Eric Sande is an advocate for youth with disabilities and a member of the Youth with Disabilities Caucus for the African region, convened by the International Disability Alliance (IDA). He also serves as a Bridge CRPD-SDGs Fellow at IDA and is the Founder of the “Listen to Us” initiative, which promotes the inclusion of persons who stammer in society.

He holds a Bachelor’s Degree in Political Science and Public Administration and is currently pursuing a Master’s Degree in Public Administration at the University of Nairobi.

Sande’s areas of interest include democracy, good governance, and disability inclusion. In this interview, he discusses his passion and work related to stuttering in Kenya, reflecting on what it means to him and why this conversation is crucial.

Your passion for leadership, particularly in politics and governance, is evident. What drives this passion for you?

To me, leadership is a powerful avenue for addressing both deliberate and inadvertent wrongs, challenges, and barriers within society. Value-driven leadership fosters an inclusive environment where discrimination and unfair treatment in employment opportunities are eliminated. Governance serves as a mechanism to ensure that both current and future generations, regardless of disability, can access equal opportunities across all areas of life. Persons who stammer have frequently been marginalized in political and governance matters due to their speech impediment. As a disability advocate, I view this exclusion as a form of discrimination based on a specific category of disability. It is essential to remember that some of history’s greatest leaders, such as Moses from the Bible, also had speech impairments. True inclusion will be achieved through the active and equitable participation of individuals with disabilities in these important platforms.

How did you get into this field?

My leadership journey has been significantly shaped through various platforms, including the International Disability Alliance (IDA), Konrad Adenauer Stiftung (KAS), Stammering Association of Kenya (SAK), and Emerging Leaders Foundation (ELF). Sharing my experience with stammering during a leadership development session at the Emerging Leaders Foundation marked a pivotal moment in my leadership path. It highlighted how my story resonated with many others in the stammering community who have not had the chance to advocate for change.

Joining SAK provided insight into the challenges faced by the stammering community, including coerced introversion, stigma, discrimination, unemployment, stagnation in the workplace, high disability-related costs, and depression. As a CRPD-SDGs Fellow at the International Disability Alliance (IDA), I learned that political and governance spaces offer a valuable opportunity to raise awareness about the issues affecting the disability movement and to work towards effective solutions.

How do you plan to drive change in disability rights and raise awareness?

As a change-maker, and a disability advocate championing for stuttering rights, I am committed to advance disability inclusion in all aspects of life in the society. Getting involved at National and Global High Level political forums and monitoring the implementation of the Convention on the Rights of Persons with Disabilities (CRPD) constitute important steps for disability mainstreaming and equalization of opportunities for persons with disability. Capacity building for organizations of persons with disabilities is vital. Organizations for persons with stammer operate in isolation hence making it difficult for effective awareness creation and pushing for stuttering rights. I wish to create a network of stuttering organizations both at national, regional and continental level. This will play a huge role in ensuring stammering is mainstreamed across all societal institutions.

Why is it a challenge getting to Persons with Stammer (PWS) in the community?

Even today, stammering is often regarded with stigma, and individuals who stammer can face ridicule. Such reactions can make people who stammer feel unwanted, unappreciated, and defeated, despite these feelings being unfounded. This stigma creates significant challenges for integrating with those who do not stammer, fostering an environment of isolation. Unfortunately, this sense of isolation extends to organizations representing people who stammer, which may prefer to operate separately from broader disability movements and mainstream organizations.

Through your advocacy, how is the reception of persons with stammer in the community/society?

Through my advocacy, and especially after undergoing Bridge CRPD-SDGs training by International Disability Alliance (IDA); we’ve made tremendous strides towards awareness creation and advancing for disability rights and inclusion, specifically stuttering rights in the country. At a local level, we managed to organize for the International Stammering Awareness Day (ISAD) 2021 at Alupe University College in Busia County. We achieved this by partnering with the National Council for Persons with Disabilities (NCPWD), Busia local mainstreamed Civil Society Organizations (CSOs) and Community Based Organizations (CBOs). It was evident that members of the public have often misunderstood the stammering community. Interestingly, persons with stammer themselves, even though aware of the challenges facing them, had no idea how they could address these challenges.

Why do you think it’s important to have conversations on stammering and awareness creation?

Conversations about stammering are essential for fostering a supportive and inclusive environment for people who stammer (PWS). There remains a significant knowledge gap surrounding stammering, leaving many, including PWS themselves, uncertain about how to overcome the associated barriers. Addressing this gap through open dialogue is a crucial step toward creating understanding and facilitating effective solutions. Creating awareness about stammering is crucial. Both disability advocacy groups and mainstream organizations must understand the challenges and barriers faced by individuals who stammer in order to develop, commit to, and advance effective action plans. The primary outcomes of awareness efforts are twofold: first, to inform the public about the obstacles encountered by people who stammer, and second, to propose potential solutions to address these issues.

