The ‘anti-grit memoir’: Eddie Ndopu re-imagines disability activism

When South African Eddie Ndopu received a scholarship from Oxford University in England, he was thrilled. But he was also worried: As a wheelchair user, how would he fare in a place paved in cobblestones, where many of the buildings were constructed well before the 20th century?

Mr. Ndopu is able to move “one good finger,” and he relies on an assistant 24/7. Despite the challenges, he has worked with Amnesty International and is currently the youngest person serving as a sustainable development goals advocate with the United Nations.

His new book, “Sipping Dom Pérignon Through a Straw: Reimagining Success as a Disabled Achiever,” recounts the challenges and triumphs of his experience living with a disability at one of the world’s most prestigious universities. He spoke recently with the Monitor.

Was this book an outgrowth of your master’s thesis at Oxford?

I knew I wanted to produce something on disability and public policy. I wanted to figure out what needs to go in my toolbox as an advocate in order to better understand policy, better inform how policy gets made.

The irony is that I ended up learning more from my lived experience than I did from the classroom. It’s not what I’d expected and it’s instructive, but also there’s a deeper injustice and unfairness there. I wanted to go to Oxford so that I could have a sabbatical from my life and just enjoy living a life of the mind, delving into concepts and having the opportunity for intellectual curiosity. Instead, my life became the case study where I had to dissect my experiences and offer them up for academic inquiry.

My thesis was around the limits of compliance-based thinking, the limits of reasonable accommodation – a concept that has really been at the cornerstone of international disability policy. I really had to come to terms with the fact that I felt a visceral opposition to reasonable accommodation. It just felt insufficient as an analytical framework to accord people with disabilities the kind of dignity that we need. 

The thesis of my life is the argument that if we get free as disabled people, then we all get free. If we can accord the most marginalized, the most vulnerable among us, freedom and agency, then we all benefit; there’s a ripple effect. If we provide the care and the resources and the investment in the most marginalized among us, then that benefits us, too. Because when we find ourselves in a position where we need to contend with the fragility of our own lives, of our own bodies, then we are prepared for that. We can take comfort in knowing that the systems and ecosystem exist to care for everybody. And I think that’s really the point.

You endured indignities at Oxford, and the book demonstrates that even a well-endowed, well-intentioned institution is not always prepared to include people with disabilities. Has anyone in the university’s administration read the book, and have you gotten any comments from them?

So far as I know, no. It will be quite interesting to see what the feedback will be.

I hope that the way I’ve written the book, it’s clear that it’s certainly an indictment [of] Oxford, but I think Oxford is a microcosm of institutional life writ large. I tried to make the point that you could swap Oxford out for any organization or institution, and people with disabilities will probably have similar experiences to share about the ways in which they’ve experienced institutional life and the ways in which compliance and the language of reasonable accommodation have continued to fail people with disabilities in so many ways. So, I hope that Oxford officials, when they sit down to read the book – if they read the book at all – that they will see it as an invitation rather than an admonishment in terms of thinking about how they can take the task of making the institution more open, accessible, and inclusive seriously. That would be my hope.

You went to undergraduate school at Carleton University in Ottawa, Ontario. Did you experience the same challenges there?

Carleton was an eye-opening experience for me in the same way that Oxford was, but different, in the sense that Carleton had its own dedicated attendant services program – other students looking for work were trained to provide care for students with disabilities living in residence. It was a 24-hour program, they were on call, and they worked in shifts. It was truly a mind-blowing experience for me because this program truly embraced the social model of disability in the sense that this was not an institutionalized setting in the medical sense of the word. This was a practice in what it could look like for students with disabilities to be truly integrated into the university. The ethos of independent living, of autonomy, of agency, all of this was practiced on a day-to-day basis through this program. 

I was incredibly lucky to have had that exposure when I did because it provided a template for me as far as knowing what is truly possible. That’s why Oxford was particularly surprising and heartbreaking, because I knew that what I was yearning for was not impossible, because I experienced glimpses of this in my undergraduate years.

How do you stay resilient?

The older I’m getting, the more I hope that I will be able to graduate from having to be resilient. I think that resilience is officially outdated. I do think this is the next frontier of our advocacy work. We need to hold space for people with disabilities to feel everything – to feel tired, to feel exhausted, to feel drained, which is what I constantly feel.

This book for me is my anti-grit memoir, because grit is wonderful. I am where I am because of grit. But grit on its own is an insufficient tool for liberation and equality. We can’t put all the onus on the individual in the absence of thinking about systemic reform. I’m changing society. And I think that I’ve gotten to a place in my life where I don’t want to be resilient anymore. I want to have joy. I want to be a little bit frivolous. I want to live my life. That’s what keeps me going. At the fundamental level, I love life. I don’t think that has anything to do with my disability, but I want to experience everything. I want to be awake and alert and to live as fully as I possibly can. 

Until I feel like I am filled up, I’m just going to keep wanting more. It’s really a profound yearning and appreciation for living.