By Kabuye Ronald
People with Spinabifida and Hydrocephalus conditions under their umbrella organization of Spina bifida and Hydrocephalus Association Uganda SHAU have urged the public, government and all stakeholders to as well prioritize the invisible assistive devices.
Speaking during the African Disability Summit on Assistive technologies at UMA multipurpose hall in Kampala, organized by the different organization that unite under the African Disability Collaboration, under the theme: An inclusive Africa for children with disabilities. Ruth Nalugya, the Executive Director of SHAU urged the public, the government and the stakeholders to also prioritize the Invisible assistive devices as is with the visible assistive devices and technologies.
“Over the years a lot has been said especially about the physical and visible technologies and no attention has been given to the invisible assistive technologies to the extent that when you talk about them people disregard you. They keep wondering why you are talk about diapers because for them it’s not an assistive technology but without a diaper a person born with Spina bifida and Hydrocephalus conditions will find difficulties in socializing with the rest because they will be leaking due to lack of protective gears.
As a person representing the Spina bifida and Hydrocephalus fraternity, it is very paramount to draw the attention of the public, government and stakeholders to talk about such devices like the shunts since without it a person with hydrocephalus can’t survive. Catheters which are needed on the daily since a child needs to catheterize about five times a day and failure to do it then their kidney will be exposed to infections and they will not live beyond the age of 13.” Said Nalugya
Nalugya also called for a holistic and comprehensive approach of care which spans throughout the different stages of life. She wants the same to go along with awareness and assessment which will make them aware of the assistive device options.
“Service providers ought to understand persons with Spina bifida, Hydrocephalus and other disabilities the exact kind of assistive technologies they need without neglecting the assessment since without it you will not be helping the person but further disabling them the more.” Said Ruth Nalugya.
According to the World Health Organization, approximately 15% of the population in Africa live with sever or moderate disabilities, representing almost 215 million people.
Nalugya further called for more emphasizes on the acquisition, implementation and training, asserting that obtaining, customizing and training the users of the assistive technologies is very important. Adding that long term use and maintenance is also very important hence service providers should always endeavor to train the users especially on how to maintain, clean, adopt it, and have a social interaction with it and among others since it is consistently utilized as an assistive technology in a bid to live a productive life.
SHAU is an umbrella body of persons with spina bifida and hydrocephalus organisations in Uganda. It is committed to both improved and quality of life of people with spina bifida and hydrocephalus and their families, and reduce the incidences of neural tubes defects and hydrocephalus by primary prevention, by raising awareness and through political advocacy, research, community building and human rights education.
It is estimated that 2.5 billion people globally, or 1 in 3, currently require assistive devices. However, this need is alarmingly unmet, particularly in sub- Saharan Africa, where less than 20% of people can access the necessary products and devices. Many of these products are imported, expensive and unsuitable for the local context.
Assistive technology are considered potential life changers since they can maintain or improve an individual’s cognition, communication, hearing, mobility, self-care and vision, enhancing their health, well-being, inclusion and participation. And thus the summit aims to harness and showcase this potential by inspiring hope and progress through local solutions and innovations.
