I was going to be strong and resilient in the face of the challenges that I had been exposed to.

For the society I initially used to get very upset with the different reactions and opinions people had in their response to me having a disability, but I soon learnt that me getting frustrated or angry was not the solution and that it wouldn’t help me in anyway getting emotional about what other people thought. So, I learned to become emotionally intelligent in handling society’s reaction by simply settling it in myself that everybody is entitled to their own opinion however their opinion doesn’t count or doesn’t necessarily translate to how I should behave or live a full life inspite of Disability. So, anyone can have their opinion on what they think of me being a woman with disability, it does not translate to my purpose and to my existence on this earth. This philosophy has helped me not to get angry at people when they respond negatively either based on ignorance or based on the little information they have. Instead I have found myself as an advocate, here to educate, inform them to know better and do better when it comes to PWDs especially the woman with disability.

As regards being a woman with disability and school, it was interesting.

I tried to go back to school after I had gotten some health interventions but I was told that I can’t go back to the course I was studying; it was devastating but It didn’t stop me from going on to focus on my goal of having a degree. Despite the challenges and difficulties, I went on to have a first degree second class upper in human physiology and then a master’s in human physiology and for good measure another Masters in public health.

When you put your mind to it and God helping you, nothing is impossible.

I believe it is your perspective as a woman with disability that is actually more important. How you see yourself is actually more important than how the society, the family, school or anyone sees you. Because when you learn to love yourself, when you understand that you are here for a purpose and you deserve a full life, it will help you to overcome whatever other people try to do to pull you down.

TQM: Do you think that implementing Nigeria Disability Law will go a long way towards ameliorating challenges faced by PWDs especially WGWDs?

The Prohibition act is a great milestone in the disability Rights movement in Nigeria but its implementation is what is more important than just having a law on paper. it is going to take a lot of political will for that law to be implemented or to take effect, it will also take the cooperation of all clusters and persons with disabilities setting aside selfish interest and differences for that law to work for us. If we do not push together for implementation of the prohibition act, that is, the disability law in Nigeria, it will continue to be a piece of legislation, a nice piece of paper and document.

Having said that, individual persons with disabilities should learn the law because it can be very effective in insisting on one’s right when somebody’s individual rights infringed on. 

So, yes, implementing a Nigerian disability law will go a long way to allow persons with disability flourish in Nigeria.

TQM: What do you think can be done to expedite the implementation of the Act?

Just like I said earlier, persons with disabilities needs to come together, we need to set aside our differences, we need to set aside personal interest and selfish interest we need to work together and raise one strong loud voice to expedite implementation of the act.

TQM: There has been public outcry that PWDs especially WGWDs are not being carried along in the campaign towards curbing the spread of COVID-19, what advice can you proffer to ensure that PWDs are no left out in this campaign?

 I think the issue of most marginalized among persons with disabilities which includes women and girls with disabilities starts from the foundation and lack of existing structures and systems, it is not tied to COVID-19 Pandemic, it has been long in existence. The norm had been that that people who are in the City centres, state capitals and national capital are the ones that usually gain any of the so-called benefits as opposed to persons with disabilities in grassroots areas who actually really need the help.

We need to get our act right. First of all, where is a database of persons with disability in this country at Federal level and state level at local government level, at any level really?  It is not there.

So, who then benefits from any campaigns be it COVID-19 or anyone, group who gets them, usually the same sets of persons with disabilities? Campaign marginalization is not tied to COVID-19, it didn’t start today.

 If the relevant ministries and the agencies responsible for disability affairs at Federal and state levels won’t do what they should do, can’t we get our act together? We have all sorts of SSA on Disability to state governors etc who can insist on the right measures when it comes to persons with Disabilities. It baffles me sometimes.

TQM: Is there any other relevant information you want to share with us?

Relevant to the COVID-19 pandemic I want to say that persons with disabilities should not be careless with the standardized preventive measures.

The virus doesn’t care if you are a person with disability, it is an infection, a viral infection.

 For now, we know how it can be prevented therefore, we cannot and should not act ignorant in not carrying out the preventive measures, so let’s do the needful.

Wash your hands for at least 20 seconds with soap and wash them often.

Have hand sanitizers close to you, this is one of the easiest ways. sanitize your hands and ensure your aid do the same if you can’t do without an aid at this time.

For those of us who use assistive devices; wheelchairs, crutches, white canes, and other forms of assistive devices, sterilize and clean them often.

if you have a caregiver, your caregiver has the responsibility to take care of themselves so that if they too do not expose you.

Finally, Social distancing it is 2 metres, nobody should be up in your space in the name of assistance.

This is our Disability Messaging from FAECARE Foundation

TQM: Talking about your NGO, can you tell me more about your NGO?

FAECARE Foundation remains grateful to be a leading organization for persons with disability especially in the south south region of Nigeria. We will continue in our capacity to advocate for the rights of persons with disabilities, build the capacity of PWDs and empower women and girls with disabilities.

We commend you and thank Qualitative magazine for the opportunity to pass on valuable information via this interview.

