Up Close and Personal

Photo of author
Written By Monica Seeber

In the final blog of the Accessibility Is Everywhere series, The Copy Collective contributor Monica Seeber gets up close and personal. She uncovers the reality of living with a disability and the part we can all play in improving accessibility for everyone.

When I left high school, I enrolled in a Bachelor of Music program, specialising in percussion. During high school, my most supportive teacher had been my percussion tutor, and I wanted to follow in their footsteps and corrupt teenagers by teaching them how to hit things…

But when it came time for my mid-year performance exam, I had no feeling in my left arm from the elbow down, and no strength in my hand to grip. Needless to say, I failed the exam.

I visited an occupational therapist who suggested I had the early stages of carpal tunnel in my left wrist and that it was unlikely to improve without significant rest. I was unable to play music for a month.

At the end of that year, I made the difficult decision to transfer from the music degree to a Bachelor of Arts. I was forced to re-evaluate my future and choose a new vocation.

That was a long time ago, but I still experience pain, numbness and weakness in my arm. Sometimes all it takes is a poor night’s sleep, and I have to rest my whole arm.

It wasn’t until I was writing this blog that it even occurred to me that I was living with a disability.

Living with a disability

Australian Institute of Health and Welfare uses “disability” to broadly cover:

  • impairments – problems in body function or structure
  • activity limitations – difficulties in executing activities
  • participation restrictions – problems an individual may experience in involvement in life situations.

The Australian Human Rights Commission uses an even broader understanding of disability that includes temporary disabilities such as a broken arm or episodic depression.

For the purpose of this blog, I’m going to use “disability” in its truest sense: the negation, lack of, or deprivation of (an) ability.

I have a close family member who is blind. They have a guide dog and use various assistive technologies throughout their day. When I was 15, I stayed with them in Sydney, and we planned an outing to the CBD to “visit the sights”.

Throughout the day, whenever we spoke to people (to ask for directions, or purchase a ticket) they largely ignored my guide, and directed their comments to me instead. This person is highly intelligent and very accomplished, yet they were treated as a bit dim – even non-existent – simply because they needed assistance navigating the visual world.

For two years, I worked for a charity that supports people with autism and their families. Most of the programs were for children on the Autism spectrum and focussed on teaching social skills, emotional regulation, and sensory integration.

It is not widely known that the vast majority of autistic people have a sensory processing disorder.

Imagine trying to tune an analogue radio when there is a lot of static. Or talking on a mobile phone when you pass through a tunnel. Or going to the cinema where the image is so bright it hurts your eyes.

Now imagine all that sensory interference is part of your experience of the world every day.

The static on the radio? That’s your brain struggling to filter external information. Loss of signal on the phone? That’s your aural processing struggling with the environment. Going to the cinema and the picture is too bright? That’s you visual processing system struggling to adjust to changing light conditions.

These are all examples of an individual’s sensory processing working “abnormally”. It’s not a physical disorder like vision or hearing impairment, rather a neurological condition “that exists when sensory signals don’t get organized into appropriate responses” 

Images of resources used with children who have a sensory processing disorder, including fidget toys, weighted clothing, and a wiggle cushion.
Sensory kits (top left) are often used with children who require extra sensory imput to remain calm and focused. They can be complimented with weighted clothing (bottom left) and/or wiggle cushions (right).

I’ve spent a lot of time with children who have a sensory processing disorder. Children who can’t focus in the classroom because the noise from other children (even in other rooms) overwhelms their processing and they can’t hear the teacher. Children who run away from class to a dark corner somewhere – not because they are naughty, but because they are so visually exhausted they were about to cry. Children who run laps around supermarket aisles because they are physically unable to remain still: their proprioceptive feedback (the sensation of moving muscles and joints) is so dulled they live in a perpetual state of numbness except for when they’re running around.

The constant battle

A close friend of mine has executive functioning deficiency. We use our executive functioning processes all day, every day. Making plans, keeping track of time, multitasking, and following (and joining in) group discussions are all examples of executive functioning. Those who have a deficiency in this area may seem disruptive, “scatterbrained”, or “stupid” to those who don’t know any better.

If you’ve ever had a late night followed by a grueling day at work or school, and felt so worn out that you can’t remember your own name – that’s your executive functioning not functioning. Except while you can recover with a good night’s sleep, those with an executive functioning deficiency experience that all day, every day.

Image of a printed list that breaks down a task at a print shop into 14 smaller steps.
Example of a schedule for those with
executive functioning difficulties.

My friend was often chastised at school for not following instructions. It wasn’t because they were disobedient, rather the teacher gave multiple instructions, and they couldn’t remember all of the individual steps. What they needed was shorter instructions with fewer steps – preferably written down so they could refer to the list to make sure they’d completed everything.

Experiences like these are like sleeping on a lumpy bed. It can wear you down slowly, a little each day, because you have to work harder at the little things that everybody else seems to do with no effort at all.

And all of them are easily avoided with small changes to how we conduct ourselves personally and how we work with others in a school or office environment.

All too easy to discriminate

These experiences are part of what is called “ableism”. Like sexism, ableism makes gross generalisations about people: it is the assumption that every person has the same set of abilities and the same level of competency. The result is discrimination and prejudice against those with disabilities and those who may have a deficiency that is not classed as a disability (for example, when a person is literate in their first language, but largely illiterate in English or another second language).

Ableism can manifest in myriad ways, from the obvious (lack of wheelchair access to public buildings) to the hidden (important government information not presented in Plain English). Ableism can also be overtly harmful (the forced sterilisation of disabled women) or benign (the promotion of a disabled person’s success as “inspiration porn”).

Stella Young presenting “I’m not your inspiration, thank you very much” at TEDxSydney

Ableism is one of those things that once you start noticing it in action, you never stop seeing it. With so many close friends and family who live with a disability it is something that I witness on a daily basis.

I see the anger and the frustration as they struggle with basic, daily tasks that fully-abled people do without thinking. Something as simple as making coffee was dangerous and time-consuming for my blind family member until the release of the Nespresso.

I see the shame and humiliation my friend feels when they ask for help walking down stairs because they have a limp and can easily lose their balance if there is no railing.

I see the confusion and helplessness when children (and adults) with executive functioning deficiency struggle to keep track of the day’s schedule and fall behind.

I’ve also felt my own grief when I had to choose a different vocation because my disability prevented me from pursuing a career in music. I was lucky that I had so many other options available to me – not everybody has that luxury.

You might be asking, “What does this have to do with web accessibility?”

And the answer? Everything.

Making the web accessible for everyone

I want people with a vision impairment to be able to ‘read’ an e-document as quickly and easily as I do.

I want people with executive functioning deficiency to be able to find information easily online because it is presented in a clear and logical manner.

I want people with a sensory processing disorder to be able to open a web page and not be overwhelmed by scrolling banners and auto-play videos.

I want those with mobility problems – like tremors or arthritis – to be able to navigate the web easily and with as little pain and frustration as possible.

I want those with English language difficulties (because it’s their second language, they have dyslexia, or are functionally illiterate) to not only find information that they can read or listen to, but to also understand it.

How can I not want those things? How can you not want those things? And how do we achieve it?

Luckily for you, we’ve already done the hard work of figuring out which guidelines are relevant to copywriters and those who write for the web.
We’ve put together a couple of videos — so we can talk you though them when you’re ready:
eAccessibility webinar Part1
eAccessibility webinar Part2

You can even download the Powerpoint presentation from the videos:

The Copy Collective E-Accessibility Presentation Part 1 by The Copy Collective