“The golden rule is to treat people how you would like to be treated but for me, the platinum rule is to treat people how they want to be treated, not how you think that they should be treated.” – Crystal Asige
Crystal Asige is a talented artist, songwriter and advocate for people with disabilities. She lost her eyesight after complications caused by a condition known as glaucoma. We sat down with her to find out more about her story and her vision to change the narrative for people with disabilities.
Tell us a little about your background
My name is Crystal Asige. I was raised in Mombasa and that is where I went to school. Later on, I got the opportunity to travel to the UK for further studies. I am the last born in a family of four siblings.
Take us through your interest in music, theatre and how it all began.
My mother tells me that when I was four years old, she noticed that I loved singing. She says that when I was in nursery school, I would come home singing and I would go on singing even when I was in the house.
My mother played an important role at the time because she encouraged me to participate more in the arts which I already gravitated towards. From primary school all the way to high school, I became an active participant in anything that pushed me to be creative and put me on a stage to perform; from reciting poems, acting in plays and competing in drama festivals.
At this point, what was your greatest influence to get into the arts?
My elder brother is also an artist, he is a bass singer. He was one of my earliest influencers because I would listen to him singing at home. I would be inspired because I felt like music was going to be something that I would pursue as well.
I also got inspired to pursue music by watching a lot of television. I would listen to Mariah Carey, Whitney Houston, and Janet Jackson. I was attracted to how glamorous their lives were and their ability to express themselves through song, their videos looked colourful and really fun. I just wanted to be a part of that, basically to perform and be creative with music.
Between music and theatre, what did you gravitate most to?
I didn’t have a favourite, both were just as important to me especially when I got the opportunity to work in musical theatre which essentially combines the two arts; a play that has music performances in it. I enjoyed participating in those kinds of musicals.
Do you have one memorable role you played that stands out the most?
I had so many memorable roles it’s hard to pick one, but I remember my first time performing in the drama festivals. My mum and I had travelled on an overnight bus to get there. I was around 16 years old and I was going to recite a poem. I had gone through all the qualifications and had gotten to the finals. The audience immediately wrote me off as soon as they saw me because I was just a tiny little girl and the other competitors were seasoned performers from the university.
The winner from the previous year was one of my competitors and he seemed to be the obvious crowd favourite. They pitied me because they thought I was setting myself up for embarrassment. I ended up coming second in my category and although I didn’t win, the audience and eventual winner took notice of my powerful voice and talent.
That was such a pivotal moment for me, coming from a small town in Mombasa and challenging really talented performers. It gave me a lot of confidence in myself and my talent.
Did this newly found confidence encourage you to enter more competitions?
I got into a few more competitions but later on, I decided to focus more on production rather than performance because I didn’t feel comfortable putting myself on stage to be judged and scored against.
I believe that everybody has something unique to offer and therefore no one should be equated to the other. So, I concentrated on writing poetry and that’s when I discovered that poems were just songs without melodies. That is how I ventured into writing music as well, by writing poems first and then turning the poems into songs.
At what point did you start having issues with your eyesight?
It was around the same time when I was around 15 or 16years old. At the time, it wasn’t something that I really worried about since I was still doing the things I needed to do without any significant difficulty. I was still actively involved in sports and theatre. Life hadn’t really changed but looking back, I now know that that was when my eyesight started to slowly weaken.
I could no longer sit at the back of the classroom. I always had to run fast after the break so I could get a seat that was close to the board. I didn’t want my peers to know I was having a difficult time seeing because I feared they would ridicule or mock me. I even had to memorize the scripts to plays beforehand because I didn’t want the other guys to see me struggle to read the lines off the paper.
Did anyone around you get concerned about your vision weakening?
People noticed but we all just thought that it was just another eye problem that could be rectified with a lens or a pair of glasses. Plus, both my parents wear glasses so I didn’t get too alarmed because I thought that I was inheriting a gene and therefore a pair of glasses would make everything okay.
