Victory for Children with Autism as court rules in favour of Perez Mwase

The parents were overwhelmed by their child’s condition, they resorted to tying him to a tree as a way of monitoring and protecting him

Background:

In 2016 during one of the community outreaches conducted by the Center for Health Human Rights and Developed (CEHURD), the team came across a minor aged 12 years who hadn’t been growing normally since the age of 4 and whose condition hadn’t been established despite visiting several health facilities. It was later discovered that the child had a severe form of a neurodevelopmental disorder called autism spectrum disorder (ASD).

Prior to this, the parents were overwhelmed by the child’s condition, he would run to other villages and be beaten by community members who didn’t understand his condition. With no other option left to protect their child, they resorted to tieing him to a tree at home whenever they went to the garden, as a way of monitoring him. When CEHURD officials met with the mother, she informed them that she wasn’t proud about tying her son but it was the only way of restraining him from destroying property for the family and community.

Perez’ Medical Condition:

From our conversations with the child’s mother, it was established that when Perez was about four years old, he used to cry a lot in the night and fail to sleep. He was taken to Kidera Hospital where he was first diagnosed with malaria and given treatment which did not work. He was further taken to Buyende Hospital where he was diagnosed with malaria as well. He was later referred to Kamuli-Rubaga Hospital, where they failed to diagnose him and to Nalufenya Hospital for children. CEHURD contacted a medical expert Dr Catherine Abbo of Makerere University who carried out a mental state examination on Perez and developed a psychiatric report.

Filing a case in Court

In 2017 CEHURD together with Perez’ mother, Perez’ sister and Perez filed a case against Buyende District Local Government and the Attorney General in the High Court of Uganda at Jinja vide HCCS 135 of 2017 (CEHURD and Ors Vs Buyende District Local Government and Anor HCCS 135/2017). The case was based on the Government’s failure through Buyende District Local Government, to provide outreach services and early detection services to Perez hence denying him access to health services for early detection of his condition at an early stage of his life. The case also challenged the State’s failure to provide medical expertise, rehabilitation and rehabilitation centers which are easily accessible by persons with disabilities which is in violation of the right to Health, equality and freedom from discrimination.

On Tuesday 15th March 2022, CEHURD and its co-petitioners received a positive judgment in the case delivered by Justice Dr. Winifred Nabisinde who made orders that;

  • Failure of the defendants to provide medical expertise, rehabilitation and rehabilitation centers which are easily accessible by persons with disability is a violation of his right to health, right to equality and freedom from discrimination. The judgement emphasizes that it is high time the State of Uganda through the responsible duty bearers provides early detection and management services for persons with neurological disorders at the primary health care level.
  • Failure of the defendants to provide access to early detection and management services for autism to the 4th plaintiff at the primary health care level is a violation of his right to human dignity and to realize his full mental and physical potential contrary to the law.

This victory is a key step towards advancing the health rights of people with disabilities. We hope the orders and recommendations from court will be implemented.

Perez’ current condition:

Currently, the boy is aged 17 years and stays at Grace Center, an organization focusing at addressing the plight of young adults with intellectual conditions such as autism and dawn syndrome. He joined the organisation in 2020. He currently uses his hands to eat, he can sit and interact with people normally which wasn’t the case before.

The family is grateful to CEHURD for following up the case, and it is their prayer that no mother and child go through the same situation that they did.

Compiled by CEHURD’s Strategic Litigation Team (Esther Dhafa & Jane Namaganda) and the Communications Team (Grace Kenganzi & Jacqueline Twemanye).

ZERO DISCRIMINATION DAY | Together we can realise everyone’s right to live with respect and dignity

By

Decent Kamukama

On March 1st, the international community observes Zero Discrimination Day in honour and celebration of every person’s right to enjoy their rights and live a fulfilled life. In commemoration of this day, we seek to raise awareness of everyone’s right to be treated equally and with dignity with specific attention to ensuring that countries, “remove laws that harm, create laws that empower” as this year’s theme.

“Discrimination is a violation of human rights and must not go unchallenged,” United Nations Secretary-General Ban Ki-moon declared, “Everyone has the right to live with respect and dignity.” It is against this basis that discrimination against women and girls should be challenged in all ways to attain an equal world where all groups of people have equal access to services. As we commemorate the International Zero Discrimination Day, let us all be cognizant of the fact that more than 70 percent of the world’s population have been victims of discrimination in various ways on grounds of being young people, female, of different sexual orientation, persons living with HIV/AIDS, refugees, and persons with disabilities, among other people. More particularly 3.97 billion of 7.9 billion population are women, and nearly 90 percent of the world’s population of every gender holds some prejudice against women, according to a UN study published in 2020.