How can we push for greater representation in the media, especially since there seems to be little knowledge about stammering?

Stammering just like all the other categories of disability should be mainstreamed, because the truth is this area has been sidelined for so long. The Fourth Estate plays a very critical role in both informing and educating the public on pertinent issues affecting the society. It mirrors what happens in society; therefore, to bring about significant change and promote disability inclusion, PWS and persons with disability should be wholly represented in the mainstream media. And this agenda is the responsibility of both PWS and their representative organizations/bodies to be at the frontline of creating awareness and petitioning the media houses to act on disability inclusion, and this way, it can be picked up by society and advance greatly.

What are the actionable changes that you’d like to see in your community, translated to the rest of the Country?

I would like to see a community that is inclusive and accommodative of all persons with disabilities including PWS in pertinent issues like politics, governance etc. Organizations of PWS should engage the government and employment agencies in order to address the challenge of accessing employment opportunities starting with the recruitment and interview process; which has always been a challenge to PWS. Inclusive education should also be a priority.

There is a need for the disability movement and the education stakeholders both in the public and private sector to have a conversation about implementation of inclusive education pursuant to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Full and effective participation of persons with disabilities including PWS in political, governance, and public life is also another crucial area that needs to be scrutinized. Affirmative action measures need to be put in place in order to encourage persons with stammer to contribute and get involved in pertinent issues affecting the community.

As a leader, how do you champion inclusivity on disability rights?

As a change maker, disability advocate, and a leader in my community;I advocate for disability rights and more specifically stuttering rights. I have organized activities in my community such as the International Stammering Awareness Day, and United Nations Day of Persons With Disabilities aimed at raising awareness about disability rights and the need to promote equalization of opportunities for all in the society. As an organization of persons with disabilities (OPDs), we’ve petitioned both government and non-governmental organizations to continue observing the rights of persons with disabilities as enshrined in the Convection on the Rights of Persons with Disabilities (CRPD). I am also committed to observing and monitoring the societal institutions that intentionally and, or unintentionally ignore the rights of persons with disabilities while offering their services to the public. For instance, a certain show on our local radio station made nasty remarks that frankly came out as offensive with no regard for PWS. As the Stammering Association of Kenya, we came out strongly to condemn this act.

Financing your initiative has been a challenge, how have you risen above it and what are the lessons learnt?

We’re still experiencing financial constraints in regards to our work. However, being actively involved has opened up partnership opportunities with other organizations working around the same thematic areas as ours. We’ve also learnt to prudently use whatever is available to achieve our goals.

How do you view partnerships?

Partnership is very important. As SDG goal no:17 partnerships for goals brings together organizations working around the same focus areas. This creates a synergy that gives impetus towards achieving the organizations broader objectives within a limited timeframe. I encourage organizations of persons with disabilities to pull together in unison and maximize their resources in order to achieve an ALL inclusive World.

What does ISAD mean to you?

International Stammering Awareness Day (ISAD) is very important not only for me, but for the entire stammering community across the globe. It’s a constant reminder that those who came before us fought for our rights and it’s therefore our generational duty to ensure we advance for a more accommodative and inclusive world for the next stammering generations, because it will always be there, so how do we provide a better future for PWS?

What would you like to see more of on this specific day, as well as the rest of the year in relation to stammering?

I would like to see unity of purpose by both PWS and their organizations in ensuring that a barrier free society for the stammering community is achieved.

We spoke about how you have embraced your stammer, but acceptance varies individually. What has your journey been like? And are there times that you struggle with it?

Embracing my stammer was a long struggle. It took me about 20 years to finally come to terms with my stammer. Truly, acceptance is entirely dependent on the individual. It’s a journey of self- discovery and triggers specific to a PWS. I count myself lucky that today I can tell my story. Looking back, I was really yearning for a day like this, when I could have the courage to tell the world my story. Sitting in a room full of PWS narrating their life ordeals occasioned by their stammer has humbled me very much. I realized my story and journey is similar to theirs in one way or another. Ranging from childhood when peers could sarcastically laugh at how I made unpleasant sounds when speaking, to adulthood when often I retreated to my own cocoon after being embarrassed when speaking to a beautiful lady or to a bus conductor. To date, as I pen down this story, I still experience low moments when I couldn’t properly articulate my contributions in a workshop, or I got stuck when pitching an idea to a well-wisher. Words get stuck in my mind and it’s like world war three between my mind and mouth. How I handle all this really is by God’s grace. I have become emotionally aware of myself and it doesn’t really worry me so much about how I speak. My advice to my younger self is simply don’t be too hard on yourself. We’re very diverse, and having a stammer is but only a small part of the iceberg. Beneath the iceberg is a collection of many ingredients making you special and with a purpose.