She's a U.N. disability advocate who won't see her own blindness as a disability

Years ago, when some family and community members learned that young Gertrude Oforiwa Fefoame was losing her vision, they lamented, "How will you be anything in the future? Oh my Lord, is this the end for you?"

It was not.

This year, Fefoame, now age 65, became the chair of the United Nations Committee on the Rights of Persons with Disabilities (CRPD), a group that protects and advocates for the rights of people with disabilities. A citizen of Ghana, she's the first African woman to hold the position and has spent her career serving this community. Earlier, as a member of the CRPD, she helped get more women elected to the committee and revived a working group on women and girls with disabilities.

Alongside her work for the U.N., Fefoame's main role is global advocacy manager at Sightsavers, an international organization that strives to eliminate avoidable blindness and promote the rights of those with disabilities. She also serves as the Africa president of the International Council of People with Visual Impairment, is an adviser to the World Council of Churches Commission on World Mission and Evangelism, and has been involved with the World Blind Union.

NPR spoke with Fefoame to discuss her life, career and passion for working with women and girls with disabilities. The following interview has been edited for length and clarity.

Can you share a little about your own disability?

I am a person with a visual impairment. Today I am totally blind, which resulted from a progressive condition called retinal dystrophy.

It started at the age of ten when I began using reading glasses. By the age of 14, no reading glasses could help me. I was in a mainstream classroom through secondary school with very little support.

Here I was, unable to read from a blackboard or textbook. And the majority of my teachers would ignore me. They wouldn't tell me what they'd written on the board so I couldn't follow along. I had to rely on friends who would explain things to me later. In class, I was made to feel like I didn't matter. Most people didn't pay attention to me. That was my painful time.

Finally, I went to a School for the Blind to learn how to read and write Braille.

As you were losing your vision, how did you feel? How did other friends and family react?

Early on, I didn't have a clear understanding of what I was losing and what the future had in store.

But my family was very supportive. I was ten years old the day I came home and said I could not read from the blackboard. That was a Friday. By Monday, I was already at the hospital. A different family member would accompany me to every medical visit I had. The doctors were looking to see if I had a condition that could be treated. We didn't know at the time that those visits were futile. Eventually, I grew to a point where I could go to the hospital by myself. So my family support was strong.

But stigma continued to affect me. One afternoon when I was at the School for the Blind, I came to the entrance gate and saw some community members and extended family of mine. And so they asked me, "Why are you here?" And I told them I was enrolled at the school. Their negative reaction was awful, disappointing and frustrating.

What did they say to you?

They said that I'd been a very smart gal and had shown so much promise. But they were all lamenting that I was now a failure because I was enrolled at this school. They told me, "We knew you had an eye defect, but we never knew it was going to be this bad."

I hadn't thought of myself as a misfit or that the end had come. But they drew my attention to those negative ideas. And that discrimination was a big blow for me.

On that day, their comments made me feel I was different and less than I was before. That I was missing out on something and I was no longer myself. It kept me crying for days. There was even a moment when I thought about killing myself.

But in the middle of this, a lady about my age who was totally blind came to see me from the Presbyterian College of Education, a mainstream school that was admitting students with visual impairments. Her name was Grace Preko and she was training to become a teacher. At that time, I could still see a bit. So I could see her. I saw how beautiful she was, how well dressed, everything about her. That conversation, that interaction was very meaningful to me. And I said in my heart, "I have a future."

A year later, I moved from the School for the Blind to join her institution. And from there I built my confidence and my career. Meeting Grace that day was what energized me. And that fire has never left me.

There are different kinds of fire. Say more about the one that burns inside of you.

My fire makes me fight for education, awareness, and mentoring. It makes me a role model as someone who has broken barriers to have a better life.

Whatever opportunity has come my way to serve people with disabilities generally, and women and girls with disabilities in particular — I never let it pass me by. I work to make life better for these individuals and for humanity as a whole.

That fire made me decide to be a member of the U.N.'s CRPD [Committee on the Rights of Persons with Disabilities]. It's a volunteer role, but it's very demanding.

That fire made me want to run for the chair of the committee to lead that group. I wanted to harmonize divisions, listen and humble myself.

Women with disabilities must be at the table to be part of the decision making and part of implementation. Without their voices, we are losing out. We need more women leaders.

So it's a fire that never stops burning. It started slowly at age 17 and it's grown until today.

How do you define disability?

It is not the presence of the impairment, but it is the social and attitudinal barriers that are hindering our performance.

