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 15^th 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 4^th 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).

Despite progress in closing the equality gap, 91 percent of men and 86 percent of women hold at least one bias against women in relation to politics, economics, education, violence or reproductive rights.

By Decent Kamukama

For so long, the woman has been under looked, undermined, mistreated and discriminated against, despite efforts to break the bias. Failure to accord the girl child and women equal opportunities in schools, workspace, and the community has continued to be an issue in our communities. Today, March 8th, 2022 we celebrate International Women’s Day under the theme, Beak The Bias. In commemoration of this day, we aim at building the belief that women want and deserve an equal future free from stigma, stereotypes and violence since advancing gender equality in all aspects is one of the greatest global challenges of the century. It is evident that this will require women at every table where decisions are being made in order to guarantee a future that is sustainable, peaceful, with equal rights and opportunities for all. As Meghan Markle said, “Women need a seat at the table, they need an invitation to be seated there, and in some cases, where this is not available, they need to create their own table. We need a global understanding that we cannot implement change effectively without women’s political participation.”

Biases against women are not a new thing to all of us as we have experienced or seen it happen in our daily lives fueled by people of all gender. Almost 90 percent of people are biased against women, according to the “shocking” extent of the global backlash towards gender equality. Despite progress in closing the equality gap, 91 percent of men and 86 percent of women hold at least one bias against women in relation to politics, economics, education, violence or reproductive rights. The women’s rights demonstrations we’re seeing across the world today, energised by young feminists, are signaling that new alternatives for a different world are needed,” said Raquel Lagunas, UNDP Gender Team Acting Director.  “We must act now to break through the barrier of bias and prejudices if we want to see progress at the speed and scale needed to achieve gender equality,” she added. The biases against women affect them in schools, leadership positions, workplaces, and also push to their families and communities. The ripple effect of these biases is that women have in turn been denied access to information relating to their health and sexuality, increased cases of sexual violence as well as physical violence. The situation is even worse when it comes to cultural biases where the general perspective is that it is better to have qualified men only in leadership positions than to enforce affirmative action and have less-educated women. All this can be done away with collective effort from both men and women, young and old.

It is pertinent to note that there are laws that have been put in place in Uganda that uphold the rights of women such as the National Objectives and Directive Principles of State Policy, which provide for the obligation of the State to recognise the significant role played by women in society. As such, the constitution further recognises the rights of women and insists that women shall be accorded full and equal dignity of the person with men. We are also cognizant of the fact that the State has an obligation to protect women putting into account their unique status and maternal functions. However, despite all the express provisions elevating women’s rights and all, there are still existent loopholes in the full realization of the same. Most women have continuously encountered the trauma of stereotypes and violence in society which depicts little or no significant impact of the legal framework that has been put in place to elevate women. As we celebrate Women’s Day this year, we call upon the stakeholders and law enforcers to ensure that the laws in place to protect women against all biases are respected and fully realized. This will in turn reduce the maternal mortality rate, victims of sexual-based violence as well as victims of harmful cultural practices such as female genital mutilation.

While addressing biases against women, we at CEHURD recognise that female genital mutilation is an abhorrent human rights violation based on the bias that has for so long been used by men under the guise of culture to control sexuality of women these being their wives and daughters. We however believe that all these biases can be broken.

A woman is powerful, energetic, wise, brilliant, innovative, creative and much more to be regarded as  “the weaker sex”. Regardless of gender, International Women’s Day is a beautiful moment for all of us to reflect on and celebrate the strides made in women’s empowerment globally. Let us join hands and provide equal opportunities for the girl child to access education, sexual reproductive and health rights. Together, we can take it further and make more progress in support of women’s rights socially, economically, culturally, and politically. We can achieve a gender-equal world, free of bias, stereotypes and discrimination, a world that is diverse, equitable and inclusive. We can altogether realise a world where difference is valued and celebrated and work towards achieving women’s equality. Collectively we can all #BreakTheBias

The writer is an intern at the Center for Health, Human Rights, and Development.

CEHURD) with Partners in Community Transformation (PICOT) are implementing a two-and-a-half year Action in the districts of Koboko and Maracha, under the Development Initiative for Northern Uganda (DINU) with support from the European Union through the Office of the Prime Minister. This Action is titled “Integrating Legal Empowerment and Social Accountability for improved local government performance and governance (LESA Action)”.

Since the implementation of this project, considerable gains have been registered across the two districts of Koboko and Maracha; the continuous sensitization and dialogues in the last two years have had a great impact on the mindset change of the community towards community participation. The principle of participation as a tenet of governance is important because communities are far more attuned to what they need for their development, which helps them build and improve their confidence.

Community members have a role to play in lower planning and budgeting as stakeholders, taxpayers and end-users of all government services. Community participation paves way for self-development and contribution because it not only provides valuable local insight but also instills a level of accountability. With information, it becomes easier for communities to detect instances of resource mismanagement and corruption.

Gender mainstreaming is a public policy perspective and practice that entails assessing and including the concerns, experiences and different implications for people of different genders in any planned policy action, including legislation and programmes, in all areas and levels so that women and men benefit equally and inequality is not perpetuated (adapted from the United Nations Economic and Social Council (ECOSOC), July 1997). The achievement of gender equality and empowering all women and girls is one of the Sustainable Development Goals (SDG 5).

The Legal Empowerment and Social Accountability (LESA) intervention has registered great improvement towards improving community participation and involvement in governance at the lower local government planning process in the two districts of Koboko and Maracha. This has been registered as a result of the continued sensitizations and engagements conducted that have empowered communities to participate actively. Women’s participation in the region has been low given the cultural and social norms surrounding women participation which undermine women’s involvement.

As we celebrate #InternationalWomen’sDay2022, the LESA Action has been able to register a great improvement in women’s participation in the last two years. The realization of gender participation in planning and budgeting is a strong precursor of achieving equitable community participation and budgeting and transformative development.  

Compiled by the CEHURD DINU-LESA Team.