National AccessAbility Week is a time dedicated to promoting accessibility and inclusion across Canada. It is also an opportunity to highlight the valuable contributions of people with disabilities living in Canada. As National AccessAbility Week comes to a close, we invite you to join us in a reflection on this year’s theme, “Disability Inclusion 2021: Leaving No One Behind.” As a start, we must acknowledge the barriers to access and inclusion that people with disabilities continue to face, and the ongoing work that must be done, as a society, to ensure that truly no one is left behind.
People with disabilities are disproportionately impacted by existing inequities in policies, programs, and services in our society. This is further exacerbated by intersectionality, the notion that many identity factors (e.g. socioeconomic status (SES), ethnicity, gender identity, sexual orientation, and disability, among others) intersect, resulting in individuals experiencing a compounded system of discrimination and disadvantage. This is a reality faced by many Autistic individuals living in Canada.
Every Autistic person presents unique strengths and faces distinct barriers. Autism is commonly referred to as a spectrum of colours in the way that the disability presents itself in social situations, communications, and behaviours. These experiences can lead to barriers of their human rights, such as their rights to education, housing, and employment.
As we advocate for a National Autism Strategy (NAS) to support the diverse needs of Autistic individuals and their families, it is paramount that public dialogue, policy development and research initiatives consider the intersectionality of autism with age, gender, ethnicity, sexuality, socioeconomic status, geographic location, and Indigenous status, among other social determinants of health. It is critical for Autistic people and their families experiencing these compounding barriers to be represented in discussions surrounding a NAS.
The Canadian Autism Spectrum Disorder Alliance (CASDA) is a not-for-profit coalition of Autistic individuals, self-advocates, caregivers, community members, researchers, and representatives from leading organizations across Canada. As a national organization, we are committed to ensuring the implementation of a comprehensive NAS that addresses critical gaps in funding and policies, which are preventing Autistic individuals and their families from exercising their equal rights in Canada. Today, equal rights are not met for Autistic people and families, especially for those with intersecting identities. This is why we, as a society, must continue to advocate for the importance of a holistic and intersectional approach to autism, and focus efforts across all initiatives on improving equity, accessibility, and outcomes for Autistic people living in Canada. At CASDA, we are working towards guiding a NAS that is inclusive and representative of all Autistic individuals living in Canada, that is individualized to the person and family, and that addresses intersecting barriers and identities to mitigate the risk of further marginalization of Autistic people. As such, we commit to advocating for and with Autistic people on a policy level by garnering stakeholder input and ensuring representation of marginalized voices, including Indigenous and racialized communities, rural and Northern populations, newcomers, women, and those from the LGBTQ2SIA+ communities, among others.
What is CASDA doing to ensure equity & diversity is prioritized in our current initiatives?
With work on a NAS currently underway, CASDA remains focused on bringing attention to the intersectional barriers experienced by Autistic people living in Canada and their families.
In 2020, an internal committee at CASDA examined barriers to autism-related equity in Canada and within its own initiatives. These conversations led to furthering CASDA’s commitment to amplifying the voices of Autistic and marginalized communities. Thus, the Canadian Journal of Autism Equity (CJAE) was founded; a platform designed to highlight the perspectives of under-represented voices within the Autistic community with decision-makers and the broader community. Hosted at McMaster University Library, the first issue – Equity – was launched on April 6, 2021. The CJAE strongly encourages submissions from marginalized communities and populations within the Autistic and autism communities.
Additional initiatives that have been implemented at CASDA to address and identify social inequities include:
- The Autistic Voices Project, a testimonial video series, was prompted by the need to better understand the impacts of the COVID-19 pandemic on the employment experiences of Autistic people across the country. This project highlights the experiences of individuals on the spectrum; however, there still remains a gap in knowledge with respect to employment during COVID-19 for marginalized populations within the Autistic community. For that reason, an expansion of the Autistic Voices Project is currently underway to capture the experiences of Autistic people that identify as Indigenous, racialized, refugee/recent immigrants, francophone, living in rural and remote communities, and non-verbal, among others.
- “Across the Desk,” is a podcast series, in collaboration with Spero Careers Canada, that aims to highlight inequities in the Autistic and autism communities. In partnership with the Nishnawbe Aski Nation (NAN), some of the future podcast episodes will focus on autism in NAN First Nations communities. The latest episode featured a discussion about existing gaps in autism services with Deputy Grand Chief Walter Naveau of the Nishnawbe Aski Nation.
- The Canadian Autism Leadership Summit, which relies strongly on the perspectives of the Lived Experience Committee composed of Autistic self-advocates to ensure that the conference is Autistic-inclusive.
- The development of various policy outputs, and consulting First Nations, Métis, and Inuit peoples to highlight the pressing need for a distinct Indigenous approach to autism.
The above initiatives only scratch at the surface of the diversity within the Autistic community. Equity and diversity remain a complex subject, and CASDA is committed to learning as it is growing. With National AccessAbility Week coming to a close, we invite all members to incorporate an intersectional lens in reflections related to accessibility, recognizing that there is a wide array of needs across the autism spectrum.
Language is a powerful mechanism in shaping our understanding of the world around us and it influences how people perceive themselves and others. The words we use to talk in conversation with and about Autistic people can have a powerful impact in either advancing or undermining disablist attitudes.
We recognize there are strong arguments and passions on both sides of the debate between the use of person-first language (e.g., “person with autism”) and identity-first language (e.g., “Autistic person”) in relation to autism. However, there is a growing body of scientific and community literature documenting the dislike, amongst Autistic individuals, of person-first language and its potential for increasing stigma. Identity-first language reflects the belief that being Autistic is a core part of a person’s identity and has been embraced by the Blind and Deaf community for instance.
Based on the literature and the strong preference of the Autistic members of CASDA, we use identity-first language and more neutral terms such as “individual on the spectrum” in this statement.
Please note that these are not the only definitions for the following words:
Intersectionality is the complex, cumulative way in which the effects of multiple forms of discrimination (such as racism, sexism, and classism) combine, overlap, or intersect especially in the experiences of marginalized individuals or groups (1).
Equity is ensuring that resources are tailored to the unique and specific needs and identity factors (e.g. gender, sexuality, ethnicity, etc.) of each individual (2).
Inclusion is improving opportunities, access to resources, accommodations, and voice and respect for rights, particularly for people who are disadvantaged (3).
Diversity is about the individual. It is about the variety of unique dimensions, qualities and characteristics we all possess (4).
Accessibility is when the needs of individuals with disabilities are specifically considered, and products, services, and facilities are built or modified so that they can be used by people of all abilities (5).
- Definition of intersectionality [Internet]. Merriam-webster.com. [cited 20 May 2021]. Available from: https://www.merriam-webster.com/dictionary/intersectionality
- Equity [Internet]. Who.int. [cited 18 May 2021]. Available from: https://www.who.int/healthsystems/topics/equity/en/
- Identifying social inclusion and exclusion. Report on the World Social Situation. 2016;:17.
- CCDI – Diversity defined [Internet]. Ccdi.ca. [cited 18 May 2021]. Available from: https://ccdi.ca/our-story/diversity-defined/#:~:text=Diversity%20is%20about%20the%20individual,respects%2C%20accepts%20and%20values%20difference
- Disability and Health Inclusion Strategies [Internet]. Centers for Disease Control and Prevention. [cited 20 May 2021]. Available from: https://www.cdc.gov/ncbddd/disabilityandhealth/disability-strategies.html#:~:text=Accessibility%20Accessibility%20is%20when%20the%20needs%20of%20people,of%20accessibility%3A%20Parking%20spaces%20are%20close%20to%20entrances