Lutgard Musiime

Advocacy week; Day 5

We are already in the 2nd week of the writing magic here at #WinterABC2021 and this is a special one where we look at advocacy. We get to talk about things we wish the world could pause and reflect on to bring change and make the world a better place.

I chose to camp at the street of persons living with disabilities for this week because we are now living in times where the empathetic battery is constantly beeping to be recharged. Gone are the times when we lived as a whole, being our brother’s keeper and looking out for each other. Lately it seems to be about oneself and their immediate people. Truth is times are hard for everyone but it gets even tougher for someone who has to work twice as hard to accomplish the same task as someone else. To give you an example for context, look at an autistic child who struggles with communication having to express themselves among people who do not necessarily struggle with communication. Chances of these people being patient enough to wait for this child may be quite low.

There are about one billion people around the world with some form of disability, and 80% of this population lives in developing countries. In Uganda alone, it is estimated that 12% of the population has a disability. This is presently approximate to 4.5 million people. The proportion of children aged five years and under who had a disability in Uganda, according to a report on Persons with Disability published in 2019 titled “BRIDGING THE GAP THROUGH STATISTICS”, was 1.6 percent and 1.8 percent for females and males, respectively. In Uganda and the world over, disability is both a cause and consequence of poverty and people often face significant barriers that prevent them from participating fully in society; including getting quality education and employment. People with disabilities are likely to face more risks and vulnerabilities along their life cycle, and face barriers resulting in limited participation, such as accessing public transport, getting adequate healthcare and employment.

But do we ever think about the challenges that these persons face on a daily not forgetting the parents and guardians of these children? Disability in childhood can have a lifelong impact on a child’s physical, mental and emotional health, and their social situation when they become adults.

No parent dreams of walking into a hospital and coming out with a child who is anything less than healthy. When a child is born with a disability, it becomes a blame game between the parents, if not the two extended families. I am Ugandan; and from my background, it is common practice and norm to have a healthier child and base it on good patriarchal genes. Should the child be anything less than a healthy child, it is usually the mother to be blamed. Some people will assume that the mother must have done something wrong; perhaps sinned gravely or irked ancestral spirits. Often, her in-laws or the father of the child will ridicule her for giving birth to a child with a disability. Sometimes, they will throw her out of her marital home or abandon both her and the child. Sometimes some paternal relations may refuse to name the child, hoping that it would die and take along with it the family shame. Sometimes, these differently abled children are abandoned at their grandparents’, to keep them out of the public eye, so as to maintain a good and healthy image in society.

But in all this the biggest person at risk here is the person or child living with this disability, so let us look at the different challenges these people face with the hope that we can brain storm on how to make it better once the challenges faced are explored.

1. Lack of effective participation

There is limited involvement or no involvement of children living with disabilities, their parents or guardians in formulation, dissemination and implementation of the laws and policies that relate to them which leaves me thinking that there is alot of assumptions that are done on their behalf thus leaving a big void between what they could be facing and what they need.

This has, as a result, led to ignorance and ineffective implementation of the existing laws and policies for these children and their parents or guardians could enforce to cause inclusiveness.

• Community misconceptions and stigma 

Community misconceptions and stigma remain associated with children living with disabilities and their homes. This leads to attitudes and behaviours of neglect, isolation, abuse and marginalisation of these children by communities and families leading to increased discrimination. These children are despised by even their peers in the societies they live in. Some parents have had and continue to have negative attitudes towards such children. It is not news that parents often hide their child(ren) living with a disability and deny them their rights to associate and socialise, thinking that they are totally helpless. Unfortunately, even communities view these children as objects of charity worthy of no existence.

• Inferiority complex

Because of their difficulty in socialising well with other children or people and because of their unique abilities, children living with disabilities always underestimate themselves in character and in their expression of those characters. They often think and believe that they do not fit in society, just like how other able-bodied children do. During infancy, you will often hear children asking their parents why they are not like their friends, especially when they reach an age where they can reason. This manifests in their self-pity, loss of self-esteem and failing to report human rights violations committed against them. The situation is worsened by service providers and the public who do not appreciate that to accord these children their rights is an obligation. Children living with disabilities, therefore, grow up with misery and lack social networking skills.

• Hunger

It is a painful reality what children living with disabilities go through in their day-to-day lives. Inadequate nutrition at a young age prevents these children from developing properly both physically and cognitively. We also continue to see how poverty is almost inseparable from disability given that parents of these children spend a lot of their financial savings and resources trying to make these children as ‘normal’ as they believe they should have been born. Often, some lack money as a social background and cannot feed these children on balanced diets which can enable them to grow fast and strong despite their unique abilities.  

• Lack of community mobilisation and advocacy

This is largely because of weak institutional frameworks because of lack of coordination between Government institutions and civil society organisations of persons living with disabilities. And unfortunately, it is the children and persons who miss out on protection and who have to manoeuvre on their own or with family to ease their lifestyles. So children and persons living with disabilities need advocates for their rights, inclusion and help which is the reason I decided to make camp here for this week.

How do you think we can make this narrative different? Please share in the comment section.