Memorandum by Mrs Dorothy Morgan Evans
I suffer from progressive visual impairment
due to macular degeneration. My experience during the past two
years has demonstrated the difficulties arising from the fragmented
nature of the services that are theoretically available to the
visually handicapped and the consequent problems in accessing
them. Responsibilities are split between statutory authorities
(hospitals, social work), private practitioners (consultants,
opticians) and voluntary bodies (RNIB, local blind welfare societies,
societies devoted to specific visual handicaps eg macular disease,
glaucoma). These agencies vary in competence and helpfulness.
The difficulty for people newly affected with
visual difficulties is how to access the information needed to
restore some semblance of normality and independence. What is
needed is something more practical than pious invocation of more
communication and cooperation between all concerned. From a personal
point of view, a discussion with somebody knowledgeable about
what is available and suitable at the point of diagnosis would
have been of great benefit. As it was, my initial and only contact
with the Social Work Department was to receive a bewildering number
of forms (that I could not read) through the post, though admittedly
the accompanying letter did offer me a chance to talk about my
"feelings" which might have been helpful to some people.
But my need was for information about how I could manage life
without being able to write or read. And if there is any single
definitive source of information I have still not found it. In
fact, after two years of delving and ferreting about I am probably
it! There are amazing devices available and my independence has
been secured because I have one way or another discovered and
bought them. But most of the information I managed to obtain eventually
came from retailers of the equipment who were very helpful but
are not perhaps the most disinterested of advisers.
Which brings me to another "what could
be done" point. The necessary equipment is expensive. I depend
mainly on three principal tools: an adaptation for my computer
which enables me to enlarge and manipulate the screen; a CCTV
which allows me to enlarge printed matter up to 16 times; and
a sort of electronic telescope which can also be adjusted for
reading. I have spent over £5,000 on these gadgets, which
to me are as essential as is a wheelchair for those without physical
mobility. There is one concession—articles exclusively for
the use of the blind are not subject to VAT—but there are
some grey areas where the VAT man argues that others could use
the devices and so exemption could be withdrawn. In any case the
fact remains that the equipment is costly and I wonder if it needs
to be. For instance, the oversize keyboard I am using cost £164
(though I did manage to reclaim the VAT after a struggle). It
has occurred to me that if the cost cannot be brought down to
a more reasonable level could not some national scheme of renting
the more expensive items be devised? No doubt the notion of providing
physically handicapped people with their own mobility cars seemed
equally far-fetched at one time.
I suppose that in the end it all comes down
to what most afflicted people want to alleviate their various
conditions—what do I need? where is it? how can I get it?
September 2004
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