The LiveWorkPlay message follows these words from the UN Secretary General.
On World Autism Awareness Day, we recognize and celebrate the rights of persons with autism. This year’s observance takes place in the midst of a public health crisis unlike any other in our lifetimes — a crisis that places persons with autism at disproportionate risk as a result of the coronavirus and its impact on society.
Persons with autism have the right to self-determination, independence and autonomy, as well as the right to education and employment on an equal basis with others. But the breakdown of vital support systems and networks as a result of COVID-19 exacerbates the obstacles that persons with autism face in exercising these rights. We must ensure that a prolonged disruption caused by the emergency does not result in rollbacks of the rights that persons with autism and their representative organizations have worked so hard to advance.
Universal human rights, including the rights of persons with disabilities, must not be infringed upon in the time of a pandemic. Governments have a responsibility to ensure that their response includes persons with autism. Persons with autism should never face discrimination when seeking medical care. They must continue to have access to the support systems required to remain in their homes and communities through times of crisis, instead of facing the prospect of forced institutionalization.
We all have a role to play in ensuring that the needs of people who are disproportionately impacted by COVID-19 are met during this difficult period. Information about precautionary measures must be provided in accessible formats. We must also recognize that when schools employ online teaching, students with non-standard ways of learning may be at a disadvantage. The same applies to the workplace and working remotely. Even in these unpredictable times, we must commit to consulting persons with disabilities and their representative organizations, and ensuring that our non-traditional ways of working, learning, and engaging with each other, as well as our global response to the coronavirus, are inclusive of and accessible to all people, including persons with autism.
The rights of persons with autism must be taken into account in the formulation of all responses to the COVID-19 virus. On World Autism Awareness Day, let us stand together, support each other and show solidarity with persons with autism.
— United Nations Secretary-General’s Message, António Guterres
April is a month filled with messages about autism and autistic people (April 2 is the official United Nations observance). All over the world different countries and different organizations will mark particular days, weeks, or months with a variety of campaigns. Although it is sometimes obvious (but often subtle), throughout the month of April and indeed throughout the year, the general public is sure to come across competing messages, using different symbols and representing sometimes conflicting approaches and perspectives.
In the simplest of terms, while many seek to promote the acceptance of autistic people as welcomed and fully valued members of society, there is other messaging that is focused on autism as a “problem to be solved” and this view is associated with some of the most popular “autism campaigns” which are often represented by symbols like “puzzle pieces coming together” or “lighting it up blue.”
LiveWorkPlay is not an arbiter of what is right or wrong on these matters, but we do have a mandate to support inclusion, and embedded in this is our belief in approaching the exclusion of people with disabilities (including autism) as a problem to be solved primarily through changes in the attitudes and practices of society at large (a social model of disability, or what Al Condeluci describes as the “macro model”). This differs from a medical model approach (“micro model”) where the focus is on the person with a difference as “the problem.”
When it comes to autism, the macro model approach is often described in terms of “neurodiversity” which is about accepting and appreciating that every human being is different, and that deciding who is “normal” is both abstract and discriminatory. Beyond this, neurodiversity helps us understand that there is tremendous value for all when those who may be seen as “different” are welcomed as contributors who can bring strengths and gifts that benefit the whole of humanity.
Our purpose with this post is to emphasize critical thinking about autism and inclusion, and in particular, to recommend that people who are unsure about these issues spend time learning about and appreciating the views of autistic people themselves (see resources below).
The voices of autistic advocates are often not incorporated into the thinking behind the approaches, concepts, or messaging of the most well-financed autism organizations behind popular public awareness campaigns. These organizations are able to purchase their way into the public discourse through marketing and advertising that is out of reach foot grassroots advocates. The larger organizations may have good intentions, but formal and informal coalitions that often self-identify as the “actually autistic” movement, are making a strong case that there are no longer any valid excuses for promoting a medical model approach to autism.*
LiveWorkPlay sees alignment in this view with respect to broader issues that impact people with intellectual disabilities and/or autistic people, and which are a part of our evidence-based daily efforts to support and advance inclusive outcomes. This includes housing, employment, and community engagement – there remains a well-funded (public and private funds) “segregated infrastructure” in our own community of Ottawa, as well as across the province of Ontario, Canada, and other parts of the world. From various forms of institutional group living, to segregated programs like sheltered workshops, to “special needs only” arts and recreation programs, exclusion is not only an attitude, it is systemically supported through structures that deliberately keep people with intellectual disabilities and/or autistic people separated from others.
We see every day the benefits of supporting people with intellectual disabilities and/or autistic people to have homes of their own, to have a real job for real pay, and to engage in regular community venues for the enjoyment of arts and recreation (this of course requires that neighbourhoods, employers, and community venues know how to be welcoming and accepting – that’s a big part of why LiveWorkPlay exists – to help develop the capacity of regular citizens and regular places to successfully include others).
So, before you buy that puzzle shirt or set up that blue floodlight, take some time to understand what these symbols and campaigns actually represent, and make sure they align with your own values and intentions about autistic people and their place in your community.
* Derek Burrow from Autistics For Autistics Ontario (A4A) was consulted with respect to the content of this blog and the graphic at the top of the page was adapted from the Autistic Self Advocacy Network