ShirleyWho is Crystal?
I am a 32 years old musician, producer, and VIP (visually impaired person) ambassador. I also have a YouTube channel called Blind Girl Manenos where I share aspects of my daily life as a visually impaired person. I talk about different things that I experience and share hacks I have discovered to help overcome my impairment. Example, hacks on how to put my tooth paste in the centre of my toothbrush or how to pour a cup of coffee. In addition, I am loyal, honest individual, plus I values exchange and support.
Tell us about your childhood?
I am the last born in a family of four siblings, and was raised in Mombasa. I have always loved the arts and I remember being drawn to it from a very young age. So much so that as a young girl my dream was to be a musician and to work in film production. When my mother discovered that I loved singing at age 4 she encouraged me to participate more in the arts. So as you can imagine from primary school all the way to high school, I did everything from reciting poems, to acting in plays, to competing in drama festivals. I specifically enjoyed doing musical theatre, musicals, because it allowed me to act and sing .
When did you notice that you were beginning to lose your sight?
I think it was when I was about 14 or 15 and in high school when I noticed I was struggling to read the blackboard in class. In addition, it was getting harder to read my books as the words began to look blurry. As a result, I went to see both an optician and ophthalmologist but I was misdiagnosed and given glasses and eye drops that did not help. I first saw an optician but for whatever reason he didn’t believe that I had any problem. In fact, he believed that nothing as wrong with me and that I was faking it so that I could miss school. I could not understand why he would automatically assume that I was lying. Also, my mum didn’t like how he treated me and so she took me to a different doctor, an ophthalmologist. The difference between a ophthalmologist and an optician is that while an ophthalmologist deals with the back of the eye, the optician deals with the front. Upon examining me, the ophthalmologist gave me eye drops, and I later got reading glasses to help with short-sightedness, but both did not make a big difference. As a result, I developed a negative attitude towards doctors.
So, what did you do?
My vision became progressively worse but because of my bad experience with doctors I kept it to myself. I also decided that the only way I was going to make it was if I adapted to my visual challenges. Therefore, I made every effort to get to my classes early so that I could get a sit close to the black board. This helped me see better, plus nobody would notice that I was struggling to read. It was a very tough season but I managed to finish my high school. My eyesight however continued to get worse with each passing year. It was terrifying season for me, not know what was happening to me was horrible and I would not wish it on anybody.
What happened next?
In 2007 I left for the UK to study film and theatre at the University of the West of England, Bristol. I tried to adopt to my visually challenges like I did while in high school, but it was s difficult as the lecture halls were significantly larger than the ones at my high school and so it did not matter if I sat at the front. Thus, I was forced to get examined and after a series of tests I was finally diagnosed with glaucoma. I was told that my eyesight would get worse overtime and that there was no cure. That the only thing that could be prescribed was something for the pain. Further, it did not help knowing that glaucoma is more aggressive in black people because of the colour of our eyes. In fact, it was predicted that by 2013 I would go completely blind. At the time I was 20 and a second-year student in university.
How did the news affect you?
The news left me distraught, I thought about my course which was very visual, and I wondered if I was going to manage to finish it, and even if I did if I was going to get employment. I feared that because of the condition that I would always depend on my parents. I really did not know how it was all going to work out. In my hopelessness I became depressed; It was a very low moment in my life. I was in denial for a while and dealt with it in self-destructive ways. I was partying a lot, I drunk a lot and also did drugs. I even isolated myself form other people. I didn’t want to go anywhere and I never wanted to meet up with people. Additionally, the few people I allowed into my life were the wrong crowd who provided me with an escape from my new reality that was too much for me to handle at the time. This only worsened my depression.
Did you finish your degree?
Thankfully, I managed to finish University by the time I was 21. After graduating I found myself back home and my discontentment and unhappiness was only magnified. I found myself a bit lost. My depression got worse and I even had suicidal thoughts. I felt like I was start out at zero, like I was being left behind by everyone. I do not know if I can even explain how I felt, imagine having something and then have it taken right from under you and not knowing how to proceed. I felt like all my dreams were blowing up in my face, because I did not know how I was going to follow my dreams with my condition. I began to think that I wasn’t good enough, and that I was never going to do music, acting or production.
How were you able to overcome?
It was not easy. It was one of the hardest things I have ever had to deal with in my life. 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 wake up and feel better, that is the furthest thing from the truth. When someone says they are depressed it means that every day they get up is a bad day. It’s like having a bad day that never gets better. It breaks you down emotionally and leaves you feeling hopeless. On my own I could not get out; it was God who got me out.
What do you mean?