I eventually went to my mum after I could no longer read my scripts in drama, the words in books were getting blurry and I was always squinting my eyes to read anything. We went to an optician in Mombasa to get my eyes checked out and the doctor didn’t believe that I had any problem. He was convinced that I was just faking so that I could skip school. According to him, there was no way a young girl such as myself could have a problem with their eyesight.
He kept telling me to stop lying and from that day I developed a negative attitude towards doctors because I wondered why he would discredit what I was saying yet I was the one who had the problem. My mum didn’t like how that doctor treated me and we decided to go see another doctor who was an ophthalmologist. An ophthalmologist is quite different from an optician because an ophthalmologist deals with the back of the eye while the optician deals with the front; prescribing glasses and lenses.
Upon examining me, the ophthalmologist gave me eye drops, and told me to use them for a month and I would be okay. I later got reading glasses to help with short-sightedness which didn’t really make a big difference. That would be the only treatment I got in Kenya.
How did all this affect you as a young woman?
My self-esteem was hugely affected because I could no longer enjoy the things that I used to enjoy before. If I attended a party I had to leave before 6 pm because once it got dark, I struggled to see well. I didn’t want people to know that I had a problem so I would hide the issue as much as I could because I didn’t want to be made fun of or teased.
Once you realized that your eyesight wasn’t getting better even after getting glasses, did you have any fears?
Being still in high school, my greatest fear was that I would be treated as an outcast and people would no longer want to sit with me or be my friends. I always felt a compelling need to fit in and my bad vision, I felt would make me the odd one out. I was scared of being called “macho nne” or “kipofu”. I felt like if people knew how much I couldn’t see, they would marginalize me and that scared me.
At this point, did you ever think about the possibility of going blind?
It never crossed my mind that my situation would ever get there. Though I had issues, I never thought that I would ever go blind at one point.
When did you later find out the exact condition that you were suffering from?
I went to the UK to Bristol which was where I attended university to study film and theatre. I went for a general checkup and the doctor told me that there was something seriously wrong with my eyes. He said that the pressure was three times higher than the normal pressure in the human eye.
The news took me by surprise and really shocked me because the doctor was quite serious in the way that he gave me the news. He told me to drop whatever I had planned to do that weekend and go straight to the hospital. Still alarmed, I went to the hospital and after a series of tests were done over some time, I was finally given diagnosis of having glaucoma.
At the hospital, they told me that glaucoma is more aggressive to black people because of the colour of our eyes. I was also told that there is no known cure for it and that the best they could do was prescribe something for the pain just to keep me comfortable. They also told me that since I was so young and my case has progressed quite significantly, it was going to take around three years for me to go completely blind.
I was left distraught because I was only 20 years at the time, in my second year of university. Lots of things flashed before my eyes, I thought about everything that my parents had sacrificed for me to get a good education only for me to drop out because I was going blind. I also thought about my course which was very visual, and I wondered how all this was going to work if I couldn’t even see. I was so stressed out, to say the least.
How did you break the news to your parents?
They were still miles away back in Kenya, so I eventually gathered up the courage and gave them a call. My mother tried to be as strong as she could, I don’t remember her crying on the phone that day. All she said was everything was going to be okay; God would see us through, and they would always pray for me.
Though she tried her best to encourage me, deep down I believed that my life had come to a halting stop. A qualified doctor had just told me that I would go blind while I was still in my twenties. It was a very low moment in my life. I didn’t want to go anywhere and I never wanted to meet up with people, so this only worsened my depression.
I started drinking too much and taking drugs. I used to hang out with people who weren’t good for me but I hang out with them anyway because I needed to distract myself from the realities in my life, that I was going blind.
Being so far from home, did you have any support in the UK to keep you in check?
I had a few friends, but they hardly knew what I was going through because I can be a very reserved person and I like to keep to myself a lot. Only a few people that I lived with in the hostels knew about my issues, and a few of my teachers too started to notice that I couldn’t keep up with classwork because I was going through some kind of depression.
