Self-advocacy and the burden of asking for help

In my previous blog I wrote about how I have been struggling to upload information for a background check and the extra effort needed to undertake this. This week I was able to go to the organisation in person and was assisted by a staff member to complete the process. She was able to phone a customer support contact and relay the information to me. I am not the best on the phone when it comes to complex verbal instructions, but this was easier than trying to resolve the issue via email by myself. It is not ideal though - why should I need to rely on another person to communicate for me? I am usually quite capable of making a captioned phone call but I think the complexity of this issue frustrated me to the point that I was either going to give up or ask someone to help.

It turned out that the photos I needed to upload had to be compressed to meet file size restrictions. Unfortunately, the system is very clunky and would time out when you upload an image that is too big. Also, the system didn't flag that the file size was a problem. A simple error message on the screen would have made it so much easier to resolve the issue! While there was a workaround, even that process would be very difficult for some people to complete. I have supplied some feedback about this issue, so hopefully this will be addressed.

Advocating for our rights is important

This experience got me thinking about systemic barriers and how we advocate for our needs. In my case, I spent probably 5-6 hours of unpaid time trying to resolve the issue, before I asked for help. Because I am technically savvy and well-educated, there is a certain amount of pride in doing things myself and a general reluctance to ask for help unless it's necessary. But this week I took the opportunity to ask for help AND make some suggestions to improve the quality of the supports put in place for me at future meetings. I found it quite awkward to advocate for my needs though, partly because I am out of practice, and partly because I don't like to 'rock the boat'. I suspect this is a common experience for people with disabilities. I know from personal experience that low self-confidence and self-esteem can impact how you perceive yourself and how you interact with other people, especially in workplaces, educational environments and other settings where you have to navigate all kinds of personality types, hierarchies and attitudes towards disability.

I put this question to some friends via social media - how does self-advocacy make you feel? I got various responses positive and negative responses about their feelings or experiences such as:

• 'People pleasing' and not wanting to draw too much attention to themselves.

• Internalised ableism - not asking for support because they don't want to be 'difficult'.

• Asking for support is a sign of a strong work ethic and initiative.

• Society needs to make adjustments so we can communicate with each other and value each other - it is about showing respect.

• Feeling confident to advocate sometimes and overwhelmed at other times.

• Fed up that 80% of the time receiving support is reliant on [the respondents] advocating efforts.

• Frustration and anger when having to self-advocate all the time.

• Annoyed when people think they know better than we do about the supports we need.

• Exhausting having to advocate, particularly for proper access and not just piecemeal access like a transcript after the event.

Some people did touch on the positive aspects of self-advocating: that people are often keen to learn more about the kinds of support available to assist the person with the disability. However, it is important to note this usually occurs after the need for access has been broached. I cannot tell you the number of times asking for live captions has been met with a blank stare. After over a decade of working in the disability access space, I have to remind myself that the vast majority of people have very little understanding of access and inclusion. It does seem to be improving though, especially with access to media online (such as captioned and audio-described movies). My friend Michael Clarkson talks about positive advocacy in this podcast (transcript available via Podbean App). He makes an important point: our advocacy should come from a positive perspective because it is more likely to result in positive outcomes than a negative approach. I wholeheartedly agree. When I advocate for access I try to make it a win-win situation for me and the other parties. Some examples I like to use when self-advocating for access and inclusion are:

• Providing live captions at public events benefits deaf people, but also people who have acquired brain injuries, audio-processing disorders, speak English as a second language and anyone who prefers visual access to dialogue.
  

• A caption transcript can be kept as a record of the event by the organiser, or converted into a caption file to make video footage accessible.
  

• An Auslan interpreter facilitates a conversation between the hearing person and the deaf person in both directions, providing access for both parties.
  

• Making a business or service accessible to more people increases patronage and profitability.

These are just a few examples, but there are many ways to advocate for your needs. Yes, it can be uncomfortable. Yes, it can be exhausting. And yes it is really annoying when you repeatedly have to educate people about your needs and why they should provide access. But we have never lived in a better time to advocate. We have legislation, funding and technology on our side. It is up to us to use these resources wisely and positively to improve outcomes for ourselves and other people with disabilities in our communities.

If you would like to learn more about advocating for your needs or providing accessible and inclusive services, please contact me.