It was God, only God. I do not know what I would have done without Him. In the midst of my depression and pain God found me and pulled me out. He reassured me through a dream that all I needed to do was to be Still, Psalm 46 verse 10. The verse reassures me that He is God and that all I needed to do was be still. That was a turning point for me. It was in that moment that I decided that I was not alone and that I did not have to go through this alone but with God. This renewed my soul; it gave me strength to take charge of my life.
When you say take charge of your life, what did this entail?
It meant leaning on God. So, I went on my knees and I asked God to walk me through every step and to never leave my side. It meant having tough conversations with Him. I told Him that if this was my season for now that He was going to have to open doors for me. I told Him that no one could help me because it was something that no one can be prepared for.
It also meant taking responsibility for myself and a new level of self-discovery. Thus, I had to spend time with myself, to search myself and finding out who I was really, and what my purpose as on this earth was. I need to dig deep and acknowledge that my eyesight did not define me and to find a version of myself that could still thrive despite losing my sight. In my soul searching I came to the conclusion that God’s time is perfect, and so what had happened to me was not a mistake and that there was a purpose for my life. As a result, I was able to make the decision that my life was not over. It meant accepting where I was and being proactive. It meant participating in my life and not letting life just happen to me. I needed to fight back, I needed to fight for me.
What happened after this realisation?
I began to search online for doctors, assistive software and associations that dealt with visual impairment. I had to do this in order to get back to the Crystal that I once was. I also started to write music again in my free time and even applied for my work visa back in the UK. I went back to the UK in 2011 and got a job at BBC which was a dream come true.
Did you have to learn how to use Braille?
No. As a result of major advancements in technology, the blind and visually impaired have more choices at their disposal and so I did not have to learn braille. I use an app called Siri. With Siri my Laptops, I – pad, and phone are very accessible to me. The app is designed for people who are visually impaired. I dictate to my phone, report through my phone, and even have a Microsoft word application suited for me. I am able to read and search google using Siri. If I want to record something all I have to do is tap my phone twice and Siri does the rest.
Does this mean that braille is obsolete today?
Not really, Braille is still special and a necessity. It is especially very useful to those who are already conversant with the language. Nevertheless, learning Braille can take years depending on how quick of a learner you are, and at the end of those several years you will find that in modern society there are very few places that offer Braille texts. For example, I have never walked into a restaurant and found a Braille menu, or walked into a bank and found Braille deposit slips, or pursued a course with braille literature in the library, or a newspaper in braille and so on.
I was given two options once I registered as legally blind; take a few years to learn braille perfectly, or get tech savvy. I chose the latter.
What was the experience like working for BBC in the UK?
I enjoyed it very much. They were very supportive and saw value in me. The office was accessible as they were able to accommodate my impairment. Basically, the workplace there is adopted for persons with disability. As a result, I was able to put what I studied in school to work, and to thrive and grow. I However, in 2013 after about two years, I decided to move back home. I left BBC because I knew I was going blind eventually and I wanted to be around my parents and family creating memories. Plus, I wanted to pass on the knowledge that I acquired while working there. So yes, working at BBC was a great experience, but I also wanted to step out in faith and see what God had in store for me in my home country.
Were you able to get employment in Kenya?
When I returned, I struggled to get employment. I faced a lot of discrimination and for a year I did not find anything. I would get called for interviews, but once they noticed I was disabled they would not hire me. It really hurt my confidence because I started thinking that maybe I wasn’t good enough. There is still a lot of stigma and also some employers think that having an employee who is disabled is too expensive, while others may think that disabled employees are not good enough. Yet, what a lot of employers do not realise that it is actually an asset to have an employee who is disabled because we offer unique and different perspectives. At the end of the year I decided to do my own thing and to be a consultant in NGO world.
Were you able to get work?
Yes, I work in the NGO world mostly in media. I do video production. I was also recently part of the MapAbility initiative, a tool that has been created through the Open Institute, a non-profit organization in Nairobi. I work on the project called the Ability Programme. The programme is about determining how accessible the buildings in Nairobi are for everyone, especially for people with disabilities. It is basically on a map which shows the layout of the city, the various buildings and the percentage of accessibility. It works like google maps; thus, you can go to our website and check the various buildings for instance in Westlands and look at the data that has been provided about the level of accessibility for people with disability. We are hoping to move beyond Nairobi to other counties to carry out the same assessment. 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 effect the change we need.
Have you received any treatments and surgeries?
I had 8 surgeries between 2010 and 2016, but nothing worked. Consequently, I decided to stop having surgeries. I decided it was time to take back my life because I had reached a point where I was not living. I was either preparing for surgery, in surgery or recovering from surgery. I lost a lot of time, plus it was emotionally and psychologically draining.
What motivate the decision to get a cane?
