A story of failed hope
Lesedi* is a 7 year old little girl with a severe degree of physical disability who has been admitted in a permanent residential facility in South Africa. While she cannot walk, talk or sit, her mind is well developed and she is keen to learn and participate in her environment as much as possible.The degree of Lesedi's disability means that she requires a very specialized wheelchair and highly skilled rehabilitation personnel to support her learning, care and development. She also requires certain circumstances in her natural environment, like her caregivers and teachers being able to understand and support her needs through the day, among very challenging circumstances.These needs may not be able to be met by the organisation, a non-profit which is itself struggling for sustainability in tough economic times.
One day, Lesedi arrived back at the facility following a home visit with an expensive specialized wheelchair, that had been donated by a family acquaintance after seeing their plight. While the donor was well-intentioned, she did not fully understand the scope of Lesedi's needs and how best to utilize the funds spent. The wheelchair was not well-prescribed for Lesedi's needs, she needed higher level clinical support and the company who had provided the wheelchair, had done so with very little consultation with those who were caring for her. There was also a huge risk of it being discarded quickly as the staff were unfamiliar with the design and had difficulty operating it.
This is a scenario that plays out often between people with disabilities and those who attempt to meet their needs, and one of the reasons for this is that they happen rarely through engagement with professionals and others who work to understand them, especially if they cannot express them themselves. Wheelchairs, for example, always need to be prescribed in correct size, design and type for a person and be well suited to their physical environment. Ongoing therapy support, evaluation and maintenance are seldom provided for, and these are the elements that would make the investment worthwhile in the long run and actually ensure correct daily use. Aside from the harm that it can cause, the real risk of owning an inappropriate wheelchair is that it then prevents people and families from then stepping out to access the right type of equipment that can make a difference to their lives. In cases like Lesedi's, many years of critical child development will be impacted.
As a society, there are many promising factors in the sphere and while South Africa is beginning to care about disability, there is a long way to go in how we approach social development. The one thing for certain is that it cannot happen within the silos and amidst well intentioned but loose assumptions as it has in the past. More questions need to be asked with donations and a stronger bridge is needed between rehabilitation services and social initiatives, so that money invested can truly meet the needs of disabled people in the best way possible.
*Name has been changed
- Nabeela Laher is a rehabilitation professional and social innovation consultant for people with disabilities.
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