For a variety of reasons low vision, partial sight, vision impairment, call it what you will, has been in my mind lately.
Reviewing papers as a member of the scientific committee for a Text Customisation for Readability Symposium has focused my critical thinking on the subject. With the folks at The W3C Web Accessibility Initiative who are running the symposium I have been considering the relationship text customisation has to do with web accessibility. I have reflected on my own experience while recognising that text customisation is relevant to a much larger group of people with different impairments.
The problem
Low vision has many implications for everyday living, and reviewing the papers reminded me of an experience last year. People from AccEase attended the Every Body In conference, New Zealand’s first disability Studies Conference, at Otago University, where we presented two papers. Among many thought-provoking presentations one in particular caught my attention, for very personal reasons. Writer Lynley Hood and Gordon Sanderson, an ophthalmologist, focused on the lack of services and support for people with low vision who do not meet the criteria for services from the Royal New Zealand Foundation of the Blind (RNZFB), despite their obvious needs. There are few support services for them elsewhere either, apart from some medical services.
One point Lynley made was the difficulty of living with declining vision without any support when it would make a real difference to quality of life. People currently have to wait until they have so little vision that they qualify for membership of the RNZFB. But by this time the quality of life has already become very low, and rehabilitation will be more traumatic and difficult because of the lack of access to support services at an earlier stage.
The RNZFB has predicted that by 2020 the total number of people with vision loss, as opposed to blindness, will be almost 160,000.
My experience
Their presentation caught my attention because I grew up in exactly that situation before becoming eligible as an adult for RNZFB services. For much of my young life I felt excluded from many mainstream activities, yet had no social or cultural frame of reference as someone with a vision impairment. Although I experienced real difficulties and discrimination in education and other areas of daily life growing up with low vision, there was little support for my family and me. That seems to still be the case, and it is particularly affecting our ageing population, although I suspect that there are children who are slipping through the net resulting from fewer vision and hearing checks in schools.
Incidence
An increasing number of older people with partial sight are in the position of having no vision related services. The RNZFB has predicted that by 2020 the total number of people with vision loss, as opposed to blindness, will be almost 160,000. This group of people is growing at a faster rate than the group of blind people. According to Vision 2020 Australia the risk of low vision and blindness increases three-fold with every decade of age after 40.
The situation is the same globally. The U.S. Census Bureau estimates that the world’s 65-and-older population is projected to triple by mid-century, from 516 million in 2009 to 1.53 billion in 2050. This will create a huge group of vision-impaired people.
Impacts
In New Zealand the RNZFB is a not-for-profit, receiving some government funding but it must also fundraise to provide services. The criterion for membership is an arbitrary level of vision, or lack of it. This has been challenged as a medical rather than a rights-based approach to sight loss and blindness. It is historical and opening the floodgates might not be an option. But such an arbitrary decision does not take account of the level of need among the low-vision or partially sighted population.
The everyday difficulties people with low vision face are different from those who are blind, and this is often not appreciated by the general population and those providing public and other services. Most people tend to see the issue in terms of being able to see or not being able to see. The reality is much more gradual and subtle, with low vision presenting in a variety of forms and resulting in a variety of communication and other challenges in a fully sighted world.
Problems include accessing mainstream technology such as computers, and web sites, although accessible ‘out of the box’ technology such as IPads can help. Mobile phones can be tricky. People with low vision can’t easily read documents people with regular sight can read, or see the signs on approaching buses. Timetables and airport displays are a nightmare, and unmarked steps and curbs are a danger. Regular eye checks will help identify medical conditions, but won’t give access to services which might help people overcome these barriers. While assistive technology can be bought over the counter and on the Internet it is expensive and good advice is necessary before buying.
Social isolation is critical, as a result of loss of independence and confidence, particularly among older people who may be afraid to go out on their own, or who can no longer enjoy social, cultural and sports events.
Solutions
Blindness is an absolute, well sort of. Low vision is complex. Does the solution lie with a government reluctant to spend more, or with a private sector being more accommodating? Does it lie in activism by a diverse group who, like hearing impaired people, as distinct from Deaf, are not known for their political activism. Unlike hearing impaired people, partially sighted people have no organisation to represent them. (Members of the Association of Blind Citizens must be members of the RNZFB which of course excludes many people with low vision.)
Like many other issues of access the problems faced by partially sighted or low vision people can be seen as a human rights issue. But human rights have to be analysed and grasped firmly and fought for by joining together in organisations of self-identifying disabled people, such as DPA NZ rather than by individuals struggling alone.
