The Silent Cry of Altine...

Okay, let me admit, I’m not fully recuperated; but I just couldn’t stay away any longer! I need to keep my mind occupied! Lying down all day and night just isn’t fun! The rebel in me has won and I’m back!


Now, as I told y’all in my last post, I met a lot of remarkable persons at the Convention; but two of them stood out for me - Dr. Samuel Ankeli and a lady simply known as Altine. Before I say more about them, let me share just a bit of my thoughts and feelings from the Convention, and before that, first a bit of background.


JONAPWD stands for Joint National Association of Persons with Disabilities in Nigeria . It is an association of persons with various forms of disabilities including, physical / mobility impaired, visually impaired, deaf/hard of hearing, spinal cord injury, the developmentally challenged and albinos and so on. JONAPWD held her annual convention with over four hundred delegates in attendance drawn from all over the country.


This was my first time of attending the convention so it was quite a profound experience for me being in the same room with so many PWDs. As the program commenced and we waited for the arrival of delegates and dignitaries, there were musical interludes of Hausa music which I thoroughly enjoyed.


One striking thing was the diversity of disability on display even as the National Anthem boomed from the speakers…


..some could see and hear the proceedings but they couldn’t stand

…some could stand and hear but couldn’t see the proceedings

…some could stand and see but couldn’t hear the proceedings

…some could see, stand, hear but couldn’t comprehend the proceedings


That was deep for me…really deep; made me imagine all the challenges faced by the disability community in Nigeria , both at individual and community levels.


Trust me to introduce myself my style as I promptly got into an argument with some delegates about which disability was more ‘severe’ (without meaning to trivialize any disability). We were considering it purely from the viewpoint of vulnerability. But it was an inconclusive discussion (as is usual with such discussions), despite very many relevant point raised to support each viewpoint. Now, I’d really like to know what you my readers think. Is any disability ‘worse’ than others?


Yes, I did say I was going to say something about two humdingers. The first one, Dr. Samuel Ankeli is a visually impaired veterinary doctor, an activist for disability rights and a grassroots politician. He was the Chairman of the Convention Planning Committee. To be honest, the first thing that hit me smack in the face is just how handsome the guy is (Below is a picture I took with him….)

Dr Ankali and Duchess Irina

such beautiful but sightless eyes...yet such an insightful man

Sightless Dr Ankali is an expert at identifying beauty! I know, because I was his guinea pig! The first time we met, he went about his beauty-identification routine by first touching my nose, then my eyes, lips and then he said: “Wow! Irene you’re so pretty!” Yea, this blind guy identified my hotness so eat your hearts out! hehehe! By the second time we met, he could identify me just by my voice. A remarkable man Dr. Ankali is…very hardworking, brilliant, passionate, selfless…and oh so handsome and well built, smooth, suave, a perfect gentleman.

Now about Altine…just like Dr. Ankali, Altine is another sight for sore eyes…really pretty and with an amazing smile. She is however illiterate and speaks only Hausa, thank God for my fluency in the language (it’s my main language actually, next to English) I was able to chat with Altine in a sort of informal interviewish kinda frank way. What drew me to Altine is something that I just have to draw attention to. With the current North/South polarity in the country and the Muslim/Christian divide fuelled by the BokoHaramists, this is one sensitive issue, but I’m an advocate, so I must speak out.


Polio has ravaged and is still ravaging the Northern part of this country. As I said earlier, in all my years of living with a disability, I have never been in the same room with so many PWDs in my entire life so I had a lot of shocking moments when I witnessed certain physical conditions among the polio survivors. I was confronted with limb deformities such as I’ve never seen or suspected existed in my life, all attributable to polio. It took all I had in me not to stare, I would have taken pictures but in my line of work, preservation of human dignity is one of my personal and organizational core values so I refrained from taking photos and instead decided to use my imaginative and narrative prowess as best as I could to do an illustration. I will therefore attempt to paint a picture of Altine as vividly as I possibly can. As I describe this, I fight back the tears….


Altine is about 28yrs old, pretty and light skinned. Though an adult, she is about the total length of a child of 7yrs, she crawls on her stomach, using her hands to drag herself forward, her two legs are scissor like and crossed in the air behind her and pointing upwards. When she has to prop herself up, she uses her elbows and what’s left of her badly scraped knees as props and levers herself up to her destination, she cannot sit on her buttocks as the 2 legs are crossed behind her permanently so she resorts to lying down or half-sitting on her side.



In spite of her obvious discomfort, each time she passed by my seat, she would flash me a dazzling smile. The advocate in me got worried about the scores of badly misshapen and deformed conditions I saw especially among the women, so the researcher in me was prompted to ask questions and get answers.



