Suffering the Consequences of a Broken System

In the driver’s seat of inclusion at a typical Israeli gan

(This is a guest post by a 5 year old with Trisomy 21 and son of Nicole, to whom this blog space belongs. Daniel hosts his own forum at The Baby Blogs)

I randomly came across the fact that December 3 was International Day of Persons with Disabilities. Who knew there even was such a day? I did not. Nor did I experience any great celebration on said day.

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 Israeli ID card and it entitles me to various rights, 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 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

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!
• 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 per 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 Feuerstein Institute, the premiere place where I am receiving my (internationally lauded) therapies

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 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 in our country. A famous saying goes, “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.

The Ministry of Education, the Israeli insurance companies (specifically Maccabi, er, hmm) and Bituach Leumi (National Insurance) should be partnering with people like me — and our parents — to help make our lives better, rather than compounding our challenges.

Let’s hope that International Day of Persons with Disabilities will bring more awareness so that our rights can be readily meted out; distributed 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 those rights that I can execute on my own such as melting down in public and being cute. At all times.