My peers tried to intervene and attempt to help me but at that age, everyone is trying to find their own way in life so I couldn’t rely on them for the support I needed because they had their own lives to live. I also felt uncomfortable burdening them with all my problems while these were people I had just met a short time ago.
Having gone through that difficult time, what advice would you give to help people understand what it means to be depressed?
People need to understand that depression isn’t something that you can just snap out of. I think most people assume that if you are depressed today, tomorrow you will have gotten better and that’s the furthest thing from the truth.
When someone says they are depressed, we tell them that it’s all in their heads and that they can simply just shake it off. This would be like telling a person with a broken leg to walk it off and they will be fine. It can’t work that way. I feel like in the black community we put too much emphasis on physical health and none on mental health. With us, it is still regarded as shameful to say that you are depressed, you are told to pray and toughen up when what you need are support and treatment.
At this point, how severe was glaucoma, could you still get around by yourself?
By this point, the situation had gotten worse. I relied on other people to help me move around. I used to hold my friend’s arm because my vision had deteriorated significantly. To the public, it didn’t seem unusual to walk side by side with my friend while holding hands, but I needed them to guide me around because my eyesight was progressively getting weaker and weaker.
Me depending on my friends to help me get around was my way of disguising my impairment because I wasn’t ready to be seen as a disabled person. I hadn’t accepted that fact because I was still holding on to the hope that a miracle was on the horizon and that my eyesight would soon be restored.
Looking back, I was holding myself hostage at the same spot, rather than accepting that this is who I was and going on with my life tied myself down. Maybe it is because my glaucoma had been for a long time been invisible and now it was starting to show itself I was getting scared.
By 2016 I had fallen into too many ditches, I’d almost got hit by cars and my doctors advised me to get find a way to come to terms with my situation because it was starting to get dangerous. It was then that I bought my first white cane.
How was it like to use a white cane, especially in public?
I got the cane in England and things are quite different there because it is not as much of a big deal as it is here. People are already accustomed to seeing people with different kinds of disabilities.
That same year I came back to Kenya and things were as different as they were difficult. First of all, the environment is not designed to accommodate a visually impaired person. There is zero accessibility for disabled people, there are no designated pavements, and most roads are dangerous. I could only use my cane at home or church. When I needed to go out in the town, I had to find someone to accompany me.
I also felt like people saw the cane more than they saw me. I was more disabled than I was Crystal. People started referring to me as “the blind girl in church”. I almost lost my name because people saw my cane and failed to acknowledge me.
By this point, I had already finished school and I faced a lot of discrimination when it came to looking for work. I had an impressive CV because I had worked for big organizations in the UK and I had even worked at the BBC at some point. Employers would first get impressed by what I had achieved only to turn me down based only on the fact that I was blind. Being turned down time and time again really hurt my confidence because I started thinking that maybe I wasn’t good enough. I was scared that I would always depend on my parents.
How do disability policies in Kenya compare to those in the UK?
It’s like day and night. Over there they have a very efficient system about how to handle PWDs. When you get diagnosed, you fill out a form that you take to the city council, there, your information gets processed in preparation for your disability card. It’s a very fast process, once you get your card you can access lots of different trainings, support groups, and discounts on assistive devices. You can do a lot with that card.
When I came back to Kenya I had to get registered with the National Council For People With Disabilities, but it took me almost two years to get my card. That’s why I say that the difference is like day and night because in the west they have clear-cut plans to accommodate people with disabilities but in Kenya, we are still a very minority group that is often not taken too seriously.
Going back to music, did you face any prejudice due to your visual impairment?
Yes, it happened as I was looking for jobs in radio stations, tv stations and theatres. I tried to talk to producers, music artists and radio presenters. I tried reaching out to them online and I would even wait for them outside studios or wherever else I heard that they were.
