An Interview with the Nazli el Leithy
In 2020, a social revolution began to transpire in Egypt when Nazli El Leithy challenged the status quo by opening up the conversation about disability in Egypt. She created a platform called “A Different Story by Nazli”, through which she shares facts to promote a more coherent understanding of disabilities and promote acceptance of people who are different. What Nazli is doing is disseminating information so everyone can gain a better understanding of different types of disabilities while also providing examples of best practices and ways that each individual can play a role in creating a better and more equal world.
I had the honor of having a one-to-one chat with Nazli for her to provide an overview of persons with disabilities in Egypt, her work, and the steps that should be taken to ensure that persons with disabilities have better life opportunities.
Rana: To start, Nazli can you give me a brief bio about yourself?
Nazli: I started in the corporate world, my background is in Business. I did my Bachelor’s in London at King’s College London and I completed my Master’s in Management and Governance from the London School of Economics and Political Science. I then moved back to Cairo and worked at PricewaterhouseCoopers for two years and a half. While I was working there, I started part-timing at a center called the Effective Learning Foundation (ELF), which works with children with special needs and disabilities, mainly because I always had that interest and wanted to explore it further, especially that I knew that the corporate world wasn’t for me.
Through my part-time work at the center under the mentorship of Dalia El Chourbagui, I gained some experience in the Learning Skills Development department. By observing therapy sessions and being trained to implement various programs and interventions, my passion for supporting children with special educational needs was solidified. However, to be able to enter the field ethically and to be permitted to be in direct contact with these children, I went on to do my Master’s in Special Education at University College London. While completing my studies, I launched “A Different Story by Nazli,” an online platform that promotes special educational needs and disability awareness by sharing facts and content about neurological differences. We tend to forget that everyone has a different story to share – a different life, a different challenge. Story-telling helps us all highlight these differences and it can have incredible impacts on how we change our attitudes and mindsets. The platform is a safe outlet for anyone involved in the field to share their story; whether that is a parent, child, or adult with a disability, teacher, or working professional. By doing so, the platform hopes to break social stigma as well as encourage dialogues and important conversations about disability, with the ultimate goal of ‘unboxing’ people’s thinking and changing attitudes and perceptions.
I graduated a year ago since then I have returned to ELF now with the qualification to be in contact with these children properly. I work with children with autism, mainly, as well as children with dyslexia, ADHD, and developmental delay. And now I also work as a specialist as part of the Elementary School learning support services division at Cairo American College.
R: What are the ages you work with?
N: At the center, I work with children aged between 4 to 10 and at the school from 6 to10, which are grades 1 to 4.
R: Is disability the right terminology?
N: Yes. There is yet to be a universal acceptance of using that word because some people think it’s a bad word and find it offensive. However, in reality, we are the ones that have constructed that perception. Either consciously or unconsciously, when we hear the word ‘disability’ we immediately put that person in a box and place a limit on their capabilities. We forget though that we give words their power. Disability doesn’t need to be such a scary stigmatizing word. We can transform it. Similarly, there is some ongoing controversy around the word ‘special needs.
While some children or individuals don’t mind being labeled as special needs, others find it wrong to label someone as ‘special’ as it puts them in a different category from the rest of the population. I just want to emphasize that just because someone has a specific condition, learns, or experiences the world in different ways doesn’t mean that their disability is their only feature. I see disability the same way I see someone who can’t see well and needs to wear glasses, just like someone who cannot breathe without an inhaler because they have asthma. It is just something; it isn’t something part that is part of their identity. My identity as my name comes first, disability is an attachment, but it does not define why I need special treatment. So disability is the correct term. Differently-abled, on the other hand, is not. You can also say special educational needs, which is different from special needs.
R: Do you think it’s reasonable to group all disabilities under the term disability?
N: I think so. Under disability, I do agree that there are different kinds of disabilities such as physical disability or cognitive disability but I think the umbrella term is still disability. I also don’t like to focus so much on categories and labeling. Each person, whether with a disability or not, has their own sets of strengths and areas of weakness that make them who they are.
R: You’re talking about that it shouldn’t be part of their identity but by terming them as a disability on its own, does it take away from their own respective identities?
