> My son has nearly died about ten times. He has hydrocephalus, a seizure
> disorder (all kinds); he's had emergency brain surgery, has severe visual
> impairment, cognitive impairment, sensory impairment, poor coordination
> and a weak immune system. He has suffered a lifetime of virtual
> friendlessness and ostracism. He has been tormented by psychosis. He has
> been ridiculed and shunned. His life expectancy is short. What little
> vision he has will be gone soon. He has been the subject of medical
> incompetence and malpractice and caring for him has driven my family into
> bankruptcy and stress pretty much beyond my ability to describe, perhaps
> beyond your ability to comprehend.
With that background, may I ask how old you are and by what lights you
> presume to tell me what I do or don't know about what other non human
> influences may have had an influence on my son or any other human? Also do
> you suffer from any chronic, incurable debilitating diseases? Do you
> believe in disease, or do you think that too is a silly concept? Do you
> believe in sanitation?
> I certainly have no interest in cute sophistries about the arbitrariness of
> norms for what constitutes being human. I do like to talk about such
> things, but generally at a post-kindergarten level.
I've been musing over these words.....
I no longer work with special children all the time...I used to do so,
with the Spastics Society of India in Chennai, and with the Ramana
Maharishi Academy for the Blind, here in Bangalore where I now live.
My interest in wildlife and photography have now moved me towards
volunteering with school children, taking them on nature trails. If
the group includes special children, I am ...hopefully...better able
to relate to some of them as a result of my earlier experience. There
are some schools where, luckily, special children are in the
mainstream of education and not segregated...I enjoy it very much when
they form part of the group coming along with me.
I've done some volunteering with dyslexic and autistic children...just
enough to know how complex these things are, and what the children and
their families go through, to deal with the "normal" world.
However, I am not formally trained (my daughter fell seriously ill
just when I was about to start the special educators' program, and I
never got a Round Tuit again)...and I do know how little I know!
I still know almost nothing about schizophrenia.
But I get to see the general attitude towards mental illness, and
different abilities, all the time. When one of our neighbours was
suffering from schizophrenia and his wife was struggling with the
finances, our apartment residents said it was a ploy by both of them
to avoid paying the maintenance charges. To change people's prejudices
and perceptions ...is a long, slow, and often frustrating process. And
sometimes I have to introspect, too, to see what motes are in mine own
eye...before I look at others. It's easy to think that one is free of
presumptions and prejudices...and one is not.
But...I have learnt...am learning still...that often people are cruel
and insensitive, not because they think they can be, or want to
be...they just lack imagination. I cannot give you a better example
than my neighbour who, after the Gujarat earthquake, told me very
seriously, "All those children in the quake debris....if they do not
know where their parents are, the rescuers should not save them." That
is the horror of the lack of imagination...the inability to put
themselves in a situation even briefly.
So, when we react sharply to such people, the result is often even
more negative. They do not realize what it is that has made us react,
and see only the "punch in the nose" that you talk about. Alas, it
being their nature, they cannot introspect at that point and wonder
what it was that made us react.
All that happens is, the frustration (and sometimes rage) that builds
up inside me boils over...and I am the one to suffer, for some time
afterwards, angered to tears over the insensitivity that I felt.
Oh well...there's no end to this story. I had a cousin who had Down's
Syndrome, and watched as my aunt and uncle eventually had to
institutionalize him. They were torn between grief and relief when he
died a few years ago, at the age of 52.
Some of us walk the dark paths, with grit and determination, yet
finding joy. Some of us walk in complete ignorance of the dark paths,
all our lives...we are so lucky, and yet never know it. We watch the
sentimental movies made about different abilities...and mouth