By Patience Nyange and Esther Kiragu
In the journey of life, at one point or another we have all asked ourselves who am I and why do I exist? This week on the #KenyaWomenSeries Vol 32 we feature a lady who after years of trying to figure out her place in the world, finally found her niche which presently reads: An award-winning Artist, Amnesty International Kenya Board member, visual arts trained disability and inclusion champion, YouTuber and public speaker…who just happens to be blind! Ladies and Gentlemen please give a warm applause to Crystal Asige.
It is hard to miss Crystal Asige’s great sense of humour. She describes herself as crazy about music, expression, rights and freedoms, diversity and inclusion, as well as a champion for accessibility for all; no matter one’s ability or disability.
“I seek to create awareness around the intersectionalities of being a young, black-African, female entrepreneur and leader with an invisible disability. I endeavor to set up models that disrupt negative perceptions, with the hope that I will have exponential impact in society at large.
Her love with the arts began at an early age, when she understood her ability to, and the importance of, standing alone. Inventing songs in my head to express how the bullies in nursery school made me feel sad and lonely at age 3 may have been ‘cute’ to my mum at the time, but in retrospect Art saves people. Art has the power to transform my sorrows into beauty and to turn my despair into hope.
Brenne Brown puts it this way: music gives our most heart-wrenching pain voice, language and form so that it can be recognized and shared. Even having no way to articulate it as well as she did, somehow I had that deep knowing somewhere inside of me when I sang about the bullies as a little girl to my mum. Isn’t that incredible? Apart from that very significant event, others have been:
But the most significant to me is being brave enough to dream something and achieving it.
1. Please tell us more about how you lost your sight and your passion for disability rights.
No one wants to live a life without basic human rights, dignity, integrity, autonomy or a life where you are invisible, and persons with disabilities are no different.
Because I wasn’t born like this, my perspective is from both sides of the coin and that’s why I’m so passionate about it. Since High School, my eyesight steadily declined because of glaucoma aka the ‘silent thief of sight.’
Glaucoma is an eye condition that causes damage to the optic nerve which is important for your vision. With my white cane which I lovingly named Faith (because I walk by faith and not by sight), I now live as a visually impaired person, but personally prefer the term VIP!
2. Tell us some of your experience through this #COVID19, lessons learnt so far and ways we can support disability inclusion in the COVID-19 response.
As a community, we have been disproportionately affected by the pandemic because our needs and abilities are incredibly more nuanced than the non-disabled. Kenya’s environment was already disabling for us, but now there are massive gaps in the medical facilities such as training of medical staff on how to care for Persons with Disabilities (PWDs).
Additionally, there are gaps in accessibility of public transport, building of e-learning platforms, accurate national data on PWDs, sufficient budget allocations, access to information, protection against violence and sexual abuse towards women and girls with disabilities and sustainable programs to benefit our community, which continue to leave us more vulnerable than ever. I believe Gandhi said a great Nation is measured by how it treats its weakest members.
My personal challenges have been around these questions:
Working online is also challenging because it ends up being a very visual means of communication when others forget there is a visually impaired person in the meeting. Online Government platforms are also very inaccessible for me to navigate. If you ask me, ability mainstreaming must be prioritized otherwise we may be in danger of a very non-inclusive, post-Covid world.
3. You run a YouTube channel Blind Girl Manenoz (BGM). What was the inspiration to start the YouTube channel and what content do you share on it?
BGM came about when I returned home to Mombasa from studying abroad and people that knew me from High School noticed my eyesight had declined much further. They would ask me many questions like how did you finish University? How do you cook? How do you clean? How do you go shopping? How do you travel? What do you do now for fun? I got exhausted answering everyone’s questions individually because of constantly repeating myself, so I decided to put my film and theatre degree into use and start making YouTube videos showing people the ways in which I have adapted.