I sang to them and they acknowledged that I had a good voice. They would always promise to get back to me only for them to switch off their phones. I failed to understand why they would compliment my voice only for them to ignore my talent. Either way, I kept doing the same thing and looking for some of the artists that are quite big right now, like Sauti Sol.
Was that how you came to be a part of Sol Generation?
Yeah, I had met them many years before as I was still looking for artists to share my work with. They liked my voice and we hit the studio but afterwards, we ended up losing contact. Years later I heard from a mutual friend that Sauti Sol was looking for songwriters and I submitted my name. I met up with Bien from the band, and he told me about Sol Generation it was at that point that I met the other guys like Nviiri the storyteller who had been picked for the project as well. Early this year we met once again, this time to work on a project together, the song Extravaganza.
Extravaganza was a huge hit when it came out. Were you concerned about people being more interested in your disability than your voice and talent?
I definitely had some concerns but I would always tell Sauti Sol that I never wanted to be positioned as the blind girl who was only being featured in the song because of my condition. I felt like what I was doing was something bigger than me, that I was a positive example to the rest of the disabled community that it is possible to work hard and get good returns from your effort.
I had been given a unique platform and opportunity to change the narrative about how disabled people are perceived. I planned to use the platform as responsibly and intentionally as possible. Lucky for me, Sauti Sol was very supportive of the vision I had for the project.
How does being in Sol Generation Compare to the other projects you have done in the past?
Working with Sauti Sol definitely puts me on a bigger platform than before because people get to see more of me and engage with me and my music. More doors have definitely opened up for me, people are more willing to meet with me for business or invite me for gigs.
Also, being around people who are creative at what they do makes my experience much richer as an artist because I get to learn from them and grow because they are always working and trying to better their craft.
Should we expect more group projects or are you working on solo projects as well?
I have actually released a song and the video will be coming out this week. The project is under Sol Generation, so we are still working together. The song is titled “Lenga”. It will be available on the KLM Kenya Facebook page and later on my YouTube channel. They were celebrating 100years of flying and they decided to sponsor the project. I still have more music with Sol Generation that will probably be released at the end of the year.
Tell us about your YouTube channel “Blind Girl Manenoz”
Blind girl manenoz came from all the time people referred to me as being a blind girl. Then there was the trend of people talking about #holidayManenos, and #breakfastmanenos, so I just combined the two things and ran with it.
I noticed that lots of people wanted to know about me and how I dealt with my condition so I figured that a YouTube channel would be a convenient way to answer all the questions at once. That way, I would also be putting my film and theatre degree to good use because I enjoy creating content.
You also have a very good initiative known as MapAbility, tell us more about that.
MapAbility is a tool that has been created through the Open Institute, which is another place where I work. Open Institute is a non-profit organization in Nairobi. They contacted me and asked if I could join a project called the Ability Programme. The programme is about assessing how accessible the buildings in Nairobi are for everyone, especially for people with disabilities.
I was brought on board after they had followed me on social media, and they liked how I advocated for PWDs. I joined the institute sometime last year, we began the research and this year we presented our findings which are basically on a map which shows the layout of the city, the various buildings and the percentage of accessibility.
It works like google maps, you can go to our website and check the various buildings for instance in Westlands and look at the data that has been provided there concerning the level of accessibility. We are building MapAbility and trying to broaden up the assessments to more parts of Nairobi and eventually to other major cities and towns around the country. The plan is to gather enough information so that we can present it to relevant personnel such as urban designers, builders and engineers to make sure that we affect the change we need. Also, we want to strengthen our policies in such a way that those who do not adhere to the stipulated standards are answerable to the law.
What advice would you give to people who have acquired disabilities later in life just like you have?
There is often a debate about whether it is easier to be born with a disability or to get one later in life. I think that for every scenario, the challenges are unique in their own way and therefore you can’t really say which is easier. For those who get disabilities, later on, I think it’s important for them to take the time to mourn their loss because it’s like they lose a part of themselves that they have lived with for however long. It’s important to practice patience which will eventually lead to acceptance.
