Hi, my name is Ellen. I am a lot of things: baker, gamer, lawyer and advocate, wife, proud aunt, and ‘profoundly disabled.’ The last one on that list is unfortunately the one that many people tend to use to define me.
I was diagnosed with Muscular Dystrophy (MD) when I was 13. MD is a degenerative neuro muscular disease which, over time, reduces muscle function throughout the body. This meant that I developed into a very active 13 year old, then after that, all my muscles slowly stopped working. This gradual deterioration meant that as I would start losing physical functionality, I would gain assistive technology to fill the functionality gap. Meaning that I use an impressive list of assistive technology. The list includes: an electric wheelchair, breathing machine, computer switches and a swag of automated technology. But it is not just fancy adaptive technology that bridges that functionality gap. Often simple ‘life hacks’ do the trick. Like using my mobile phone to take notes that I email to myself, instead of using a pen and paper. Many of these ‘hacks’ are either trial and error or shared within my disabled networks. We disabled folks are generally an adaptive and innovate bunch — we have to be right?
Adaptive technology does not always go to plan. I have had a few epic disasters, like when I tried to use an exceptionally expensive voice recognition software instead of typing. Apparently, my Darth Vader vibes were quite upsetting because it could not recognise my voice over my breathing machine. This is when good quality built-in accessibility technology is so important. My Occupational Therapist (OT) and I fired up Word to try dictate. Success! It was able to filter out the machine noise and recognise my voice. I mean it is not perfect — except when you swear at it — but we had another tool in the functionality toolkit. Which is the point of technology.
‘We often use technology to access life — to be included like everyone else. That means when equipment, software and webpages are not accessible we can be excluded or be forced to find our own work around — just to get in the metaphorical door.’
I recently read the quote: 'Technology is a gateway to information, services, social connection and employment.' in an article. This rings so true for me and many people I know with disability. We often use technology to access life — to be included like everyone else. That means when equipment, software and webpages are not accessible we can be excluded or be forced to find our own work around — just to get in the metaphorical door.
For many years I have been a disability advocate while working in the disability services sector. I was privileged to hear many people’s stories and experiences as part of my local council’s access and inclusion reference group. However, it has been my greatest privilege was to work as a health lawyer and advocate for people in the AAT NDIS review process. From these experiences, and my own, I saw the same frustrating issues repeated. The impact on people’s lives can be dramatic. One of the smartest women I know — 98 ATAR advanced science smart — did not see the point of even trying to go to university, because 'who would employ her anyway.' Please do not judge her. She is right. She is profoundly disabled and her deep love for medical research and intellect are not enough. It is a tough battle to get people to open the employment door for you. Low expectations, inaccessible design and deficit dogma follow disabled people through life.
Environments, technology, services and, frankly, life is rarely accessible or simple. That is why I am excited to work with Accessibility NSW. To work in the technology space and help improve the way NSW Government delivers digital services.
Many times, people with disability have to fight to educate others for inclusion. Inclusion statistics are frankly terrible; for instance, working-age people with disability have a lower employment rate (48%) than those without disabilities (80%). Additionally, people with disabilities experience online hate speech at higher rates (19%) than the national average (14%). I would love to see a change in these alarming statistics for people with disability, but that is easier said than done. Accessibility can be so hard. Often the answer to the undoubtably complicated issue of accessibility is to just ask people.
Some extra advice in the accessibility space:
- Throw away low expectations — now! People with disability are using your digital services, working with you (or want to!), and they are valuable, intelligent humans. Let us contribute in our way.
- Education. Learn about accessibility and include a range of people. How? Just ask people! Consult with people with lived experience. Lots of them, frequently and a with a wide range of abilities. Do not assume that Easy Read is just for intellectual disability. Test that product or service on a range of people. You will get a much better result.
- Just try to be accessible in everything you can — it really can change both the parameters and level of participation of people’s lives.