How I learnt to use my voice

Leon Juma

Leon Juma, one of our Youth Citizen Reporters on 2030 and Counting, tells us what led him to become a disability rights advocate.

It is so important that people with disabilities are at the centre of change. Our voice can really help make changes.

Back in my home country of Kenya, I was lucky to have had quite a positive experience at school growing up. My high school focused a lot on inclusivity. There was a diverse mix of students both with and without disabilities.

It was a great experience and life was great. There was always help and love from all. I was fortunate to have had this experience of inclusive education. But I know this isn’t the case for everyone. Many people with disabilities around the world face stigma and discrimination throughout their whole lives. Especially at school.

Leon Juma, one of our youth citizens, using a computer

Why I chose not to disclose my disability

For me, I had to face this when I joined college and all hell broke loose. My experience in college was the opposite of high school. The trouble actually started on my very first day. The administration was unaware of my disability and never asked me about it. Because of how negatively disability is often viewed in Kenya, I was also nervous to bring it up myself. I’d never really had to worry about that before.

My roommates would make fun of me because they didn’t understand why I walked the way I do. We also had a shared room and shared bathroom. This meant I had no privacy to deal with my bowel condition. Facilities were often inaccessible and no one was there to help accommodate my needs. This really affected my learning experience. I felt discriminated against and frustrated that this could affect my education. 

But I wasn’t going to let this stop me. When I joined college, I was one of only two youths with a disability out of 4,000 students. This, along with my personal experience, motivated me to want to change the policies. 

Impact of reasonable adjustments

One day the Dean of Students called me into his office to ask me to explain why I had medical equipment in my cabinet. That’s when I knew it was time to open up and tell them about my disability. Filled with remorse and surprise, they were apologetic. They then began making reasonable accommodations to make my life better. There was such a positive change I never wanted to finish my course there!

Because of my experience, I knew I didn’t want other disabled students to have to go through the same thing. So, I met with the college administration to discuss the problems. We agreed that all students with disabilities would get reasonable accommodation once admitted. 

The college is also now much more accessible because they have built-in ramps all over the campus. This has led to an increase in registration of students with disabilities. We even have a youth with disability representative on the student leadership council. I am happy all these changes were made because I chose to speak up about my disability and advocate for disabled people to be included.  

Using my voice and the importance of advocacy

This experience taught me how advocacy is important. Advocacy is having the courage to stand up and speak out to influence change. Moreover, it’s the ability to make it better for someone else. There is ‘nothing about us without us.’ It is so important that people with disabilities are at the centre of change. Our voice can really help make changes. Without my ‘voice’ the university may not have been able to make such positive changes. 

That’s why I joined Leonard Cheshire’s 2030 and Counting project while volunteering for Action Network for the Disabled (ANDY) in Kenya. For the past 18 months, I have been encouraging other youth with disabilities to speak up and tell their stories to help bring about change. Many youths with disabilities in my country face the same challenges every single day.

My advice to every young person with a disability I meet is that they must know their voices matter. their rights are important. Youth with disabilities are ‘experts of their experiences’. Only they can change the story. Youth with disabilities must keep speaking out until they’re heard. That’s how change happens.

Speaking at Zero Project Conference

Through my experiences, I also was lucky enough to be invited to speak at the Youth Forum at the Zero Project Conference. This year’s conference was all about education and it was its first Youth Forum. Participating in this forum meant a lot to me.

It’s so important for youth with disabilities to go out there and tell their own stories. I am very grateful that my work with Leonard Cheshire led to this opportunity.