ECW Interviews Youth Refugee Advocate Nujeen Mustafa

Nujeen Mustafa is a Syrian refugee, youth advocate and champion for children with disabilities for the UN Refugee Agency.

At just sixteen years old, Nujeen Mustafa made the 3,500-mile journey from Syria to Germany in a steel wheelchair. Nujeen was born with cerebral palsy and spent the majority of her life confined to her apartment in Aleppo, Syria, where she taught herself English watching shows on TV.

As war broke out, she and her family were forced to flee – first to her native Kobane, then to Turkey. Her family didn’t have enough money for them all to make it to safety in Germany, where her brother lived, so her parents stayed in Turkey while she set out with her sister across the Mediterranean, braving inconceivable odds for the chance to have a normal life and an education.

Nujeen’s optimism and defiance when confronting all of her challenges have propelled this young refugee from Syria into the spotlight as the human face of an increasingly dehumanized crisis. Since moving to Germany, Nujeen has continued to tell her remarkable story and to capture the hearts of all who hear her speak.

ECW: Your story of triumph over struggle has inspired people around the world. Can you tell us a little bit about what it was like growing up as a girl not able to go to school in Aleppo, Syria, and how you worked to ensure you got an education?  

Nujeen Mustafa: Growing up and not being able to go to school, I realized pretty early on that my life was unusual – but I kind of wanted to do the best with what I had. I mostly noticed it when the kids in the building would go and I wouldn’t, but I was surrounded by a very supportive environment that just made it so easy to live with the fact that there was something missing in the routine of my life.

When I turned about 6 or 7, my older sister taught me how to read and write in Arabic and then it was left up to me to practice. This was when I kind of used television as a way of educating myself and learning how to read and write. Then these mechanisms evolved and the things I wanted to learn also evolved, so I moved on to other things with English – a bit of general knowledge, and a bit of background in every subject and topic that I could find. Of course, my sisters also brought me the schoolbooks for each year when I was growing up. I would finish them in one day because I turned out to be such a bookworm! From then on, when I was old enough to start being self-taught, I just did it.

Of course, I still recognize it was not fair that I was not able to go to school but, as I said, I tried to do the best with what I had. I think this was my way of defying the circumstances that I was in, and it kind of gave birth to this desire to prove myself and prove that I can overcome all these obstacles, even if they are hard. To this day, I think one of my most fundamental traits is the desire to prove that I can do things and that I can accomplish a lot of things that are not expected of me.

ECW: Today, 75 million children and youth caught in emergencies and protracted crises are not able to go to school. Education Cannot Wait and its partners are working to get them back to learning. Why do you think this is so important, particularly for perhaps the most vulnerable: refugee girls with disabilities?

Nujeen Mustafa: I found this question quite strange because it shouldn’t even be a question as to “why” we should educate our children. It just has to be a fact of life, because everyone should know “why.” Children are always emphasized as the future of their countries and communities. But when you do not invest in a portion of the population, which is the population that has a disability, this is just not right. This is a violation of your rights as a human being, your right to education. It is discriminating against you on the basis of your disability, if you don’t get an education. It’s very unfair treatment of young people – of people who should be planning and thinking out the future.

There have been a lot of pledges and resolutions about the importance of education, especially for young people and people with disabilities. To live in this kind of cognitive dissonance, where there is this acknowledgment that this is important and yet there is nothing being done to carry it out, is very concerning. We can all agree that it has very dire consequences on our society and even the living standards of any country.

Education of the public and of youth are factors in all of these things. A prosperous and educated youth means a prosperous and thriving country. There is no logical reason as to why any country would want to ignore its children, its youth, and people with disabilities. It’s really disturbing that I even have to say that. They are not a burden on anybody. They can contribute and they are this kind of untapped treasure, untapped resource, that is not being used sufficiently.

From a human rights point of view, no one has the right to discriminate against you on the basis of something that you have no control over. You don’t make a choice to be born with a disability just as you don’t make a choice to be of a certain ethnicity. So even from that point of view, there is no logical reason as to why this should be happening.

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ECW: What key message(s) do you have for world leaders about the urgent, important need to address and fund education for refugees and for children with disabilities in emergency and protracted crises settings?

