Nothing about us, without us.

The phrase "Nothing about us without us" (NAUWU) gained prominence in the 1980s as disability rights movement began to gain momentum and assert the rights of disabled individuals. It resonated with the broader social justice movements that advocated for marginalized communities to have control over their own destinies and be actively involved in decision-making processes.

NAUWU represents a powerful demand for inclusivity, equal participation, and the recognition of disabled individuals as the experts of their own lives. It encapsulates the ongoing struggle for disability rights and the importance of centering the voices and experiences of disabled people in all matters that concern them.

NAUWU  is grounded in the principle of self-advocacy and the belief that the disabled should have a voice and agency in shaping policies, laws, and programs that directly impact them. It emphasizes the importance of including the perspectives and experiences of disabled individuals in all aspects of disability-related discussions, rather than making decisions on their behalf without their input or representation.

Origins of the phrase NAUWU: 

My friend and fellow autistic Rebecca Eli-Long states "I've been told that it entered US disability rights spaces via South African activists. At least that's what's reported in James Charlton's book, Nothing About Us Without US"

While it is challenging to attribute the phrase to a specific individual, it has been embraced and popularized by disability rights activists, organizations, and scholars worldwide. 

The slogan has become a rallying cry for disability rights advocates, reinforcing the core principle of empowerment, self-determination, and the right to be heard and respected.

One notable event associated with the early use of the phrase is the International Year of Disabled Persons, which was proclaimed by the United Nations in 1981. This declaration helped to bring global attention to disability rights and led to increased advocacy efforts by disabled individuals and organizations.

Context of Autism Research 

Recent years have seen some movement in discussion groups led by university and private research labs to hear inputs from all stakeholders, which includes autistics, family members, professionals (therapists, medical professionals, caretakers etc), with a long term view that such participatory research will lead to meaningful research and meaningful solutions. 

The good part is that finally there is some acknowledgement of the principle of NAUWU. 

Good beginning, but only the beginning. Let's not celebrate just yet. There are still miles to go. 

Why? Because the idea of "Nothing About Us Without Us" is 40 years old (in the 1980s) and it has taken all the way till the 2020's to see movement towards even acknowledging our voices.

Is it going to take another 40 years to see the next step of our voices translating into research and actual translatable solutions on the ground (instead of sitting as academic theory).

And will those solutions address everyone's needs or continue to focus on a narrow band of autistics, which means the rest of us continue to slip through those cracks and get left behind. 

What is the timeline? Is it even going to happen in my life time? 

 

Honestly in the the 2.5 decades I've been around, I have not seen much in terms of translatable autism solutions. We are still being peddled therapies and theories that work for a narrow band, but applied to all.

After all, there is a  ton of profits, fame and power for select groups in the autism space, so there is competition to becoming the loudest voice and the sole authoritative voice in the autism space, even if it means demeaning others. 

The irony being no one is an autism expert, as no one knows still enough about autism to be an expert. 

There is the occasional token nod to NAUWU to brush that argument out of the way. 

The result is not just the lack of solutions but continued exclusion and a poor quality of life and access to opportunities for the remaining autistics. To the add to the confusion, the autism community seems to be divided into  polarized camps and folks like me who desperately need translatable solutions are not getting them.