And what we want is for those barriers to be removed so that a person with any kind of impairment can perform at the same level as anybody else.

You're saying that the disability is not the person, but it's the structures in our world that impede certain individuals with respect to others.

Yes. Disability is not an issue. And so we should stop making it an issue. Rather, we should embrace it as a kind of diversity.

Some people are tall and others are short. Some people are Black and others are white. Some people are loud and some are soft.

Similarly, some people can see and others cannot. Some people can walk and others need support or a wheelchair. Disability is another kind of diversity of humanity.

What's your top wish for the world to recognize people with disabilities?

My top wish is for the world to understand and appreciate that persons with disabilities — and for that matter, women and girls with disabilities — are first and foremost people. We are not a separate entity of humanity to be forgotten or feared.

When those with disabilities are ignored or neglected or discriminated against or denied their rightful place in any sphere of life, the world is losing out. So we need to be paid attention to.

Why do you think it's important to focus on women and girls when it comes to disability? Why not everyone?

It's because of the intersecting forms of discrimination that we face. Women are marginalized. Persons with disabilities are also marginalized. So when you are a woman with a disability or a girl with a disability, you are double marginalized. You are likely to be less educated. You are likely to have less access to health services. We face violence and sexual abuse. And we are less often at the decision-making tables. It's even worse for those of us in developing countries. That is why I'm advocating for these women and girls.

The issues of disability and of women and girls must be part of any initiative put forward by states, agencies, civil societies, and even families. We have a role to play not only on matters of disability but on human rights and development as a whole.

Usually, women and girls with disabilities are not consulted and their voices are missing within the disability movement and beyond.

What's been your best experience as it relates to disability?

I think my best time was the day my firstborn — my daughter — was named.

It's quite common for many women with disabilities to be impregnated by men who will not own up or who may own up but will not marry them to have a home together.

So when I found myself as a mother with a reliable husband and having a baby in my arms, and we were together at the naming ceremony feeling proud and surrounded by people celebrating with us, I didn't recognize my disability any longer. It was there, but it didn't matter because this man had never been ashamed of having a wife with a disability. He's been supportive of every bit of my journey since we met.

This is something that most women with disabilities do not enjoy in many parts of the world.

How many children do you have?

I have three daughters. My first daughter, Eugenia Nibie, is a petroleum geologist in Ghana. She has a daughter and is married. My second daughter, Eunice Deide, works with Republic Bank in Ghana. She's also married and has a son. And my little daughter, Euget Zevi, is based in the U.S., is married, has a son and works as a manager with Whirlpool.

So these are my three daughters — well-settled, beautiful, with homes and families and very proud of their mother.

For instance, in Ghana, boarding schools are very popular. Some parents with disabilities have children who don't want them to visit the school. But not my daughters. When they were in school, they didn't hide their mom away. They brought their friends to come and meet me. That was very inspiring.

As grownups, they've become advocates as well. When Zevi was in college, for example, she chose to work at an agency that helps provide employment services to persons with disabilities. My daughters also travel with me on work trips to support me and make me feel well and good.

As the newly elected chair of the UN Committee on the Rights of Persons with Disabilities (CRPD), what do you hope to achieve?

It's only a two-year term, so it isn't too long of a time. But:

In addition to strengthening the participation of women and girls with disabilities on the committee, I want to bring attention to minority groups within our community. There are those who still don't sit at the table fully, including people with autism and cerebral palsy.

There are also those with invisible disabilities who don't have a voice like people with leprosy, who are deaf-blind and who have many forms of psychosocial, intellectual or developmental disability. We need to address all of their issues.

We need to intensify our work around inclusion so that other U.N. bodies will take it on or strengthen what they're already doing.

That's because it's important that the United Nations set a good example of improving accessibility and asserting that reasonable accommodation for those with disabilities is on the human rights agenda and taken seriously.

My predecessor, Rosemary Kayess from Australia, started this. Her predecessor, Danlami Basharu from Nigeria, worked on it as well. And I will continue that work.

What would you tell your young self now?

Disability is not an inability. And being a female does not make you less of a person. Be yourself, get engaged, study hard. Join your peers with disabilities but also join your peers without disability. Do not relent in your efforts even though it gets frustrating when the change we want comes slowly. The sky is your limit so be determined and know what you want to achieve.

If you or someone you know is in an emotional crisis, reach out to the National Suicide & Crisis Lifeline by dialing or texting 988.

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