Jemima:
The Future
[Under
development 6 February 2005 ]
Guessing the future does not feel straightforward
for anyone. No-one knows what is round the corner.
However, there is no template from which to map out the years to come. To
illustrate this point, I shall pull out of the air, at random, three points.
Most parents can expect:
1. to
send their child to school;
2. to give their child a bicycle, and
3. to take their child away on holiday with them.
Most parents anticipate that their child will
have the same kinds of expectations as they themselves did as children. Past
experience has inadequately prepared us, and is only a meagre guide, for
bringing up Jemima. For instance, Jemima's schooling is a highly political
matter, because she is sent out of county, and financial cutbacks at any time
in the next six years could mean that appropriate educational provision is
withdrawn. Jemima goes to school on a daily basis. She attends Northern
Counties School for the Deaf in Newcastle upon Tyne, UK.
Jemima will never be able to ride a bicycle.
Instead, our concern is how to get her access to an appropriate wheelchair. Her
motor control is insufficient to cope with an electric wheelchair (although she
would like one), and so all her locomotion is dependent on the presence and
help of other people. The size of a wheelchair demands a large car boot, and
lifting Jemima into and out of a car seat demands the kind of access available
only in an MPV: so we had to buy an MPV (Toyota Picnic). More recently, lifting her in and out
of the Picnic became problematic, and we were left with little option but to
buy an adapted vehicle that carries her in her wheelchair (a wheelchair adapted
VW Sharan).
Going on holiday, particularly overseas, takes
phenomenal planning and information gathering: checking out wheelchair access
in advance for every hotel we book, every tourist attraction we wish to visit
(e.g. Warwick Castle is almost completely inaccessible for wheelchairs), and
many restaurants in which we intend to eat. For instance, we recently visited
Venice, and I must have contacted more than two dozen hotels, and obtained the
details for as many again, to locate a hotel we could afford and could
accommodate a person in a wheelchair. I even made telephone calls to the
The latest Big Problem has been how to transport
Jemima by aeroplane. Until now, she has travelled strapped into her car seat,
which, in turn, is strapped into the airline passenger seat. However, she is
getting too big for her car seat and requires a new, larger one. There is no
way in which a larger car seat is going to fit into an airline passenger seat.
I telephoned British Airways and asked their advice. I was told that either
Jemima could be "tied to the airline passenger seat or else travel on a stretcher."
(Were the Victorians less enlightened even than this?) I hope that someone from
British Airways reads this web page one day and asks themselves: "How
would I feel about this response if it were my child being considered?" It
would seem that neither the airlines nor any manufacturers fear any loss of
revenue by ignoring the needs of people who cannot sit unsupported.
Almost until her ninth birthday, we lived in a
three bed-roomed, semi-detached house. Jemima's furniture and equipment take up
a lot of room and we ran out of space. As she gained weight, albeit slowly,
carrying Jemima up and down the stairs has become increasingly problematic, and
there were several falls that could have been catastrophic. A through-the-floor
wheelchair lift was the only way to deal with the situation, which would have
required considerable modifications to the house. A downstairs toilet was also
becoming essential. A walk-in shower would be of value when it becomes too
difficult to lift her in and out of the bath. We drew up plans with a builder
to modify the house for Jemima's needs. However, the modifications would have
run to almost half the value of the house, and would not have added to the
value of the property. There was no grant-funding to be had (I know because I
applied). There was, therefore, little choice but to move to a bungalow. Many
modifications will be necessary, such as a wheelchair ramp to the front door, a
walk-in shower, and environmental controls so that Jemima does not have to be
attended to constantly. However, the problems associated with living in a
two-storey house with stairs have now evaporated.
