Generative disruption: Disability Symposium caps three-year research project

Young people with disabilities continue to struggle in the transitions between secondary school, tertiary education, and the job market. “We want to disrupt things,” said Professor Roshan Galvaan, the head of the University of Cape Town’s (UCT) Department of Health and Rehabilitation Sciences in the Faculty of Health Sciences. “But it must be generative disruption; discomfort that generates change.”

Professor Galvaan was speaking at the start of the Disability Symposium on 25 November to cap the three-year international research project, Transitions of Youth with Disabilities in Education Systems (TYDES).

The project is a collaboration between UCT’s Division of Disability Studies, the Centre for the Advancement of Community Based Rehabilitation, Queens University in Canada, the University of Gondar in Ethiopia, and Ashesi University in Ghana.

The study was funded by the Mastercard Foundation, which supports the Mastercard Foundation Scholars Program (MCFSP) at UCT. The MCFSP is the largest initiative of its kind worldwide. Their partner network includes 40 higher education institutions and non-government organisations – and more than half are African.

While the Mastercard Foundation provided funding for the study and symposium, the partnership with the foundation has also provided an important model, Professor Theresa Lorenzo noted.

“The Mastercard Foundation wanted to know more about what they could do to create more inclusion for disabled staff and students across the education system.”

Impediments to education

While education is key to developing young people, those with disabilities often face insurmountable barriers and opt out of schooling or tertiary education, with bleak prospects for their lives and full participation in society.

“What do we need to do differently in education? What research opportunities are there in this space?”

In her welcome, Galvaan added, “What do we need to do differently in education? What research opportunities are there in this space? What opportunities are there to shift from known ways of doing things and knowledge and ask the question: What more do we need to do? What more could we be doing to contribute?”

After 20 years of running the disability studies programme at UCT and the many strides made, there is still a lot to learn, Professor Lorenzo confirmed. But the research undertaken in the area must be translated into actionable, tangible development, she added.

Collaborations such as the TYDES study are essential too and the opportunities to work with colleagues abroad and particularly in Africa had been most welcome, said Galvaan.

“The TYDES acronym is apt; the programme has bought waves of change and is building a more disability-inclusive world.”

Collaboration is key

The symposium, held at the UCT Graduate School of Business campus, was the first time in three years that the collaborators met, partly because of COVID-19 lockdown. The themes covered included:

• middle school (Grades 7–9)
• high school youth with disabilities (Grades 10–12)
• out of school youth with disabilities
• university youth with disabilities
• disability as a curriculum change imperative
• disability as a transformation and social justice imperative
• key influences and considerations in transitions for youth with disabilities to succeed.

The focus on TYDES’ participatory action research methodology was also evident at the symposium. Groups of young people – learners, students, and graduates with different disabilities – were part of the panel and plenary discussions. They were also core members of focus groups held by the research teams in the participating countries.

Using these platforms, they were able to share their struggles and challenges as well as their tenacity and successes, together with what they need from education systems to develop their potential and fully participate in society.

“It’s brought youth together as co-researchers,” said Galvaan. “This is an area we’ve invested in, also recognising that they are the leaders of tomorrow and we don’t have to wait until tomorrow for them to co-lead right now.”

Key findings, authentic voices

These struggles were captured in the TYDES study and grouped into four primary areas:

• discrimination, bullying, stereotyping and low expectations
• insufficient educational basic need resources
• inadequate teacher training, accommodation, and inclusive pedagogy, especially for those with vision and hearing impairments
• limited access to technological assistive devices.

Identified among the facilitators for the development of these young people were:

• participation in sports and cultural activities, to enhance self-confidence and personal agency
• personal coping strategies, perseverance, self-advocacy, and resilience.

Among the panellists was learner Lubabalwa who said his support had come came from his family. But his father wanted to protect him and keep him apart from other children, fearing he might get hurt. Lubabalwa’s reply had reflected his sense of agency: “I choose to be there. They must know who I am.”

What would have supported his dream?

“For government to help us as disabled learners; provide more resources such as ramps for wheelchairs, and more opportunities like this to engage. Make buildings accessible. Create more access to information.”

Deaf learner Hamza attends a school for Deaf learners but is also an ardent justice activist who dreams of becoming president of the country.

“All children must know they have human rights,” he said through a Disability Service’s sign language interpreter.

Student Asiphe spoke of the frustrations of inaccessibility.

“Going out to university, it’s another world. Because of the structure, you can’t go … you can’t do ... But you want to be someone. You want to work.”

Yaaseen, a master’s graduate in environmental and geographical science, has a speech impediment. He recalls feeling isolated at university.

“The UCT Disability Service was my safe space. Their focus was on our lived experiences. The great thing about studying, it made me reflect on my strengths and my resilience.”

But the difficult transition had been from university into the workplace. Colleagues were uncomfortable and impatient with his stammering, and he did not get a chance to share his ideas. He became withdrawn, he said.

Curriculum change

Curriculum transformation is essential to changing the status quo for youth with disabilities, to teach about disability, sensitise learners and embed it in teacher training.  

“We’re calling for humanising pedagogies,” said Professor Kasturi Behari-Leak, the dean of UCT’s Centre for Higher Education Development (CHED). “We’re also talking about a pedagogy of care with the curriculum in teaching.”

“It’s an indictment on society that in 2022 we still have to plead for the curriculum to be inclusive.”

She added, “It’s an indictment on society that in 2022 we still must plead for the curriculum to be inclusive … The curriculum is the place to start in thinking about inclusion … and the extent to which students with disabilities are knowledge generators, despite impairments and all the impact of this on their own lives.

“We underestimate how much power the curriculum has – whether it is a course or a module, or the readings we share with our students.”

In her feedback, the head of UCT’s Disability Service, Edwina Gall, said one of the glaring holes in conversations about disability is the storytelling.

“It is the most important thing for me. But it is absent. It is because every disability has its own story. It is unique. And we cannot transform or be inclusive if we have not listened to [people’s] stories.”

Benefits of collaboration

The collaborative nature of the TYDES study had many benefits, said Dr Peter Ndaa, an occupational therapy lecturer at the University of Ghana. But the key had been working with different people from different regions towards a common goal related to disability.

“[This] has exposed me to the commonalities and differences in the experiences amongst people with disabilities. The dissemination symposium has taught me of the need for relentless advocacy to see people with disabilities as among us – and not as [an] afterthought.”

Nina Okoroafor, of the Ashesi University in Accra, Ghana, said Africa as a third-world continent offers national governments and international development partners “a beautiful opportunity; a drawing board to emulate and redesign economic, political and educational policies that fit our peculiar socio-cultural contexts”.

“All stakeholders should review their perspectives of disability through increased consultations with those living with disabilities…”

“Among other things, the TYDES research revealed the disconnect between educational policies and strategies for social inclusion of youth with disabilities and implementation.”

Consultation with youth with disabilities is key, she added.

“All stakeholders should review their perspectives of disability through increased consultations with those living with disabilities, organisations for persons with disabilities and disability champions.

“Further suggestions are being made for a recognition of the heterogenous nature of disability … not only physical barriers to participation in society, but behavioural, visual, communication, developmental, mental, and other sensory impairments.

“For this reason, we must apply the principles of reasonable accommodation and universal design in rolling out policies and programmes for disability inclusion.”