Book allows people with intellectual disabilities to be Invisible No More

Review by Rob Harle of Invisible No More, A Photographic Chronicle of the Lives of People with Intellectual Disabilities by Vincenzo Pietropaolo (Rutgers University Press, 2010):

This a very special book indeed. Poignant, powerful and heart rending to say the least. Vincenzo Pietropaolo has through his photographs and short evocative stories that accompany them, made visible the too often invisible lives of individuals who are born with intellectual disabilities. The coffee table style book has over one hundred stunning photographs, some in black & white, though mostly in colour, and thirty stories which complement the photos.

The Forward by Wayne Johnston explains clearly why Pietropaolo wanted to create this work and the way he went about it. Most of the photos are taken in Canada. Pietropaolo travelled the length and breadth of this huge country with its dramatic scenery changing from the frozen Arctic north to the vast wind swept prairies. The people he photographed are just as dramatic as the landscape they inhabit. This book "...seeks to change the way we see -- or rather don't see -- something." This something as the subtitle suggest is "...not a thing, or even a group of things, but a group of people" (p. ix) Pietropaolo has a unique gift of capturing the true essence of individuals which emanates from their eyes in the most unsettling manner. If as the cliché goes, "The eyes are the mirror of the soul" then he has photographed the souls of these individuals. In my opinion our lives are the better for having been giving the privilege of sharing, and in a very limited sense, partaking in these peoples' lives.

The main essay, Genius: An Introductory Essay written by Catherine Frazee is simply brilliant! She uses the concept of genius to show how society's attitude to those who are "differently enabled" changes like the weather. This essay discusses briefly some of the deepest and most important (and difficult) philosophical issues of our times. Specifically do we abort foetuses because scans and genetic testing have shown genetic abnormalities such as Down syndrome? On the one hand we hear scientists exclaim with glee that soon we will rid humanity of all these terrible mistakes of nature, on the other hand religious believers argue that we have no right to "play God". It is not my intention, nor the place to discuss this in detail, however, I would offer one caution. Where do we draw the line as to what is an acceptable (allowable!) disability and what is not? I was born with red hair. One of my mother's "friends?" said, "If I had a redheaded child I would drown it at birth!"

At what stage do we start practicing Galtonian or Spenserian eugenics? "...the greatest minds and moral leaders of the early twentieth century championed the cause of eugenics..." (p. 7) Whilst genius was appreciated in the early twentieth century feeblemindedness was considered a curse and brake on human progress. The following is so shocking I'll quote it in full.

"In order to prevent its [feeblemindedness] spread into future generations, the reproductive proclivities of feebleminded persons would be regulated. Institutions for custodial supervision and confinement were populated on a massive scale. In an ever-increasing fervor to "extinguish the line" of feeblemindedness, practices of containment and sterilization were legally mandated in both Canada and the United States. Estimates indicate that over sixty-five thousand persons were sterilized in thirty-three U.S. states under compulsory sterilization programs. Across the border in Canada, the Alberta Eugenics Board mandated to eliminate "multiplication of the evil by transmission of ... disability to progeny," approved nearly five thousand cases for sterilization between 1928 and 1972" (p. 7)

This book squarely confronts the reader with these questions in the most profound though sensitive and gentle way. I see how my own life has been enriched through contact with individuals with disabilities, one young woman with Down Syndrome, Makushla was an artist working in many forms, her paintings expressed feelings that one could almost touch. When she died in her late twenties I wrote a poem to remember her special contribution to our society. This poem may help convey in a small way what Pietropaolo portrays through this marvellous book.

Laughing Makushla,
master of the Heart Chakra
lives on in the iridescence of sunsets.
A short life
each breath creating, dancing, laughing,
teaching us to transcend the intellect.
Plunging naked, innocently
into the mystery of life.
She reified her love
in dance,
and paint
and light,
for all of us to share.

This book will make you laugh, cry and confront you with issues that many would prefer to remain invisible -- that is until the "issues" effect you personally.