Low Visionary

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.

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I recently attended a presentation on health literacy. We were given a list of those people in the community who might have difficulty with health literacy. They included:

• poor people
• depressed people
• elderly people
• distressed people
• people with English as a second language
• people with long term health conditions or poor brain function.

We were also reminded that in New Zealand we have the right to health information under the Health and Disability Code of Consumer Rights:

• Right 5: the right to effective communication.
• Right 6: the right to be fully informed.

“Health literacy”  is defined as “the ability to obtain, process, and understand basic health information and services to make appropriate health decisions (K?rero M?rama, 2010).”

It is ironic that the medical and allied professions which have medicalised disability in New Zealand for generations have paid little or no attention to health literacy among disabled people.

I asked the presenter why blind, Deaf and other disabled people weren’t on that list. She thought for a bit and then said, without the defensiveness people sometimes have in such situations, the assumption probably was that ‘their own organisations” would do that. I am not shooting the messenger who got the point. But does that mean that struggling, poorly resourced not for profits are expected to do what large publicly funded organisation with legal obligations to do so, won’t?

Are we seen by the medical and allied professions as unworthy of access to everyday health information because our impairments can’t be “fixed?” Is it seen as too hard? Or do they think that the numbers (actually 20% of the population,) are too small to worry about.  They are scientifically trained yet seem unable to apply simple logic to what seems blindingly obvious to me, if you will pardon the pun.

It is the reality of daily life where the crunch is felt. I remember sitting opposite a well-educated blind friend in a café as he told me sadly that he could not find any information about his wife’s mental illness and of his frustration with not being able to advocate for her in the way he wanted to within the mental health system because of the lack of accessible information.

I often ask health professionals when they hand me a piece of paper with information about some routine health procedure. “Do you have this in an alternative format?” The answer is usually incomprehension and silence. I am probably marked as a pest in several places by now.

While health literacy is about understanding and managing our impairments, it is equally about the ordinary things;

• pregnancy advice
• healthy eating
• giving up smoking
• getting our kids vaccinated
• family planning
• and generally managing our health and that of our families.

That might be quite separate from our impairment/s.

Of course disabled people can be present in all of the groups outlined above as well. But the lack of inclusion in health literacy strategies and initiatives is an example of the way control of access to information can create barriers to realising the human rights to some New Zealand citizens. The right to health is enshrined in the Covenant on Economic, Social and Cultural Rights, and importantly the Convention on the Rights of Disabled People (CRPD), which the New Zealand government has ratified and has obligations to meet.

See also my earlier post on this subject, Health literacy for grown ups.

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