Do we really know what people living with disabilities need?

1:48:00 PM

A photo posted by Sitawa Wafula (@mymindmyfunk) on

Guess who is back, Migraine headache now operating in 2.0 but I am armed this time; new meds and my aunt’s rosemary tea concoction, will update y’all on who wins this battle.

*in my Wendy Williams voice* How you doing?

*in my Wendy Williams voice* I attended a concert two Sundays ago *insert audience exclamations*

*again in my Wendy Williams voice after I have grabbed my mug and crossed my legs* My third one this year. *insert audience applause*

I am getting the hang of this concert life.
Look at me blossoming into little miss having a social life...someone update my bio and do a press release. *insert more audience applause*

*in my Wendy Williams voice* Ohh Thank you Thank you, you make the most amazing cohosts…So my friend, Daddy Owen was marking 10 years in ministry two weeks ago and he invited me to the celebratory concert at Carnivore Grounds.


I got front row right under the stage seats,
Danced and sang along to hits from back in the day
…and my best moment was when he was on stage with Denis (blind) and Bryo (no arms and hops on one leg)…aaaaand he let everyone with a disability get in for free.

Unfortunately I had to leave early because of the flashy lights (I have photosensitive epilepsy) *insert audience ooooh* As I reluctantly left Carnivore, I started thinking about stuff, disability related stuff. (Reads past blog on what I think disability means). I also thought about this people living with disability get in free offer; I know it came from a good place but if people with epilepsy and/or mental health conditions came through the gates, would they have gotten in free?

As I wondered about this, I started thinking about other aspects in society; the number of companies that say they have integrated the needs of persons with disabilities in their policies because they have placed a ramp at the entrance but have no idea how to make someone on a wheel chair feel comfortable once they are past the entrance. I wondered how many actually consult people living with disability when coming up with these policies.

The other week when I interrupted the President’s closing remarks, *insert audience applause* I mentioned the fund for women, youth and people living with disabilities but is the disabilities part of the fund really meeting the needs or was it a term added to make the fund sound SEXY just because the global movement has an inclination towards disabilities. Just to make it look like we are with it. (Ok I didn’t use those exact words but you get the drift, at least he did). Reminds me of times when people say they know me are cool with the fact that I have bipolar and epilepsy until I am not picking calls when going through depression or when I have a seizure before them and I get to know what cool with me really means.

We have people living with disabilities in the government but are they there because they have a disability or are they there because of their commitment to promoting the needs persons with disabilities? Look at the marriage bill and what it says about those of us with mental health conditions, look at the mental health bill which we finished ages ago but it is just there with no one to push it inside the house…where are the disabilities crusaders in the house?

We have the National Council of Persons living with Disabilities but does it really know the specific needs of the different clusters of disability and is it addressing them adequately? What has the Council of persons living with disabilities done specifically for people with epilepsy and mental health conditions? What is our equivalent for wheel chairs, walking aids, hearing aids and sunscreen? Local governments have funds for people with disability in the cash transfer program, I once went to the desk in my county to inquire and they told me I looked like I am the one coming to bring them funds instead of the other way round. I understand that with invisible disability it gets tricky to know who has a disability or not and this is where the National Council of Persons living with Disabilities come into play, this is where the disability crusaders in the House (Parliament) need to be heard; the registration of those of us with disabilities takes forever, the follow up process isn’t pretty and can even trigger more sickness. I am aware that the funds are for severe disability, but Ksh 2,100 bi monthly. I think they should use that money to make proper care structures for all because if you miss meds at level 2 and 3 hospital where you are meant to get for free, what will Ksh 2,100 bi monthly help with?

My politics is this – We should not just have all these bodies and elected people if there is no proper mandate and action being taken. Off the top of my head I suggest each Huduma centre should have a special desk for people with disabilities ran by people who understand our needs (not necessarily with disabilities)…I am all for integration. The council is meant to be educating ministries and the citizenship on how to live with people with disability...someone point me out to these activities.

Organizations and citizens should also take time to learn about those living with disabilities, information should be made available by all relevant stakeholders and I believe this is me pulling my weight. Do not assume or think on behalf of those with disabilities, let us tell you what works for us and what doesn’t work…inclusivity in the process and integration in everyday life goes a long way to correct all the misguided initiatives doing rounds in the country.

*exits stage*


PS: Wendy Williams I s a sort of new age Oprah who does a talk show which I loved watching until I started my 40 day no TV, no meat fast as I count down to turning 31. For some reason she was on my mind this AM.

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3 comments

  1. asking the hard questions. What happens to those with disabilities? invisible disabilities? even at a personal level...

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    Replies
    1. It is only when we start asking the questions and be persistent in trying to get answers that solutions can be gotten

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    2. Agreed Sitawa!! good to see your ministry unfold too. you inspire!

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