Richard Kramer, CEO, Sense International
This year marked the 15th anniversary of the UN Convention on the Rights of Persons with Disabilities, a crucial global human rights framework aimed at ensuring equality and protecting the rights of people with disabilities worldwide.
As CEO of Sense International and Sense in the UK, we’re committed to leaving no one behind. Despite health crises, economic instability, and political turmoil, we’re determined to break down social barriers that exclude people with disabilities. Collaboration, shared learning, and global advocacy are now more crucial than ever. It is precisely for this reason that partnerships, such as the one currently supported by The Caretech Foundation, hold significant importance.
Sense International celebrates collaboration. We are a global charity supporting people with deafblindness to have an equal and active life across eight countries. For 30 years we have ensured people with deafblindness can access education, health care and the means to earn a living, so they can live life to their full potential.
People with deafblindness have a combination of a sight and a hearing impairment. Imagine how this affects a child’s everyday life – since one sense cannot compensate for the other, communicating with others, accessing information and moving around independently is much more difficult.
Misunderstanding of deafblindness globally leads to stigma and discrimination, isolating individuals and hindering their engagement in the community, impacting their future prospects. Shaban’s story below illustrates these challenges. However, through awareness, advocacy, support, and adaptations, children with deafblindness can thrive and become equal, active members of society.
The Second Global Report on Deafblindness (World Federation of the Deafblind, 2023) reveals that approximately 2% of the global population, or approximately 160 million people, are affected by deafblindness. Individuals with deafblindness constitute one of the most marginalized and neglected demographic groups. This condition is particularly prevalent among children in regions with subpar maternal and child healthcare, heightened incidences of diseases like malaria, meningitis, and rubella – leading causes of deafblindness.
Our approach to deafblindness encompasses the entire life cycle, from early identification and intervention for infants and young children to inclusive education, vocational training, and livelihood support. We collaborate with governments, local organizations, and deafblind individuals to establish sustainable infrastructures that allow each country to independently continue this crucial work. Our partnerships with hospitals enable early identification, with over 60,000 children screened for hearing and sight impairment last year.
Moreover, we emphasize a two-step process, ensuring specialist intervention services and training for therapists to facilitate communication, independence, and daily tasks for affected children. Equally significant is our work with parents and caregivers, empowering them to better support their child’s development at home.
This work wouldn’t be possible without the generosity of partners such as the CareTech Foundation with whom we are working to provide sight and hearing screening for 86,000 children in Tanzania to identify and support those with deafblindness. As part of this 3-year programme, 48 health care workers will be trained on how to conduct sensory screening in 24 primary health care facilities. Once a child is identified as having a sight and hearing problem, the child will be referred to Sense International’s early intervention services where they will receive dedicated support. Getting the right support as early as possible is essential for the early childhood development of children with deafblindness. Only by building the systems, support and advocacy can we ensure that no child is left behind. Together we must reach higher. Together we can transform more lives. As we approach our 30th anniversary as a charity, we must do more with the help of others.
Shaban’s journey began under challenging circumstances. Born prematurely at just 28 weeks and weighing a mere 1.5kg, he faced a steep uphill battle from the start. His mother, Ester, noticed that Shaban wasn’t achieving key developmental milestones like walking and talking. However, obtaining a proper diagnosis for her son proved to be an arduous and frustrating process.
Compounding their difficulties, Ester felt increasingly isolated from her local community due to Shaban’s disability. The sense of being shut out and the mounting despair over her son’s prospects left her feeling adrift. It seemed that Shaban might never achieve the same milestones as other children, and Ester’s hope began to wane.
However, a turning point arrived when Shaban was referred to their local hospital. Sense International’s program stepped in, conducting comprehensive tests of Shaban’s sight and hearing using professional equipment and trained healthcare workers. It was then that Shaban received a definitive diagnosis of deafblindness and was subsequently referred for early intervention therapy.
For the past eight months, Shaban has been meeting with a specialized occupational therapist on a weekly basis. Through the use of toys, equipment, and physiotherapy, this therapist has been instrumental in helping Shaban develop his muscles and communication skills. Simple tasks like grasping toys have become more manageable for Shaban, and he’s gradually gaining more independence in his daily activities, such as brushing his teeth, feeding himself, or holding a pen.
Shaban has also learned to use a communication board, which enables him to express his needs and access information. This board employs objects of reference to symbolize various activities, helping Shaban navigate his daily routine. His progress has not only transformed his life but also rekindled Ester’s hope. She remarked, “It was so good that I met other women with children like mine. This gave me strength and encouraged me to know how to support my child.”
At Sense International, we firmly believe that every child with deafblindness deserves to experience the fullness of life. Through our partnership with the Caretech Foundation and dedicated efforts, we aspire to turn this belief into a tangible reality for children like Shaban.
www.senseinternational.org.uk
