Friendship and Disability...

(For Eunice Itakpe Iranloye)

‘The worst solitude is to be destitute of sincere friendship’. - Francis Bacon

It’s been a hectic week for me, but I couldn’t wait to get back here! Today I’m talking about friends…yes, friends…those special people that come and go in one’s life and leave long lasting impact/memories. Good friends are part of the overall support network we all need. I know that there are several qualities that keep great friendship going, but for me, humor is key. Life is filled with all sorts of stress that being able to laugh at it and laugh at oneself is the antidote. Indeed, I’m not sure if it is really by accident or design that humor has been a great attraction for me to others; but I just have to laugh and I have to do so with people I love and who love me in return. Apart from my family, the only other people that crack me up in a good and wholesome way are friends!



For a person living with a disability, developing friendship can be a difficult enterprise. If you develop this disability early in life, it could determine the type of people that choose to associate with you. For instance, my childhood memories weren’t really fond ones. From my primary school days, I was constantly teased, bullied and taunted by kids my age. I would be walking to the classroom on my own when suddenly a boy would come knock me down and take away my calipers. I would lie in the dirt crying until news would get to my elder sister who was a class ahead of me in the same school. She would come running down with her own group to protect me from these bullies and even get into fisticuffs with some of them on occasions!

Frankly, despite being a very smart kid, I hated going to school, especially if my elder sister wasn’t going. I had little or no friends and buried myself in books. I was enrolled for the Common Entrance Examination at the age of 9, a class before the recommended eligible class. I passed in flying colors and gained admission to Federal Government College Kano on National Merit and earned with it a one year scholarship. However this held no real meaning for me, unlike my parents and siblings who were ecstatic, I was filled with fear and trepidation at the thought of being bullied and maltreated because of my experience in primary school.

But it was in secondary school I began to understand the value of friendship. Though, I began by resolving to stay aloof and maintain my distance from fellow classmates so as not to create any avenue to be taunted and teased; yet, my defences wouldn’t stand firm, thanks mainly to some schoolmates who cultivated my friendship without reserve. Today, we still keep that friendship and even where we lose contact a few months, a few years, whenever we reconnect, it is like no day was lost! This is because they have never made me feel ‘different’ around them, never pitied me or make me feel I’m not good enough. We share each other’s deepest darkest secrets, fears, hopes, aspirations, and loads of gossip and laughs and in their company, my disability is never an issue.



Apart from my friends from Federal Government College , Kano , I have made friends with several other people, male and female, from university and through work as colleagues and so on. But what the secondary school experience of friendship gave me is the confidence to cultivate real friendship with others without fear or suspicion. My friends then therefore remain the rock upon which I’ve built other friendships over the years.

At this juncture, I would like to pay a special tribute to a great friend from my days in secondary school who isn’t with us anymore. I had set out to write this without naming my friends, because I’m confident enough that they know themselves and do not need me to advertise them! However, one exception to that rule is Eunice Itakpe to whom I dedicate this post on friendship. Eunice died two years ago in Gambia from childbirth. She had been married for years, suffered several miscarriages, but the one she carried full-term finally claimed her. Eunice was a strong, brilliant girl who went on to become the Head Girl. Without making it too obvious, she looked out for me in every way. I recall her assigning a junior girl to permanently fetch water for me and run errands for me. Her friendship and loyalty were inspirational. She was patient, always had a listening ear and words of wisdom for all occasion. Nothing ruffles or panics her, a real rock. No day passes by without me thinking of her and the great memories we share along with my other friends. But I’m comforted knowing she’s in a good place. But she is one of several friends that have molded me and made me into the strong, happy person I am today. I’m mentioning her specially, because this post, as I said, is dedicated to her.


