The cost of remaining mum on Kenyans living with disabilities and individuals with chronic illness Author Mugambi Paul

Research shows that most chronic illnesses can affect every single part of individuals life, but it doesn’t really look like it. Some chronic illnesses have constant pains and fatigue among individuals [WHO 2011].
On the other hand, I have engaged several individual in the social media platforms.
This has led me to learn several lessons
You might not know a person is suffering if you don’t communicate ]HI 2011].
I classify some of these individuals as having invisible disabilities.
This is to say invisible disabilities mean that often times,
people don’t believe that actually individuals can be sick. This leads to people saying common things that, despite usually having good intentions, can come off as rude,
dismissive, and ableist.

The one I’ve heard the most is something that has undoubtedly been said to every person with an invisible disability or illness – the dreaded ‘but you
don’t look disabled nor sick!’. This happens all too often as an offhand comment, but it’s also been followed by heartbreaking situations like eventually losing friends
who haven’t believed that chronic illness or having impairment was real because people don’t look or act sick in the way they think one should be?
So, to give you a bit of a crash course, here’s some examples of what NOT to say to people with chronic illness.

‘But you don’t look sick!’

Yep, I know – but I am. These five words reduce health down to appearance, which is not the case at all. You might be saying this with the best intentions
(hopefully shock, because someone look ~too stunning~ for someone who’s actually very ill) but what it actually does is hits on one of the biggest fears of chronically
ill people – that people don’t believe them.
Actually,
Personally, whenever someone says this, it just reminds me of the many times people haven’t believed I can’t see because I didn’t *look* Blind. You might mean it supportively,
but all I hear is doubt.
This is because am super in mobility and orientation especially in familiar territories.
Sometimes it’s an anxious moment for me when individuals with out disabilities just plainly discuss behind my back “look at him, he is just pretending, he is comfortable” not knowing I have to go an extra mile to orient myself, secondly he or she doesn’t know that I have to do it since I don’t have alternative.
Additionally, I note that Not all illnesses are visible.
I can guarantee you; every chronically ill person has tried absolutely everything they physically and financially can. I cannot think of one person who’s
simply said, ‘ah bugger, I’m chronically ill. I’m not going to bother trying things to feel better!’
Trust me, some have tried it all; all the doctors’ and specialists’ suggestions, and yes, a bunch of the tinfoil hat ones too (desperation and lack of medical
answers make for strange bedfellows).

Examples of suggestions of what my friends the blind community and other persons with disabilities have tried including: various supplements, Chinese herbs, marijuana, LSD, ketamine, essential
oils, drinking their own urine, crystals, B12 shots, spirulina, charcoal, detoxes and juice fasts, prayer and religion – the list goes on,
as a blind fellow you can guest which one of them, I have tried I’ll let you ponder on which).

And before you ask, yes
You have seen many disabled persons, the chronic ill persons going to work, or you saw a photo of one catching up with a friend on the weekend. That’s irrelevant to whether he or she look ‘okay’ to you now
He or she still remains ill, and he or she maintains his or her impairment since they do not disappear.
According to several studies they indicate the nature of chronic illness is, sadly, extremely can be unpredictable. One can have totally manageable levels of pain and fatigue one day, and barely able to
walk the next. Sometimes it’s because one accidentally overexerted himself and went over my limits, but sometimes symptoms flaring can be completely random.
If you find it annoying, just try to imagine how frustrating it is for individuals with chronic illnesses. Regardless, some have always sick and in pain – some days some are just able to manage
it (and hide it!) better than others.

‘You just need to snap out of it and push through.’

‘Pushing through’ actually makes someone, and many others with chronic pain and illness, worse.
In Kenya and other developing countries there is no particular policy framework addressing concerns of persons with chronic illnesses although a mention here and there on different framework.
Most families carry the burden of taking care of chronic ill individuals and this affects the economic and social wellbeing of the society at large. The resources used to trat could have been used for other functions [ILO 2017, undp 2016].
Its high time we have particular social protection measure to address persons who have chronic illnesses.
Moreover, one of the major experientials in the disability world and chronic illness which seems to be similar is the way the society expects us to push ourselves beyond our limits
Obviously its so great to push beyond limit but this doesn’t apply to all persons. What the society doesn’t understand persons with disabilities and individuals with chronic illnesses are not a homogenous group.
one is sick or disabled every single day, and know their body and their limits better than anyone – so telling one to ‘push through’ is actually
the worst possible advice. When you’re talking to someone with disability or a chronic illness, remember just because you’d be able to manage something, doesn’t mean
they can or should. Don’t assume someone’s health and limits for them. It totally removes their agency as a human being.
Besides having a disability some individuals might also be having chronic illnesses.
‘You’re too young to be sick!’ or sometimes for disabled persons they say woyee woyee how comes he is blind?

Yep! He or she is young! And sick or having a disability! It sucks. But sickness and chronic illness isn’t exclusively the domain of the elderly; people of all ages can get sick. The society needs to understand that Doesn’t
make their experiences less valid, or their identities abnormal. They just sick in a cool young person way, I guess. I don’t know – it’s a weird thing to
say, so just don’t.

