By Daniel*
I randomly came across the fact that yesterday Dec. 3, was International Day of Persons with Disabilities. Who knew there was such a day? I did not.
Thanks to the UN, “Since 1992, the United Nations International Day of Persons with Disabilities (IDPD) has been celebrated annually on 3 December around the world.”
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 – “Disability” – 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.
Without a widespread awareness of the challenges facing people with disabilities change is a long way down the road
As a child with Down syndrome who lives in Israel, I have already experienced the gamut of services and disservices that the country has to offer. Israel may be far ahead of the rest of the Middle East, and the world in some respects for therapeutic care (Feuerstein Institute and Shalva National Children’s Center are world renowned), but lags behind when it comes to supported inclusion in education. Just ask my parents!
Nevertheless, on this auspicious occasion, I would like to point out what some of my personal 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
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: It is 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, hence I cannot fully attend school, which if someone at the Ministry of Education could do math better than I, they would’ve known this.
- The city cannot find/hire/pay one therapist willing to come to my school for just me for one hour a week for speech or occupational therapies, hence I do not receive therapy at school.
- My insurance company doesn’t cooperate with the premiere place (Feuerstein) where I do go for therapy!
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 public humiliation
- My parents have the “right” to take time off of work to bring me to my therapies
- My parents have the “right” to not work a full day and to pick me up early from school every day because we have no aide for the after-school program, or, better, to keep me home if our 30-hour-a-week aide is sick and no substitute can be found
- 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 at will and being cute.
*This is a guest post by a 6 year old with Trisomy 21, and son of N.J. Schiavi, KNI news editor. Daniel maintains his own blog at The Baby Blogs by Daniel. This post was first published here.