We can start from the very beginning—your story with Ashoka. How did it all begin?

I was an entrepreneur myself, running a digital network for professionals and families of people with intellectual disabilities. This was more than 13 years ago, when online networks were still new. I created a website that offered checklists; solutions shared by parents; for everyday challenges, like brushing a child’s teeth or managing sleep routines. The idea came from baby books, which provide checklists for parents, but nothing existed for families with disabled children. The network grew into a valuable resource, with practical advice for everything from dental care to puberty. That’s how I first heard of Ashoka. Fast forward to recent years: I returned to Ashoka because I’ve continued working in the disability field. My child, now 31, has disabilities, and I’ve always been active in this space. My husband and I set up a charitable foundation - the Seneca Trust - to support initiatives that promote inclusion and accessibility, with a primary focus on intellectual disabilities. Our mantra is “gaps between the gaps”—we fund projects that rarely receive resources or attention. Initially, I approached Ashoka hoping to find social entrepreneurs working in intellectual disabilities. But I realized Ashoka didn’t have a dedicated stream for disability—either entrepreneurs with disabilities themselves or those working in the field. So, together with Ashoka, we launched research to systemize disability within the organization. That work is now underway: Ashoka is mapping social entrepreneurs with disabilities and those working in disability inclusion. From now on, a percentage of Ashoka Fellows selected will always represent this field.

And what outcomes stood out to you? Any surprising results?

It’s not really about the outcomes. The exercise is about something more important: everywhere I go, intellectual disabilities are overlooked. Philanthropy and organizations tend to focus on physical disabilities, with far fewer initiatives addressing intellectual disabilities, and even fewer for complex needs. My work is about mainstreaming intellectual disability inclusion across all sectors. Ashoka is helping me do this with social entrepreneurs, but I’m also working in other fields, like refugee systems. The goal is to ensure that people with intellectual disabilities have equal access to services and opportunities. It’s about embedding accessibility into the mainstream, not just producing findings. 

Why do you think intellectual disability inclusion is often overlooked?

Let me start with the core reason. People with intellectual disabilities cannot advocate for themselves — by definition of their disability. There is no other disability where the person is unable to self-advocate. I'm speaking as a parent of someone with severe learning disabilities. My son lives in supported accommodation. If he lived with me, I simply wouldn’t be able to cope physically or emotionally. He needs a team. I’m one of the lucky ones — many families don’t have that support. So, the issue gets overlooked because everyone connected to it is under-resourced, overwhelmed, and exhausted. That’s a major factor.

 

Deborah Grundle4

Systemic Exclusion

Moving from the “why” to the “how” — what would need to change from a systems view?

Let me give you an example. I once met with one of the major banks and spoke to four heads of programmes in their philanthropy department. I asked: “Do you have a dedicated focus area for disability?” Their answer, to my shock, was: “Anyone who is disabled can access whatever services we support.” That response is very typical — globally. People assume disability doesn’t require a distinct strategy or stream. They don’t understand that disability — intellectual or physical — requires different thinking, different access, and specific inclusion. 

Here’s a stark example. Across the world we have wars, floods, fires — and wonderful emergency organisations responding. But if you have a disability, will those emergency responders be able to help you? Usually, the answer is no. They often don’t know where disabled people are, how to reach them, or how to support them. In most crises, the highest death rates are among disabled people. That alone shows why disability must be treated as a dedicated stream, not an afterthought.

Turning to Ashoka ASN — what is working well, and are there any areas for improvement?

The work we’re doing with Lorena García Durán; a Global Ashoka staff member, has been crucial. Historically, Ashoka hadn’t mainstreamed disability. Yes, there were Fellows with disabilities and Fellows working in the field, but that happened by chance, not by design. Now there is conscious effort. Around 22% of any population has some form of disability — not even counting temporary disabilities. The Ashoka network did not reflect that. After our work together, the organisation is aiming to correct that imbalance and become more aware and more supportive. Disability has been under the radar — and Ashoka is now addressing it.

Deborah Gundle

Value in ASN

Why didn’t you become an Ashoka Fellow yourself?

Being part of the ASN connects me to social entrepreneurs and supporters — my people, my community. That matters deeply. It also allows me to help identify and support social entrepreneurs through the network. I’ve also run my own social entrepreneurial projects — for example, creating the first purpose-built accessible and inclusive public playground. That alone could qualify me to apply as a Fellow. I also have access to resources through my own network. So, my contribution is more valuable as an ASN member than as a Fellow.

Deborah Gundle archive

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