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Monday, December 3, 2018

International Day of Disabilities

In honor of the International Day of Disabilities, allow me to repost a three-year-old blog. I've gotten bigger but the situation has pretty much remained the same!

See here for original.

In the driver's seat of inclusion!
Not even on Twitter, yet so many followers!
Happy to be... and Happy Day to Me!

I randomly came across the fact that yesterday Dec. 3, was International Day of Persons with Disabilities. Who knew there even was such a day? I did not.

I prefer to say that I am a person with varying abilities, not the least of which are my keen writing skills. Nevertheless, I have a title to put on my ID card and it entitles me to various things, some clear, many not and most that I need to go out and demand.

So on this auspicious occasion, I would like to point out what some of those key rights are, many of which overlap with the internationally recognized rights of babies, known to parents worldwide:
  • I have the right to drive my parents crazy
  • I have the right to harass my younger brother and sister
  • I have the right to throw fits and have meltdowns, in public
  • I have the right to attend a "regular" school
  • I have the right to receive therapies at school
  • I have the right to get therapies through my insurance company
Kids who play together advance important causes together (such as inclusion)!

But, in parallel response to those bullet points:
  • No buts, it's the God-given right of every child and we know how to use our rights!
  • My brother and sister are getting old enough to harass me back!
  • No buts, again, its our God-given nature and the Murphy's Law of Babies
  • I cannot attend school without an aide and the aide only gets 30 hours/week to be with me
  • The city cannot find/hire/pay one therapist willing to come to my school for just me for one hour a week
  • My insurance company doesn't cooperate with the premiere place where I am receiving my therapies rather offers me subpar therapists, many of whom have zero experience with T21, at their own place (*one said session ended in utter disaster)
And so my parents have their own newly bestowed set of "rights":
  • My parents have the "right" to spend all their spare time embroiled in wars with governmental and insurance company bureaucracy  
  • My parents have the "right" to spend the rest of their spare time quelling entanglements between all of us siblings
  • My parents have the "right" to take time off of work to bring me to my therapies
  • My parents have the "right" to pick me up early from school every day because we have no aide for the after-school program
  • My parents have the "right" and responsibility to maintain their sanity despite all of the above

Perhaps those aren't rights, rather consequences of a broken system. Our famous biblical saying is "faith without works is dead." Likewise rights without the infrastructure to make them into reality are useless.

Days such as International Day of Persons with Disabilities, like the concept of inclusion, are nice in theory. But without a widespread awareness of the challenges facing people with disabilities - and I'm not talking about the mental and physical challenges - change is a long way down the road. Let's hope that this day will bring more awareness so that more rights can be readily meted out. And meted out with a cheerful heart rather than a long and exhausting war every time!

I have lots of rights, but making them a reality is still a long way off. In the meantime, I make the most of the rights that I can execute on my own such as melting down and being cute.

Me and my shadow!
This is how Talia and I roll at school
I have a God-given right to be CUTE

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