Home > anticuts, Capitalism is bad for your health, inequality, politics > Complexity of the choices faced by parents of a child with severe learning difficulties

Complexity of the choices faced by parents of a child with severe learning difficulties

This story is so ripe with complexity and ethical nuance that I’m a bit warey to post as I have wise and thoughtful friends who may well convince me that I am entirely wrong, but my first response is to support these parents who chose to “freeze in time” their severely disabled child

For me it is the lack of support for those with disabilities and their carers, leading to such immense challenges to carers as in this story, that gets me angry. Although this case is in the USA, we really shouldn’t feel too smug in the uk.

People with severe learning disabilities never “grow up” to become independent and leave home. Instead they tend to be cared for by their parents, as all involved get older and older. The love, commitment and bonds that I’ve witnessed in such families is beautiful. But if a society is to be judged by how it treats its most vulnerable, then we are in a very sorry state. These families have very little support from the state, whilst the political class appears confident that those with learning disabilities and their full-time carers will have little time or energy to do anything about it. Whilst they were wrong in this assumption with some of the carers when glasgow council decided to close the only facility for adults with learning disabilities in the east of the city, a large proportion of the carers involved are elderly and exhausted by their caring commitments and supported the campaign but couldn’t get involved.

In the USA I can’t begin to imagine what life must be like for those with learning disabilities, and their parents. Do they get any help or respite?

As a nurse I have experience of providing “all care” for fully grown adults. I wouldn’t dream of trying to reposition them or change their incontinence pad without at least one other person. In addition to maintaining dignity and comfort for the patient, doing both regularly is essential to avoid bed sores which can quickly become deep, painful and hard to heal. But for large patients it is a physically challenging task. Could we have teams of compassionate, motivated caring staff without time pressures visiting each of the “patients” frequently each day to assist the parents with the care needs? They could provide the extra hands needed to get the service user out of bed and for trips etc, for a richer life, as full as is individually possible.

Without social support parents like those in this story are going to make difficult choices. But choices aren’t made in a vacuum. There is a political and economic context, and criticizing individual actions without reference to this is akin, in my mind, to blaming the victim for what they did to survive an attack.

  1. May 8, 2012 at 10:48 pm

    The situation in the UK is no better and is about to get much worse if we don’t do something right now. Please sign and share Pat’s Petition which calls for the government to “Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families”. The link is here http://epetitions.direct.gov.uk/petitions/20968

    • May 8, 2012 at 11:04 pm

      Have signed and shared. Good luck with it. Disgusting what is going on here as well. :(

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: