The New Face of O.I. / Disability

Having had O.I. for some twenty odd years it is interesting to reflect on how it has changed in the span of my lifetime. While the most obvious changes are in the areas of medicine and treatments, there are many other aspects of life that O.I. affects too! For this post I thought it would be neat to write a blurb on how O.I. has changed in the Educational, Familial, Social, and Legislative realms.

Since I've spent my entire life as a student, stepping out of this perspective and looking at how O.I. has changed in this area was a bit difficult. But I've managed to come up with a few things: First off I've gained independence and trust. It used to be that students with disabilities were looked down upon, or treated in a condescending manner. I'm not saying that this behavior has completely vanished, but in my experience I have gotten a lot less of that attitude. It seems to me that throughout my education schools have been more willing to let me lead my own life, and be my own expert in terms of what services / assistance I needed. There is also more of an effort to have inclusive classrooms and lessons that seek to teach the value of each student's differences and abilities. Secondly, expectations have changed. Twenty years ago it was rare that a student with a disability would go off to college or attend a study away program. Now access to higher education is encouraged! There are services and agencies that will help with transitions between high school and college; colleges and universities are increasingly more adapting and accessible; and more and more children with disabilities are able to realize their own abilities and impact with their education. Of course the saying here is all too true: we have come a long way but there is still so much to be done!

I am nowhere near this state of life but I've noticed the increasing number of O.I.'ers starting families. The kind with children, family vacations, and maybe even a pet dog. What I meant to say here is that the possibility of having offspring is now more medically possible than it was twenty years ago. A few years ago I remember a major news story about the mother with severe O.I. and her unaffected husband who had a child; the story covered the conception, birth, and described some of the family's day-to-day life experience and worries. Not only was this made known to the 'mainstream society' but in doing so it normalized what an O.I. family might be like. It let America and the rest of the world realize that, for us, having a family is possible! Another major influence in this area was the Picoult book Handle with Care. Whether you thought it was a good book or not doesn't matter; it's the fact that the trials and realities of an O.I. family was put forth into mainstream culture. This book brought a lot of chatter and awareness for the O.I. community; even more so it also allowed many in the O.I. community to bond over the challenging family dynamics that having a disabled or O.I. child can bring. Lastly, is the area of adoption. Twenty years ago I'm not sure that children with O.I. or any other severe / complex disability would even make it onto an adoption agency's radar. Now there are outlets for children with O.I. who are waiting for a home and are (hopefully!) being placed in knowledgeable, aware, capable, and loving families.

As a twenty-something this is the most exciting area for me. With the seamless incorporation of social media into my life, it made connecting with other O.I.'ers that much more effortless! NEWS FLASH: THIS BLOG'S EXISTENCE! It took only 6 months for me to connect with some 300 odd people from all around the world who all have some connection with O.I. Many of you are parents of O.I. children and others of you have O.I. yourselves, but twenty years ago that would not have been as easily or quickly accomplished. Our social connections have had a tremendous influence on our day-to-day lives. Everyday there is someone reaching out for support on one of the O.I. online forums, someone else is looking for resources in her state, and always a young kid looking to see if there's anyone else out there like me? Socially our lives have changed because we are all less alone. While this has some drawbacks, I believe that for the disability and O.I. community the pros are life changing. We are able to share, connect, reach-out to, and support one another in ways and numbers that weren't possible twenty years ago.

The Americans with Disabilities Act (ADA) was enacted in 1990. This was well within my lifetime although at the time I was probably just beginning to read chapter books. This act enforces and ensures equal access and opportunity in the areas of employment, transportation, telecommunications, and public/government accommodations and commercial facilities to Americans with disabilities. This is the document that prevents discrimination when I'm trying to look for a job; it allows me to be heard when I complain about broken elevators in the public transportation system; it mandates appropriate accommodations for me in the workplace; those are the words that allows public libraries to be accessible to me... and so much more! Since that time the ADA has been amended to for language - in 2008 the President broadened such terms as "major life activities" and revised its definition of "substantially limits;" it also changed language so that those whose disability is episodic or in remission would be included in its coverage, ultimately in doing all of this the document now becomes more inclusive of those with disabilities that may have otherwise not been protected under the ADA. Another piece of legislation that happened during my lifetime is the Individuals with Disabilities Education Improvement Act (IDEA) of 2004. For those of you with children who are in special education programs this is the act that covers IEP plans or 504 plans - both of which I have personally benefited from throughout my education.

Posted in , , , , . Bookmark the permalink. RSS feed for this post.

Leave a Reply

Copyright © 2011 Perfectly Imperfecta. Powered by Blogger.