Why my son isn’t special & other stories

June 16, 2007 at 10:05 am | In Blogroll | 5 Comments

There is an issue I struggle with in presenting this blog. Maybe sometimes unsuccessfully. I am a proud parent of all my kids. I try not to emphasise Moo’s achievements as being any more special than those of his brothers. And in trying to keep this balance, I often contradict myself because I am a proud parent.

All I want to show you is that a child with special needs, is a child not unlike any other. To present Moo as the child he is – motorbike crazy but with a physical disability. To show the challenges he faces and I sometimes face (due to pre-conceived ideas as to how things should be). But not put him on a pedestal as being courageous or inspirational, cause he is neither.

The latest round of the Disability Blog Carnival is up here.

Like always, it is full of many great posts and the theme is “Borders”.

But above all others I wanted to share with you this quote from this post. The quote is a response to why “inspirational” stories about people with disabilities should be discouraged.

First, it instantiates the medical model of disability, in which impairments are perceived as a lack, an abnormality, a dysfunction. Second, though well-intentioned, it is often exceedingly patronizing. Third, it has the unfortunate side-effect of stigmatizing all those who are, for whatever reason, unable to “triumph” over their disability. Fourth, it implies that an impairment is something that ought to be overcome, conquered, vanquished. It sets up a dichotomy between the individual and his/her body, between the “normal” self and the “disabled” self. In so doing, it increases the likelihood that the disabled person will alienate herself from herself. Given the stigma and alienation that all too often characterizes much of the experiences of disabled persons, perpetuating representations that foster the internalization of such stigma in the disabled person herself seems, to say the least, inadvisable.

Medical Humanities Blog.

Enjoy your weekend.

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Great post Jacqui! Thanks for culling out this quote. I am going to link to you. I think that people absolutely need to understand and internalize acceptance of disabilities in our society as just another shade of normal. The miracle stories and inspirational stories do damage though they also might give a parent hope or false hope. There needs to be a grounding of it all in acceptance of differences which has been a problem in humanity since the beginning of time. It’s great that there are people out there who can define this issue so succinctly and clearly for the rest of us! If disabilities in our world society were truly accepted as part of the norm the infrastructure of developed countries would change dramatically to include access, equal opportunity employment rights that were actually enforced and on and on.

Ok – off the soap box.

Comment by Kathryn — June 16, 2007 #

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Okay, just a statement: I’m not too sure that Moo or for that matter you and the rest of your family are NOT inspirational. You are, to me.

But I do get what you say. The whole “better off dead” idea that we’re constantly facing with regards to Loren is untrue and terribly hurtful to us and just one example of what you are talking about.

On a number of occasions recently I’ve had people saying to me that “as long as this baby is just normal and healthy…tra la la ” and every time I pointed out gently that even if the baby ends up with a disability of some sort we neither have a choice nor think that the world will end. Which normally provokes a red-faced mumble: “You know what I meant…” Yeah, unfortunately too well…

Obviously a life without extra challenges is easier, but is it necessarily more fulfilling or is it worth more? Or happier? NO!

May we all face a future where “shades of normal” is the norm.

Great post.

Comment by nelba — June 18, 2007 #

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Pingback by Spesiaal of maar net nog ‘n klein seuntjie? « Windpompe & Vygies — June 18, 2007 #

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Agree. What a burden for a disabled person to have to carry…the need to be a hero. I prefer to celebrate my son’s accomplishments as I would his sister’s…To appreciate that we all have God Given purpose. Can that purpose at times provide inspiration? sure, but the feeling , at times, that my special needs son, might need to be the next Stephen Hawkings, Chris REeves, etc. in order to have his life validated is so so wrong.

Comment by onegirlfriday — June 19, 2007 #

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Thanks for the link, Jacqui. I think this is an issue on which reasonable people can disagree, but it’s always bugged me. I do not care for the idea that disability is something that needs be triumphed over. I’m not remotely convinced the idea of “battling” one’s disability is productive.

Comment by Daniel Goldberg — June 20, 2007 #

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