INCLUSIVITY

Albinism numbers matter in planning

This was a great milestone since for the first time, we were counted.

In Summary

• Persons with albinism must count in decision-making.

• Majority of PWAs who have either ocular or Rufus albinism, are not aware or do not identify as having albinism.

Abdhulhafidh Nassor with his mother Dor- bib Nassor register with Malalo Mwakazo in Mvita.
COUNT Abdhulhafidh Nassor with his mother Dor- bib Nassor register with Malalo Mwakazo in Mvita.
Image: Charles Mghenyi

Kenyans this weekend concluded the traditional 10-year census cycle last held in 2009. For members of the Albinism Society of Kenya, this was a great milestone since for the first time we were counted to get a realistic estimate of how many we are.

The census will help in ascertaining amongst others, the genetic variability and occurrence of albinism within our population. The clamour for our inclusion into the mainstream society has not been easy. The campaign officially started through a petition to Parliament on August 6, 2009, by Eugene Wamalwa, then Saboti MP, and signed by more than 300 members of the society.

On August 31, 2010, Planning and Vision 2030 minister Wycliffe Oparanya invited ASK members to his office for discussions with director general of the Kenya National Bureau of Statistics Anthony Kilele and later on for the launch of the results at KICC.

 

Oparanya noted that the 2009 census failed to capture persons with albinism data because the census technical working group on disability did not recommend a special code on albinism. He said the request by the society had come late, when materials had already been printed. The ministry committed to looking into it with ASK. The minister suggested a special census for PWAs through the provincial administration.

The Ministry of Social Services and the National Council for Persons with Disabilities were to ensure the Persons with Disabilities Act was amended to mainstream PWAs. On sunscreen and sunglasses, the minister committed to work with Uhuru Kenyatta, then Deputy Prime Minister and Minister for Finance, to ensure a tax waiver in three months.

Albinism has two major categories — ocular, which is characterised by lack of pigmentation in the eyes only, and oculocutaneous, which is lack of pigmentation in the eye, skin and hair. The second category has a subtype also known as Rufus albinism. It is characterised by reddish-brown hair and yellow/bronze skin.

On representation, the minister advised that in view of the new Constitution, political parties could nominate one of the PWAs to be among the 12 slots for special interest groups in the National Assembly, or amongst the two for PWDS in the Senate. He advised ASK to lobby parties to ensure this happens.

Consequently, the Social Services minister in conjunction with NCPWD attempted a national headcount through the provisional administration in 2013. However, this was not successful due to the manner in which it was conducted.

In 2006, as a board member of the NCPWD, I managed to make albinism a stand-alone type of disability within the organisation’s registration policy and application form.

NCPWD had been given the mandate of registering all PWDs in Kenya under the Act. It was not easy to convince my fellow board members we be removed from the category of visual impairment.

In fact, the terminology that found its way to the form is ‘albino’ but it served the purpose nevertheless.

Albinism has two major categories — ocular, which is characterised by lack of pigmentation in the eyes only, and oculocutaneous, which is lack of pigmentation in the eye, skin and hair.

The second category has a subtype also known as Rufus albinism. It is characterised by reddish-brown hair and yellow/bronze skin.

The majority of PWAs who have either ocular or Rufus albinism, are not aware or do not identify as having albinism. The terms “persons with albinism”, albino person, or ulemavu wa ngozi, mtu mwenye albinism, are acceptable to many persons.

Persons with albinism must count in decision-making.

Nominated Senator and chairman of the Albinism Society of Kenya