Below is a transcript of my discussion with Altine….Brace yourself as you read….The entire conversation was conducted in Hausa language.


Me: (beckoning at her to come to me) How are you?

Altine: I’m fine aunty, how about you?

Me: I’m fine too darling, what’s your name?

Altine: My name is Altine

Me: Altine is a lovely name. I plan on giving my daughter the name (truth)

Altine: That’s nice aunty; hope you will invite me to be the godmother (laughs). Aunty, you don’t look Hausa but you speak it so well. Where are you from?

Me: (I laugh) Guess where I’m from Altine (I’m trying to loosen her up and get familiar)

Altine: Aunty I’m illiterate, how would I know? But I can tell that you’re not Hausa….Ok ok….you’re from Yorubaland

Me: (amid laughter) Wrong! I’m nyamiri (Hausa way of describing the Igbo) but I was born and brought up in Kano .

Altine: No wonder! You speak like a Hausa donkey (colloquial Hausa expression)

Me: Altine, but why do you and your friends (other women) choose to crawl on your hands and knees, if I’m able to get you wheelchairs, wouldn’t you rather be on wheels at least to maintain your personal hygiene (I am very big on hygiene)

Altine: Yes, some of the women would be able to use wheelchairs but some of us wouldn’t because of the peculiarities of our conditions. For instance, I used to use a wheelchair when I was younger, but my father sold it to be able to pay my dowry when I was being married off. Besides my legs worsened to the point of crossing behind me so I won’t be able to sit on a chair anymore unless you want to get me a ‘wheelbed’ where I can lie down and wheel myself (she laughs)

Me: (laughing along) Altine, so you’re married? Where is your husband?

Altine: Yes I am married aunty; been married for 10 years. My husband is not around. He’s a person suffering from leprosy.

Me: Hmmm…how old are you? Do you have any children and where are they?

Altine: I’m not up to 30 years, but I know I’m more than 25 years. (I pegged her at 28). Yes, we have 2 children (on further probing it turns out that both kids (ages 4 and 7) have polio as well). My husband has another wife with 2 kids too, they also have polio.

A long pause from me…I just couldn’t believe what I was hearing

Me: what do you do for a living?

Altine: I sell kolanuts

Me: Kolanuts? How much would you make in a day from sale of kolanuts?

Altine: Not much, sometimes 150-200naira, but it augments what I get from begging..

Me: You beg as well? *awkward silence* then I change the subject

Me: Would your fellow women like me to get wheelchairs for them?

Altine: Aunty any kind of assistance at all would be appreciated. But let me be honest with you, food comes first on our list of priorities. If you give us wheelchairs without food, we may sell them to buy food. Although we need the wheelchairs to help us get around, but will our children starve while we ride around in expensive ‘disabled cars’?(She’s referring to wheelchairs here) (laughter again)

At this point I was overwhelmed with emotion. Her colleagues were beckoning on her to join them, so I let her go. I asked if she had a phone, she didn’t, but said she would get a number I could use in reaching her and give to me the next day. I made a promise to get whatever I could for her and her womenfolk. She turned to leave and suddenly, as if on second thoughts, she held out her hand for a handshake, the same hand she uses to crawl past gutters, crawl into toilets, etc. I, the ‘germ fighting freak’, took her hand and even leaned down to give her a hug. In that moment I knew Altine had given me a test. She wanted to know if my ‘concern’ for her wellbeing was genuine. She had probably seen me sanitizing the seats, the banisters, the handrails etc so she wanted to know if I would walk the walk and not just talk the talk. I am so glad I didn’t fail the test. I didn’t fail the test because I am genuinely concerned for Altine and her womenfolk. Sadly, the next day we had crowd control and many of the local PWDs were not let in, so I didn’t get to see Altine again till I left but when I’m good and ready I will find Altine by hook or by crook.


I will speak very briefly on the issue of polio in Northern Nigeria. For how long will this continue? Women like Altine abound in Northern Nigeria. Her four children have polio and on further enquiry from locals, I found out that most women with polio have at least one kid with polio as well. I am making this a Northern Nigeria issue because I have never seen such polio-related deformity in the South. What is the reason? These women and their children don’t even stand a chance from day one of entering this world! They’re condemned to life as beggars, even when they have enormous potential. What are Northern leaders doing to address this scourge in their land?


I am by no means rich, but I am passionate about causes I believe in. As a single woman, I currently finance the education of three children with disabilities in primary and secondary schools in Abuja. They’re not in the poshest of schools, but they are in good schools and they are receiving a good education. I am a well-educated and independent woman today because my parents believed in education especially for me, the least I can do is give someone else that same fighting chance my parents gave to me.



