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Thursday, September 6, 2012

An Untapped Resource

The above video was made and uploaded to You Tube by Elizabeth Acquino. Elizabeth maintains a blog "A moon, worn as if it had been a shell". See

I do not usually like emotional videos when it pertains to disability. Inevitably such videos rely on antiquated stereotypes such as pity or inspiration. In my estimation the above video highlights the fact raising a child with a disability is needlessly difficult. While my son is typical and I have not raised a child with a disability I do know what it is like to grow up with a disability. Between the ages of 9 and 19 I went through the medical mill. I suffered greatly as modern medical care back in the late 1960s and throughout the 1970s was primitive at best. Aside from great pain which I vividly recall, I remember my parents firm advocacy for me. They battled doctors, hospital administrators, school teachers, principals,  social workers, etc. They battled for one reason--to protect my rights as a human being. Many times I saw the fury in my parents eyes when some inane rule meant to dehumanize was enforced. At a very young age they taught me to assert my rights--the most valuable lesson they ever taught me.  The point I am striving to get at is to a small degree I get what it is like to raise a child with a disability. I understand this dynamic from the side of a child not a parent. The lessons taught by parents are critically important.  Indeed, most people I know with a disability that have carved out a career and independent life for themselves all had strong familial support. Exceptions exist of course. 

It has long been my belief that parents who fiercely support their children that have a disability are a great untapped resource in disability rights.  Parents enter the crucible of multiple hostile environments--schools and hospitals in particular and protect the rights of their children. The parents I know who have kids with a disability, especially those with significant cognitive and physical disabilities, are skilled at manipulating obstinate administrators and getting the services their child needs and is legally obligated to receive. This is no small accomplishment. Where parents and disability rights advocates fail is in advocating jointly. Parents too often are bought off by schools--we will give your child all you request provided you do not agitate further. And who can blame such parents for taking such a deal? I simply do not know how to get these two groups together. Schools certainly do not invite disability rights activists to their schools nor do hospitals or nursing homes.  What children are taught about disability is antiquated in the extreme--if they learn anything at all. Disability rights is not even a tiny slice of the curriculum. It is utterly absent when my son was a school boy--it is still absent at the university level in spite of the fact he is going to a school that has a significant commitment to disability scholarship.  This is the fundamental problem--the complete lack of awareness that disability rights is a civil rights issue. When I write this I feel like a broken record--one that no one is listening to.  This lesson must be taught at a young age--this makes me realize just how lucky I was as I often say I hit the "parent lottery".  I would love to hear from readers about how to get parents of children to embrace the work and advocacy of ADAPT or Not Dead Yet for instance.  


Matthew Smith said...

My own observation is that self-advocating disabled people and carers are often antagonistic to each other, and this is particularly true in the autism and cognitive disability area where you have carers publicly advocating for things like the Ashley Treatment and for "cures" for their conditions which amount to a pre-natal test to facilitate an abortion. Many disabled adults also want to put a distance between themselves and their parents (especially) because some of the latter seek to interfere in their disabled children's lives well into adulthood.

Some parents, sadly. don't fight for their disabled children; some are more interested in furthering their own careers and find their children's special needs an obstruction. I believe this is why my mother left me to suffer in a boarding school for four years - because she wasn't willing to countenance any more disruption to her own life and her own career (as a teacher, of all things). When I told her the sort of things that were going on there, she was obviously disturbed but refused to pull me out, saying "Where will you go?". Carers and parents will often defend each other when taken to task on failing to stick up for their children when things get tough - I've had my aunt tell me how distraught my mother was at having to send me away, but she wasn't so distraught as to put her foot down and say no. Some parents home-school their children, and that doesn't have to mean sitting with them all day.

I'm sure there are lots of people with different disabilities who have similar (or worse) stories to tell and they don't want these people's voices to be too prominent in any discussion about disability or advocacy. I have also noticed that in some fields you get high-profile groups using celebrity carers to advocate quackery and 'cures' that don't work or are harmful. So, with some types of disability the affected people's and carers' voices are more or less as one (such as in ME here in the UK) while in others they are very antagonistic, and some disabled people have good reason to be suspicious of high-profile advocacy by carers.

william Peace said...

Matthew, As always you make a number of good points. Sadly, you are correct there is some antagonism between carers and those who advocate for disability rights--in their own life and beyond. Even worse, there are some parents that do handle disability well. Your comments made me realize yet again how lucky I am to have had such wonderful parents. By the way, I really liked your last post.