N: Unfortunately, to the majority of our global community, having a disability is very stigmatized. Society perceives them differently and puts a threshold on their ability. Those who are educated and are eager to learn more about disability will know it’s just a different way of experiencing the world. I acknowledge that we do need the labels sometimes to give them the accommodations that they need and to be able to tailor their environment to support their performance. That’s how we give rise to an inclusive environment with equal opportunity.
We need to draw attention to the fact that there are different people in the audience, that there are different people in the classroom, and that you need to account for all learners. But the general population in Egypt doesn’t look at it that way. They look at it as “oh yes, he has a disability, let us sideline him, he won’t participate or contribute effectively nor efficiently to society because he has something that we don’t understand therefore we can’t help him.” Anyway, to answer your question, disability should not be the identity. That is not what defines them. But at the same time, there’s nothing wrong with it. It is just someone that needs something else.
Also, a big problem with identity and disability is that there’s a tendency to look at disability as something that needs to be treated when it isn’t. The purpose of centers or special schools is not to give some sort of ‘cure’ whatsoever. The purpose is to give families and children the strategies to manage and navigate their world but not because they’re sick. This very medical perspective and fixation on disability as an illness are global, not just in Egypt.
R: Can you acquire a disability after you are born, besides physical disabilities, such as autism?
N: There’s something called acquired autism that can happen at the age of 18 months. For a very long time, until the child is 1 year and a half, they may babble, say single words, imitate phrases, and then suddenly a lot of parents complain that their child stops responding to them and doesn’t socially interact nor communicate. There isn’t enough research that says what the cause of this is but a lot of people say that it could be vaccinations or other environmental factors.
However, a lot of people mistake that autism can be acquired when kids are 5 years old for example. It’s important to know though that that’s not what’s happening. You are born with autism, it’s hereditary, and is a lifelong condition. However, the characteristics are likely to show more and more when the child begins to be placed in settings where they need to interact with others, expand their interests, or when they are in an academic environment.
Another thing that you can acquire is a cognitive delay and that is what happened to my uncle. When he was 3, he got meningitis and because it wasn’t properly treated by the doctor, it caused brain stagnation. With ADHD, you’re born with it. With dyslexia, you are also born with it and there are a lot of twin studies that show that genetics play a role.
R: So, sometimes you don’t know whether you have a disability until later on in your life have to use that part that you hadn’t used before. What if you’ve never been put in that situation, you can never know.
N: Yeah, it’s like ADHD. If you think of all of the traits with ADHD it’s attention deficit and hyperactivity, all the things that can be present in a 2-year-old that is just jumping around everywhere with high energy. Even in school, we can say that all kids have ADHD because they’re extremely hyperactive so you can’t say for sure until it starts to affect their academic performance and that only starts in the ages of 4,5,6 so 6 that’s later, a bit late. It depends on your environment.
R: Have you worked with disabilities in another place besides Egypt?
N: I worked very briefly in the UK in a school just for children with autism. It was a special school and that was tough because they were all non-verbal with very severe needs. I learned a lot from that short experience.
R: Can you tell me the differences, if there are any, between working at the school and working here in Egypt?
N: There they have a much better understanding of technology deployment and they are lucky to have so many resources at their disposal. Planning-wise, they have so much space and take into consideration that children need breaks in a sensory or breakout room almost every 20 minutes. If a child is having a meltdown or is on the verge of being deregulated, they are conditioned to take a break whenever they want. They have this system where they exchange tokens to communicate what they need through something called a picture exchange system. It’s a very fluid system that I haven’t seen implemented well enough in Egypt yet.
It’s different though because, in a special school, they don’t feel that they are different from one another as much as they might in a mainstream school. In mainstream schools, they may stand out, especially when they are pulled out of class a lot to get the support that they need. It attracts a lot of attention and that leads to a lot of bullying or leads to a lot of questions. It’s hard because you’re trying to be inclusive but you’re also excluding. At the center, I see them outside their wider community and their world of interaction with other members of the community. It’s easier to handle. But seeing them ostracised at school or in other social settings is tough when they’re made to feel like they don’t belong all the time.
R: So it’s not an easy decision to make whether to enroll a disabled child in a special school or a mainstream school.
N: I think that the ideal scenario is that there not be a distinction between teachers on one end and special education teachers on the other. I don’t even think my degree should exist, to be honest! I think that teachers from the beginning need to have taken courses or modules in special needs and disability. They need to know how to teach all children. If you address that problem and if you address the curriculum issue, which in Egypt is a problem because it’s all based on memorization, is very rigid, and lacks multi-sensory components, you would be transforming lives.
