Ageing and disability: Independence, dignity and freedom of choice
As I have been working with Government on eAccessibility, which focuses primarily on considering the needs of older and disabled people, maintaining as much independence as possible is the principal goal and this goal is a constant, irrespective of the underlying cause of the loss of independence. It is something that I understand all too well and think about more than I care to admit.
In a conversation with Dr David Sloan from Dundee University on this very subject, my mind was invaded by thoughts of what independence actually meant. From the academic perspective, in the context of the research Dave does around technology and older people, independence is understood as an individual being in control of their lives and not having other people or authorities making decisions on their behalf.
This definition provides a commonality that works across the various public and third sector organisations that provide services to older and disabled people or those who they will come into contact with over time. This certainly makes sense and as the term is used pretty consistently, in the context in which it is used it fulfils its purpose, but my mind would not let go. I blame the ADHD for a tendency to uber focus.
Until this brain invasion, I was comfortable with referring to myself as being independent, but the truth is that I am not. Although I am indeed in control of my decision making, in order for me to function in every aspect of my life, I depend and rely on others.
I need assistance with mobility as I can no longer go out on my own. I need technology to help do what my brain and eyes cannot and when technology can't quite get me there, I need people to lend a hand. I need help getting dressed - to make sure my clothes are clean, they match and aren't inside out; although I am training myself to do my makeup mirror free, I still need Mark to make sure I have not overdone the foundation and do not resemble the Bride of Frankenstein.
But it goes deeper than this, as independence is not really about the practical things at all. It's about how you perceive yourself in the world, in the context of others, whether you feel you are taking or giving, participating or being excluded from doing so, contributing and being at the heart of it all and feeling the pulse of life permeate your soul or sitting on the sidelines knowing that you will never be called to play in the game.
And participation cannot be substandard, conciliatory or second rate; although it will probably be different to that of younger or non disabled folk, it will also be different than that of other older and disabled people, because all human persons are unique. How we choose to participate in life and society, the decisions we make day in day out as we bumble along trying to work it all out is what independence really means. To have the dignity that is afforded by freedom of choice is the essence of independence and more so of being human.
The Universal Declaration of Human Rights however says it far better than I can. Its preamble begins with pure respect for all human life:
"Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world."
If only.
About Sandi
Businesswoman Sandi Wassmer registered blind in 2008. In her blog, she shares with us the 'shenanigans of visual impairment'.
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Comments
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So many words about disability, self-perception and independence. Sometimes I am left wondering how and if organised intervention e.g. by large charities, can really mittigate this in the head stuff. As an older man, I am quite comfortable with myself these days but it certainly wasn't always so. Support groups can help and sort many practicalities; but when it comes to the crunch, you have to take control in your head.
I am, as a statistic, old, blind, partially deaf, disabled, VI,..and so it goes on. I bet all the big charities love me because I am one of those they can count as funder fodder.
But, actually, I am RogerWH, an individual who is happier than most, works hard and enjoys every day.
Start there and remind yourself every day that you are an important individual. Ask for help when you need it and tell others to piss off, politely of course, when they undermine you and your self-image.
Its a great shame there is so little dialog about these things.Posted by Roger Wilson-Hinds, 4 December 2011 (6 months ago)
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Hey Roger,
Thank you for your honest, insightful and 'move out of the way because I'm getting straight to the point' comment.
And what matters even more than all of that is to be lucky enough to find love. On the way home from Peterborough, Chris told me that you and Margaret held hands all through lunch like love struck teenagers.
Old? Disabled? Just labels. You are who you want to be, as you persevered, against adversity and opinions. I hope to get there someday too.
SandiPosted by Sandi Wassmer, 6 December 2011 (6 months ago)
