Monday, May 05, 2008

Make Us Citizens and Watch Us Grow

One of the most joyful periods of my career in healthcare management was when I was working alongside adults with a learning disability and their families. This period from about 1979 to 1988 was the most satisfying time of my entire career.

People with a learning disability are often misunderstood by society and at that time, I and two other colleagues formed a team that was charged with the responsibility to close a large hospital that housed 140 patients and re-housing those people into smaller homes in the local community.

I've lost count of the number of public meetings I had to attend as fears in the local neighbourhood resulted in negative publicity about these people. Many local people believed the 'patients’ were dangerous. The most oft voiced opinion was something on the lines – ‘I agree with the principle of these people leaving hospital but I think they would be better situated somewhere else in the town rather than in our locality.’

I am delighted to know things have changed somewhat in the last 20 years because of the battles fought by many parents who refused to accept that their child should be locked away in some isolated asylum away from society.

I remember reading a report many years ago about the fight for people with a learning disability to have the right to vote. The title of that report was ‘Make us Citizens and Watch us Grow’ – I love that title and unfortunately I have never been able to find the report anywhere despite numerous Google searches!

Some of the nicest people I ever met in my life had a label placed on them by society that read ‘learning disability.’

That period of my life was without doubt the most influential in forming my views about disability and stereotyping. I like to think I keep an open mind about these things.

The best advice I had on the subject was from a wonderful Doctor I had the pleasure of working with for 4 years. He said to me the first time I met him;

‘Just spend time with the patients and their families and keep an open mind – that is all I ask of you as a manager.’

What brilliant advice.


Joel D Canfield said...

My father taught us from my earliest memories that you take each individual as an individual. We had no concept of prejudice as children, despite growing up in a time and place where it was common.

Without that lesson, I would have missed so much that's enriched my life.

I'm currently reading Mel Levine's A Mind at a Time, all about children with 'learning disabilities' and how the simple act of understanding them as individuals can change their lives.

Not to mention our own.

JOHN O'LEARY said...

When I was just starting school in Arlington, Massachusetts, I stuttered a lot (I was later told) and my mother assumed I had a learning disability. (The polite term for that in the 1950s was "retarded.") My mother - who as a school teacher was knowledgeable on the subject - even told my older sister to cut me some slack because of my apparent deficits. Fortunately I grew out of this condition (WHATEVER it was). I don't remember much about it, except for the persistent FEELING that I was stupid even after I began to perform at high levels in school. So apparently such characterizations leave their mark.

Trevor Gay said...

Joel - your Dad was a wise man. I agree with your comment about ‘changing our lives’ - working for almost 10 years with people who had a learning disability changed me for the better (I hope)

John - a brilliant observation. In England until relatively recently the term used was ‘mentally handicapped’ and when I think about that now, how awful it sounds! Most of the people I met and worked alongside were wonderful- many were gifted and they taught me much. And the family carers were inspiring people. Thank you for your powerful and very personal words - I feel honoured and somewhat humbled that you share them with us John.

Anonymous said...

It seems that public schools are quick to label kids today as medically or mentally "deficient" with little to zero professional testing or diagnosis. Once the label gets applied, it is difficult to lose and does have implications on their development and opportunities. Advocates like you Trevor are a marvelous thing...and make a difference!

Trevor Gay said...

Hi Dave – good to hear from you.

You are so right about the seemingly impossible task of getting rid of a ‘label’ once you have it. Spending time with people who have a learning disability taught me so much about the unfairness of labels and has had a lasting effect.

There are so many stories ... I could write a book ... maybe I should in my ‘spare’ time :-)

Richard Lipscombe said...

You have such a great story to tell your grandchildren.

You did the work we all want to do. Work that makes a difference - work that has real meaning. In this case it made a difference to 140 patients AND to a community whose irrational fears were holding them back.

You must be truly proud of those two outcomes. Well done!

Trevor Gay said...

Thanks Richard – it’s very kind of you to say that. I hope my grandchildren grow up with the good sense not to judge people by some label or stereotype but as individuals. We can all do that and we as adults should set that example. Surely that is one of the best personal legacies we can leave this world.

Yes I am very proud to have been involved in such a fantastic project that did make a difference.

Anonymous said...

A note my mother kept from a lecture some twenty years ago-

'A normal person is one who has not been properly assessed.'

Add my favourite from Quentin Crisp-

'Style is being yourself, on purpose'

and I think the world would be an even more interesting place if we strove to be 'stylish' rather than 'normal', n'est pas?

Trevor Gay said...

Great story from your mother's notes Lois - obviously a wise woman!

Many of the people I worked with in those days were very stylish - even if the label society had placed on them said ‘learning disability’ :-)