They should surround themselves with positive people who support them rather than enable their disability. They should associate with individuals who encourage them to be autonomous, people who give ideas about how to creatively deal with their condition rather than those who always speak down on them and against their abilities. A good support system reminds you of your significance and purpose. Basically, be with people who are positive.
They should then familiarize themselves with the different policies and services that are designed to support PWDs. They should go and get the disability card which has been made easier now as people can register online through KRA. In the past, it was a tedious exercise so it’s good to see that it has now been simplified for everyone. PWDs should research all the things they are eligible for i.e.; tax exemptions, and carer services, and take full advantage of the opportunity that the card gives them. They should try as much as possible to be proactive in getting the information that will benefit them, finding solutions to their own problems and making sure that they are not left behind by life.
PWDs should not shy away from showing themselves. Preferring to remain at home behind closed doors will be counteractive to the cause of awareness. The more they are seen and heard, the better other people will understand them and know how to cater to their needs.
What should non-disabled people do to support the disabled population?
We are living in a new age where everything is changing. Times have moved forward, technology has moved forward, and perceptions should also change as well. Past narratives about disabled people should be left in the past. Every new person you meet with a disability should be treated as the first ever disabled person you are coming across. You should not subject all PWDs to old narratives and stereotypes. Everyone is always going to be different from the other. Take me for instance, my experiences, characteristics and challenges can be completely different from other blind people. It is, therefore, wrong to put us all in one basket.
Secondly, they should not assume to know what we need just because we are challenged in one way or another. They should first ask how they can help before pushing our wheelchairs, holding blind people’s hands, cutting food for us in restaurants or even giving us cash because they assume that that’s what we need. Disabled people should be treated with respect and dignity just like everyone else. We might be the biggest minority in the world, but anyone can easily join this community.
Non-disabled people should also participate in advocating for more disabled people in the mainstream platform. They should ask the local tv stations to include more content that speaks positively about disabled people and promotes diversity. Diversity is like the seasoning of our world and without it, we would exist in a dull and grey world.
The golden rule is to treat people how you would like to be treated but for me, the platinum rule is to treat people how they want to be treated, not how you think that they should be treated.
What are your thoughts about the state of inclusion for PWDS in Kenya?
Our society is not inclusive at all. We are still fighting retrogressive mindsets that still believe that PWDs are a burden, poor, and pitiful and that they are not meaningful to our economy. This is far away from the truth.
I always say that before we can build metal ramps, we need to first build mental ramps. As much as we are fighting for Inclusion, our leaders need to be sensitized about universal design in services, technology, and education. If our policymakers are not sensitized about inclusion, then it won’t trickle down to the grassroots. We have a long way to go unfortunately but all things have to start somewhere, and we hope that the work we are doing with the ability programme and MapAbility will be of significance to the ultimate cause.
What role do disabled people have to play to promote their inclusion?
I have been quite vocal about this issue and I believe that this is also our problem. It’s not just about other people accepting us, it is about accepting ourselves as well. PWDs need to advocate for themselves, do things for themselves and get actively involved in shaping their own courses.
I feel like we hide too much at home because we fear going out. Understandably so because we have to contend with a lot of challenges. But staying at home hinders your growth and robs you of the opportunity to be out in the world and really identify what you need and how to advocate for it.
What is your vision for people with disabilities in Kenya?
My vision is to change the narrative about PWDs. To show the world that we are significant, purposeful, attractive and clever. I also envision us believing in ourselves and making the impossible possible and inability into ability. If I was to die today, that is what I would want to be remembered for.
Brian Muchiri is a passionate writer who draws his inspiration from the experiences in his own life and of those around him. He is candid and he seeks to inspire society to be more pro active and vocal about the social issues that affect us. Brian is also actively involved in pushing for awareness and inclusion of people with disabilities through his foundation; Strong Spine.