Many times I have been torn between buying cooking gas at home or buying a new deep freezer or even buying a new blackberry or iPad and paying the fees or buying books for the children. Each time I ask myself, ‘Irene, which one will let you sleep at night?’….My answer has always been the same.



Since my return from Lafia, I suddenly feel inadequate, I feel like I’m not doing enough, I need to get wheelchairs for those women, I need to get food, clothes, drugs, for those women, but how? That’s the question….How?


I can’t get Altine's words out of my mind; I can't stop thinking that she has spent her whole life struggling with the challenges of an illness without the appropriate mobility aids for herself! And now, her children…. Altine has become for me, the voice of the polio survivors crying out for recognition…the silent voice that no one will hear unless we decide to listen….Are we listening?






Duchess

A Tale of the Hinterland...

Hello people,

At last, I feel slightly strong enough to pen down a few lines, after this I may take another few days off to recuperate fully but I just needed to put this down to let y’all know that I’m alive.

Before I say what I’m gonna say, I wanna apologize to anyone from Nasarawa State who’s reading this, no vex please, I’m just speaking my mind.

As some of you may recall, I’ve been talking about the National Convention of Persons with Disabilities coming up on 5th – 9th September in Lafia, the capital of Nasarawa, I’d planned to update my blog with a minute by minute update of things happening at the convention but when I got there my eye see strong thing! 

First of all, there was no internet connection, yeah you heard right, NO INTERNET in a Nigerian capital city in the 21st century. Ok, if you know me well, you’d know that I died and resurrected at the thought of being cut off from communication (blogosphere, FB) for almost a week; but there was nothing I could do, I had to stay put and endure my ordeal because I was at the convention to make my voice heard and my opinions count. 

I got back to Abuja on Friday and fell ill instantly... its almost as if my body were trying to purge me of all the ‘kondus melendus’ I may have picked up in Lafia. Ok before I digress, let’s get back to the main issue…

The hotel... in the entire Lafia there’s only one nice hotel, owned by the Governor. By my standards it is dingy (hope Mr. Governor isn’t reading this) but to others it’s the sexiest hotel, so make I gree. Let’s just say that while in Lafia, I faced fundamental health and hygiene issues from the hotel, to the venue of the event, it was one hygienic matter after the other. Believe it or not, I went thru a whole bottle of sanitizer and another of Jik and Dettol all in my effort to remain germ free. At some point I wondered if I had to drink the Jik sef. 

Abi should I talk about rats running around in the ceiling; abi the generator that comes on at 6pm and goes off at midnight, signaling the cockroaches to come party? Meehn! I suffered in Lafia sha… I had to stay awake one night keeping vigil with my phone torchlight because a cockroach flew past me, I knew he (makes sense that a cockroach would be male, abi) was still in the room and because I have a morbid fear of roaches, I couldn’t sleep till daybreak.

The glaring issue here is that we just don’t have a culture of maintenance in this country. The most fine-looking edifices are put up; very beautiful on the outside, but just go inside and see the mess they’ve turned into one year after being opened. No one bothers with its maintenance, yet you see young men and women milling about the place in droves calling themselves cleaners, and still the bathrooms stink to high heavens (I preferred peeing in the bush than in the toilet at the venue) 

In the first hotel I stayed at, I had to bathe outdoors before the break of dawn because, if my skin came in contact with the walls of the bathroom, I would definitely have had to burn it all off. So, I had two options, do 'dry-cleaning' (high school, sorry, secondary school parlance) or bathe outside for 4 days. Dry-cleaning means using a little water and possibly a face towel to clean ‘vital areas’ then use nice fragrances to mask any other 'fragrance', at my age I wasn’t gonna do that so it had to be bathe outside in the cover of night…

Another shocking matter for me was the fact that in a state capital city, there are no taxis only okada (motorcycles). Considering that 80% of delegates at the convention were either mobility or visually impaired, I was baffled as to what the organisers were thinking. Imagine someone who uses a wheelchair or crutches sitting on okada while the okada rider struggles to hold steady the wheelchair/crutch. Seriously, my friends how does a state capital not have taxis? *bewildered* 

Well finally sha, 4 days came and went, I had a nice time (barring the hygiene challenges) and made new friends in the process…

Drugs have kicked in so I’m gonna go to sleep now, hopefully tonight I’ll write up my experiences at the convention. I’m gonna tell you about 2 remarkable PWDs I met…a man who’s possibly one of the handsomest guys I’ve met in a long while and an amazing lady who’s a polio survivor just like me…I fell in love instantly...

7 things about me...