My Headgirl..Eunice Itakpe Iranloye

From the above, I’m sure readers are already getting the idea that if persons with disabilities are to form friendships and be a part of society as adults, these relationships must develop during childhood. I didn’t have much of that in primary school, but I was lucky to get it in secondary school and take it from there and spread it out to the rest of my life outside school. Classmates and neighbors will grow into adult co-workers and friends later in life. Therefore, integrated classrooms and recreational activities are important. In these settings, children with and without disabilities go out to meet each other and form relationships. It is burden enough being disabled, but keeping disabled kids away or excluded can only make things worse. Jamila, one of my closest friends from Federal Government College Kano recently said to me: ‘Odis, there was nothing different about you, I think the greatest thing your parents did for you was throwing you in boarding house with the rest of us and not shielding you from life!’ She’s right. My life experience confirms this and in fact, it does not only work with disabled children, but with other children who find it difficult integrating because of taunts and bullying of any sort.

For instance, few weeks ago a neighbor of mine asked me to intervene in the matter of his little girl who refused to go back to school because of taunts. I thought about this and wondered what to say to the girl and her parents. However, one thing was obvious to me. She was disabled, so I knew that she was suffering the same psychological trauma I suffered when I was younger. I knew she had no choice, but to face up to the challenge and build friendships, no matter what. But she needed the support of parents who wouldn’t be shielding her from the world! So, I sat both parents down and asked them to make it a point of duty to assist, encourage and guide their daughter to cultivate relationships and strong friendships as that is the only way she would be able to fit into society seamlessly and not feel different. It was a simple advice they took and I’m here watching out for the result. Everyone is capable of suffering rejection, disabled or not. How we choose to cope with it determines how we conquer it!

Back to the specific challenges of disabled persons in cultivating friendships, I want to point out that sometimes the way families and health professionals intervene sometimes make things worse. For instance, a tendency to focus more on physical and academic challenges than on creating opportunities for friendship and communication with their mainstream peers and one another could be counter-productive. A healthy combination of medical intervention and social integration would help such children better. Programs must be developed to make disabled children spend time with other children in an atmosphere that can build empathy and respect amongst them. As sweet and simple as my friendships with non-disabled people may sound, it isn’t without its own difficulties. Many individuals with disabilities interact primarily with their family and healthcare professionals, because they are the people who take care of or provide services to them. But they will leave these programs at some point and relate with others outside family. Preparing them early is key to their future happiness.

Obviously, mothers do have a great role to play in this preparation. Due to their special role as primary carers, it is crucial that they are carried along. In Nigeria , mothers of children with disabilities are a missing voice, as they are often absent from mainstream mommy related school or leisure programs due to their children's therapy and medical appointments and early intervention activities. Mainstream children's earliest social contacts are often with children whose mothers meet while they are pushing strollers at the park or shops, at neighborhood playgroups/kiddies parties or daycare centers. When the mom of a child with a diagnosis is not included in the mainstream of their community, children with special needs don't have those early interactions with their mainstream peers.

Mothers staying integrated in mainstream programs and neighborhood activities can accomplish as much for a child's acceptance and future friendships than artificial inclusion in mainstream classrooms because the children do not need to be 'introduced' thus setting them apart from the onset



As children grow up together, it is rewarding to see how natural positive relationships develop that benefit their classmates as well. Children with disabilities or special needs can be very important to their friends who also are overscheduled and overwhelmed, and who struggle with their own challenges that are often not acknowledged or accommodated.

Adults can make choices that help all children get along better together, reduce or eliminate bullying behavior, and provide options for those who find themselves in difficult situations. These choices often include a plan and a commitment to creating a respectful and safe environment, where children have access to grown-ups they trust to have their best interests at heart.

Often, when there is no plan and a commitment to create a safe and friendly environment for a child with special needs, mainstream peers are left on their own to figure out how to deal with one another. Most children and adolescents experience loneliness, fear that they will not be accepted if they allow others to know their authentic selves, and confusion about what they are supposed to do in even the most casual situations. Staying involved with other school/neighborhood moms teaches us that all families sometimes need a little help from their friends, and would like to create a safe and friendly atmosphere where their children are welcome and appreciated.