Nujeen Mustafa: I think the most important thing for decision makers to know is that education needs to always be a priority, even in emergency situations and crisis response. It is not enough to ensure basic living conditions for survivors of conflict or people who are now living through a pandemic. There needs to be an awareness that the future of the entire generation is on the line and their need for an education needs to be prioritized. I know that it can be overwhelming at times, but I think that education needs to be viewed and seen as something as essential and crucial to the well-being of everyone – especially people with disabilities – as providing shelter, food, or water. It needs to be prioritized in emergency situations, whatever they may be. There needs to be an acknowledgement of the vitality of education to their futures and to their lives.

Of course, the situation with COVID-19 is unprecedented in this century, but we should have been better equipped to deal with such an unexpected change in our daily routines and such disruptions in our lives. That just goes back to the point of making sure that education is accessible to all and that everyone, wherever they may be and whatever their circumstances may be, has access to it and is able to smoothly transition from one mode of education to the other. It should have been essential everywhere around the world. We see that countries with a colder climate (where some children are unable to attend school during the winter months) are much better equipped, already having this kind of digital form of attending lessons and school. So, I think that countries all around the world should strive to be on that same level, ready and prepared for any kind of unprecedented situation.

When it comes to people who have fled conflict regions, refugees, and refugees with disabilities, it is not enough to make sure that they survive, but that they live and thrive as individuals. Receiving an education is a building block of that. You can’t say that you are doing them right if you don’t provide them with access to education as soon as possible. Prioritize education as a part of the essential means of survival – prioritize it in every plan of action.

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ECW: You wrote an inspiring, best-selling book about your amazing journey: Nujeen: One Girl’s Incredible Journey from War-Torn Syria in a Wheelchair. Could you tell us the three books that have influenced you the most personally and/or in your current studies, and why you’d recommend them for other people to read?

Nujeen Mustafa: One of them is The Time Keeper by one of my favorite authors, Mitch Albom. It tells a story of the first person to measure time. It comments on humanity’s obsession with time, being late, and having clocks all over your environment. People have forgotten to enjoy their lives and actually live them because they’ve become obsessed with time; everyone wants to get everything on time and not be late, to the point where we have forgotten how to enjoy living in the moment. There is a quote that is very inspiring and memorable for me, which is, “when you are measuring time, you are not living it.” It’s a very inspiring and soulful book about enjoying the moment, truly experiencing it, and not being worried about whether you are late or too early. As we see in nature, only humans measure time. Nature and animals are not plagued by worries about being late to the meeting, or being too early, or what the social standard is.

The second one would have to be 1984 by George Orwell… We see it in the way that our phones watch us and how essential they have become to our lives. Even I am guilty of it. I spend my day on an iPad. But there is this voice nagging in the back of my head for my life not to turn into 1984 – using technology in that sense and giving everyone access to my thoughts. Every time we Google Search, there is some kind of record of the question that we thought about at that moment, so I think it’s very unsettling but it is necessary in this day and age.

The third one, a fairly recent read, is Man’s Search for Meaning by Viktor Frankl. That book is just a must-read for everyone about perseverance and resilience… even in the most dire and horrifying circumstances. That you could still maintain your humanity, even in a concentration camp. It tells of a lot of horrible, horrifying things and the lengths that we humans can go to. But it was also a message of hope that we could thrive and rise above all that and become better people because of it. So, I think it appeals to me because it essentially says that we are stronger than we thought – even in the most unimaginable, horrifying, terrible circumstances, we can be better and we don’t have to succumb to the desperation and the helplessness. It also talks a good deal about grief and how you can emerge as a stronger person from it; how suffering is also a part of life and that it initiates a part of you and builds you as a person. Your response to it is so crucial. Its essential message, I think, is that there is still hope for humanity. You’re a human being, even in situations of genocide. There are still heroes out there who have lived through it and survived. Not only physically – but emotionally and morally and every other sense of the word. And I just thought that that was inspiring. I think everyone should read it because it gives a message of silver lining, of hope, and just that you can be that person that overcomes these challenges.

ECW: What were the common misconceptions about children with disabilities that you faced as you were growing up?

Nujeen Mustafa: The fifth question is just my favorite. I love to talk about this aspect of having a disability because, where I grew up, disability meant that you were expected to just live on the sidelines and not grow at all as a person – be it academically or personally. I absolutely despised meeting people for the first time because there would be a recount of how I was born and how it was discovered that I had a disability. And then I would see the looks of just people feeling sorry because they thought that I would have no future and no life. That I would just be there, not being an active member of society or contributing anything to my family or to anyone. Just be someone that wouldn’t be of use to anybody. So, I think the misconception that people may have is that we are expected to play into these expectations and act as though we were doomed – but that, of course, is not the case.