Hello people…hope everyone is doing great and enjoying the weekend. Well, after the emotional upheaval of the other day (akshuali it was yesterday), I’ve decided to ‘ease tension’ by blogging about less serious sturvs, I hate being too intense, not my style at all, so today’s blog session has nothing to do with disability.

Since my foray into BLOGSVILLE…I’ve been learning loads of new stuff about blogging and one interesting thing I’ve found is there’s something known as THE STYLISH & VERSATILE BLOGGER AWARDS. This award is given by seasoned bloggers to fellow bloggers whom they like or admire for their blogging style. According to the rules of the award, once its given to you, you’re supposed to say 7 things about yourself then give the award to 15 other bloggers. I’ve read a lot of acceptance speeches that cracked me up so bad…lol. Anyways being a newbie n all I’m obviously not eligible to receive or even give the award, but I liked the aspect of saying 7 things so that’s what am gonna do today. I also aren’t awarding 15 bloggers.

So, here are 7 things sturvs about myself, some of which are obvious and some of which no one knows…so y’all ougta be glad that I’m sharing some deep dark secrets with y’all.

Sturv 1: I absolutely love music. I’d probably be the unhappiest woman around if I didn’t have music. Everytime, all the time, when I’m sad, depressed, I just play music and it uplifts my soul almost instantly.

one good thing about music..when it hits you feel no pain...so hit me with music..

Sturv 2: I once toyed with the idea of suicide. In childhood and adulthood I faced a lot of challenges (gist for another day) which I had to overcome sometimes alone but most times with the support of my mom. So when she died I underwent a downward spiral emotionally and one night, I woke up crying and feeling lost, got a rope, tied it to the ceiling fan, got up on a stool, slipped the noose round my neck and….JUMPED! hahahahaha…just kidding…I no get that kind liver. What I actually did was to take 4 tablets of valium 5 instead of the usual 1 or 2, fortunately it didn’t kill me (I think I knew it wouldn’t) I just slept a lot. When I woke I was really worried at my suicidal thoughts and turned to my Bible…in the weeks after mom’s passing I was really unstable emotionally and psychologically but the Bible restored my sanity and stability.

every hangman's noose in my life be consumed by fayaaaaaaaaaaa!!

The Bible helped me heal..

Sturv 3: I absolutely love gisting, some call it gossiping but na dem sabi, lol. It doesn’t help that I recently reconnected with 2 friends of mine who love gisting even more than me. The other day we started gisting on the phone from 11p.m till 4a.m. just catching up on old times and you know… discussing many sturvs! To further buttress the fact that its gisting I love and not gossiping, I’m gonna tell a story, in this story I will attempt to illustrate the difference between gist and gossip.

Jamila’s husband buys her a brand new red colored SUV, she drives to the shopping mall in it, then stops over at Irene’s to say hello, stays and chats a bit then drives to pick her kids from school, and finally goes home. The End.

Illustration a: As soon as Jamila leaves, Irene calls Yinka and says hmmmm…Yinka guess who just left here now, na Jamila o! come and see the new car her hubby bought for her, its sooo beautiful, am happy for her, and its red, you know she always loved red, how thoughtful of her husband, kai! bla bla, bla…in fact she’s gonna come pick me and you tomorrow lets all hang out a bit. On the other end of the phone, Yinka makes some ooohing and aaahing generally pleasurable sounds, they agree on what to wear, time, and the call ends. That is GISTING!

Yinka on the left, Irene on the right...

Illustration b: As soon as Jamila leaves, Irene calls Yinka and says hmmmm…Yinka wonders shall never end! guess who just left here now, na Jamila o! she came in one red SUV claiming that its her husband that bought it meanwhile I saw that same car with Alhaji Umar 2 weeks ago, you don see dat tin wey I dey tell you? She’s dating him jare!! can u imagine? She’s just driving round the whole town doing shakara! She went to XYZ shopping mall, so that Mrs. A will see the car then she went to pick her kids from school at the exact time that Madam V picks her own kids! Mschewwwww…nonsense, rubbish! Does she think she’s better than us? Afterall your husband bought you a Mercedes 3 years ago! And she had the guts to say she’s coming to pick us to hang out tomorrow, if she near my house I go set fire to that car…on the other end of the phone, Yinka uses some equally explosive expletives, they both hiss and roll their eyes and the call ends….and that my friends is GOSSIPING!