In conclusion, I acknowledge that generally, many people with disabilities face certain disadvantages in meeting and getting to know others. These disadvantages include, but not limited to the following:

Opportunity: Many people with disabilities have limited opportunities to take part in activities where they can meet peers. This may be due to physical segregation or being placed in a role as "clients" or "special education students." Services may restrict people's chances to get together through program rules, curfews, transportation restrictions, and other limitations. Whatever the reason, people with disabilities frequently become cut off and isolated from others. I think one way of cutting down this disadvantage is, as I explained above, opportunities for friendship with non-disabled persons. This has to necessarily be built into intervention programs.

Support: Relationships between people with and without disabilities are not formed by simply grouping people together. Some individuals need assistance with fitting into certain settings and activities. Others may need someone to facilitate their involvement or to interpret for them. Without support, some people with and without disabilities may never have the opportunity to know each other. Again, this will require specialist psychologists who would notice this and provide special programs of integration for struggling kids.

Continuity: While most people enjoy meeting new people, they are sustained by those they have known over time. The continuity of relationships over the years is an important source of security, comfort and self-worth. Many people with disability do not have continuous relationships. Instead, they may leave their families, be moved from one program to another and have to adjust to staff people who come and go. Again, this problem can be addressed by making sure that kids that have developed relationships with others aren’t cut off from each other. If there is necessity to separate them for program development purposes, avenues should still be created for future get-togethers and interaction. That is the way bonds and friendships are sustained.

Disabled people know there’s a lot of prejudice out there; while I am not advising that they go out and foist themselves on people as friends, they have to understand that there are also many people willing to be their friends and willing to love them for who they are, not pity them because they are disabled. If disability affects a part of parts of your physical body, develop other aspects of you, including the mental and let people see that you aren’t just a sorry sight! Having friends is important for everyone, not only the disabled. So, do not let your disability hinder you from enjoying the friendship and company of others! The organized disability community should also try to do something about this and must include in its programs activities that involve non-disabled people. Friendship is as important as independent living, employment, civil rights and all the rest. It's a lot harder to achieve when you’re feeling sorry for yourself or acting insular! Maybe that’s why I’m on a lifelong quest to make more and more friends! Catch them young! We can show children and teens with special needs and their mainstream peers how to make and keep friends by modeling friendliness and creating an atmosphere and structure of inclusion, cooperation and respect

I end this post with this song…the best things in life are free…including the genuine love and care of friends…thanks to you all for being MY FRIENDS…

Duchess...

The Forgotten Ones: The 7-Point Agenda

So, I’m back from Lafia and now straight into the unwelcoming arms of some tasking piled-up weekday work on my desk! I had looked forward to a good sleep and catching up on movies over the weekend, but there is no rest for the wicked it seems! Work, writing proposals and of course, blogging must be done! I sigh….

“The Forgotten Ones” was initially the title I thought of to be my story about Altine; but I’ve decided to use it now to speak generically about the problems of her kind, my kind, because there are hundreds of thousands of Altines out there crying out for help and I just think focusing on her, just because I was in close contact is to muffle the cry for help of all others in similar state. Obviously, I suffer from disability too and can class myself with her, but that would be totally unfair, as it boils down to degrees of disability, means and access to required help to make life better. I see my role as using my mental and material resources to raise awareness of the plight of the most vulnerable in our group.

Okay, before I get on with the main purpose of this piece, a little update on my illness for those who’ve been asking about my health is in order. First, a little confession….I’ve been self-medicating almost to my detriment! You know, old habits die hard as I’ve always prided myself on being very ‘healthy’. I don’t fall sick easily, I haven’t been inside a hospital in 10 years; so, I beat my puny chest proclaiming that my immunity is so high that when the occasional ‘flu’ strikes, I swallow a couple of pro-cold tablets, eat pepper-soup for a few days, take a nap and spring back into action without fuss. This time though, after doing all that, I just wasn’t getting better. I started running high fevers and my chest was wracked with a horrible cough! The superwoman was crumbling before my very eyes, yet, doggedly, I persevered in my self-medication! Concerned relations and friends waded in. “Go see a doctor, Irene!”, they clamored. But I always found something to say to ‘convince’ them I didn’t need to. “Stop the drama, people! This is just a little catarrh that will soon run its course!”

