Why I’m using my new global United Nations role to promote neurodiversity and the importance of equality

Tania's note: At SNJ, we want to pass on our huge congratulations to Siena for being selected for this incredible, exciting, global United Nations opportunity. Siena is an amazing young woman and this is very much deserved. We look forward to hearing more the course of her appointment.

As an autistic teenager, being selected out of over 7,000 international applicants to be a United Nations Young Leader for the Sustainable Development Goals is a tremendous personal achievement. 

When I first learned about the Young Leaders for the SDGs initiative, I decided to apply on a whim. We were into lockdown and given the state of the world, the decision didn’t feel so overreachingly ambitious. Yet, when my two references were approached to write a letter, I suddenly felt foolish and bad for asking them to spend their valuable time supporting me in a venture that was certain to end in failure. I immediately contacted them to tell them that I had changed my mind and no longer needed them to write the letter. It is in these moments of self-doubt that it is instrumental to have someone who believes in you. Tania, a mentor and a role model, was unswayed by my explanation and convinced me that I should apply. Against all the odds, I am now one of 17 Young Leaders for the SDGs from around the world, which goes to show the importance of never selling yourself short. 

Disabled by society, not by our conditions

Being selected to be a United Nations Young Leader for the SDGs is also momentous, in that it represents a move towards giving autistic people the autonomy and power to advocate and speak for themselves. Although it is important to have non-autistic allies, it is even more important to give us a seat at the table; to let us have a voice and to listen to what we have to say. 

Sadly, there are still many societal prejudices and barriers holding us back from achieving disability inclusion and equality. It is time that society adopts the social model of disability; a world view that acknowledges that what makes someone ‘disabled’ is not their medical condition, but the prejudicial attitudes and barriers imposed by our society. The social model separates impairment from disability and by doing so opens up a world of possibilities.

Whereas an "impairment" is a characteristic or long-term trait resulting from an injury, disease or condition, "disability" is the attitudinal or physical barriers that make life harder for disabled people. It is critical to separate the two so that our impairments are not used as an excuse to deny us our autonomy. The social model aims to remove the attitudinal and physical barriers that prevent disabled people from being independent and having control over how we live, work and access services.

The medical model of disability must be consigned to history

Unfortunately, the vast majority of society still views disability from a medical perspective.

The medical model views impairment as a reason to exclude, ignore and infantilise disabled people. Since the medical model dominates, most societal, political and organisational decision-making is influenced by the belief that disabled people lack the ability to advocate or speak for themselves. It is this dominate world view that is holding back disability inclusion and equality.

I am bombarded with the hindering medical view of disability on a daily basis. At a recent awards dinner by an organisation that aims to help the educational sector meet the needs of their students with special educational needs, I was confronted with the medical model. I, along with four other candidates, had been shortlisted for an award that highlighted the accomplishments of disabled youth.

As I read the brochure featuring a short biography of each of the candidates, I couldn’t help but notice that one of the candidates was not disabled. But what especially stood out was that her biography highlighted her experience of having a disabled brother and how this motivated her to become “the voice” for disabled youth. Call me cynical, but I immediately knew that she would win.

You see, society likes to glorify disability advocacy by non-disabled individuals over recognising the advocacy and voices of the actual disabled community. People who support and provide services for us are immediately seen as altruistic and selfless; something to be rewarded and celebrated. Whereas, disabled individuals advocating for themselves and their larger community are often overlooked, dismissed and unseen. The fact that an award intended to recognise the accomplishments of disabled youth was given to someone who is not disabled but speaks on behalf of the disabled community, sent a strong message to the short-listed candidates who were disabled. 

It served to remind us that our voices and contributions and lived experiences carry less weight and value. We were in effect told that we were second class citizens at an event that was supposed to empower and recognise the achievements of the disabled community. This is a message and sentiment that I hear daily.

The chance to be a positive role model for neurodivergent children

When I was growing up there were no prominent autistic role models, other than Dr Temple Grandin. On the contrary, I grew up with the societal message that autism is a tragedy and a burden; something to hide and be ashamed of. I was told that it is a disease that needs to be cured. I was told that my life was not worth living and that I would never accomplish anything.

Being given a global platform on which to send a different message; a message of hope and empowerment will mean that I can begin to change the way that society views autistic people and the disabled community at large. If there is one message I can convey to everyone out there it is that you can make a huge difference in our lives by recognising, supporting and harnessing the overlooked strengths and talents of people who think differently and perceive the world differently.

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Siena Castellon
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