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Deafblindness shows rights activism must be tempered with realism

October 23, 2013 - 1:05pm -- Nick Young

I offered this piece to The East African in early 2012. I wasn’t surprised that they turned it down. No-one likes to hear that equal rights have a price tag.

It was recently my privilege to do some consultancy work for SENSE International. This UK-based NGO is working in Kenya, Tanzania and Uganda with children and young people who are both deaf and blind.

There is real moral grandeur in this effort, for deafblindness is among the most disabling forms of disability. Probably affecting at least 40,000 people across East Africa, its causes are varied, including rubella (‘German measles’) contracted by women in early pregnancy, several genetic disorders, seriously complicated births and meningitis or malaria in new born infants. These complex causes mean that deafblind children usually have additional complications such as cerebral palsy, epilepsy, or serious heart problems.

SENSE has shown that, despite this daunting level of impairment, quite modest investment can ‘make a difference’ for affected families. In poor households, deafblind children often spend all day on a mat in the corner, with wasting muscles that leave them wretched and helpless, soiling themselves, enduring lives of unimaginable isolation and narrowness, and barely accepted as human beings. But if suitably trained community volunteers make regular home visits, families can learn how to interact and engage with deafblind kin, enabling them to walk, find their way around their home environment, communicate with the family through ‘tactile sign language’, clean, dress and feed themselves, help with household chores, and lead lives that are happy and loved.

Yet this requires time and effort which some parents are unwilling or unable to make.

As I spoke to community workers and parents in the three countries, I kept hearing the same refrain. “Because of African culture,” people said, “parents believe deafblindness is caused by witchcraft or curses. And Africans expect their children to be an asset, but deafblindness is a burden.” Ashamed, frightened and even resentful, parents hide and neglect deafblind children, believing nothing can be done.

But there is nothing uniquely African in these attitudes. Almost identical ideas prevail across the world’s poor countries, just as they once prevailed in countries that are now richer but still struggling with discriminatory barriers.

What brings attitudinal change? Education and ‘sensitisation,’ some say. Well, maybe: but this must be combined with showing how the potential of deafblind children can be unlocked. And that takes money.

In Europe and the USA, charitable services for deafblind children began to develop from the mid-19th century. In 1964-65 a rubella epidemic in the USA caused a spike in the number of deafblind births. Family demand for services grew, along with awareness of deafblindness among policymakers.

Rubella immunisation began and, in response to more generalised demand for civil rights and equal opportunities, the 1975 Education for All Handicapped Children Act articulated the principle that if the state provides free education for some of their children, it should provide it for all.

By 2000, more than 10,000 deafblind Americans were enrolled in full-time education, showing that, given the chance, deafblind people are capable of much more than brushing their own teeth and helping mum shell the beans. (Jerome D. Schein, Enid G. Wolf-Schein, A Brief History of Services for Deafblind People in the United States, 2000)

Across East Africa, by contrast, only a few dozen deafblind children are today enrolled in a handful of poorly-funded special education units, attached to schools for the deaf or blind and mainly financed by international organisations. East Africans remain doubly disadvantaged. Weak public health systems expose families to higher risk of serious disability, and appropriate services barely exist.

This begs the—for many liberals, heretical—question: can developing countries really afford human rights “for all”?

‘Inclusive education’ for children with disabilities is now the dominant policy in East Africa, where states have signed up to international conventions that enshrine the rights to education “for all.” These are good developments.

But ‘inclusion’ in mainstream schools is in fact limited, confined to relatively few children with relatively modest impairments. And it will be a long time before East Africa states can afford the kind of intensive, special education that deafblind children need—requiring a ratio of one teacher per student—to make the breakthrough into Braille and the possibility of realising the recently proclaimed ‘human right’ to Internet access.

So what can be done meanwhile? Clamour for government and society to respect the rights of deafblind children? Yes, by all means. But that needs to be done in tandem with the slow and hard work of showing how to start putting rights into affordable action.

Rubella vaccination, although it too comes with price-tag, is also an obvious preventive measure, along with strengthening of maternal and child health services generally. Yet, lamentably, Rwanda is the only country in sub-Saharan Africa that has introduced rubella vaccination.