Once I made the decision to stop with all the surgeries, I also decided it was time to get a white cane. It was a very difficult decision for me but a necessary one nonetheless. My vision had slowly deteriorated and was limited to light and shadows. I could not see during the day except for big objects like a big car or bus. Then when I would look at the mirror it would be foggy and blurry. Indeed, by 2016 I had fallen into many ditches and I had even almost got hit by cars. However, because I was still in denial instead of getting a cane, I became dependant on the help of friends to help me get around. It was a way of disguising my impairment because I wasn’t ready to be seen as a disabled person. In fact, to the public, it didn’t seem unusual to walk side by side with my friend while holding hands. A year later, it finally dawned on me that it was time to stop running and thus I needed a cane especially if I wanted to be independent.
Why was getting a cane a difficult decision for you?
Deciding to get a cane was an emotional process for me, it made me very sad. I felt that it was a public symbol that I did not believe that God would heal me. You see I was still holding on to the hope that a miracle was on the horizon and that my eyesight would soon be restored. I felt like getting a cane meant that I was never going to get better. Nevertheless, after a long emotional battle with myself and a lot of prayer I came to the conclusion that getting a cane did not mean that I would never be healed. That in fact my cane was a symbol of hope and so I called my white cane Faith to remind me every day about the faithfulness of God. It reminds me that I’m walking by faith. So, when I’m about to go out, I carry Faith with me, I never leave home without my Faith. And as I walk, Faith goes ahead of me as I follow.
Looking back on your life now, how has losing your sight changed you?
I have changed a lot. Firstly, I feel very privileged that I was able to see before. It is a privilege to know how colour red looks like, to know how Nelson Mandela looks like, it is a blessing. However, although it was tough losing my eyesight, I believe that I have also grown as a person because of it. I am stronger and I believe wiser. Secondly, losing my eyesight felt like putting on a magnifying glass that allowed me to see life for what it truly is, a gift. It has helped me to realise what is important and what are truly destructions. I know what truly matters. Thirdly, I have also learnt that I am strong. I didn’t know that I had it in me to overcome something like this. Lastly, I have grown in my walk with God. The bible these days is living to me.
You are also very active on social media how do you accomplish that?
I have a what’s up team made up of my friends Gideon and Moses. After I take pictures using my app Siri, I post on the group and ask them which picture is the best choice to post. I have had to learn to keep a good group of people around me in order be more efficient. It is not always easy to trust people with intimate facets of your life, but in my case it is necessary. I now have a sixth sense about people’s energy and about who I can trust and this helped me very much.
Do you live alone?
Yes, I do. It was always something that I knew I wanted and even my diagnosis with glaucoma did not kill my dream. It was very important for me to be independent. I never wanted to be dependent on my family or friends. I refuse to let my visual impairment keep me from living my dreams. I have had to developed hacks that help me to be independent. That was in fact what inspired my YouTube channel Blind Girl Manenos. I noticed that lots of people wanted to know about me and how I managed to live alone and be independent. 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. Plus, I would be doing something that I love because I enjoy creating content.
What of music, what are you up to?
I released my first album in 2014 titled Karibia and continue to perform with my band and to write songs for other artists as well. Last year I got to not only be part of the hit song Extravaganza with Sol Generation and to write with Sauti Sol. That was big for me. Also I released a song titled Lenga and the video which is available in the KLM Kenya Facebook page and my YouTube channel. I got the chance to be part of the KLM 100 years of flying celebration.
Any life lessons learnt in 2019?
Oh yes, several. If you want to achieve greatness, stop asking for permission. Nothing changes if nothing changes, and importantly not everybody that’s in your circle is on your team. And probably most important of all – hydrate, moisturise, mind your own business!
What are proudest accomplishments of 2019?
Getting to write for and with Sauti Sol was huge for me in 2019, which opened up an opportunity to also write for a KLM Royal Dutch Airlines project. The product of that was my single Lenga. Amongst other amazing stages, I was also the keynote speaker at Young African Leaders Initiative (YALI). But honestly for me, successes is when I get messages from people who said I inspired them to do something better, to be someone better and have faith that they can achieve too. If I were able to put all those awesome comments and private conversations in a book somewhere, that’s what I would be most proud of.
How do you define yourself in 2020?
Stronger.
What are your plans for 2020?
As always, building my brand is the most important. I began this year with my usual 21 day fast, this is where I seek clarity and vision for the year ahead. I have so much inside of me that I feel I need to express and share to the world, so this year I intend to work at them until the wheels fall off! That includes writing new music and shooting music videos, I have a few speaking gigs, I would also like to get back into acting, I will continue with my advocacy for persons with disabilities, I am also developing a new concept for my YouTube channel #BlindGirlManenos. And particularly exciting for me, I have also developed a training workshop where I train organisations on how to make their workplaces more diverse and inclusive to all.
What of love, do you see that in your future?
Yes, I do, just because I have a visual impairment does not mean that I do not need love or will not find love. I believe that God has someone for me and I cannot wait.