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Something in my coffee tastes different today...

International Day of Persons with Disabilities - 3rd December 2021

Today everything tastes different, even my coffee, but nothing has changed; it’s the same glass, the same water, and the same coffee beans, but at this time of year it tastes different. I have been receiving many emails, calls, SMS, WhatsApp messages, and requests for interviews – so many that I can hardly keep up. This is the time of year that everyone shows up – everyone wants to speak to me. This is because the International Day of Persons with Disabilities (IDPD) is approaching, and it is the time of year when everyone wants to show their support. They are looking for someone who can represent disability, me being one of these people – talking to and about me as if I were some sort of celebrity. There are many people with disabilities who are experiencing the same.

What surprises me most, is that every year it is often the same people contacting me, who had disappeared for the rest of the year. Finally, this is the time when everyone remembers me. They suddenly reappear, wanting to contact me, when for the rest of the year they have consistently ignored my emails and calls. Should I be happy? I’m not sure. I have in fact decided that everywhere, both within and outside of work, I will not appear as a spokesperson for this day, anywhere. I have refused all requests for comments, opinions, and interviews.

The International Day of Persons with Disabilities, held annually on the 3rd December, is a time to evaluate what has happened during the previous year; what we have achieved and how we have worked towards improving the situation of persons with disabilities (PwD) in the world. But instead, we just celebrate with beautiful words and empty promises, when the reality is that PwD are facing even more unstable and uncertain realities, often due to conflict, displacement, and gender-based violence.

Don’t get me wrong, I’m not against having an international day, but if we have not worked towards achieving real results throughout the year, how can we celebrate it? It becomes merely symbolic. Imagine celebrating an “International Day of Freedom of Speech” in a country that can imprison you for exercising this right. It does not make sense to celebrate something that doesn’t exist and does not translate into tangible results. Nor would it make sense to celebrate a single survivor of a deadly disease, if health care were refused to the rest of the world’s population. We cannot ceremoniously recognise the situation of PwD on this one day of the year, and for the rest of the year forget all about the challenges PwD face and do nothing to achieve real change.

Social media is widely used to showcase achievements regarding PwD, but in media discourse, we still face ableism and ignorance of intersectionality in how disability issues are presented. There is often also a focus on small achievements – individual “success stories” with relatable photogenic faces – but which in reality have minimal impacts, and serve to reinforce a paternalistic relationship between PwD and those providing them with resources or assistive devices. Typically, the camera used to take the video of a story costs more than the intervention itself. I remember, for instance, a time when a wheelchair was donated to a young boy, and the event received significant media coverage. The chair wasn’t even the correct size and made of poor quality. The boy seemed completely overwhelmed by events, but his feelings were ignored in order to document the moment for the publicity it could generate. When I saw these pictures, I actually cried, I felt so ashamed of the treatment of this child.

Such gestures therefore are merely that, gestures, at the expense of the dignity and needs of PwD. We should evaluate how best to serve their needs in consultation with PwD, rather than make decisions on their behalf, based on what will provide the best photo op. This merely reinforces stereotypes of PwD as passive but grateful victims, and maintains the conception of disability work as “charity”, designed to offer benefactors “feel-good” moments, rather than to address the structures that marginalise PwD and systematically place them in a position of disadvantage. If we are serious about our intentions, a rights-based approach is required, based on the recognition of the integrity, dignity, and equal value of all human beings.

The official theme for the 2021 UN IDPD is “Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world”. This is certainly a very topical and important theme to focus on. However, the theme is the end goal, and in my opinion it is too early to celebrate, as we are far from seeing this in practice. Before we launch a new theme, how far have we gone in achieving the themes from previous years? At the end of the day, to what extent does the relevance of the theme resonate with PwD, if they don’t see their actual situations changing? In many countries, having a wheelchair, a cochlea implant, or accessible transportation are just a dream. This would not be the case if we were anywhere close to actual leadership and participation. With every economic or political crisis, disability issues are pushed even further down the agenda, while living conditions for PwD deteriorate. The Covid-19 pandemic has demonstrated just how fragile some of the systems are across societies, but especially for PwD, who in the absence of structural support are reliant on personal social networks, that have been impacted by lockdowns and loss of income.

Now is the part where I am supposed to give some recommendations for the way forward. But having worked in the forum of disability advocacy and rights for the past 20 years, I already know that everyone knows what needs doing. Rather than repeating the same recommendations that I have continuously given over the years, I am here to ask that you demonstrate what you have achieved – actions speak louder than words.

The International Day of Persons with Disabilities is one day of many. Human Rights Day for example is next week on the 10th December, and we will be hearing more inspiring stories on how far we have come in the spirit of brotherhood, protecting basic human rights of life, liberty and security, asylum and freedom of movement, work and education, as well as participation in government. There are international days of peace, health, happiness, and many more. My hope is that in the future we will not need any of these days, if we have truly achieved our goals on any of these themes.

Before I continue with my day and finish my coffee, I would like to recognise and thank those dedicated and courageous people around the world who continue to work for PwD’s rights, often in adverse circumstances. Your work may not be broadcast in the media, but you make all the difference.

Chavia Ali

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