The Bill for the Establishment of National Agency for Albinism and Hypo-Pigmentation
This article by Ayokunle Adetula, discusses the discrimination faced by people that have albinism, that is, "a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes". He also points out some flaws in th
The Albinism Bill
The core responsibility of federal legislators is lawmaking. Federal legislators also sponsor motions among other responsibilities, that impact on the direction of State polices. The resultant effect is that, whatever is done in the hallowed chambers of the National Assembly is expected to have either a direct or indirect positive impact on the lives of Nigerians. This probably explains the reaction of Senators to the decision to withhold assent to some bills sent to the Presidency for assent. To however, forestall occurrences of the Presidency not assenting to bills, there is a need to ensure that bills take into consideration in their totality the interests and concerns of the citizenry and State policies. Of particular importance is a bill at the National Assembly - An Act to provide for the Establishment of National Agency for Albinism and Hypo- pigmentation (NAAH) and for related matters (‘the Albinism Bill’) which was sponsored by Honourable Linus Okorie. The Albinism Bill was referred to the Senate Committee after it passed second reading on January 19, 2017.
What is Albinism?
My critique of the Albinism Bill is not only as a concerned Nigerian, but also as an albino who is from a family of albinos, supposed beneficiaries of the Albinism Bill when it becomes an Act. I am obviously proud of this novel legislative initiative by Hon. Linus Okorie. From savouring the advantages of easy recognition in the crowd, having my voice heard without stress, to losing a very close relative to an albinism related ailment, I can speak of the benefits and challenges that come with albinism. Needless to say that albinism is the absence of melanin, a medical condition that affects the skin and vision of albinos.
Discrimination
It is commonplace to hear innuendos and discriminatory remarks being passed at albinos on the streets and elsewhere. The sight of amazed children singing in admiration and/or derision of albinos, are not new in our societies. It is a situation that albinos in this part of the world possibly have learnt to, or are struggling to live with, notwithstanding its effects. Interestingly, a lot of albinos have grown to either shrug it off or protest such unfavourable remarks. From experience, most times, protests do not work against children. However, the situation is not the same, when adults pass snide remarks on the basis of albinism, or even openly discriminate against albinos. This makes the Albinism Bill and its intended effects in its present form, a very topical one.
My experiences and several other albinos whom I have interacted with, have so far shown clearly that acts of disdain and/or discrimination against albinos and albinism are usually deep seated, even among educated elites. It is a discriminatory practice that is pervasive.
Flaws of the Albinism Bill
One of the great challenges of albinos is the rude jokes. This deeply affects the self-esteem of albinos and is seen as a major limiting factor to how far albinos, the subject of such rude jokes, can rise above societal derision. My interaction with other albinos, has further reinforced the fact that a lot of people who are ordinarily expected to have outgrown discriminatory practices against albinos, either as a result of their education or exposure, actually have not. They have only suppressed the discriminatory tendencies, which tendencies easily turn to actions, at the slightest and/or possible contact with albinos. These set of people usually pose a great challenge to albinos, as such discriminatory tendencies usually deal huge blows to albinos. Hence, the Albinism Bill’s failure to address this, is a major flaw of the Bill.
The Albinism Bill also failed to make specific provision for at least an albino, to be on the Board of the National Agency provided for under the Act. The possibility of selecting or appointing Board members with suppressed discriminatory tendencies against albinos, is extremely high. I dare say the statutory inclusion of an albino on the Board of the National Agency at all times, will better ensure that the Agency is on course to fulfilling its mandate. Also, the Albinism Bill is silent on the employment of albinos to the Agency. The exclusion of albinos from the Board and the non-prescription by the Bill for albinos to occupy sensitive positions where policies will be made to drive the efficacy of the Bill, is akin to the Berlin Conference of 1884, where the fate of Africans were decided without their input. This singular lacuna can be easily exploited to frustrate the intendment of the Albinism Bill. Seeing that albinism is a medical condition which largely affects the vision and skin, it is also surprising that the Bill does not require persons with knowledge of ophthalmology and dermatology to be on the Board, aside from liaising with medical institutions. In essence, individuals without genuine desire or those with political connections, can explore the absence of such provisions in the Albinism Bill to sit on the Board of the National Agency, thereby receiving salaries and allowances without any providing meaningful impact as required.
Furthermore, the Albinism Bill, seeks to empower the Board to regulate the Albino Foundation which is a private organisation. The enactment of laws to establish national agencies to regulate the activities and programmes of a singular private organisation, is alien to our laws. The Bill also fails to give credence to other organisations that may be formed in the nearest future, with the aim of furthering the interests and welfare of albinos. The singling out of Albino Foundation by the Albinism Bill, is either a pointer to the fact that the Albinism Bill was sponsored to give Albino Foundation a special status, or inhibit the activities of the foundation, depending on who is in charge of the mantle of leadership in the Agency. The Bill unnecessarily seeks to subsume the Albino Foundation under its wings. This provision in the Bill therefore, has the potential to be interpreted unjustly to the detriment of albinos and the Albino Foundation. It is also my considered opinion, that such provision in the Albinism Bill is likely to flout the constitutionally guaranteed freedom of association.
Conclusion
Notwithstanding the supposed good motives that may be behind the Albinism Bill, it is crystal clear that it cannot achieve the desired effect, and needs to be reworked to allow albinos also play a leading role in rewriting their stories and uplifting their welfare and standard of living. Being an albino is already challenging enough in view of the visual and skin-care difficulties. Living as an albino in the Nigerian society where one is exposed to a constant barrage of derisory and negative attention, is largely destructive. There must therefore, be a deliberate effort in the Albinism Bill, to prevent and possibly sanction, individuals that are found instigating such derisory and negative attention. Furthermore, albinos should be given a prominent position in the driver seat, to champion that change they desire to see in the society. The Albinism Bill must be an ambitious law, that will provide a well rounded approach to tackling headlong, the challenges faced by albinos. The Albinism Bill in its present form before the National Assembly, is silent on these important issues, and a careful perusal will clearly show that it will end up like several of our laws that are open to mischievous interpretation, if it is not redrafted.