Summary of findings of the Uganda Disability Review Part 1 of 2

In the past 2 months I have assessed various disabilities from my starting point as a Nurse. I have learned many things about the impact of disability on people's lives in Uganda. I am developing a deeper understand of the issues that disabled people face and how they affect everyone in society. I realize that the experience of disability is a social and cultural phenomenon that permeates all levels of society. Attitudes about disability are often fed by ignorance and superstition. In many cases these attitudes are more damaging and disabling than the disability itself.

In 28 blogs I looked at major forms of disability following the format of: Introducing the disability, followed by a general discussion about the disability in Uganda followed by personal experiences of that disability. The disabilities I considered cover a full spectrum from mental disability to physical disability, from mental health to intellectual handicap, from accidents to diseases, from childhood to old age. I believe these blogs uncovered  many of the major issues that affect people with disabilities (PWDs) in Uganda. These were the 28 blogs:

1. Cerebral Palsy in Uganda
2. Spina Bifida in Uganda
3. Mental Health: Post Traumatic Stress Disorder
4. Little People in Uganda
5. Amputees in Uganda
6. HIV/AIDS and Disability in Uganda
7. Dementia in Uganda
8. Sickle Cell Disease in Uganda
9. Asthma in Uganda
10. Spinal Cord Injury in Uganda
11. Mental Health: Depression in Uganda
12. Down's Syndrome in Uganda
13. Stroke in Uganda
14. Hearing Loss in Uganda
15. Visual Impairment in Uganda
16. Deafblindness Uganda
17. Mental Health: Bipolar Disorder Uganda
18. Obesity in Uganda
19. Malnutrition in Uganda
20. Polio in Uganda
21. Albinism in Uganda
22. Mental Health: Schizophrenia in Uganda
23. Autism Spectrum Disorder in Uganda
24. Epilepsy Uganda
25. Cleft lip and cleft palate in Uganda
26. Multiple Sclerosis (MS) in Uganda
27. Parkinson's Disease in Uganda
28. Arthritis in Uganda

This survey is a good place to begin a deeper discussion of the issues PWDs face in Uganda. The following is a summary of some of the issues I uncovered in my research:

Some innovative advocacy at the local

 level in Uganda.

• Stigma and prejudice have a high impact upon PWDs. I have seen how stigma and prejudice go through all parts of society affecting some of the best educated people as well as the least educated. I was particularly surprised that doctors are often unwilling to give a diagnosis because of the stigma and prejudice attached to it (see Asthma in Uganda).
• The feelings of worthlessness that come with various diseases due to stigma and prejudice are further compounded by the stigma and prejudice of disability (see HIV/AIDS and Disability in Uganda and Sickle Cell Disease in Uganda).
• I saw how sometimes groups of people can be unintentionally excluded. When, for instance attention is focused on polio eradication rather than the people that have the disability. I found that there are no current records about the number of polio survivors living in Uganda, or indeed Africa (see Polio in Uganda).
• There is a sharp contrast between levels obesity and malnutrition in Uganda that has lead some people to suggest obesity is a form of malnutrition.
• The person affected by Malnutrition is affected throughout their lifetime.
• Again, malnutrition plays a role in disability, where for instance lack of folic acid before conception and in early pregnancy is a cause of spina bifida.
• In a society that ascribes many illnesses to witchcraft it is hardly surprising that traditional herbalists have a major role to play in the care of patients, much of their work is scientifically unproven or even dangerous (for instance performing amputations, prescribing asthma medications, helping with the care of epileptic patients). However the work of traditional healers should not be underestimated in the care of people with mental health issues for instance.
• Spinal cord injuries affect the most economically productive Ugandans between the ages of 20 and 40.
• Down's Syndrome identified the importance of correct education in combating stigma and prejudice.
• Stroke will become a major concern in the 21st century as life expectancy rises in Uganda. Barriers to cardiovascular disease recognition and treatment like low educational levels and poverty become major hindrances to risk factor modification and contributed to the overall increase in stroke incidence by 20% in Uganda, compared to high income countries.
• Albinism asked the question what is a disability? Following the social model of disability it is easy to see that PWDs are disabled by barriers. Removal of barriers is the major way to combat disability. I am shocked that albinos are hunted for their body parts which are said to confer magical powers.  
• Autism spectrum disorder, with proper education it is possible to reduce the burden of the stigma and prejudice associated with this disease.
• Epilepsy: There is a vast gap in knowledge of the correct treatment, meaning that 95% of persons with epilepsy are not getting the correct treatment.
• Cleft lip and cleft palate: Cleft lip and cleft palate can be resolved by a simple operation that with the correct family support removes the disability of stigma and prejudice for life.
• Multiple Sclerosis (MS): Racial prejudice combined with suggestions that MS is rare amongst Africans has lead to a lack of knowledge about the numbers of people with MS. It is more than likely that there are similar numbers of Africans with MS as there are in the rest of the world. It was further noted that MS is fertile ground for miracle cures because of the relapsing and remitting nature of the disease that gives the illusion of an effective cure after an attack. 
• Parkinson's Disease: As life expectancy increases so the incidence of Parkinson's disease is expected to increase to levels of that of America. 
• Arthritis: Osteoarthritis is predominantly a disease of old age, affecting more than 82% of those over 65. Almost twice as many women are affected than men. Both the elderly and women are vulnerable and more likely to live in poverty.
• Visual impairment: It is important to educate people as to the contributions PWDs make to society and the economy.
• Deafblindness is a condition that is largely preventable with vaccines.
• It is important for instance to educate traditional herbalists about conditions like Autism Spectrum Disorder that can be treated using modern methods.

The attitude to these findings is summed up by Annet Nakyeyune Tibaleka the Founder of Little People of Uganda, she says:

“Whenever you find yourself in a situation that is prone to misconception, which in most cases breeds stigma, seek to know as much as possible about that situation. It is only until you overcome ignorance, stigma, shame and denial, then can you be able to fight for the rights of others in similar situation”.

During this research I have come to understand that knowledge and understanding of disability are the key to removing barriers. Stigma and prejudice have a profound effect upon the person that encounters them. A key to helping a PWD is to work to remove the barriers the he or she faces.