I recognize and realize that it depends on the mentality that your first caregivers and family has, and my family was absolutely adamant about me receiving and having what they had. And being as equal to them as possible. I would be hammered on to do homework and learn how to read and write and advance my education and learn English… Of course, I did it on my own, later on, in my teenage years. But there was always pressure to learn a lot about math and to enrich myself intellectually. Even if I couldn’t do it physically. Of course, many of these children didn’t have this kind of supportive and encouraging environment. How society perceived them might have damaged their sense of self and made them very insecure and have a low self-esteem. I consider myself lucky that I grew up in a family that pushed me to be better – that didn’t view me as a kind of a nuisance or as a girl who didn’t have any potential.

So, I think the biggest misconception that society has of these people is that it expects us not to have any ambitions or dreams. That the mere fact of us having a disability should eradicate any glimmer of hope inside of us that these dreams might come true. I encountered that even on my journey here. I would meet people who would be surprised that I spoke English or that I was socially active – and, you know, not at all awkward or hiding from anyone. Even when I was younger, I limited my exposure to that kind of negativity. I just surrounded myself with mostly adults and people who loved me and appreciated me for who I am. And I think that helped. I kind of eliminated any possible person that I thought, okay, this person doesn’t really like me, he is just pitying me or looking at me in a very condescending way. The secret to that was that we, as a collective family and everyone around, were able to kind of stay away from that type of negativity and that kind of mentality that “okay, this person has a disability, so he is useless—he or she is useless.”

ECW: From your own experience, what does inclusive education mean to you and what makes a school accessible for all boys and girls with disabilities?

Nujeen Mustafa: Inclusive education, for me, has a lot of meanings. I only experienced it when I arrived here in Germany and realized how smooth and easy it can be to make education inclusive. Of course, inclusive education means not just enrolling someone with a disability in a school, it’s about accommodating their needs without making them feel isolated or separated or something different than the other students who may not have a disability. It’s not just about making the restroom or making the building accessible, it’s about capacity building.

For example – I always laugh and find it very encouraging and impressive about what I experience here – there is nothing that I do, or that I go through, that people my age do differently. I’m also applying for apprenticeships, filling out applications, filling out paperwork, and working in accountancy. I study business, that’s what we do. And I don’t think that the experience of a person who doesn’t have a disability differs so much from mine. There’s no discrepancy—there’s no, “this level is for you and this level is for that person.” It’s more about accommodating your needs and making sure that you have full access to whatever you may encounter in your professional life and you are well-versed in whatever it is that you are trying to specialize in. I would say that I have the same amount of experience in business as anyone in the same grade, or level, as I am now. So, having a disability, they wouldn’t level it down for someone who is disabled. They would accommodate your needs in such a way that you get the full content and that you grasp everything that is needed of you and that you learn about.

That, for me, is what inclusiveness means. It’s about finding methods that would make your working environment better—and equal to your non-disabled peers. It’s about making sure that you receive the same kind of treatment and that you understand the same curriculum. That your needs are accommodated. For example, if somebody’s disability is in speech, there would be all kinds of assistance to him or her, using iPads or specific programs on their PCs, and it’s very encouraging because we know – I personally know – that nobody is dumbing stuff down for me to grasp and nobody’s going a level down just to teach me about it. I know that I would be as equally qualified to a co-worker that is not disabled. So, this, for me, is what inclusive education means. It’s about accommodating the needs of a person with a disability so that it’s integrated into a non-disabled structure or a curriculum that might not originally be for people with disabilities.

For me, the key point is not isolation—I don’t want to be taught separately—it’s about the merging of education, ideas, and concepts, so that everyone can benefit and absorb information equally and effectively. And that would be the main goal – the optimal option – for everyone, just to merge these ideas and methods so that every school in the world can and would receive a person with disability.

I also think that integrating people with disabilities into schools with people who have no disability is essential in changing any misconceptions that non-disabled people might have about people with disabilities. Because exposure lets you know how that person lives. You’ll know that he’s not pathetic, he doesn’t want you pity. You learn that he’s just like you—he or she is ambitious, is working on his plans, has career plans, has dreams he wants to achieve, and that he can be independent. He or she can have fun and dance and do stuff. And they will go far in life.