Most of us pledge our support to humanitarian causes across the world in the form of donations, awareness campaigns and fundraising events. Yet it is much less common, however, to encounter someone who has dedicated much of their life towards actively making positive changes happen, for some of the people who need it most. Jessie Honnor has had the privilege of interviewing Daniel Lundberg, who has spearheaded the Ghana Strong Books organisation, an initiative that seeks to represent the issues faced by those suffering disability in Ghana, while also fundraising for disability rights projects.
Why did you choose books as the method to change people’s views on disability?
In my mind, inclusion is all about imagination – being able to imagine the potentials of people despite the barriers they might face in their lives. Sometimes, technology and inclusive culture exists to enable people with disabilities to overcome almost any obstacle that society throws at them, and other times, that technology and culture does not exist yet, and our only hope is imagining it and working toward what we imagine.
I chose books – specifically young adult books in the fantasy/adventure genre – because I was struck by the irony that this highly imaginative genre – which has the potential to do so much to expand our imaginations about the potentials of people – rarely touches on issues of inclusion or includes characters with disabilities.
It must have been scary taking leave from university to work full-time on disability rights in Ghana. What made you decide to take such a big step?
It was an extremely difficult decision. Many people were telling me “You can’t solve this challenge in a year, so why bother taking the year to go work on it. Why don’t you wait?” My response was simple – it is only going to get harder, the older I get to prioritize my work on disability rights in Ghana. If I fail to prioritize it now and demonstrate to my friends in Ghana that I am making this my life or a big part of my life, I never will. I will be one of so many people who visit Ghana, see the challenges facing people with disabilities, decide they want to do something, and don’t.
On a more practical level, I felt that the experiences I had gained during my first trip to Ghana and the unique leaders I had met with disabilities and neuromuscular conditions put me in a unique position to do or learn something meaningful. I returned to Ghana not necessarily trying to “solve things in a year” but to understand why things aren’t being solved and try to figure out intellectually how we can solve this. Being in Ghana for an extended period of time, living alongside very marginalized people with disabilities has given me a very nuanced perspective on disability rights here that I think most people working on development entirely lack. Before we try to help, I think it would behove us if we all spent a little more time learning how to help and understanding the problems firsthand on a local, grassroots level.
I hear you did a once-a-month marathon challenge! How did that come about, what was the result of it and is it something you would consider doing again? What other fundraising have you done/might you try?
I did! I ran my first marathon in Boston in 2013 as a member of the Campus School marathon team at Boston College. We are a group of runners who used to get together every year and run the Boston Marathon to raise funds for a school on our university campus for young adults with disabilities. This charity marathon was my first marathon, and I finished in just over four hours, a few minutes before the marathon bombings occurred.
Like so many people, I wanted to do something to respond to the attacks, and so I decided to run six marathons over six months as a way of channelling “Boston Strong” into “Ghana Strong”. I finished all of them!
I ran my first ultra-marathon (50 K) just last month in Houston and finished. I’m planning for my next race to be another ultra-marathon.
As my perspectives on disability rights have progressed, I have stopped viewing disability rights as a charity issue. It is a global development and human rights issue, and I would prefer to have my projects funded by sustainable social enterprise rather than fundraising. Ideally, in the future, I will run my races solely to raise awareness.
What has been your most memorable experience with regards to your advocacy work?
Hearing the stories of older people with disabilities who were forced over the years to live in spiritual or witchcraft camps to heal their disabilities. You hear some truly horrific things that could have all been avoided with a little education about the causes of disability.
What has been the most rewarding element of founding Ghana Strong Books?
I did a February book tour where I spoke to students and interested people in Minnesota, Wisconsin, Boston, and London. It was very rewarding to talk to other people about my perspectives on development. To give a specific example, one of my greatest frustrations is that a few international non-profit groups are still building accessible schools in Ghana. I met a number of people who were interested in educational development issues in Ghana, and accessibility isn’t something they had necessarily been thinking about. Being able to put this on their radar was immediately impactful, which was nice, because so much of what I work on is slow, long-term work.
What progress have you seen in the area since you started your advocacy work?
Where I have seen measurable progress is surrounding cultural attitudes toward people with disabilities. There are two challenges for people with disabilities in Ghana – 1) cultural attitudes and 2) inaccessibility (to transportation, financial empowerment, education etc.). The accessibility challenge is very difficult to solve, but we are seeing progress on the cultural attitudes.
I collaborate on an educational project called the Disability Ghana Awareness Project (www.disabilityghana.org) with the Disability Needs Foundation, a Ghana-based NGO of people with disabilities, where we essentially visit schools to educate kids about disability issues. We visited 15 schools and 8000 students in the fall and hope to visit 25 this spring.
Where do you hope Ghana Strong Books will be in ten years time?
My hope is that Ghana Strong Books expands into a force of authors with and without disabilities who have created a more inclusive brand of literature that is loved by children and young adults around the world.
How do you feel disability rights in Ghana can be achieved?
In Ghana, the vision I am working for is simple – developing sustainable models to provide people with disabilities across southern Ghana with access to transportation, education, and financial empowerment. There are no accessible buses in Ghana. Transportation is the barrier that is geographically isolating so many people with disabilities who utilize wheelchairs, and it is what I talk about constantly because I don’t think it is what the global dialogue is focusing on.
If you can solve transportation, you can get people with disabilities to existing health care providers. After that, you need to provide basic financial empowerment to really marginalized people, so instead of earning 0 a day, they are earning 1-2 a day. While this might not sound like a huge difference, it would be enormous – because it would shift a large group of dependent people into independent lifestyles – and issues of sexual abuse, familial discrimination etc. would all go down because people would be more independent. Finally, we need to focus on education. Education gives meaning to people’s lives, gives people hope for the future, and acts as a community-building hub to provide other services to advance disability rights.
Your first novel is in part inspired by your experiences in Ghana; do you hope to achieve further awareness and advocacy through your writing?
Yes. It definitely influences my writing, but it is one of many influences. A lot of people are telling me to write a book specifically about disability in Ghana. While I would love to share the stories that I have heard, I don’t think it is really my story to tell in something as personal as a book. I am not a person with a disability from Ghana, so my hope would be that someday, a person with a disability is able to write such a book. Perhaps, I will play some role in that process – either encouraging them or co-writing or something, but I don’t plan to write that book right now. However, yes – my writing is heavily influenced by my perspectives on change-making, development, economic inequality, and disability in Ghana.
What has been the hardest part of your advocacy work?
The most powerful change-makers in Ghana are people who have left the country to pursue educational opportunities and then returned to try to enact change – in my opinion. Finding those people and convincing them to work on disability rights is difficult.
What advice would you give to someone who wants to get involved in advocacy and charity work?
Often we operate under this assumption that wanting to help actually equates to helping. My advice would be blunt, “Wanting to help or trying to help often doesn’t equate to actually helping.” If you want to do something that is going to make a difference on a systemic level, you need to spend a lot of time learning first. I personally don’t view my role on disability rights in Ghana as helping start or do anything. I merely look for people who are already doing exciting things and try to convince them of certain ideas and to try out certain things, and working together, hopefully, we will realize change. I think if we view development as something that must be locally-driven, collaborative, and sustainable, there is hope.