Abled Differently: Rare forms of Physical Disability

“Why is it that people who have legs and can walk come late to church?” Elijah, a young man living with disability posed one Sunday morning in church. Sister Clemencia of St. Peter Catholic Church Majengo area, Narok County clearly draws her inspiration from the work she does supporting children with disability among the Maasai community from this question Elijah asked. As we gently walked to her office I noticed she was limping, before I could ask anything she told me how she acquired the disability perhaps to identify with those that she serves passionately.

Disability amongst the Maasai community is traditionally seen as a curse, she posed as I helped her fetch a file with names of the children she has rescued. Those living with disability are rarely, if ever given public exposure. They do not receive education, medical attention or get any assistive devices.

A physical disability is a physical condition that affects a person’s mobility, physical capacity, stamina, or dexterity. It could be any one of a number of physical conditions that significantly inhibits a person’s ability to undertake routine daily activities. These conditions include but are not limited to brain or spinal cord injuries, multiple sclerosis, cerebral palsy, respiratory disorders, epilepsy, hearing and or visual impairments.

The causes of a physical disability are as varied as the conditions themselves. They usually fall into one of two categories:

Hereditary/Congenital – This is where a person has been born with a physical disability or developed one due to inherited genetic problems, has suffered an injury at birth, or has issues with their muscles.

Acquired – An acquired physical disability could be due to a road traffic accident, workplace incident, via an infection or disease, or as a side effect of a medical condition such as a stroke or cancer. Some physical disabilities present very unique and rare kind of deformities one of them is;

Muscular Dystrophy

This kind of disability is not very common and it refers to progressive loss of muscle strength due to a group of hereditary disorders. Muscles around the neck, shoulders and hips are usually more affected than the other muscle groups. Muscles of the respiratory system are also affected at a later stage. With time the affected person’s functional and mobility status deteriorates and may require a wheelchair for mobility.

Such is the kind of disability which Reuben Lengume a first born in a family of five and currently under Sister Clemencia guardianship, has battled since birth. After his demise at birth he was denied by his father and ended up being brought up by the mother only. Lengume is now a student in a boarding primary school leaves a happy life and tops in his class. Sister Clemencia and her team have supported the boy through the help of Cheshire Disability Services Kenya organization (CDSK), which funds programs to support children with disability.

Treatment

Improvement of the disabling condition depends on the cause, type, extend of the disease, disorder or injury. However, in most cases the physical improvement is seen only in the initial few years of disability. There are few conditions that are progressive type and the treatment goal is to maintain their condition. Rehabilitation programmes are planned to help individuals to overcome initial unstable conditions and prevent deterioration of the medical condition. The person should also be more conscious with his diet to avoid further deterioration of his medical condition and recurrent of diseases. More importantly, people with disabilities will learn, through rehabilitation programme, to manage their disabilities confidently. Some of the programmes include:

Occupational Therapy  is a specialised treatment programme that prepares the clients to live successfully in his/her own family and society. Through the practice and training of purposeful and goal directed activities and exercises, this treatment programme tries to improve client’s functional abilities and independent living skills.

Physiotherapy is a rehabilitative treatment programme, through the use of physical means such as exercises and electrotherapy that are planned and customised according to the individual client’s need. Examples of the treatment are maintaining and improving the power of the target muscle group, preventing occurrence and progression of contractures and deformities.