Skip to main content

Disability acceptance and inclusion lessons from my Cûcû

In loving memory, ûromama kwega kuuraga 

Portrait tattoo image of cûcû with her headscarf at the front part of her shoulder length curly hair,  the hair curls on the right side are on a larger part of a muscle biopsy scar.

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, this would leave my sibling making the walk home with friends often only to realise that I wasn’t walking with my agemates ahead or behind their group but I’d remained behind. 
We celebrated the days when guka would meet us on the way in his Peugeot 504 KKC that he drove on the route and gave us rides home. It was blue, a beautiful blue. It is an easy colour to love when it represented such joy.

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

Oh the times mum would get home and then have to make the extra trip after her commute to work to get me. I don’t know how often this happened but I suspect it was quite often as mum eventually moved us to a school closer home with a school transport option that on the same route as her place of work then but I think we were only at the school for one school term. 

I loved my shorts growing up, still do, the constant comments about my “skuembe” from people around me were often shushed by you 
Just as you did anyone who attempted to pick on me for any “physical” reason. Little did we know all those years that for us these were signs of the muscular dystrophy in me. Now I were those shorts with pride.

You had me on dishes duty as I could do this seated down, I can’t quite remember when this started happening but it went on well into my later years that’s for sure.

I may have had other reasons for choosing Ikuma Secondary school for my teaching practice, perhaps those fond memories I had when I attended Ikuma primary school years back but cûcû’s love and care must have been one of the leading ones.
In the three or so months of the school term, the longest I was away was a weekend so we got to spend nearly all of it together. 
The latrine and bathroom are located in a lower part of the compound, around this time it was a big gamble at whether or not I would be able to rise myself up and it would be an understatement to say that toileting around this time did not come with its levels of anxiety and fears. Over the years I’d lost count at the number of times I had miscalculated my moves and landed bare ass on a latrine floor and had to either call someone to help me up or struggled back to my feet somehow and felt like I had walked too many kilometres after. 
At the school, there were also latrines so I couldn’t perhaps, you know, hold it in till I got home like I’d made the habit all through later years of primary and university when I would commute from home or held it in till I got to that toilet with a toilet seat on the other side of campus. 

For nights and early mornings if I wasn’t half-squatting behind the house while you watched our for the dogs, I was peeing into the bucket that you had placed in my bedroom. I can’t remember if we ever spoke about it and if we did what you might have said but this was one of those unspoken truths and beauties that made me feel so safe. I know for sure you didn’t make a big deal out of it if my lack of memory of it is anything to go by. 
I had less UTIs in those three months than I’d had in my adult life that far. 

My mornings with you were something else. I’d hear you wake up to milk the cows in the morning, you’d leave a sufuria with water heating up on the fire as you did this. This was my already to wake up and take the time as you milked to boot, clear my head. I’d hear you come back into the house and turn on the radio and this would be my signal to get out of the bedroom as you would proceed to pour this water into a bucket and carry it down to the bathroom for me, adding some cold water from the tank that collected rain water outside. 
There’s this stool that was inside the bathroom, I’m not too certain if you placed it there when I came to live with you so I would struggle to take a bath but I have a feel this might have been it. Your daughter, my mother, might have had something to do with it too, I’m not sure. 
I’d come back and get dressed and it wasn’t up for argument with you that I should have breakfast before leaving. You made sure I did. You have my cup of tea or milk ready, you’d even cool for me given I still can’t take hot drinks without burning my tongue, even now. There would be a fried egg on most days and slices of ugali from the previous night, ndûma, ngwacî or bread. 
On most days I remember you walking me to the road, sending me off with warm loving words after making sure I didn’t slide and land on my butt on the loose gravel that remained even after you swept ever so often to make sure there wasn’t any at the gate.
I have been dropping plates and cups it anything in them or empty as far back as I can remember. If you’re not offering me plastics, don’t blame me when they break. If I’m balancing these and making sure not to fall on my face or on my back, you can bet that I’ll drop them quickly for my rare chance to block the fall with my hands rather than my face or back or my head.
You always sent me off to sit down after had been in the kitchen catching up on the day’s activities or some stories of things that happened so many years ago no one can’t quite tell anymore if they’re just stories you made up to keep me entertained or they were facets of the stories of your life. You’d then carry whatever plate or cup for me as we continued talking into the night. 
When in other parts of the world, away from that home, people would be busy philosophising all of this and calling it disability studies, taking it apart and analysing it with theories and debates on end, you, Cûcû, made me enjoy what Mia Mingus has come to call “Access Intimacy” in a way that I have barely experienced with a handful of people all my life. 

Forever on my mind and in my heart, I am better for having had you in my life. 
Access Intimacy


Post a Comment

Popular posts from this blog

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…

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.