But currently, the curriculum has no flexibility or creativity. Also, the training of the teachers and the overall environment needs significant work. You’d be surprised at the number of schools that don’t take into account accessibility for a wheelchair or other forms of accessibility. A lot of things, if tackled, would allow us to not even need to question whether we should place children in a special or mainstream school.
R: Can you tell me about the conditions for children with disabilities in Egypt?
N: This is also a problem. Usually, the ones that can get the support are the ones that can afford it. It’s a very expensive service. I don’t necessarily agree with the affordability of it and, unfortunately, only a specific tier in society can access these services.
R: Have any of the parents you’ve met ever tell you that they are migrating?
N: Yeah, and a lot do.
R: Where do they go?
N: The States.
R: How many would you say?
N: 1 out of 15 as it’s very expensive.
R: Do you know about the conditions of refugees with disabilities?
N: There is still so much that can be done for refugees in general. But with regards to disabilities, Humanity & Inclusion focuses on promoting access to services for people with disabilities and empowering people with disabilities and their organizations (OPDs or DPOs) to advocate for the enforcement of their rights. I have also heard of a foundation in Assiut that provides therapy in kind, specifically for refugees with disabilities.
R: So in Cairo, it’s focused on the people that can afford these services, would you say that as a fact.
N: Yes, 100%. Someone asked me the other day that they want to volunteer for a foundation for children with special needs that come from different socioeconomic statuses and I literally couldn’t recommend a single place with complete certitude and confidence.
R: What are the overall challenges for persons with disabilities?
N: On a very personal level, they are faced with significant judgment. This judgment then leads to a lack of employment opportunity, schooling opportunity, and social participation. Secondly, they face an infrastructure problem. In Egypt, we’re not designed to cater to those with disabilities and when we do, it’s an exception and not the norm. Lastly, access to quality services and therapy is still very much an area of needed improvement.
R: In your opinion, what policies should be put in place to overcome these challenges?
N: I would say there needs to be a nationwide complete radicalization of the curriculum. This is a huge problem; they are not getting an education because they won’t be able to keep up with the curriculum. There should be a nationwide campaign through which we can completely radicalize the national curriculum. With curriculums in international private schools, this can be done easily through collective efforts to brainstorm more creative and more tactile approaches to learning. For example, there is a school in the UK in which all they do is base their curriculum on learning through play, social experiences, and field trips. On the employment front, we already have a 5% employment quota that is enforced on private companies.
However, what ends up happening is that employers pay these individuals their salaries but they keep them at home. It’s very sad. We need to have that 5% quota properly implemented. We also need to have some sort of database with proper documentation of disability. If want to go out now and find statistics of disability figures, we wouldn’t be able to. We don’t even know the number. We know that 12-15 million people in Egypt live with a disability but if we come to categorize those 15 million by disability, we would have no idea how to. We need to understand whom we’re talking about and that comes with research and information gathering.
I recognize that it would take a long time for us to gather all this information and to have this documentation. But we can only move forward with policymaking with this information. Without it, we’re lost. On another note, a lot of parents don’t know where to go. Currently, if you’re a parent from a lower socio-economic background you don’t know whether there are charities or where there are more affordable therapists that they can go to. Parents don’t know that they exist so we need to invest them in making that process easier for parents.
R: Tell me more about the parents.
N: In the end, the parents are the ones that are supporting the children and they are the ones that need to be informed. We need to educate and empower parents in how they can best support their children at home and outside the home. For those from different backgrounds, we need to spread awareness and teach them that they shouldn’t be ashamed of their children. They are not inferior to anyone else. This would come through community initiatives and campaigns, going into different communities and areas where you talk to people and also understand where they are coming from and the psychology behind their perceptions and attitudes.
R: In the future, are you planning on working with lower socioeconomic backgrounds?
N: To be able to serve these communities, I need to work more and understand what I’m doing so that I can be of service to them. I’ve been in the field for less than a year, properly, with my Master’s. I still want to continue where I am at for another year or two. My ambition is not for me to have a center. My ambition is to have a foundation where we train parents for free and therapists for free so that they are better equipped. In the future, I also hope to focus on more socially-driven initiatives to better benefit the Egyptian society in specific and the Middle Eastern community as a whole.