DCDD and We are Able! continued the Power of Disability Inclusion series with a new session, ‘Meaningful Participation of Organisations of Persons with Disabilities,’ on June 27th, 2024, this time with a twist. The session was organised in a hybrid format to facilitate overseas participants and representatives from Burundi and allow in-person exchange with representatives from the Democratic Republic of Congo (DRC).

What is meaningful participation?

Meaningful participation involves actively including persons with disabilities in decision-making processes that impact their lives. This is critical because Persons with disabilities are often excluded due to stigma and prejudice. The UN Convention on the Rights of Persons with Disabilities emphasises inclusion with the principle “nothing about us without us.” True meaningful participation requires not just information provision en consultation but also joint decision-making, joint action, and allowing organisations of persons with disabilities (OPDs) to set the agenda. The last three steps define meaningful participation.

According to the International Disability Alliance’s Global Survey on Participation of Organisations of Persons with Disabilities in Development Programmes and Policies (2020), there are slow and steady increases in the influence of OPDs influence and engagement with international partners. The OPDs are consulted on a wide array of issues, typically reflecting their priorities. However, challenges still exist. Engagement with governments is waning, and participation in decision-making processes remains inadequate. Many disability groups continue to be excluded from these critical discussions. Additionally, essential conditions for participation, such as accessibility modifications and reasonable accommodations, have generally worsened. OPDs are also hindered by a lack of capacity, resources, and opportunities to engage meaningfully. The COVID-19 pandemic has exacerbated these issues, disproportionately impacting persons with disabilities and further disrupting the work of OPDs.

Meaningful participation of Organisations of Persons with Disabilities in We are Able! programmes

During the session, the discussion shifted from theory to practice, highlighting real-world applications of meaningful participation of organisations for people with disabilities (OPDs). Paulien invited Jasper Oei from the SeeYou Foundation to share his experiences with the We are Able! programme on a global scale. The programme works with 3 Pathways of Operation, in which:

1. Community Mobilisation: Encouraging community participation and membership in OPDs to ensure representation and support at the local level.
2. Strengthening Organisations: Supporting local and national OPDs to maintain connections with members and work effectively with local authorities.
3. Government Engagement: Ensuring OPDs can align community needs with government policies and advocate for disability rights.

We are Able! focuses on 4 key areas, namely:

1. Legislation: Assisting OPDs in gaining legal recognition to advocate effectively.
2. Membership: Ensuring OPDs have active members who can seek support and services.
3. Financial Management: Supporting OPDs in managing budgets and maintaining accountability.
4. Lobbying and Advocacy: Raising awareness of disability rights and addressing specific issues like food security with local authorities.

Jasper explained that We Are Able! employs tools for shifting power, allowing OPDs to identify and decide on key areas for empowerment, such as decision-making and financial management. Additionally, Country Disability Advisory Boards advise the Century Project Steering Committee, ensuring OPD representation in decision-making. The dynamic between local and national OPDs was also highlighted. Local OPDs often have more developed systems, creating tension with national OPDs that represent broader regions. Addressing the diversity of OPDs—whether they focus on visual, hearing, or physical impairments—is crucial for effective representation and advocacy.

With the success of the programme, Jasper also mentioned the valuable lessons he learned:

1. Confidence in Leadership: OPDs are increasingly invited to discussions and decision-making processes, enhancing their influence.
2. Access to Subsidies and Schemes: OPDs have improved access to government policies and subsidies.
3. Positioning to Influence Laws: OPDs are better positioned to participate in policy reviews and budget discussions, ensuring disability considerations are included.

Meaningful participations of OPDs in DRC

The representatives from DRC (Marcellin Batumike Buhendwa—African Disability Forum, Christophe Kabene Rugishi—Network of Organisations of Disabled People in Kalehe/South Kivu DRC, Gervais Ntawenderundi Nkiri-Nayo Rubenga II—Rubenga Chiefdom) further shared their experience in their country. They provided an in-depth overview of the We Are Able! programme and its collaborative efforts with local governments in the DRC.

The speakers discussed the challenges faced by people with disabilities in accessing land and other resources. They identified key obstacles, such as lack of representation in decision-making processes, physical inaccessibility, and financial barriers. Despite these challenges, the speakers shared successful examples of advocacy and community mobilisation. They spoke of raising awareness about the rights of people with disabilities, advocating for inclusive policies, and facilitating access to land and resources through coordinated efforts with local authorities and civil society organisations. 

Eighty-one cases of discrimination against women in accessing family inheritance, involving fifty women and thirty-one men with disabilities, were identified. In response, four local decrees were signed to ensure equitable sharing of family inheritance. Additionally, exemptions from certain local taxes were granted to people living with disabilities, as seen in the Rubenga chiefdom. Furthermore, a person with a disability was included in the community decision-making sphere, such as the village chief of Ngula in the Rubenga chiefdom. An exchange framework was also established at the provincial level and interservice level to discuss the rights of persons with disabilities in accordance with the organic law.

Conclusie

In conclusion, the session on ‘Meaningful Participation of Persons with Disabilities’ underscored the transformative potential of inclusive practices in decision-making processes. By showcasing the real-world applications of the We Are Able! programme, the event highlighted the essential role of OPDs in advocating for disability rights and influencing policy. The shared experiences from the DRC emphasised the importance of overcoming barriers such as representation, accessibility, and financial challenges. The session reaffirmed that meaningful participation—characterised by joint decision-making and agenda-setting by OPDs—could lead to substantial advancements in social inclusion and empowerment for persons with disabilities.

At the end of the session, DCDD shares a digital goodie bag with relevant resources. Keep an eye on our website for more updates on the next Power of Disability Inclusion series session.