You can get information via these medium:

www.faecarefoundation.org

www.facebook.com/org

www.twitter.com/faecare_org

www.insragram.com/faecare

The outspoken Nike Akinbola was born in the mid-70s in Lagos state and was brought up in the same State but her original is traced to Ondo state. This activist with disability was without any form of disability, until 10 months when polio struck.

It was tough for her parents raising her due to her disability but that didn’t deter them so they saw her through education, she started from a special school in Lagos, Surulere (Atundaolu), where her performances were excellent. But then her parents were advised by a doctor to enroll her in a regular school. She was at the top of her class in Airforce Primary School, she later proceeded to the secondary arm of the school, where passed all her papers in SSCE in one sitting.  

She wished to be a lawyer but her parents felt that she can’t cope with facilities available in the University to withstand the rigorous challenges associated to the logistics of studying law in the University. So, she got admission into in Yaba college of Technology (Yabatech) where she acquired HND in Secretarial Administration, she proceeded to (Lagos State University) LASU and acquired a Post Graduate diploma in Management and later she got Masters in Business Administration (MBA)(Finance Option) from (Ladoke Akintola University of Science and Technology) LAUTECH.

Nike had her mandatory youth service in the year 2000 at Govt house, Abia State Umuahia, going by her passion of empowering fellow persons with disabilities (PWDs), she embarked on a community project where she assisted the indigent PWDS & war victims in the state. This effort earned her a Meritorious Award with automatic employment in the state. She got employed and I was working in the Liaison office in Victoria Island, Lagos when she got a call to serve again, the then President Olusegun Obasanjo (GCFR), nominated her alongside Barr. Danlami Basharu to represent PWDs as delegates at the 2005 National political reform conference (Confab2005). It was still in the course of discharging this duty that she received a mail that she has awarded the NYSC Presidential Award 2005 for outstanding service.

Nike Akinbola fondly called ‘Nykson’ by her friends and admirers is now a proud Public Servant and an advocate for the rights of PWDs especially women and Girls with Disabilities (WGWDs) which arise from her experiences and challenges as a woman with disability. She has engaged herself in various humanitarian services and activities to contribute to Nigerians with disabilities having equal rights and access to a better and inspiring life. 

She have held several important position in disability movement such as the Acting Secretary of Spinal Cord Injuries Association of Nigeria (SCAIN) between 2003-2005, a delegate representing PWDs at the National Political Reform Conference in Abuja (CONFAB 2005) where she held the other delegates and the Nation in awe with her presentations on the plights of Nigerians with disabilities and the urgent need to sign the then Disability Bill into law.

In 2010, she embarked on a study tour to Nairobi-Kenya on disability and HIV/AIDS. On her return, she formed an NGO, Alliance for Disability & HIV/AIDS (ADH) to advocate for the sexual health and Rights of Women with disabilities.

In our chat with this lovely wife and a mother of two lovely girls, we discussed the challenges faced by women with disabilities and exclusion of PWDs in the campaign against the spread of COVID-19.

TQM: How did your disability occurred?

I was 10months old when polio struck, I was duly immunized with evidence but with expired polio vaccine. I developed temperature, started convulsing and I was rushed to the hospital where the nurse on duty injected me to calm the convulsing condition, the resultant effect is what I have today

TQM: Growing up as girls with disability, how did you cope with disability in your family, community and school?

It was both tough and challenging. My parents, siblings never treated me specially but growing up as a young girl among my peers was highly stigmatizing. In my school. I had two group of classmates, those who never treated differently and those who never believed that I could be where I am today.

TQM: Be specific, what kind of stigmatization did you face growing up?

It was basically in the area of Nigeria’s educational facilities. I remembered when I gained admission to read computer science, but the school turned me down on the ground that their learning facilities were upstairs and they weren’t willing to make adjustments to suit me.

This continued when I gained admission to read Sociology in Ondo State University, the challenge there was that the distance from hostels & lecture centers were very far so there was no way I can cope.

So, when I eventually got admitted to Yabatech, I decided to take the bull by the horn when same challenge arose. I insisted I will use the staircase to access the lecture centers but then I was told that the hostels were for foreign & final students. So, I walked up to the office of the dean for student affairs and made a case for students with disabilities (SWDs) argued that SWDs should be the first to considered in the allocation of hostel facilities. It was tough but eventually they saw good reason to my argument and I was asked to choose a room and hostel of my choice. I was there until I graduated. That singular advocacy opened way for other students with disabilities have rooms allocated to them and in where they prefer.

TQM: We are aware that you have an NGO, can you tell us name and objectives of the NGO?

My NGO is Alliance for Disability and HIV(ADH). I founded the NGO to advocate for sexual health and right of PWDs especially WGWDs and also to ensure Inclusive HIV/AIDs/STDs Campaign.

TQM: In brief what are the achievements of your NGO?

Awareness has been created that PWDs are more vulnerable to STDs and as such should be carried along in treatment facilities rather than discriminated/stigmatized. Through our intervention, NACA in collaboration with Positive Action for Treatment of AIDs (PATA) is developing disability friendly HIV/AIDS services.

