It’s hard to believe that the United Nations Convention on the Rights of Persons with Disabilities was only adopted 14 years ago in 2006. It became effective in 2008. In 2020, not a single country abides to it in its entirety. Only individual articles are sometimes put into action, depending how much or little money can be used to do so.
The United Nations also launched the annual World Autism Awareness Day in 2008. This day was supposed to highlight autism and the added barriers that restrict our participation in daily social activities and daily life in general.
What has happened since?
Care homes for autistics are now called “special forms of living”. Instead of “disabilities” it is now common to say “otherwise gifted” and “special challenges”. Those linguistic changes might give abled people the feeling of having achieved something, but in the end euphemisms aren’t the same as including people. This is not an achievement. This is simply not enough for people with disabilities.
My wish: Let’s fight!
In many ways, the World Autism Awareness Day should be what Women’s Day already is: A day highlighting the cold, hard and honest facts. In our case it’s not about the gender pay gap but missing professional integration and the exploitation of disabled people in disabled sweat shops. Especially since these shops violate the UN Convention – but are still expanding.
We have to talk about care in homes and cut-off living communities that prove to be the opposite of inclusive. Places like these make parallel societies possible that cause dependencies and foster violence. On this day it’s important to highlight how much autistic people and parents of autistic people have to fight each and every day. A fight for participation, for acceptance and for help. A fight to be heard and be understood. We should be aware of the fact that many people with autism don’t dare talk about their autism. They mask their autism day after day out of fear of being viewed as deficient by their employers following an outing. We should be a lot louder to make sure everyone sees it’s not a level playing field yet.
As much as women are tired of flowers on Women’s Day instead of equal rights, we don’t want blue-lit buildings. We want equal rights and chances and allies among abled people, fighting with and for us. We want changes to happen.
Back down to earth
In Reality, every ear on April 2., parent representations send out newsletters, asking for donations but no one thinks of inviting autistic people into executive boards or panels.
It’s a day when media outlets publish numerous articles highlighting deficiencies, articles that speak about autistic people, instead of letting autistics speak for themselves. They write stories about people “suffering” from autism, about people living in their “own worlds”, that either are geniuses without any friends or non-vocal children requiring care. Of course cases matching these descriptions exist on a spectrum as large as that of autism, but between these specific facettes lie thousands of people with different personalities and gifts. People that are happy, have worries, like to laugh or are more thoughtful. Those that have regular jobs, work part-time or will never work at all. People that don’t want to be put into a stereotypical box.
Companies and public institutions love to give each other a pat on the back because they lit their buildings blue, despite the fact that for years now, autistic people have made it clear that they do not want that. The “Light It Up Blue” campaign originates with Autism Speaks, an American parent representation that fixates on the “tragedy model” that paints autism in the worst kind of light and sees it as something that destroys families and existences. Large amount of money is invested in finding the cause of autism and to support parents that have killed their autistic children. Attempts to establish talks and a fair collaboration with autistic people have all failed, which is just one reason autistic people oppose this organisation and everything it represents.
Recommendations for action
We should try to turn World Autism Awareness Day into a day that raises awareness for the fact that we still have to fight for inclusion all year round. A day on which we reflect and realize how far we have come and how far we still have to go. We should actively ask autistic people and parents of autistic children what they want and what they need to achieve participation. We should use all resources to achieve just that. It may be uncomfortable, but it’s the only option. But first, of course, we should see this day as an opportunity to let the people speak that are affected: autistic people all around the world.