I am an articulate, well-educated person who practices self and systems advocacy regularly. These days I rarely encounter problems I cannot find a workaround to mitigate. However, the below example illustrates the extra effort that a disability can bring to something as simple as purchasing a textbook and the often hidden time and effort those with disabilities use to find solutions.
To improve my article writing, I enrolled in a 12-week course that relies heavily on a textbook and the activities within that textbook. With today’s technology, such as Amazon Kindle and Audible, I thought obtaining an electronic textbook could be more straightforward. The course is framed around working through the 12 chapters of the book and meeting weekly with a group of colleagues after completing reading and associated writing tasks.
As I write this, we are in week four of the course and as someone who is blind, I am finding it difficult to engage as the course materials are not available in a format that is easily accessible. I want to caveat this with the Information that this situation is not due to a lack of time or self-advocacy but systems.
I enrolled in November and was asked if I wanted the textbook and asked for an electronic textbook version which I was informed was available. Other participants were supplied with print copies. However, it wasn’t available in New Zealand and required contacting international Organisations. When I found out it was too close to Christmas, many places had shut down for the break.
On my return to work, I asked the library if they could source me an electronic version, As I had no luck purchasing one. When they couldn’t, I approached the Blind And low Vision New Zealand (BLVNZ) Library, which had no copies.
As the course Start date got closer, I tried more overseas sources; I pay for an Audible and Bookshare subscription which is US-based and supplies audio or e-book formats. I thought I had a good chance of getting the book from either of these. The common roadblock has been that it isn’t available in New Zealand. However, I had no success. I lived in the UK For a while and still have access to RNIB library electronic and audiobooks, so I searched these databases with no luck.
By this time, the course had begun, so I ordered a print copy from Amazon, thinking I would make do. I soon discovered that on top of a full-time job and visually heavy daily tasks, reading a chapter a week and doing the associated coursework wasn’t feasible when it was in printed text.
Some might suggest using a magnifying glass. This is a legitimate workaround; however, this takes time and causes slow reading with visual fatigue. Doing this extra visual work involves using my remaining vision and means I am faced with deciding whether self-improvement or saving my vision for work tasks is more important. Seeing my colleagues achieve Work and self-improvement concurrently can sometimes make me feel a sense of failure as someone who thrives on improving myself and the world around me; continually rationing what I can achieve after experiencing not having to ration my vision can be disheartening.
Four weeks into the course, I have been contacted by an organisation that can record the book if I can send my print copy But the catch is there is a three-week time frame Meaning we would be at week six before I put fully engage with the same access to the resource that others have had since December.
What I have learned is that there are services that can assist. However, these are not necessarily well-advertised or well-known. Furthermore, the lead times mean that in time-dependent situations, access to publishes electronic copies of things like this may be more beneficial.
In the meantime, I have sourced another print copy of the book and with this, I can continue until the audio version is ready. What I’m grappling with is that by the time I get the audio version, we will be six weeks into the 12-week course. Is it worth my time and extra energy to use the print book or to save my vision for other related work tasks that need my attention? In other words, is the effort and fatigue worth it when I am already three weeks behind and using resources that are not fit for purpose?
The example has illustrated the extra effort that having a disability brings to everyday tasks like picking up a book and reading it or, in this case, sourcing a book that others can quickly obtain.
Reflecting on the situation has made me realise just how much extra and hidden effort it takes for someone with a disability to achieve personal improvement and everyday tasks like purchasing a book. Similarly, it shows how often I need to actively compare the amount of visual fatigue that a task will cause with what I will gain from from competing it. In this case, I will likely opt out of a professional development activity so that I can function to continue doing my day job.
On some levels this feels like a failure, yet on another level it can be seen as self care. Regardless of the feelings, the above situation illustrates a very commonsituation for those of us who live with disability. This is that to access our society requires more effort, workarounds and adaptations particularly when access needs are not always considered at inception or design.
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