The right to be seen and heard
A youth advocate explains why the world needs more people with disabilities at the decision-making table.
On Friday, 3 December, in Bulgaria, I, like many of my peers and allies around the world, will celebrate International Day for Persons with Disabilities, an observance promoted by the United Nations since 1992. This is a day for increasing awareness, empathy and understanding of the issues faced by more than one billion people – approximately 15 per cent of the world's population – who live with some form of disability.
As one of these billion, I attach deep meaning to this day.
Many in my community are invisible to those who make decisions about us. Often excluded from official statistics, we are more likely to be overlooked in public policies needed to improve lives and livelihoods. Without data on how many people living with disabilities remain, for example, cut off from quality health and education services, government officials and other leaders cannot design reforms to address these disparities – disparities, by the way, that only compound the discrimination and rights violations our community already confronts.
Just this month, though, the data gap narrowed: The largest compilation of statistics on children with disabilities to date was published by UNICEF, using internationally comparable data from 42 countries and areas, and covering over 60 indicators of child well-being – from nutrition and health, to access to clean water, protection from violence, and education.
This report is a huge leap towards assessing the extent to which young people like me are included in development efforts. But numbers don’t tell the whole story. We may come to understand the proportion of children with disabilities who, for example, are malnourished, but we won’t come to understand why. For that, we must hear more voices from my community – listen to our experiences, and heed our accounts of how to make real, lived change.
That’s why this 3 December – and this year’s theme, "Leadership and participation of persons with disabilities towards an inclusive, accessible and sustainable post-COVID-19 world” – are of great importance.
As the COVID-19 pandemic continues to amplify the inequities between young people who live with disabilities and those who don’t, it is increasingly important for the disabled community to have a seat at the decision-making table. Counting us is not enough: It is up to governments, stakeholders, and all other relevant organizations to create opportunities for our voices to be heard.
We are the best writers of our own stories. Only by promoting the active engagement of people with disabilities in all democratic processes, can we move towards a more inclusive world.
Inclusive policies are crucial not only to meet the most basic needs of our community, but also to create an environment of belonging. It is tough to overstate the feelings of isolation that come with an inaccessible environment that discourages social interaction with peers, and the damage that can wreak on one's mental health.
As someone who has worked as a UNICEF Youth Advocate for Inclusive Education in Bulgaria, a global U-Report Champion, and a member of the first-ever Youth Sounding Board (launched by the European Commission’s Directorate-General for International Partnerships), I can attest to the power that good leadership and participation have in creating a more accessible, inclusive and sustainable world.
Good leadership is two-directional – it can be showcased by both activists and people in office.
First, disability advocates carry a certain level of responsibility in representing a widely diverse group of individuals accurately and authentically, each with different conditions, impairments and needs. It is no easy task: People like me can only draw from personal experience and, at times, our professional capacity, if we have chosen to further explore disability rights. Nevertheless, I believe those lucky few who have carved out a platform to speak and who are actively working towards a better tomorrow, should make a conscious effort to help others do the same. This way, we can be a shining example of what it means to be an inclusive leader.
Second, governments too have an immense level of responsibility. Public officials can be drivers of change through comprehensive legislative reform to help create a world where:
- Children feel safe in their home environment and have access to resources – including, but not limited to, inclusive education, a priority outlined in the Convention on the Rights of Persons with Disabilities – that help them reach their full potential.
- All teenagers with disabilities, especially young girls, have access to adequate education and information on reproductive health.
- All adults with disabilities have accessible living and working conditions.
- Village, town and city infrastructures are accessible and enable people with disabilities to enjoy socio-cultural activities.
- Adequate support is provided to caregivers of children with disabilities.
- People with disabilities are consulted in the policymaking process.
Only by promoting the active engagement of people with disabilities in all democratic processes, can we move towards a more inclusive world. We are the best writers of our own stories; we can use our lived experiences to provide long-term solutions to issues affecting our community.
All of this can be achieved if and only when societal perceptions towards those with disabilities are shifted, opening a space for us to make our voices heard through continuous dialogue with relevant stakeholders. One effective approach is consulting with organizations of persons with disabilities, which have first-hand experience working with and alongside our community.
It is up to us and all relevant parties to create an accommodating and participatory environment where no one gets left behind. As our international motto says, “Nothing about us without us.”
My final message: No matter how painful my struggle, I always approach it with a big and bright smile – if not to help myself, then to help others!
Maria Alexandrova, 20 years old, is a Youth Disability Advocate based in Bulgaria.