Need I tell y’all that what me and my friends engage in is Illustration b, sorry illustration a! hehehe

Sturv 4: I exude a lot of inner strength but the fact is that I’m not always strong…I have many moments when my strength fails me, moments of unsurety (is that correct?), loneliness, etc. but I act strong cos everyone calls me a STRONG WOMAN and I don’t wanna disappoint them  

A strong woman

Sturv 5: My love for horror movies is legendary…my idea of a great weekend is, late at nite say 11ish midniteish, a good horror movie (lots of blood and gory slaughtering), all lights switched off, popcorn and a strong guy with broad shoulders. I love horror movies but I’ve never been able to look when the dumb blonde is getting butchered with a chainsaw or the automatic garage door is chopping off someone’s head, or the part I love most…when the dead guy comes back to life…the 3^rd time! Bwhahahahahaha (my evil laugh)

  

dont ever be home alone on christmas nite..

look behind you!!

Sturv 6: I may not seem like it but I have no patience for mediocrity, sloppiness and worst of all, bad grammar especially from ‘educated’ people and public figures. It really irks me when I hear people excuse horrible grammar in the name of ‘English is not our mother abi father tongue’ eeeiiissshhh! What’s that??? English is recognized as our national language! If you cant speak it, stick to pidgin English or your local dialect.

I should Abortion? showing on our airwaves (SMH)

Sturv 7: This Duchess is an unrepentant incurable romantic *shy smile*…I just lluuurrvvss romance and romantic stuff. e.g. in Nigeria giving your girl flowers is considered corny, silly and ‘un-Nigerian’ but I love love love it! but no be flower I go chop sha...

awwwww...*sigh*

 Sturv 8: I know I’m supposed to stop at 7 but what are rules if they cant be broken? I have a number 8 jor. I am very playful yet underneath the playful unserious exterior lies a cerebral (if I may say so myself) and serious-minded beautiful girl, the playful side is the more dominant character though because I purposely choose to be happy and exude happiness but I get brain small sha… Some people know both sides of me, others know just the one side and think the other side doesn’t exist...big mistake!

beauty and brains...darriz me! dont hate! hehehe

Can’t resist the temptation to add a very very very imporrant Sturv 9: I love FOOD…cooking it, baking it, grilling it, frying it, steaming it, roasting it, worrevaing it and EATING it!

glorious food

chocolatey heaven

my workshop

there...so that’s 9 things sturvs you now know about me….lol...back to serious stuff in my next post..

My relationship status: Single...not Hopeful

Hi everyone, today’s post is actually a rant…I was gonna blog about something else but an incident happened this morning that really upset me and I just wanna rant..so I’ve archived the initial post for another day…maybe tomorrow or the day after. As I type this, my anger has subsided and I’m in a mellow state of mind but it’s a rant nonetheless.

What happened this morning: While commenting on a post in one of the social media, someone called me ‘hopeful’ in referring to my relationship status. He gave other options of single, married, widowed, single mom, etc…then specifically called me ‘hopeful’. My analytical side kicked in instantly, analyzed the statement then typed up a scathing response, which I eventually toned down on a second read. To my mind he feels I don't fall into the category of SINGLE obviously because I have a bad leg, so he created a new category for me called hopeful. I found it very rude, offensive and condescending...I don't care if he was joking (as they usually claim when they act  thoughtlessly) that was a totally tactless and tasteless 'joke'.

I have been mulling over this...did I over react?? hell no! I am certain I did not, as a matter of fact I think I under-reacted. All my life I grew up feeling like I’m not good enough just because I had a weak leg and walk with a limp, I’ve been taunted and abused physically, sexually, emotionally and mentally from childhood because I had a bad leg..as I entered into the dating scene, I was always plagued with fears of not knowing if a guy loved me truly or wanted me just for my butt or my brains, or even to get money from me (not that am rich o) I’ve been through a lifetime of not knowing if I was loved as much as I was loving and giving. I’ve had guys make me feel like they’re doing me a favor being with me and girls actually telling me to my face (during a normal cat-fight) that they can leave their man with me and sleep easy because I’m not a threat since their man wouldn’t touch a ‘cripple’ even in their dreams…Oh! how tempted I was to prove them wrong but thank God mom raised me not to be vindictive. Many times I cried at night because I couldn’t understand how a guy would say to me, ‘I love you’ then turn around and go dating my friend right before my eyes. I have been in situations where I felt like I had to give sex and/or money that I didn’t have, just to make a guy stay with me and love me, needless to say I know better now. I don't need anybody to tell me who/what I am..I know that already...and I don't allow anyone or situation define me either...but those were hard times for me before I built self esteem and confidence and memories like those don't go away so easily...

All these could very easily have happened to any girl but the experience was made worse for me because of my ‘disability’. I had a tendency of attributing my love mishaps to it and it nearly turned me into a cynic, never believing in true love, it also made me stay away from guys who even had noble intentions…this has obviously played a huge role in my being single because I just haven’t met someone whose motives I’m 100% sure of and because I am looking for unconditional love.

