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Disability acceptance and inclusion lessons from my Cûcû

In loving memory, ûromama kwega kuuraga 

It is going to be 3years this 20th of August since you left us and I’m only just now being able to put this down. To write you into the world. To go back to writing on here.
We shared so many unspoken truths that made me feel so so safe around you
I have vague memories of carrying one litre water containers when my 6year old agemates were carrying ten litre and five litre ones  The small bundles of napier grass, handfuls probably when they carried bundles that weighed them down You made sure I had a bundle to carry or a container of water  You made it feel okay for me to come early in the morning to get my mandatory 5litres of water for washing the classrooms instead of having to carry them the estimated 5kilometres walk to school at 7/8years I’m the age before mobile phones, I would be tired at the end of my school day and walk to your home less than 10minutes away instead of the slightly more than 30minutes brisk walk to our home in the next town, …
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Somebody pinch me please, now!

This might end up being one of those posts where you have to be in my head to follow my thought process...

I'm not a fan of hospitals, scratch that, I'm actually okay going to hospitals as long as I'm not a patient. 
I do not enjoy drugs, I hate them to the point that I might actually fall sick at the thought of having to take drugs, they almost always get stuck in my throat especially the tablets. 
Like most people I know, I'm not exception in only going t hospital when in pain and absence of pain means that all is great. This is not always the case. 
At some point I realised that maybe we do not want to face the unknowns hence shy away from hospitals and doctors. 
Save for my dentist, therapist and that one doctor's visit my sibling had that I got to tag along, did I mention that I asked the doctor so many questions I was sure he wished he could throw me out at some point and this was clear from the look on his face, I have not seen a doctor for almost three years. 

To better days and an end to the anguish

Happy New Year!!!!!
2015 was quite an eventful year so much so that I often caught myself unsure of when certain events had taken place. 
It was an amazing year 
The conversations around muscular dystrophy became recognised in Kenya and encouraged the entire MD family  to continue talking about what how they go about their lives. #YALI2015
 It was an adventurous year 
Thanks to the Mandela Washington fellowship, I met amazing people, fell in love with Swahili language for its beauty, got a chance to use a scooter and be fine with it, enjoy it actually thanks to the numerous wheelchair and scooter races on campus, dance without minding about seeming to have two left feet and enjoy moments in the sun after being holed up in a cold room like it's the best thing in the world. #YOLO
I discovered the beauty of not giving anxiety too much power over what you can and cannot do the art of not overthinking plans. A lovely bird always tells me that I have OCD that I shouldn't use around her. A…

My name is Khan

Have you ever watched a movie that impacts greatly on your life from that moment on? One that changes you and how you deal with situations?
My name is Khan is one such movie for me.
"There are only two kinds of people in this world"
"Good peoplewho do good deeds"
"And bad people who do bad"
"Good people. Bad people. No other difference"

This conversation rings in my head very many times .

The Kenyan Persons with Disabilities Act 2003 which is currently under review provides under Article 21- Accessibility and mobility that " Persons with disabilities are entitled to barrier free and disability friendly environments to enable them to have access to buildings, roads and other social amenities and assistive devices and other equipment to promote their mobility"
Due to limitations brought about by this Muscular dystrophy that has decided to be a parasite on my muscles, I've developed gravitational insecurities when faced with uneven g…

Tell the African Story

Monday Blues
That Monday had been the most difficult day I had had and I have had so far, I had been stuck all day trying to sort out a personal issue and I was dealing with the most difficult and demeaning people I’ve had the pleasure of meeting in my life, my phone’s battery was drained so I had switched off the data option around midday. When I got home, by habit I plugged in the phone, waited for it to come on and turned on the data as I went to get rid of the layer of dirt and sweat. I was so tired and not really in the mood to eat, but I knew for a fact I wouldn’t survive the night seeing that a single banana is all I had eaten for lunch. Missed calls, text messages, Twitter notifications, new emails, updated applications, WhatsApp messages, my notification panel was overflowing! For some reason that day, emails got priority and there it was “Congratulations! You were chosen in the 2015 Mandela Washington Fellowship for Young African Leaders” To say I got confused is an understa…

THE FALL (not of mankind)

Unsure temperatures
The last week or so, weather in Nairobi has been confused, bright and shinny one minute,  freezing the next. The warm episodes could last all eternity if it were up to me but then again, that must be why God is not human(read selfish). The 12th of June was one such confused day, it was so bright in the morning I was sure I'd get  rid of my layers of jackets at some point but it remained stubbornly chilly. Fastforward to lunch time, I toyed with my food as I enjoyed my one hour break from sitting down and headed back to my desk.
Habits, the dive
I had requested a meet with a colleague and when they were settled in after lunch I headed to their office. To be sure I don't miss the seat, I've developed the habit of holding onto the arms of the seat before easing onto it. Let's just say on this day I missed the right chair-arm and boy did I dive! Since my hands were behind me I couldn't use the to break the fall and my chin had to do it for me. Having…
Social media alone cannot be enough to create awareness, hence we need mainstream media. General advocacy alone may not make the challenges of living with a progressive muscle degenerative condition well understood so once in a while we resort to self advocacy ( putting yourself on a pedestal) so that the lives and experiences of other people can be easier than yours.
Questions are welcome :-)