‘If you stopped talking about it all the time and looked on the bright side, you’d feel better.’

I do! To be totally frank, as a blind fellow if I didn’t look on the optimistic side, I wouldn’t be alive right now. Being blind for 23 years now it’s not a walk in the park.
It takes strong will to be in this unjust society.
This also applies to other fellow disabled persons.
Needless to say,
Being chronically ill is also tough as hell, and many chronic
illnesses have strong ties to mental illness. One has to look on the bright side A LOT, otherwise their depression and just the daily battle of being sick
would drag one down and some can’t be able to get out of their beds.

All in all, people should be able to talk about their lived experience as much as they deem appropriate, and disability and chronic illness is not spoken about
enough. Let them vent, let us explain, let them talk about their day!

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Ableism and being ableist Author Mugambi Paul

Before you read this please keep in mind: my goal is not to demonize or shame people. A lot of the ableism I have encountered since I lost my “eye sight on 27th October 1997” are things
others with vision loss have been working to fix for generations. My ableist behaviours that I wasn’t aware of in the past can hopefully serve to open other
people’s eyes (blind pun unintentional). It was privilege that allowed me to ignore my lack of knowledge.
I used to be a shy and easy to inculcate ideas.

My goal here is to help and highlight ways that can become steps to build change. I hope that we, together, will be working towards understanding how us
actions and words establish an environment that puts up barriers, destroys ambition and steals independence.
Through this we can promote social inclusion.
What is being ableist or ableism? I will let you go to Urban Dictionary for a far better description than I could probably come up with:
https://www.urbandictionary.com/define.php?term=Ableism
.

Who does it? I know I have, my family, friends and of course random strangers do it. How does someone stop themselves from doing it? We, we can start
by not making assumptions, by asking questions, and recognizing that the person with the disability is the expert on their situation.

This is a huge subject, just like racism, sexism or any other form of bigotry – there are overt and covert ways it occurs. I don’t know enough to point
out all the different ways it happens. This paragraphs post isn’t going to be nearly long enough to cover more than some of my experiences (because that’s
what I know). Taking that in account, I want to explore it, make people aware and maybe stop someone from offending a person just because of their incorrect
assumptions.

Quick examples:

list of 5 items
1. It’s the person that thinks you can’t do something because you have you can’t see or have other ________ disability.
2. People that assume that when you blind you can’t even hear!
3. The person that just starts “helping” without knowing what you are doing or are able to do.
4The subtle and not so subtle ways people treat you differently.
5The people that think they are just more capable at doing things because you have ______. blind
6 The people that are sure they know a cure for my Blindness______.
list end7. Actors and comedians, MC
‘s who act as Blind or other disabled individuals!

check out Nairobi Memoires and get the life time experiences recorded in 2015 2016

I know what I am capable of (most of the time) and at times acutely aware of what I can’t do. Part of learning to adjust to living with a disability is
figuring that out and building solutions to make stuff work for you. It is sometimes a real challenge to find an issue and then coming up with a solution.
Everybody with a disability or impairment does this, even those who discover that the best option for them is to choose not to do something.

On any given day, in the city of Nairobi I have been grabbed by strangers (at least twice) in an attempt to give unwanted and misguided assistance. They grab my arm to guide me, grab
my cane to steer me and try to pull me into the street while I am waiting for the light to change.
One day my Whitecane brokedown after the push and pull!
Sometimes people have good intentions but at list communicate!
Recently I was chosen to be part of a focus group. Sometimes even in the job market when they see a blind or vision impaired person, they assume I couldn’t participate. Sometimes not given a chance to display the skills They thank me for my time and
sent me on my way. As someone that is Public scholar, I believe we have a long voyage.
, this reminds of what I will have to deal with.

Learning, problem solving, and dealing with a world not built to be accessible is hard and at times overwhelming. Then, you work through it and next time
it is hopefully easier. Having people that assume you can’t don’t make it any easier. Just dealing with people that make my mobility difficulties worse
can be exhausting. Finally, there is actually doing things I want/need to do.
I thank Canberrans for their humbleness and understanding.
You are guys from another planet.
I admire the communication when we meet.

To the Nairobians, the next time you encounter a person with a blind and vision impaired, don’t make any assumptions. Some of us have undergone through a pretty extensive training on using a white cane,
crossing a street and orienting ourselves while travelling.
Thanks to vision Australia and guide dogs am confident and I am able to travel with ease.

The same goes for people with hearing, physical, mental or any other disability. In some ways the folks with invisible disabilities have a much more difficult
existence. You look like you aren’t disabled to other people but meanwhile you are trying to find ways to make a world not designed to be accessible to
bend, and to not be a barrier to doing the things we want/need to do.

At the same time, about privilege. Some people have lived their lives without a vision impairment my way of adjusting may appear different
than someone that has dealing with this for years or a lifetime. None of it is wrong, the way you respond might be. Judgement, assumptions, and lack of
knowledge is what I feel are the greatest barriers.

Mugambi Paul is a public policy expert in diversity and inclusion.