Like every NORMAL human being, I get lonely a lot but I am not desperate enough to enter into a relationship where I am the only one struggling to make it work because some guy thinks he’s doing me a favor by dating or offering me marriage. So maybe in a sense I am hopeful, but that is merely a state of mind, i'm hopeful I'll find a good, loving, faithful man, hopeful he'll love me the way I wanna be loved, hopeful God will bless us with long life and a great marriage, hopeful for many things...but my relationship status is SINGLE, not hopeful.

I see this a lot, people saying insensitive stuff to their fellow humans without a thought for their feelings. People have committed suicide because of harsh words or taunts from people around them. I believe this guy owes me an apology, but true to form, he didn't and probably never will...

I started this blog to educate people about disability. I will use any means necessary to send this message including sharing my innermost thoughts, feelings, desires, etc. Like Martin Luther King or Rosa Parks (yea, I’m hoping to attain icon status soon so don’t hate, lol) I may not live long enough to see the CHANGE in societal attitudes that I deeply desire but if this blog will make someone somewhere realize how powerful spoken/unspoken words are, how sensitive some circumstances are and how badly treated people with disabilities are, if I can make someone somewhere think twice before saying/doing hurtful stuff to anyone.. disabled or not..then I will keep writing and keep blogging and I urge you to keep reading…

As Dr Phil would say...Sometimes you just got to give yourself what you wish someone else would give you....

I leave you with this amazing song from an amazing icon of disability, Mr Pendergrass…I call him Teddy...I particularly chose the video where he’s in his wheelchair…enjoy..

What is my Disability???

Its 2.20a.m Nigerian time and I’m nodding my head to the awesome tunes of Luther Vandross, Cyndi Lauper, Patti Labelle, and Frank Sinatra…yea you heard right…am an old school freak going way back into the Sinatrasque era, I’m sipping my 3rd cup of ORGANOGOLD gourmet latte while updating my blog. Just got some amazing blogging tips from a great friend who’s a seasoned blogger herself…so I've been up all night 'pimping' my blog...check out the new features...take the latest poll, listen to my kinda music, just generally enjoy what i enjoy on a daily basis...if you love old school music like me, then do a search for this song on YouTube and just sit, tap your foot, and nod your head...Me and Mrs. Jones...(we got a thing goin' on)...by Billy Paul...damn! its pretty old but its crazy mehn! every time I listen to it I get goosebumps!

Anyways I’m yawning already so this is gonna be a really quick one (yea right! I always say that then end up writing an epistle, hehehe!) I talk too much I know, na only God fit save me..now back to the issue at hand, the thing is I can’t believe I haven’t mentioned what my disability is so far on this blog. Damn! Talk about old age…I totally forgot! Well thanks to 2 of my commentators abi na commenters (Elcy and Olori) who reminded me abourrit I’m pleased to announce that yours truly is a POLIO SURVIVOR. I suffered polio at age 3 and struggled with it through a couple of successful and unsuccessful surgeries and here I am today, still standing strong in spirit, though not so strong physically (a feather could lift me off my feet) but don’t be deceived, am physically strong in some other sturvs o *wink* (ok, hope y'all recognize that 'sturvs' is a joke...when I say it I'm akshuali mimicking our youthful youth of today who murder grammar both with spellings and pronunciations)

By way of educating y’all (which is the main purpose of this blog) here’s a simple definition of polio. Poliomyelitis is a communicable infectious disease caused by the polio virus of the genus Enterovirus. It causes inflammation of motor neurons of the spinal cord and brainstem, leading to paralysis, muscular atrophy, and often disability and deformity. It is also called polio. Childhood vaccinations are given to prevent infection. 

Note to the ignorant: For those who use the words ‘disabled’ and ‘deformed’ interchangeably, listen up!... they are NOT the same! So the next MUMU that refers to me as a deformed woman will have my palm imprinted permanently on their ignorant faces! That's not to say that persons with deformities deserve to be addressed in a rude manner either...its just absolutely important that people educate themselves on appropriate ways of addressing people to ensure stigma reduction.

My 'disability': To be honest, I was reliably informed that I was vaccinated against polio so even I am baffled as to how I gorrit, well e don happen, e don happen wetin pesin go do? My parents were educated, my mom was a nurse, all my brothers and sisters were vaccinated so how come the brightest, beautifulest, charmingest and of course sexiest one is the one that got polio?? I sense some winshry but no wahala sha. God dey! 

