There’s a common theme in conversations I’ve shared with other parents of children with disabilities. We often talk about our experiences and the challenges we’ve faced finding information, resources or services for our children. One mother posed the question…”Why the secrets?” I knew exactly what she meant. Sometimes it seems as though information that should be easily available, is instead protected like it’s the last can of food amongst a starving community.  It’s not the first time this question has come my way. It also wasn’t asked with the expectation I should have an answer.  It was more a common ground with a hint of sarcasm and frustration.   

 

The net is an obvious source for information but let’s face it, you could spend hours or days searching. Social workers, organizations, schools, hospitals, therapy centres, could probably save us time if the information wasn’t shared in this bits and pieces-need to know kind of manner.

 

Why the secrets? Maybe it’s the almighty dollar that limits what’s provided. Could it be a fear that if it is provided, we would take advantage, or perhaps over run the system with assistance requests? Is it the concern that someone’s job may no longer be required if it was all public knowledge?  Or maybe it’s simply too much information? 

 

I’m happy to share information whenever I come across anything.  Unfortunately, there’s not enough time in my day to share everything I learn or have experienced. I don’t know the answer to the question, just that it shouldn’t be this difficult. Like so many others, we can’t wait for the various powers that be to provide the resources, services, or information in a way that would better suit our needs. If we did, we’d be waiting too long at a cost too high. 

 

While one person might ask ‘Why the secrets,’  I’m always asking  ‘Why didn’t I know about this sooner.’ Whichever way you ask the question, you can decide to be compliant and be assimilated into this system; or you can decide that resistance is not futile and help each other. Okay, clearly I’ve watched too much Star Trek re-runs over the years. Oh well, you get the point. The only other option is not to care. If that was the answer, you probably wouldn’t have been reading this blog or be curious about the question in the first place.

 

What’s your take on this? Do you face these same questions? 

 

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(Wheel-ist-ic) Adj: awareness or acceptance of actual fact, real existence, or truth with relation to inclusion, accessibility and/or persons with disabilities.

Let’s Be Wheelisitic is a blog designed to open communication, share and create change through parenting, awareness, inclusion and advocacy. Over the years people have encouraged me to use my voice and experiences with my daughter to help others with or without disabilities, or parents of children with disabilities. This blog is my way of doing just that. I hope you will find this site enjoyable, educational, helpful, and rewarding.
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“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” — Mary Anne Radmacher

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