Celebrating Mothers with Deafblindness in the ASSIST Project
Published on the occasion of International Deafblindness Day, 27 June 2025
Today marks the first official celebration of International Deafblindness Day, recognised last week by the United Nations General Assembly. While the deafblind community has long honoured this date—commemorating the birth of Helen Keller (1880–1968)—this year brings renewed global visibility.
Helen Keller was an American author, educator, and trailblazing advocate who became deafblind at 19 months old. With the support of her teacher Anne Sullivan, she became the first deafblind person to earn a university degree. Her legacy—fighting for disability rights, education, and inclusion—continues to inspire generations worldwide.
The UN resolution not only acknowledges the unique human rights challenges faced by persons with deafblindness, but also formally recognises the red and white striped cane as a vital tool used by the deafblind community for mobility, safety, and identity.
To mark this occasion, the ASSIST Project is shining a light on a particularly underrepresented group: mothers with deafblindness.
Deafblindness remains one of the most marginalised and overlooked disability experiences. Most persons with deafblindness face persistent barriers to communication, information, healthcare, and basic services. For women, these challenges often intersect with gendered discrimination in maternal and reproductive healthcare.
Through the involvement of our project partner, the World Federation of the Deafblind (WFDB), the ASSIST Project ensures that the experiences of women with deafblindness are not only included but actively centred. Their participation has enabled us to surface the specific challenges—and strengths—of this community in accessing maternal care.
“They said I couldn’t raise a child. But I am doing it—with love and strength.”
— Focus group participant (mother with deafblindness, Croatia)
Spotlight on Croatia: A Groundbreaking Contribution
As part of the ASSIST Project’s work, the WFDB collaborated with its national member in Croatia, DODIR, to carry out in-depth research into the experiences of mothers with deafblindness.
Through a combination of literature review, focus groups, surveys, and in-depth interviews, the researchers uncovered systemic barriers that disproportionately affect women with dual sensory impairments.
What emerged was a clear pattern: mothers with deafblindness are routinely excluded from maternal healthcare planning, communication, and service design. Their experiences shed light not only on physical and informational inaccessibility but also on the absence of inclusive care protocols across Croatia’s healthcare system.
“No one even considered how I would understand the procedure.”
— Mother with deafblindness, Croatia
“Doctors talked over me, not to me. It was like I wasn’t there.”
— Mother with deafblindness, Croatia
This finding, echoed across qualitative and quantitative data, underscores a critical gap—not just in communication support, but in recognition, respect, and rights. The Croatian case study stands as a powerful call to action: any effort toward inclusive maternal healthcare in Europe must centre the voices of those most systemically excluded.
Key Findings
- Communication barriers led to feelings of isolation, anxiety, and dismissal by providers.
- Many felt their reproductive decisions were not respected.
- Most reported no discussions about family planning with healthcare providers.
- 100% of deafblind respondents were not screened for postpartum depression or anxiety.
“No one asked how I was feeling after the birth—not once.”
— Survey respondent (mother with deafblindness, Croatia)
Despite these challenges, participants also shared powerful moments of dignity—often thanks to individual professionals who went out of their way to listen, adapt, and offer respectful care.
“One midwife stayed with me the whole time, learned some signs, and treated me like a human being. That changed everything.”
— Mother with deafblindness, Croatia
“It was only when I met a nurse who knew tactile signing that I felt safe.”
— Mother with deafblindness, Croatia
Why This Matters
These findings do more than document hardship. They reveal systemic design failures—not individual missteps. They highlight a lack of inclusion in policy, data collection, and provider training that must be urgently addressed. Most importantly, they offer a roadmap for reform grounded in lived experience.
The research team has issued clear recommendations for governments, healthcare systems, and advocacy groups. These include:
- Integrating disability-specific maternal health policy which includes the perspective of mothers with deafblindness.
- Training all healthcare providers in inclusive communication.
- Ensuring that women with deafblindness are included in healthcare planning and data.
- Making mental health a core pillar of maternal care.
A Call to Action
Today, on the first official International Deafblindness Day, we call on all stakeholders—policymakers, healthcare workers, and communities—to recognise the rights and realities of mothers with deafblindness.
These women are not invisible. They are simply being overlooked. Through projects like ASSIST, we are making sure their voices are heard, their needs are recognised, and their rights are upheld.
“I want my daughter to grow up in a world where her mother’s voice matters.”
— Mother with deafblindness
Join us in advocating for inclusive maternal healthcare—and in celebrating the strength, dignity, and resilience of mothers with deafblindness everywhere.
Updates on the project
Ensuring that mothers with disabilities have access to equitable, respectful, and rights-based healthcare is not just a goal, it’s a necessity. The ASSIST project is proud to announce the completion of a groundbreaking training program that equips healthcare professionals, caregivers, and advocates with the tools to challenge discrimination and create more inclusive care systems.
The ASSIST training course consists of 6 impactful modules, each addressing key aspects of inclusive maternal healthcare:
- Module 1: Challenging Attitudinal Barriers – Break down harmful stereotypes and build a culture of empathy
- Module 2: Promoting Respectful and Modern Care – Improve communication, understanding, and interdisciplinary collaboration
- Module 3: Understanding Reproductive Rights – Ground care practices in legal frameworks and rights-based approaches
- Module 4: Building Accessible Healthcare Spaces – Make health facilities welcoming and barrier-free for all
- Module 5: Recognizing the Role of Caregivers – Support those who support mothers, emotionally and practically
- Module 6: Fostering Civil Society Advocacy – Strengthen voices, build networks, and drive policy change
This course is a major step forward in making maternal healthcare systems truly inclusive and responsive to the needs of all mothers—regardless of disability. Stay tuned for the official launch!