Anyway, so polio affected my left membrum inferios leading to weakness in the femur, tibia, patella and fibula…the gluteal region also is affected. Oh dear, pardon me pls.. I forgot not everyone is as prolific as I am at using big words…lol! In simple English, the polio affected my left leg and resulted in little or no muscular control. I hope I have succeeded in confusing y’all. 

Additional information: Obviously every disability has its attendant complications, in my own case, little or no muscular control meant less movement which led to sedentary lifestyle and which led to weight gain bordering on morbid obesity (I imagine people taking another look at my profile photo, hehehe...forget the seemingly slim facial shots, it spreads out as you go lower, lol) culminating in impaired mobility. Due to this mobility impairment, I have used mobility aids ranging from wheelchair to a cane most of my childhood and adult life (gist for another day).

Nevertheless in spite of everything, i have a sound mind and excellent spirit which even some 'able-bodied' persons can only dream about. So in essence...when I am asked 'what is your disability?' my polio-related response tells you why I walk with a limp, but the truth of the matter is that I am not disabled...I am 'diffferently-abled' lets face it...some of the stuff I can do, y'all can't do it...hehehe...




There..that was short and simple abi?? Now I’m off to bed abeg…when I no be bat abi vampire!

On a very serious note, thanks to all of you for reading me, giving me feedback and even telling pple about this blog…I have some serious gist for y’all in my next update (I don’t even know when that will be) but stay tuned sha..

Ciao…

Update...

Hi everyone, it’s been a rather hectic week since I launched the blog..been here and there - doing this and that…so tonight I find time to update my blog. One scary thing is the UN Building Bomb Blast that happened earlier today, meehn! that shit was scary! I was at the UN House at 11a.m. the previous day, and I was supposed to go back next day (Friday) to pick up a document, but my colleague at the UN called me later in the evening to say because its half day at the UN on Fridays the document wouldn't be ready because the person who would sign it was out-of-office...bla bla bla so it would be better if I came in for it on Monday, I got upset and kept raving and ranting, now in retrospect, I realize that, that delay may very well have saved my life. Wow! Thank God for His mercies. I lost friends and colleagues in that tragic incident though; I don’t understand why it happened I can only pray to God to grant the souls of all the departed peaceful rest, and full and quick recovery for the injured, Amen.

Like I said on facebook, men and women who work in the UN are humanitarian and chivalrous, their work brings succor and hope to the needy, and their lives didn’t need to end in such a senseless manner. They are heroes, nothing less. This beautiful song by Sarah McLaughlin and Josh Groban (in the arms of an angel) is dedicated to all our fallen heroes in the UN Building Bomb Blast…it was indeed a BLACK FRIDAY…

click here: http://www.youtube.com/watch?v=zZHrbjhwKik

One good thing though is that I’m feeling really good about this blog, I’ve had a lot of positive feedback so I’m encouraged to keep going…Not gonna write much today…just wanna share stuff that happened over the past few days that absolutely turned the waterworks on in me…2 separate incidences.. 

I have this facebook friend, let’s call her Eka, she lives in Germany, we’re really good friends, always supporting each other and advising each other and just generally being there for each other and because I don’t normally announce it on FB (gist for another day), she had no way of knowing that I have a disability.

So, I do this note about the disability bill and I tag her on it and for the first time she gets to know that her friend Duchess Irina is a PWD. So she calls me up almost immediately and asks me why I kept it from her, I explain to her that I didn't 'keep it from her', it just never came up in any of our conversations and I just didn’t see the need to bring it up as a separate discussion, because disability doesn’t and shouldn't define me, one shouldn’t have to introduce oneself as ‘hi, I’m Irene I have a disability’..she asks me what kind of disability I have and I explain…suddenly she breaks down and starts crying, apparently her 13 year old daughter has a physical disability too where one leg is considerably smaller and shorter than the other, she has broken the leg twice, so it is a good 2 sizes smaller in shoes and 5 inches shorter in length. Eka shared with me how as a mom, it tears her apart inside seeing her daughter wear shoes where one shoe leg fits snugly while the other leg has to be dragged along cos if she lifts the foot the shoe would fall off. This of course affects her movement and attracts taunts from other kids and made the little girl more conscious of her disability than necessary. And so my friend Eka resorted to swapping shoe sizes in the stores when she goes shopping cos she couldn’t bear to see her daughter suffer so much, i.e. when she buys a size 7 pair of shoes for instance, she would swap the right leg with a size 5 of similar shoes giving her a pair of shoes with sizes 5 and 7 and hope the checkout cashier doesn’t notice.

By the time Eka finished this story, I was also in tears cos memories come rushing back of how my late mom (God rest her sweet soul) would have done the exact same thing just to make me feel comfortable and ‘normal’. 