4. You were part of the project behind MapAbility, a tool that has been created through the Open Institute, to assess how accessible the buildings in Nairobi are for everyone, especially for people with disabilities. How was it working on this project and what impact do you see as a result of it?
Mapability’s bottom line was about universal design. It brought awareness to the general public, for the very first time in most cases, that being an inclusive society doesn’t just mean building a ramp at a door and more importantly, it isn’t only useful to PWDs. The disabled community is the biggest minority group in the world.
Approximately 15% of the global population identify with some kind of disability. This implies people with less ‘traditional’ disabilities would benefit from universally designed environments.
For example, if a pavement is built correctly and maintained regularly on par with global standards, it wouldn’t just benefit a wheelchair user using that pavement. Children could use it and be safe, mothers with baby stroller too, people pulling their heavy trolley bags and suitcases, VIPs with their white Keynes who need to avoid obstacles, passengers getting on and off public transport at a bus stop; the elderly, people with injuries like a sprained ankle, so on and so forth.
When governments prioritize universal design of its environments, every single person lives easier because of it, no matter their ability or disability. The work that we did resulted in a lot of civic engagement of people interested in a more inclusive society, acknowledgement from the Ministry of Social Protection and Labour, engineers, manufacturers and designers applying this in their work, and a continued effort from private building owners and implementing long-term strategies to this effect.
5. We asked Crystal what values are most important to her that she lives by…..
Empathy. Always remember that the other person could be you. When you can remember that your loved one, your neighbour, a work colleague, the shopkeeper, the courier guy, your doctor, the kids in your apartment building aren’t so different to you at all, then you remember that they are searching for love, respect, belonging, significance, growth, adventure and a sense of certainty just like you are.
Remembering this helps me move through the world with more compassion, kindness and understanding even when people may not extend the same to me in that moment.
True-to-Self; Another value is remembering who I am and not conforming. Because whenever I conform to please another, I am enabling that person to believe that I am willing to put their happiness over my own. Whenever we choose ‘fitting in’ over belonging to ourselves, it disempowers us. That is a deep pain to bare.
6. So how do you describe yourself, and how do others describe you?
I am a dreamer, a student of life, a powerful creator who also enjoys laughing, feeling good, peace and simplicity. I think I came here with this mountain, so that I can show others that it can be moved. As of how others describe me, that is less of my business really. Whatever they say is alright regardless.
7. Talk to us about your little tribe known as patreon.
Being an independent female artist with a disability in Africa isn’t easy, if Who I am and what I stand for resonates, I would love you to join my little tribe over on www.patreon.com/crystalasige.
Patreon is used by creatives like myself to build a community of supporters who really believe in their favourite artists’ craft, and want to get behind them moving from strength to strength! Think of it as you contributing to my “success kitty jar” every month with whatever you can, allowing me to remain creatively independent and financially sustained, making it easier on me to give you even more great music and edu-tainment. The direct support helps artists like myself to continue creating without constantly pinching pennies, or even worse giving up altogether for lack of resources, and instead helps us to focus on being of service through our art!
Now, I am not suggesting that you frivolously add to your already long list of expenses, because this is obviously a tough time for us all. What I would like to give in return for joining my Patreon are some great benefits and exclusive content you wouldn’t get anywhere else including access to a chat platform of superfans only, behind the scenes passes, monthly virtual calls with me where I will do all sorts to better connect with you on a personal level, special offers to Patreons only and more yummy perks in store. My wish is to make sure this is not just another transactional type of platform for you. I want it to be meaningful, inclusive, and just good old fun.
Any parting shot?
I have Glaucoma, that’s true, but you know what? Glaucoma does not have me!
About the writers: Esther is a writer, editor, and communication professional in Kenya while Patience Nyange is a Chevening Scholar with a Masters Degree in International Public Relations and Global Communication Management from Cardiff University. Prior to joining Cardiff University, Patience served as an Assistant Director at the Kenya National Commission on Human Rights (KNCHR).
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This content was originally published here.