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...