Wednesday 30 April 2014

#BADD2014: Support and Independence

This is my submission for #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. A second submission can be found here, and is an account of my time in academia.


Attitudes towards both what is and our rights to an independent life could possibly still be one of the greatest forms of disablism we can see in our society today. Despite great strides forwards our independence is still considered an expensive luxury to be given or taken away.

For the past 17 years I have needed "personal care". This has been provided via social services in a number of ways, at first through care agencies and later through personal assistants I pay via direct payments.

I will occasionally tell people that this support has allowed me to stay "independent". This completely throws some people. Some have even laughed in my face.
"How can you possibly be independent? You need help with basic things like getting dressed, washing, cooking, heck, even cutting up your food!"

I consider this a failure to understand what independence really means. I have always made my own decisions on every aspect of my life.  This includes the small things like what I have for dinner, what time I go to bed, or simply what I watch on TV or what I do for leisure or social activities. But it also includes the big things like what job I do, where I live, what I spend my money on, whether I go away for a weekend or holiday, and who I choose to have friendships and relationships with.

The fact I need help with basic tasks simply means I require support in order to remain in control of my life. And that is what I consider independence to be about: control, rather than trying to do every little thing all on my own.  Does it matter that someone else cooks and cuts up my food? No. What does matter is that I decide what I eat and (roughly) when I eat it.

Refusing to view me as an independent adult is, to my mind, a form of disablism. I am not considered a proper equal simply because I cannot perform a few physical tasks. Yet in every other respect and in every aspect that matters, I am living exactly the same life as everyone else. I have the same responsibilities and the same rights.

After all, to some extent everyone requires support of some kind, whether they realise it or not. For instance parents may be reliant on their child minders in order to go to work. Commuters may be reliant on their train or bus drivers. Disabled people are simply reliant on their personal assistants. The truth is that the difference between disabled and non disabled people is not really as great as people imagine.

Admittedly the consequences of removing that support are far greater for the disabled person than for the non disabled person.  Removing or even simply cutting that support could impact on the very basics of life such as hygiene, dressing and eating and would certainly prevent them from continuing many social, leisure or work activities.

This is why support is so crucial and must not be cut, even in these difficult economic times. It is vital that councils somehow continue to fund the support disabled people need. The price otherwise will indeed be our independence.

However, with council budgets being squeezed year by year,  care thresholds being raised, caps being placed on community social care, disabled children being described as "burdens", the ILF being closed down with no clear budget replacement, social care funds not being ring fenced and the rationing of care hours (eg only microwave meals allowed, women told to cut their hair to shorten shower times, only 1 shower allocated per week, removal of social activities help, removal of night time care in favour of incontinence pads, etc), it would seem that for many that price is not too high in the name of economy.
Apparently our independence is deemed a luxury, not a right.


  1. Really like this! Pity so few understand independence, and the threat to it.

  2. Brilliant piece! Why can't people get it - life is life, and some lives need more help than others.
    As for the removal of funding and the total defiance of a law by stopping the ILF, disgust doesn't even come into my thinking!
    I want to know how the councils can also have funding for the lunches and dinners that they attend or put on - the large meeting rooms with the very best furniture and the rooms full of historical arts...

  3. Women told to cut their hair to shorten shower times? Yep, that's me. Hip-length hair and several carers complained and suggested I cut it. Why should they have ANY say on my appearance, and how dare they even suggest I change my body to suit them? That's even worse than one younger female carer who looked at me askance for not having shaved my legs. How am I supposed to be able to do that if I can't bend forward and carers are not allowed to do it for me, for crying out loud?!

    I've never had any social activity help - I get care at home and that's it. My care agency will not visit me anywhere other than my registered address. I have to limit my activities because I don't have enough help.