At Center for Health, Human Rights and Development (CEHURD), today is an opportunity to call for urgent action to end the differences related to income, gender, age overall health, profession, impairment, sexual preference, substance use, gender identification, racial group, class, ethnic group, and religion. While it is unfortunate we still need a day to remind us of this basic right, discrimination, intolerance, and inequality remain unresolved issues that lead to the unjust treatment of individuals due to their particular social identities. That is why we need laws that empower people to defend their rights. Without laws to provide guidance, societal practices and norms can be manipulated to foster discrimination.

Celebrating the right of everyone to live a full and productive life and live it with dignity is what we recognize today with an ardent focus on highlighting how women and girls can become informed and promote inclusion. You and I can unite and work together in our battle against prejudice by standing up for what is rightfully ours.

That is why it is important to ponder on the cultural practices that have been promoted over the years and yet are discriminatory. In the Elgon/Sebei region, young women and girls are at risk of forced Female Genital Mutilation/Cutting (FGM/C), which is a cultural rite of passage into adulthood. This is a risk to their health and wellbeing, and not only exposes them to negative consequences such as difficult labour, male domination and gender stereotyping but also reduced sexual expression. In looking forward to a zero-discrimination world, both state and non-state actors need to work together and ensure coordination towards the achievement of gender equality by 2030.

Stigma and discrimination of girls and women based on gender, sexual orientation and gender identity and expression (SOGIE), HIV status, or other lived realities such as trade, disability, geography greatly impact their access to SRHR information and services. Most interventions are often mainstream and do not reach these categories of young people or if they do, they reach them with messages that are inconsistent with their needs and lived realities. The National Sexuality Education Framework was a key milestone in the implementation of sexuality education in schools. However, despite the passing of the National Sexuality Education Framework (NSEF) in 2016, there has been little progress towards its full implementation on account of opposition to key content areas by religious groups and institutions. In a bid to end discrimination against girls and women, the stakeholders should look forward to implementing the decision from the Comprehensive Sexuality Education (CSE) case ruling of 2021 to enable the dissemination of Sexual Reproductive Health and Rights information.

Celebrating the right of everyone to live a full and productive life and live it with dignity is what we recognize today with an ardent focus on highlighting how women and girls can become informed and promote inclusion. You and I can unite and work together in our battle against prejudice by standing up for what is rightfully ours.

The writer is an intern at Center for Health, Human Rights and Development (CEHURD).

Imagine a World Where Social Injustice is a Thing Forgotten

The theme of this year’s World Day of Social Justice is “Achieving Social Justice Through Formal Employment.” However, formal employment is not even enough to aid the end of social injustice, it should rather be gainful employment. Our mothers and sisters still languish on hospital beds and hospital floors simply because they cannot afford to buy Panadol later alone pay for obstetric services. Social justice is a key driver of social development, you and I are part of the wagon where we may be victims anytime.

Victor Ntamugabumwe

“We hold these truths to be self-evident, that all men are created equal, that they are endowed with their creator with certain unalienable rights, that among these are life, liberty, and the pursuit of happiness.” The US Declaration of Independence. The above statement is what truly embodies or fore-runs what humanity is and envisages a world we would all love to live in. The theme of this year’s World Day of Social Justice is, ‘Achieving Social Justice Through Formal Employment.’’

This day is a global observance that certain principles underly the peaceful and prosperous coexistence within and among us. This includes enjoyment of the highest attainable standard of health in our society. Social Justice is the view that everyone deserves equal economic, political, and social rights and opportunities. That this should not be discriminatory based on economic or political will. That for instance, goods and services in health should be available and accessible to all of us. This does hold us (with the government stakeholders) in obligation to ensure that this is the reality. Therefore, this is the day for reflection on the times there has been social injustice in our society whether meted out individually or collectively. These injustices are among other things, unavailability of social goods and services, sexual and gender-based violence. This is a day of reflection on what we as a people have done collectively or individually to end this societal injustice. All of us cross paths with the victims of such injustice, these may be our family members, friends, relatives, or even colleagues we meet daily.

You and i are the beginning point to end social injustice. The government and its stakeholders are accountable to us as individuals and to all of us collectively. What are some of those things that you can do to join the fight to end social injustice?  Firstly, you have to accept that there is social injustice in our society. Secondly, you are part of the wagon where you may be the victim anytime. Then that you can cause a progressive change in your social circles for a fairer and more peaceful world. This will include hunger for access, free flow and dissemination of information on social justice. Teaching and having a progressive discussion as far as social justice is concerned.

