WASHINGTON GROUP OF QUESTIONS

If elephants count, people living with disability must count, too

The 2009 census left out other groups of PWDs, leading to a challenge of identification

In Summary

• Many people find it difficult in identifying with the label ‘disability’ due to the stigma associated with it.

• Since it is impracticable to have a team medical doctors or specialist to conduct the census, the registration process of the NCPWD requires that one must be assessed by a board of medical personnel.

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

For a long time, persons with disabilities (PWDs) in Kenya have been clamouring to have relevant data to reflect their true numbers.

However, this hasn’t been the case. To drive the point home, it is said the government knows the total number of elephants in Kenya, but it doesn’t know how many persons there are within its borders.

The first attempt to count PWDs was in 1999. However, the question wasn’t well framed and the data obtained wasn’t useful because of the medical approach that the statisticians used. It is also true that by this time, there was inadequate conceptualisation and understanding of disability as is currently the case.

 

Consequently, as a special national survey for persons with disabilities was conducted in the year 2007, primarily to ensure some baseline was established from the purposes of the 2009 census.

The survey found out that 79 per cent of PWDs were living in rural areas and that the general prevalence rate of disability was at 4.6 per cent. Most respondents from the 14,563 households that participated indicated attitude displayed by people around them caused a bigger problem than the medical condition, and that they are treated differently in relation to their disabilities.

A variation occurred during the 2009 census, in that the percentage of PWDs reduced to 3.5 per cent totaling to 1.3 million. The question that Kenyans were asked then was whether they had a disability, and if yes, what type specifically — visual, hearing, mental physical speech self-care or any ‘other’.

Visual impairment was the most prevalent, following physical and hearing disabilities. However, these numbers didn’t tell the whole story. WHO estimates that 10 per cent of any population has some disability or another, hence the total figure should have been closer to 3.8 million Kenyans.

Many people find it difficult in identifying with the label ‘disability’ due to the stigma associated with it. A case in point is when we were piloting the new disability registration policy of the National Council for Persons with disabilities (NCPWD) in Kajiado and Githunguri in 2006.

Visiting a Manyatta in one of the homesteads of a Maasai family in Ilbisil area, I found a 90-year-old disabled World War II veteran. He had a wife and a small girl who was deaf. When I asked the wife if the husband was disabled, she said no, and that he only got war injuries. She further said her deaf daughter wasn’t disabled, only that she couldn’t hear.

The 2009 census left out other groups of PWDs, leading to a challenge of identification, eg the category of ‘self-care’ was meant to capture those with developmental disabilities such as autism, cerebral palsy, and down syndrome. It didn’t.

 

WHAT IS DISABILITY?

It is , therefore, good to understand the difference between impairment and disability.

“Impairment is any form of bodily loss of function, and can be as a result of injury, illness or congenital condition.”

Disability, on the other hand, is ‘a social construct that results from the interaction between persons with various forms of impairments on one hand and barriers majorly environmental or attitudinal’.

Environmental barriers are two — the natural environment, and the built environment. While the natural terrain is difficult to navigate, especially for those with visual or physical impairments, the built environment is largely a construction of designers who don’t envisage PWDs to utilise such spaces.

The social model of disability seeks to lay emphasis on the “difficulties” that one experiences on a daily basis due to the impairments and not the impairment itself that can’t be fixed.

Since it is impracticable to have a team medical doctors or specialist to conduct the census, the registration process of the NCPWD requires that one must be assessed by a board of medical personnel. After 13 years conducting this exercise, only a paltry 500,000 PWD’s have been registered.

The Washington Group of Questions (WGQs) seek to overcome these barriers by first, removing the stigma associated with the disability label, second, simplify the focus to the areas of difficulty encountered on a daily basis.

Third, they remove the pushbacks associated with the traditional view of disability as championed by mainstream Disabled Persons Organizations.

WGQs are a response to the inadequacy of disability data due to the hitherto predominant medical model. They are more of a consensus of statisticians that also espouses the need by disability advocates for the attainment of the right figures. This will, therefore, lead to a higher percentage of occurrences of disability than previously documented.

There is, therefore, the possibility of having disability prevalence/continuum of up to 40 per cent of the population. However, only a certain threshold would qualify as a good estimate.

This data needs to be further disaggregated and analysed to examine the true status of PWD’s in Kenya in terms of education, health, economic activities and income mobility.

If the elephants count, PWD’s must count too.

The writer is Senator representing PWD’s in the senate and the first MP and Senator with Albinism

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@mwauraIsaac1