Disability advocacy: the power of lived experiences

There still remains a continued need to better understand the struggles of those with disabilities, and to build inclusive societies that dignify their experiences. On Dec. 3, the UN’s annual International Day of Persons with Disabilities (IDPD) returns with the theme of sustainable development.

Jake Anthony.

“You can learn a lot about what other people need by listening to one person’s story,” says Jake Anthony, a local disability rights advocate. “Don’t just listen to the louder ones like myself – every person with a disability is a great resource of knowledge.”

For Anthony, honouring everyone’s lived experiences has indeed been the foundation to his championing for more accessible communities – a career that has now spanned over 15 years.

By valuing storytelling, including his own experience living with autism, Anthony’s cross-disability advocacy involves making the physical and informational structures of institutions more accessible, a commitment that aligns with the UN call to consider persons with disabilities within its 17 sustainable development goals (SDGs).

Moving forward together

Amongst the UN’s SDGs are commitments to promoting transparent institutions, fostering sustainable innovations, and ensuring equitable education. The latter of which is deeply personal to Anthony, whose mother’s advocacy years ago led to him receiving one of the first individualized educational plans in British Columbia.

“I really saw the work that my mother and other people did to make my life better, and to improve the lives of so many people with disabilities,” says Anthony. “I saw that this is an area where I can make a difference, moving forward to creating a more inclusive, equitable, and diverse society.”

Inspired by his mother, Anthony has worked with various non-profit organizations, including BC Council for Families, Kickstart Disability Arts and Culture, and Disability Alliance BC. He has also served on advisory committees for TransLink and the City of Burnaby. For Anthony, advocacy involves being vulnerable enough to share one’s own experience and having courage to speak out against injustices.

“Using your voice, and your lived experience, as a person with a disability is something that is invaluable,” says Anthony. “You have an understanding [and] willingness to learn about other people’s experiences, and be a champion for others.”

Guided by the popular disability community saying, “nothing about us, without us,” Anthony’s work emphasizes the need to consult persons with disabilities in urban planning and policy design. As governments create new policies, that may bring further challenges to persons with disabilities – such as the banning of plastic straws (to adapt to environmental concerns) – such consultations are even more important nowadays.

“I think it’s important, whether it’s government or other agencies, to have more of a connection with the disability community; and figure out how these policies will affect us, and other equity seeking groups,” says Anthony.

When it comes to identifying accessibility barriers within a building, Anthony advises that both visible and invisible disabilities must be considered. An example of a building that failed to meet these requirements is Burnaby’s C.G. Brown Memorial Pool.

“The wheelchair lifts, to get people into the pools, were really not working properly; the pool deck wasn’t wide enough, if they were wheelchair users or needed a bit of extra space,” says Anthony. “A lot of people that are neurodivergent sometimes need more space to be away from people, to not be overloaded.”

Getting rid of insiders’ secrets

For Anthony, accessibility means creating spaces that are welcoming and enjoyable to everyone – a value that is currently still missing from some government services. Throughout his advocacy work, Anthony has observed how being able to access and navigate social services, such as income assistance, remains a key issue for persons with disabilities.

“That’s a big thing – having the resources and tools available for people to move forward, understand the system at least enough to access the services they need,” says Anthony.

According to Anthony, red tape combined with the lack of user-friendly resources on how to navigate these services currently leaves persons with disabilities reliant on those who are already well-versed in the system. While Anthony’s mother, who worked for the government, was able to teach him about the system, the bureaucracy involved with accessing social services leaves many frustrated.

“Sometimes people get so fed up, they get to the point where they just give up, and they don’t get the support they need,” adds Anthony.

According to Anthony, another accessibility issue lies in the stringent criteria used to determine whether someone is eligible for disability assistance, a process that fails to account for some individuals’ needs. In addition, Anthony also notes that gaps in sensitivity training for government workers further leave applicants vulnerable.

“If you don’t check every single box, then they’ll say you don’t qualify – even if you’re not able to work because of your disability, and you have no other way of getting income,” says Anthony.

For Anthony, these concerns have become even more pressing as the Canada Disability Benefit, a new federal program, is expected to be rolled out next year, leaving many concerned that it will be just as difficult to navigate as provincial services. To break down these barriers, Anthony would like to see more sensitivity training for workers assisting persons with disabilities, creation of easily accessible tools making these processes transparent, and formation of advisory groups reflecting the diversity of lived experiences.

“More people with disabilities need to be hired into government. To not only advise but work with people with disabilities, and the frontline workers that are working one-on-one with clients,” says Anthony.