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 wit

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 a

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. Hav

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 :-)

I bumped into an article that couldn't have shed more light on this decision which is rather confusing. I remember the heated debate that we had during a Youth and Employment conference last year with opposing opinions being aired.  My two cents has it that once you are confident enough in the qualifications that you have and your suitability for the advertised position, letting your employer know that you have a disability is a way of ensuring that you will be going into a welcoming working environment if you happen to get the job. This can be as simple as adding your registration number with the National body for those with disabilities to your bio-data. Read on and get wise :-)  https://www.facebook.com/groups/782290015159886/permalink/819852584736962/?pnref=story How to use your disability as a strength when applying for jobs Career advisers told me to hide my disability on applications, but being open and turning it into a strength helped me get a graduate job

Today a friend of mine crowned me the queen of lazy hair! It had me all smiles because she knows me all too well. This post was inspired by my visit to my hairdresser's today. And I was faced with the reality that the reason I go all the way ( out of my way) is because they don't make a big deal when I need a chair held here or something else passed to me. They don't make a mountain out of the 'double chair' I so often request for.As you read this, just ponder at how accessible your hairdresser is to those with different disabilities. These are the days when I enjoy going to the salon, before you run off I won't go on and on about types of hair food or hair colour or whatever other languages are spoken at the hairdresser's. The conversation here was nonexistent for a good long while till one of those undoing my hair mentions about how ticked off about this old friend who seems to think they have a few shillings to handout. This is not a one off incidence bu

 Some people will say that parking spaces are problems of the middle class, I beg to differ, in instances of having a disability, having a car/vehicle becomes a necessity in the move to achieve independence as it makes mobility and movement easier. The author of this story has done justice to an issue which rarely receives attention. I've highlighted a point that would get county/city governments joining in :-) http://www.huffingtonpost.com/rachelle-friedman/an-open-letter-to-handica_b_6666702.html As someone who has worked with people with disabilities, I thought I understood more about that life than most people did. I volunteered during college for a few events and landed my first full-time job leading dance and fitness classes for active senior citizens. I knew they dealt with physical pain, that they sometimes felt talked down to, and that they didn't have the independence most of the population takes for granted. But after I became a part of that world due

The Spoon Theory by Christine Miserandino My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble o

So today the management of the building where of offices are based decided to pull a fire drill on us! Fun right? Not at all. A while back when one of my colleagues went for fire rescue training organised by the management of the building, one of the questions I asked her is if they had been given any tips on how to evacuate people with various disabilities in case of a fire. No mention at all. I just kept hoping that in case of a fire drill they would give us a heads-up. Anxiety is a big part of my daily life which has seen me develop OCD ( Obsessive Compulsive Disorder) to take control of situations and minimise my instances of anxiety. About two hours ago, I was hinted at that there would be a fire drill in the building anytime from 11AM. As you can maybe imagine, I was happy that i was in the know, but that was just before my anxiety kicked in. First, I became suddenly hungry despite having a pretty routine morning, then came fatigue not to mention the very restful night I had than

 Below is an excerpt from the official rare disease day. Kenya marked it's first rare disease day last year with awareness creation in the media and on social media. I have highlighted parts that show you why as persons living with muscular dystrophy, this day is important to us, our families and the society as a whole. What is a Rare Disease? A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. ( There is no data available on rare diseases in Kenya). One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies