New Year Old Struggles!
So, what is “appropriate”?
I read as much as I can that comes my way on the internet regarding disability issues and have an ever growing favorite list of articles to reference but I would like to start the first blog of 2012 on our Coded Generations site by referencing Amelia’s story which has recently attracted an incredible public outrage and rightfully so: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/. So many found it unbelievable that we live in a society in which some doctors and institutions charged with our “well being” exercise “god” like powers in denying a little girl born with Wolf-Hirschhorn Syndrome the right to live excluding her from a transplant waiting list because she was expected to continue life with an intellectual disability (“mental retardation” on the forms presented to her family). Her story, although incredible, is not an exception but the unfortunate reality for too many. But there is hope as social media finally empowers parents like Amelia’s to fight a system they would have no chance to do so otherwise: http://www.washingtonpost.com/blogs/on-parenting/post/denying-an-organ-to-a-mentally-retarded-child/2012/01/17/gIQAR5i25P_blog.html
The question I have is: why do these parents have to deal with something so outrageous like this in the first place? Don’t you think that we, as a society, have a real problem when decisions made to care for children with disabilities are based on their perceived future contribution? I think the situation gets even worse when thinking about some service providers in health and education with such low expectations of children with disabilities that prohibits them from seeing any value in “investing” effort and resources. The unfortunate reality is that far too many still do not see the value of a human being unless they have a high probability of contributing “productively” to society (although nobody defines expected productivity for the kids without disabilities). On top of this, add plain ignorance as so many ignore the growing evidence that shows the great achievements children and young adults with all kinds of disabilities are capable of when given access to real “appropriate” supports & accommodations, when enabled to attend school with their non-disabled peers and work in “real” workplaces. There are many examples to support this but if you have a moment I encourage you to check Carly’s Blog: http://carlysvoice.com/ and see what she can finally communicate to her parents, family and the world: http://www.youtube.com/watch?v=vNZVV4Ciccg.
The question many have, which bothers me the most, is “how much is it worth investing in children with significant disabilities”, what is the “appropriate investment” in those whom so many see little value in “investing”? I think the answer should be “as much as it takes” to give them fair access to learn and grow just like all others have since day 1 of their lives if we want them to succeed.
It took a law to invest in adapting buildings to give people in wheel chairs but don’t we all benefit from this investment when we push strollers and shopping carts? “We” invested in captioning TV programs for people with hearing disabilities but don’t we all benefit when watching news in airports, rail stations, restaurants/bars and other public areas? “We” invest in studying Alzheimer like conditions and heart defects in Down syndrome but won’t millions of others benefit from the results? “We” invest in Universal Design for Learning (UDL), developing more inclusive educational environments for children with disabilities but won’t all children benefit from having instruction delivered in different forms and using a variety of materials to making learning more exiting and reachable for all? “We” developed Positive Behaviors Interventions and Supports (PBIS) for managing behaviors of children in school with these challenges but once PBIS is implemented school wide all children benefit from a more positive school culture, reductions in suspensions and bullying as well as more teacher instruction hours that leads to better quality education overall.
Since it seems that investments made for people with disabilities has potential for improving everyone’s quality of life perhaps it is easier to define “appropriate” as what it takes to enable those children access real education , proper medical care and ultimately to the same quality life as others? Don’t we owe those children, their families, their friends and society at large our best efforts in developing a truly inclusive society that takes into consideration their challenges and allows them real access to developing and exercising their abilities to the fullest extent possible?
I strongly believe in J.F Kennedy’s quote that “Children are the world’s most valuable resource and its best hope for the future” and like to believe that by “children” he meant ALL of them with or without challenges.
