In the days before Rett, I’m not sure that I ever really gave much thought to what accessible means.  I’m pretty sure, for example, that I thought an accessible toilet was one with a door wide enough for a wheelchair to pass through.  Once inside, I must have imagined that the user would swing like a paralympian in one easy and athletic move from chair to pan. One of the reasons for this delusion must surely be because a toilet with a wider doorway is pretty much what passes for a disabled toilet in most places*. People with disabilities are rarely able to swing athletically around public conveniences, however.  Girls with Rett Syndrome never can.

We have a pressing need to make our house more accessible for R. We moved to our present home thinking that it would work for us, but a decline in R’s mobility shortly before we moved in, the need now for overnight care and possibly also an overly optimistic view of the future at the time of purchase mean that the house is fast becoming unsuitable for R’s needs. G and I can still carry R up and down the stairs, but she is much too heavy for her grandparents.  Lifting R in and out of the bath is still possible but we won’t be able to do this safely forever.

In these straitened times, our local council has taken the decision to cease the payment of grants for extensions.  The Occupational Therapist informed me that, instead, the council will pay for a lift to be installed.  She arranged for a sales representative to visit.  After considering the layout of our house, the rep said that the only possible location for this would be through our living room and up into our bedroom.  Having a “feature lift” in our living room is not terribly appealing.  In any case, hideous or not, the drawback of this solution for me is that it deprives R of the independence to move freely around her home because she would be unable to operate it alone.  How much nicer would it be if she could take herself off to her bedroom if she wanted to?

We don’t want to move. We like it here.  Moving was helpfully suggested by the Planning Office when I told them that unless we made major adaptations to our house, we would need a long and unsightly ramp running the length of the front of the building. (Moving is all very well but where to?  Where are all the accessible houses? Oh, there are none).

After several years of saving and procrastination, we have finally started along this road.  We met with an architect this week. R liked him.  He said that it was the first time the client – and R is the client – had given him a cuddle at the start of a project.  The implication, it seemed, was that clients do feel so moved at the end of the build, which I found immensely reassuring.  It’s going to be heart-stoppingly expensive, of course.  Already our wish list has been pruned back to the bare essentials. There is no alternative, however.  We need to create an accessible space for R.

*Truly accessible toilets look like this


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