Luckily, not every one of my friends allows me get away with stupidity! A good doctor friend of mine didn’t buy my tales! You want to know his name? No! He’s too shy to be mentioned in a blog (wink, wink). He insisted on feeding me with antibiotics and within hours, and I mean hours, I was feeling as good as new! Fever down, cough gone, sore throat missing, nose cleared! It was a miracle! Apparently my Lafia sojourn had left me with some respiratory tract infection and this Dr Magic knew exactly what I needed while I dosed on my old routines! Moral of the story? Even if you’re as healthy as a prancing horse, self-medication is no good! Here I am, a new convert to the Anti-Self-Medication League, feeling as good as new and able to put pen to paper, my itching fingers to a keyboard without sneezing up my computer screen!

One good thing though, I think I lost a teeny-weeny bit of weight due to this illness. How did I know? Well, a few weeks ago, in my bid to look sexier and trimmer, I acquired the garment popularly known as Body Magic. I paid for it and waited 14 days to get it shipped to me from the U.S. It got to me in good nick, only for it not to fit! What!? The largest size in the market and it didn’t fit? I tried all I could, got two hefty male relations of mine to stuff me into it, no luck! I gave up, got depressed and said to myself worrabloodyheck! I turned up my nose at the rebellious garment and seriously began bingeing on ice cream, chocolates and all sorts (just kidding)! Then I woke up one morning (after my Lafia adventure), spied the garment where I’d tossed it in annoyance, picked it up, tried it and voila…it entered! Okay, it wasn’t exactly a perfect fit, but at least I was able to get into it! I did a jig in celebration and pumped my fist in victory, but that was until I attempted taking it off! Wahala! Let’s just say I still have a long way to go before I can effortlessly use that garment. I’ve put all the blame, every bit of it, on that Ardyss Company for not making garments large enough for people my size! After all, I’m not that big, or am I? Okay, maybe a little blame should grudgingly go to my massive backside that can’t seem to fit into anything (lol).

While we’re still on the matter of updates, I’m pleased to announce that 48 hours into the Petition, we hit the 100th signature milestone and still counting. It’s not much considering I thought I had many loving, caring, friends who would lay down their lives for me (I guess I thought wrong). But, seriously, it’s a great start. It means a considerable number of people have heard about the Petition and are spreading the word. Little by little, we’ll get there.

Now, just as I intimated earlier, I would want to share with you some of my thoughts on what I think the problems are generally with our official and societal treatment of PWDs and what I think needs to be done to address this problems and make our society a more caring and considerate one. While I am not by any means saying only women with disabilities should be our focus, the Altine story is my springboard for this discussion and my narrow aim here is to focus on the challenges of women with disabilities, even though a lot of what I’ll be saying applies to both sexes in varying degrees. I’m doing so, because I believe disabled women are evidently the more vulnerable and treating them as priority can go a long way in changing the face of the problem generally. I’m not going to get into giving any technical background, because I want to make this as simple and straightforward as asking people to encourage others to understand the issues as they are and make recommendations:

1) Lack of proper facilities for physical therapy for PWDs: This is the natural place to start, because the disabilities we speak of here is physical and lack of facilities for physical therapy is a core problem aggravating the conditions. For instance, Altine’s legs were not that bad 10 years ago, but they steadily worsened due to lack of proper medical attention and physical therapy. I experienced the same thing in my own case. I added weight as my leg worsened. Now I’m battling both weight and leg. Ideally, facilities should exist to ensure that physical disabilities do not degenerate into worse conditions.

2) Poverty: When I speak of poverty here, I’m not talking of the general poverty in society that a lot of our countrymen and women grapple with daily. I’m talking of poverty as a cause and consequence of disability, especially in the case of diseases-related disabilities. For instance, Altine had a wheelchair donated to her early on in life; but in order to ‘get rid’ of the burden she had become, her only dignifying means of mobility was sold off to buy her ‘kayan aure’. Maybe if my parents had not been educated nor have the means, I would have been in the same situation.