The theme for the day is “Achieving Social Justice Through Formal Employment.”  However, formal employment is not even enough to aid the end of social injustice, it should rather be gainful employment. Our mothers and sisters still languish on hospital beds and hospital floors simply because they cannot afford to buy Panadol later alone pay for obstetric services. We had catastrophes during the recent scourge of covid-19 where oxygen and ventilators were expensive to the extent that they would cost a life. The doctors in private practice charge to empty us of every nickel we have when we visit their health facilities for medical assistance. This is but to avoid the rude tones and sarcastic comments from some nurses and doctors when we express the lack of resources or health insurance as we plead before them to save our lives.

Here is for context, the largest number of Ugandans is either unemployed or employed in the informal sector. These obviously do not have access to full employment benefits such as health insurance. Many of those that are employed are only remunerated to survive and these too do not have access to gainful employment benefits such as health insurance. A friend of mine often remarks that Uganda’s population is a miserable one from top to bottom that is susceptible and one illness whether terminal or not away from pure poverty. Advocating for Gainful employment is one way to address this issue, concepts such as the minimum wage and National Health Insurance should be taken into consideration. It is so sad and this is not a reality in Uganda. Creation of policy or a legal framework that encompasses this would go a long way in ensuring that all Ugandans have access to health insurance and that the health facilities that we end up seeking emergency services are actually capable to deliver these services without doctors and nurses looking at us with scornful eyes for our lack of resources. Social Injustice in relation to health is very impactful on the social and welfare development of any society. Ending such in our society should be a dream all of us should dream while we dare to dream.

Imagine a world where social injustice is a thing forgotten. Where there is no sexual and gender-based violence, where our mothers and sisters walk into a health facility and are welcomed with open hands. Would that world not be a beautiful one? I think such a world would not only be perfect but would as well be prosperous; social justice is a key driver of social development. That world would be such a world that we would all love and envy to live in. Be true to yourself and join the fight against social injustice.

Therefore, as we live this day today – let us be reflective on this day and what the day calls us to do; to acknowledge the presence of social injustice and strategize ways to end the same. To understand that, unlike the legal remedies. The remedies to social injustice are within us as a society. That we are the ones who determine the status of social justice and that with an individual and collective effort the same would end.

The writer is an Intern at the Center for Health, Health Rights and Development (CEHURD).

CALL FOR APPLICATIONS : The JAS Media Fellowship On Sexual And Reproductive Health And Rights

Interested in being part of the JAS Annual Media fellowship on Sexual and Reproductive Health and Rights? Download full details about the fellowship and the Application form below;

Deadline: Wednesday, 2nd March, 2022

Un heard voices- tortured by the tongue

What if we consider the human rights angle before looking at someone’s HIV status? Whether one is sick or healthy they are human beings.  It is true AIDS kills but to note is the fact that stigma and discrimination are silent killers. Many people especially the young people living with HIV continue to drop out of treatment, relapse and give up because of stigma attacks.

By Sarah Akampurira

In the early 1980’s, an unknown virus surfaced in Uganda that caused a lot of fear, panic and speculations especially whenever an Individual would lose a little weight showing signs of persistent cough, diarrhea or fever. Speculations of one being infected with the Human immunodeficiency Virus (HIV) would be accompanied by stigma, negative utterances and fear to associate with him/her. This has continued to date affecting the young and old people living with HIV.

A lot of strides have been made by government and other partners to create awareness on HIV, signs and symptoms, transmission, prevention, care and treatment as well as availability of ARVs’ services and indeed, majority of Ugandan adults understand a fact or two about HIV. This knowledge base has a lot of real and anticipated positive consequences in the fight against HIV in Uganda.

What if we consider the human rights angle before looking at someone’s HIV status? Whether one is sick or healthy they are human beings.  It is true AIDS kills but to note is the fact that stigma and discrimination are silent killers. Many people especially the young people living with HIV continue to drop out of treatment, relapse and give up because of stigma attacks.

These are our relatives, friends, workmates that due to our behavior/utterances we continue to send them to “early graves”. On this day as we commemorate World AIDS Day, I call upon all of us to stop fueling acts of discrimination and stigma against People Living with HIV.

  • Sarah Akampurira is a Programme Specialist – Community Health & Empowerment at the Center for Health, Human Rights and Development (CEHURD).

Have you ever imagined the young boys and girls born with HIV who even at some point don’t understand why they are subjected to swallowing tablets on a daily basis and the kind of negativity they deal with in schools, playgrounds without even knowing why? I believe some positive energy, inclusion, dialogue, involvement can contribute greatly to achieve: the overarching goal to bring Uganda to a national coverage of 95-95-95 percent ensuring 95 percent of individuals know their diagnosis, 95 percent of those are on treatment and retained, and of those on treatment, 95 percent have obtained and maintained viral suppression.

To win the fight against HIV requires your effort as well as mine, the government won’t do it alone, research and science won’t but rather an amalgamation of efforts. Together we can actualise this year’s, theme End inequalities. End AIDS.