TQM: As an advocate and experienced woman with disability, can you take us through the challenges faced by WGWDs in Nigeria?

Being a woman in a patriarchal society like ours is challenging, now being a woman with one form of disability or the other in same society is double jeopardy. As a woman with a disability, our economic status is way off it, poverty is associated with disabilities. Without a viable economic status, we are discretely silenced even in the family, having to depend on another to make a decision on how you want to live your life. Accessing our health care facilities is a tall dream for most of us, and even when u succeed in that, attitudinal and emotional stigmatization shows its ugly face.

How many WWDs are included in the affirmative action campaign for women, no equal playing ground for us in the political sphere. Even, against all odds when we struggle to get there, society still don’t believe we can do it.

TQM: There is a saying that WGWDs suffer most when it comes to Gender Based Violence (GBV), is it true and if it is true, please tell us more about it?

Absolutely yes.  WGWDs are the worst affected when it comes to GBV, owing to the fact that most of us depend either on our caregivers or intimate partners to survive or carry out our daily routine.

It is either you comply or you are abandoned to your fate.

Let me give u a scenario, imagine a girl with psychosocial disorder or a quadriplegia who depends either on family to help her through puberty or adolescent stage of  her life, a caregiver/ family decides that to save them from unending stress of cleaning up the girl monthly opted for removal of the lining of the womb to stop the monthly flow (endometrial ablation) without considering the future of the girl. Or even tricking a blind girl into FGM.

A woman with a physical disability being denied access to her mobility aid as a form of punishment for not granting her spouses’ monetary or otherwise request. Many more that WGWDs go through and the society see nothing wrong with it but that we should rather keep quiet and be grateful that we even have someone to ‘accept’us.

TQM: What are the challenges WGWDs are facing when it comes to SHR?

Numerous which I will categorize into:

Attitudinal: Negatives and Wrong mindsets that WGWDs should not have any business going into relationship nor getting pregnant.

Environmental: Inaccessible nature of our health facilities and services such as the presence of staircases and lack of ramps/rails.

Communication: Lack of sign language interpreters, disability inclusive trained healthcare providers

Economic: Lack/ inadequate financial empowerment to meet their needs

TQM: What is your take when it comes to relationship with emphasis on WGWDs?

Simply put, WGWDs are not asexual. We are sexual beings too, ready to give & receive love. Our sexuality isn’t determined by our disability.

TQM: As an activist speaking for PWDs especially WGWDs, what is your advice towards ameliorating these challenges?

Building and implementing an inclusive society is key. Like the developed countries, what makes a difference for them is that they built an enabling environment for all irrespective of disability or ability.

TQM: As an activist, what is your strong message to WGWDs, the public and government?

To WGWDs, my message is don’t give anyone reason(s) to talk you down. You are first a human being, then a woman/girl before the disability set in. Take your stand against discrimination/stigmatization. Speak out whenever you feel abused, don’t stay in an abusive relationship because of what the society will think of you. People must talk, don’t mind them, do what is right for you.

To the public and government, please remember that disability doesn’t respect anybody, if it doesn’t happen now, it may happen later. Stop the discrimination, do away with all form of stigmatization and emotional blackmail.

State actors and our lawmakers please should see to the implementation of Nigeria Disability Act, 2018

TQM: Do you think that implementation of Nigeria Disability Act will go a long way towards ameliorating the challenges faced by PWDs especially WGWDs?

Yes, because it is all encompassing and justiciable

TQM: There has been public outcry that PWDs are not carried along in the campaign towards curbing the spread of COVID-19, what advice can you proffer to ensure that PWDs are not left out of the campaign?

COVID-19 came as a rude shock to the whole world and it is sad that with all the campaign on the various media and social media platforms, none of them is inclusive of PWDs in Nigeria.

WGWDs are more vulnerable, more at risk to this pandemic. We go to market, to work, attend to the home front yet no enough information to guide us on how to protect ourselves or even access facilities for services, if need be. My prayer is that none of us will be victim of this pandemic, but please let’s help ourselves by staying at home, stay isolated from people, stay safe & observe basic hygiene. If you have to purchase basic needs for the home, please get someone to help you out, it may cost you more but you are better safe at home.

TQM: Any other relevant information you wish to share?

I read on the facebook wall of a senior colleague/friend that an arm of govt of the country she’ is presently residing in called to ask what basic necessities she will be needing during the Covid-19 stay back at home period. That’s awesome, right? Will it be too much to ask from our Ministry of humanitarian affairs, Disaster Management and Social development to reach out to Persons with disabilities timely and provide for them. Just my thought.

TQM: Your Parting Words if any?

None of us knows what tomorrow holds in stock for us, so let’s be emphatic and loving to the less privileged around us. Implementing the Nigeria Disability Act (NDA) 2018 with the establishment of the assisting commission as the act stipulated will not bring a loss to the Nigerian government but rather build a better tomorrow for us all. Let’s do the Right!