3) Social conditioning and lack of choice: It would seem that disability at a level condemns some of our countrymen and women to a life in which they have no say, with choices made for them by persons supposedly caring for them. The consequence of this is that in certain situations, such choices made for them make their conditions worse and condemn them and their offspring to even a worse condition. For instance, Altine was married off to a person living with leprosy, because her folks felt that was the best they could get for her in her condition. The cultural pressure to be married and go on to raise a family of her own while offloading what they possibly considered her burden on them dictated such a decision. She had no say in it, because of her condition. While I fully understand that sometimes it isn’t within the power of the disabled person to choose an able partner, does it really make sense to get high numbers of disempowered disabled persons married off to other disempowered disabled persons? Doesn’t this compound the personal and social problems we should be striving to remedy?

I think ideally, couples should complement each other and social and medical policies should be geared towards encouraging this. One way to encourage this would be the payment of disability benefits to seriously disabled persons, so as to give them a chance to live decent lives and be less dependent on an able-bodied person in position to make decisions for them that could be more detrimental. Such support in itself will attract able bodied persons to them, not necessarily because they have money, but because that money affords them the opportunity to date and socialize on the same planes with the able-bodied. The Altine case is a clear example of how deprivation can make such life choices as marriage and raising a family a worse experience for a disabled person. I mean, Altine’s two children have polio and her co-wife’s two children have polio, creating a vicious cycle of undignified disability with huge social consequences. Doesn’t this just tear your heart apart? What would be the consequences for society in the long run if we don’t step in now and do something? Empowerment is the key and government must play its role and encourage the rest of society to do the same.

4) Maternal conditions of disabled mothers: One of my readers pointedly asked how Altine could carry pregnancies in that condition. I must be sincere, I cried later in my hotel room imagining Altine crawling about with a pregnancy. How can a society stand by and watch such a situation and do nothing? Where is our humanity? Again, this is where targeted social policies work. If we value life and the dignity of every person, we must provide special antenatal and postnatal facilities to cater for those women in Altine’s position. We must increase the chances of the unborn not turning out like their unfortunate parents.

5) Unsanitary environment: Personally, I don’t know how people cope in unsanitary conditions. I can’t eat, sleep or function in unsanitary environments, because the major thing that affects my productivity is the cleanliness or otherwise of my environment. But while some may consider me a cleanliness freak, I do believe there are minimum sanitary conditions necessary for healthy development of all, including disabled persons. While there are personal responsibilities for hygiene with everyone, disabled or not, disability does limit the person affected in several ways. For instance, disability could make it impossible to stand/squat over toilet seats or take a bath in an unhygienic place. Can you imagine crawling on your hands and feet to use the bathroom in a public place where people inconsiderately pee on the floor, splash water everywhere, spit, etc? I think it’s critical that building and tenement policies are put in place to require public and private buildings (especially those for rent) make constructional provisions in for the disabled.

6) Social stigmatization and discrimination within the disabled community: One of my friends, OJ was quite indignant at the fact that on the last day of our Convention, there was crowd control and the disabled locals couldn’t attend. He pointed out that that in itself was discriminatory. To be honest I hadn’t thought of it from that angle, as I have always looked at it from the larger societal discrimination and stigmatization of the disabled person. This made me conclude that discrimination on the general level would seem to have affected how some of us also see ourselves. Of course, the argument can be made that not everyone can attend all events, especially the ones requiring some level of literacy. I mean, not all able-bodied persons attend or are allowed to attend any event just because they are able-bodied. However, the crucial difference here is that if we are trying to spread a message on the mass level, how we treat our own matters greatly and could indeed be a signal of how others treat us, especially in a society where there is near-institutional discrimination against disable persons. For organizers of events for disabled persons, my advice would be that while it is impossible to get everyone to attend or be part, because of the obvious impossibilities, the key issue would be to ensure that less literate PWDs or more severely disabled persons not able to participate are not left out of whatever benefits that may accrue from such events and our activism. It would be a great signal to the rest of society as well that the way we treat our own is the way we want them to treat all of us. We the disabled need to know that no one will be prepared to change their attitude about us if we, the enlightened members of the disabled community, do not work hard enough to show that we are one. So, yeah, this Point No (6) is directly speaking to disabled people themselves!

