Learning and Unlearning Our Way to Being Truly Inclusive: A Conversation about Ableism in Fundraising

Chapter Leadership Brief 05.19.2023

By Sunil Oommen, President, Oommen Consulting LLC

Between my consulting work and leadership on IDEA (inclusion, diversity, equity, and access) for AFP-NYC, I have studied and practiced IDEA in fundraising for years. I was wise enough to know I wasn’t an expert on all things IDEA, but that became resoundingly clear when I met a fundraiser at an AFP-NYC event this past January who identifies as hard-of-hearing. She asked me how many people with disabilities are members of AFP-NYC. I did not know. Not even a ballpark figure. We set up a time to have lunch a few weeks later during which she generously shared some eye-opening insights and recounted the various microaggressions she experienced as a disabled person. I was shocked. Then I was shocked at my shock – why did I not know about this? Why am I shocked at this? Those encounters started my journey of reflecting on my knowledge (really, lack thereof) of issues affecting the disability community, about my own ableism, and how we often perpetuate ableism even while ostensibly doing IDEA-informed fundraising.

Since I imagine many of us could also benefit from understanding the issues that the disability community faces in the fundraising sector better, I decided when I was asked to write this week’s Leadership Brief to share the platform with the amazing disability rights advocate, Jen Bokoff, Director of Development at the Disability Rights Fund. I learned so much from our conversation, but as she rightfully counseled, it needs to be more than just learning. Learning and knowing something versus doing something about it are two completely different things.

So, after you read this, ask yourself – like I’m asking myself now – have you examined your own ableism? Try this Washington Post 7-question quiz to start. What did you discover? What can you do to make your organization’s work accessible? How can AFP truly live its IDEA values and be an inclusive and accessible space? What best practices have we championed with colleagues and clients that are actually closing the door on some in our community of fundraisers and philanthropists?  

As you read through this Q&A, I hope you will identify opportunities to apply Jen’s helpful guidance in your work starting right now. As a community of fundraisers who are working towards the public good, let’s commit ourselves to doing just that by taking the time to learn and unlearn, so we can be as inclusive as possible of everyone in our communities.

1. Jen, first, thank you so much for sharing your perspective with me. To start, let's talk about language because, I'm sure you'll agree, words matter. How should we talk about the disability community? What resources do you recommend people consult to learn this?

Words matter big time! Persons with disabilities, or disabled persons, are a global community representing over a billion people, or one in six. Persons with disabilities is called person-first language, and disabled persons is identity-first language. Country or regional context, disability type, and personal preference often affect what style of language is preferred. Across all contexts, it’s really important to use the word “disability” rather than euphemisms (e.g. handicapable, differently abled, etc.). Most important in identifying any specific person is to use the identity descriptions that they use—regardless of what might be perceived as correct by others. It’s also important to name that while there is a large mass of people who are disabled, not everyone identifies as disabled and that global community is not a monolith. There are a whole range of intersectional identities, lived experiences, politics, etc. within the disability community, and sometimes just speaking about a global community erases the power hierarchies and diversities that exist within. 

I love how Emily Ladau talks about language in her book, Demystifying Disability, and for philanthropoids, the resources provided by the Disability & Philanthropy Forum are excellent.

2. What do you wish your fellow fundraisers would know or take into account when working with their fundraising peers who have disabilities? 

We bring lived experiences to the table too, and many of those experiences are of exclusion within our community. For example, the AFP ICON conference in 2022 promised mandatory mask wearing in indoor spaces, which made it feel safer for people like me who are chronically ill and have faced big challenges with COVID-19. Not only was the mask mandate not enforced, but comments about the lack of enforcement were not taken seriously.

I also wish for greater awareness of accessibility within fundraising platforms and customer relationship management systems (CRMs). Vendors seem surprised when we ask detailed questions about this. If you don’t build your tech infrastructure accessibly, it affects who you will hire in the future, and also who can donate to organizations. Build for everyone.

Also, if you think you don’t know any fundraisers without disabilities, you’re mistaken. Plain and simple. Many people are not comfortable disclosing for any number of reasons. Reflect on how you can live values of inclusion every day in every way, and how you might be perpetuating ableism within your organization and in your peer communities. We’ve all done it. Recognizing it and moving forward inclusively is critical. Part of that means you will screw up, and that’s okay. Do it with humility and a learning mindset, and don’t be afraid to ask respectful, thoughtful questions to build your own understanding. I share more in this article that I co-authored with a truly incredible disability justice activist Sandy Ho.

3. For our donors and prospects who have disabilities, what advice or resources would you give so that those of us who are not familiar can work with them in the most respectful and responsible way possible?

Disability isn’t a monolith, so if you know of a particular disability that someone has, definitely ensure everything is accessible to them. But if we build our overall practices so that they meet higher levels of accessibility, it’s a good start to respectful and responsible inclusion. Some things I do:

1. In every meeting/event I schedule, I note what accessibility will be provided and ask if anyone needs anything else. You’d be surprised how many people appreciate this and share something I wouldn’t have known.
2. Provide any materials well in advance and check on the accessibility of those materials.
3. Enable auto captions as a default in virtual meetings (and recognize that this is not the same as live CART captioning, which is required for many people).
4. Don’t call on people randomly—if someone is going to speak, give them adequate heads up.
5. Make sure in-person meetings have physical accessibility to all spaces (don’t just use high-top tables, make sure there’s plenty of seating, make sure bathrooms are usable by all, microphones even for self-proclaimed loud people, etc.), and not just a “back door” entry for people who use wheelchairs (example: a service elevator by trash).
6. Use alt text on all images.
7. Send agendas/run of shows before events, especially multi-hour ones, so people know the scheduled break times accordingly.
8. Know your technology and its accessibility features.
9. Make sure your facilitators are briefed on strong accessibility practices, model it, and pause if something is not accessible to everyone.
10. Acknowledge when needed that some accessibility practices may conflict with each other, and that this is a tension that people may need to sit with and do our best to work around. 

4. Is there anything else you can share so our fundraising community can be more enlightened and take action to support our community of fundraisers and donors with disabilities?

Be in community with us. Read books featuring disabled people written by disabled authors. Follow disability activists on social media. Don’t talk about “DEI” or “IDEA” without genuinely including disability. Compensate us for our time and knowledge—there’s so much unpaid labor educating people about disability. Think about how to be intersectional and accessible in your work even if you are not disabled and your work isn’t explicitly about disability. At Disability Rights Fund and in the broader disability community, when we say “nothing about us without us”, we really mean “nothing without us”—we’re not here for your enlightenment, but to build toward a better future in our sector and world together.