The 2nd incident happened a few weeks ago with my neighbor’s 6 year-old who is also a polio survivor, her daddy called me to help him convince her mom to let the kid go to school because she’s shielding her too much. Apparently the kid was being taunted in school and just the previous day at a children’s party she was dancing with the other kids and one of the bullies started mimicking her movements, she ignored him and that infuriated him so he pushed her down and called her cripple. Based on this she said she wouldn’t go to school anymore, while her mom was in support her dad was more matter-of-fact and wanted to take her back to school and lodge a complaint with the school authorities. The mom’s obstinate behavior was the reason he called me to intervene aside from the fact that I’m one of ‘his daughter’s kind’.

Well, I asked daddy to give the girl a break for that day and I took her home with me, bought her ice cream, played video games with her, she spent the entire day with me and kept asking all kinds of questions which made me cry because once more she reminded me of me. The most touching question she asked is, why doesn’t my daddy love me? Apparently she felt that by wanting to take her back to school (and possible taunting) her daddy didn’t love her…while trying hard to fight back my own tears, I explained to her how much both parents love her and the reason behind their different reactions/decisions. Suffice to say she went back to school and is doing her best to cope with bullies. This made me decide to dedicate a couple of blogging moments to discussing how children with disability can cope and the role of their family members in easing the experience.

For today however, I’m gonna end this by dropping a list of acceptable terminology for addressing persons with disabilities. I was truly shocked to learn that in this day and age people still use words like ‘cripple’ to refer to a person with a mobility impairment, much less used by a child to refer to a child. What are parents and schools teaching their wards these days? *bewildered and SMH*




Happy reading...see you around...




Appropriate Terminology...

When it comes to the issue of how to address persons with disabilities, we must realize that words hurt. Words carry power. A person can use a terrible word in a context that still shows that they respect the person and conversely use a first rate word and show no respect - so sometimes context is important.

Some would also argue that it depends on the preference of the Person with a Disability (PWD) on what they want to be called. I also go by the rule of letting the PWD take the lead in what they want to be called, however it is important to always use "people first" language - and this is NOT about PC, it is about using language to empower and dignify a human being. Politically correct means most often it has been accepted by people with disabilities themselves. Language is fluid and malleable - it changes.

The most politically correct and widely used term is 'disabled'. Most of the alternatives are considered inappropriate. There are some words, three especially, that have been rejected nearly universally - retardation and any derivative like retard, retarded; spastic and spaz; Cripple and crip. Just like the N word is used between peers - spaz and crip are used between close friends. However the word ‘retard’ is not used by anyone to describe themselves. 

Below are examples: 

1. Use "person with a disability" or "people with disabilities" person who uses a wheelchair (who is in a wheelchair) and NOT a "wheelchair person".

2. Use ‘’Person with developmental disability" (or intellectual disability) and NOT "mentally retarded". 

3. A blind person is either blind or visually impaired.

4. A D/deaf person is either deaf or hard of hearing.

5. A Deaf and blind person usually prefers the spelling Deaf-blind. 

6. A physically disabled person is physically disabled. In this context, it would be appropriate to use mobility impaired to signify the person's limitations. 

7. A wheelchair user is not wheelchair bound or confined to a wheelchair. You can either say that the person is a wheelchair user or you can identify them by their specific disability, e.g. Mr X has paraplegia. 

8. If a person is disabled due to chronic illness, ‘chronically ill’ is fine, or just disabled.

9. A person with a cognitive disability is just that- cognitively disabled.

10. A person with Autism is a person with Autism.

The word ‘handicapped’ is offensive to almost everyone as it implies that one is unable to do most things and this is not true of PWDs.

The idea of being ‘challenged’ emerged about 10 years ago and is condescending. People with disabilities are not challenged - you are challenged to play chess and one of you wins - disabilities you live with - you struggle - you face them head on - and there is no winning - there is only learning to accept and move onward. 

People who have cognitive disabilities have embraced the term self-advocates. This refers to the fact that they want to make their own decisions - they want others to stop making them for them. 

Some people who are autistic, blind, deaf, and a few other disabilities embrace their disability as a minority identity. They are not dismissing the fact that they are disabled - but they are dismissing it as a negative experience. I am autistic. I am deaf. I am blind. I am disabled. 

The most important thing is to make sure that one is sensitive in communicating with the disabled, when in doubt, just ask poilitely, ‘how would you like to be addressed?’

Useful links: 

Disability Language Style Guide: http://www.ncdj.org/styleguide.php

Disability Etiquette: http://www.nawcwd.navy.mil/hrd//disabili…