7) Parental responsibility and socio-cultural discrimination and stigmatization within the larger society: The final issue I want to highlight is parental responsibility and here I will also touch on the socio-cultural stigmatization and discrimination within the larger society. This twin problem actually emblematizes the notion of “The Forgotten Ones” better than the others, because it touches and challenges the core of our humanity right up to our homes and our national institutions. It is not a secret that a large number of parents (especially the less enlightened ones) treat their disabled children like they’re cursed and therefore condemning them to begging or a less than human existence. I suffered polio at the age of three, but my parents never kept me hidden or separate (as I see some parents do). I was kept among other children, sent to the same schools as others and treated with love and affection like all others, so those others didn’t see me as ‘different’, because my parents never treated me any different from them. Obviously I was teased and taunted on occasions, as is expected with kids who don’t know better, but not only did that make me stronger by making me develop extraordinary courage to stand up to bullies, I was helped all the way by my able-bodied siblings who didn’t see me differently. It is difficult enough facing prejudice, stigmatization and discrimination outside, but to have it amongst those who should first show you love is the next thing to death! Thus, less enlightened parents need to be specially sensitized on the fact that ‘disability is not a curse and that a disabled child will not grow into a burden if he/she is treated normally and given all opportunities needed to live a productive life.

However, for this to work, state-sponsored disability education and orientation for parents and their disabled children would help, because that is also the bridge to the heart of the larger society. I say this because all over the country, there are ‘homes/institutions’ that can only be aptly described as ‘shitholes’ where PWDs are kept in less than human conditions. You will find all categories of disabilities in these homes with zero-standard facilities and care. Everything there indicates that these are places where the disabled are dumped to rot! Why, because parents and relations who do not care dump them there and social workers there have no scrupled treating them as sub-humans! In such an environment without salutary sanitary conditions, no medical care, no form of leisure or constructive engagement of the minds of its inhabitants, a PWD with only a limb issue for instance will eventually lose his mind too!

The usual excuse is that there is no funding and government officials are quick to let you know that they aren’t priorities, forgetting the huge social implications of such an attitude! The point I’m trying to make here is that bad parental attitude or bad attitude from relations of disabled persons is a microcosm of the general bad attitude of state officials and the larger society of which we are all part. Everyone must work to change this attitude, because it speaks of our heartlessness to let this go on! So, I’m proposing that a huge social mobilization drive needs to be undertaken to get parents, governments, private philanthropists and civil society groups to begin to look at means to put the condition of the disabled on the front-burner of public policy, so that we can get the required funding and support to run these places like good homes, train personnel and influence a change in personal and general attitudes towards the disabled.

I know some of you will accuse me of being a starry-eyed dreamer and you’ll be right to an extent. However, the extent to which you’re wrong is what concerns me. I know a lot of work needs to be done on this issue, but we just have to start from somewhere. All I’m doing here is trying to generate discussions that will lead us to begin that process. Rome was not built in a day, I know! The health of any society is only as good as the health of its most vulnerable members!

Dear friends, I welcome your thoughts on how we can proceed in addressing the above issues, because all I have done is highlight them.

NOTE:

This is to acknowledge some of the amazing responses I’ve been getting from readers on the Altine story, both from Facebook and here on the blog. It’s been such an incredible outpouring of love, compassion and commitment that I cannot thank you enough. Indeed, some of my Facebook friends are already talking about raising money, clothes, foodstuff, drugs, etc to send to Altine and her women! Some are also seriously organizing and discussing advocacy moves on a national and regional level, including reaching out to Northern governors and women leaders in the region with a view to putting these issues in the forefront of public policy. I cannot predict how it will all go, but this is a wonderful start, if only for the fact that more of us are getting sensitized and informed on these issues. Women like Altine need some form of economic empowerment. Having to make a choice between having a wheelchair and food is just not right. A wheelchair is not a luxury it should be a necessity. If we can make any sort of headway in opening opportunities for economic empowerment and dealing with the sexual and reproductive health issues, that will be a huge start. We are blessed, but “The Forgotten Ones” need a little blessing from us as well. Are we really ready to show the face of our true humanity? We live in hope!

Duchess...

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..